The Routledge Handbook of Health Communication

HANDBOOK OF HEALTH COMMUNICATION

HANDBOOK OF HEALTH COMMUNICATION

Edited by

Teresa L. Thompson University of Dayton

Alicia M. Dorsey Texas A & M University

Katherine I. Miller Texas A & M University

Roxanne Parrott Pennsylvania State University

2003

LAWRENCE ERLBAUM ASSOCIATES, PUBLISHERS Mahwah, New Jersey London

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Linda Bathgate Karin Bates Kathryn Houghtaling Lacey Paul Smolenski TechBooks Hamilton Printing Company

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C 2003 by Lawrence Erlbaum Associates, Inc. Copyright
All rights reserved. No part of this book may be reproduced in any form, by photostat, microfilm, retrieval system, or any other means, without prior written permission of the publisher.

Lawrence Erlbaum Associates, Inc., Publishers 10 Industrial Avenue Mahwah, New Jersey 07430

Library of Congress Cataloging-in-Publication Data Handbook of health communication / edited by Teresa L. Thompson, Alicia Dorsey, Katherine I. Miller. p. ; cm. Includes bibliographical references and index. ISBN 0-8058-3857-0 (case : alk. paper)—ISBN 0-8058-3858-9 (pbk. : alk. paper) 1. Communication in medicine—Handbooks, manuals, etc. 2. Physician and patient—Handbooks, manuals, etc. I. Thompson, Teresa L. II. Dorsey, Alicia. III. Miller, Katherine (Katherine I.) [DNLM: 1. Communication. 2. Physician-Patient Relations. 3. Delivery of Health Care—organization & administration. 4. Health Promotion—methods. 5. Patient Education—methods. W 62 H236 2003] R118.H26 2003 613—dc21 Books published by Lawrence Erlbaum Associates are printed on acid-free paper, and their bindings are chosen for strength and durability. Printed in the United States of America 10 9 8 7 6 5 4 3 2 1

2002015809

To Alyse and Tony Teresa Thompson To Leroy and Adam for their love and patience Alicia Dorsey To Jim and Kalena Katherine Miller In memory of Amanda Kundrat Roxanne Parrott

Contents

Preface

1

Introduction Teresa L. Thompson

xiii 1

PART I: INTRODUCTION (edited and with introduction by Katherine I. Miller) 2

Illness Narratives and the Social Construction of Health Barbara F. Sharf and Marsha L. Vanderford

3

Theorizing About Health Communication Austin S. Babrow and Marifran Mattson

35

4

Communication in Medical Encounters: An Ecological Perspective Richard L. Street, Jr.

63

9

PART II: PROVIDER-PATIENT INTERACTION ISSUES (edited and with introduction by Teresa L. Thompson) 5

Provider and Patient Communication Skills Training Donald J. Cegala and Stefne Lenzmeier Broz

6

The Nature of the Therapeutic Relationship and the Assessment of Its Discourse in Routine Medical Visits Debra Roter and Kelly S. McNeilis

95

121

vii

viii

CONTENTS

7

Outcomes of Patient-Provider Interaction Judith Belle Brown, Moira Stewart, and Bridget L. Ryan

8

Medical Disclosure and Decision-Making: Excavating the Complexities of Physician-Patient Information Exchange Catherine M. Gillotti

163

Children, Older Adults, and Women: Impact on Provider-Patient Interaction Jon F. Nussbaum, Sandra Ragan, and Bryan Whaley

183

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141

PART III: SOCIAL AND COMMUNITY HEALTH ISSUES (edited and with introduction by Alicia M. Dorsey)

10 The State of the Art and the State of the Science of Community Organizing

207

James W. Dearing

11 The Continuing Challenge of Community Health Risk Management and Communication Clifford W. Scherer and Napoleon K. Juanillo Jr.

221

12 Working along the Margins: Developing Community-Based Strategies for Communicating about Health with Marginalized Groups Leigh Arden Ford and Gust A. Yep

13 Social Support, Social Networks, and Health

241

263

Terrance L. Albrecht and Daena J. Goldsmith

14 Everyday Interpersonal Communication and Health

285

Rebecca J. Welch Cline

PART IV: ORGANIZATIONAL ISSUES (edited and with introduction by Katherine I. Miller) 15 Organizational Forms and the Provision of Health Care

319

John C. Lammers, Ashley P. Duggan, and Joshua B. Barbour

16 Stress and Social Support in Health Care Organizations

347

Julie Apker and Eileen Berlin Ray

17 Groups and Teams in Health Care: Communication and Effectiveness Marshall Scott Poole and Kevin Real

369

CONTENTS

18 Organizational Rhetoric and Healthcare Policymaking

ix

403

Charles Conrad and Holly Gene McIntush

19 Working Well: Communicating Individual and Collective Wellness Initiatives Patricia Geist-Martin, Kim Horsley, and Angele Farrell

423

PART V: MEDIA ISSUES (edited and with introduction by Roxanne Parrott) 20 Using Media Campaigns for Health Promotion

449

Charles Salmon and Charles Atkin

21 Looking Toward the Future: Health Message Design Strategies

473

Lisa Murray-Johnson and Kim Witte

22 Using Computers to Narrowcast Health Messages: The Role of Audience Segmentation, Targeting, and Tailoring in Health Promotion Rajiv N. Rimal and A. Dawn Adkins

23 Telemedicine: Expanding Health Care into Virtual Environments

497

515

Jeanine Warisse Turner

24 Health as Profit: Public Relations in Health Communication

537

Jeffrey K. Springston and Ruth Ann Weaver Lariscy

25 Popular Media and Health: Images, Effects, and Institutions

557

Kimberly N. Kline

26 Accessing, Understanding, and Applying Health Communication Messages: The Challenge of Health Literacy Jay M. Bernhardt and Kenzie A. Cameron

583

PART VI: LESSONS AND CHALLENGES FROM THE FIELD (edited and with introduction by Alicia M. Dorsey) 27 Opportunities for Health Communication Scholarship to Shape Public Health Policy and Practice: Examples from the National Cancer Institute Gary L. Kreps

28 Lessons Learned from the Field on Prevention and Health Campaigns Timothy Edgar, Vicki Freimuth, and Sharon Lee Hammond

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625

x

CONTENTS

29 Lessons Learned about Academic and Public Health Collaborations in the Conduct of Community-Based Research Roxanne Parrott and Carol Steiner

637

30 Ethics in Health Communication Interventions

651

Nurit Guttman Author Index

681

Subject Index

729

Preface

The field of health communication has developed tremendously within the last 25 years. Prior to that time, there was only a scattering of research published in widely dispersed publication outlets. There are now two journals devoted exclusively to the topic, but hundreds of other medical and social science journals publish related research on a regular basis. Lawrence Erlbaum Associates (LEA) began publishing the journal Health Communication in 1989. Although some of the early submissions left much to be desired and the first few issues were filled just in time for publication, that situation had changed drastically within a year or two. We now find a plethora of high quality submissions and have such a backlog of acceptances (even with only a 15% acceptance rate) that LEA decided to, for the third time, increase the size of the journal in 2001. A few years ago, a competing outlet, Journal of Health Communication, began publication. The competition has in no way, however, diminished submissions to either journal. The reason for this is because there is much good work being conducted in the field. Indeed, there is so much good work being conducted that there is now a need for a comprehensive outlet that summarizes the research in the area. That is the task of the current volume, Handbook of Health Communication. This volume covers many of the important areas of research in the field of health communication. Each chapter, written by a noted scholar or scholars in the relevant area, 1) reviews the theory and research in the area, both within the United States and internationally, 2) critiques that research and the methods that were used, 3) provides suggestions for future research on the topic (a research agenda for the 21st century); and 4) discusses practical implications of the line of research. The authors are from the fields of communication, medicine, and public health as well as government agencies and private health consulting arenas. In addition to covering specific content in each substantive area, the authors were asked to address their topics with the following issues in mind, although not every issue is relevant to every chapter: a) How does this area of research relate to patients’ health and well being or the health and well being of society at large?

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PREFACE b) How has this area of research advanced our understanding of the process of human communication? c) How do contemporary societal developments such as managed care impact this issue?

The book begins with an overview chapter, followed by five key sections. Each section begins with a brief introduction. The first section includes a chapter on the social construction of health and illness and chapters on theoretical perspectives used within the field of health communication. This is followed by a section that addresses issues in provider-patient interaction, such as studying provider-patient communication, communication skills and training, disclosure issues, outcomes of provider-patient interaction, and special populations. The following section focuses upon broader social and community health concerns, including prevention, risk perceptions, disenfranchisement, community organizing, and social support networks and health. The next section addresses such organizational issues as health care teams, social support for health care providers, the structure of health care organizations, and the rhetoric of health care organizations. The last large section focuses upon the media by addressing such topics as health information in the media, health campaigns, health PR (included because of the increasing numbers of health communication students going to work in health PR), health literacy, health message strategies, and information technology issues, including telemedicine. The book culminates with a discussion of “lessons from the field” and broader health policy issues. The authors of these chapters have extensive experience with efforts to apply health communication, with some having assumed leadership roles in national agencies to guide practice endeavors. The chapters talk about which findings are actually useful and applicable for practitioners and where research in the area should move. Ethical concerns are also raised. This book is targeted towards the fields of health communication, public health, nursing, and social/behavioral aspects of medicine. It is primarily addressed toward graduate student and faculty markets. It should be of interest to researchers, health care providers, health communication consultants and practitioners, and policy makers. We hope that these audiences find the book helpful and useful. It can be used as both a text and as a reference book. In addition to extending thanks to all of the authors of the various chapters, the editors would like to thank Linda Bathgate of LEA, who first suggested this volume, and Michie Shaw of TechBooks. They are responsible for bringing this book to fruition. Teresa Thompson Alicia Dorsey Katherine Miller Roxanne Parrott (all editors contributed equally to this work)

HANDBOOK OF HEALTH COMMUNICATION

1 Introduction Teresa L. Thompson University of Dayton

What can one say about an area of study that simultaneously allows one to look at the creation of shared meaning and at the impact of messages on health and health care delivery? Although those of us who study communicative processes would argue that all communication is inherently interesting, researchers who examine the impact of communication on health and health care delivery are privileged to focus upon processes of fundamental human import. After all, health issues are of concern to most of us throughout our lives. It may then be surprising that it took communication researchers some time to turn their attention to health issues. The Health Communication Division of the International Communication Association was founded in just 1975, and a division of the same name was made part of the National Communication Association (the largest association of people who study communicative processes) in 1985. This does not mean, of course, that health communication processes were not being examined prior to 1975. The study of health communication had already begun but was sporadic and scattered, with the exception of the early work of Barbara Korsch and colleagues (Korsch, Freeman, & Negrete, 1971; Korsch, Gozzi, & Francis, 1968; Korsch & Negrete, 1972). In addition, whereas some of the first studies were conducted by researchers whose primary interest was communication, more were done by those with interests in medicine, nursing, or, occasionally, social science areas other than communication. For instance, in Costello’s (1977) review of the area of health communication, only five of the published articles he cited had appeared in communication outlets, and three of those focused on therapeutic communication rather than health communication per se. Costello concluded that little of the existing research had been conducted by those within the field of communication, and Cassata (1977) echoed this theme. By the time Thompson wrote her 1984 review of communication in the health and social service professions, 105 out of the 325 works

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THOMPSON

she cited had appeared in communication publications and conferences. As the present volume makes clear, the study of health communication has since burgeoned, both in the field of communication and more broadly in academia and the professions. Some of the growth in research can be attributed to increased funding options for the study of health communication phenomena, but the appearance of outlets for the publication of health communication research is also a contributing cause. In 1989, Lawrence Erlbaum Associates launched the first journal devoted specifically to the study of communication in health care, appropriately named Health Communication, and 7 years later came the inauguration of the Journal of Health Communication. Both journals have provided opportunities for the dissemination of research on communication and health issues and have encouraged researchers to investigate this fascinating area. As scholars have been ignited by the interesting studies published by their colleagues, they have added to the research, causing it to grow exponentially. Numerous other social science and medical journals have also reflected the increase in interest, and it is no longer possible to succinctly survey research on health communication. Indeed, the chapters in this volume make clear the impossibility of covering the entire area of health communication in the same manner as in early reviews (see, e.g., Cassata, 1977, 1980; Costello, 1977; Kreps, 1988; Pettegrew, 1988; Thompson, 1984). Even Thompson’s (1984) review, however, although cut to 20 pages for publication, originally was 100 pages long. The authors of the chapters in this volume were constrained to just 40 pages on focused aspects of health communication, and most still found keeping to this limit a daunting task. In the case of every chapter, several books could have been written on the main topic. Because the goal of this handbook is to present a survey of health communication, the authors did in fact work and rework their chapters to conform to the page limits. It is hoped that this volume provides a worthwhile introduction to the various areas of health communication and encourages its readers, whether students, scholars, or researchers, to delve further into these areas on their own by using the representative (although by no means complete!) citations in each chapter. HISTORICAL PROGRESS

Comparing the early reviews and exhortations to research in this area with the reviews herein indicates the massive movements in scholarship that have occurred. It also indicates, however, that progress is still to be made. Costello’s (1977) review, for instance, focuses upon only four functions of communication in health care: diagnosis, cooperation, counsel, and education. Although, on the broadest level, these four functions are still apparent in the health communication research, health communication concerns have moved well beyond this. For instance, the chapters on organizational issues (Chapters 15–19) address communication concerns that cannot be limited to those narrow foci. The same is true of those scholars who bring a rhetorical or narrative perspective to the study of health communication. Costello’s discussion of research on media issues and campaigns as they relate to health was by far the smallest of his discussions, but that area of research is now among the most widely studied, as demonstrated by Chapters 20–26. Cassata (1977), too, focused his review on interpersonal aspects of health communication. Indeed, Cassata noted that “theories on the dissemination of health education and strategies for patient education still need to be explored by communication specialists” (p. 500). Three years later, Cassata’s (1980) review of the themes identified by Dervin and Harlock’s (1976) review of health communication research included only one that did not focus on interpersonal aspect

1. INTRODUCTION

3

of communication. He argued that “since the development of ICA’s Division of Health Communication, there have been no significant developments in health communication as a field of study” (p. 588). Cassata went on to outline criteria for a discipline, almost all of which the reader will find fulfilled in the chapters in this volume. Other notable changes have also occurred since the early reviews of health communication research. Thompson’s (1984) critique indicated numerous problems in health communication research: a simplistic conceptualization of communicative processes, findings that are not useful to practitioners, scholarship that did build on past research, a lack of theorizing, a lack of emphasis on issues likely to impact those of lower socioeconomic classes, a tendency to blame the health care professional for communication problems, and a focus on individual members of communicative interactions rather than the dyad. Again, the reader will find few of these problems evident in the research summarized in this volume, although several of the authors note that research still tends to avoid a focus on the dyad in favor of looking at (most commonly) the health care provider or (less commonly) the patient (or client or consumer). Thompson suggested a focus on health outcomes, which has now become apparent in some research (see, for instance, Chapter 7). A RESEARCH AGENDA?

In the flagship issue of Health Communication, several noted scholars were asked to suggest an agenda for health communication research. Although different scholars, of course, recommended various directions for research, it is encouraging to note how many of the suggestions they offered have now been fulfilled. The development of the field has come in a decade and a half (the editor of Health Communication is accepting articles for volume 16 as this introduction is being written). Barbara Korsch (1989), for instance, recalled reactions of dismay at the apparent audacity of the early researchers, who even proposed a scientific study of physician-patient communication. She wrote that “in the very beginning there was not even enough evidence to indicate that there were any features of doctor-patient communication that predictably influenced patient responses” (p. 6). Part II of this volume is full of discussions indicating such predictable influence. Korsch’s essay also suggested four key research tasks, all of which have now been addressed in the literature: (a) defining desirable outcomes of health communication (see Chapter 7), (b) exploring ethical considerations (see Chapter 30), (c) integrating some of the more isolated pieces of provider-patient interaction (see Chapter 4, although many of the chapters are pertinent to this task), and (d) treating innovative pedagogy for teaching communication skills (see Chapter 5). Similarly, Kreps’ (1989) essay in the initial issue of Health Communication recommended several directions that have now been taken. He cited Bowers’ (1969) exhortation to make communication research more socially relevant, and this goal has certainly been fulfilled in the research presented here. He also discussed Boulding’s (1956) guidanceadvocating alliances between the professionals and the academics (see Chapter 29) and described the need to reach out and impact health care policy (see Chapter 18). In yet another essay in that direction-setting issue, David Smith (1989) argued in favor of theoretical and methodological pluralism, a perspective that is reflected in Chapters 2 and 6, among others. “Messy” research, a focus on narratives, and consulting with research participants, all of which he advocated, are also recurring themes in this volume. Paul Arntson (1989), in his essay, focused on the role of dealing with uncertainty in health care. Uncertainty is perhaps best addressed in the health communication literature through an

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application of Austin Babrow’s (1992) problematic integration theory, which is discussed in several chapters (see, e.g., Chapter 8). Arntson (1989) and Nussbaum (1989) both advocated broadening our study of health communication beyond the traditional health care context. This issue is discussed in numerous chapters in Parts III through VI but perhaps nowhere better than in Chapter 14. Several other of Nussbaum’s suggestions have also been addressed, including the suggestions to focus on the elderly (see Chapter 9) and to examine more closely information flow in health care (see the chapters in Part V). OVERVIEW

Making use of several decades of research on health communication, the authors of the chapters in this handbook have attempted to summarize what we now know about communicative processes as they relate to health and health care and to recommend directions for future research. The book is divided into six parts. The first part presents a broad look at the contribution of theory to health communication, and the following parts organize health communication issues within contextual frameworks, which are traditionally used in the discipline of communication. All of the parts are preceded by a brief introduction. The first part, edited by Katherine Miller, addresses some introductory theoretical and metatheoretical issues. It includes a chapter by Richard Street that is likely to guide health communication research for years to come. It also contains a chapter by Barbara Sharf and Marsha Vanderford on illness narratives and a chapter by Austin Babrow and Marifran Mattson on theorizing about health communication. The second part, edited by Teresa Thompson, focuses on provider-client communication. Its chapters discuss such topics as communication skills training, outcomes of provider-patient interaction, disclosure issues, methods for studying provider-patient interaction, and special populations. Part III, edited by Alicia Dorsey, deals with social and community health issues, including community organizing, community health risk management, social support, everyday interpersonal communication and health, and marginalized populations. Part IV, edited by Katherine Miller, includes chapters on organizational forms, stress and social support, groups and teams in health care, organizational rhetoric, and communicating wellness initiatives. The next section, on media issues, is edited by Roxanne Parrott. It contains chapters on health campaigns, health message design strategies, narrowcasting health messages, telemedicine, public relations in health communication, health information in the media, and health literacy. The handbook closes with a unique section on lessons learned. Edited by Alicia Dorsey, it includes important contributions by individuals who have worked to combine academic and policy (practitioner) perspectives within the field of health communication. This section concludes with a chapter on ethics in health communication research. The field of health communication has achieved an important and useful body of knowledge capable of improving our understanding of all communicative processes as well as our understanding of the social intersections and implications of health issues. This handbook attempts to bring together the entire corpus of work related to the study of health communication in an effort to educate those new to the field, summarize research for those already knowledgeable about health communication, and promote future research on all aspects of the relationship between communicative processes and health and the delivery of health care.

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REFERENCES Arntson, P. (1989). Improving citizens’ health competencies. Health Communication, 1, 29– 34. Babrow, A. S. (1992). Communication and problematic integration: Understanding diverging probability and value, ambiguity, ambivalence, and impossibility. Communication Theory, 2, 95–130. Boulding, K. (1956). General systems theory: The skeleton of science. Management Science, 2, 197–208. Bowers, J. W. (1969). Implications of the New Orleans conference recommendations from the perspective of behavioral scholarship. In R. J. Kibler & L. J. Barker (Eds.), Conceptual frontiers in speech communication (pp. 184–189). New York: Speech Association of America. Cassata, D. M. (1977). Health communication theory and research: An overview of the communication specialist interface. In B. D. Ruben (Ed.), Communication yearbook 2 (pp. 495–503). New Brunswick, NJ: Transaction Books. Cassata, D. M. (1980). Health communication theory and research: A definitional overview. In D. Nimmo (Ed.), Communication yearbook 4 (pp. 583–590). New Brunswick, NJ: Transaction Books. Costello, D. E. (1977). Health communication theory and research: An overview. In B. D. Ruben (Ed.), Communication yearbook 1 (pp. 557–568). New Brunswick, NJ: Transaction Books. Dervin, B., & Harlock, S. (1976, May). Health communication research: The state of the art. Paper presented at the annual convention of the International Communication Association, Portland, OR. Korsch, B. M. (1989). Current issues in communication research. Health Communication, 1, 5–10. Korsch, B. M., Freeman, B., & Negrete, V. F. (1971). Practical implications of doctor-patient interaction analyses for pediatric practice. American Journal of Diseases of Children, 121, 110–114. Korsch, B. M., Gozzi, E. K., & Francis, V. (1968). Gaps in doctor-patient communication: Doctor-patient interaction and patient satisfaction. Pediatrics, 42, 855–871. Korsch, B. M., & Negrete, V. F. (1972, February). Doctor-patient communication. Scientific American, 227, 66–74. Kreps, G. L. (1988). The pervasive role of information in health and health care: Implications for health communication policy. In J. Anderson (Ed.), Communication yearbook 11 (pp. 238–276). Newbury Park, CA: Sage. Kreps, G. L. (1989). Setting the agenda for health communication research and development: Scholarship that can make a difference. Health Communication, 1, 11–16. Nussbaum, J. F. (1989). Directions for research within health communication. Health Communication, 1, 35–40. Pettegrew, L. S. (1988). Theoretical plurality in health communication. In J. Anderson (Ed.), Communication yearbook 11 (pp. 298–308). Newbury Park, CA: Sage. Smith, D. H. (1989). Studying health communication: An agenda for the future. Health Communication, 1, 17–28. Thompson. T. L. (1984). The invisible helping hand: The role of communication in the health and social service professions. Communication Quarterly, 32, 148–163.

I Introduction Katherine Miller [part 1] Texas A&M University

Teresa Thompson [part 2] University of Dayton

Alicia Dorsey [part 3] Texas A&M University

Katherine Miller [part 4] Texas A&M University

Handbooks serve distinct purposes within an academic discipline. In a sense, they provide both the history and the geography for a field of study, and the publication of a handbook suggests both that the discipline in question has a history worth recounting and can be seen as being “on the map.” This is clearly the case for the discipline of health communication. Our research has moved from relatively atheoretical considerations of a variety of health-related issues to sophisticated considerations that marry the discipline to important theoretical traditions in social sciences and the humanities. In short, health communication clearly has a history worth recounting. Similarly, the discipline of health communication has moved from a relatively undifferentiated and random landscape to one of complex peaks and valleys, rivers and lakes, shifting boundaries and borders. Thus, the cartography of health communication is also worthy of consideration. Both maps and historical documents require context, however, and the first section of this handbook provides that context. Specifically, the three chapters presented in this section lay out boundaries of the field, provide context into how the discipline of health communication has developed, lay out competing understandings of the theoretical underpinnings of our understandings, and argue for directions into future scholarship in health communication. In essence, these chapters set up the context for succeeding chapters on specific research on health communication—research considering

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PART I: INTRODUCTION

patient-provider interaction, social and community health, health in the media, and health care organizations. In her initial chapter introducing the reader to the Handbook of Health Communication, Teresa Thompson takes on the task of providing a brief historical account of the field as a whole and defining some of the outlines of the maps that now define health communication and that will shape health communication scholarship in the future. As she notes, although the field of health communication has only had formal status for three decades or so, questions that join the critical issues of interaction and well-being have been investigated for many years. However, the institutional history of health communication has moved at a very rapid pace, and the very existence of this handbook serves as evidence of the “coming of age” of the discipline. The second three following chapters of this section, then, serve to introduce the reader to some of the more theoretical issues that have engaged health communication scholars in recent years and that will continue to engage them in the future. Austin Babrow and Marifran Mattson provide a comprehensive map of the discipline in their consideration of Theorizing About Health Communication: Preliminary Considerations. Of course, the drawing of any map depends to some extent on the cartographers, and these mapmakers have used several important frameworks to guide their understanding of theory in the discipline. Specifically, they consider a variety of themes and tensions that have characterized health communication scholarship (interplay of the body and communication, science and humanism, idiosyncracy and commonality, and issues of certainty and uncertainty) and analyze those themes using a theoretical map of the field of communication developed by Robert Craig. This analysis, then, serves both to define and explore issues within health communication and to place those issues within the larger disciplinary matrix of communication. In the third chapter of this section, Illness Narratives and the Social Construction of Health, Barbara Sharf and Marsha Vanderford explore an important trend in health communication research that is clearly linked to some of the issues described in Babrow and Mattson’s chapter. Specifically, Babrow and Mattson note the shift in much communication research from an analysis of communication that emphasizes concepts such as “exchange” and “transmission” to one that emphasizes the constitutive role of communication in (re)creating social reality. Sharf and Vanderford explore this tradition by considering general concepts of the social construction of both illness and well-being and by looking extensively at one important approach within this tradition—the search for narrative understandings of physical, emotional, mental, social, and spiritual health. In the final chapter of this section, Communication in Medical Encounters: An Ecological Perspective, Rick Street examines one of the most studied issues in health communication—communication in medical encounters between providers and patients. This chapter is included in this introductory section rather than in the section on interpersonal relationships, however, because Street works to establish a comprehensive model that both incorporates extant research and points to important new directions for scholars. Specifically, Street proposes an ecological perspective on medical encounters that both explains key processes between patients and providers and places those processes within the social contexts that have a critical emphasis on both participants in the medical encounter and the encounter itself.

2 Illness Narratives and the Social Construction of Health Barbara F. Sharf Texas A&M University

Marsha L. Vanderford Centers for Disease Control

Rose, a 20-year-old college sophomore, was the designated driver for a group of friends coming home from a party one evening in the suburbs of Charleston, South Carolina. The group lost their way, and while searching for a familiar landmark, Rose failed to stop for a blinking red light. After a police vehicle tailed her car for a few miles, she was signaled to pull over to the side of the road. The police officer shined a flashlight on the three occupants of the car, asked to see Rose’s driver license, directed her to get out of the car, then queried, “What’s the matter with your eyes?” Though Rose explained that, because of a neuromuscular problem, her eyelid muscles sag when she is tired (a condition called ptosis), the officer accused Rose of driving while under the influence of alcohol or drugs, an allegation that Rose vehemently denied. The officer replied that she could see the effect of alcohol in Rose’s eyes. Rose explained that she suffered from a neurological disease called myasthenia gravis, in her case a congenital condition. Myasthenia gravis is caused by inadequate connections between the nervous system and the muscles, resulting in generalized muscle weakness and periods of extreme fatigue. Medications help to keep the symptoms from being overpowering and to slow degeneration but do not eliminate all the problems. Although Rose showed the officer a disability parking permit, the officer did not buy this explanation. Instead, she insisted that Rose walk a straight line, but being stressed and tired, the young woman had trouble with this task. Rose asked to be given a breathilizer test twice, but her requests were denied. In the end, the officer ticketed her for driving under the influence of alcohol (DUI), took her bail bond card, and gave her a date for a court appearance. Rose followed the advice of a disabilities lawyer, who arranged to have Rose’s DUI charges dropped in exchange for her having to take a test for a special driver’s license that permanently categorizes her as a person with a neuromuscular ailment and that requires an annual retest.

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Rose’s story is an excellent illustration of how matters of health and illness are socially constructed; that is, how bodily and psychological states of being are perceived and imbued with social and cultural meaning. In this chapter, we start with a brief overview of the social construction perspective, its bases in rhetorical and communication theory, and its application to communication referencing matters of health and illness. Following this introduction, we center our attention on socially shared health-related narratives, among the most common and powerful forms of symbolic construction. Although we refer to a widely diverse scholarly literature, we have not tried to present an exhaustive survey of the field. Instead, we refer to exemplary studies, including some of our own, that we find particularly instructive for understanding the health narrative approach. We then identify, discuss, and illustrate five functions of health narratives: sense-making, asserting control, transforming identity, warranting decisions, and building community. We conclude with several points to consider as the narrative perspective becomes increasingly incorporated into health communication scholarship. Throughout this chapter, we use Rose’s narrative to illuminate our conceptual explanations. EVOLUTION OF THE SOCIAL CONSTRUCTION APPROACH

Sociologists Peter Berger and Thomas Luckmann (1966) defined the social construction of reality as a dialectic between social reality and individual existence—in other words, a symbolically based tension between commonly accepted knowledge and personal understanding. Social constructions of reality are mediated through linguistic expression articulated among people and communities, shaped and recorded as history. The philosophical roots of the symbolic representation of reality are clearly evident in historical and contemporary rhetorical and communication theories. Ever since Plato in the Gorgias ridiculed the sophistic practice of teaching rhetoric as a vehicle of appearance rather than of truth, scholars have debated the role and purpose of communication. Two opposing positions have characterized the controversy: (1) communication ought to represent, to the extent possible, the material world and its truths and (2) language creates the world and its meanings. Two thousand years ago, the Sophists were vilified for holding a relative view of truth and teaching rhetorical skills designed to create appearances and influence public perception. The early Christian Church fathers looked with suspicion on later sophistic rhetoricians, believing that possession of religious truth was inherently persuasive without interpretation or elaboration. This controversy has endured up until the present. Thirty-five years ago, rhetorician Robert L. Scott (1967) argued that rhetoric is epistemic, a way of knowing. His argument presumes that truth is not immutable, able to be conveyed from one person to another, but rather a “set of generally accepted social norms, experience or matters of faith that serve as reference points in working out [human] contingencies” (p. 12) and that are “the result of a process of interaction at a given moment” (p. 13). In short, truth is created through the process of communication. Scott’s position has prompted a variety of responses, resulting in a debate between contrasting stances. One group of disputants claims that rhetoric is an inadequate vehicle for truth (e.g., Croasman & Cherwitz, 1982), whereas another group holds that all knowledge, even our understanding of physical objects, is created through language and intersubjective consensus (Brummett, 1976, 1982). A middle ground was laid out by Railsback (1983), who proposed that material reality is separate from language but not meaningful without symbolic interpretation. Her outlook provides a framework for examining the tension between material reality and the symbolic representation of health, illness, and disease. In a recent review of communication theories, Robert Craig

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(1999) reiterated the dialectic of acquiring and communicating knowledge of reality in slightly variant terms. Craig differentiated between a transmission concept that posits communication as the transfer of information in the form of messages “from one mind to another” (p. 125) and a constitutive approach that conceptualizes communication as a “process that produces and reproduces shared meaning” (p. 125). Elaborating upon this basic distinction, he made a case for using the constitutive or social construction perspective as a “metamodel” encompassing all the various particular theories that attempt to explain how communication works. In the context of health, illness, and medical care, the application of the constitutive model of communication reveals the complexities of moderating between scientific truth derived from the physicality of organic disease and the materiality of bodies, and the meanings of human suffering experienced by patients, their loved ones, and the health professionals who care for them. The social construction approach to health communication has primarily emerged as a reaction to the biomedical perspective, long dominant in the health care arena. Similar to the ancient and contemporary schisms in communication theory we have described, the medical community has historically divided communication about health into two kinds of discourse. The first kind uses objective language to present traditional,1 biomedical information about organic, verifiable, measurable signs of disease conveyed in the authoritative voices of physicians and other health providers, evidenced by clinical signs, laboratory tests, imaging, and other technologies. The second kind uses subjective language to talk about the internal, nonverifiable experience of illness, of being in dis-ease. People undergoing health problems and their families develop their own understandings about physical symptoms, revealing health beliefs, augmented with personal and cultural significance, that transcend the material signs relied upon by clinicians. In medical contexts, the scientific detachment and empiricism of practitioners is valorized, whereas the subjective experiences of patients, reflecting moral, spiritual, and social elements of illness, “inevitably connote insubstantiality, something ‘existing only in the mind’ ” (Donnelly & Brauner, 1992, p. 481). Patients whose accounts stray from physical symptoms, the review of bodily systems, and the medical chronology are characterized as “poor historians” (Brody, 1987) who distort reality with subjective perception and tangential interpretation. However, over the past 25 years, many participants in the health care system, including clinicians, health educators, social scientists, medical humanists, and patients, have challenged biomedicine’s hierarchical epistemological claims, asserting that the “scientific method is only one of several routes to knowledge” (McWhinney, 1989, p. 38). Social psychologist Elliot G. Mishler (1981) laid the foundation for seeing the implications of social construction theory in the context of clinical care. Starting with the proposition that “the world as a meaningful reality is constructed through human interpretative activity,” Mishler explained that “whether or not a particular behavior or experience is viewed . . . as a sign or symptom of illness depends on cultural values, social norms, and culturally shared rules of interpretation” (p. 141). Thus, observation of the same biological phenomenon, such as Rose’s heavy-lidded eyes and inability to walk a straight line, is imbued with quite a different meaning for the police officer, for Rose’s friends, and for Rose herself. Furthermore, Mishler (1984) helps us to understand that within a clinical encounter, although the practitioner and the patient are ostensibly discussing the same physiological

1 Labeling biomedicine as “traditional” is itself an act of social construction. Many of the healing or treatment modalities referred to as “alternative” or “complementary” long predate regular medicine.

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symptoms and reported history, there is nearly always a contrast, and often outright conflict, between what he calls “the voice of medicine” and “the voice of the lifeworld.” Rose has enjoyed a positive relationship with Dr. Harvey, her neurologist, for several years. Nonetheless, there are inevitably significant differences between how the doctor understands the manifestation of myasthenias gravis in his patient as an organic process and Rose’s experience of the impact of the disease on her intellectual, social, and emotional life. For instance, as the voice of medicine, Dr. Harvey is concerned with quantitatively assessing changes in the degree of muscle weakness in her eye. For Rose, the voice of the lifeworld, her concern with optical fatigue is focused on how it will impact her working on a computer screen under stress and thereby affect her performance on the Graduate Record Exam. From a social construction perspective, the work of health communication scholarship is to unpack the sociocultural sources of symbolic usage in health care, for people often accept it as natural and inevitable without considering how meanings emerge from contextual and political sources in ways that mold health beliefs and behaviors, clinical judgments, and organizational routines.2 Two influential works exemplify how the voices of medicine and of the lifeworld have become commingled within everyday discourses. Social critic and cancer survivor Susan Sontag’s (1978, 1988) astute comparative analyses of tuberculosis in the 19th century and cancer and AIDS in the 20th century demonstrate the pervasiveness of disease-related connotations in many nonmedical spheres of life as well as how language shapes the identities of people suffering with those diseases, often in negative, problematic ways. For example, over the past 30 years, cancer metaphors have been used to describe the Watergate coverup of the Nixon administration, the scandalous personal behaviors that propelled the impeachment of Bill Clinton, and, most recently, rhetoric from the Bush Administration concerning terrorism in the United States (e.g., expressions of commitment to keep terrorist cells from growing). Sontag claimed convincingly that such insidious verbal comparisons contribute considerably to the suffering of people with cancer. Pushing the direction of Sontag’s work further, cultural studies scholar David Morris (1998) indicated the limits of the biomedical model of health and disease in his discussion of postmodern illness—“situated at the crossroads of biology and culture” (p. 71). In his view, postmodern illness is characterized by ambiguity of existence, is reflective of lifestyle and politics, and is fragmentary and interdisciplinary. Morris cites such biocultural manifestations of postmodern illness as medically mysterious diagnoses like chronic fatigue syndrome, depression, and attention deficit disorder, as well as equally mysterious modes of therapy like pain clinics and modes of complementary healing (mysterious insofar as they resist verification through empirical techniques).3 Cross-cultural scholarship has been particularly useful in revealing the misunderstandings that arise from conflicting cultural constructions. The work of Arthur Kleinman (1988; Kleinman, Eisenberg, & Good, 1978), a psychiatrist and medical anthropologist, has been pivotal in illustrating how illnesses are understood, explained, and acted on through ethnocultural lenses, which he calls explanatory models. His examples show how differences in explanatory models in clinical settings often increase patients’ suffering and sometimes 2 While a wide variety of methodological approaches have been used in social construction work, depending on the nature of the questions asked, there has been particular emphasis on qualitative, naturalistic methods, including archival explorations, discourse analysis, depth interviewing, autoethnography, and participant observation. 3 No wonder, then, that popular fictional media icon, Mob boss Tony Soprano, is afflicted with psychosomatic anxiety attacks, necessitating weekly appointments with a psychiatrist.

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have life-threatening results. An especially striking application of Kleinman’s conceptualization of cultural constructions in conflict is journalist Anne Fadiman’s (1997) tragic ethnographic description of a young girl caught between the American medical system’s approach to epilepsy and her Hmong immigrant family’s comprehension of the condition they called “the spirit catches you and you fall down.” Even modern Western societies that ostensibly share the tenets of biomedicine interpret the practice of medicine in culturally distinct ways, resulting in strikingly different clinical discourses and modes of care (Payer, 1988). To better understand the confluence of the biomedical and sociocultural, the material and the symbolic, let’s briefly consider the multiple and changing ways in which the concept of health is discussed and applied in everyday contexts by various agents. One of the most common definitions of health is in terms of its opposite: Health is the absence of disease. But health is not necessarily such an absolute state. On the popular television drama The West Wing, the fictional President Bartlett, an ostensibly astute, ethical, and tough-skinned chief executive, suffers from multiple sclerosis, a degenerative disease that threatens his physical and mental stamina. The public revelation of this illness raises questions that have been asked of politicians in real life as well. Is the president sufficiently healthy to continue his role as a national and international leader? What reasons might have justified the president’s not disclosing his health status from the beginning? In fact, we often speak of being healthy in relative terms. We might say someone is healthy who has a chronic illness or permanent disability but is able to carry out key functions of daily living and enjoy mental well-being despite the presence of pain and physical limitations. Conceptualizing health in this way makes explicit that there are psychological and spiritual components of health integrated with the physical components. In another common usage, the term healthy is used to characterize what is found in nature. Although manufactured pharmaceuticals have been increasingly relied upon to protect against or clear up infections and allergic reactions, decrease pain, and even rejuvenate bones and other body tissues, their undesired side-effects have led to the widespread popularity of herbal remedies, accompanied by an ideology that equates what is “natural” with what is healthy, even if substances found in nature also have unintended, unpleasant consequences. This usage of the term contrasts with the way health care is increasingly viewed as an economic commodity. Consumers purchase it, providers supply it, third-party payers and health care organizations manage it, and primary care practitioners coordinate and guard entry to more specialized modes of treatment. Individuals “shop” for doctors (often from a list of those who are “preferred” financially), and physicians find ways to “fire” problematic patients. A variety of practitioners provide care that is considered alternative (or, more recently, complementary) to what is known as traditional or regular medicine, even if the alternative treatments have existed for centuries, predating modern biomedicine. When the concept of health is applied to populations or communities instead of individuals, other indices may come to the surface (e.g., safety from violence, adequate nutrition and shelter, and availability of meaningful employment). At times, the health concerns of the “public” may conflict with the rights of individuals, as in the case of vaccinations or the segregation of infectious citizens. The several ways in which the concept of health has been situationally applied at a symbolic level clearly have serious material consequences—financial, physical, and social—for an array of stakeholders, including patients, caregivers, insurers, clinical scientists, policymakers, and guardians of public health. In short, materiality and meaning are commingled in the social construction work of health communication scholars.

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NARRATIVE APPROACHES TO HEALTH COMMUNICATION SCHOLARSHIP

As we have indicated, the social construction approach to health communication can serve as a conceptualization and method of analysis for a wide variety of issues and purposes. In this chapter, we focus primarily on a particular type of social construction, the application of the narrative perspective to health contexts, especially in the form of illness narratives. Our objective is to explain and illustrate how viewing narration as the defining paradigm of human communication (Fisher, 1987) illuminates common health-related discourses. Although we might have used this perspective to concentrate on clinical interactions, drug advertisements, the policies and practices of managed care, or other facets of health communication, much of our own previous work has investigated discourses reflecting the experience of illness, both at a personal level and as it is represented in popular media, and so we have chosen this kind of discourse as our exemplar.4 Following rhetorician Walter Fisher’s argument that humans are homo narrans, the species distinguished by its ability and predisposition to tell stories, it is our assertion that the most common way of communicating our personally constructed ideas of the realities we experience is through the social sharing of narratives—stories about our lives. Narratives not only reflect individual views of the world but also provide explanations for why things happen in certain ways. They help us to recount people and events of significance, account for motives, causes, and reasons (Fisher, 1987), and are the primary means for involving others in our own world view (Bruner, 1986). Such stories regularly occur in many kinds of contexts. Some are carefully crafted accounts conveyed in public settings and mass media, others are informal tales incorporated into ordinary conversations. As a form of interaction, the illness narrative implies a reciprocal role for listeners, namely, to witness—through attentive listening, acknowledgment, understanding, and perhaps empathy—the suffering of others (Kleinman, 1988). Attention to personal narratives began to emerge in health communication scholarship concurrently with the development of a conceptual distinction between disease, defined as organic malfunctions and pathological processes whose signs and symptoms typically can be observed and quantitatively assessed; and illness, the patient’s experience of disease or ill health (Kleinman, et al., 1978). Ahmed, Kolker, and Coelho (1979), among others, posited a third concept, sickness, to talk about the labels, roles, and societal expectations projected onto diagnosed individuals. Illness is the phenomenon studied by health communication scholars who are interested in the ways that individuals, and sometimes groups, portray their experiences of ill health in specific, individualized contexts. Narrative-based investigations extend the discussion of health and disease beyond the biomedical to encompass the meaning that patients ascribe to their illnesses as they affect roles, relationships, and identities, as well as levels of meaning that reflect social, organizational, ethnocultural, and familial assumptions and influences (Sharf & Kahler, 1996). Clinical medicine has also been shown to employ narrative in its most fundamental activities, including clinical rounds and case reports (Good, 1994; Hunter, 1993; Poirier & Brauner, 1988) and chart notations (Poirier & Brauner, 1990; Poirier et al., 1992), but 4

It will be evident from the range of references cited that we do not claim the health-related narrative as the sole province of health communication. To the contrary, this research on this topic is quite interdisciplinary. Nonetheless, we strongly believe that health communication scholars have made significant contributions to its study.

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notably without representation of the patient’s voice (Donnelly, 1988). Patients’ accounts of their illnesses, Mishler’s “voice of the lifeworld,” are proving to be significant alternate “routes to knowledge,” serving as a means to comprehend the storytellers’ construction of their illness experience. As increasingly depicted through ethnographies, patients’ writings, and media portrayals, such stories give legitimacy to the often unacknowledged expertise of patients, help to establish identity (both of individual patients and groups who share a common health concern), and provide unrivaled insight into the experience of illness (Vanderford, Jenks, & Sharf, 1997). Video representations of patients’ voices are starting to have a significant impact on the education of physicians (Makoul, 1999; VIA Website). Like other types of stories, illness narratives are implicitly appealing and comprehensible because they make use of familiar elements with which we have learned to shape our perceptions of the world. Such elements include characters, the people who enact the events of the story (for example, heroes, villains, victims, and innocent bystanders)5; scenes, the settings in which key events occur (e.g., a clinic or hospital, home, the workplace); motives, the thoughts, emotions, and circumstances that impel characters to take certain actions (for example, fear, concern, anger, accommodation); chronologies or time frames (which emphasize past, present, or future); plots or dramas, the meaning that emerges from how key events and characters’ actions are configured in relation to one another (Charon, et al., 1996; for example, battling disease, accepting one’s fate, or being empowered to make choices and take action); and narrator’s voice or point of view (for instance, a story is always told from someone’s perspective, thus necessarily not representing other perspectives). Finally, as important as the story elements that constitute a narrative is the telling of the story—the process and style of communicating the narrative. Implicit in the way stories of sickness are told are underlying values, such as the desire for information, personal control, recognition of individuality, or enjoyable quality of life. Lack of congruence between the explicit or implicit values within the stories of practitioners and patients is often the source of significant problems in clinical care (Geist & Gates, 1996; Vanderford, Smith, & Harris, 1992). Patient accounts compensate for the partiality and objectification of medical records, creating a more complete picture of illness, health, and disease. Health communication scholars have approached illness narratives as psychosocial maps, revealing the storytellers’ emotional and cognitive journeys. These narratives challenge the voice of medicine as the primary means of understanding health and disease. To interweave both the voice of medicine and the voice of the lifeworld into a consistent, mutually agreed upon story that functions as the basis for clinical care and decision-making is a primary communicative goal, albeit one that is often difficult to achieve (Geist & Dreyer, 1993; Sharf, 1990). Sociologist Kathy Charmaz’s (1999) discussion of her research on patients’ accounts of suffering due to chronic disease illustrates the range of communicative experiences of interest to narrative scholars. “[Suffering] is of the self and it is social. As suffering spreads out, it shapes social relations and limits social worlds” (p. 365). It changes the interaction that sufferers have with others and the roles they can play. As a result, the patient’s very identity is affected. “Although meanings of suffering may begin with the body, they

5 Stories of sickness sometimes treat the body or body parts as characters independent of the person to whom they belong (Cassell, 1985).

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include emotions, accompany losses, and thus, can arise through social as well as corporeal existence” (p. 366). Patients’ changing relationships, interactions, roles, identities, emotions, losses, and growth are the elements of dramatic stories, naturally drawing the attention of narrative scholars (Vanderford et al., 1997). In defining how the application of narrative thought has changed the practice of health care ethics, Jones (1996) pointed to the importance of the particular circumstances and situational details that form the basis for inductive analysis; the acceptance of complicated human emotions, behavior, and connections; and the nonhierarchical recognition and support of people’s capacities “to construct their own life stories and make their own decisions” (p. 268). In their analysis of narratives that unfolded during a support group for epileptic patients, Arntson and Droge (1987) identified four functions of health-related storytelling, that have since been identified in subsequent studies of individuals’ illness accounts. Illness narratives help patients (a) make sense of health and disease, (b) assert control in the midst of physical and psychological losses, (c) transform their identities and social roles as a result of altered health and disease, and (d) make decisions about their health. As illness narratives increasingly move beyond clinical and interpersonal levels of communication and are shared in broader, more public venues, they serve a fifth function: to solidify health-based communities with common visions and social agendas. These five socially constructive functions of health-related storytelling provide the organizational structure for the remainder of this chapter. In summary, the narrative approach to health communication highlight the meaning of the illness experience, primarily to the individual or group with a particular health problem and secondarily to others who witness or read those personal accounts. All who participate in the telling or hearing of an illness narrative help in creating its significance and act as its interpreters. NARRATIVE AS SENSE-MAKING

In the incident described at the beginning of this chapter, the young woman appears to have been unfairly treated. But had the same events been narrated from the police officer’s perspective, that is, from the viewpoint of an individual charged with looking out for reckless drivers, the meaning of the anecdote would almost certainly be very different. After all, Rose’s ailment is, for practical purposes, a largely invisible disability (Matthews & Harrington, 2000) and therefore easy to misinterpret. Unlike paralyzed people confined to wheelchairs or blind people who walk with white canes or guide dogs, Rose appears “able-bodied.” Heavy-lidded eyes due to muscle fatigue constitute a visible but rather subtle sign that the officer noted and interpreted as evidence of alcohol or drug intake. As an alternate narrator, the officer would provide a strikingly different interpretation of this same physical symptom. Most narrative research focuses on the sense-making function of stories—the ability of narratives to create meaning of random events, people, and action. Organizational theorist Karl Weick (1995; see also Miller, 2001; Miller, Joseph, & Apker, 2000) has developed a conceptualization of the process of sense-making that emphasizes the pivotal role of communication and includes attributes particularly relevant to the creation of narratives that enable us to cope with chaotic or confusing conditions often encountered in our everyday lives. According to Weick, sense-making is, among other things, retrospective (is affected by our past experiences); emergent (needs to take into account new experiences);

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interactive (is influenced by social relations and information gained from others); and driven by plausibility (focuses on “what can account for sensory experience, but what is also interesting, attractive, emotionally appealing, and goal relevant” [Fiske, 1992, p. 879]). Weick also points to the strong reciprocal connection between situational sensemaking and one’s notions of personal identity; this link will be explored below as one of the key functions of narrative. Considering these characteristics, much of the development of social and personal meaning is inherent in the creation of good stories. Fisher (1985) asserted that narratives are focused on “words and/or deeds—that have sequence and meaning for those who live, create or interpret them” (p. 2). Individuals are believed to make sense of unexpected, random events as they construct accounts of what they experienced, connecting people and events to create some understandable pattern (Churchill & Churchill, 1982). Critical to this sense-making activity is the distance in time between the actions in the story and the “telling” of it in retrospect. Recalling the events in hindsight, the storyteller can “assume a reflective, observant posture toward those events in a way that was impossible when the events were in progress.” (Brody, 1987, p. 14).6 Storytellers can interpret events, ascribe meanings, justify actions, and make links in retrospect that are less likely to be discerned when the narrator experiences events in real time. Although the sense-making role of storytelling is apparent in accounts in which illness does not occur, this function is especially significant for patients whose lives have been altered by the suffering that results from severe chronic or acute disease or disability. While the details of individual illness narratives are personal and context-specific, scholars who study patients’ stories as a discursive genre have derived general categories of meta-narratives based on how the storytellers make sense of the illness experience. Literary analyst Anne Hunsaker Hawkins (1993) calls this genre pathography, which she asserted has spawned four major types of myths or stories: those of rebirth and the promise of cure, those of battle and journey, those of dying, and those of health beyond medicine (i.e., health through alternative modes of healing). Similarly, sociologist Arthur Frank (1995), himself a survivor of heart disease and prostate cancer, argued that “wounded storytellers” create stories of restitution or recovery, stories of chaos or illness with no hope of recovery, and stories of quest or journey in which the suffering engendered by illness leads to larger purposes or understandings. Whatever the category, narrative scholars agree that the very voicing of an illness experience in story form is itself an act of healing and agency. By virtue of providing a reason for the person’s illness experience, a narrative has the potential to diminish suffering (Brody, 1987) and to allow the person to assume accountability for him- or herself and perhaps others in similar circumstances (Frank, 1995). Naturally, not only people diagnosed with a disease but their family and friends are affected by the illness experience. As caretakers, providers of social support, and fellow sufferers, people in a patient’s extended network create their own explanations of events and experiences. Although narrative scholarship has not sufficiently explored the comparative accounts of patients and their loved ones, a few excellent examples exist, such as two remarkable, intertwined narratives in which a surviving life partner and a partner dying of breast cancer recorded concurrent impressions of shared events over a 2-year period from diagnosis through death (Butler & Rosenblum, 1991). Writes Sandy, the surviving partner: 6

In some renditions, the narrator is not only relaying past events, but is looking to the future as well. In cases where death appears to be imminent, the reduction of distance in time and psyche between the narrator and the yet-to-be experienced resolution often adds to the power and poignancy of the narrative. See, for instance, Christina Middlebrook’s account (1996) of coping with metastatic breast cancer.

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Last night I wrote, “I am excused. I excuse myself. Cancer is what I do now.” Cancer is my work. Barbara’s mood swings, doctor’s appointments, medicines. My feelings. Our writing together. All of it has become my central activity. Cancer swallows up the air of my life and insinuates its presence everywhere. Nothing remains untouched. Inviolate. (p. 48)

Sense-making may also differ among people with seemingly similar illness experiences. A striking example of the power of narrative to help make sense of illness is found in contradictory accounts of women with breast implants (Vanderford & Smith, 1996). In an extended study of patients’, physicians’, and popular press accounts of the breast implant controversy, the stories of women who blamed subsequent illnesses on their implants are compared with the stories of those who also had undergone synthetic breast surgery but did not hold their implants responsible for health problems. The latter group did not blame their problems on implants because their health issues fit within a larger narrative concerning the imperfection of medicine. In one account, a woman tells a story that integrates her understanding of general medical risks with her personal experience: They told me in ‘77, “This [implant] is going to last forever.” I didn’t question it any further. It didn’t dawn on me to question it further, but I do remember them saying that, because I had a good rapport with the doctor. The doctor that I had was the head of plastic surgery at Duke at that time. Dr. X, you know, he just laughed about it. And I said, “You mean when I die they are still going to be there?” And he said, “You are going to be laid out, they are still going to be up there.” I mean, that was their attitude at that time. And of course they were mistaken. But I don’t have any, I don’t know. It was an error, nothing in our bodies last. A hip replacement is silicone, it doesn’t last (p. 82)

This storyteller integrates the rupture of her implants into the natural evolution of knowledge about medical devices and health risks. In this account, the physician is not a villain; his knowledge was just incomplete, albeit the best possible at the time. For the narrator, the risk of a rupture is to be expected as the natural consequence of the deterioration of medical devices. In contrast, women who blamed their implants for a host of illnesses generated stories in which no reason other than their implants could account for their health problems. The chronological relationships developed in the accounts pointed the blame directly on the implants (and indirectly at the plastic surgeons who implanted them), as in the following excerpt: I started having problems a few weeks after that with the implants. . . . The implants were placed directly in, and then three weeks after that I had an infection in where the skin turned real black . . . I mean problem after problem . . . I kept getting infections . . . and there was a bunch of lymph nodes . . . they just kept swelling up . . . swelling of the joints and dryness in your eyes, your mouth . . . I’ve had a rash that would come upon my hands and my feet . . . my dermatologist didn’t know where it was coming from. . . . Since all this started with the implants, I get colds easier and infections, like these little skin cancers they’ve been freezing off . . . nothing heals, I mean every time I turn around they have to put me on antibiotics to get anything to heal. . . . My menstrual cycle . . . has been irregular for a little over a year now . . . (Vanderford & Smith, 1996, p. 32)

This woman’s story highlights the implant procedure as the point at which never-before experienced symptoms and health problems begin to occur.

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As these excerpts illustrate, narrative sense-making frequently involves assigning responsibility and sometimes blame, a process of attribution that occurs both at the level of personal reasoning about illness as well as at more public levels, such as a health campaign. As rhetoricians William G. Kirkwood and Dan Brown (1995) point out in their study of a variety of nontechnical public communications about cancer, heart disease, drug addiction, and so on, questions of responsibility interwoven into particular health-related narratives (Is being overweight an issue of heredity or lifestyle? Is cancer prevention a matter of individual surveillance or environmental regulation?) are as much rhetorical as scientific. These messages are constructed to vary with the audiences to whom they are addressed. Their objectives include fostering healthy behaviors among the undiagnosed public, easing feelings of guilt among and empowering those who have been diagnosed with a disease, and motivating favorable or unfavorable treatment of the sick (e.g., people with AIDS or smokers). In effect, how causative factors of disease are accounted for provides scenarios of innocent and culpable victims, careless perpetrators, or factors of nature or chance beyond human management. Yet, even in the midst of unavoidable disease or disability, the very act of generating a story allows the narrator a certain degree of agency. NARRATIVE AS ASSERTING CONTROL

In recalling her childhood experiences of growing up with myasthenias gravis, Rose has vivid, painful memories of being teased by schoolmates because she had a difficult time with many ordinary physical activities. As a way of responding to this situation, Rose chose to give a fifth-grade oral report on this disease in which she described what the problem is and how it affects people who have it without specifically mentioning that she herself suffered from it. She remembers this experience with a sense of satisfaction, because she felt she had managed to educate her peers and reduce the teasing without directly sacrificing her privacy. In short, she had discovered her own way to exert control over a hurtful situation through a form of narration that she had chosen. However, 2 years later she experienced the opposite effect. When her medication dosage suddenly failed to manage her symptoms, she became very ill and needed to be hospitalized for nearly 6 weeks, a very difficult episode for a seventh grader. Although she asked the school not to disclose to her classmates why she was in the hospital, her science teacher did exactly that, disregarding her request. In this instance, the suffering from being physically sick was increased by a loss of control of personal information—what she came to regard as a usurping of her personal narrative. The relationship of storytelling to increased perceptions of control is especially important in illness accounts. The experience of severe and/or chronic illness strips away multiple sources of an individual’s perception of control within the realm of his or her own life. A sense of suffering can be exacerbated by varying degrees and kinds of lost autonomy. Some forms of loss are physiological but also have emotional repercussions, such as shame, embarrassment, and frustration. For instance, prostate cancer survivors frequently experience loss of control over their bladders and sometimes their bowel functions. Women who have undergone a mastectomy, in addition to the more obvious change in appearance, may experience a loss of range of arm motion, a loss of strength, and a permanent severe swollenness of the affected arm (a condition called lymphedema). People with epilepsy experience unpredictable seizure activity, losing control of their entire bodies and mental concentration. Those with myasthenias gravis, like Rose, are subject to debilitating bouts of fatigue and weakness. Severe and chronic illness frequently is accompanied by physical restrictions which, in turn, leads to the diminishment

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of social relationships. Patients may no longer be able to work, socialize, or participate in as wide a range of activities as they did previous to the onset of disease. Further contributors to suffering often include a reduction in financial resources, a loss of personal energy, and the need to forgo other pursuits in order to focus primarily on pain relief or rehabilitation. Compounding these losses is an increased dependency on family caregivers, medications, and health care providers. The patient role has traditionally been passive, requiring that individuals seek medical help and comply with their physicians’ recommendations (Brody, 1980; Smith & Pettegrew, 1986). Medical diagnosis and categorization has the potential to stigmatize patients as well as restrict their opportunities for recovery, development, and empowerment (Arntson & Droge, 1987). All these sorts of deficits may combine to create a “loss of certainty . . . loss of certainty means losing the collective myth of a ‘taken for granted’ future as well as the personal belief in sustained health” (Charmaz, 1999, p. 366). Assuming that authorship allows individuals with health problems to reassert some control in the midst of multiple losses, Frank (1995) explained that “seriously ill people are wounded not just in body but in voice. They need to become storytellers in order to recover the voices that illness and its treatment often take away” (p. xii). Turning one’s experiences into a narrative creates order by placing previously unexplainable events into relationships. The act of ordering and predicting the future is an act of control (Churchill & Churchill, 1982), as is recounting the history of previous occurrences. Rose’s remembrances of childhood illness narratives illustrate the importance of constructivist issues including: Whose voice is narrating the story? What information is selected for inclusion or exclusion and for which audiences? An additional significant aspect of authorial control is sequencing. A narrator imposes order on experience by creating a chronology of events: [She] is required to sequence the events of the story temporally: “A” happens, then “B,” then “C.” These temporal associations may then well turn into cause-effect relationships. The story’s “illusion of sequence” can impose order on a chaotic, if not random set of events. [For example,] scientifically there may be no explanation for [the occurrence of symptoms or side effects from medication]. By placing these events within a narrative, they may longer be so unpredictable for the narrator. (Arntson & Droge, 1987, p. 161)

By creating order and attributing causes for symptoms and disease, patients may regain a measure of control, denying the dominance of disorder and unpredictability. Importantly, illness narratives sometimes serve as vehicles for patients to project control into a future in which, as the disease or disability accelerates, they might no longer be able to express their choices to physicians and family members. Such stories told to family members or health care practitioners can serve as an advanced directive in place of institutionalized documents. Although for some, dying of an illness is characterized as losing a hard-fought struggle for life, for others, being able to plan how death occurs (i.e., enabling a “good death”) is one of the ultimate measures of asserting control. A man diagnosed as HIV positive explained: “If you are talking to your doctor and you tell him that you don’t want to be saved by any kind of machine that would help you breathe or whatever, the doctor ought to be able to put that in the chart and he ought to be able to respect your wishes on that point . . . if my heart gives out, don’t start it again “(Vanderford et al., 1992, p. 132). Sullivan’s (1997) analysis of women coping with living with breast cancer also described patient narratives in which women asserted control in the midst of terminal illness.

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Like the man with HIV, these women described themselves acting in ways that projected their wills into situations in which they would later lack agency. For example, they told the interviewer how they had planned and arranged their own funerals, written their personal obituaries, and even arranged care for their pets for after their own deaths. As characters taking action in their own life stories, these women featured themselves as agents in control, despite the impending loss of life itself. In short, narrative form puts the “I” back into a person’s understanding of his or her life. Rather than silently comply with the initiatives and orders of others, the patient narrator asserts him- or herself as agent: “The actual narration of a story, saying the words in the appropriate form, makes a place in the world for [the] narrator” (Churchill & Churchill, 1982, p. 77). Creating a story also allows the narrator to emphasize certain aspects of who that agent is, and how illness has influenced that persona. NARRATIVE AS TRANSFORMING IDENTITY

How does Rose make sense of her illness in telling her own story? Would she define herself as disabled? Depending on whom she’s speaking with, she might describe how she faces moderate restrictions in physical exertion and makes regular adaptations in various aspects of her life, such as the kind of work she does or how much rest she needs. Yet her mom told her a long time ago that everyone is born with or develops some kind of imperfection, so she doesn’t consider herself particularly special and feels only occasionally inconvenienced. Although obviously aware that she suffers from a chronic disease, she doesn’t label herself as “sick,” nor does she feel impeded from living her life in ways that she chooses; hers would likely be a narrative about a busy psychology major, nursery school instructor, and fun-loving young adult. Of course, there have been times in her life when the official diagnosis of her disease, sanctioned by a neurologist, has been a necessity, creating a different version of her narrative. For instance, in the large high school she attended, a special designation of disability was needed to excuse her from certain physical education requirements and to ensure a schedule that limited the distance she would need to walk between classes. Her handicapped parking permit allows her to park her car near the buildings where she needs to go for university classes or business. Because of her ailment, she receives tuition assistance from the state of South Carolina. In these cases, an account that labels her as a disabled individual is necessary and welcomed. On the other hand, she would much prefer to focus on stories that do not categorize her primarily as a person with myasthenia gravis in her social and professional identities. Narratives not only serve as a means to assert agency for persons whose control has been diminished but also provide “wounded” storytellers with a means to reshape their identities, either in functional, enabling ways or, alternatively, with an emphasis on loss, trauma, or impairment. Churchill and Churchill (1982) describe the act of storytelling as an approach to self-knowledge: “Storytelling . . . is a mode of coming to know ourselves. . . . [s]tories are devices which shape agents and events into some intelligible pattern. They weld actors to their actions and doers to their deeds” (p. 74). Chronic illness often disrupts a person’s previously established self-image (Corbin & Strauss, 1988). As individuals experience dramatic changes in their health and “realize the crisis has lasting consequences for their lives” (Charmaz, 1994, p. 269), they also face “identity dilemmas,” including changes in roles, relationships, social circles, and activities. Physician Howard Brody (1987) explains that illness threatens a person’s “continuity of memory” or narrative

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coherency when the individual’s confidence in his or her ability to carry out a “rational life plan” is shaken. When severe and/or chronic illness disrupts one’s life plan, “getting better” may not be possible through physical cure but instead requires the creation of a revised life story with a modified identity; “healing involves moving beyond thoughts of recovery and survival to the creation of a self that can ‘thrive”’ (Sullivan, 1997, p. 50) despite impairment, pain, or a more uncertain future. A familiar example of a transformative story that underscores identity issues is Christopher Reeve’s (1998) first-hand account of his physical and existential journey from movie star and Superman persona to quadriplegic patient and survivor to national health activist for spinal cord injuries. Despite such radical transformations, he claims to be “still me,” a pun referring both to his paralysis and to the preservation of a consistent inner core of self-identity.7 Stories that reflect transformation of identity make use of key narrative features that may include identification of critical, life-changing incidents; the revelation of character through multiple perspectives; and the integration of personal expertise and adaptation to illness. The intersection of chronology with critical incident is frequently told in a beforeand-after format, in which the narrator’s sense of self alters at a moment of changed health status (Vanderford & Smith, 1996). Inevitably, the narrative turns to challenges brought on by disease or disability, revealing which circumstances, symptoms, and interactions are normal and which abnormal for the narrator. Usually disease and the resulting sickness contribute to changes in bodily appearance and function that may require difficult and radical changes in self-image and ways of living. Comparing his experience of enduring a heart attack with a later bout of prostate cancer, Frank (1991) observed, “During my heart problems I could no longer participate in certain activities; during cancer I felt I had no right to be among others. . . . Heart attacks are invisible on the body’s surface. To myself and to others, I looked no different. One wears cancer. My own visible stigmas were hair loss and my intravenous line” (p. 92). Another kind of challenge revealed through narrative analysis is the way in which illness alters relationships, an inherent dimension of identity. While renegotiation of relationship roles tends to be gradual, the impact can still be quite dramatic. In a study of men’s accounts of prostate cancer, Arrington (2000), focused on “sex talk”—stories men told in support groups about changes in their relationships with their wives that fundamentally challenged their role as sexual beings and intimate partners.8 In one example, a participant described the tension between him and his wife that his illness had caused: “He complained that the messages presented through the media suggested that sex goes on for one’s entire life, and he lamented that such was not always the case. He expressed frustration that women saw those messages and consequently expected a full lifetime of sex.” Based on research interviews with individuals suffering from a variety of chronic diseases, Charmaz (1995) described the process of adaptation to bodily limits and other illness-related losses as gradual accommodation and acceptance, “flow[ing] with the experience” (p. 657), although other possible reactions include ignoring, minimizing, resisting, reconciling, and embracing. Adaptation in this sense involves a close reexamination of one’s goals, expectations, and terms of self-acceptance. Therefore, illness narratives may convey personal identity both through repetitive patterns and changes in actions and 7 For an in-depth analysis of Reeve’s transformative illness narrative see Geist-Martin, Ray, & Sharf (2002), pp. 23–31. 8 Although Arrington does not label his method as “narrative,” characterizing it instead as grounded theory, the cancer patients accounts reveal their construction of themselves and their relationships with their wives by focusing on characters, actions, and motives.

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choices involving struggle, surrender, and accommodation to alterations in one’s capacities. Indeed, the self revealed during a serious illness may prove to be a complex mix of continuity and transformation. Not surprisingly, the storytelling process allows for various facets of one’s identity to be expressed. As Holstein and Gubrium (2000) pointed out, “narrative editing” allows the storyteller to shift perspectives, both as a way of incorporating complex adaptations and as a strategy for taking various listeners into account: “The storyteller, in effect, is an editor who constantly monitors, modifies, and revises themes and storylines . . . to attend to perspective and to the ways they expect their accounts to be heard” (p. 113). In Rose’s case, we can see two versions of identity, one emphasizing the healthy self and the other focused on the disabled self. Both versions are ways of coping with her varied needs and circumstances; her chosen anecdotes reflect a lifetime of having to accommodate to an ongoing health condition. Charmaz (1995) pointed out that some surgical procedures and medical regimens can result in “upward changes” (p. 668), including improvements in appearance, stamina, and possibly prognosis. Even positive changes in health inspire stories in which patients must redefine themselves. Brashers et al.’s (1999) study of HIV patients focused on the accounts of individuals who had experienced restored hope after protease inhibitor drugs had rescued them from a terminal prognosis. “Revival” required each HIV patients to change their identities to “a person living with a chronic illness rather than a person dying from a terminal illness.” Having already accepted their impending deaths, the narrators’ new circumstances included a change of social status and expectations, hence a need to renegotiate roles and identities. Just as they had earlier adjusted to the “sick role,” revival led the patients to resume seeing themselves as “workers” and to place a positive value on independence, self-sufficiency, responsibility and stability. Some of the best-told and most insightful illness narratives not only prove helpful in strengthening the teller’s capacity for dealing with illness-related problems but also awaken listeners or readers to issues that they may not have been aware of or that they are attempting to deal with in their own lives. One influential and long-enduring example is poet Audre Lorde’s journal (1980) following treatment for breast cancer. In one entry, she pondered the silence surrounding the experience of mastectomy that kept women from sharing their wisdom and fears with one another. Significantly, the crucible of a life-threatening illness experience can change people’s identities in ways they never would have imagined. For instance, Sullivan’s (1997) interviews with breast cancer patients helped transform these women into advocates for the health of future generations, turning their disease into a mission. Reflecting their discussions, the researcher described their collective and personal efforts to increase awareness and educate others about breast cancer. These women were concerned about future generations of women, especially their own daughters. They strongly advocated breast self-examination as a vital way to save lives. Other “ways to spread the word” included donating books to resource centers, participating in fundraising activities, and acting as local resource persons. Nora helped conduct a survey to determine possible causes for the high incidence of breast cancer in the area. . . . Two other women began their own health related businesses. (p. 47)

A final interesting aspect of narrative identity construction we wish to underscore is the ability of many narrators to apply essential personal resources and expertise to the illness experience in order to derive perceptive insights. For instance, sociologist Robert Murphy (1987) analyzed how others reacted to his degenerative paralysis as he labored to maintain his social and professional identities, and writer Reynolds Price (1994)

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incorporated original poetry into his account of learning to deal with the intense pain of a spinal cord tumor. Particularly refreshing is comedian Julia Sweeney’s account (1997) of living with her brother Mike, who was being treated for a terminal brain tumor, while she was simultaneously diagnosed with cervical cancer, turning her Hollywood bungalow into the “International House of Cancer.” And here is how she describes an evening in which Mike was extremely ill and nauseated: We got to the emergency room and they could see that Mike was really dehydrated. They wanted to get a saline solution into him right away, but the veins in his arms were all exhausted and so they were trying to get a needle in up over his ear. And he was continuing to throw up and I was standing in the doorway looking in on this. And, to just show you what a wonderfully dark sense of humor Mike had, in even the most horrific of circumstances, he turned to me and said, “I guess it’s not so funny now that you have cancer too, huh?” And I said, “Yeah, Mike. ‘Cause normally I’d be laughing my ass off.” (p. 121)

In the words of Kathy Charmaz (1995), “Adaptation to impairment takes people with serious chronic illness on an odyssey of self” (p. 675). The same is true for people undergoing other forms of suffering, and the process of narrating an illness experience can reveal a person’s essential character through the struggles to adapt, persist, and thrive. NARRATIVE AS WARRANTING DECISIONS

As mentioned previously, Rose does not consider her illness the defining characteristic of her life. This is not to say that having lived with myasthenias gravis hasn’t deeply affected certain life choices. In fact, Rose has decided to continue with graduate education that will lead to a career as a counseling psychologist, working specifically with children with disabilities and their families. In this very important matter, her illness has shaped her future life story in a direction that she feels is positive—both personally rewarding and of social value. “I want to advocate for others so they won’t have to deal with the same problems I’ve had.” Still, she routinely makes choices about health-related disclosures, deciding what is necessary to say to friends, professors, and people she dates and when it is appropriate to raise these issues. One decision that has been especially significant for her is selecting situations in which she will use a wheelchair. Because she often needs to lean on a friend or family member due to sudden feelings of weakness, she has frequently been mistaken for being drunk. Dr. Harvey dissuaded her from using a wheelchair during high school even though school officials had wanted her to do so. Thus far she has chosen to use a motorized cart on three visits to the Disney World theme park, where her close friend works. Although she is used to being attuned to sudden bouts of fatigue and weakness that necessitate rest and changes in medication, she realized on her first visit that she would not be able to cope in her usual ways with the immense distances and dense crowds in the park. The motorized cart enabled her to maneuver and truly enjoy Disney World. During a visit to New York City, however, she elected not to use a wheelchair. She found herself having to stop and rest constantly, reduced to being a burden to the friends she was visiting and treated like a nonperson by people who didn’t know her well. In the end, she concluded she would have been better off in a wheelchair despite the social stigma it bestows. Nonetheless, making use of a wheelchair changes the nature of her hidden disability; her identity suddenly becomes one of a publicly acknowledged disabled person. This is a

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difficult shift, and because she doesn’t define herself as part of the “disabled community,” she says she has the feeling of being an “imposter” when she makes use of a motorized chair. Perhaps this feeling is increased by the reactions and assumptions made by others about people who use wheelchairs (Cahill & Eggleston, 1995). The complexities and contradictions of integrating the use of a wheelchair into her life are still in the process of being developed and understood within her ongoing story of experiencing illness. Narratives reveal the storyteller’s values or reasons for actions, including routine activities as well as those involved in medical decision making (Vanderford & Smith, 1996). Charmaz (1999) calls stories of suffering “moral parables of right and wrong, of moral virtue and moral flow, of reason and rationalization” (p. 367; see also Bochner, 1998). The inherently moral function that she refers to includes making judgments about desirable and undesirable behaviors, describing appropriate and inappropriate relationships and roles, and implying desired transformations. In telling about their experiences of sickness, narrators are able to position themselves so as to portray character and actions taken within the plotline. Narrative chronology may place the locus of one’s decision making on past events, current demands, or future consequences. The retrospective stance of the narrator allows for ethical reflection; “the temporal gap between one’s actions and the telling allows the narrator to assume a distance about his or her actions as narrated in the story, which creates a space for recognizing actions as ‘good’ or ‘bad,’ ‘better’ or ‘worse.’ This space provides the reflective ground for change” (Churchill & Churchill, 1982, p. 74). In this example taken from a discussion within a prostate cancer support group, one participant reveals the motives behind his treatment decision: “That is what my physician told me [that radiation had fewer side effects]. So I opted on the radiation, uh, because, uh, it seemed like that would have less effect upon, uh, the sex life, uh, than an operation, which, uh, I had heard anyway, that the changes that, of losing your ability to have sex was much greater than just by radiation. So I went through the radiation starting in October of 1995.” (Arrington, 2000) Accounts of chronic illness and suffering describe conflicts and explain problems, including the difference between the way things were in the story and the way the storyteller desired them to be. They disclose a storyteller’s attitudes and judgments about events, actions, people, motives, types of relationships, and goals. As a result, stories reveal (implicitly or explicitly) the way the teller thinks the world ought to operate. One HIV patient’s conclusion to a story about his treatment in a V.A. hospital provides a clear example: “I won’t ever come back here. I won’t come back here because I’m not an animal and I don’t behave like an animal. . . . They . . . did nothing to build and boost my esteem and help me deal with the problem of being HIV positive” (Vanderford et al., 1992, p. 134). Just below the surface of complaint, the patient’s emphasis on the values of human dignity and compassion is easy to see. One person’s story frequently has a salutary impact on another’s decision. In a study (Sharf, 1997) of people participating in an online breast cancer listserv, the husband of a woman with early-stage breast cancer asked about the advisability of her becoming pregnant.9 Several women replied with stories revealing their own struggles with this perplexing question, including this response, which detailed the narrator’s attempt to weigh pros and cons (unfortunately, after finally deciding to become pregnant, she miscarried): 9

Clinical studies are not consistent as to whether the increased estrogen levels that accompany pregnancy encourages growth of malignant tumors, and if so, under what conditions. Many women with breast cancer have successfully given birth without tumor recurrence.

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I’m posting to the list in hopes my personal experience is helpful. This is an issue I have been struggling with since I was diagnosed 7 yrs ago. . . . After the miscarriage I worried a lot about whether I’d increased my risk of new breast cancer—those worries have subsided at this point. . . . My best wishes to you and your wife, whatever you decide. (p. 75)

When more than one person is involved in the health care decision-making process, then the issue of co-constructing or overlapping stories frequently comes to the fore. Earlier we referred to the dichotomy that often arises between the voice of medicine and the voice of the lifeworld. Thus, in medical consultations, a negotiated story that interweaves elements of both the patient’s and the practitioner’s distinct narratives is sometimes needed in order to arrive at a care management plan acceptable to both parties (Sharf, 1990). In a different context, sociologist Carolyn Ellis (1995) tells the painful story of her becoming the primary caretaker of Gene, her life partner, who was dying from emphysema. Over several years’ duration, their versions of Gene’s course of illness variously melded and differed as to severity, burdens and responsibilities, and ways of coping. Toward the end of Gene’s life, Carolyn’s story was colored by thoughts of what it would mean to be a survivor, while Gene struggled with impending death. Through very open conversations, both had to come to agreement on whether to use a respirator as a treatment of last resort, since Carolyn would almost surely be the surrogate decision-maker for Gene when the disease prevented him from thinking and speaking coherently. This process of co-constructing a narrative among family members that incorporates a person’s advance directive in the event of life-threatening illness is perhaps one of our most difficult communication challenges. Ultimately, “decisions about health are based on the meaning patients give to symptoms and experiences with disease and their physicians. Narratives function to justify decisions already made and determine future decisions” (Vanderford & Smith, 1996, p. 23, citing Fisher, 1985). Understanding a patient’s story is key to understanding his or her decisions. NARRATIVE FOR BUILDING COMMUNITY

Rose doesn’t particularly identify with the disabilities activists in her community. From her perspective, they seem to make their disabilities the centerpiece of their lives, something she has tried not to do. She’d prefer not to be “lumped into a group.” Her sense of community will be fulfilled from the counseling work with disabled children she has chosen to do. It’s not likely that she will see much public attention given to her particular disability-related problems since myasthenias gravis affects a relatively small number of people, nor are there any mass media images with which she identifies directly. In her youth, the television show that made the biggest impression upon her was Life Goes On, a program that featured a family whose members included a young man with Down’s syndrome played by an actor with Down’s syndrome. Both the fictional character and the real actor proved themselves to be attractive people with capabilities that surprised and pleased the viewing audience. Rose feels that the more the public is exposed to nonstereotypical depictions of illness and disability, the better the chance of acceptance and understanding. So far, we have discussed illness narratives primarily as individual stories of sickness that serve multiple functions for the teller and sometimes have the power to influence others as well. We have also alluded to the co-construction of illness narratives as an important aspect of the interaction between patients and clinicians. Communication theorist Ernest Bormann (1985) conceptualized the interactional ways in which multiple individuals or

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organized groups are attracted to and build upon stories (what he calls fantasy themes), leading to the development of rhetorical visions that provide common histories, coherent depictions of current reality, and desires for the way the world should be. He calls this process—in which stories cohere and build upon each other-symbolic convergence. Applying the theory of symbolic convergence to health-related situations, we assert that narratives serve a communal function in at least three ways: by helping disparate individuals with common maladies provide support to one another, by raising public awareness about specific issues inherent in experiences of illness, and by serving as highly recognizable discourses for advocacy. In this section, we discuss these three aspects of how stories told in group and public formats help to solidify health-based communities. Illness-defined organizations such as face-to-face support groups and online chat groups and listservs share a socially constructed reality shaped by commonly expressed interests, rules of operation, and vocabulary. Communities like these serve the communicative and social functions of enabling members to access a wider range of information than one person is apt to have; giving attention to socioemotional needs and coping skills; and empowering participants to participate in medical decision making, political activist events, and related matters (Sharf, 1997). This occurs largely through discussion generated by the sharing of individuals’ stories of experience. The aforementioned analysis of a support group for individuals diagnosed with epilepsy illustrates how this kind of group discourse changed the way members viewed themselves and their disease. Participants encouraged one another to tell stories in which their disease did not stigmatize them: The narrative mode of communication can provide an opportunity for self-help members to develop a functional language for talking about themselves. . . . Many members described themselves in stigmatizing and helpless words: epileptic, out of control, an embarrassment, depressed, unattractive, and so on. The Chicago self-help group that we observed and taped did not allow members to describe themselves as being epileptic. Victim narratives were also not well received after a while. (Arntson & Droge, 1987, p. 162)

Adelman and Frey’s (1997) ethnographic analysis of Bonaventure House, a residential facility for people with AIDS, is a richly detailed case study of an illness-based community. Because of the particular necessities inherent in this living situation, modes of storytelling evolved that helped to initiate incoming members and to prepare established residents for the deaths of others; create private boundaries and cooperation within a limited physical space; and balance a sense of normalcy with ongoing loss and crisis. Of particular interest are the symbolic strategies used to positively reframe grief and fear with celebration and continuity. These rely heavily on rituals, tokens, and stories of departed residents that help to sustain, both spiritually and materially, those currently coping with the problems of the disease. The sense of community emanating from ongoing support groups and residential organizations is focused on participants who choose to identify with the goals and activities of those groups. Community building may also be assisted through popular dramatizations that serve as outreach to people who might otherwise never perceive themselves as identified with a common set of health concerns. There are any number of excellent examples of media portrayals that raise public consciousness about the difficulties of living with serious and/or chronic disease. Singhal and Roger’s (2000) analyses of “entertainmenteducation” focused on how health prevention topics such as safe sex, family planning, and other lifestyle behaviors are dealt with on soap operas and other types of televised entertainment programs. In fact, entertainment television can be seen as an important element of planned health promotion campaigns. Less scholarly attention has been given to

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television dramas (and occasionally comedies) and films featuring problematic narratives of illness, such as a young mother’s lengthy struggle to remain connected with her husband, children, and friends as she coped with life-threatening ovarian cancer on thirtysomething (Sharf & Freimuth, 1993); actor Tom Hank’s portrayal of a lawyer with AIDS battling job discrimination in Philadelphia; crusty NYPD Blue detective Andy Sipowicz’s fear of submitting to treatment for prostate cancer (Arrington, 2000); and professor Morrie Schwartz’s lessons on coming to grips with terminal illness and the orchestration of a good death.10 Although entertainment-education about health issues is generally treated as the province of the electronic mass media, ethnographer and performance studies scholar Dwight Conquergood (1988) provides an example of using live performance for similar purposes. While serving as a public health officer in a Hmong refugee camp in Thailand, Conquergood organized a theatrical presentation using the refugees’ mythologies and cultural stories, along with newly-developed characters, to convey messages about how to maintain sanitary conditions in the crowded campground, so different from the environment these people had lived in previously. Entertainment-educational efforts include teaching audiences about diagnoses, symptoms, and treatments about which they may not have been aware; considering good and poor role-modeling behaviors in approaching problems related to illness; and initiating talk among family and friends on previously ignored or repressed topics (Sharf, Freimuth, Greenspon, & Plotnick, 1996). In a sense, the engaged audience becomes a community of learners, hopefully better prepared to think about and act upon similar episodes in their own lives. A third way in which narratives help to form the foundation of an illness-related community is in the service of various forms of advocacy, especially to raise funds and change policy (Sharf, 2001). Personal stories of lived experiences of illness told by admired celebrities have helped to rivet public and political attention to an unprecedented degree. Notable examples include actor Christopher Reeve’s speech at the 1996 Democratic presidential convention and his appearances in front of other audiences on behalf of spinal cord injury research and Michael J. Fox’s testimony to Congress in support of funding for Parkinson’s disease research. Equally effective are strategies to bring the narratives of suffering and courage of ordinary people to our attention. One of the best-known and affecting works of this kind is the AIDS quilt, whose immense expanse of personallydedicated patchwork pieces poignantly reminds spectators of the human toll of this health problem.11 The National Breast Cancer Coalition has widely disseminated its “Faces of Breast Cancer” exhibit in a variety of venues, including museums, shopping malls, and scientific conferences. The exhibit comprises photographs of women from each of the 50 states who have died from breast cancer, along with brief narratives describing their contributions to family and community. Participants in the various versions of the Race for the Cure participate and wear T-shirts in memory of loved ones who did not survive their fight with this disease. In each of the examples, the accumulation of personal stories serves a similar purpose—to illustrate the extent and proximity of the problem in a way that generalized statistics cannot.

10 Tuesdays with Morrie eventually appeared as a best-selling book (Albom, 1997), a series of interviews with Ted Koppel on Nightline, and a televised, feature-length movie. 11 The availability of effective new generations of drugs to combat HIV in the United States have quickly changed the social construction of AIDS from a certain killer to a problematic but chronic disease. In the meantime, the devastation of lives from AIDS in the resource-poor African continent continues at an alarming rate, largely out of view from the American public. Perhaps an international version of the quilt needs to be produced and exhibited.

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SOCIAL CONSTRUCTION OF HEALTH SCHOLARSHIP: TO BE CONTINUED

This review of the social construction perspective in health communication scholarship has highlighted the rhetorical origins of the tension between the physical world and symbolic representation, and the application of this approach to communication issues related to health and illness. Although narrative inquiry is only one of many ways of approaching health communication research, its benefits lie in the application of knowledge related to the meanings that individuals like Rose and others that we have quoted, paraphrased, and described here create out of health and illness. The voice of the patient, so often absent in clinical research, is now heard more often because of the emphasis that health communication as a field of inquiry has given to it. The construction of personal stories of suffering is useful to the individual dealing with serious and/or chronic sickness by allowing the individual to make sense of a situation that may at first seem to have no discernible explanation; assert control over what feels like a chaotic set of circumstances; document the transformations in identity spawned by the illness experience; and identify reasons for making decisions related to treatment, adaptation, and coping. The sharing of illness narratives contributes to the formation of community, be it for purposes of public education, social support, or political advocacy. Although we cannot forecast in what directions health communication studies using a social construction approach will develop, clearly this kind of scholarship, once rare, is now accumulating with increasing frequency. We would like to conclude with a few guidelines that we think can help maximize the utility and influence of the social construction approach:

r r r

r

Contextualize discourse. Whether it be historical, social and/or cultural, the context in which the discourse under investigation emerges and is articulated is critical to interpreting its meaning. Social construction emphasizes the connectedness of context and significance. Identify contrasting perspectives. When there is more than one account of reality among key participants in the situation being studied, key points of divergence and commonality should be identified and explored. Incorporate cultural sensitivity. Our understanding of cultural differences as they are manifested in narrative content and styles of storytelling is limited. Awareness of actual distinctions is increasingly important in both clinical and public health contexts as populations continue to diversify and cross-cultural communication becomes at once more prevalent and more problematic. Reveal what is rhetorical. Social construction analysis should be concerned with how language and other forms of symbolization both shape and reflect people’s shared perceptions of reality. In health communication research, the Health promotion messages (along with the public’s response to these) and health policy are particularly important to explore from a rhetorical vantage point.12

12 For example, see Kimberly Kline’s rhetorical analysis (1999) of breast self-examination campaigns, which in part supports the criticism of women’s health activists that these messages detract from perceptions of agency and efficacy in the early detection of breast cancer. Rather than simply dismiss these campaigns, she suggests specific ways in which they can be improved so that women audiences feel empowered and health promotional behavior is encouraged at the same time.

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r

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Be alert to the clinical implications of personal narrative. Social construction analysis should strive to clarify how patient narratives are understood by and responded to by clinicians; how the communication of narratives (by or about patients) affects the quality of clinical care; and how sharing of illness-related narratives impacts patient empowerment, participation, and decision making. Recognize the tension between emancipation and appropriation of voice. It has been argued that scholarship that helps to break the silence about experiences labeled as vulnerable or shameful are acts of social justice, insofar as the telling of stories enables self-knowledge, promotes healing, and encourages societal change (Varallo, Ray, & Ellis, 1998).13 Still, the liberating effects of providing a platform for the public telling of powerful personal stories must be tempered with the realization that the same process of scholarship is necessarily one that edits and punctuates those narratives so that they become supporting evidence for the researcher’s own arguments and point of view. The use of others’ stories in the service of one’s own research leads anthropologist Susan Estroff (1995) to ask, “Whose story is it anyway?”

Finally, we will conclude by underscoring the insight of communication scholar Arthur Bochner (1998), who reminds us that narrative inquiry is at its core a moral activity, one that is purposely and self-consciously entwined with the values of narrator and characters and is always personal, whether it be a matter of telling our own stories or “thinking with” (p. 349), resonating with, another’s story, inevitably from the framework of our own lives. As we “listen” to Rose’s story, her voiced struggle to make moral choices throughout her young life seems palpable. Though the situations impelled by her particular illness may seem rare, her ongoing quest to manage her identity with a sense of empowerment in the face of physical and social adversities is one with which many of us can identify. Even though I need the assistance of others sometimes, I don’t like to be treated as fragile. . . . Control is a big issue for me. I conserve my energies and know my limits. And I like doing things that help others; it helps my sense of self-esteem. . . . My illness has given me good things. It’s made me really self-aware—things I like and don’t like about myself. It helps me to empathize with others. —Rose, at age 22

ACKNOWLEDGMENT

The authors wish to thank “Rose” for agreeing to share her narrative through a series of interviews conducted for purposes of this chapter. REFERENCES Adelman, M. B., & Frey, L. R. (1997). The fragile community: Living together with AIDS. Mahwah, NJ: Lawrence Erlbaum Associates. Ahmed, P. I., Kolker, A., & Coelho, G. V. (1979). Toward a new definition of health: An overview. In P. I. Ahmed & G. V. Coelho (Eds.), Toward a new definition of health: Psychosocial dimensions (pp. 7–22). NY: Plenum. Albom, M. (1997). Tuesdays with Morrie: An old man, a young man, and life’s greatest lesson. New York: Doubleday. 13 The assertion of narrative-based research as social justice stems from the authors’ interviews with incest survivors.

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3 Theorizing About Health Communication Austin S. Babrow and Marifran Mattson Purdue University

PRELIMINARY CONSIDERATIONS

This chapter, like communication on any topic, necessarily reflects a universe of assumptions that must remain, like the physical universe, largely unexplored. Still, it will be useful to examine our main assumptions before pushing too far with our examination of the topic. If nothing else, looking at these will provide a useful general reminder of the limits of any one essay. It will also protect against overly ambitious aspirations or claims and foster subsequent alternative investigations. For these reasons, we will begin with the general considerations that have guided our more specific thinking on theory and theorizing in health communication scholarship. Health communication studies frequently draw on and seek to inform communication scholarship in general. Hence, these studies necessarily reflect currents within the broader field. In the encompassing field, there are reasoned and often passionate calls for both greater unification and greater diversification (e.g., Dervin, Grossberg, O’Keefe, & Wartella, 1989a, 1989b; Levy & Gurevitch, 1993a, 1993b). We believe that the calls for greater unity and diversity represent a basic dialectical tension (Babrow, 1993; Craig, 1999). There are other such tensions in this debate. Hence, we will adopt a dialectical stance at many points in this chapter. In short, we believe there is meaning and value in both the unification and the diversification of communication scholarship. Moreover, we believe that creative efforts to engage with these seemingly antithetical (cl)aims can add significantly to communication research in general and health communication scholarship in particular. Hence, we will try to represent the impulse toward unifying perspectives and also the argument for differentiation and diversification.

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The chapter begins with a discussion of the nature of health communication theory. Among other things, it provides a definition of theory and explores the relationship between theory and practice. The essay next considers the nature of health communication by elucidating what we believe to be four of its distinguishing features. The chapter then reviews various schemes for differentiating types of health communication theory. Finally, we use one such scheme, Craig’s (1999) communication-centered framework, to sketch (a) selected connections between theoretical traditions and the distinguishing features of health communication and (b) practical implications of each form of theorizing. THE NATURE OF HEALTH COMMUNICATION THEORY Defining Theory

Not only is there no broadly acceptable definition of theory, it is tempting to conclude that it would be both impossible and undesirable to construct such a definition. Still, in composing a chapter about theory and theorizing, we are necessarily guided by some more or less comprehensible general conception of our subject. We would rather make our working conception explicit than compose it as an acrostic. According to our conception, a theory is a consciously elaborated, justified, and uncertain understanding. This definition is intentionally much broader than some appear to desire (e.g., Berger, 1991; cf. Craig, 1993; Proctor, 1992; Purcell, 1992), but we believe it is not so broad as to be meaningless. It emphasizes several issues that we think are crucial to understanding the nature of theory. A theory is, at base, an understanding. It can be an understanding of what the theorist believes to be a concrete object that exists independently of human conception. Alternatively, the “object” of a theory may be thought of as a product of human conception, or it may be some hybrid or variant of these extremes. However, theoretical understandings differ from what are probably our most common understandings—the tacit formulations that guide us unawares and are frequently difficult if not impossible to access consciously. For example, any competent speaker can generate an infinite number of grammatically correct sentences, perform countless speech acts, manage turn-taking and topic selection within conversation, and understand profoundly ambiguous utterances with relative ease and without conscious awareness or understanding of the underlying structures, processes, and dynamics that make these remarkable achievements possible. By contrast, theories of generative grammar, speech acts, turn-taking, topic selection, and interpretation are consciously constructed understandings. Conscious understandings can be as simple as a single proposition (e.g., the media promote unhealthy body images; nurses are more in touch with the whole patient than are doctors), but a theory is an elaborated understanding involving a number of concepts and suppositions about their interrelationships (cf. Anderson, 1996; Littlejohn, 2002; Reynolds, 1971).1 In addition, the consciously elaborated understandings that merit being 1 Some scholars, particularly some social scientists, attempt to differentiate “a sense of understanding” from “explanation” (Singleton & Straits, 1999). For instance, explanation is thought to take the form of a simple deductive argument connecting some antecedent to some consequent (or a chain of antecedents and consequents), whereas a sense of understanding involves something deeper, usually the description of an underlying causal process (see Reynolds, 1971). The distinction is troublesome for various reasons. For instance, it sets up a potentially infinite and futile regress; one can push the inquiry ever further, requiring ever more basic causal processes to explain the ostensible connections at higher levels of explanation or understanding. At some

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called theories are justified but uncertain. What we mean by this is that a theory emerges from processes and practices of sense-making; these may be empirical, interpretive, critical, or otherwise (see Bochner, 1985; Miller, 2002; see section below). In any case, theoretical sense-making processes and practices not only construct understandings but justify belief in or perception of the reasonableness of the emerging, elaborated constructions. Depending on the nature of the theory (i.e., its metatheoretical commitments; see section below), there may be some effort to distinguish between its substance and its justification. For instance, some empiricists claim to maintain a strict separation between theory and data. Alternatively, one may see theoretical constructions and their justifications as inextricably intertwined, as in interpretive theory (see Anderson, 1996). We believe it is essential to emphasize that a theory is a justified understanding; even (and perhaps especially) empiricists who aim for a strict separation of theory and justification are utterly disinterested in (empirically) unjustified understandings. For these reasons, some have argued that theorizing is a rhetorical (argumentative, persuasive) enterprise. In other words, theorizing is seen by some as an inherently communicative process by which we attempt to formulate a consciously elaborated and justified understanding of the world (Anderson, 1996; Craig, 1999; K. Miller, personal communication, April 26, 2001). Finally, a theory is a fundamentally uncertain understanding. The uncertainty may be thought to reflect the nature of the world we are attempting to theorize about, which we might call ontological uncertainty, or it may be rooted in the nature of how we come to know, which we might call epistemological uncertainty (Babrow, 2001). In any case, for people interested in consciously elaborated understanding of the world, uncertainty necessitates justification (for brief sketches of contrasting views, see Babrow, 2001; Bradac, 2001). This in turn makes theory integral to a wide range of intellectual enterprises. Theory and Practice

It is tempting to assert that health communication scholarship is first and foremost about concrete practices in the world, but what does this mean? For some, it means that health communication scholarship must emphasize doing over theorizing (Clift, 1997; Nzyuko, 1996; Witte, 1996). The handiest counter to this view is Kurt Lewin’s contention that there is nothing so practical as a good theory. But a less radical stance, one that is not squarely contradicted by Lewin’s dictum, is that health communication theory is meaningless if it does not influence practices related to health and illness (also see Craig, 1989, 1999). Several points seem highly relevant to this stance. One is that claims about the influence of theory on health practices are limited in the sense that, although we can make judgments about the past or present practical value of any particular theory (i.e., its influence on practice), these practices and judgments do not necessarily anticipate the theory’s value in the future. Slavish devotion to past or present utility is an inherently conservative posture. A second important issue is that the foregoing consideration must not be taken as licence to pursue a theory without thought about its potential future impact on practice. Our inability to anticipate future uses of a theory does not mean that “anything goes.” On the contrary, there is no reason to think that a theory is used only for good or it is disused. Theoretical applications also can be harmful. For instance, unreflective applications of various point one might question whether one is moving away from rather than closer to a sense of understanding, particularly when processes at multiple levels interpenetrate in complex ways (see Babrow, 1993, 1998). Moreover, much communication scholarship is directed at events in which causal analysis is problematic— events characterized as indeterminate, undetermined, or underdetermined (Anderson, 1996).

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forms of uncertainty reduction theories can endanger health. More specifically, many efforts to promote health screening are based on theories that take uncertainty reduction as the main reason for health screening and as the main avenue for promoting such screening. That is, they assume that the main motive leading to and outcome of participation in health screening is the reduction of uncertainty about one’s health status. Promotional efforts based on this assumption may obscure more complex motives and trample on the concerns of those engaging in these procedures. For instance, Babrow and Kline (2000) argued that single-minded applications of uncertainty reduction theories to promote breast self-exam probably disempower women in various ways and thereby threaten their health. In short, theoretical applications can turn out badly. That we cannot anticipate the future with certainty does not absolve us from the responsibility for careful, critical, searching reflection on potentialities as well as critique of current and past practices. A third issue is that, whatever claims we might make about the usefulness of a health communication theory, they depend on some set of values. Anderson (1996, chap. 8) described several different conceptions of the appropriate values or aims of theory. These include the objectivist position that the only value in science is context-free truth; various cultural and critical theories that advocate self-consciously political or economic values; and hermeneutics, which opens up a world of infinite possibilities for context-appropriate values. Hence, judgments of value, practical or otherwise, must be made with great care and an awareness of their inescapable parochialism. As for the relationship between theory and practice, Thayer (1982) asserts that, in its earliest usages, the term theory applied to the description of actual practices: The original Greek notion of theory was straightforward enough: If you wanted to write down a theory of something, you would locate a person who could do that something better than anyone else, and write down how that person did it. But the later Greeks, out of their concern to distinguish the educated from the working classes, separated the head from the hand. We’ve been stuck with the consequences ever since. (p. 21)

Thus, the dualism of “theory” versus “practice.” With Thayer and others (e.g., Craig, 1989, 1999), we believe that this dualism need not hobble us. Communication theory should be about the practical problems of being human: The human relevance of a theory of communication lies in what understandings it may help us to gain of the inextricable relationship between communication and human nature, of the consequences of how we communicate for the human condition. Anything less is not a theory of human communication, but merely reflects a “theory” of how to get on in the academic establishment. (Thayer, 1982, p. 27)

Ultimately, in keeping with our understanding of the preceding, we believe that concerns about the contributions of health communication theory to practice have little to do with the nature of theory and more to do with the activities of theorists who fail to complete the circle in which theory and practice interpenetrate. One final issue worth considering at this juncture is directly related to the necessity of closing the circle of theory and practice. We wish to note Bateson’s (1972) dictum that the map is not the territory. No theory will ever be anything but an incomplete map, one of perhaps an infinite number of renderings of its domain. Whether we are materialists or idealists (see Anderson, 1996, chap. 2), we must beware the inclination to mistake our

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representations for whatever it is that we wish to represent; we must be open to the world beyond our current conceptions. With this caution in mind, we turn to our map of health communication theory. CHARACTERIZING HEALTH COMMUNICATION THEORY Points of Contention

Given our definition of theory, what is health communication theory? This question gives rise to knotty issues, most notably the difficulty of defining both health and communication (Kreps & Thornton, 1992; Pettegrew & Logan, 1987; Ratzan, Payne, & Bishop, 1996; also see definitions by Clift & Freimuth, 1995; Rogers, 1996; Sharf, 1993). We take a different approach to this issue. As noted earlier, since health communication scholarship is informed by and seeks to inform the broader field of communication, the former necessarily reflects currents within the latter. Hence, it is no surprise that the same criticisms that have preoccupied the broader field—its disciplinary status, its legitimacy, its distinctiveness, and so on—also appear in discussions of health communication scholarship (Berger, 1991; Burgoon, 1995; Cassata, 1980; cf. Nussbaum, 1989; Smith, 1989). Because these topics have been aired elsewhere, we will not revisit all of them here. Rather, we will note perhaps the most significant criticism: the contention that much of what passes as health communication theory could be subsumed within interpersonal and mass communication scholarship (Berger, 1991). Whereas other chapters in this handbook belie Berger’s judgment of the past accomplishments of health communication scholarship, we wish to offer a different sort of response and from it derive a view of the nature of health communication theory. As Craig (1989, 1999) has argued, communication scholars have long struggled with the tension between theory and practice, with the latter having been perhaps the driving wheel. We contend that health and illness make up the most elemental realm in which to study the nature and importance of communication: Communication in health and illness constitutes the most vital of human experiences. No other human phenomenon is more elemental than health and illness, none connects us more viscerally with our aspirations, or confronts us more palpably with our limitations. Moreover, given the dynamics of these elemental experiences, and especially given that they are constituted in the communicative interweaving of body, mind, and society, health communication represents among the most complex, challenging, and potentially rewarding areas for scholarly inquiry. (Brashers & Babrow, 1996, p. 243)

If anything is surprising, it is that it has taken so long for health communication to emerge as a central concern of the field. It is also surprising that the emergence of health communication scholarship has encountered any resistance at all. This resistance is best understood as an example of the gratuitous criticism that follows many emerging specialty and hybrid fields of study. Unifying Themes and Tensions

The important question to ask is not whether health communication constitutes a distinctive content domain or context for theory development. Rather, we must ask, What about health communication is distinctive? Clearly there are commonalities in basic communication

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processes across domains. For example, regardless of context, nonverbal displays of emotion and the constitutive rules of speech acts will be much the same. As another illustration, whether the content involves politics, health, or other matters of social concern, the media will set the public agenda; the media shape our sense of what is important to think about and legitimize some ways of thinking while delegitimizing others by selective attention and ways of framing issues. But distinctive features of communication about health and illness warrant focused attention for the same reasons that specializations emerge in fields such as biology, chemistry, history, or literature and that hybrid fields such as biochemistry, cognitive science, and cultural studies are developed. Each specialty or hybrid field is uniquely positioned to illuminate its subject matter. Each offers unprecedented opportunities for cross-fertilization with other specialty or hybrid fields as well as with the source disciplines. In short, focused study of health communication will more efficiently and effectively reveal its distinctive character than will general studies of interpersonal or mass communication. What then are the distinguishing features of health communication? We believe that four characteristic tensions mark health communication as an especially significant form. Interplay of the Body and Communication. Health communication is significant for the pronounced and profound tensions and interplay between the realms of communication and the body. Zook’s (1994) discussion of the biopsychosocial turn notes two aspects of this interplay: “the material existence of biochemical pathways between mind and body, and the effect of psychological, social, and cultural variables on personal health behaviors” (p. 354). As a powerful example of the former, Melzack’s (1999; Loeser & Melzack, 1999) neuromatrix theory of pain suggests that communication processes and practices, along with a variety of other inputs, shape the neural network that produces sensations of pain. But the distinction between the “direct pathways” and the presumably indirect influences of communicative practices on the body and health behavior are difficult to sustain upon reflection (also see Zook, 1994). Physical dis-ease shapes communication, from a pointed cry of pain to grumbling complaints and from information and diagnosis seeking to support seeking. In turn, these communication acts and processes influence bodily states (e.g., relief, generalized or specific distress; see Lazarus, 1991, chap. 10), which in turn influence communication, and so on. Moreover, these specific and local experiences of the interplay of communication and the body are shaped by powerful social and cultural forces influencing individuals’ behavior (Blum, 1981). Communities form individuals’ behavior symbolically and tangibly (Allen & Allen, 1987). As agents of the dominant culture, communities transmit values and norms that symbolically circumscribe some behavioral choices and encourage others. As systems of exchange and influence relationships, communities establish opportunities for people to behave in some ways, but not in others. (Finnegan & Viswanath, 1990, p. 20)

Hence, the communicative interweaving of bodily sensation, cognitive-emotional sensemaking, and various layers of social structures and practices fabricate the social meaning of physical states and the physical meaning of social states. The interplay of body and communication is powerfully illustrated in the processes by which physical sensations and diseases are conceptualized and labeled. For example, cultural variations in the language we use to talk about our bodily states are revealing

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(Zborowski, 1969). Culture shapes how we label our physical states, and clearly we react to and treat ailments differently depending on how they are labeled. Hence the dilemma noted in Cassell’s (1985) landmark work on physician-patient talk: “How do doctors ever make a diagnosis? How can we distinguish between a ‘terrible’ (Jewish) pain and an ‘annoying’ (Irish) pain?” (pp. 53–54). Obviously, then, the interplay of language and bodily sensations shapes the experience of illness; these interactions are themselves shaped by historically bound sociocultural constraints. Studies of metaphor also reveal the interplay of body and communication. For instance, consider analyses of metaphor in domains such as cancer (Sontag, 1978), AIDS (Sontag, 1989), the immune system (Martin, 1994), and death and dying (Ross & Pollio, 1991). Such work reveals that figurative conceptualizations of the body and bodily processes such as disease and dying shape understanding, attitudes (e.g., stigmatization), and social action. In a curious turn, Sontag’s (1978, p. 3) analysis of the role of metaphorical conceptualizations of illness led her to “call for a kind of linguistic cleansing of medical and lay attitudes toward disease such that the true biological core of disease can be apprehended and distinguished from its metaphorical extensions” (Aronowitz, 1998, p. 13). Sontag’s desired goal is curious because medical historians have demonstrated repeatedly the difficulty of apprehending “the biological core of disease unadulterated by attitudes, beliefs, and social conditions” (Aronowitz, 1998, p. 13). Indeed, our labels and conceptualizations of disease are continually reconfigured by developments in social attitudes (e.g., homosexuality and a host of women’s conditions), diagnostic tests, and treatments. For instance, Aronowitz (1998) discusses the increasing number of new diseases rendered discoverable by our advanced technological capacity. For example, we can now observe individual differences in serum cholesterol levels and continuous electrocardiographic monitoring that can lead to diagnoses such as hypercholesterolemia and silent cardiac ischemia, “diseases” that have no corresponding phenomenological basis until a patient is found or “constructed” by screening tests. Similarly, the expanding knowledge of the human genome will undoubtedly lead to the “construction” of new diseases based on correlations between individual genetic variation and clinical states. What configuration of nonbiological factors explains the appearance of such diseases at a particular moment in time? In whose interest is it to view diseases as legitimate? What is the effect of a new label on the patient and the doctor-patient encounter? These questions remain at the center of medical practice. (pp. 37–38)

Clearly, these questions should be at the center of communication theory and research (also see Brashers, 2001). They apply not only to the communicative processes that articulate the meaning of new tests but also to those that shape the meaning of new treatments. For example, new drugs affect not only bodily states but also disease categories and therefore our understanding of emotional and physical health. Frequently, and not surprisingly, these changes are the focus of substantial debates, which in turn shape disease categories, uses of these new drugs, and the bodies made possible by the social, cultural, and historical moment. These phenomena are powerfully illustrated in the ways that psychoactive drugs have reconfigured conceptions of mental illnesses and treatment and in debates about these drugs, their uses, and their effects on conceptions of illness and health care (e.g., Breggin, 1991; Breggin & Breggin, 1994; Kramer, 1993; Luhrmann, 2000; Valenstein, 1998).

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Hence, in many ways, health communication is significant for the pronounced and profound interplay of the body and communication. Theories of health communication ought to at least recognize this interplay. Those that emphasize it have the potential to illuminate one of the key distinguishing characteristics of health communication. Science and Humanism. A second distinctive characteristic of health communication is the pronounced tension between scientific and humanistic assumptions, values, aspirations, and limitations. What we have in mind here are the sometimes discordant interests people have in the power and potentialities of science and the desire to recognize and actualize our humanity. This tension has many manifestations. It is evident in debates about biomedical versus biopsychosocial models, disease versus illness, technique versus meaning, and “alternative” versus “traditional” therapies as well as in disputes within medical ethics. For instance, not only do biopsychosocial models (Engel, 1977) recognize the interplay between the body and communication, debate between their advocates and the adherents of biomedical models exemplifies tensions between the traditional scientific imperatives of materialism and reductionism and efforts to understand the significance of mental or ideational human realities (see Anderson, 1996, chap. 2). In saying this, we do not mean to equate humanistic and biopsychosocial models, for the latter can be thought of as scientific. Rather, we mean to say that this approach, more so than traditional biomedical health care, attempts to recognize the human meanings of disease. A poignant illustration of the contrast and tensions between scientific and humanistic orientations is found in contemporary attitudes and practices related to death and dying (see Ari`es, 1981). In the United States, changes in nutrition, sanitation, engineering safety, and medical technology have caused a shift in the nature of our dying. Death, rather than occurring shortly after the onset of an acute illness or injury, now typically is the endpoint of one or more lengthy chronic illnesses (Callahan, 1993; Fox, 1980; Jones, 1982; Stroebe & Stroebe, 1995). Ethicist Daniel Callahan (1993) has argued that these changes have created a practical paradox in health care: as medical science and technology have gained control over a widening array of assaults on our lives, the process of dying has become more agonizing. Contemporary medicine has replaced the certainty of death from a given illness at a given hour with the uncertainty of a vanishing line between life and death. Yet despite the uncertainty, encouraged by scientific discoveries and technological innovation, we have become a death avoidant culture (Nuland, 1993). Some argue that death has replaced sex as a core cultural taboo (Gorer, 1965; Kearl, 1996). Callahan contends that we have lost the willingness and perhaps the capacity to talk openly about death except in the bloodless technical terms of medicine and the law. In short, Callahan argues, we have been attempting to control death through monomaniacal scientific and technological efforts. As a result, death has lost much of its meaning. We have become insensitive to the most profound challenges posed by critical illness and death—the ancient and unanswered questions that dying raises about human existence. Most notably, in the blinkered pursuit of control, we have obscured a fundamental, age-old question that embodies our deep ambivalence about death: whether it should be fought or accepted (Callahan, 1993, p. 89; see Hines, Babrow, Badzek, & Moss, 1997, 2001; Hines, Moss, & McKenzie, 1997). Since we cannot and should not go back to a time when we were powerless to deal with mortal illness and death, Callahan argues, we must find ways to deal more forthrightly with this ancient question. We must, in short, face and refashion our understandings of nature and death and ultimately of what it means to live

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a human life. Science cannot do this, but neither can we undertake the necessary private and public discussion without recognizing the powerful imperatives of science. Hence, as revealed in this most basic example, a profoundly significant characteristic of health communication is the pronounced tension between scientific and humanistic assumptions, values, aspirations, and limitations. Idiosyncracy and Commonality. A third characteristic of health communication is the tension between idiosyncracy and commonality. Of course, this tension reflects the challenge of intersubjectivity or identification in all communication. That is, if meaning is inescapably experiential, and if no two people share a common history, then shared meaning is a problematic notion. However, what we want to say about health communication is that it is distinct because of the ways that it magnifies the tension between our uniqueness and commonality. One of the ways that this occurs is in debates between advocates of two major models of disease and illness. Historians of medicine have labeled as “ontological” the view that diseases are specific entities that unfold in characteristic ways in the typical person. In this framework, diseases exist in some Platonic sense outside their manifestations in a particular individual. The other compelling account of illness, the “physiological” or “holistic,” stresses the individual and his or her adaptation, both psychological and physical, to a changing environment. In this framework, illness exists only in individuals. These ideal-typical notions have been in a state of dynamic tension since antiquity. (Aronowitz, 1998, p. 8)

Ontologically inclined thinkers “question whether one has to treat the ‘whole person’ if one can rid him or her speedily and painlessly of disease and hence prevent the necessity of a long-term ‘association’ with the medical professional” (Jenkins, 1998, p. 354). Reflecting this inclination in the health communication literature, Burgoon (1995) would like to see such practices enforced with boot leather applied to the rear of recalcitrant patients. But those more inclined toward the holistic orientation respond by arguing that disease/illness is frequently not that simple to treat and that the force of medical authority is often countered by reactance (Fogarty, 1997; also see below). The debate between ontological and holistic models of disease and illness reflects the basic tension between idiosyncracy and commonality in health communication. This tension constitutes a faultline in scholarly conceptions of health care and promotion, in the interactions between patients and health care providers, and in the conceptions of risk held by health communicators and their audiences. For example, the tension is reflected in the ever-present possibility of debates over relative expertise, what counts as legitimate evidence, the meanings of (relative) risk, decision making, and so on. In addition to the various models of disease and illness, the tension between idiosyncracy and commonality is also manifested in the distinction between affirming the personal meanings of an illness (and by extension our life and being) and affirming our common humanity. For instance, illness is at once a private and public matter. We strip illness of its public significance when we promote patients’ individual autonomy as if it were the only important human value (Babrow, Hines, et al., 1998; Callahan, 1993; Smith, 1996). Indeed, we strip ourselves of our humanity when we promote autonomy as our cardinal value. “Human beings will and must be a burden on one another; the flight from dependency is a flight from humanity” (Callahan, 1993, p. 127). Of course, we also stand to lose when we

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deny the individual significance of illness. Although we all become sick and eventually die, each pain—particularly in the way it is borne—marks out our individuality, and each passing is the loss of a light that will never shine again. So, in these and many other ways, health communication is characterized by the tensions between idiosyncracy and commonality. (Un)Certainties and Values, Expectations and Desires. Uncertainty is central to the experience of illness (Atkinson, 1995; Babrow, Hines, & Kasch, 2000; Babrow, Kasch, & Ford, 1998; Brashers & Babrow, 1996; Katz, 1984). The significance of uncertainty is suggested by the observation that expectations pervade illness experiences. Expectations play a role in the production of somatic disorders, in the processes by which disorders are labeled as worthy of medical care and illness labels are applied, and in recovery and prevention (Jones, 1982). Moreover, the significance of uncertainty is demonstrated in research explicitly concerned with uncertainty and illness (e.g., Cohen, 1993; Mishel, 1988, 1990) as well as in studies of stress and coping (e.g., Lazarus, 1983; Lazarus & Folkman, 1984; Rothbaum, Weisz, & Snyder, 1982; Taylor, 1983), and human helplessness and perceived control (e.g., Abramson, Garber, & Seligman, 1980; Abramson, Seligman, & Teasdale, 1978; Bandura, 1982; Brenders, 1987, 1989). (Babrow, Kasch, et al., 1998, p. 2)

Given its pervasiveness, it is not surprising that uncertainty is the locus for much of the tension between the realms of communication and the body, scientific and humanistic assumptions and aspirations, and idiosyncracy and commonality. Indeed, some perspectives take uncertainty as their focal point and, based largely on mechanistic or biomedical frameworks, emphasize accurate communication of knowledge and uncertainty (e.g., models of judgment under uncertainty, rational choice and decision analysis, and theories of risk; but see efforts to overcome some of these limits in Friedman, Dunwoody, & Rogers, 1999) or uncertainty reduction (Albrecht & Adelman, 1987; Sheer & Cline, 1995). Others take uncertainty as a starting point for more open-ended analysis. In particular, a number of writers have begun to develop theories of the relationship between communication and uncertainty management (Brashers, 2001; Brashers et al., 2000; Mishel, 1988, 1990; Parrott, Stuart, & Cairns, 2000). And, in a related vein, still others, including some interested in management or coping, see uncertainty as only half of the heart of illness (Babrow, Kasch, et al., 1998; Babrow et al., 2000; Brashers & Babrow, 1996; Ford, Babrow, & Stohl, 1996; Hines, 2001; Hines, Babrow, et al., 1997, 2001). For instance, problematic integration theory suggests that uncertainties take on meaning only relative to the values at stake in health and illness. Moreover, Babrow (2001, in press) has recently argued that this theory counters a wide variety of common misconceptions about uncertainty: That it has a single or narrowly homogeneous meaning, such as that it is necessarily bad (Brashers, 2001; Ford et al., 1996; Mishel, 1988, 1990) or the result of insufficient information (Babrow, Kasch, et al., 1998; Babrow et al., 2000). That the main response to uncertainty is information seeking, the aim and significant outcome of any encounter with uncertainty is its reduction (or frustration of this aim), and its reduction is always possible.

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That uncertainty and its attendant problems are resolved exclusively by managing the level of uncertainty (as opposed to engaging in a reappraisal of values or more holistic transformations). That any one resolution of an unpleasant uncertainty is the final punctuation of experience—or, for that matter, that any dilemma involving expectation and desire has a clear first cause. That the course of such a dilemma is predictable in a specific and robust sense.

In summary, much recent theorizing about health communication has emphasized that uncertainty pervades illness experiences and communication about health and illness. A subset of that work (for a review, see Babrow, 2001) further suggests that the meaning of uncertainty in general—that is, in any of its particular forms—is profoundly dependent on the values at stake. Moreover, this theorizing recognizes that our evaluation of whatever is at stake depends on how we formulate and manage uncertainty. This occurs, for example, as we cope with chronic illness, with irreversible losses from aging and illness, and with approaching death. Our sense of possibilities, our construction of the unknown, of the knowable, and of the nature of what it means to know conditions what we value and the extent to which we value it (Babrow, 2001); so too what we value shapes what we take to be possible, both by compelling us to cling to possibility (the essence of hope; see Babrow, 1992, 1995; Beach, in press) and by forcing us to act in ways that are intended to affect objective chances. As mundane examples, think of the motives related to diet, exercise, political organizing, and changing health care providers and care plans. For a heroic example, consider the pursuit of a cure for a child’s illness depicted in the 1992 movie Lorenzo’s Oil. In health communication, therefore, values force the rearticulation of (un)certainty and (un)certainty compels the rearticulation of values (Babrow, 1992, 2001, in press; Babrow et al., 2000; Babrow & Kline, 2000). Summary and Implications of Our Map

As the many chapters in this handbook attest, health communication researchers are engaged in a vast, varied, and dynamic enterprise. It is unlikely that many theories will embody all of the characteristic tensions we have identified. However, to the extent that a theory recognizes and attempts to grapple with these characteristics, it will do justice to what is distinctive and significant about health communication. Moreover, to the extent that other areas of communication theory and research are also interested in these tensions, health communication theories that grapple with these characteristics will contribute substantially to the entire field. The very nature of the characteristic tensions we have described suggests that health communication theories ought to be developed with a dialectical sensibility. In other words, we believe that the most productive way to theorize about health communication is to illuminate and struggle with the theses and antitheses embodied in the tensions sketched above. We also are convinced that communication constitutes these tensions and the varied responses to them in health and illness experiences (for a view of various responses to dialectical tensions, although in the realm of interpersonal relationships, see Baxter & Montgomery, 1996). Finally, it should be said that we do not believe our analysis of significant distinguishing features captures all of the important and distinctive issues in health communication. We offer our analysis not only in the hope that it will provoke theories that contend with

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the tensions we have identified but also with the wish that it will stimulate more refined, searching, and illuminating metatheories. ORGANIZING HEALTH COMMUNICATION THEORIES

There are a host of ways to formulate an organized understanding of health communication theories—essentially, to formulate alternative maps of the domain of theories (as opposed to the domain of health communication experiences). For instance, we might construct a topical scheme based on the four distinctive tensions in health communication (sketched above). The trouble with this sort of scheme is that the theories we would most like to highlight—those of the sort we would like to encourage—would be unclassifiable in the sense that they would engage with all of these tensions. Other alternatives would be to classify theories by context or level of analysis, which is largely the approach taken in this handbook, or to order them by their historical evolution. Another important approach is to organize theories by their metatheoretical commitments. The appeal of this alternative is that it illuminates various underlying, often tacit philosophical commitments. There are, however, numerous ways to approach metatheoretical issues. One powerful approach, recently undertaken by Anderson (1996), is to classify theories according to their (often implicit) answers to questions about ontology, epistemology, praxeology, and axiology. To paraprhase Anderson, the ontology of a theory makes a claim about what is, and more specifically it answers the questions: “What is the nature of the phenomenal world? What is our manner of engagement with that world? What is the nature of the individual within that world?” A theory’s underlying epistemological commitments reflect a view of what we can know; it answers the questions: “What is the character of the justified argument? What is the relationship between theory and method?” Praxeology entails claims about how theorizing is done; in other words, it answers the question, “What is the practice of the practical argument?” Finally, axiology refers to one’s view of the value of theory. The corresponding question is, “What is the presence of theory in society?” (pp. 2–3) For each of these questions, there are several possible answers, and although some combinations of answers are unlikely, theorists have formulated many different combinations. As a result, there are many different ways of distinguishing theoretical genres. One of the more common ways of comprehending these varieties is exemplified by Bochner (1985, 1994), who argues that a pragmatist stance is central to all discussions of communication inquiry. “The pragmatist point is that the terms that will prove most useful depend upon the purposes to which inquiry is directed. Because there are a number of legitimate goals that [scholars] may seek to achieve, there are a number of different vocabularies that may be applied to these goals” (Bochner, 1985, p. 36). For these reasons, Bochner (1985) compares and contrasts three metatheoretical perspectives—empiricism, hermeneutics, and critical theory—in terms of their goals, views of phenomena, theoretical functions, production of knowledge, and judgment of truth claims (also see Miller, 2002). In a later paper, Bochner (1994) includes narrative theory as another alternative vocabulary for theorizing about communication. “By admitting that there are at least three legitimate goals to which our . . . work can be addressed, we are liberated from the obligation to find a universally accepted standard for judging which point of view about . . . inquiry is ultimately correct” (Bochner, 1985, p. 52). The pragmatic thread has recently been used to weave an even broader tapestry of scholarly goals in Craig’s (1999) synthesis of seven historical traditions within the field of communication. Craig developed his conception of the field of communication using

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three lines of argument. The first line advocates a constitutive metamodel of communication; such a metamodel pictures different theories as varied “ways of constituting the communication process symbolically for particular purposes” (p. 127). The second line of argument is that communication theory ought to be seen as metadiscourse, or communication about communication. In other words, “the technical practice of communication theory largely derives from our ordinary, everyday practices of talking about communication” (p. 129). Craig’s third line of argument is that communication is best conceived as a practical discipline. He envisions “communication theory as an open field of discourse engaged with the problems of communication as a social practice, a theoretical metadiscourse that emerges from, extends, and informs practical metadiscourse” (p. 129). Seen from this perspective, health communication theory is understood to emerge from practical efforts such as those designed to foster patient autonomy. For example, the doctrine of informed consent (Beauchamp & Childress, 1994) and the Patient Self-Determination Act (Doukas & Reichel, 1993) give rise to theory building, which in turn is intended to inform and refine these practices (e.g., Hines, 2001; Hines, Babrow, et al., 1997, 2001; Katz, 1984). Based on these three foundational arguments, Craig lays out seven traditions within communication theory: rhetorical, semiotic, phenomenological, cybernetic, sociopsychologic, sociocultural, and critical. Among the many virtues of this formulation is that, unlike in a number of previous attempts to differentiate types, communication theories in this scheme have “something to agree and disagree about—and that ‘something’ is communication, not epistemology” (p. 135). In other words, Craig views these seven traditions as different ways of conceptualizing and problematizing communication. In addition, Craig’s framework is laudable for its attempt to promote metadiscourse. He does this doubly well in the sense that (a) he identifies ways that each tradition can be used to engage with everyday practice (i.e., ways that each tradition both supports and challenges commonplace understandings) and (b) he describes topoi for argumentation across traditions (summarized in his Table 2).2 Our aim here is not to reproduce Craig’s analysis by applying it in full to health communication theory. Rather, we want to foster disciplinary development—dialogue and theory building—and practical engagement along the lines he suggests. Although we cannot discuss all possibilities, we can at least illustrate the sort of theoretical and practical matters suggested by our view of health communication and the perspective on theory represented in Craig’s work. Therefore, following are thumbnail sketches of the seven approaches to theorizing and brief examples of points of contact between each tradition and the tensions in health communication identified above. We also describe one or two pragmatic implications of each theoretical perspective. The Rhetorical Tradition

According to Craig (1999), the rhetorical tradition theorizes communication as a practical art of persuasive discourse (traditionally, artful public discourse, although these boundaries have eroded over the centuries; see Bizzell & Herzberg, 1990). Rhetorical theory has 2 A reader of an early draft of this chapter pointed out that Craig’s framework, by dividing the field into seven camps, may discourage rather than encourage metadiscourse. Any such scheme runs this risk by creating categories. However, we believe that Craig’s analysis of topoi for argumentation across traditions serves as a powerful impetus for dialogue and mutual exploration. Unfortunately, due to space constraints, this chapter can only point interested theorists toward Craig’s potentially healing topoi.

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enormous implications across the spectrum of public deliberation over health care policies of every sort. And as traditional boundaries have been challenged, scholars have developed analyses of ever wider forms and contexts of suasive texts and discourse in the rhetorical tradition (e.g., Condit, 1990; Sharf, 1990; Solomon, 1985). We believe that rhetorical theory is particularly well suited to studying characteristic tensions in health communication. Notably, from nearly its inception, the rhetorical tradition has grappled with the role of discourse in arriving at probabilistic judgments and also with the tensions between reason and emotion (Bitzer, 1981; Craig, 1999; Howell, 1956). Hence, it is well suited to studies of the communicative framing of uncertainty and values and the tension between expectation and desire. Moreover, rhetorical theory has important implications for understanding the mutual interdependence of the symbolic and physical realms (Chesebro, 1982) and tensions between scientific and humanistic orientations (Harter, Stephens, & Japp, 2000; Sharf, 1990; Solomon, 1985). Rhetoric is also fundamentally about creating a sense of identification—shared or common meaning and the constitution of community—out of the multiplicity of voices, selves, and experiences that make up our individuality (Burke, 1969; Perelman & Olbrechts-Tyteca, 1969). Hence, rhetorical theory has much to add to our understanding of the tension between idiosyncracy and commonality so essential to health communication. The rhetorical tradition also offers resources for bridging theory and practice. As noted earlier, Craig (1999) discusses ways that rhetorical theory both appeals to the common sense of everyday discourse (e.g., the value of informed judgment and the improvability of practice) and challenges metadiscursive commonplaces (e.g., mere words are not actions, appearance is not reality, style is not substance, and opinion is not truth) (p. 133). Consider, for instance, the many changes in the style of health care practice wrought by managed care (Lammers & Geist, 1997; Mattson & Brann, 2002; Miller, 2001). In its extensive considerations of style, rhetorical theory can be used to challenge policymakers (see Chapter 18), insurers, and pracitioners who wish to maintain that these profound changes in the style of health communication and care are not also profound changes in the substance of communication and care. The Semiotic Tradition

According to Craig (1999), the semiotic tradition theorizes communication as intersubjective mediation by signs and sign systems. A “crucial and revolutionary aspect” of semiotics, as developed in the work of Ferdinand de Saussure, is its “insistence on the primacy of relations and systems of relations. . . . The strategy can be stated most simply as a shift in focus, from objects to relations. It is relationships that create and define objects, not the other way around” (Culler, 1986, p. 147). Hence, semiotics problematizes the nature of individual signs and meanings, positing instead that signs are meaningful only in relation to other signs. Intersubjectivity, then, arises to the extent that webs of relationships are shared by communicators. Semiotics has important implications for the distinctive tensions in health communication described above. For instance, consider the tension between the realms of communication and the body. Knuf and Caughlin (1993) illuminate the ways that diet advertising builds up new systems of representation in which the body and self are transformed. Splashy linguistic and glossy visual signs link the body to vitality, social acceptability, and self-esteem. Moreover, through the process of “symbolic inversion,” weight reduction is transformed into the consumption of products, and an industrial diet product takes the place of natural foodstuffs. In these ways, viewers are socialized into a pattern of chronic

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dependence on diet products and the diet industry—a dependence on outside assistance— rather than seeing weight reduction as an uncommodified moderation of calorie intake and expenditure. Similarly, Gemin (1997) analyzes the semiotic production of codependent identities. Semiotic insights also can be used to promote positive innovations in health communication practice. Craig (1999) notes ways that semiotic theory both appeals to some commonsense postulates of everyday discourse (e.g., understanding requires a common language; the danger of miscommunication is omnipresent) and challenges other metadiscursive commonplaces (e.g., words have correct meanings and stand for thoughts; codes and media are neutral). Consider, for instance, the widespread (though sometimes reluctant) embrace of new technologies as media for health communication. Web sites sanctioned by medical authorities convey not only accurate content but also, inescapably, the medical establishment’s imprimatur on patients’ self-directed study of disease, self-diagnosis, and self-treatment. Although these authoritative sites may urge visitors to consult a physician, the cautionary notes cannot remove the necessity of an initial judgment of health status by the patient or Web visitor, nor are the admonishments likely to deter the majority of people willing to diagnose and treat themselves. Semiotic theory thus suggests important issues that must be managed by would-be sources and users of health information. The Phenomenological Tradition

As Craig (1999) characterizes it, the phenomenological tradition theorizes communication as dialogue or experience of otherness: Authentic communication, or dialogue, is founded on the experience of direct, unmediated contact with others. Communicative understanding begins in prereflexive experience arising from our bodily existence in a shared lifeworld. . . . Hence, phenomenology challenges the semiotic notion that intersubjective understanding can be mediated only by signs (Stewart, 1995, 1996), as well as the rhetorical notion that communication involves artful or strategic uses of signs. . . . Among the paradoxes of communication that phenomenology brings to light is that conscious goal seeking, however benevolent ones intentions may be, annihilates dialogue by interposing one’s own goals and strategies as a barrier against one’s direct experience of self and other. (pp. 138–139)

Outside of Rogerian psychotherapy, phenomenological approaches to health communication have been rare (for exceptions, see Orbe & King, 2000; Peterson, 1987; also see Mattson, 2000). Nonetheless, this tradition can be used to derive important ideas about the tensions that characterize health communication. For instance, consider the tension between the realms of communication and the body. Zook (1994) argued that both the biomedical and biopsychosocial models are based on dualistic conceptions of mind and body that misapprehend both the nature of health and illness and of communication. In the biomedical model, illness is reduced to biological pathology (i.e., disease), whereas the biopsychosocial model allows for the interdependence of psychological, social, and physiological factors. But in both models, according to Zook, “biological function is affirmed as the foundation of health” (p. 358), and communication serves to further colonize a lifeworld of predefined biological health (p. 359). By contrast, a phenomenological theory of health and communication opens the way to a truly holistic conception of health as a state of being-in-the-world.

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Being-in-the-world is . . . being-embodied. Our experience of the world arises first and foremost within the prereflective unity of body and self in lived experience. Embodiment thus precedes the more narrowly constructed “body as idea (i.e., object)” that we find in both medical models. As such, the question of the meaning of our being [e.g., an ache, a lump] is not merely a concern—it is the concern. (p. 363)

The phenomenlogical tradition also offers avenues for influencing health communication and health care practice. Notably, Craig (1999) identifies ways that the tradition appeals to the common sense of everyday discourse (e.g., we all need human contact; we should treat others as persons, respect differences, and seek common ground) and challenges other common beliefs (e.g., communication is skill; the word is not the thing; facts are objective and values subjective) (p. 133). As just one example, phenomenology challenges widespread practice by suggesting that skill instruction, strategy, and artifice, rather than improving communication, create barriers to authentic contact between patients and care providers. Rather than imposing preconceived understandings, health care providers and patients should be encouraged to cultivate sensitivity and openness (Mattson, 2000). The Cybernetic Tradition

Craig (1999) contends that, in the cybernetic tradition, communication is theorized as information processing—processing that allows systems to function (and often causes them to malfunction). Communication involves encoding, transmission, and decoding. Moreover, depending on the focus and complexity of the particular theory, communication can also include feedback and more or less complex system regulation and environmental impact. (Of course, a system and its environment together constitute an encompassing supersystem, and hence “environmental impact” is just another instance of information processing.) Theories in the cybernetic tradition are clearly suited to studying characteristic tensions in health communication (Donohew & Ray, 1990). For instance, theories in this tradition have much to tell us about the tensions between the realms of communication and the body insofar as they are conceived as distinguishable yet interrelated systems. Moreover, family systems theories (Bochner & Eisenberg, 1987; Minuchin, 1974; Watzlawick, Beavin, & Jackson, 1967; Whitchurch & Constantine, 1993) are applicable to the tension between idiosyncracy and commonality. A member’s illness stresses the family system (e.g., creating role and boundary ambiguity; see Boss, 1999; Northouse & Northouse, 1998, chap. 3). Interdependence forges a common experience among family members. However, individuals are themselves open systems and are elements within many systems in addition to the family. The particular, unique configuration of each individual’s relationships to these other systems creates idiosyncratic experiences and meanings of the very illness that disturbs the entire family. In addition to its suitability for studying the distinctive tensions of health communication, the cybernetic tradition also offers resources for bridging theory and practice. Craig (1999) discusses several ways that this tradition appeals to the common sense of everyday discourse (e.g., the mind and brain are identical; information and logic are valuable; complex systems can be unpredictable) and challenges other commonplace notions (e.g., humans and machines differ; emotion is not logical; cause and effect are linear). For instance, systems theory counters the resilient and pernicious linear effects notion that patient “noncompliance” is a function of some characteristic of the patient (e.g., ignorance or irresponsibility) or the physician (e.g., inadequate compliance-gaining ability). Systems

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thinking suggests that control and resistence are mutually conditioning features of the traditional hierarchical relationship. Fadiman’s (1997) depiction of the “collision” between the Hmong and the American medical establishment provides a poignant example of this dynamic. Although health-promoting change might be accomplished to some degree by first-order changes, such as the physician pressing less and/or the patient complying more, the fundamental dynamic can only change by a second-order transformation in the nature of the relationship (Watzlawick, Weakland, & Fisch, 1974). The Sociopsychological Tradition

Communication, according to the sociopsychological tradition, is “a process in which the behavior of humans or other complex organisms expresses psychological mechanisms, states, and traits and, through interaction with similar expressions of other individuals, produces a range of cognitive, emotional, and behavioral effects” (Craig, 1999, p. 143). Although this tradition has implications for all four of the distinctive tensions in health communication, the most obvious are related to the tension between (un)certainty and values. A wide range of theories and foci illustrate this point. For instance, theories of health beliefs (Janz & Becker, 1984; Mattson, 1999), risk (Friedman et al., 1999), fear (Berger, 1998; Witte, 1992), compliance (Burgoon, Birk, & Hall, 1991), social support (Albrecht & Adelman, 1987, especially chap. 11; Ford et al., 1996), uncertainty management (Brashers, in press), and problematic integration (Babrow, 1992; Hines, in press) all grapple in some way with uncertainties and values. Ultimately, each of these theories must confront the tensions between expectations and uncertainties on the one hand and values, desires, and wishes on the other (Babrow, 2001-a, in press-b). The sociopsychological tradition also has both commonsensical and unobvious implications for health communication practice. Craig (1999) notes that these theories appeal to commonly accepted ideas: that communication reflects personality, that beliefs and feelings bias judgments, and that people in groups affect one another. These models also counter familiar notions: that humans are rational beings, that we know our own minds, and that we know what we see. For example, explaining illness is more than merely processing clear and thorough information; rather, it is working out health beliefs and uncertainties within the context of related beliefs and values that constitute our sense of self, roles, and relationships through interaction with health care providers, loved ones, and others (Babrow et al., 2000; Mattson, 1999; more generally, see Whaley, 2000). Sociocultural Tradition

Craig (1999) states that the sociocultural tradition views communication as “a symbolic process that produces and reproduces shared sociocultural patterns” (p. 144). In other words, shared systems of beliefs, values, language, political economy, and various other institutional arrangements make communication possible. Moreover, our communication reproduces these very arrangements. Still, as Craig notes, in given interactions and across time, there is need and opportunity for improvisation and hence for the production of new sociocultural arrangements. [Communication problems] are thought of as gaps across space (sociocultural diversity and relativity) and across time (sociocultural change) that disable interactions by depleting the stock of shared patterns on which interaction depends. Conflicts, misunderstandings, and difficulties in coordination increase when social conditions afford a scarcity of shared rituals,

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rules, and expectations. . . . Such perturbations in the ecology of codes and media disrupt interaction, but at the same time enable the creative production of new meanings and new means of communication. (p. 145)

Whereas the sociocultural tradition is relevant to all of the four distinctive tensions in health communication, it has especially significant implications for the tension between scientific and humanistic assumptions, values, aspirations, and limitations. In particular, cross-cultural studies reveal the enormous difficulties of reconciling the perspective of Western allopathic medicine with that of indigenous healing. Fadiman (1997) provides compelling illustrations. Consider the dilemma faced by a physician when the mother of a Hmong patient was unable or unwilling to follow a clearly effective medical prescription deemed necessary for the child’s survival and then threatened—with some credibility— to kill herself and her remaining children in response to the physician’s threat to have the child removed by Child Protective Services. As another example, a Hmong mother perceived the removal of a soiled string around her baby’s wrist when she was admitted for emergency treatment as a life-threatening act; in the mother’s view, an evil spirit, or dab, might steal the child’s spirit once the securing string was removed. In other words, the most basic assumption of Western medicine, that well-established medical science trumps all other forms of knowledge, may be overturned when cultures interact (also see Airhihenbuwa, 1995; Geist, 1994). Like the other traditions, the sociocultural tradition can be linked in important ways to practice. Craig (1999) suggests that sociocultural theories can appeal to common-sense notions such as the idea that the individual is a product of society, every society has a distinct culture, and social actions have unintended effects. He also notes that these theories challenge belief in individual agency and responsibility, the absolute identity of self, and the naturalness of the social order. Obviously, then, sociocultural theories represent a substantial challenge to sociopsychological approaches to the problem of “noncompliance” (see Mishler, 1984). The Critical Tradition

Finally, according to the critical tradition, genuine communication occurs in the process of discursive reflection, but material and ideological practices in society often preclude or distort discursive reflection and hence prevent authentic communication (Craig, 1999). Ray’s (1996) collection of essays on communication and disenfranchisement offers numerous powerful examples of the application of critical theory to health and illness: [The] volume examines the communication-disenfranchisement relationship, specifically how it is accomplished, managed, and overcome. Through interactions with the family, friends, and institutions, and from the mass media, definitions of acceptable identities, acceptable behaviors, acceptable topics of discussion, and acceptable expectations are made clear as to who “fits” where in American society, who controls the resources, who makes the decisions, and who sets the social standards. (p. xvi)

Critical theorists and researchers attempt to uncover the material practices and hegemonic ideologies that distort communication. Like the other six traditions Craig (1999) identifies, critical theory is highly relevant to the various distinctive tensions in health communication. For instance, the tensions

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between scientific and humanistic assumptions and values and between idiosyncracy and commonality appear to be consistent with key tensions in feminist thought (Bullis & Bach, 1996). These same dialectical oppositions are illustrated in Babrow and Kline’s (2000) application of problematic integration theory to critique the “ideology of uncertainty reduction” that ignores or delegitimizes women’s experience of breast self-exams. As one more example, Mattson, Clair, Sanger, and Kunkel (2000) illuminate the tension between idiosyncracy and commonality in a case study of a woman’s search for social support. The relevance of critical theory to distinctive features of health communication also suggests significant opportunities to address practice. Craig (1999) notes that the critical tradition both appeals to the common sense of everyday discourse (e.g., power and wealth perpetuate themselves; freedom, equality, and reason are of value; discussion produces awareness and insight) and challenges metadiscursive commonplaces (e.g., the traditional social order is both natural and rational; science and technology are objective) (p. 133). The most important of these challenges arises in the critical analysis of power relationships in health care institutions and practices (Foucault, 1973). For example, Lupton (1994), who has written some of the most trenchant works in this area, argues the following: Although the health promotion perspective relies heavily on a critique of the biomedical model, it fails to challenge the hegemony of ideologies that deflect the responsibility of health maintenance from the state to the individual (Stevenson & Burke, 1991). The role of culture is reduced to emphasis on “lifestyle” choices, and health or ill-health states are still regarded as being “externalized” to the body rather than being products of social processes (Hepburn, 1988, p. 62). (p. 57)

Waitzkin (1991) has demonstrated that this critique applies not only to health promotion but with equal force to face-to-face encounters with health care providers. Summary

Numerous theoretical traditions have been useful in illuminating health communication. This is not surprising when one considers the affinity of these traditions for the four characteristic tensions that we believe lie at the heart of health communication. Although one might argue, therefore, that theory in this area is nondistinctive, we contend that the four tensions in health communication identified in this chapter constitute a unique gestalt. This is not to say that scholarship in the area should develop apart from the broader field; such a suggestion would parallel the equally distasteful proposition that the many traditions within communication theory ought to be held apart. We would like to see greater attention to the points of common concern. At these junctures there is ample room for recognition of shared understanding as well as debate. In this sense, discourse along the lines suggested by the four characteristic tensions in health communication (also see Craig’s (1999) topoi for argumentation) should prove salutary both in health communication research and application and in the communication field as a whole. CONCLUSION

The prospect of writing this chapter, when we first considered it, was both exciting and daunting. It was intellectually and politically exhilarating to have the opportunity to reflect on and perhaps shape scholars’, students’, and practitioners’ understandings of such a

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vibrant field of research. It was also unnerving to face the challenge of constructing a meaningful view that took into account the diversity and ongoing growth characteristic of the field. In this chapter, we offer not so much a review of extant health communication theory as a view of what such theorizing has been and could be like. This choice was motivated by our confidence that the other chapters would cover the varieties of theory that we only touch on here. Moreover, rather than discussing specific theories, we decided to speak primarily at a more general level. In making this decision, we took some guidance from Craig’s (1999) important work. Specifically, rather than emphasizing particular metatheoretical questions, such as those reviewed by Anderson (1996), or recapitulating epistemologically based frameworks that have been so well articulated in past works (e.g., Bochner, 1984, 1994; Deetz, 1996), we tried to focus more centrally on communication processes, practices, structures, and content. The emphasis on communication rather than epistemology is evident, first of all, in our discussion of what we take to be four distinctive tensions characteristic of health communication: between the realms of communication and the body; between scientific and humanistic assumptions, values, aspirations and limitations; between idiosyncracy and commonality; and between (un)certainties and values. In developing these themes, we were conscious of their limits, but we pressed on in the hope that the chapter would stimulate further efforts to articulate the essence of health communication. We believe that this focus ultimately will be more fruitful than the typically terse, underelaborated attempts to define health communication that have been offered in the past. In short, we hope to foster the sort of dialogue that will promote discipline building. Indeed, we chose to use Craig’s (1999) analysis of communication theory as a framework because of its focus on communication. This is the second way in which the chapter is communication-rather than epistemology-centered. As we worked our way through Craig’s analysis, we were struck not only by its elegance but also by its unavoidable limitations. Again, the map is not the territory. But in the spirit of his work, we offer our application of Craig’s perspective in the hope that it will foster cross-tradition dialogue and discipline-building. One important aspect of his work that we have mentioned fleetingly in this chapter is his analysis of topoi for argumentation across traditions. Such dialogue about health communication, whether or not it takes the specific forms outlined by Craig, will be essential to synthesis of diversity and unity that must constitute the future of health communication theory. Finally, we hope that this chapter on theory will also foster application. As we said earlier, concerns about the contributions of health communication theory to practice have little to do with the nature of theory and more to do with the activities of theorists who fail to complete the circle in which theory and practice interpenetrate. The discussion of various traditions provides some indication of the sorts of practical implications that theories provide. Although the different traditions give rise to very different stances on the social significance of theory (see Anderson, 1996, chap. 8), ultimately the worth of what we do as theorists will be determined by how our theories are applied in practice. REFERENCES Abramson, L. Y., Garber, J., & Seligman, M. E. P. (1980). Learned helplessness in humans: An attributional analysis. In J. Garber & M. E. P. Seligman (Eds.), Human helplessness: Theory and applications (pp. 3–57). New York: Academic Press.

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Peterson, E. E. (1987). The stories of pregnancy: On interpretation of small-group cultures. Communication Quarterly, 35, 39–47. Pettegrew, L. S., & Logan, R. (1987). The health care context. In C. R. Berger & S. H. Chaffee (Eds.), Handbook of communication science (pp. 675–709). Newbury Park, CA: Sage. Procter, R. (1992). Preserving the tie that binds: A response to Berger’s essay. Communication Monographs, 59, 98–100. Purcell, B. (1992). Are there so few communication theories? Communication Monographs, 59, 94–97. Ratzan, S., Payne, J. G., & Bishop, C. (1996). The status and scope of health communication. Journal of Health Communication, 1, 25–41. Ray, E. B. (1996). Communication and disenfranchisement: Social health issues and implications. Hillsdale, NJ: Lawrence Erlbaum Associates. Reynolds, P. D. (1971). A primer in theory construction. Indianapolis, IN: Bobbs-Merrill. Rogers, E. M. (1996). The field of health communication today: An up-to-date report. Journal of Health Communication, 1, 15–23. Ross, L. M., & Pollio, H.R. (1991). Metaphors of death: A thematic analysis of personal meanings. Omega, 23, 291–307. Rothbaum, F. M., Weisz, J. R., & Snyder, S. S. (1982). Changing the world and changing the self: A two process model of perceived control. Journal of Personality and Social Psychology, 42, 5–37. Sharf, B. F. (1990). Physician-patient communication as interpersonal rhetoric: A narrative approach. Health Communication, 2, 217–231. Sharf, B. F. (1993). Reading the vital signs: Research in health care communication. Communication Monographs, 60, 35–41. Sheer, V. C., & Cline, R. J. (1995). Testing a model of perceived information adequacy and uncertainty reduction in physician-patient interactions. Journal of Applied Communication Research, 23, 44–59. Singleton, R. A., & Straits, B. C. (1999). Approaches to social research (3rd ed.). New York: Oxford University Press. Smith, D. H. (1989). Studying health communication: An agenda for the future. Health Communication, 1, 17–28. Smith, D. H. (1996). Ethics in the doctor-patient relationship. Medical Ethics, 12, 179–197. Solomon, M. (1985). The rhetoric of dehumanization: An analysis of medical reports of the Tuskegee syphilis project. Western Journal of Speech Communication, 49, 233–247. Sontag, S. (1978). Illness as metaphor. New York: Farrar, Straus & Giroux. Sontag, S. (1989). AIDS and its metaphors. New York: Farrar, Straus & Giroux. Stevenson, H. M., & Burke, M. (1991). Bureaucratic logic in new social movement clothing: The limits of health promotion research. Health Promotion International, 6, 281–289. Stewart, J. (1995). Language as articulate contact: Toward a post-semiotic philosophy of communication. Albany, NY: SUNY Press. Stewart, J. (Ed.). (1996). Beyond the symbol model: Reflections on the representational nature of language. Albany, NY: SUNY Press. Stroebe, W., & Stroebe, M. S. (1995). Social psychology and health. Pacific Grove, CA: Brooks/Cole. Taylor, S. E. (1983). Adjustment to threatening events: A theory of cognitive adaptation. American Psychologist, 38, 1161–1173. Thayer, L. (1982). What would a theory of communication be for? Journal of Applied Communication Research, 10, 21–28.

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4 Communication in Medical Encounters: An Ecological Perspective Richard L. Street, Jr. Texas A&M University

Has managed care made it harder for patients and physicians to talk openly and honestly with one another? Has the Internet changed the way patients communicate with their doctors? What effect are new state and federal health policies (e.g., patient bills of rights) having on the health care provider–patient relationship? To what extent do race and ethnicity affect decisions made during medical consultations? These are but a few of the questions currently being asked by a variety of stakeholders of the health care system, including policymakers, managed care corporations, health care providers, patients, and media pundits, to name a few. Those of us who study health communication should be both encouraged and troubled by these questions. On the one hand, they highlight the centrality of communication in the delivery of quality health care. On the other hand, despite over 40 years of research, we still do not know enough to adequately explain how a changing health care landscape is transforming the communicative dynamics of medical consultations. The primary shortcoming in our work is that, whereas we have examined provider–patient communication with respect to the participants’ characteristics and skills, we have done relatively little to develop and test theoretical models of the processes underlying these interactions, nor have we directed sufficient attention toward explaining the role of context in the medical encounter (Thorne & Paterson, 2001). In this chapter, I present an ecological perspective for the study of communication in medical encounters. Ecology, simply defined, is the study of interrelationships between organisms and their environments. An ecological perspective on communication in the medical consultation, then, looks at the interaction between health care providers and patients as situated within and affected by a variety of social contexts. This chapter places extant research within the framework of an ecological model in an effort to explain key

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processes germane to provider-patient interactions and to point to gaps in our understanding of these processes. The chapter concludes with a discussion of the implications of this model for future research. AN ECOLOGICAL MODEL OF COMMUNICATION IN MEDICAL ENCOUNTERS

Figure 4.1 presents an ecological model of communication in medical consultations. Before elaborating on the model, I will highlight several features of my analysis. First, although the medical encounter may be contextualized in a number of ways, I focus on how communication in these interactions is (or can be) affected by the interpersonal, organizational, media, political-legal, and cultural environments within which they take place. Second, whereas any of these contexts may influence the course of a communicative event, the one within which the consultation is most fundamentally embedded is the interpersonal context (see Fig. 4.1). In other words, what unfolds during the encounter ultimately depends on the communicative actions that emerge directly from interactants’ goals, linguistic skills, perceptions, emotions, and knowledge as well as from the constraints and opportunities created by the responses of their partners (Street, 1991, 1992b). Third, the primacy of individual and partner influences on communication should not imply that broader noninterpersonal factors do not affect the interaction. However, these influences will have an impact to the extent that they can be linked to affective, cognitive, and behavioral processes affecting the production and perception of talk. Finally, because these noninterpersonal contexts are broad, complex, and multifaceted, I examine their potential impact on medical encounters with respect to current societal concerns. For the purposes of this chapter, these include managed care (the organizational context), the Internet (the media environment), malpractice and patient bills of rights (the political-legal context), and race and ethnicity (the cultural context). THE INTERPERSONAL CONTEXT

To date, the medical encounter has primarily been studied as an interpersonal communication event. One line of inquiry examines how patterns of provider-patient communication are related to the attributes of the patient (e.g., education, age, health status), the provider (gender, medical specialty), and their relationship (rapport, trust) (for reviews, see Ong, De Haes, Hoos, & Lammes, 1995; Roter & Hall, 1993; Roter, Hall, & Katz, 1988; Street, 2001; Thompson, 1994). A second area of research examines relationships between providers’ and patients’ communicative actions and the various outcomes (mostly patient focused) resulting from the consultation (e.g., satisfaction with care, commitment to treatment, health improvement) (for reviews, see Roter & Hall, 1993; Stewart, 1995; Street, 2001). Although these studies have identified sources of variability in the communicative content, structure, and outcomes of medical encounters, they do little to explain processes accounting for these phenomena. Such an understanding is crucial if we are to discover ways in which medical consultations are affected by the contexts in which they are situated. The Communicative Ontology of Medical Encounters

Like other types of social interaction, the medical consultation is a dynamic, creative, and socially constructed event. Although certain technical activities may take place

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Goals Perception of partner Perception of relationship Communicative strategies Emotional state

Goals Perception of partner Perception of relationship Communicative strategies Emotional state

Race/ethnicity Socioeconomic status Religion, etc.

CULTURAL CONTEXT

Cognitive-affective influences

Cognitive-affective influences

Figure 4.1 An ecological model of communication in medical encounters.

Internet Telemedicine Mass media, etc.

MEDIA CONTEXT

Verbal and Nonverbal Behavior

Communication style Self-concept (attitudes, beliefs, personality) Linguistic resources

Verbal and Nonverbal Behavior

Predisposing influences

Communication style Self-concept (attitudes, beliefs, personality) Linguistic resources

The Patient

Predisposing influences

The Health Care Provider

INTERPERSONAL CONTEXT

Managed care Services offered, Standards of care, etc

ORGANIZATIONAL CONTEXT

Malpractice litigation Patient bill of rights Medicaid/Medicare coverage etc.

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(e.g., a physical examination, a hypodermic injection), the primary activity is talk as the provider and patient exchange information about health-related concerns; make decisions about medical care; and, in the best of cases, establish or maintain a relationship characterized by rapport, trust, and respect. How the interaction unfolds depends on how the participants select, adapt, and coordinate their responses to accomplish their individual and mutual goals. Although each medical encounter has its own unique and idiosyncratic characteristics, it is not a random or chaotic event. In fact, medical encounters reveal a variety of recurring patterns of communicative exchange. To describe processes within the interpersonal context that affect communicative action, I have drawn heavily from social-cognitive models of interpersonal communication (see, e.g., Giles & Street, 1994; Greene, 1984; Patterson, 1983) as well as from previous conceptual work on provider-patient communication (Ong et al., 1995; Pendleton & Bochner, 1980; Roter, 1977; Street, 2001). To understand the communicative dynamics of medical consultations, one must recognize that communication reveals both consistency and adaptation. For example, most people tend to use certain verbal and nonverbal responses across a wide variety of interactions. A doctor who has a friendly and animated communication style may be inclined to be facially expressive and talkative and use humor in most of his or her interactions with patients. However, communication is also adaptive, as interactants adjust their responses in light of their situation-specific goals, their perceptions of their partners, the purpose of the interaction, and the actions of their partner. Thus, this animated, friendly doctor will be more reserved and serious when consoling a patient who is emotionally distraught or who has just been diagnosed with a serious disease. In the model presented in Fig. 4.1, processes related to communicative consistency and adaptation fall within one of three categories: predispositional influences, cognitive-affective mediators, and adaptations in response to a partner’s communicative actions. Predispositional Influences

When researchers try to identify individual differences in the way health care providers and patients talk with one another, they are in essence assuming that people are rather consistent in their communication across different situations and that certain kinds of people (e.g., women, the elderly) communicate in similar ways. Communicative predispositions are reflected in one’s individual communication or self-presentation style (Giles & Street, 1994). Norton (1983) has identified a number of communication styles (e.g., expressive, dominant, open, attentive) and treats them as relatively stable features of a person’s social behavior. As shown in Fig. 4.1, communication style is often related to personal factors that are objective (e.g., age, sex, level of education) and subjective (e.g., self-concept, personality) features of ourselves and our socialization (Giles & Street, 1994). Communication style is also linked to one’s linguistic repertoire. For example, a person who has a dominant and fluent communication style not only has the inclination to be assertive but also has access to an array of linguistic resources that can be quickly and efficiently assembled to produce utterances (see, e.g., Greene & Geddes, 1993; Street, in press). Health Care Providers. The communication styles of health care providers has been examined in two ways. First, some studies have studied how individual clinicians interact with different patients. Byrne and Long (1976) observed that some doctors have rather intractable, controlling communication styles that they use in most of their consultations. Roter and Hall (1993) observed that doctors in their investigations tend to have either a “patient-centered” style or a “doctor-centered” style. The former is characterized

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by responses designed to elicit and accommodate the patient’s perspective in the consultation (e.g., open-ended questions, requesting opinions and concerns, counseling, offering support) whereas the latter style is focused primarily on maintaining clinician control (e.g., close-ended questions, giving directions, attention to the patient’s physical functions, interruptions) and efficiently completing the tasks of the consultation. Finally, Street (1992b) reported that, even after controlling for the patients’ demographic characteristics and degree of participation in the consultation, individual physicians varied in how often they provided information, used partnership-building, and displayed positive socioemotional behavior (e.g., reassurance, encouragement). A second line of research tries to identify whether certain types of health care providers have different styles of communicating. By far the most widely studied individual difference variable has been gender. Compared to male doctors, female doctors generally have longer consultations, give more information, engage in more partnership-building, express more interest in psychosocial aspects of health (e.g., emotions, lifestyle, family), are less directive, do less history taking, and are more explicitly reassuring and encouraging (Bernzweig, Takayama, Phibbs, Lewis, & Pantell, 1997; Bertakis, Helms, Callahan, Azari, & Robbins, 1995; Elderkin-Thompson & Waitzkin, 1999; Hall, Irish, Roter, Ehrlich, & Miller, 1994; Meeuwesen, Schaap, & van der Staak, 1991; Roter, Lipkin, & Korsgaard, 1991). Others have investigated whether a clinician’s communicative predispositions are related to certain beliefs and ideologies. For example, physicians with more positive attitudes toward psychosocial aspects of care use more open-ended questions and make more statements of empathy and reassurance than do physicians less interested in psychosocial issues (Levinson & Roter, 1995). Even a physician’s political leanings may affect communication. As Waitzkin (1985) reported, physicians who consider themselves “liberal” spend more time giving information to patients than do “conservative” doctors. Patients. With respect to patients’ communicative styles, research generally has focused on individual differences. For example, a number of studies have shown that patients with more formal education are more expressive and opinionated than are less educated patients (Bain, 1979; Beisecker & Beisecker, 1990; Stewart, 1984; Street, 1991, 1992b; Street, Voigt, Geyer, Manning, & Swanson, 1995). These findings are likely attributable to several predisposing factors: patients with more formal education (e.g., college educated) generally believe more strongly in patient involvement in health care (Cassileth, Zupkis, Sutton-Smith, & March, 1980; Degner & Sloan, 1992), have more knowledge about health issues (Bertakis, 1977; Street, Voigt et al., 1995), are more familiar with medical terminology (Spiro & Heidrich, 1983), and are more inclined to be verbally expressive (Waitzkin, 1985) than are less educated patients. Communication differences related to other personal and sociodemographic characteristics of patients are less clear-cut. Although some studies show that female patients are more likely than male patients to express their feelings and talk about health in relation to family, friends, and colleagues (Elderkin-Thompson & Waitzkin, 1999; Meeuwesen et al., 1991; Stewart, 1984), other studies report few differences in the communication of male and female patients (Roter et al., 1991). With respect to the patient’s age, some have found that older patients are more likely than younger ones to believe that the clinician is in charge of the consultation and is primarily responsible for medical decisions (Cassileth et al., 1980; Degner & Sloan, 1992; Haug, 1979). However, whereas older patients may be less assertive and verbally active in medical encounters (Haug & Lavin, 1981; Street, Voigt, et al., 1995), some researchers have reported few differences in how younger and

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older patients communicate with their providers (Greene, Adelman, Charon, & Hoffman, 1986). Finally, personality factors also may influence a patient’s style of communication. In pediatric settings, two studies found that mothers who were more open and extroverted and had a internal locus of control asked more questions, gave more information, and more frequently asked for reassurance than did mothers scoring lower on these personality dimensions (Eaton & Tinsley, 1999; Howell-Koran & Tinsley, 1990). To actively participate in the medical encounter, a patient also must have a sufficiently developed repertoire of linguistic and informational resources for communicating with providers so that talk can be produced in a smooth and effortless manner (Street, 2001). For example, a patient will have difficulty discussing a particular health issue if he or she lacks knowledge about the topic or its terminology (Street, Voigt, et al., 1995). Thus, it is not surprising that health care comsumers who have more skill and confidence in their ability to talk to doctors tend to provide more information, ask more questions, and generally speak longer in their consultation than patients with less skill and self-efficacy (Eaton & Tinsley, 1999; Kroll et al., 2000). In this section, I have described how providers’ and patients’ communicative actions are related to various predispositional influences. However, many would argue that how one communicates in large part depends on the situation. That is, providers and patients will adapt their behavior to different partners, in different types of interactions, and for different purposes. Below I discuss two types of situation-specific influences: (a) cognitiveaffective factors related to how one communicates within a specific interaction and (b) the opportunities and constraints created by a partner’s communicative actions. Cognitive-Affective Influences

For any interaction, communicators typically have a cognitive representation of the encounter that includes their goals, perceptions of their partner, expectations about what behaviors are appropriate, and possible trajectories in which the interaction will unfold (Giles & Street, 1994; Greene, 1984; Patterson, 1983). Such representations help guide us through the interaction and partially determine how we behave and how we interpret the behavior of others. I have labeled these types of situational influences as cognitive-affective influences to show how communication is related to strategic (e.g., goals, purpose), attributional (e.g., stereotypes, impressions), and relational (e.g., trust, familiarity) considerations. For example, a doctor may use more or less medical terminology depending on whether he or she thought the patient could understand technical explanations. Or a patient might be more willing to talk about sexual dysfunction with a physician he or she knows and trusts than with a doctor who is a stranger. Health Care Providers. Although health care providers may have distinctive styles of communicating, they also will talk differently to different types of patients. One explanation for these findings is that a clinician’s goals and attitudes toward different patients influence his or her behavior during the consultation (Roter & Hall, 1993). For example, when interacting with patients who are sicker or in poorer health, health care providers may conduct their consultations in a more serious and concerned manner (Bertakis, Callahan, Helms, Azari, & Robbins, 1995; Hall, Roter, Milburn, & Daltroy, 1996), focus more on the physical aspects of health (as opposed to asking about lifestyle and emotional well-being; Roter et al., 1997), and assume more control over the consultation (Kaplan, Gandek, Greenfield, Rogers, & Ware, 1995). Clinicians’ communicative

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adaptations in response to the patient’s health status may be due to several factors, including their attitudes about sicker patients, their frustration in dealing with complicated health conditions, and a perceived need to focus more on the physiological causes and consequences of poor health (Hall, Epstein, DeCiantis, & McNeil, 1993; John, Schwenk, Roi, & Cohen, 1987). Providers also vary their behavior depending on the patient’s age. If a clinician has a stereotype of the elderly as having diminished cognitive capacity, then he or she may use simplistic or exaggerated speech forms (e.g., “baby talk”; see Sachweh, 1998) or exert more control during the consultation (Kaplan et al., 1995). On the other hand, people also believe the elderly should be shown respect. This may explain why Hooper, Comstock, Goodwin, and Goodwin (1982) found that physicians showed more courtesy to patients over 70 years of age than to younger patients. Conversely, clinicians communicate differently to a juvenile patient than they do to the child’s parents. Pantell, Stewart, Dias, Wells, and Ross (1982) observed that the pediatricians in their study used mostly social conversation, reassurance, and encouragement when visiting with children and were more informative and problem-focused when talking to the parents. Not surprisingly, their study also reported that as children became older, doctors were more likely to discuss substantive issues with them. Finally, a number of studies have investigated whether providers communicate differently depending on the patient’s gender and ethnicity. These issues will be examined later in this essay. Patients. Research on patients’ communication also points to a number of situationspecific influences related to patients’ motivations and perceptions. For example, patients who are quite sick or who are worried about their health are probably highly motivated to express their feelings and talk about their needs and concerns, a claim supported by several studies (Hall et al., 1996; Street, 1992b; Wasserman, Inui, Barriatua, Carter, & Lippincott, 1983). However, health status alone does not necessarily predict what patients will talk about. In Street, Cauthen, Buchwald, and Wiprud’s (1995) study, patients who were experiencing some degree of emotional distress or social dysfunction were more willing to discuss these issues if they believed such topics were part of the doctor’s role responsibilities or if they had seen that doctor on previous visits. Similarly, Agne, Thompson, and Cusella (2000) found that patients were more willing to disclose their HIV status to a health care provider when they perceived a need to do so and when they were more comfortable with the provider. How patients respond to a provider’s personal characteristics (e.g., sex, age, ethnicity) has received little research attention, but anecdotes abound. The issue of gender bias in gynecology is an excellent example. Many women prefer female gynecologists (Schmittdiel, Selby, Grumbach, & Quesenberry, 1999) because they believe male doctors are not capable of understanding issues related to women’s reproductive concerns and sexuality. In my own work, patients on several occasions have made reference to a doctor’s “youthfulness” or revealed their preferences regarding different types of clinicians (e.g., nurse practitioner, family doctor, subspecialists). Although patients may have gender, age, and training biases for or against certain providers, the extent to which these biases manifest themselves in medical consultations remains unclear. Thus far, I have talked about providers’ and patients’ communication in relation to their goals, needs, purposes, and perceptions of their partners. However, the way in which clinicians and patients talk with one another is perhaps most strongly affected by the communicative actions of the other.

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Partner’s Communication Influences

Because interactants must cooperate and coordinate their responses to create a coherent and successful exchange, both the provider and the patient have the potential to exert considerable influence over the behavior of the other. On the one hand, a partner’s conversational contributions provide personal or topical information that one can use in formulating a response. However, a partner’s communicative actions are also constraining. For example, because there is a strong expectation that an “answer” should follow a “question” (Sacks, Schegloff, & Jefferson, 1974), an interactant may feel obligated to answer another’s question even if reluctant to or uninterested in doing so (Street, 1991). Also, because conversational contributions are expected to be topically connected (Tracy, 1985), an interactant who asks a question, offers an opinion, or makes some other substantive remark has introduced topical content that his or her partner is expected to incorporate into his or her forthcoming response. Health Care Providers. Because clinicians typically assume and are granted considerable control over the interaction, it is not surprising that the clinician’s communication will have a strong impact on the patient’s responses. Further, because the clinician will likely ask questions about biomedical issues and comment on these issues and because the patient will respond so as to satisfy the topical obligations raised by the clinician’s utterances, the consultation will often focus on biomedical aspects of health (Campbell, 1998). However, health care providers also can act in ways that encourage greater patient participation and a broader discussion of health issues. Many patients are unsure about their role in the encounter and the appropriateness of their participation (Roter & Hall, 1993). A provider who shows interest in what the patient is saying and solicits opinions or questions is in effect legitimizing the patient’s involvement as well as creating opportunities and expectations for the patient to elaborate on issues of concern (Street, Voigt, et al., 1995). A number of studies have found that patients tend to ask more questions, express their opinions more freely, provide more psychosocial information, and discuss their concerns more openly when clinicians use partnership-building and other types of patient-centered responses (Cox, 1989; Street, 1991, 1992b; Street & Millay, 2001; Thompson, Nanni, & Schwankovsky, 1990; Wissow, Roter, & Wilson, 1994; Wissow et al., 1998). Patients. Conversely, by being an active participant in the consultation, a patient helps shape the content and flow of the interaction, thereby attenuating the clinician’s control over the encounter. For example, by asking questions, expressing concerns, and telling their health “stories,” patients are providing valuable information about their healthrelated needs, beliefs, and behavior (Sharf, 1990; Street, 1991) that in turn the health care provider can use to make more personalized treatment recommendations (Henbest & Stewart, 1990). However, through their communicative actions, patients are also invoking conversational norms that may obligate clinicians to talk about a particular health issue. Several studies have reported that, compared with more passive patients, those who frequently ask questions, express their concerns, and offer opinions generally receive more information (Greenfield, Kaplan, & Ware, 1985; Street, 1991, 1992b), elicit more support and reassurance (Street, 1992b; Street & Millay, 2001), and are more likely to have doctors accommodate their treatment preferences (Schwatrz, Soumerai, & Avorn, 1989).

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The Interplay of Processes Affecting Health Care Provider-Patient Communication

Thus far, I have discussed predispositional influences, cognitive-affective influences, and partner’s communication influences as though each set of factors operated independently in shaping communication in medical consultations. They do not, of course, and this poses challenges for researchers trying to understand the communicative dynamics of medical encounters. A good example is found in research on the effect of gender in medical care. Although some argue that (male) doctors are more patronizing and domineering with female patients (Todd, 1989; West, 1984), the majority of evidence indicates that in general women patients are given more information (Waitzkin, 1985), receive more encouragement to express their feelings and opinions (Kaplan et al., 1995, Stewart, 1984), and have longer consultations (Meeuwesen et al., 1991) than do male patients. Although this may reflect the clinicians’ attitudes toward female patients or their beliefs about women’s health needs (see, e.g., Wallen, Waitzkin, & Stoeckle, 1979), other evidence suggests that it may be a partner’s communication effect given that women tend to ask more questions (Pendleton & Bochner, 1980; Wallen et al., 1979) and are more inclined to talk about psychosocial aspects of health (Meeuwesen et al., 1991) than are men. Relatedly, patients generally give more information, more freely express opinions, ask more questions, and engage in more positive talk with female physicians than they do with male physicians (Roter et al., 1991). Is this because of patients’ attitudes and their belief that women have less power and are easier to talk to than are male clinicians (see, e.g., West, 1993)? Or is it because female physicians tend to use more partnership-building behavior, are less controlling, ask more about psychosocial aspects of health, and engage in more social conversation with their patients (Meeuwesen et al., 1991; Roter et al., 1991)? In an effort to sort out these influences, Street (1992b) examined the extent to which physician and patient communicative behaviors were related uniquely to their personal characteristics, their partner’s characteristics, and their partner’s communication. Because the seven physicians in that study interacted with multiple patients, each was treated as a level of an independent “doctor” variable. Other predictors included patient characteristics (education, anxiety, and relational history with the doctor) as well as measures of patient question asking, expressions of concern, and opinion giving. The most consistent significant effect was attributed to the “doctor” variable in that the degree to which a doctor gave information, issued directives, engaged in partnership building, and provided positive socioemotional responses was to some extent unique to the doctor’s style (a predispositional influence). However, there were also significant effects related to the patient’s communication, as doctors gave more information and offered more support and encouragement to patients who asked questions and expressed concerns. Interestingly, of the patient characteristics variables, only level of education uniquely explained variation in the physicians’ communication, as doctors engaged in more partnership-building with the more educated patients (see also Kaplan et al., 1995). This study also found that patients did not talk differently to individual doctors per se, but they did ask more questions and offer more opinions when physicians more frequently used partnership-building behaviors. In addition, patients’ communication to some extent was uniquely related to their personal characteristics, as more educated patients asked more questions and offered more opinions, and more worried patients expressed more concerns. In short, if we are to discover how other organizational, media, political-legal,

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and cultural contexts affect communication in medical consultations, scholars must continue to unravel the fundamental interpersonal processes affecting the way health care providers and patients talk with one another. THE ORGANIZATIONAL CONTEXT: IMPACT OF MANAGED CARE

The organizational context of health care is quite complex, and provider-patient communication could be affected by any number of organizational features—the size of the health care facility, types of services offered, location, clientele, standards of care, and so forth. However, over the last 2 decades, perhaps the most talked about and publicly debated health topic has been the growth of managed care as a system of financing and delivering medical care. Below I examine the potential impact of managed care on provider-patient communication in medical consultations. Managed Care: An Overview

It is important to recognize that managed care is not monolithic. In the 1980s, managed care generally meant care provided by HMOs (health maintenance organizations) or prepaid health plans. However, as we enter the 21st century, managed care has grown into a complex and multifaceted phenomenon with no singular identity. Wagner (1997) offers a simple but useful continuum of managed care. At one end is managed indemnity, which may be little more than precertification for elective services and case management of catastrophic conditions within a traditional indemnity plan. At the other end are the staff and group model HMOs that provide care for a fixed amount per person per year. Between these two extremes are a variety of other models of managed care (e.g., independent practice associations, preferred provider organizations), most of which are hybrids of prepaid plans, indemnity coverage, and contracts for services at a fixed or reduced cost. Hence, practically all medical care is “managed” in some way, shape, or form. Public and scholarly opinion is strongly divided on the merits of managed care. On the one hand, managed care organizations have been criticized for creating policies that restrict a patient’s choice of physician, reduce the time physicians can spend with patients, restrict access to care, and place medical decisions in the hands of business managers rather than patients and providers (Birenbaum, 1997; Ginzberg, 1997; Lammers & Geist, 1997). Many physicians believe managed care has pressured them to see more patients per day, limited their autonomy, and made it more difficult to support patient involvement in the consultation (Feldman, Novack, & Gracely, 1998; Grumbach, Osmond, Vranizan, Jaffe, & Bindman, 1998). On the other hand, proponents argue that managed care actually can improve quality of care and even strengthen the provider-patient relationship if the organization facilitates patient access to specialists and other services, encourages and rewards clinicians for patient-centered care (as measured by patient satisfaction scores), and provides patients with health education and disease management resources (Goold & Lipkin, 1999; Lo, 1999; Saxton & Leamon, 1998). Managed Care and Provider-Patient Communication

Within the framework of the ecological model, the policies, practices, and culture of managed care will most likely have their biggest impact on the provider’s and patient’s consultation goals as well as their perceptions of one another (i.e., cognitive-affective factors). In particular, the influence of managed care could (but not necessarily will) result

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in greater clinician control of the interaction, less trust between provider and patient, and more frequent discussion of topics related to health promotion. Control. As mentioned earlier, a provider and a patient generally communicate in a way that reflects and reinforces the provider’s dominance. Under managed care, control may shift even more toward the provider. For example, many managed care physicians see their role as gatekeepers to expensive procedures and specialists as interfering with their ability to respect patient autonomy (Feldman et al., 1998). Many physicians also feel pressured to see more patients for shorter periods of time (Grumbach et al., 1998). Thus, under the constraints of managed care, providers may have a stronger motivation to control the consultation by talking more, interrupting, rejecting the patient’s requests, and issuing more directives. Greater clinician control in turn will reduce patient participation (Biesecker & Biesecker, 1990; Street et al., 1993). However, to say that managed care necessarily results in greater clinician control greatly oversimplifies other factors operating within the interpersonal context of the consultation. For one thing, providers have multiple motivations during patient visits, some of which will mitigate organizational constraints. For example, although providers may feel obligated to adhere to their gatekeeping responsibilities and time constraints, they also try to accommodate the patient’s individual needs and preferences (Feldman et al., 1998). Also, as discussed earlier, it will be hard for a provider to rush through or dominate the interaction if the patient chooses to actively participate in the consultation by asking questions, expressing opinions, and responding in other ways to influence the course of the consultation (Street, 1991, 1992b). A recent study by Gallagher, Lo, Chesney, and Christensen, (1997) highlights the complex interplay of organizational practices, the doctor’s multiple goals, and the patient’s communicative actions. In a study involving 39 internists, a standardized patient (unknown to the physicians) asked for an MRI, an expensive and in this case an unindicated procedure. At one extreme were 3 physicians who immediately agreed to perform the test. At the other extreme were several doctors who refused the request and criticized the patient for being paranoid. Most of the physicians did discuss the patient’s reasons for wanting the test and explained why they thought the test was not necessary. Importantly, over half of the doctors (n = 20) did agree to refer the patient to a neurologist. Trust. On the one hand, managed care may diminish patients’ trust in their health care providers. Compared with fee-for-service patients, those enrolled in managed care plans are more likely to have had a disruption in their primary care because their employers changed health plans. Discontinuity of care in turn threatens trust because of the breakup of an established provider-patient relationship (Flocke, Stange, & Zyzanski, 1997). Also, media attention to managed care “horror” stories involving medical errors and withheld services fosters the belief that doctors put profit above patient care (Freidson, 1989; Mechanic & Schlesinger, 1996). When there is a climate of mistrust or uncertainty, patients are less willing to discuss personal, sensitive, and potentially embarrassing topics with their doctors (Street, Cauthen, et al., 1995). Patients also become suspicious of their doctors’ motives for recommending against referrals or tests no matter how sound the recommendations (Gold, 1999; Lo, 1999; Saxton & Leamon, 1998). Physicians, too, may become overly cautious in their consultations because of their own concerns about patient trust (Levinson et al., 1999). On the other hand, trust between providers and patients is strongly influenced by what happens during consultations. For example, Thom and Campbell (1997) reported that most

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of the people in their focus groups believed that trust was primarily related to the physician’s behavior (e.g., thoroughness of the evaluation, expressing caring, understanding the patient’s experience) and secondarily to external factors (e.g., structural or staffing issues). In a related study, Holloway, Matson, and Zismer (1989) found that patient satisfaction with care (which is often linked to trust) was more strongly predicted by perceptions of the doctor’s sensitivity and provision of personalized medical care, factors that emerge during the consultation, than by whether the doctor was practicing in an HMO or a feefor-service setting. Hence, the patient’s initial sense of trust (or mistrust) upon entering the consultation may be dramatically changed, positively or negatively, depending on the doctor’s communicative performance during the interaction. Promoting Health and Disease Management. Thus far, I have discussed how managed care could have deleterious effects on provider-patient communication and quality of care. On the positive side, managed care does place an emphasis on disease prevention, disease management, and early diagnosis of life-threatening conditions. An organizational emphasis on health promotion could motivate providers to spend more time talking to patients about health maintenance and wellness. Moreover, regardless of whether the organization’s motives are pure (profits are enhanced when people are healthy), patients tend to be more satisfied with their health care when their health plans offer programs for weight control, smoking cessation, cholesterol screening, and other types of health promotion (Schauffler, Rodriguez, & Milstein, 1996). On the other hand, many physicians are not comfortable talking to patients about lifestyle and health-related quality of life unless such discussion is tied to a specific medical condition (Freeman, 1987). Others steer away from these topics, believing that they are too time consuming (Campbell, 1998). In short, although the organization may promote the importance of health maintenance and disease prevention, providers may have other competing goals that cause them to give little more than lip service to these issues. Summary

Given the many forms of managed care and the variety of clinicians’ and patients’ goals for medical consultations, it is not surprising that research to date has not revealed a clear, definable effect of managed care on communication in medical encounters. Some studies have found that quality of care and provider-patient communication are better in fee-for-service than in managed care organizations. For example, Rubin et al. (1993) reported that patients seeing physicians in solo fee-for-service practices tended to rate their interactions with physicians more favorably than did patients seeking care in solo prepaid, multispecialty group, and HMO settings. In a study of Medicare beneficiaries having either HMO or indemnity coverage, patients expressed satisfaction with their care regardless of the system, but fee-for-service patients were more likely than HMO enrollees to indicate higher satisfaction with the quality of interaction with their physicians (Tudor, Riley, & Ingber, 1998). On the other hand, Callahan and Bertakis (1993) found that physician-patient interactions in the managed care environment they studied were actually longer, characterized by more questions from patients, and had more discussion of preventive care, disease management, and substance abuse than did consultations in the fee-for-service practice. These findings are consistent with those of Mechanic, McAlpine, and Rosenthal (2001), who reported that, contrary to popular belief, the growth of managed care between 1989 and 1998 has not led to shorter office visits. Therefore, to understand the impact of managed

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care (and other features of health care organizations) on medical consultations, researchers must account for how the complexity and structural features of these organizations affect the basic interpersonal processes underlying communicative action. THE MEDIA CONTEXT: IMPACT OF THE INTERNET

From the information we consume to the interactions we have with others, media technologies (e.g., printing and telecommunications) have become an essential part of everyday living. Health care providers and patients do not exist independent of these technologies. Using the telephone to triage a patient’s health concern, faxing medical information to a clinic, and watching health news coverage on television are but some of the many ways clinicians and patients use and depend on various media for health-related purposes. Although any type of media may serve in this capacity, the one that has received the most attention recently, and the one examined within the framework of the ecological model, is the Internet. The Internet is different from other media technologies because of the sheer amount of information that users have access to, the speed with which they can access it, and the capability it gives users of interacting with anyone in the world who also has Internet access. Because 40 to 70% of Internet users go online for health information, support, and services (Aspden & Katz, 2001; Brown, 1998; Mittman & Cain, 2001), the Internet has the potential to significantly alter the way health providers and patients interact with one another. The Internet and Provider-Patient Communication

Increasing Patient Participation. For the patient, the ability to gather information through Internet searches and e-mail transactions could facilitate greater participation in medical care by expanding the patient’s knowledge base and perhaps giving the patient a stronger sense of control in managing his or her health. In this respect, the Internet may hasten the transformation of the provider-patient relationship from one of paternalism to one of shared decision-making and partnership (Bauer, 2000; Winker et al., 2000). Although I am not aware of any study testing this hypothesis, anecdotal evidence abounds. For example, in my own discussions with physicians, many have stories about patients who come in with a “stack of Internet printouts” related to their health concerns (see also Rice, 2001). In their survey of 220 New Jersey physicians, Aspden, Katz, and Bemis (2001) reported that most of the physicians had recently interacted with patients who wanted to discuss information gathered from the Internet. On the other hand, the Internet may have little effect on patient participation in light of other factors operating within the interpersonal context of medical care. For example, regardless of how informed they are, many patients may be reluctant to discuss their concerns with doctors if they think they are wasting the doctor’s time, are afraid of what the treatment may entail, or think the health issue is not within the doctor’s expertise (Rice, 2001; Roter & Hall, 1993; Street, Cauthen, et al., 1995). In their national survey of over 2000 respondents, Aspden and Katz (2001) found that, of patients who had recently gone online to seek health information, only 37% said they discussed the information with their doctors. Clinicians’ Attitudes Toward Information on the Internet. Health care providers vary greatly in their attitudes toward patients who have collected health information from the Internet. Some clinicians are threatened by highly motivated patients who might

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use the Internet to gain more knowledge about a health topic than a typical doctor possesses (Beck, 2001). Many physicians and health care organizations also are greatly concerned about the quality of health information on the Internet (e.g., Winker et al., 2000) and fear that patients’ health beliefs may be influenced by quacks or that patients may be duped into buying unnecessary or even dangerous products. On the other hand, some health care providers see the Internet as having a desirable effect on their interactions with patients. Aspden et al. (2001) reported that one-third of the doctors in their survey believed their patients’ use of the Internet had led to more productive consultations whereas only 14% thought it had a negative influence. These findings are consistent with a larger survey of Norwegian doctors who felt that patients’ use of the Internet was either unobtrusive or had a positive impact on doctor-patient interactions (Hjortdahl, Nylenna, & Aasland, 1999). Virtual Consultations. The increasingly widespread use of e-mail for personal and business purposes is also creating opportunities for providers and patients to interact in cyberspace, either in addition to or in lieu of face-to-face meetings. Although many clinicians are cautious in their use of the technology, a growing number are e-mailing patients to answer questions, offer advice, schedule appointments, and follow up on treatment (Borowitz & Wyatt, 1998; Rice, 2001). The irony of e-mail interaction is that e-mail is both a limiting and an empowering medium. On the one hand, e-mail is restrictive in that the interactants can only type words and symbols to communicate. It also lacks the spontaneity of face-to-face interactions in that messages may not be responded to for minutes, hours, days, or weeks. However, e-mail may not have the sensory richness and immediacy of a face-to-face exchange, yet it does provide opportunities for providers and patients to communicate more frequently, more efficiently, and perhaps even more effectively because the participants need not share the same location or time frame to interact with one another (Mandl, Kohane, & Brandt, 1998). Moreover, when individuals perceive a need to communicate with others and maintain productive relationships, they will work to overcome the constraints of the medium in order to accomplish their objectives (Walther, 1996). Thus, in the absence of nonverbal behavior, e-mail users have developed a number of symbols (emoticons) to signal affect, such as , !, :>, and ;). What research has been conducted on provider-patient e-mail exchanges indicates that most e-mail contact is initiated by patients who, in the large majority of cases, are providing information about their health or are requesting information about a diagnosis or treatment (Borowitz & Wyatt, 1998; Widman & Tong, 1997). Interestingly, e-mail may contribute to more egalitarian interactions, as online patients tend to be more assertive than face-toface patients and are more willing to use e-mail to seek second opinions (Rice, 2001). How clinicians respond (if at all) to e-mail requests varies considerably. In Eysenbach and Diepgen’s (1998) study, doctors’ responses to a fictitious patient’s request for information on a dermatological condition ranged from a simple acknowledgment of the receipt of the message to advice to see a doctor to actual diagnoses. In short, the Internet is beginning to have a noticeable and potentially transforming effect on the ways providers and patients communicate with one another. However, it is still unclear whether virtual consultations will replace the traditional face-to-face consultation or will simply expand the opportunities for provider-patient interaction. The medium has considerable potential for enhancing quality of care, but there remain a number of medical issues (e.g., the kinds of health problems that can be appropriately managed via the Internet), legal concerns (e.g., confidentiality), social issues (e.g., access by economically

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disadvantaged groups), and attitudinal obstacles (e.g., resistance to change) that must be addressed (Mandl et al., 1998; Winker et al., 2000). THE POLITICAL-LEGAL CONTEXT

The political-legal context of the medical consultation encompasses legislative and judicial actions pertinent to the delivery of medical care. Of all the contexts identified in the ecological model, this is the one least studied. Some investigators have examined malpractice claims resulting from communicative action (or inaction) in medical consultations. For example, in Levinson, Roter, Mullooly, Dull, and Frankel’s (1997) study, physicians who had at least two previous malpractice claims conducted shorter visits, spent less time orienting patients to the visit, and used less partnership building than did physicians who had never had a claim against them. In an analysis of plaintiffs’ depositions, Beckman, Markakis, Suchman, and Frankel (1994) found that many complaints focused on communication-related issues, such as deserting the patient, delivering information poorly, and failing to understand the patient’s and family’s perspective. However, the question addressed here is this: in what way does the political-legal context of medical care affect providers’ and patients’ communication during the consultation? With respect to legislation, several states recently have passed a “patient bill of rights” and related laws aimed at ensuring that health care organizations, particularly managed care organizations, provide fair and necessary medical care (Lare, 1997). Typically, these laws require that physicians provide full disclosure of medical options for patients, obtain informed consent before performing medical procedures, discuss reasonable alternative treatments, and provide timely services to patients in need (Ellis, 1997). On the one hand, patient protection laws might encourage (or pressure) health care providers to give more information, offer a more thorough discussion of treatment options, and use more partnership building. However, because of the clinicians’ other goals and motivations (e.g., to stay on schedule), state laws may have little impact beyond causing the distribution of more printed educational materials and increasing paperwork as patients sign informed consent documents. Relatedly, a clinician’s experience, directly or indirectly, with malpractice claims could influence his or her attitudes toward patients. For example, many physicians worry about lawsuits, which may contribute to a general distrust of patients (Shapiro et al., 1989). Will the shadow of litigation pressure clinicians to adopt a more cautious and guarded style of communicating with patients? Or will they instead use more patient-centered communication (e.g., be more informative, acknowledge patients’ concerns, accommodate patient preferences), as advocated by experts who claim these behaviors can lower malpractice risks (Beckman et al., 1994; Garr & Marsh, 1986; Sommers, 1985)? In short, the political-legal context surrounding the medical encounter is an important yet essentially unstudied topic in health communication. More research will be needed before we have a clear understanding of how clinicians’ experiences with the courts and legislatures influence their conduct in the consultation and, conversely, whether patients’ perceptions of legal recourse and rights affect how they interact with health care providers. THE CULTURAL CONTEXT: RACE AND ETHNICITY

Broadly construed, culture may be defined as a system of beliefs, values, actions, and symbols shared by a group of people (Gudykunst, Ting-Toomey, & Chua, 1988), and any number of social groups (e.g., teenagers, ranchers, the homeless, organizations) may have

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a defining set of cultural beliefs and practices. Of interest here is culture as it relates to race and ethnicity. Specifically, in what ways do race and ethnicity influence communication in medical consultations? This is an important question in light of possible racial disparities in medical care (Schulman et al., 1999) and the growing belief that health care providers need training to improve their intercultural communication competence (Culhane-Pera, Reif, Egli, Baker, & Kassekert, 1997; Morales, Cunningham, Brown, Liu, & Hays, 1999). Ethnicity as a Predispositional Influence on Communication

Ethnicity may be related to providers’ and patients’ communicative predispositions in at least three ways. First, and perhaps most obvious, providers and patients from different ethnic backgrounds often speak different languages or dialects (e.g., Spanish vs. English), making effective communication difficult (Morales et al., 1999; Rothschild, 1998). However, even when both parties technically speak the same language, there may be other problems related to culture-specific usages, metaphors, idioms, and stories (GeistMartin, Ray, & Sharf, 2003). For example, “hearing voices” might be considered a sign of insanity by Anglos but interpreted as a religious experience by Mexican-Americans (Quesada, 1976). Hypertension may mean high blood pressure to upper middle-class America, but to many poor, urban dwellers “hyper-tension” is the name of an acute illness caused by nervousness and stress (Blumhagen, 1980). In short, people will use language in the way they understand it to convey meanings that may not be shared by those from different ethnic groups. Second, preferred styles of communicating may vary across different ethnic groups, particularly with respect to assertiveness and expressiveness. In their cultural model of factors affecting patients’ willingness to participate in medical consultations, Kim et al. (2000) proposed that people from individualistic cultures (e.g., Anglos in the United States, native Western and Northern Europeans) tend to have independent self-construals that promote more direct, assertive, and expressive communicative styles. However, people from collectivist cultures (e.g., Asians) have interdependent self-construals that lead to communicative styles characterized by indirectness, respect for authority, and accommodation to others. The authors hypothesized that patients from individualistic cultures would be more willing to actively participate in medical encounters than would patients from collectivist cultures. Kim et al. indeed found that Chinese (Hong Kong) respondents had less positive beliefs about patient participation, were more apprehensive about communicating with doctors, and expressed less willingness to be assertive during medical consultations than did respondents from the United States. Third, people from different ethnic backgrounds often have different explanatory (Kleinman, 1988) or personal (Hampson, Glasgow, & Toobert, 1990) models of health and illness. A person’s model of health represents the person’s understanding of health, including beliefs about the cause of an illness, degree of personal control over health, and best ways to manage health problems. Such a model is considered a predisposing influence on communication in medical consultations because it represents the person’s view of what issues are relevant to a particular health condition. With respect to ethnicity, Fadiman (1997) provides an in-depth account of the experience of Laotian immigrants seeking health care for their child within the American medical system. What the family perceived as spirits capturing the child’s soul, the doctors understood as epilepsy. What the doctors saw as the necessary diagnostic tests, the family saw as foolish uses of technology that have nothing to do with the soul. Clearly, ethnic differences in health beliefs pose

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challenges for quality of care as providers and patients try to agree on what health issues should be discussed and how should they be managed. It is important to emphasize, however, that it is the cultural beliefs and practices associated with ethnicity and not ethnicity per se that account for differences in communicative predispositions. Thus, one may find few differences in the communication styles of patients of Japanese, Mexican, or Irish descent if they have been acculturated into the values and behaviors of a particular culture. For example, in Kim et al.’s (2000) study, Hawaiians, arguably at the crossroads of East and West, scored in between the Americans and Chinese with respect to their willingness to actively participate in medical encounters. Attitudes and Stereotypes Related to Ethnicity

Yet another way the cultural context may have an impact on communication in a consultation is with respect to ethnicity-related attitudes and stereotypes possessed by clinicians and patients. For example, some physicians have less favorable views of African-American patients than European American patients, seeing them as less likeable or more apt to abuse alcohol or not comply with medical advice (Van Ryn & Burke, 2000). In a study where physicians reviewed a medical record of a patient pictured as White or Black and as male or female, Schulman et al. (1999) found that doctors were less likely to recommended cardiac catheterization for the Black patient. In a study of patients’ perceptions of care, Kaplan et al. (1995) reported that minority patients perceived their physicians as engaging in less partnership building than did White patients, a disparity that may be attenuated when patients visit doctors of their own race (Cooper-Patrick et al., 1999). Other studies, however, found modest or no differences in provider-patient communication strictly in relation to ethnicity (see, e.g., Roter et al., 1988). Moreover, some findings are contradictory. Whereas Thompson, Lawson, Croughan-Minihane, and Cooke (1999) found that non-Whites were more likely to have do-not-resuscitate orders, Garcia, Romano, Chan, Kass, and Robbins (2000) reported just the opposite. The ecological model can provide some insight into the inconsistency of these findings. As mentioned earlier, health care providers assume and are typically granted greater control of the consultation. Thus, their stereotypes, whether related to race or other factors (e.g., age, sex, social class), will to some extent shape their strategies, communicative routines, and expectations. If the patient is passive, then the consultation will likely unfold in ways consistent with the clinician’s initial perception of the patient, which may be based on a stereotype. However, if the patient actively participates in the consultation, or if he or she has other attributes that negate the stereotype (e.g., a college education), then the health care provider will likely modify his or her behavior in light of the patient’s communicative action and other personal characteristics (see, e.g., Street, 1992b). To switch perspectives, very little research has examined how the patient’s perceptions of the provider’s ethnicity affect communication in a consultation. Because many Blacks have a general distrust of the White-dominated health care system (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999), one might expect people of color to be less open and trusting of White clinicians than doctors of their own ethnicity. Also, some of my colleagues have shared stories about how U.S. veterans refused medical care because the doctor was “Asian.” In summary, ethnic differences between a provider and a patient can pose serious challenges to effective communication, especially if one holds negative attitudes toward the other’s ethnicity or if the two differ in their communicative preferences and expectations for the consultation. However, as highlighted in the ecological model, ethnicity is but one of

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many factors that make up the interpersonal context of the consultation. Thus, researchers interested in understanding the role of race in medical care should strive to identify and study those situations where ethnicity, as well as other features of culture, appears to play a significant role in the communication process. EXPANDING OUR RESEARCH AGENDA

Thus far, I have used the ecological model as a framework for reviewing extant research on provider-patient communication and for highlighting ways in which the communication in medical consultations is or can be influenced by the interpersonal, organizational, political, legal, and cultural contexts within which these encounters take place. In closing, I discuss some of the implications of this analysis for future research. Attention to Cognitive-Affective Influences

As theorists and researchers, we need to work harder on understanding how the communicative events of medical encounters are shaped by processes within the cognitiveaffective domain. Although we have some understanding of how provider-patient communication is related to sociodemographic factors (e.g., age, education) and to a partner’s communicative action, we know much less about how the interactants’ goals, expectations, and perceptions of their partners affect what unfolds during the consultation. Yet, it is through the cognitive-affective influences that broader contextual influences will often emerge. Although an in-depth discussion of measurement strategies for tapping into these processes is beyond the scope of this chapter, several investigators have taken steps toward assessing patients’ expectations for care (see, e.g., Kravitz, Callahan, Azari, Antonius, & Lewis, 1997), patients’ beliefs about physicians’ role responsibilities (Larson & Rootman, 1976, Street, Cauthen, et al., 1995), physicians’ attitudes toward patients (Harris, Rich, & Crowson, 1985; Levinson, Stiles, Inui, & Engle, 1993), patients’ personal models of health (Hampson et al., 1990), and patients’ emotional states (e.g., anxiety; Gerdes & Guidi, 1987). However, few studies have linked these constructs to patterns of communication in medical consultations. In addition, hardly any research has explored the communicative consequences of the provider’s and patient’s goals for the encounter, the patient’s attitudes toward the provider’s attributes (e.g., age, ethnicity, medical specialty), the degree of trust in the provider-patient relationship, and the provider’s emotional state (e.g., fatigue, frustration) during the encounter. We must better our understanding of these processes if we are to answer the questions raised at the outset of this chapter. Use of Multiple Measures and Analytical Frameworks

Because communication is a complex phenomenon that can be studied from multiple perspectives, health communication researchers could benefit from using multiple modes of assessment and analytical frameworks (Roter & Frankel, 1992; Street, 1992a). Qualitative versus Quantitative Analyses. Traditionally, research on communication in medical consultations has fallen within two methodological camps. One camp examines statistical relationships between communication behavior, variables affecting the communication process, and outcomes following the interaction. Quantitative analyses allow investigators to discover trends within a sample or a population of medical

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encounters and determine what variables account for particular patterns of interaction (e.g., under what conditions are doctors more informative?) and outcomes (e.g., what patterns of communication predict a patient’s commitment to treatment?). The other camp takes a more qualitative approach, conducting discourse analysis, ethnographies, and interviews of individuals and focus groups. As Waitzkin (1991) has noted, qualitative analyses provide valuable insight into the complexities of discourse, the nuances of meaning, the human experience of health, and the ways in which social, political, and historical contexts impinge upon parts of the medical interaction. Given the advantages and limitations of each approach, a number of researchers have advocated using multiple methods of data analysis (Roter & Frankel, 1992). For example, in my own work, I have discovered that selected segments of medical discourse not only serve as exemplars to help contextualize statistically significant relationships (e.g., between partnership building and patient participation), but can be used to account for the negative cases, that is, where the predicted relationship did not emerge (Street, Gold, & McDowell, 1995; Street & Millay, 2001). Perceptual versus Behavioral Measures. Studies of health care providerpatient communication typically rely on either perceptual or behavioral measures of communication. Although measures of patients’ perceptions of clinicians’ communication (see, e.g., Buller & Buller, 1987; Lerman et al., 1990; Street, 1991) and the much less studied measures of clinicians’ perceptions of patients are easy to score and provide a subjective assessment of communication, they do not typically identify what behaviors created the perception and may be susceptible to perceptual biases (e.g., the halo effect). Behavioral measures, on the other hand, provide detailed information on the frequency and duration of certain communicative acts but often are laborious to gather and fail to fully capture the interpretive significance of different messages. Because there may be little correspondence between a behavioral measure (e.g., amount of information given) and its perceptual analogue (e.g., perceived informativeness) (Street, 1992a), researchers could employ both perceptual and behavioral measures or use measurement techniques that combine both methods (e.g., stimulated recall; see Frankel & Beckman, 1989) to capture both the subjective and objective elements of the communication process. Adopting a Contextual Approach to the Medical Consultation

The ecological model presented in this chapter highlights the importance of looking at a medical encounter not as an isolated event but as embedded within a number of contexts. Hence, not only should researchers examine how context impinges upon interpersonal processes affecting communicative action, they can also examine various health-related interactions that occur within a particular context. For example, health care consumers have considerably more communicative experiences within the health care system than simply talking to doctors. The telephone call to set up on appointment, talking to the triage nurse about whether a concern warrants medical attention, the encounter at the receptionist desk, the waiting time, and the follow-up (if any) to the consultation (e.g., reporting screening results, patient education) are all “peri-consultation” interactions that can affect a patient’s utilization of services, satisfaction with care, commitment to treatment, and use of alternative medicine, among other things. Moreover, what I have described so far could be the interactions associated with one trip to the clinic. Because most consultations deal with the management of chronic conditions, we also need to investigate the consequences of patients’ experiences as they make multiple passes through the health care system.

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In closing, the encounters people have with health care providers—whether doctors, psychologists, shamans, or curenderas—form an important part of human experience. Moreover, these encounters have direct implications for both subjective and objective dimensions of health and well-being. Thus, my appeal is not to do less with the providerpatient relationship; it is to expand our thinking in order to ground our analysis in the setting in which these encounters have relevance and meaning. The contextual approach advocated here presents a viable perspective for doing so. REFERENCES Agne, R. R., Thompson, T. L., & Cusella, L. P. (2000). Stigma in the line of face: Self-disclosure of patients’ HIV status to health care providers. Journal of Applied Communication, 28, 235–261. Aspden, P., & Katz, J. E. (2001). Assessments of quality of health care information and referrals to physicians: A nationwide study. In R. E. Rice & J. E. Katz (Eds.), The Internet and health communication: Experiences and expectations (pp. 99–106). Thousand Oaks, CA: Sage. Aspden, P., Katz, J. E., & Bemis, A. E. (2001). Use of the Internet for professional purposes. In R. E. Rice & J. E. Katz (eds.), The Internet and health communication: Experiences and expectations (pp. 107–120). Thousand Oaks, CA: Sage. Bain, D. J. (1979). The content of physician/patient communication in family practice. Journal of Family Practice, 8, 745–753. Bauer, C. (2000). Limiting factors on the transformative powers of e-mail in patient-physician relationships: A critical analysis. Health Communication, 12, 239–259. Beck, C. S. (2001). Communicating for better health: A guide through medical mazes. Boston: Allyn & Bacon. Beckman, H. B., Markakis, K. M., Suchman, A. L., & Frankel, R. M. (1994). The doctorpatient relationship and malpractice: Lessons from plaintiff depositions. Archives of Internal Medicine, 154, 1365–1370. Beisecker, A. E., & Beisecker, T. D. (1990). Patient information-seeking behaviors when communicating with doctors. Medical Care, 28, 19–28. Bernzweig, J., Takayama, J. I., Phibbs, C., Lewis, C., & Pantell, R. H. (1997). Gender differences in physician-patient communication. Archives of Pediatrics and Adolescent Medicine, 151, 586–591. Bertakis, K. D. (1977). The communication of information from physician to patient: A method of increasing patient retention and satisfaction. Journal of Family Practice, 5, 217– 222. Bertakis, K. D., Callahan, E. J., Helms, L. J., Azari, R., & Robbins, J. A. (1995). The effect of patient health status on physician practice style. Family Medicine, 25, 530–535. Bertakis, K. D., Helms, L. J., Callahan, E. J., Azari, R., & Robbins, J. A. (1995). The influence of gender on physician practice style. Medical Care, 33, 407–416. Birenbaum, A. (1997). Managed care: Made in America. Westport, CT: Praeger. Blumhagen, D. (1980). Hyper-tension: A folk illness with a medical name. Culture, Medicine, and Psychiatry, 4, 197–224. Borowitz, S. M., & Wyatt, J. C. (1998). The origin, content, and workload of e-mail consultations. Journal of the American Medical Association, 280, 1321–1324. Brown, M. S. (1998). Healthcare information seekers aren’t typical Internet users. Medicine on the Net, 4, 17–18. Buller, M. K., & Buller, D. B. (1987). Physician communication style and health care satisfaction. Journal of Health and Social Behavior, 28, 375–387.

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II Provider-Patient Interaction Issues Teresa L. Thompson

Originally, provider-patient interaction was the predominant area of research in the field of health communication. As editor of the journal Health Communication, for which I began accepting submissions in 1987, I found that almost all of the pieces I received in the early years focused on some aspect of the relationship between communication and health care delivery (i.e., the provision of services by health professionals). This emphasis has changed over the years, and researchers have broadened their perspective considerably, but the provider-patient interaction still remains a key area of study. The chapters in this part of the book reflect that emphasis. They focus mostly on what happens when a patient and a health care provider interact with each other. They review and critique the relevant research as well as provide practical suggestions for patients and providers and intriguing suggestions for future research. In essence, they set a research agenda for the study of provider-patient interaction for the 21st century. For a more general overview of provider-patient interaction, the reader is referred to Thompson and Parrott (2002). The first chapter in this part discusses communicative skill development. This topic, for the most part, has been examined by experts in the fields of communication, medicine, nursing, and public health, and its study has yielded rich and interesting insights into the health communication process. In fact, the best work on communicative skill development is theoretically grounded and provides new theoretical insights but also has practical applications. No only does it assess the communicative skills that are most important during provider-patient interaction, it tries to determine ways in which those skills can be improved. Although most of the research in this area has focused on the communicative skills of health care providers, the authors of this chapter, Don Cegala and Stefne Broz, also review studies that have examined the communicative skills of patients as they interact with their providers. Given the dyadic nature of all communication, focusing on either the provider or the patient alone would provide an incomplete picture of provider-patient interaction.

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To study provider-patient interaction, researchers must be familiar with the various available methods. Debra Roter and Kelly McNeilis review these methods in Chapter 6, appropriately titled “Methods for Studying Provider-Patient Interaction.” This chapter will be of great value to researchers interested in this area of study, as it thoroughly outlines the appropriate research techniques. The early portion describes quantitative methods, especially observational, interaction analysis techniques. It discusses the contexts in which these methods have been used and the data indicating their reliability and validity. It presents enough information to allow researchers to assess the appropriateness of a particular research method for a particular study. The chapter then describes qualitative or discourse analytic approaches that have yielded important insights into how health care providers and patients interact and thus deserve serious consideration by future researchers. In Chapter 7, Judith Belle-Brown, Moira Stewart, and Bridget Ryan examine the impact of provider-patient interaction on various outcomes. They focus on outcomes relevant to both patients and providers, including satisfaction with health care delivery and communication, patient compliance with health care regimens, medical malpractice suits, and health outcomes. The impact of health communication on health outcomes is perhaps the most intriguing topic within the field, although some have argued against our ability to link the two (Stiles, 1989). There are also others who would argue that the impact of health communication on medical malpractice suits is equally intriguing. In any case, there is little doubt of its importance. Another less studied but highly significant outcome is also covered in the chapter—time spent in the provider-patient interaction. The authors discuss research that has examined how different approaches to communication differentially impact this variable. There are several key variables of the communicative process that have not been specifically addressed within this handbook because of their generality. Chapter 4, in Part I, reviewed these variables, but there is one that is of such direct relevance to providerpatient interaction that it was deemed necessary to include a chapter on it—the issue of disclosure. Chapter 8, by Cathy Gilloti, is a fascinating and theoretically grounded treatise on this topic, with an emphasis on how disclosure impacts health communication, health care delivery, and health decision-making. The chapter reviews research on such issues as the disclosure of bad news, personal disclosure between patients and care providers, and informed consent. In the final chapter of this section, Jon Nussbaum, Sandra Ragan, and Bryan Whaley bring the discussion of health communication to a more sophisticated level by looking at some relevant patient characteristics that influence provider-patient interaction. This chapter focuses upon how provider-patient interaction differs when the patient is older, female, or a child. The chapter begins by considering elderly patients, a topic that is particularly relevant to the study of health communication given the graying of the population and the fact that elderly people typically need to seek out health care more frequently than do younger people. Elderly people also make different assumptions about health care delivery, and different assumptions are made about them. These factors and others cause health communication between older patients and their care providers to be different from that between younger patients and their care providers. Just as gender is a variable ofttimes neglected in medical research (Gabbard-Alley, 1995), it is typically not adequately studied in the field of health communication. This is surprising in light of our knowledge that gender impacts many communicative processes, that women experience somewhat different health problems than do men, and that women are more likely than men to seek out health care for themselves and for other family members. Research indicates that the dyadic communicative process operates differently

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when either the patient or the provider is a woman (or both are) than it does when both are men. Chapter 9 examines this intriguing fact. The chapter ends with a discussion of the developmental issues that become relevant when children are the recipients of health care. Developmental issues have in general been inadequately examined by researchers in communication, including health communication. What research does exist is reviewed in the final section of Chapter 9. The theoretically grounded discussion provides practical suggestions for communicating with children and promising research directions for those interested in further studying this important topic. Although the chapters in this section focus on different aspects of provider-patient interaction, there are some common themes. The overriding theme is that the providerpatient interaction is essential to health and the health care delivery process. Until recently, health care providers were taught to focus on medical issues only. Paying any attention to interpersonal issues was seen as a concession to salesmanship, and communicative skills were assumed to be intuitive rather than acquired (Korsch, 1989). The research surveyed in this section, however, makes clear that interpersonal issues play a central role in the health care delivery process. After all, the accuracy of a diagnosis, the understanding of a health problem, the likelihood of compliance with treatment regimens, and the probability of recovery are all influenced by the personal interaction between the provider and the patient. These chapters, then, transform the traditional medical model into a much more sophisticated conceptualization combining biological (physiological) and psychosocial factors. In doing so, they highlight the complexity of medical care and the health care delivery process. This complexity is apparent in the multitudinous variables that influence providerpatient interaction as well as in the sophistication of the methods that are required to assess such interaction and its effects. This complexity will also require future researchers to build upon the methods and go beyond the knowledge presented within these chapters. The remainder of this handbook makes apparent that health communication affects and is affected by many variables and processes beyond the provider-patient interaction. Nonetheless, the chapters in this section reveal that health communication processes cannot be understand without a foundational understanding of communication between health care providers and their patients. Communication impacts both health care delivery and health itself. REFERENCES Gabbard-Alley, A. S. (1995). Health communication and gender: A review and critique. Health Communication, 7, 35–54. Korsch, B. M. (1989). Current issues in communication research. Health Communication, 1, 5–9. Stiles, W. B. (1989). Evaluating medical interview process components: Null correlations with outcomes may be misleading. Medical Care, 27, 212–220. Thompson, T. L., & Parrott, R. (2002). Interpersonal communication in health care. In J. D. Daly & M. L. Knapp (Eds.), Handbook of interpersonal communication (pp. 680–725). Thousand Oaks, CA: Sage.

5 Provider and Patient Communication Skills Training Donald J. Cegala and Stefne Lenzmeier Broz Ohio State University

Research into various aspects of physician-patient communication has been conducted for approximately 30 years, and each year new studies are added to this vast and growing literature (Ong, DeHaes, Hoos, & Lammes, 1995; Pendleton, 1982; Roter, 1989; Thompson, 1994). A subset of this research is devoted to assessing the effects of interventions designed to train providers and patients in communication skills. For the most part, the impetuous for training providers is grounded in the desire to move away from a paternalistic biomedical model of provider-patient communication to a more patient centered biopsychosocial model (Emanuel & Emanuel, 1992). At the same time, patient communication skills training has been stimulated by research suggesting that patients’ active participation in their health care leads to greater satisfaction, increased compliance, and better health outcomes (Kaplan, Greenfield, & Ware, 1989; Leopold, Cooper, & Clancy, 1996). PROVIDER COMMUNICATION SKILLS TRAINING Database Selection

We conducted a Medline search of literature published from 1990 to the present using the keywords communication, skills, training, medical education, instruction, physician, doctor, and patient relations. Additionally, we examined relevant studies from the reference lists of the literature identified by the Medline search. We limited the time span of the database to focus on more recently published research and to make the database more manageable. Only complete studies on provider communication skills training were included here; review pieces, position papers, commentaries, letters, and method development pieces were consulted but are not included.

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We initially intended to examine communication skills training for several types of providers, but due to space limitations ultimately we ended up including only physicians. In particular, we focused on the training of practicing physicians, residents, or other postgraduate providers, thus excluding communication skills training for undergraduates in medicine, nursing, and related health professions. The relevant literature for just medical students and nurses, for example, is quite extensive (Hargie, Dickson, Boohan, & Hughes, 1998; Joos, Hickam, Gordon, & Baker, 1996; Kruijver, Kerkstra, Bensing, & van de Wiel, 2000; Kruijver, Kerkstra, Francke, Bensing, & van de Wiel, 2000; Makoul, 1999). Even within these limitations and exclusions, we cannot claim to have included all of the research on provider communication skills training that was published between 1990 and the present. However, we are confident that what is included is a good representation of what has been done in the area of communication skills training for practicing physicians. Upon reading 26 studies on provider communication skills training and related research, we were immediately struck by the lack of overall coherence and focus in the literature. For example, there appears to be little consistency in what is considered a communication skill, and there are a variety of ways in which communication is assessed across studies. Moreover, little effort has been made to provide an overarching framework for organizing provider communication skills, although some scholars have suggested a classification distinguishing between information exchange and relational development (e.g., SansonFisher & Cockburn, 1997), and others have organized skills according to the stage or component of the medical interview (e.g., Silverman, Kurtz, & Draper, 1998). However, scholars who conduct research into provider communication skills typically do not frame their work along either of these lines or offer an explicit alternative structuring principle. To make matters worse, very little information is typically reported about what specific communication skills were taught, and often when skills are reported, there is incongruity between the stated objectives of the intervention and the instrument used to assess training effects. Overall, making sense of the literature on provider communication skills training and critiquing it beyond issues of method and results is by no means easy or straightforward. Table 5.1 summarizes key aspects of each study we examined. It should be noted that in constructing Table 5.1 we extracted aspects of the studies that were particularly relevant to communication skill issues. There may be other aspects of these studies worth considering that are not addressed here. Many of the studies listed in the table were also reviewed by Hulsman, Ros, Winnubst, and Bensing (1999), and the interested reader is recommended to access their report. Due to space limitations, we have opted not to discuss the details of the studies but rather to report them in table format for the reader to examine. We will limit our comments to observations about general trends and needed areas of research. Overview of Provider Training Research

Less than 30% of the studies reported in Table 5.1 had a design adequate for assessing the effects of training interventions (i.e., randomized control with pre- and posttest). Most of the studies used a pre- and postassessment to examine a single group of participants all of whom were exposed to a communication skills training intervention. Additionally, in most of these studies the participants were either members of a convenience sample (e.g., residents in a rotation) or volunteers (e.g., practicing physicians who agreed to participate). Needed is more research that employs a randomized control group with preand posttesting.

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TABLE 5.1

Design and Sample a

RC; E n = 24; Cn = 24; primary care residents.

RC; E n = 20; Cn = 14; pediatric residents.

NRC; P-P; E n = 28; Cn = 20; primary care residents.

P-P; single group; 9 GPs.

Source

Roter et al., 1990

Lewis et al., 1991

Smith et al., 1991

Bowman et al., 1992

Focus: psychosocial, data gathering, & interview organization skills. Specific skills: ?

Skillsc

Focus: promote children’s participation in the medical interview. Specific skills: building rapport w/children; checking on children’s understanding of medical information; handling incorrect or inadequate information provision from children; agenda setting with parent and child; facilitating expression of concerns. 4-week rotation in psychosocial Focus: psychosocial skills. Specific skills: ? medicine; partially learner-determined objectives; lecture; discussion; demonstrations/ modeling; role-play w/feedback; supervised interviews w/RPs. 18 weekly 2-hr. sessions; small Focus: psychiatric interviewing skills. group, role-play w/feedback. Specific skills: ? facilitation; checking and clarifying comments, empathic statements, open Qs, establishing eye contact, seeking patient’s views, establishing realistic goals.

Readings; group discussion; role-play; videotaped practice w/feedback with SPs; live interviews w/feedback with RPs; 1 month psychosocial rotation. Instructional videotape; readings; postinterview self-assessments; 1 hr. and 15 min.

Interventionb

Es improved in knowledge, attitudes, and skills.

E physicians addressed more recommendations to child or child and parent.

Es had more open Qs, fewer leading Qs, SPs rated as having better com. skills.

Communication-Specific Results d

continued

Immediate: more open Analysis of video w/RP Qs, less closed Qs; immediately after more social Qs, less intervention and after 2 yrs. psychological Qs; more checking out. Long-term: maintained

Participants’ self-assessment of knowledge, attitudes, and skills associated with psychosocial medicine.

Analysis of video w/RP; self-reported satisfaction.

Analysis of video w/SP, SP report of physician, patient self-reports, physician chart notes.

Assessment

Descriptive Summary of Studies of Health Care Provider Communication Skills Training

98

P-P; single group; 18 GP residents.

RC; P-P; Short: E n = 15; Cn = 15; Long: E n = 20; no C; primary care physicians.

Posttest only, single group; 78 senior registrars, senior house officers, nurses, and others. RC; P-P; E n = 15; Cn = 11 primary care residents.

Kaaya et al., 1992

Levinson & Roter, 1993

Faulkner et al., 1995

Smith, Mettler, Stoffelmayr, et al., 1995

Design and Sample a

Source

Skillsc

Focus: psychological component of 8-week rotation in psychiatry; primary care. instructional video; role-play; group discussion; videotaped Specific skills: taking full history of pain; explore health beliefs; exploring interviews w/ RPs and family and social factors; feedback. acknowledging patient’s symptoms; summarizing physical findings; reframing by connecting psychological to life events. Focus: patient-centered interviewing. Short: 4 hrs.; lecture and Specific skills: eliciting patient’s discussion; Long: 2.5 days, concerns; use more open Qs and less learner-determined closed Qs; giving information about objectives; practice illness and therapy; engaging in interviews w/RPs and psychosocial discussion; asking feedback. patient’s opinion; more listening, less talking; summarizing what patient says; allowing patient to tell story without interruption. Focus: giving distressing information. 2-day program; recorded Specific skills: ? role-play w/SP; group discussion; learner-determined objectives. 4-week rotation in Focus: psychosocial skills psychosocial; partially Specific skills: ? learner-determined objectives; lecture/

Interventionb

TABLE 5.1 (Continued)

more open Qs, less closed Qs; increased social over psychological Qs and checking out. Increase in Qs about pain site; more exploration of health beliefs; more acknowledging of patient symptoms.

Communication-Specific Results d

Residents’ self-reports of confidence in and knowledge of psychosocial matters.

Analysis of recorded role-play w/SP.

E residents scored higher on all measures.

Training effects on 3/6 skills.

No effects from short Analysis of recorded visits intervention; Long: Es with 10 RPs (5 pre, 5 post); used more open Qs; global affect ratings on asked for opinion anger, anxiety, dominance, more; lower negative friendliness, affect ratings. responsiveness, interest.

Analysis of videotaped role-plays w/another trainee.

Assessment

99

4.5 hrs. over three 90-minute sessions; videotaped role-play w/SP.

RC; P-P; E n = 22; Cn = 20; primary care physicians and residents.

P-P; single group; 169 physicians, nurses, social workers, and others in cancer care.

Joos et al., 1996

Maguire, Booth et al., 1996

3- or 5-day workshop; learner-determined objectives; instructional videos; role play w/feedback.

2 interventions (see focus); 8 hrs. in two 4-hr. sessions 1 week apart; lecture, roundtable discussion; practice w/SP; role-play based on segments of interviews w/RPs.

—

RC; P-P; EHn = 22; PDn = 23; Cn = 24; primary care physicians.

Smith, Lyles, Mettler, Marshall, et al., 1995e Roter et al., 1995

discussion; live demonstration/modeling; role-play; supervised interviewing w/RPs. —

Focus: emotion handling skills (EH); problem-defining skills (PD). Specific skills: EH: asking about feelings; listening more, talking less; following up on signs of emotional stress; complimenting effort; legitimizing patients’ views/feelings; expressing empathy; expressing partnership or support; providing reassurance. PD: resisting immediate follow-up of first concern; asking “anything else?”; negotiating time; starting with open Qs; facilitating utterances; assessing psychosocial aspects; probing for patients’ understanding; expressing concern; clarifying patients’ expectations. Focus: physicians’ awareness of patients’ concerns. Specific skills: identifying and eliciting patient’s agenda; negotiating a realistic interview agenda; identifying patient’s attributions/expectations; relationship-building skills. Focus: skills promoting and inhibiting patient disclosure of information. Specific skills: promoting skills: open Qs; Qs w/psychological focus;

—

Analysis of interviews w/SPs; patients’ assessment of desired concerns/services; patients’ perceptions of information received; patient satisfaction; patient compliance. Analysis of interviews w/SPs immediately after intervention and 6 months later.

Analysis of interviews w/RPs and one SP; physicians’ recognition of psychosocial problems and emotional distress; clinical proficiency; patients’ reported reduction in emotional stress.

RPs’ assessment of residents’ skills; patient satisfaction.

continued

Increase in 3/6 promoting skills immediately and 6 months later.; decrease in inhibiting

Es had greater proportion of visits in which all concerns were met; Es’ patients perceived greater information giving.

EHs used more EH utterances; PDs used PD utterances; PDs recognized more psychosocial and emotional behaviors in patients; PDs proficient; PDs’ patients had more reduction in stress.

Es rated higher on confidence; Es’ patients more satisified.

100

P-P; single group; 206 physicians, nurses, social workers, psychologists, and others in cancer care.

P-P; single group; 24 pediatric residents.

P-P; single group; 9 oncologists, 1 psychiatrist, 3 fellows.

P-P; 178 oncologists.

NRC; P-P; E n = 35; Cn = 33 primary care physicians. RC; P-P; E n = 19; Cn = 23; internal medicine residents.

Maguire, Faulkner, et al., 1996

Morgan & Winter, 1996

Baile et al., 1997

Fallowfield et al., 1998

Greco et al., 1998

Langewitz et al., 1998

Design and Sample a

Source

1.5- or 3-day workshop; readings; instructional video; learner-determined objectives; role-play w/SPs and feedback. .5 day per week over 13 weeks or 5-hr. workshop; discussion in triads. 1.5-day seminar; lecture; demonstration interviews w/SPs; role-play; progress

4.5 hrs. in 3 sessions; lecture; panel discussion; live demonstration, role-play; group discussion. 3-day workshop; lecture; instructional videotape; readings; practice interviews w/SP and feedback; personal awareness exercise; learner-determined objectives.

3- or 5-day workshop; learner-determined objectives; instructional videos; role-play.

Interventionb

Focus: patient-centered interviewing Specific skills: showing empathy in greeting; acknowledging initial

Focus: patient-centered interviewing Specific skills: ?

Focus: skills for stressful interactions. Specific skills: ? initiating discussion of patient’s concerns; accessing patient’s knowledge of illness; asking Qs to elicit illness concerns; encouraging elaboration of illness concerns; summarizing illness concerns; moving patient to discuss other concerns; managing own feelings. Focus: breaking bad news Specific skills: ?

Focus: disclosure of psychological problems. Specific skills: open Qs; Qs w/psychological focus; clarifying psychological focus; screening Qs; educated guesses. Focus: delivering bad news. Specific skills: ?

clarifying psychological focus; educated guesses; empathy.

Skillsc

TABLE 5.1 (Continued)

Communication-Specific Results d

Residents evaluated program highly; 2/5 residents showed subtle improvement. Improvement on 6/10 skills.

Improvement on 7/12 items. Es better on 10/14 skills.

RP assessment of physicians’ communication. Analysis of interview w/SP; global ratings.

Analysis of interviews w/SPs; Improvement on self-confidence ratings. participants’ self-rated confidence.

Participants’ self-appraisal.

Analysis of interviews w/SP; residents’ evaluation of training program.

behaviors in 3/6 immediately and 6 months later. Analysis of interviews w/SPs. Increase in use of Qs w/psychological focus; clarification of psychological concerns; open Qs.

Assessment

101

Same as Smith et al., 1995

RC; P-P; E n = 31; Cn = 30; primary care residents.

P-P; single group; 15 oncologists, 2 fellows.

Smith et al., 1998

Baile et al., 1999

2 5-hr. workshops 6 weeks apart; learner-determined objectives; lecture; readings; instructional video; role-play w/feedback.

8 hrs. over 2 days; lecture; role-play.

NRC; P-P; E n = 10; Cn = 8; primary care physicians.

Roter et al., 1998

assessment meetings; one-on-one sessions during clinical work with RPs.

complaints; taking up emotions; clarifying consultation reasons; summarizing patient’s statement of concern; announcing history-taking phase; structuring consultation; sharing evaluation; conveying detailed information as desired by patient. Focus: patient-centered interviewing. Specific skills: information giving in both biomedical and psychosocial domains; open Qs; expressing concern, empathy, reassurance; positive exchanges; using facilitators, interpretations, and signals of interest. Focus: patient-centered interviewing. Specific skills: encouraging patient responses; allowing the patient to talk; responding to emotions; not completely pursuing biomedical data initially; including psychosocial data initially; not dominating the interview; building rapport; following up on patient-initiated topics, effectively managing the interview. Additional skills w/SPs: providing information; motivating behavioral change; supporting patients’ achievement in attaining health goals; managing somatizing patients. Focus: breaking bad news (BBN) and managing difficult patients (MDP). Specific skills: (BBN) creating an appropriate setting; eliciting patient’s perception of the problem; assessing patient’s desire for information; giving information in small chunks; checking Improvement on 18/21 BBN skills; improvement on 4/15 MDP skills.

Participants’ self-rated self-efficacy.

continued

Es greater on knowledge, attitudes; greater on 2/10 data-gathering skills w/RPs; 10/10 data-gathering skills w/SPs; 10/14 informing and motivating skills; 8/14 managing somatization skills.

Es used more open Qs and facilitators; rated as expressing more interest and friendliness.

Residents’ knowledge; attitudes, and commitment to psychosocial medicine; patient satisfaction and self-reported physical functioning; analysis of interviews w/SP and RPs.

Analysis of interviews w/RPs; patient satisfaction; global affective tone ratings.

102

Design and Sample a

RC; P-P; E n = 32; Cn = 29; primary care physicians, nurse practitioners, others.

P-P; single group; 85 primary care physicians.

P-P; single group; 911 physicians over 5 yrs.

Source

Brown et al., 1999

Costanza et al., 1999

Stein & Kwan, 1999

5-hr. seminar; lecture; instructional video; live demonstration; readings; role-play w/SP. 1-day workshop; lecture/ discussion; instructional video; role-play.

2 4-hr. workshops; readings; lecture; role-play; taped office visits w/RPs.

Interventionb

Es improvement on self-assessments (no C group comparison).

No improvement in communication skills; improvement in 1/3 stage counseling skills. Improvement on all 18 self-assessment skills.

SP assessment of physicians’ skills.

Communication-Specific Results d

Patients’ judgments of physicians’ skills; 1-item patient satisfaction measure; physicians’ self-assessments.

Assessment

Focus: skills for enhancing effectiveness Self-assessments of interviewing skills and efficiency of interviews (EE) and immediately after and handling difficult patients (DP). 3 months after intervention. Specific skills: (EE) using open Qs; asking if there is “anything else;” asking about psychosocial issues; exploring barriers to adherence; using own feelings as diagnostic information; negotiating and setting agendas; guiding effective information flow. (DP) determining which behaviors are difficult and why; stating impasse or

patient’s understanding frequently; avoiding medical jargon; empathizing with and exploring patient’s emotions; providing a summary; negotiating a treatment strategy. (MDP) ? Focus: skills for building effective relationships with patients (ER); negotiation skills, especially for disagreement situations (NS). Specific skills: (ER) listening actively; communicating concern, understanding, respect; responding to patient’s feelings. (NS) ? Focus: counseling intervention (mammography screening). Specific skills: ?

Skillsc

TABLE 5.1 (Continued)

103

P-only, single group; pediatricians, family physicians, gynecologists. ? groups of 20–30.

Hardoff & Schonmann, 2001

30- to 45-minute session; role-play w/SPs and feedback.

1-day workshop in 2 sessions; role-play w/SPs and feedback from SPs.

Improvement in 1/5 skill categories; improvement in overall score across all 5 categories.

Self-reported using of learned principles.

Postinterview evaluation by SPs.

Self-report 1 month after intervention.

b SP

a RC

= randomized control; NRC = nonrandomized control; P-P = pre- and posttest; P-only = posttest only; E = experimental (intervention) group; C = control group. = simulated (or standardized) patient; RP = real patient; role-play alone = other participant or instructor assumed a role, as opposed to a SP or RP. c Qs = questions; ? alone = insufficient information about skills or no report of skills; ? followed by skills = uncertainty about skills listed, derived from assessment instrument rather than a description of skills. d Improvements, etc., reflect statistically significant results involving E and C or pre- and posttest comparisons. Assessments not mentioned were nonsignificant or not specifically communication related. e This is the same study as Smith et al., 1995 reported above, except for a different assessment.

P-P, single group; 7 pediatric intensive care fellows.

Vaidya et al., 1999

dilemma; expressing common goals; using empathy to diffuse strong emotions. Focus: breaking bad news. Specific skills: ? allowing parents to talk/ask Qs; expressing sympathy and compassion; avoiding medical jargon; using appropriate body language; asking about parents’ understanding; discussing assessment and prognosis; discussing rationale and approach to therapy; leaving room for hope; asking psychosocial Qs; relieving parents of blame/guilt; preparing parents; greeting parents warmly; letting parents tell their story; showing interest; encouraging parents to ask Qs. Focus: improving skills in communicating with adolescants. Specific skills: careful listening; a nonjudgmental approach; assuring confidentiality; others?

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Regarding the samples, it is no surprise that the vast majority of studies (80%) involved primary care physicians (i.e., family medicine physicians, general internists, or pediatricians), as these physicians have consistently been the focus of most of the published research on physician-patient communication and have traditionally been the most responsive to and concerned about communication matters. We were surprised and encouraged to see communication skills training studies that used cancer providers (about 20% of the studies examined here). There is some indication that oncologists and other health professionals who deal with cancer patients do not receive adequate training in communicating with patients, particularly with respect to “breaking bad news” and handling strong, emotionally-charged interview contexts (Baile et al., 1999). Future research on communication skills training should encompass studies using various medical specialists, including surgeons. Overall, the researchers employed a wide variety of instructional strategies, but the emphasis was appropriately placed on strategies that involved modeling (e.g., instructional videos) and practice (e.g., role-playing) with feedback. These are the instructional strategies that are most likely to promote the learning of complex behaviors, such as communication skills, as well as increase the efficacy of newly acquired skills (Bandura, 1997). What is not clear from most of the literature, however, is the extent to which communication skills are retained beyond immediate assessment following an intervention. Some studies assessed long-term retention of skills, ranging from 3 months to 2 years (Bowman, Goldberg, Millar, Gask, & McGrath, 1992; Maguire, Booth, Elliott, & Jones, 1996; Stein & Kwan, 1999), with reasonably positive results. However, more research is needed to examine the long-range effects of communication skills training interventions. Perhaps even more important than assessment of the long-term effects of training is better alignment between the communication skills that are taught and the instruments and procedures for assessing the learners’ performance. Several of the studies examined here had apparent or blatant mismatching of skills and assessment instruments (Baile et al., 1999; Bowman et al., 1992; Brown, Boles, Mullooly, & Levinson, 1999; Greco, Francis, Buckley, Brownlea, & McGovern, 1998; Kaaya, Goldberg, & Gask, 1992; Roter, Cole, Kern, Barker, & Grayson, 1990; Smith et al., 1995; Stein & Kwan, 1999; Vaidya, Greenberg, Patel, Strauss, & Pollack, 1999). Consequently, some researchers reported significant effects on communication skills that were not directly taught or reported nonsignificant results for skills that were not actually assessed. Much more care is needed in specifying communication skills and locating or developing assessment instruments that accurately reflect the learners’ skills. Given the extent of the misalignment in the current training literature, it is sometimes difficult to place much confidence in the obtained results. In a real sense, there are more studies of provider communication skills training than there are available results with which to accurately judge the effectiveness of such training. Despite these potential problems, overall there is a good deal of support for the hypothesis that provider communication skills training is indeed effective (see Table 5.1). At the same time, however, it must be recognized that about 30% of the training studies relied solely or primarily on the participants’ self-perceptions of communication skills to assess the effects of training. Although self-perceptions of communication competence are related to the evaluation of communicative performance, they cannot be used confidently as the primary or sole means for assessing the effects of communication skills training. Finally, very few studies have examined the impact of provider communication skills training on patients’ health-related outcomes (Joos et al., 1996; Roter et al., 1995). Although it is important to establish that skills training results in significant improvement in providers’ communication, the ultimate goal of such training is to enhance the quality

5. COMMUNICATION SKILLS TRAINING

105

of health care. Considerable research into physician-patient communication has demonstrated a significant link between communication and patients’ health outcomes (Ong et al., 1995; Pendleton, 1982; Roter, 1989; Thompson, 1994), but this research is only indirectly connected to training studies per se. More effort is needed to translate basic research findings into key communication skills and to organize them into a conceptual framework that guides the design of training interventions. PATIENT COMMUNICATION SKILLS TRAINING

As is evident from the last section and reviews of research into physician-patient communication in general (Korsch & Negrete, 1972; Ong et al., 1995; Pendleton, 1982; Roter, 1989; Thompson, 1994), considerable attention has been devoted to the communication skills of providers (especially physicians) over the last 30 years. In comparison, relatively little research has been devoted to patients’ communication. Given the paucity of research into patient communication skills training, we opted not to set narrow inclusion criteria. We used Anderson and Sharpe’s (1991) review of research into communication skills training as a starting point for our literature search, although we also conducted a Medline search covering the years included in their review. In addition, we conducted a Medline search of research published from 1990 to the present, and we examined relevant studies from the reference lists of all the published reports identified by the Medline searches. Our search resulted in 19 studies of patient communication skills training. Some key features of these studies are reported in Table 5.2. It should be noted that the table omits many details. Our intent was to include only information that was relevant to our concerns, namely, the communication skills that have been addressed and the methods of instructing patients. For further information, the interested reader might begin with Anderson and Shapre’s (1991) review, then access later studies as needed. Communication Skills

The potential list of relevant, specific communication skills for patients is probably as long and varied as a list of individual patients and their medical problems. However, most of the research into patient communication skills training has focused on information exchange skills. Our own research suggests that information exchange involves three fundamental skills: information seeking, information provision, and information verifying (Cegala, 1997; Cegala, Coleman, & Warisse, 1998; Cegala, McNeilis, Socha McGee, & Jonas, 1995; Cegala, Socha McGee, & McNeilis, 1996). Below, we use these concepts to organize our review of communication skills addressed in the patient training literature. Information Seeking. As noted in Table 5.2, most of the attention given to patients’ communication has focused on information seeking—question asking in particular. Because research suggests that patients often do not engage in information seeking (e.g., Beisecker & Beisecker, 1990; Ley, 1988; Parrott, 1994; Street, 1991), it is not surprising that researchers have directed their efforts this way. Despite extensive attention to question asking within the patient communication skills training literature, more research is needed. The impact of such training on patients’ question-asking is moderate, at best. Only about half of the studies reported significantly more question-asking among trained patients (Cegala, McClure, Marinelli, & Post, 2000; Cegala, Post, & McClure, 2001; Dow, Verdi, & Sacco, 1991; Robinson & Whitfield, 1985; Rost, Flavin, Cole, & McGill, 1991; Roter, 1977; Socha McGee & Cegala, 1998;

106

RC, P-P; E1n = 50, E2n = 50, Cn = 50. RC, P-P; E n = 33, Cn = 26. RC; E n = 35, Cn = 32.

Anderson et al., 1987

Tabak, 1988

Greenfield et al., 1988

— RC, P-P; E n = 23, Cn = 22.

RC, E1n = 100; E2n = 100; Cn = 50. RC, E n = 115 Cn = 107

Design a

Roter, 1984c Greenfield et al., 1985

Merkel et al., 1983

Roter, 1977

Source

TABLE 5.2

Audiotape; self-report; blood sugar. Audiotape; self-report.

Videotape; self-report.

— Audiotape; self-report.

Self-reports.

Audiotape; Self-report; Patient records.

Data Sources

Even male:female, mean age 50, mean H.S.+ education, diabetics. Mean age 35, H.S.+ education, 81% female.

Male, 60% minority, low to moderate education, mean age 58, hypertensives.

— Mostly male, mean age 55, mean H.S.+ education, ulcer patients.

No information reported other than they were adults.

Poor African American women, median age 50, hypertensives and diabetics

Patient Sample

14 residents.

11 physicians, 45 residents.

1 health educator (not a physician).

— 8 physicians.

10 family practice residents.

2 physicians, 1 nurse practitioner.

Provider Sample

Booklet encouraging patients to ask questions, model questions provided.

Same as Greenfield et al., 1985.

— 23-minute F-T-F; reviewed patient chart, encouraged to ask questions, addressed barriers to question asking, encouraged rehearsal of questions. 14-minute videotape, modeling of question-asking and raising concerns about treatment.

10 minute F-T-F; focus on question-asking protocol, eliciting patients’ expectations, some practice without feedback. 4-minute video followed by a F-T-F session in which major points were summarized and prompts for questions given.

Interventionb

Summary of Key Features of Research Into Patient Communication Skills Training, 1977 to Present

Question-asking.

Information seekingd ; negotiation skills.

Question-asking; disclosure of problems/concerns.

Question-asking; provision; verifying all in the form of suggestions in the the video. — Information seekingd ; negotiation of medical decisions.

Question-asking; verifying.

Communication Skills

107

RC, P-P; E n = 24, Cn = 24.

RC (physicians only) E n = 80, Cn = 60.

Dow et al., 1991

Lewis et al., 1991

Videotape; self-report.

Videotape; self-report.

Patient self-report.

RC; E1n = 13, E2n = 18, Cn = 18.

Study 2

Audiotape; self-report; physiological measures.

Patient self-report; physician’s report of patients’ question-asking.

RC, P-P; NRC, P-P; En = ? Cn = ? Sample totals = 105 and 43.

RC; E n = 29, Cn = 24.

Thompson et al., 1990 Study 1

Kaplan et al., 1989d

Parents and children, mean ages 38 and 8.5.

Even male:female, mean age 31, mean H.S. education, psychiatric patients.

OB/GYN patients; average age 30; white, upper midlle class.

OB/GYN patients, white upper middle class.

Hypertensive patients: mean age 54, mean grammar school education, 68% female, 62% Spanish speaking. Breast cancer patients: mean age 47, H.S.+ education, female.

34 residents.

1 person role playing a physician.

2 physicians.

1 physician.

?

?

Written list of possible OB/GYN concerns with instructions to write at least 3 questions to ask the physician: instructed to take question list into exam room. E1 received a checklist of information to obtain; asked to think about and write questions to ask physician; instructed to take question list into the exam room. E2 received a 2-sentence printed message urging patients to feel free to ask questions. 2.5 weeks, of inpatient sessions, 5, 90 minute sessions, F-T-F practice and modeling focused on question-asking about medications. Some attention to stating concerns and symptoms. 10 minute videotape, one for parent, one for child; modeling; practice for children.

Same as Greenfield et al., 1985.

continued

Children: question-asking, raising concerns. Parents: questionasking, agenda setting, expressing concerns.

Question-asking; stating concerns and symptoms.

Question-asking.

Question-asking.

Information seekingd ; negotiation skills.

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Audiotape; self-report. Physician rating.

Audiotape; patient self-report; physician perceptions.

Videotape; patient self-report.

RC; E n = ?, Cn = ? NRC; E n = 40, Cn = 40.

RC; E n = 59, Cn = 61.

RC; E n = 10, Cn = 10.

Butow et al., 1994

McCann & Weinman, 1996

Socha McGee & Cegala, 1998

Frederikson & Bull, 1995

Audiotape; self-report; blood sugar.

Data Sources

RC, P-P; E n = 30, Cn = 31.

Design a

Rost et al., 1991

Source

Mean age 37, 6 males, 14 females, 30% African American.

Mean age 43, 61% female, various social classes.

Cancer patients (N = 142), 47% inpatients, 84% female. 80 patients.

Inpatients, diabetics, mean age 40, mean H.S.+ education, 60% female.

Patient Sample

10 family practice residents.

1 physician.

1 physician.

1 physician.

22 fellows and residents.

Provider Sample

TABLE 5.2 (Continued)

Printed handout encouraging question-asking; model questions. Printed leaflet encouraging patients to think about their problem and what they hope the physician can do, tell the physician concerns clearly and concisely, listen and ask questions. Brief printed leaflet encouraging patients to take a more active role, identify problems, consider causes and possible treatments, state concerns clearly, and ask questions about diagnosis and treatment. 30-minute F-T-F session focusing on the patients’ concerns and goals for the interview; patients encouraged to ask questions on specific topics, aided in preparing questions, encouraged to provide detailed information about symptoms, encouraged to check on their understanding of information periodically throughout the interview.

Modified version of Greenfield et al. plus printed materials with audio models and role playing exercises.

Interventionb

Question-asking; information provision and verifying.

Question-asking; reference to information provision.

Question-asking; reference to information provision.

Question-asking; overcoming barriers to question asking. Question-asking.

Communication Skills

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NRC; E n = 16; Cn = 17.

—

RC; E n = 377?, Cn = 385? RC; E n = 50, C1n = 49, C2n = 51.

Audiotape; patient and physician self-reports.

—

Audiotape; patient and physician self-reports.

Self-report.

Mean age 72; 51% white; 52% H.S. or less education; 42% male.

8 primary care physicians, 1 chief resident.

—

Printed booklet same as Cegala, Marinelli et al. 2000, except modified for elderly; 30-minute F-T-F session devoted to patients’ concerns, going over booklet responses, aiding in organizing thoughts and listing questions.

Printed booklet addressing question-asking with space for practice; section on provision with question guides and space for taking notes, section on information verifying with examples: mailed to patients 2–3 days prior to interview. —

25 primary care physicians.

Mean age 45; 29% males; 27% minority patients; education from grammar school to graduate school.

—

Printed prompt card with sample questions.

13 physicians.

New patients, mostly college educated.

Question-asking; information provision and verifying.

—

Question-asking; information provision and verifying.

Question-asking.

b F-T-F

a RC

= randomized control; NRC = nonrandomized control; P-P = pre- and posttest; E = experimental (intervention) group; C = control group. = face-to-face; intervention given just prior to seeing the physician unless otherwise stated. c This is the same study as Roter (1977) except that here the content of questions was coded and examined. d Includes question-asking and controlling moves designed to elicit information. e This is a review of the results of Greenfield et al., 1985, 1988. However, data for two new samples are also reported, as listed in the table. f This is the same study as Cegala, Marinelli, et al., 2000, except here data are reported on training and patients’ discourse, whereas Cegala, Marinelli, et al., 2000 focused on training and patient compliance.

Cegala, McClure, et al., 2000f Cegala, et al., 2001

Cegala, Marinelli, et al., 2000

Fleissig et al., 1999

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Thompson, Nanni, & Schwankovsky, 1990). A partial explanation for these results may be found in the differences among instructional methods used by researchers (to be discussed below). Yet there are probably other factors that contributed to the inconsistency in results. From a communication perspective, one might characterize the overall definition and treatment of question asking as somewhat unsophisticated. Most researchers did not consider the topic of questions in their coding or analyses, and thus virtually all attention was focused on form rather than content. Even so, form was treated rather simply: Questions were typically defined only as direct information-seeking utterances. Our research and others’ work has shown that patients (and physicians) seek information in other ways besides direct questioning (Cegala, 1997; Cegala, Marinelli, & Post, 2000; Frankel, 1990). Yet, for the most part, these other forms of information seeking have been ignored in the research on patient communication skills training. Likewise, the basic definition of information seeking appears to be overly simple. For example, few researchers distinguished between questions that seek new knowledge and those that seek to clarify information already given (Anderson, DeVellis, & DeVellis, 1987; Cegala, McClure, et al., 2000; Cegala et al., 2001; Robinson & Whitfield, 1985; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). Aside from definitional issues, more attention to individual differences among patients should be included in training procedures intended to enhance information seeking. Although research studies have documented that patients do not ask physicians many questions, little attention has been devoted to understanding why this is so. Based on observation of over 200 physician-patient interviews, the first author believes that many patients simply are uncertain about what to ask physicians during a medical interview. Many patients do not formulate questions until they have had time to process what the physician has said or do not realize their lack of understanding until they try to follow the recommended treatment or explain their illness to someone. Thus, in addition to the cultural and personality factors that may affect patients’ willingness to engage in information seeking, factors such as patients’ knowledge about illness and disease, their ability to prepare questions in advance of an interview, and their ability to ask questions spontaneously during an interview are likely to affect the process and outcome of information seeking. These and other matters await researchers’ attention. Information Provision. Comparatively little attention has been given to training patients in information provision. A few studies minimally address provision by merely encouraging patients to express concerns or to report symptoms clearly and completely (Dow et al., 1991; Frederikson & Bull, 1995; Lewis, Pantell, & Sharp, 1991; McCann & Weinman, 1996; Merkel, Rudiskill, & Nierenberg, 1983). Cegala and associates appear to have devoted the most attention to patients’ information provision. In two studies, an entire section of a training booklet was devoted to information provision (Cegala, McClure et al., 2000; Cegala et al., 2001), and in a third study patients were assisted with provision matters during a face-to-face session (Socha McGee & Cegala, 1998). Patients’ provision utterances were not coded in the latter study, but a detailed coding procedure was applied in the former studies. Overall, the results indicated that trained patients engaged in significantly more information provision than untrained patients. Considerably more research is needed on the effects of patient training in information provision skills. The provision of information by patients is critical to the physicians’ ability to accurately diagnose and treat medical problems (Frederikson, 1995; Hampton,

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Harrison, Prichard, & Seymour, 1975; Peterson et al., 1992; Sandler, 1980). In addition, the efficiency and effectiveness with which patients provide information during a medical interview may have a significant bearing on the length of medical interviews, an issue of great importance within the context of managed care (Dugdale, Epstein, & Pantilat, 1999; Goold & Lipkin, 1999). Most research into patient communication skills training has found no difference in the length of interviews involving trained versus untrained patients (Butow, Dunn, Tattersall, & Jones, 1994; Cegala, McClure, et al., 2000; Cegala et al., 2001; Greenfield, Kaplan, & Ware, 1985; Greenfield, Kaplan, Ware, Yano, & Frank, 1988; Roter, 1977; Socha McGee & Cegala, 1998; Thompson et al., 1990). But given that most of the research on training has emphasized patients’ information seeking, little is known about how patients’ enhanced information provision skills may affect interview length. In light of increasing concerns about the cost of health care, there is good reason to devote more attention to the effects of training patients in provision skills. Training patients to present information effectively and efficiently may have the potential to reduce interview time while maintaining or even enhancing health care quality. Additionally, patients who efficiently and effectively provide information to their physicians may encourage them to be more complete and detailed in their own information provision, as some research suggests that training one member of the medical dyad influences the other member’s discourse in similar ways (Cegala, McClure, et al., 2000; Cegala et al., 2001; Levinson & Roter, 1993; Roter et al., 1998). Information Verifying. What we call information verifying skills are used by individuals in daily conversations to check on information. They are especially important in task-oriented communication, where accurate understanding and reception of information is critical to accomplishing a coordinated objective. In addition, information verifying skills are important to physician-patient communication because they enhance not only immediate understanding but also recall (Bertakis, 1977; Kupst, Dresser, Schulman, & Paul, 1975; Ley, 1988). When information verifying has been addressed in the patient communication skills literature, the focus has been on clarifying questions (Robinson & Whitfield, 1985; Rost et al., 1991; Roter, 1977). Research by Cegala and associates (Cegala, McClure, et al., 2000; Cegala et al., 2001) has expanded information verifying to include utterance categories beyond questions clarification. Repetitions are utterances that either request a repeat or provide a complete or partial repeat of another’s utterance, whereas formulations are summaries of key points of either one’s own discourse, another’s discourse, or part of a conversation to which multiple parties have contributed. Also included is bracketing, which involves the forecast that additional information will follow or that additional information will be sought on a particular topic. Although bracketing is not an information-verifying move per se, bracketing utterances serve to enhance understanding by allowing conversational partners to suspend immediate, potential misunderstandings about information exchange matters. Although Cegala and associates have expanded the categories of information verifying, verifying categories have shown the weakest training effects (Cegala, McClure et al., 2000; Cegala et al., 2001). Cegala et al. (2001) speculate that the reason is that informationverifying skills have been given the least amount of attention in their training materials. The issue of how much attention is devoted to training is keyed to related matters about differences in training intervention procedures. Accordingly, this is a good transition to

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the next section, which addresses the instructional strategies used to train patients in communication skills. Communication Skills Training Interventions

As indicated in Table 5.2, a variety of strategies have been used to instruct patients in communication skills. The extent to which these strategies actually teach patients communication skills is a major focus of this section. A related topic of concern is the issue of balancing instructional effectiveness with the cost and efficiency of dissemination. Whereas the specifics of interventions used in training research are quite varied, all interventions employ either face-to-face instruction, videotape, printed materials, or some combination of these. Anderson and Sharpe (1991) found in their meta-analysis that the largest effect sizes were associated with patient communication skills interventions that included modeling and/or practice components. Our review of training research is consistent with their finding, although we did not conduct a formal meta-analysis. The studies we examined that included a modeling component resulted in trained patients asking more questions, providing more information, and/or being more compliant than their untrained counterparts (Anderson et al., 1987; Cegala, Marinelli, et al., 2000; Cegala, McClure, et al., 2000; Cegala et al., 2001; Dow et al., 1991; Rost et al., 1991; Roter, 1977). Only two studies that included a modeling component resulted in no difference between trained and untrained patients’ question asking (Anderson et al., 1987; Tabak, 1988), and one study found no difference in clinical outcomes (Rost et al., 1991). We found a similar pattern among studies that included a practice component. Most of these showed improvements in question asking, information eliciting, information provision, and clinical outcomes or compliance (Cegala, Marinelli, et al., 2000; Cegala, McClure, et al., 2000; Cegala et al., 2001; Dow et al., 1991; Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). The role of modeling and practice in communication skills training research has at least two important implications. First, it underscores the idea that communication skills instruction requires more than merely reminding or encouraging patients to ask questions, or to provide complete and clear information, or to negotiate treatment options. Most patients benefit from, indeed require, seeing someone model these behaviors, and afterwards they need the opportunity to practice the skills, ideally with feedback. Most teachers of communication know and apply these principles in their instruction, and those who design and execute communication skills training for patients should apply them as well. However, a second and related implication of modeling and practice is the potential high cost of providing effective communication skills training. Modeling can often be achieved with audio- or videotape, as was done in most of the studies reviewed here. Although playback equipment is not expensive, the production of good quality audio and especially video materials is not cheap. Given the extensive media exposure, if not media sophistication, of most individuals in today’s society, there is little choice but to employ instructional materials of good quality or risk losing credibility or the patients’ interest. Inclusion of a practice component is even more costly. Most of the training studies that had a practice component accomplished it through face-to-face instruction (Cegala et al., 2001; Dow et al., 1991; Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989; Lewis et al., 1991; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). Only two studies had a practice component without face-to-face instruction. The second

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part1 of the intervention used by Rost et al. (1991) included printed take-home materials that encouraged patients to role-play as a means of practicing communication skills. The printed booklet used by Cegala et al. (2000) and Cegala et al. (2001) contained space for patients to write concerns, symptoms, and questions after reading material designed to prompt their thinking about these matters. Interestingly, although significant results were obtained in both of these latter studies, the results were considerably stronger in the second study (Cegala et al., 2001), where reading of the booklet was followed by a 30-minute face-to-face session. The point here is that most clinicians cannot afford to hire personnel to conduct faceto-face training sessions with patients. Typically, nurses are not able to perform such instructional tasks due to lack of time or skill. Accordingly, clinicians face a dilemma— either lose the benefits of incorporating modeling and practice components into patient communication skills training or pay the high costs of developing and delivering these components. Future research into patient communication skills training thus should examine ways of maximizing instructional effectiveness and ease of dissemination without increasing costs. This is a huge challenge. Several studies have shown that the most effective means of instructing patients involves tailoring objectives and content to each individual’s needs (Burke & Dunbar-Jacob, 1995; Dunbar-Jacob, Burke, & Pyczynski, 1995; Kreuter, Farrell, Olevitch, & Brennan, 2000; Rudd, 1995). It is likely that the success of several of the communication skills training studies employing face-to-face instruction was due in part to the customizing of instruction that occurred (Cegala et al., 2001; Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989; Rost et al., 1991; Roter, 1977; Socha McGee & Cegala, 1998). The need to tailor instruction, besides underscoring the importance of face-to-face practice, makes the development of effective modeling materials even more difficult and costly. Recent research using computer technology has been successful in tailoring health messages to individuals’ needs and stages of change (Kreuter et al., 2000). However, there is a considerable difference between tailoring messages that are designed to inform patients and tailoring instruction that is intended to teach complex skills, like communication. Still, computer technology in the form of CD-ROMs (e.g., Walker & Ross, 1995), particularly interactive CD-ROMs, and Web sites may provide a means for instructing patients in communication skills using modeling relatively cheaply. Those who would provide communication skills training through the use of computers, or any intervention strategy for that matter, must also confront the issue of accessibility. The patients who could benefit most from communication skills training are probably the least likely to have access to computers or know how to use them even if they were made available. Meeting the challenge to find effective, cheap, and easily disseminated instructional materials for patient communication skills training will require the talent and effort of many scholars. The current research into patient communication skills training suggests that meeting this challenge would be well worth the time and effort needed. CONCLUSION

We conclude this chapter with a few comments about additional directions for future research into communication skills training. Our first observation has to do with long-term

1 The first part of the Rost et al. (1991) intervention took place in a hospital setting and included a face-to-face practice session with a health educator.

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training effects. Overall, few studies have examined the effects of training beyond immediate postintervention assessment. Some of the provider communication skills training studies examined long-term effects (Bowman et al., 1992; Maguire, Booth, et al., 1996; Stein & Kwan, 1999), but none of these employed a randomized, controlled design with pre- and posttesting, and one assessed only the participants’ self-judgments of communication skills (Stein & Kwan, 1999). None of the patient communication skills training studies systematically examined long-term effects. A few studies assessed outcomes beyond immediate training, but there is no way of determining if the results were due to long-term effects of the training procedure (Greenfield et al., 1988; Rost et al., 1991; Roter, 1977). Given the high cost of training for both providers and patients, it is important for future research to determine the long-term effects of training interventions and what, if any, means of periodic reinforcement may be needed to maintain participants’ communication skills. A second and related observation concerns the generalization and transference of communication skills. This issue is perhaps less significant for providers than it is for patients. Regarding patients, most of the training efforts have occurred within a primary care context. Although this context is centrally important to modern health care given the prevalence of managed care, it is not clear if communication skills learned within that context are easily transferred to other health settings, such as communication with specialists, for example. Although some research into provider training has examined specialties, especially oncology, no research to our knowledge has examined the effects of patient communication skills training within a specialty context. Thus, we do not know if existing training interventions require modification to be used in specialty contexts, nor do we know if communication skills are transferred from primary care to specialty settings. Given the illnesses (e.g., cancer, heart disease, and stroke) that account for major health care costs in dollars and human suffering, future research should examine communication skills training in specialty settings and determine the extent of transference of communication skills training from one medical setting to another. A related research task is to determine how patients’ individual characteristics (e.g., age, gender, ethnicity, education) interact with communication skills training interventions. For example, we do not know to what extent patients’ education relates to the kind of intervention methods used for delivering instruction (e.g., print, face-to-face, videotape). Such factors, to the extent they do interact with interventions, could be of considerable importance in addressing issues of cost, dissemination, and accessibility of communication skills training interventions. Finally, it is clear from this review that communication skills training has been directed to either providers or patients. In only one study were both providers and patients trained in communication skills (Lewis et al., 1991). Whatever else we know about communication, we do know that it is a process dependent upon the contributions of all participants. Understanding the process and developing ways to improve it must involve paying attention to all conversational partners’ contributions and perceptions. From what has been done so far, we have reasonably clear evidence that communication skills training has positive effects on providers and patients. Future research needs to systematically examine the relative and interactive contributions of providers and patients. For example, we need randomized, controlled studies that allow for outcome comparisons between groups in which only one participant (provider or patient) is trained and groups in which both are trained. Such research will allow for the determination of the relative contributions of trained participants and, more importantly, will lay the ground work for interventions designed to enhance training effects by interfacing and complementing the skills taught to

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Maguire, P., Booth, K., Elliott, C., & Jones, B. (1996). Helping health professionals involved in cancer care acquire key interviewing skills: The impact of workshops. European Journal of Cancer, 32A, 1486–1489. Maguire, P., Faulkner, A., Booth, K., Elliott, C., & Hillier, V. (1996). Helping cancer patients disclose their concerns. European Journal of Cancer, 32A, 78–81. Makoul, G. (1999). Communication in Medicine. (Contemporary Issues in Medicine Report No. 3). Washington, DC: Association of American Medical Colleges. McCann, S., & Weinman, J. (1996). Empowering the patient in the consultation: A pilot study. Patient Education and Counseling, 27, 227–234. Merkel, W. T., Rudisill, J. P., & Nierenberg, B. P. (1983). Preparing patients to see the doctor: Effects on patients and physicians in a family practice center. Family Practice Research Journal, 2, 147–163. Morgan, E. R., & Winter, R. J. (1996). Teaching communication skills: An essential part of residency training. Archives of Pediatric and Adolescant Medicine, 150, 638–642. Ong, L. M. L., DeHaes, J. C. J. M., Hoos, A. M., & Lammes, F. B. (1995). Doctor-patient communication: A review of the literature. Social Science and Medicine, 40, 903–918. Parrott, R. (1994). Exploring family practitioners’ and patients’ information exchange about prescribed medications: Implications for practitioners’ interviewing and patients’ understanding. Health Communication, 6, 267–280. Pendleton, D. A. (1982). Doctor-patient communication: A review of the literature. In D. A. Pendleton & J. C. Hasler (Eds.), Doctor-patient communication (pp. 5–53). London: Academic Press. Peterson, M. C., Holbrook, J. H., Hales, D., Smith, N. L., & Staker, L. U. (1992). Contributions of the history, physical examination, and laboratory investigation in making medical diagnoses. Western Journal of Medicine, 156, 163–165. Robinson, E. J., & Whitfield, M. J. (1985). Improving the efficiency of patients’ comprehension monitoring: A way of increasing patients’ participation in general practice consultations. Social Science and Medicine, 21, 915–919. Rost, K. M., Flavin, K. S., Cole, K., & McGill, J. B. (1991). Change in metabolic control and functional status after hospitalization: Impact of patient activation intervention in diabetic patients. Diabetes Care, 14, 881–889. Roter, D. L. (1977). Patient participation in the patient-provider interaction: The effects of patient question asking on the quality of interaction, satisfaction and compliance. Health Education Monographs, 5, 281–315. Roter, D. L. (1984). Patient question-asking in physician-patient interaction. Health Psychology, 3, 395–409. Roter, D. L. (1989). Which facets of communication have strong effects on outcome: A meta analysis. In M. Stewart & D. Roter (Eds.), Communicating with medical patients (pp. 183– 196). Newbury Park, CA: Sage. Roter, D. L., Cole, K. A., Kern, D. E., Barker, L. R., & Grayson, M. (1990). An evaluation of residency training in interviewing skills and the psychosocial domain of medical practice. Journal of General Internal Medicine, 5, 347–354. Roter, D. L., Hall, J. A., Kern, D. E., Barker, L. R., Cole, K. A., & Roca, R. P. (1995). Improving physicians’ interviewing skills and reducing patients’ emotional distress: A randomized clinical trial. Archives of Internal Medicine, 155, 1877–1884. Roter, D., Rosenbaum, J., de Negri, B., Renaud, D., DiPrete-Brown, L., & Hernandez, O. (1998). The effects of a continuing medical education programme in interpersonal communication skills on doctor practice and patient satisfaction in Trinidad and Tobago. Medical Education, 32, 181–189.

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Rudd, P. (1995). Clinicians and patients with hypertension: Unsettled issues about compliance. American Heart Journal, 130, 572–579. Sandler, G. (1980). The importance of the history in the medical clinic and the cost of unecessary tests. American Heart Journal, 100, 928–931. Sanson-Fisher, R., & Cockburn, J. (1997). Effective teaching of communication skills for medical practice: Selecting an appropriate clinical context. Medical Education, 31, 52–57. Silverman, J., Kurtz, S., & Draper, J. (1998). Skills for communicating with patients. Abingdon, England: Radcliff Medical Press. Smith, R. C., Lyles, J. S., Mettler, J. A., Marshall, A. A., Van Egeren, L. F., Stoffelmayr, B. E., Osborn, G. G., & Shebroe, V. (1995). A strategy for improving patient satisfaction by the intensive training of residents in psychosocial medicine: A controlled, randomized study. Academic Medicine, 70, 729–732. Smith, R. C., Lyles, J. S., Mettler, J., Stoffelmayr, B. E., Van Egeren, L. F., Marshall, A. A., Gardiner, J. C., Maduschke, K. M., Stanley, J. M., Osborn, G. G., Shebroe, V., & Greenbaum, R. B. (1998). The effectiveness of intensive training for residents in interviewing. A randomized, controlled study. Annals of Internal Medicine, 128(2), 118–126. Smith, R. C., Mettler, J. A., Stoffelmayr, B. E., Lyles, J. S., Marshall, A. A., Van Egeren, L. F., Osborn, G. G., & Shebroe, V. (1995). Improving resident’s confidence in using psychosocial skills. J. Gen. Intern. Med., 10, 315–320. Smith, R. C., Osborn, G., Hoppe, R. B., Lyles, J. S., Van Egeren, L., Henery, R., Sego, D., Alguire, P., & Stoffelmayr, B. (1991). Efficacy of a one-month training block in psychosocial medicine for residents: A controlled study. Journal of General Internal Medicine, 6, 535– 543. Socha McGee, D., & Cegala, D. J. (1998). Patient communication skills training for improved communication competence in the primary care medical consultation. Journal of Applied Communication Research, 26, 412–430. Stein, T. S., & Kwan, J. (1999). Thriving in a busy practice: Physician-patient communication training. Effective Clinical Practice, 2, 63–70. Street, R. L., Jr. (1991). Information-giving in medical consultations: The influence of parents’ communicative styles and personal characteristics. Social Science and Medicine, 32, 541– 548. Tabak, E. R. (1988). Encouraging patient question-asking: A clinical trial. Patient Education and Counseling, 12, 37–49. Thompson, S. C., Nanni, C., & Schwankovsky, L. (1990). Patient-oriented interventions to improve communication in a medical office visit. Health Psychology, 9, 390–404. Thompson, T. L. (1994). Interpersonal communication and health care. In M. L. Knapp & G. R. Miller (Eds.), Handbook of interpersonal communication (2nd ed., pp. 696–779). Newbury Park, CA: Sage. Vaidya, V. U., Greenberg, L. W., Patel, K. M., Strauss, L. H., & Pollack, M. M. (1999). Teaching physicians how to break bad news: A 1-day workshop using standardized parents. Archives of Pediatric and Adolescent Medicine, 153, 419–422. Walker, D., & Ross, J. M. (1995). Therapeutic computing: Teaching therapeutic communications utilizing a videodisc. Computers in Nursing, 13, 103–108.

6 The Nature of the Therapeutic Relationship and the Assessment of Its Discourse in Routine Medical Visits Debra Roter Johns Hopkins University School of Public Health

Kelly S. McNeilis Southwest Missouri State University

HISTORICAL PERSPECTIVE

In one manner or another, the construct of the physician-patient relationship and its expression through the medical dialogue has been described or alluded to in the history of medicine since the time of the Greeks (e.g., Plato’s The Gorgias) and in the modern medical and social sciences literature for the past 50 years (Engel, 1977; Freidson, 1970; Parsons, 1951; Szasz & Hollender, 1956). Nevertheless, historians of modern medicine have tracked an undeniable decline in the centrality of communication to the care process. In his study of the history of physicians and patients, Shorter (1985) attributes the denigration of communication to the ascendancy of the molecular and chemistry-oriented sciences as the predominant 20th-century medical paradigm. This change was fundamental in directing medical inquiry away from the person of the patient to the biochemistry and pathophysiology of the patient. It was not coincidental that the practice of interviewing patients from a written outline designed around a series of yes/no hypothesis-testing questions replaced unstructured medical histories at this point in the history of medicine. White (1988) lamented that, because of this shift toward a biomedical focus, physicians fail to recognize that “apples are red and sweet as well as being composed of cells and molecules” (p. 6). Lacking a pathway to collaboration and partnership, many see the need for fundamental reform in medicine’s vision. Just as the molecular and chemistry-oriented sciences were adopted as last century’s medical paradigm, incorporation of the patient’s perspective into medicine’s definition of patient need has been suggested as the medical paradigm of the 21st century (Engel, 1988; White, 1988; McWhinney, 1989). The medical dialogue is the fundamental instrument through which the battle over paradigms is being waged; the patient’s problem will be anchored in either a biomedical and disease context or a broader and more integrated illness context that incorporates the

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patient perspective (Mishler, 1984). In other words the nature of the patient’s problem will be established and the visit’s agenda and therapeutic course will be determined by whichever paradigm wins out. A debate of long-standing intensity related to the assessment of medical dialogue centers on the distinctions between quantitative and qualitative evaluative approaches (Roter & Frankel, 1992). The heat of the debate is derived not merely from a disagreement over the relative advantages and disadvantages of qualitative and quantitative methods but from the broader perception that these methods reflect incompatible paradigms. Advocates of these methods have not only argued their relative merits but maintained unusually critical and intellectually isolated positions. A well-recognized list of attributes distinguish the quantitative and qualitative paradigms and their adherents. The quantitative worldview has been characterized as hypothetico-deductive, particularistic, objective, and outcome-oriented; its researchers are logical positivists. Quantitative researchers typically present statistical summaries and correlates of objectively measured patient and provider behaviors. In contrast, the qualitative worldview has been characterized as social anthropological, inductive, holistic, subjective, and process-oriented; its researchers are phenomenologists (Reichardt & Cook, 1969). Qualitatively inclined researchers rarely assign numerical values to their observations but prefer instead to record data in the language of their subjects, almost always presenting actual speech in the form of verbatim transcripts of audio- and videotape recordings. An allegiance to a particular paradigm implies not only a worldview but also a paradigm-specific method of inquiry and even styles of presentation. There is a certain parallel between the systems of open-sea navigation described by the cultural anthropologist Thomas Gladwin and the debate among researchers over qualitative and quantitative methods (Gladwin, 1964). The system of navigation represented by the European tradition is distinguished by the plotting of a course prior to a journey’s beginning that subsequently guides all decisions regarding location. The extent to which the ship “stays the course” is a testament to the navigator’s skill. The Islanders of Truk face the problem of managing long distances in uncertain conditions in a very different manner than the Europeans. The Trukese navigator has no preestablished plan of any kind; experience from previous voyages and information at hand during the current sailing trip is all that the Trukese navigator uses for guidance. The purpose of this chapter is to provide a broad context for understanding the nature of the therapeutic relationship and the assessment and consequences of its discourse in routine medical visits. We review the major coding schemes and perspectives used to study patient-physician interaction and highlight the complementarity of the qualitative and quantitative approaches to this type of analysis. Finally, we suggest future directions for research in this area. THE THERAPEUTIC RELATIONSHIP

Bioethicists Emanuel and Emanuel (1992) suggested that power relations in medical visits are expressed through several key elements, including (1) who sets the agenda and goals of the visit (the physician, the patient, or the physician and patient in negotiation); (2) the role of patients’ values (assumed by the physician to be consistent with their own, jointly explored by the patient and physician, or unexamined); and (3) the functional role assumed by the physician (guardian, advisor, or consultant). Application of these core elements can be useful in recognizing the variety of power relations expressed in models of the physician-patient relationship. Table 6.1 summarizes the four relational styles or models that result from various configurations of patient and physician control.

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TABLE 6.1

Types of Physician-Patient Relationships Physician Control

Patient Control

Low High

Low

High

Default Consumerism

Paternalism Mutuality

Mutuality, the model named in the lower right quadrant, occurs when the participants are on a relatively even footing. Because power in the relationship is balanced, the goals, agenda, and decisions are the result of negotiation between the participants; both the patient and the physician become part of a joint venture. The medical dialogue is the vehicle through which patient values are explicitly articulated and explored. Throughout this process, the physician acts as a counselor or advisor. Paternalism, the most prevalent but not necessarily most efficient or desirable model, is shown in the upper right quadrant. In this model, the physician dominates agenda and goal setting and decision making in regard to both information and services; the medical condition is defined in biomedical terms, and the patient’s voice is largely absent. The physician’s obligation is to act in the patient’s “best interest.” The determination of the patient’s best interest, however, is largely based on the assumption that the patient’s values and preferences are the same as those of the physician. In essence, the physician acts as the patient’s guardian makes decisions regardless of the patient’s preferences. Even when both parties have mutually agreed upon a paternalistic relationship, the patient and physician are often on so unequal a footing that the patient is unable to shape the relationship to the same degree as the physics. The possibility exists, then, that the patient may adopt a passive role, not fully aware of alternatives or able to negotiate a more active stance (President’s Commission, 1982). In the third model, consumerism, the typical power relationship may be reversed. The patient may set the goals and agenda for the visit and take sole responsibility for decision making. Patient demands for information and technical services are accommodated by a cooperating physician, and patient values are defined and fixed by the patient and unexamined by the physician. The consumerist model redefines the medical encounter as a marketplace transaction. Caveat emptor (“let the buyer beware”) rules the transaction, with power resting with the buyer (patient), who can make the decision to buy (seek care) or not as he or she sees fit (Haug & Lavin, 1983). The physician’s role is to act as a technical consultant, obliged to provide information and services contingent upon patient preferences (and within professional norms). Fault can also be found with the consumerist model, for it overly narrows the physician’s role. Patients may limit physician participation in decision making without appreciating the full benefits that inclusion of the physician’s perspective can add (Roter & Hall, 1992; Schneider, 1998). When patient and physician expectations are at odds or when needed change in the relationship cannot be negotiated, the relationship may come to a dysfunctional standstill, a kind of relationship default, as represented in the upper left of the table. A default situation is characterized by unclear or contested common goals, unclear or neglected patient values, and an uncertain role for the physician. It is here where medical management may be least effective, with neither the patient nor the physician sensing progress or direction. A frustrated and angry patient may make inappropriate time and service demands and

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ultimately drop out of care completely because of failed expectations. The physician may view the patient as “difficult and hateful” and view the patient’s visits as representing the most frustrating aspects of medicine. Unless alignment of the relationship is undertaken through direct intervention, the relationship is likely to continue to unravel and ultimately fail. Such interactional styles, combined with the communicative requirements of the medical interaction, are the very elements health communication researchers study. The following sections cover the quantitative and qualitative approaches that researchers employ to study communication elements and relational styles in physician-patient interaction. MEASUREMENT OF COMMUNICATION DYNAMICS Quantitative Approaches to Interaction Analysis

It is only since the mid-l960’s that the actual dynamics of the therapeutic dialogue have been observed in any systematic manner and an attempt to recast this aspect of medicine as science has been made. Increased methodological and technological sophistication has made observation and analysis of the medical visit easier over the years, and indeed the number of empirical studies of physician-patient communication doubled from l982 to l987 (Roter, Hall, & Katz, 1988). A review of studies directly assessing patient-provider communication and its correlates found 28 different analysis systems used in 61 studies (Roter et al., 1988). Half the studies used audiotape as their primary method of observation; the remaining studies were equally likely to use videotape or impartial observers. In recent years, there appears to be a trend away from the use of observers to creating “hard copy” records of the interaction—a trend no doubt related to the increasing complexity of analysis schemes that favor a verbatim record. The choice of video- or audiotape as a means of observation was closely related to the kind of research undertaken. Research done to facilitate physician training and medical education favored the use of videotape, whereas audiotape was the frequent choice in more general research. Much of the training research made use of videotape not only as a source of evaluative data but as an intervention tool as well. Roter et al. (1988) reported a great deal of diversity in the analysis approaches they reviewed. More than half the investigators employed an analysis system uniquely designed for their current study, and the other investigators used a coding approach, usually with some minor modifications, employed in a prior study by themselves or other investigators. The most commonly used process analysis systems were those of Bales, Roter, and Stiles, but even these were used in only five to seven studies each. Some half dozen other systems were used in at least one prior study. Most unique systems attempted to abstract and categorize the factual information physicians communicated during the encounter. The 17 studies of this kind ranged from very simple counts of information to complex assessments of exactly what was communicated as well as what that information might mean to the patient. Unlike process analysis, content systems were generally limited to the one coded category of information giving and did not attempt to put it within the broader context of physician and patient communication. The studies did, however, generally relate the communicated information to patient recall. A more recent review of communication assessment instruments covering the period 1986 to 1996 identified a total of 44 instruments (Boon & Stewart, 1998). Approximately one third of these were designed to evaluate student performance in communication skills training programs; of these, only 3 were used by an investigator other than the system’s

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author, although not within the past 15 years. Also identified in the review were 28 systems used primarily for the assessment of communication in research studies. In this category, 4 systems were used by multiple investigators. As was true in the Roter et al. (1988) study, the most commonly used systems were those of Bales, Stiles, and Roter. In addition, the patient-centered method was used by multiple investigators. A brief overview of each of these four systems is provided below. Bales’ Process Analysis System. Concerned with group dynamics, Bales (l950) developed an analysis system for assessing patterns of interaction and communication and decision-making processes within small groups. Since its original conceptualization, Bales’ approach has been more widely modified than any other single approach to understanding the dynamics of the medical encounter. Bales’ system focuses on ways in which the process and structure of communication among persons in a group reflects how they differentially participate in problem solving. It is based on the premise that problem solving occurs in two domains, the task domain and the socioemotional domain. Interaction is described in terms of 12 mutually exclusive categories. Six are conceived as affectively neutral and ascribed to the task domain (e.g., gives suggestion or asks for orientation), and 6 are viewed as representing the socioemotional domain. These latter are divided into positive and negative affective categories (e.g., agrees or disagrees; shows tension release or shows tension). Analysis using Bales’ system focuses on literal transcripts of the verbal events of an encounter. These events are operationally defined as the smallest discriminable speech segments to which the rater can assign a classification. A unit may be as short as a single word or as long as a lengthy sentence. Compound sentences are usually divided at the conjunction, and sentence clauses are scored as separate units when they convey a single item of thought or behavior, such as an acknowledgement, evaluation, or greeting. Inasmuch as Bales’ system was originally devised to study group interaction, many researchers who derived theoretical direction from the system extensively changed the substantive categories to more directly reflect dyadic medical interaction. Nevertheless, the first studies of medical dialogue using Bales’ process analysis system, which were done in the late 1960s and 1970s, are still cited as the seminal studies on physician-patient communication (Davis, 1969, 1971; Freemon, Negrete, Davis, & Korsch, 1971; Korsch, Gozzi, & Francis, l968). Additional studies done in the 1980s on adult visits (Stewart, 1984) and pediatric visits (Starfield et al., 1981) were also closely modeled on Bale’s system. The Verbal Response Mode (VRM). The Verbal Response Mode (VRM), an alternative theoretical approach based on linguistic theory, was introduced by William Stiles (1992). Like Bales’ system, the VRM is a general-purpose system for coding speech acts and has uses beyond analyzing medical encounters. The unit of analysis is a speech segment, defined grammatically as equivalent to one psychological unit of experience— that is, a single utterance. The operational definition of an utterance is similar to that used by Bales. In particular, an utterance can be a simple sentence, an independent clause, a nonrestrictive dependent clause, an element of a compound predicate, or a term of acknowledgement, evaluation, or address. The system forms a taxonomy that implies a particular interpersonal intent or microrelationship between communicator and recipient. There are three principles of classification: the source of experience, operationalized as attentiveness (to the other speaker) or informativeness (the speaker’s own experience); presumption about experience,

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operationalized as directive (controlling dialogue) or acquiescent (deferring to the other’s viewpoint); and, finally, the frame of reference, defined as presumptuous (presuming knowledge about the other person) or unassuming (not presuming particular knowledge). Each of these classification principles is dichotomous, taking the value of “the speaker” or “the other.” The taxonomy assigns language segments to the categories—disclosure, edification, advisement, confirmation, question, acknowledgement, interpretation, and reflection—in the following ways. Source of experience refers to a speaker’s attentiveness to the other person, including utterances that relate to the other person’s experience (i.e., questions, acknowledgments, interpretations, and reflections). Informative utterances reflect the speaker’s own experience through disclosures of thoughts, feelings, wishes, perceptions, or intentions concerning the speaker’s experience (i.e., disclosures, edifications, advisements, and confirmations). Directiveness refers to the speaker’s control of the dialogue, including utterances that use the speaker’s frame of reference or viewpoint (i.e., disclosures, questions, advisements, and interpretations). Acquiescent utterances (i.e., edifications, acknowledgments, confirmations, and reflections) allow the other’s viewpoint to determine the course of the conversation. In presumptuous utterances (i.e., advisements, interpretations, confirmations, and reflections), a speaker expressly presumes knowledge about the other person. For example, when one utters a reflection, one presumes to understand the other’s experience. Similarly, when one utters an advisement (guiding another person’s behavior), one presumes to know what the other should do. Unassuming utterances (i.e., disclosures, questions, edifications, and acknowledgments) make no such presumption. Using this taxonomy, each speech segment is coded twice, once with respect to its grammatical form (or literal meaning) and once with respect to its communicative intent (or pragmatic meaning). Thus, there are 64 possible form-intent combinations, 8 pure modes, in which form and intent coincide, and 56 mixed modes, in which they differ. The reliability of VRM coding appears to be adequate. Stiles reported 81% agreement for form and 66% for intent (based on Cohen’s Kappa) in a study of parent-child interaction (Stiles & White, 1981), and Meeuwesen, Schaap, and van der Staak (1991), in their study of primary care visits, reported an average of 78% agreement over categories. The VRM has been used by its author and several others in studies in the United States, the United Kingdom, and the Netherlands. These include studies on primary care (Inui, Carter, Kukull, & Haigh, 1982; Stiles, Putnam, & Jacob, 1982) and studies of patients with particular types of problems, including hypertensive patients (Orth, Stiles, Scherwitz, Hennrickus, & Vallbona, 1987), expectant mothers (Brownbridge, Lilford, & Tindale-Biscoe, 1988), breast cancer patients (Burton, Parker, & Wollner, 1991), patients with physical complaints possessing psychological components (Meeuwesen et al., 1991), and the institutionalized aged (Caporael, 1981). See Stiles (1992) for a more exhaustive review of VRM studies. The Roter Interaction Analysis System (RIAS). The RIAS is derived loosely from social exchange theories related to interpersonal influence, problem solving (Bales, 1950; Emerson, l976), and reciprocity (Ben-Sira, 1980; Davis, 1969; Gouldner, l960; Roter & Hall, 1989). It provides a tool for viewing the dynamics and consequences of patients’ and providers’ exchange of resources through the interaction of the medical dialogue. The social exchange orientation is consistent with health education and empowerment perspectives that view the medical encounter as a “meeting between experts” and is grounded in an egalitarian model of patient-provider partnership that rejects expert domination and passive patient roles (Freire, 1983; Roter, 1987, 2000a, 2000b;

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Roter & Hall, 1992; Tuckett, Boulton, Olson, & Williams, 1985; Wallerstein & Bernstein, 1988). A good way to organize and ground RIAS-coded communication in the clinical encounter is to use a functional model of medical interviewing (Cohen-Cole, 1991). In this model, task behaviors fall within two of the medical interview functions: “gathering data” to understand patient problems and “educating and counseling” patients about their illness and motivating them to adhere to treatment. Affective behaviors generally reflect a third medical interview function, “building a relationship” through developing rapport and being responsiveness to the patient’s emotions. A fourth function of the visit, “partnership building” involves enhancing patients’ capacity to engage in an effective partnership with their physicians. Although not explicitly defined by the authors of the functional model, the use of verbal strategies to help patients integrate and translate between the biomedical and psychosocial paradigms of the therapeutic dialogue deserves special note. The “activating” function facilitates the expression of patients’ expectations, preferences, and perspectives so that they may more meaningfully participate in treatment and management decision-making (Roter, 2000a). The RIAS is applied to the smallest unit of expression to which a meaningful code can be assigned, generally a complete thought. These units are assigned to mutually exclusive and exhaustive categories that reflect the content and form of the medical dialogue. Form distinguishes utterances that are primarily informative (information-giving statements), persuasive (counseling statements), interrogative (closed and open-ended questions), affective (social, positive, negative, and emotional utterances), and process oriented (partnership-building utterances, orientations, and transitions). Content areas are specified for exchanges about medical condition and history, therapeutic regimen, lifestyle behaviors, and psychosocial topics relating to social relations and feelings and emotions. In addition to assigning utterances to the verbal categories of exchange, coders rate each speaker on a 6-point scale reflecting a range of affective dimensions, including anger, anxiety, dominance, interest, and friendliness. The ratings have been found to reflect voice tone channels that are largely independent of literal verbal content (Hall, Roter, & Rand, 1981). The system is flexible and can be tailored to the study context by adding or elaborating categories. The variables that can be calculated include total amount of talk (by participant), the ratio of provider to patient talk (an indication of verbal dominance), and the ratio of biomedical to psychosocial talk (an indicator of topic focus). Patient-centeredness scores can be computed by calculating the ratio of patient to physician communication control: the sum of physician information giving (including biomedical and psychosocial information giving) and patient psychosocial information giving and question asking divided by the sum of physician question asking and patient biomedical information giving. Calculating such variables is similar to the approach taken in several studies (Wissow et al., 1998) and by other investigators (Greenfield, Kaplan, & Ware, 1985). Coders apply the RIAS directly to audiotapes without transcription, using direct entry software that can be applied to digitized audio or video files or used with analogue audioor videotape recordings. When additional coding tasks are added—for instance, noting the presence of targeted skills, adding selected verbatim excerpts of dialogue or word use, or marking the dialogue of additional participants—coding may take longer. The RIAS has demonstrated substantial reliability and predictive validity for a variety of patient outcomes. In the first author’s own studies, the reliability has ranged across categories, from roughly .7 to .9 based on Pearson correlation coefficients, with lower reliabilities reflecting infrequent categories (Roter, Hall, & Katz, 1987; Roter et al., 1997;

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Wissow et al., 1998). Other researchers have reported similar reliabilities (Inui et al., 1982; Bensing & Dronkers, 1992; Van Dulmen, Verhaak, & Bilo, 1997; Mead & Bower, 2000). The RIAS has been widely used in studies in the United States and Europe as well as Asia, Africa, and Latin America. It has been applied to a variety of medical settings and specialties (i.e., adult and pediatric primary care, emergency medicine, obstetrics and gynecology, oncology, surgery, nursing, podiatry, and dentistry) as both a descriptive and evaluative research tool and a teaching tool. See Roter and Larson (2001) for representative references to the RIAS. A System for Measuring Patient-Centeredness. This system, developed specifically to assess the patient-centeredness of patient and physician behaviors (McWhinney, 1989; Stewart et al., 1995), involves scoring audiotaped or videotaped medical encounters (Brown, Weston, & Stewart, 1989; Levenstein, McCracken, McWhinney, Stewart, & Brown, 1986; Stewart et al., 1995). The scoring procedure is described in detail elsewhere (Brown, Stewart, & Tessier, 1995: Henbest & Stewart, 1989; Stewart et al., 1995), but the scores range from 0 (not at all patient-centered) to 100 (very patientcentered) based on an assessment of three main components. The first component is “understanding of the patients’ disease and experience.” This understanding is indicated by the specification of statements related to six elements of the illness experience: symptoms, prompts, ideas, expectations, feelings, and impact on function. Every pertinent statement for each of the six elements made by the patient is recorded verbatim on the coding sheet. The coder assigns a score based on whether the physician provided preliminary exploration (yes or no), further exploration (yes or no), or cut off discussion (yes or no). The second component, “understanding the whole person,” identifies the extent to which the physician and patient explore the context of the patient’s life setting (e.g., family, work, social supports) and stages of personal development (e.g., life cycle). The third component, “finding common ground,” reflects the development of mutual understanding and agreement in three key areas: the nature of the problems and priorities, the goals of treatment and management, and the roles of the physician and patient. Interrater reliability reported by the system’s authors and their raters ranged between .69 and .83 (Brown, Stewart, McCracken, McWhinney, & Levenstein, 1986; Stewart et al., 1996). Mead and Bower (2000) reported an intraclass correlation coefficient of .58 for use of the system in their study. Other Code Systems. The four systems reviewed above are the most widely recognized. There are a variety of other communicative phenomena being studied using somewhat different coding systems. These systems have been used primarily by their creators, although their results are as relevant and reliable as the more established systems. Further, some of these coding systems are grounded in theoretical frameworks. Four representative examples of previously published and reliable coding schemes are briefly reviewed below. One group of researchers, dissatisfied with single-level coding systems that inadequately assessed complex communicative moves, developed the Multi-Dimensional Interactional Analysis System (MDIA). They have primarily applied the system to the study of physician–elderly patient interactions (Charon, Greene, & Adelman, 1994; Greene, Adelman, Friedmann, & Charon, 1994). The purpose of the system is to capture complex information and relational strategies enacted by participants. Six components are coded: content (and who initiates), topic responsiveness, relational messages, overall task performance by physician and patient, three major topics covered, and sentinel events.

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Greene et al. (1994) found older patient satisfaction was positively correlated with patient information-giving on patient-initiated topics, physician questions and supportiveness, length of visit, negatively phrased physician questions, shared laughter, and physician satisfaction. Three other systems are noted for their theoretical focus and creativity in charting new territory. Street and Millay (2001) have combined both qualitative and quantitative methods to develop a new system to assess patient participation in medical interviews. Other researchers have taken the well-established Relational Control Coding Scheme (RCCS) developed by Rogers and Farace (1975) and applied it to various medical settings and sites in order to uncover relational control patterns in provider-patient interactions (Cecil, 1998; von Frederichs-Fitzwater, & Giligun, 2001). Using a communicative competence framework, McNeilis (2001) developed the Coordination and Competence System (CACS) to assess patterns of competent and less competent physician-patient communication. Three components are coded, including content, utterance alignment (two levels), and function (McNeilis, 2001). A recent study using this coding scheme reported that independent ratings of medical students’ communication competence were related to the coding of their utterances in simulated patient interactions (Gillotti, Thompson, & McNeilis, in press). The study indicated the specific communicative behaviors that predicted judgments of competence. Comparison Studies

Two studies and one special journal issue compared coding systems in an attempt to draw some conclusions regarding their relative practical and predictive value or to validate one system by comparing with another. In the first of these studies, Bales’ original process analysis scheme, the RIAS, and the VRM were compared by Inui and associates (Inui et al., l982). The three interaction analysis systems were applied to 101 new-patient visits to a general medical clinic for which patient knowledge, satisfaction, recall of prescribed medications, and compliance had been determined. The investigators found that the explanatory power of the three systems differed. For instance, Bales’ system explained 19% of the variation between patients who took prescribed drugs correctly, compared with 28% for the RIAS and none for the VRM. Explanation of variation in knowledge was somewhat better for the RIAS than for Bales’ system and the VRM, and satisfaction also favored the RIAS and Bales’ systems. Specific findings were as follows: Physicians’ giving of directions and orientation to a patient was negatively related to knowledge, expressions of tension (verbal or nonverbal) were negatively related to satisfaction, and patient bids for clarification and physician anxiety (global ratings) were negatively related to compliance. In the second comparative study, the RIAS, a measure of patient-centeredness using the Henbest and Stewart coding approach (1989), and a global measure devised for use in the Euro-communication study were compared (Mead & Bower, 2000). The three instruments were each applied to the same sample of 55 videotaped general practice consultations. Correlations between the three measures were low, with correlations of similar magnitude between the Euro-communication rating scale and the RIAS ( Pearson correlation = .37; p < .01) and the Euro-communication rating scale and the Henbest and Stewart measure (Pearson correlation = .37; p < .01). The lowest correlation was between the RIAS and Henbest and Stewart measure (Pearson correlation = .21; p < 12). The Euro-communication rating scale was significantly correlated with five variables: physician age, perceived acquaintance with the patient, consultation length, proportion

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of patient-directed eye gaze in the consultation, and physician ratings of the importance of psychological factors. The RIAS was significantly correlated with all of these variables except physician age. In addition, the RIAS was correlated with the patient’s score on the General Health Questionnaire, a validated measure of emotional distress (Goldberg & Williams, 1988), patient age, and patient health status. The Henbest and Stewart (1989) measure was significantly associated with only one of the measures—patient-directed eye gaze. Recently, a special issue of Health Communication (Thompson, 2001) was devoted to reporting the results of new and previously published coding systems. Six different systems, including the RIAS, the patient-centered method, and the VRM, were applied to the same data set (10 general practitioner–patient interactions collected from an urban family practice clinic). The three other systems, included for their new or enduring theoretical contributions, were the CACS (McNeilis, 2001), a system for assessing patient participation (Street & Millay, 2001), and a relational control coding system (von Frederichs-Fitzwater & Giligun, 2001). Unfortunately, various problems with confidentiality and access prevented the authors from relating their coding results to outcome data. Despite this, there were dramatic similarities noted between the systems’ categories and between their goals, and there was also a conceptual linkage between the systems regarding patient participation in the medical interview (Rimal, 2001). In particular, Rimal noted that who controls the interview, as indicated by topic changes, amount of talk time, and expertise, is related to the capacity and willingness of patients to participate in the medical interview. Frankel (2001) also reviewed the results and reported that the goal of the special issue was not to highlight the superiority of one system over another. Instead, the value of such comparison studies lies in the sharing of results and expansion research objectives that can occur. Both Rimal and Frankel were quick to point out, however, that the standards for reporting results and identifying reliability and validity need vast improvement for this research tradition to continue to improve. Qualitative Inquiry into Health Communication

Increasingly over the past decade, studies using primarily qualitative methods for analyzing the physician-patient relationship have been published in medical, interdisciplinary, and communication journals. Unlike research using the coding systems described in the previous section, most qualitative health communication research does not rely on previous research or analytical schemes—its objectives are different. Qualitative communication research focuses on examining communicative practices and performances in a particular context. The assumption is that, through communicative acts, we enact the meaning of our relationships and experiences (Lindlof, 1995). Further, the objective of qualitative research is “to understand how people choose to express themselves” (Lindlof, 1995, p. 5). Because the goal is to understand people and their behavior, the researchers are less concerned with prediction and the control of variables. Instead, they attempt to preserve the form and content of human interaction and then to analyze its qualities. They want to describe and analyze practices and performances, not to statistically transform them for inferential purposes. An understanding of human relationships is developed by observing and recording communicative practices and performances. The research is typically guided by such questions as these: What is going on in this setting? What communicative actions are being performed here? How do the participants do these performances?

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Researchers who engage in qualitative inquiry have multiple ways in which to approach physician-patient interaction. Given the subjective nature of illness and health, the institutional nature of the setting, and the life-and-death importance of health care, qualitative inquiry can provide rich detail about communicative practices and performances and how they interact in the delivery of care. How do researchers gather data on communicative practices and performances? The data primarily include actual talk, gestures, social action, and recollections and interpretations of actions performed. Usually these data are collected through in-depth interviews (including focus groups), participant observations, recordings of naturally occurring talk, and diaries. The methods used in analyzing the data include but are not limited to metaphor and narrative analysis, discourse analysis, and conversation analysis. These methods are reviewed below, and notable studies that used the methods are identified. The review is not intended to be exhaustive but rather to point to representative examples of qualitative research in health communication. Discourse Analysis. For the most part, discourse analysis focuses on how talk within medical or other settings functions to change, establish, or maintain social or power relationships. Researchers who use discourse analysis (and conversation analysis) are interested in investigating actual speaking practices in medical interactions, and for this purpose they create verbatim transcripts of audio- or videotaped sessions. For example, Fisher and Todd’s (1983) now seminal book, The Social Organization of Doctor-Patient Communication, examined detailed transcripts of various medical interactions to uncover institutional practices that affect medical decision making. In one chapter, Cicourel described how physicians’ and patients’ beliefs conflict with one another. Cicourel examined actual medical talk and the accompanying patient medical records to identify underlying beliefs and sources of misunderstanding. Other examples of discourse-based research include, several studies that examined goals and identities within the context of women’s health care delivery (Beck, 1997; Beck & Ragan, 1992; Smith-Dupre & Beck, 1996). Specifically, Beck (1997) analyzed personal experiences and recorded interactions to discover how “communicative activities work reflexively to enable participants to display and respond to relational and individual identities and goals” (p. 6). Other studies examined misunderstandings between physicians and patients (Cicourel, 1983; Shuy, 1976; West, 1984a, 1984b), the interactional accomplishment of tasks such as information exchange and relational development (Frankel & Beckman, 1982; Shuy, 1983), the constraints imposed by the interview structure on the ability of patients to tell their stories (Mishler, 1984), the opportunities for empathy that exist in medical interviews (Suchman, Markakis, Beckman, & Frankel, 1997), the functioning of interview closings (White, Rosson, Christensen, Hart, & Levinson, 1997), and the medical gaze and autonomy in dialogue (Nessa & Malterud, 1998a, 1998b). Conversational Analysis. Closely related to discourse analysis is the use of conversation analytic techniques. Conversation analysis rests on the assumption that structural features of talk obligate participants to pursue certain courses of action. Talk is transcribed using Gail Jefferson’s transcription conventions (see Morris & Chenail, 1995). The resulting transcriptions provide a means for understanding the timing and placement of utterances in streams of dialogue (Sacks, Schegloff, & Jefferson, 1974). Some conversation analytic research is concerned with developing exemplars of and discovering rules for certain features of talk within medical interactions. Such research typically examines turn-taking rules, question-and-answer sequences, and conversational

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repair attempts, among other conversational phenomena. Talk of the Clinic (Morris & Chenail, 1995) presents many variants within this tradition. For instance, Frankel and Beach, in separate chapters, proposed that the traditional question-and-answer structure of the medical interview constrains participants’ choices for responding. Beach examined the use of “okays” in clinical interactions by identifying the diversity of its usage on a continuum from no difficulties in accomplishing tasks to increasing troubles needing remedy. Other studies have focused on the function of turn-taking and interruptions (West, 1984a, 1984b) and on the opening segments of medical interviews (Frankel and Beckman, 1982). Researchers have also looked at how politeness strategies are used to communicate social distance and influence decision making (Aronsson & Satterlund-Larsson, 1987) and how the presence and use of a computer in the medical exam imposes certain structural changes in physician and patient disclosure (Greatbatch, Heath, Campion, & Luff, 1995). The value of conversation analysis generally lies in its micro-analysis of naturally occurring medical talk (also true of discourse analysis). West and Frankel (1991) argued that conversation analytic techniques can help substantially in determining how certain communicative features of the medical interview can impact patient outcomes. Narrative Analysis. Narrative analysis, along with its various interpretive cousins, focuses on the recounted or observed stories of participants’ experiences. Waitzkin and Britt (1993) defined narrative in the medical context as “story telling that portrays the interrelationships among physical symptoms and the psychologic, social, or cultural context of these symptoms” (p. 1122). Generally, narrative analysis is intended to report on and give voice to individuals as they navigate the medical maze (Frank, 2000). Waitzkin and his colleagues have used narrative analysis in their studies based on the idea that one can expose social and institutional control, discourse features, and ideology that appear peripheral to medicine’s technical tasks (Borges & Waitzkin, 1995; Waitzkin & Britt, 1993). For instance, Waitzkin and Britt (1993) investigated self-destructive behaviors in medical interactions to uncover how various activities are marginalized or interrupted in the traditional medical interview. In doing so, they developed useful criteria for interpreting and analyzing narratives in medical encounters specifically. Mishler’s (1984) research is also representative of narrative analysis, for he used transcribed interactions to unearth two competing stories in the medical context, one involving “the voice of medicine” and the other “the voice of the lifeworld.” As a final example, narrative analysis encompasses using a grounded theory approach to analyze recorded or observed medical interactions. Also referred to as narrative account, the goal is to observe oneself and other participants in order to fashion an account of how understandings emerged during the interaction (Hirschmann, 1999). Studies utilizing this technique have examined how interns learn and unlearn communication skills (Hirschmann, 1999) and identified emergent relational themes in physician-patient dialogue (Walker, Miller-Day, & Arnold, in press). LIMITATIONS OF RESEARCH METHODS

There are a number of fundamental issues with which the field must contend for progress to continue, including the lack of guiding theoretical models, the limitations of current methods, the application of research methods and results to physician training and assessment, and the changing nature of the therapeutic relationship. Primary among these issues is the lack of theoretical models to guide investigators. (See Hall, Roter, & Katz, 1988; Roter, 2000a; Roter & Hall, 1992; and Thompson, 1994,

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1998, for discussions of current models.) This theoretical deficit has contributed to the largely exploratory nature of physician-patient communication studies and the general absence of conceptual framing of results. In response, meta-analytic methods could be applied to uncover common underlying dimensions of this body of research. Many of the coding systems are complementary and could be combined in creative and powerful ways. Furthermore, measurement approaches must be subject to both construct and predictive tests of validity. We would encourage scholars to continue to explore the common denominators among the systems reviewed here and those recently published. In other words, researchers need to be conducting further analysis to identify commonalities and thereby promote creative syntheses as well as the replication of studies and the validation of their findings. Second, methodological limitations are evident in all of the individual systems of interaction analysis. In particular, there has yet to be developed a practical approach to accounting for interaction sequences in our coding systems. A basic assumption has been that summary profiles based on the frequencies of verbal behaviors engaged in during an encounter adequately reflect the communication process. However, as pointed out by Inui and Carter (l985), this is analogous to describing Hamlet as a play in which the principal characters include ghosts, witches, lords, ladies, officers, soldiers, sailors, messengers, and attendants, one of whom is already dead, one of whom dies by drowning, one by poisoned drink, two by poisoned sword, and one by sword and by drink! The schism between qualitative and quantitative methods continues to stymie progress on both fronts. It was not our intent to present a false dichotomy in reporting quantitative and qualitative studies separately. However, we found that most researchers self-identified their study as either quantitative or qualitative in nature. There is a paucity of research that combines qualitative and quantitative methods, and scholars in the field have frequently called for studies that combine methods of both types (Frankel, 2001; Rimal, 2001; Roter & Frankel, 1992; for an exception see Street & Millay, 2001). We need to develop new models of analysis that are integrative rather than parallel or competing. Frankel (2001), in a special issue of Health Communication, advocated combining qualitative and quantitative methods, noting that previous research has demonstrated that a synthesis of techniques for studying physician-patient interaction has better predictive power. He goes on to say, however, that in order to develop new approaches, researchers need to develop standards or conventions for reporting results to minimize the current variation in reporting techniques. New computer technologies and software, but nontraditional thinking even more so, may be the key to these breakthroughs. Along these same lines, the design of research in the field has been quite narrow and almost entirely cross-sectional, with little attention to longitudinality or continuity of care. In the meta-analysis reported earlier, only 40% of the studies did not indicate whether the patient and physician were previously acquainted (Roter et al., 1988). It is very rare for a study to follow the same patient-physician dyad prospectively; we found only two small studies of this kind, one a qualitative analysis (Stewart et al., 1995) and the other using the RIAS system (Van Dulmen et al., 1997). Our current work is moving in this direction; we have analyzed the health maintenance visits of 192 new babies over a 1-year period (for a total of 700 visits) to 30 pediatricians. Surprisingly, we found that a long-standing relationship was not associated with more frequent discussion of psychosocial topics or with greater physician awareness of maternal distress (Wissow et al., 2000). Although we suspect that continuity of care benefits the therapeutic relationship, we really know very little about continuity’s black box. In fact, it may be that there are some negative aspects

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of continuity, such as the presumptuousness of familiarity, labeling, and the need for a fresh perspective. Better specification of the ongoing relationship can be accomplished through more conscientious reporting by investigators and through more creative research designs. Third, investigators have some responsibility to make their research methods and findings accessible to the clinical audience. More intervention studies are needed in which teaching methods are evaluated in light of actual changes in physicians’ communication style and, further, validated against changes in patient outcomes. Those physicians who act as trainers in clinical interviewing courses would benefit from this area of research and could be asked to collaborate with researchers in developing analysis schemes pertinent to quality-of-care assessments. Research on patient interventions is also important and relatively underdeveloped. Many studies that addressed patient interventions found favorable effects. This is clearly an area that needs further elaboration and has tremendous potential for health education trials. FUTURE DIRECTIONS

Health communication researchers need to pay attention to the communicative dynamics in medical relationships under stress. Most of what we know about patient-physician communication has been learned within the context of routine primary care. There is a growing and important body of studies of cancer patients that will help us better understand nonroutine care and the management of life-threatening illness episodes. Incorporation of psychotherapeutic techniques and theories into communication assessment and primary care training will help push forward the field and enable physicians to better deal with the psychosomatic and psychosocial distress experienced by so many primary care patients. In addition to the obvious adaptations of psychotherapy within the context of primary care, new approaches to defining the nature of the therapeutic alliance and the parameters for patient counseling need to be established. Relationships outside of primary care, including emergency room visits and the care provided by specialists, have been largely ignored. Insight into these areas is important not only because a large number of patients remain outside of the primary care system but also because a majority of patients straddle primary and specialty care. Communication researchers must confront emerging ethical and philosophic issues. These include issues that arise where uncertainty is present, such as end-of-life planning, enrollment in clinical trials, treatment of the cognitively impaired, and genetic testing. Insight is needed into the social context of the therapeutic relationship, and attention must be given to gender, socioeconomic status, and ethnicity, particularly the gender, socioeconomic status, and ethnicity of physicians. Of these social context variables, gender has received the most attention within communication studies, although the number of studies is still quite small, probably less than 20 (Roter & Hall, 1992). Virtually unknown are the effects of physician social class, ethnicity, and culture on patients of the same or a different background. Knowledge of the basic social psychology of the therapeutic relationship continues to mature but still shows vulnerable gaps. We cannot yet consistently increase patient understanding and recall, improve participatory decision-making, or optimize adherence and commitment to therapeutic regimens. These are continuing and critical challenges for communication researchers. We must embrace the use of new interactive computer technologies at all levels of our work. Interactive CD-ROMs, web-based programming, and interactive videos are part of the new frontier.

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Stewart, M. A. (1984). What is a successful doctor-patient interview? A study of interactions and outcomes. Social Science and Medicine, 19, 167–175. Stewart, M. A. (1995). Effective physician-patient communication and health outcomes: A review. Canadian Medical Association Journal, 152, 1423–1433. Stewart, M., Brown, J. B., Donner, A., McWhinney, I. R., Oates, J., & Weston, W. (1996). The impact of patient-centered care on patient outcomes in family practice (Final report). London, Ontario: Ministry of Health, Health Services Research. Stewart, M., Brown, J. B., Weston, W. W., McWhinney, I. R., McWilliam, C. L., & Freeman, T. R. (1995). Patient-centered medicine: Transforming the clinical method. Thousand Oaks, CA: Sage. Stiles, W. B. (1992). Describing talk: A taxonomy of verbal response modes. Newbury Park, CA: Sage. Stiles, W. B., Putnam, S. M., & Jacob, M. C. (1982). Verbal exchange structure of initial medical interviews. Health Psychology, 1, 315–336. Stiles, W. B., Putnam, S. M., James, S. A., & Wolf, M. D. (1979). Dimensions of patient and physician roles in medical screening interviews. Social Science and Medicine, 13, 335–341. Stiles, W. B, & White, M. L. (1981). Parent-child interaction in the laboratory: Effects of role, task, and child behavior pathology on verbal response mode use. Journal of Abnormal Child Psychology, 9, 229–241. Street, R. L., & Millay, B. (2001). Analyzing patient participation in medical encounters. Health Communication, 13, 61–74. Suchman, A. L., Markakis, K., Beckman, H. B., & Frankel, R. (1997). A model of empathic communication in the medical interview. Journal of the American Medical Association, 277, 678–682. Szasz, P. S., & Hollender, M. H. (1956). A contribution to the philosophy of medicine: The basic model of the doctor-patient relationship. Archives of Internal Medicine, 97, 585–592. Thompson, T. L. (1994). Interpersonal communication and health care. In M. Knapp & G. R. Miller (Eds.), Handbook of interpersonal communication (pp. 696–725). Thousand Oaks, CA: Sage. Thompson, T. L. (1998). Patient/health professional communication. In L. Jackson & B. K. Duffy (Eds.), Health communication research: A guide to developments and directions (pp. 37–56). Westport, CT: Greenwood. Thompson, T. L. (Ed.). (2001). Coding Provider-Patient Interaction [Special issue]. Health Communication, 13(1). Tuckett, D., Boulton, M., Olson, C., & Williams, A. (1985). Meetings between experts. New York: Tavistock. von Frederichs-Fitzwater, M., & Giligun, X. (2001). Relational control in physician-patient encounters. Health Communication, 13, 75–88. Van Dulmen, A. M., Verhaak, P. F. M., & Bilo, H. J. G. (1997). Shifts in doctor-patient communication during a series of outpatient consultations in non-insulin-dependent diabetes mellitus. Patient Education and Counseling, 30, 227–237. Waitzkin, H., & Britt, T. (1993). Processing narratives of self-destructive behavior in routine medical encounters: Health promotion, disease prevention, and the discourse of health care. Social Science and Medicine, 36, 1121–1136. Walker, K.L., Miller-Day, M., & Arnold, C. L. (in press). Investigating the physician-patient relationship: Examining emerging themes. Health Communication, 14. Wallerstein, N., & Bernstein, E. (1988). Empowerment education: Freire’s ideas adapted to health education. Health Education Quarterly, 15, 379–394. West, C. (1984a). Medical misfires: Mishearings, misgivings, and misunderstandings in physician-patient dialogues. Discourse Processes, 7, 107–134.

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West, C. (1984b). Routine complications: Troubles with talk between doctors and patients. Bloomington, IN: Indiana University Press. West, C., & Frankel, R., (1991). Miscommunication in medicine. In N. Coupland, H. Giles, & J. Wiemann (Eds.), Miscommunication and problematic talk (pp. 166–194). Newbury Park, CA: Sage. White, K. (l988). Physician and professional perspectives. In K. White (Ed.), The task of medicine: Dialogue at Wickenburg (pp. 4–29). Menlo Park, CA: The Henry J. Kaiser Family Foundation. White, J. C, Rosson, C., Christensen, J., Hart, R., & Levinson, W. (1997). Wrapping things up: A qualitative analysis of the closing moment of the medical visit. Patient Education and Counseling, 30, 155–165. Wissow, L. S., Roter, D., Bauman, L. J., Crain, E., Kercsmar, C., Weiss, K., Mitchell, H., & Mohr, B. (1998). Patient provider communication during the emergency department care of children with asthma. Medical Care, 36, 1439–1450. Wissow, L. S., Roter, D., Larson, S., Wang, M. C, Hwang, W. T., & Johnson, R. (2000). Longitudinal pediatric care and discussion of maternal psychosocial issues. Paper presented at the Mental Health Services Research Meetings, Washington, DC.

7 Outcomes of Patient-Provider Interaction Judith Belle Brown, Moira Stewart, and Bridget L. Ryan The University of Western Ontario

Over 30 years ago, Barbara Korsch’s (Korsch, Gozzi, & Francis, 1968) seminal work on patient satisfaction within the domain of the patient-provider encounter set the agenda for research on the interaction between patient-provider communication and patient outcomes. A plethora of studies have since provided substantial evidence on the interaction. These studies have moved beyond issues of patient satisfaction to include evidence on patient physiological outcomes (Greenfield, Kaplan, & Ware, 1985; Kaplan, Greenfield, & Ware, 1989), improvements in patient adherence (Garrity, 1981; Golin, DiMatteo, & Gelberg, 1996), and the impact of poor communication on provider malpractice complaints (Beckman, Markakis, Suchman, & Frankel, 1994; Lester & Smith, 1993). Relevant research findings include serendipitous results from studies not exclusively designed to explore the patient-provider interaction, as described later in this chapter (Headache Study Group, 1986). This chapter examines the relationship between patient-provider interaction and patient and provider outcomes. Patient outcomes include satisfaction, adherence to treatment, and patient health outcomes ranging from self-reporting (e.g., reporting reductions in concern about symptoms) to measures of physiologic status. Provider outcomes include malpractice complaints and the length of the consultation. The findings presented in this chapter were garnered from both qualitative and quantitative studies. A consistent message from studies using different methods enhances credibility, and the importance of multimethod approaches is discussed in the section on developing a research agenda for the 21st century. Research findings lack relevance if they are not directly applicable to the clinical setting. Findings must be timely, accessible, and make intuitive sense to the practitioner. A central challenge for researchers is discovering how study findings can best be disseminated

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and ultimately improve patient and provider outcomes. The final section of this chapter discusses the implications of the research findings for clinical practice. Although this chapter examines specific outcomes connected to patient-provider interaction, what will quickly become apparent to the reader are the multiple and equally dynamic interfaces among the various outcomes. For example, patient satisfaction intersects with health outcomes, and the perennial concern about consultation length is interwoven with both patient satisfaction and health outcomes. Furthermore, the introduction of managed care adds a whole new dimension to the research on patient-provider interaction. Thus, research on patient-provider interaction and outcomes is influenced by many contexts, including the patients, the providers, and the specific environments in which the interaction transpires. Nonetheless, due to time and fiscal restraints, investigators have been required to focus their research narrowly. As a result, they have concentrated on specific aspects of a single patient-provider interaction, neglecting the evolution of interactions over time. This limitation poses challenges for future research as we continue to explore the synergistic interchange between patients and their providers. PATIENT OUTCOMES Satisfaction

Historically, patient satisfaction has been an important outcome. In a review of satisfaction research, Di Palo (1997) noted that patient satisfaction studies date back almost half a century. Much of the early research into patient satisfaction was part of a broad effort to investigate people’s satisfaction with different areas of their lives. In the 1960s and 1970s, medical sociology grew into a separate subfield, and so too did research into patient satisfaction. Unlike other sociological research, sociodemographic variables could not account for much of the variation in patient satisfaction (Fox & Storms, 1981; Pascoe, 1983; Ware, Davies-Avery, & Stewart, 1978). The most consistent relationships were found between patient satisfaction and age and sex, with increased satisfaction being associated with being older and female. Even in the cases of age and sex, the relationship with satisfaction depended on which aspect of medical care was being measured and the amount of variation accounted for was small (Pascoe, 1983). As noted previously, Korsch in the late sixties reported that there were a number of communication barriers between pediatricians and mothers that contributed significantly to dissatisfaction. These included lack of warmth and friendliness on the part of the physician, failure to take into account the parent’s concerns about and expectations for the medical visit, lack of clear-cut explanations of the diagnosis and the causation of illness, and the use of medical jargon (Korsch et al., 1968). Discovery of these causes of dissatisfaction led to greater interest in the patient-provider interaction and its effect on satisfaction. During the 1980s, studies on patient satisfaction increasingly treated patient satisfaction as multidimensional and included the patient’s assessment of the physician’s technical competence as well as the quality of the patient-physician interaction. Hall and Dornan (1988) conducted a meta-analysis of 107 studies on patient satisfaction and uncovered 12 dimensions of patient satisfaction. These included overall satisfaction; aspects relating to the provider, such as humanness and competence; and aspects relating to the system, such as cost, physical facilities, and waiting time. The investigators found that patients ranked aspects related to the provider, such as humanness, technical quality, and overall quality of medical care, as the most important. Aspects related to the system and not the provider were ranked as least important.

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A 1997 collaborative study (Roter et al.), representing 13 sites in North America also described interaction patterns in primary care that were associated with patient satisfaction. The researchers found that the pattern associated with the highest level of satisfaction included communication that was balanced between the psychosocial and the biomedical; the pattern associated with the next level of satisfaction was labeled a consumerist pattern (the patients ask questions and physicians provide a large amount of information). This study emphasized that a communication approach that incorporates both psychosocial and biomedical topics is preferred by patients. In addition, research by S. J. Williams and Calnan (1991) identified intangible aspects of the patient-provider relationship as more important to patient satisfaction than issues such as access and availability, providing further evidence that communication is an essential component of the patient-provider interaction (M. Stewart et al., 1995). Specifically, for older patients, the provider’s interpersonal, affective style may have a larger influence on satisfaction than the actual subjects discussed during a visit (Greene, Adelman, Friedman, & Charon, 1994). Great value is placed on “caring” rather than “curing” (Linn et al., 1982). Thus, having a practitioner who understands their condition and whom they can turn to and rely on is very important. In Greene, Adelman, et al.’s 1994 study focusing on older patients, physician support and question asking in response to patient-raised topics was found to be positively correlated with patient satisfaction. The study also identified a trend indicating a negative correlation between patient question asking on patient-raised topics and satisfaction. The researchers hypothesized that older patients have been socialized to respect and not challenge the provider’s medical expertise and therefore have the expectation that the physician should be asking the questions. The patient is more comfortable answering questions than asking them and therefore less satisfied when having to do so during a medical encounter. The importance of continuity of care to patient satisfaction was highlighted in a review by Dietrich and Marton (1982). They concluded that continuity of care increased satisfaction for both patients and staff. This finding was consistent across various populations. Further, continuity of care can positively influence the attitudes of patients about the quality of care that they receive. Wasson et al. (1984) found that patients who experienced discontinuous care were less satisfied with their medical care and believed that their providers were not as knowledgeable or thorough. In another study, Weiss and Blustein (1996) found that long-standing patient-provider ties fostered less expensive, less intensive medical care. However, continuity can be disrupted when patients are dissatisfied. Researchers have examined patients’ decision to switch to different providers as a method of demonstrating dissatisfaction. A number of studies showed a relationship between dissatisfaction and the intention to switch services (Pascoe, 1983). In a study of older Americans, Weiss and Blustein (1996) found that dissatisfaction served as an incentive for change in provider for a small but significant portion (19.6%) of the subset of 251 respondents who had been seeing their care provider for one year or less. The most common reasons for dissatisfaction with a provider were “attitude or personality” (28.7%) and ineffectiveness of treatment (24.3%). The provider’s awareness of the patient’s expectations during a consultation is vital to achieve effective communication (S. Williams, Weinman, Dale, & Newman, 1995). Therefore, when the quality of communication with the provider is rated highly, patients are more likely to be satisfied with their medical care (Bertakis, as cited in Williams et al., 1995). The expectations of the practitioner are also related to patient satisfaction. For example, physician expectations as to whether an older patient would improve in the next

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2 months were found to be a significant predictor of patient satisfaction. Those patients whom the physician expected to get better were more satisfied with their care (Linn, Linn, & Stein, 1982). In summary, research has demonstrated that the key elements of patient-provider communication influencing satisfaction include a caring and understanding manner on the part of the health care provider, medical competence, a balanced inquiry into psychosocial and biomedical concerns, continuity of the patient-provider relationship, and the expression of patient and provider expectations. These findings have implications for both training and clinical practice, and these implications are elaborated on in the final section. Adherence

Recommendations for treatment and/or management make up a prominent component of the patient-provider interaction. As a result, patient-provider communication and patient adherence to treatment regimens are inextricably linked. Patient-provider communication has been identified as the most important factor in determining patient adherence to treatment in a number of studies with different populations (Garrity, 1981; Kjellgren, Ahlner, & Saljo, 1995; Ley, 1982; McLane, Zyzanski, & Flocke, 1995; Svarstad, 1985). As Salzman (1995) noted, successful communication is essential to patient adherence if clinicians are going to “help and encourage patients to participate fully in an agreed upon regimen in an informed and intelligent manner” (p. 21). Numerous articles (Blackwell, 1996; Garrity, 1981; Golin et al., 1996; Kjellgren et al., 1995; Ley, 1982, 1985; Roter, 1989; Sanson-Fisher, Campbell, Redman, & Hennrikus, 1989; Sbarbaro, 1990; Squier, 1990; Svarstad, 1985; B. M. Wilson, 1995) have summarized the multiple dimensions of the patient-provider interaction that are linked with patient adherence to treatment regimens. From this literature, four inter-related issues are evident: information exchange or patient education; finding common ground concerning expectations; the patient’s active role in the interaction; and the necessity of the practitioner’s positive affect, empathy and encouragement. Each of these issues is discussed below, with particular attention to the challenges of adherence for older patients. As for the first issue, patient education significantly influences whether a patient adheres to a treatment regimen. A key factor closely linked to adherence is the clinician’s role as an educator who must ensure that the patient understands and remembers the treatment regimen (Garrity, 1981; Kjellgren et al., 1995; Ley, 1982; Svarstad, 1985). Clear, concise, and explicit physician instructions have been associated with higher patient adherence (Garrity, 1981). Replete in the literature are communication guides or techniques to increase adherence, such as providing simple directions, repeating instructions, explicitly categorizing the information given, providing instructions in a clear and simple manner, providing concrete and specific directions, checking for understanding, and using different communication strategies (e.g., diagrams, videos, written information) (Kjellgren et al., 1995; Ley, 1985; Sanson-Fisher et al., 1989; Svarstad, 1985). In addition, information transfer can be improved by providing training or coaching to patients or providers (Ley, 1982). Although education is important for all patients, older patients face particular challenges, in part because of increased comorbidity. Adherence has been reported by health care providers as one of the more difficult problems they face when treating chronically ill, older patients (Coe, Prendergast, & Psathas, 1984). Thus, encouraging adherence to treatment is an important aspect of the older patient–provider interaction. As with other

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populations, research has identified communication as the most important factor in determining adherence in older patients (McLane et al., 1995). The number and dosing of medications have been found to be major stumbling blocks to adherence in the elderly (Anderson, Reed, & Kirk, 1982). Salzman (1995) found that adherence decreased among the elderly as the number of drugs prescribed and number of doses required per day increased. Lack of knowledge about a medication and its purpose has been associated with lower adherence (Salzman, 1995). Also, less time spent with elderly patients discussing these issues was one of the strongest predictors of lower adherence (McLane et al., 1995). Providers have been advised to assist medication adherence by taking the time to fully describe the medication and explain why it is being prescribed (Anderson et al., 1982; Garrity & Lawson, 1989; Salzman, 1995). The research clearly supports the importance of appropriate information exchange and education to improving patients’ adherence to treatment. However, information exchange and education alone are not sufficient to ensure patient adherence (Blackwell, 1996). The second major issue reported in the literature on patient-provider interaction and patient adherence is the goal of establishing mutual expectations for treatment. Discordance between patient and provider expectations may decrease adherence (Blackwell, 1996; Garrity, 1981; Golin et al., 1996). Thus, it is imperative that the patient and provider find common ground concerning treatment goals and regimens (Sanson-Fisher et al., 1989). Finding common ground increases the patient’s responsibility for the treatment decision and therefore increases the likelihood of adherence to the treatment regimen (Blackwell, 1996; Garrity, 1981; Golin et al., 1996). The third major issue is the patient’s role in the treatment decision. Accepting some responsibility for the treatment was found to be a condition necessary for maximal adherence (Garrity, 1981; Golin et al., 1996; B. M. Wilson, 1995). For the most part, patients who assume an active role in their care ask more questions and participate in making decisions about the treatment protocol (Garrity, 1981). Although active patients appear to demonstrate greater adherence, research has shown that not all patients desire the same level of involvement in their care. For example, a patient may be very active in obtaining information about treatment options but may still want the practitioner to decide on the final treatment protocol (Golin et al., 1996). It is important for the patient and the provider to determine together what the patient’s role will be. A study by Anderson et al. (1982) found that a discussion about shared responsibility and roles between the patient and the provider was associated with adherence in elderly patients. Although patients may vary in the amount of involvement they wish to have, the research suggests that some level of patient involvement is necessary for patient adherence. Therefore, physicians are encouraged to develop strategies, such as finding common ground and partnership building, that enhance the opportunities for patient involvement in interactions. A patient’s comfort level with participating in the interaction may depend on the fourth issue identified in the literature—the clinician’s ability to empathize with, understand, and encourage the patient. Positive affect appears to be associated with increased levels of patient adherence (Garrity, 1981; Kjellgren et al., 1995). Emotional support (Garrity, 1981), friendliness (Kjellgren et al., 1995), empathy (Squier, 1990), and partnership building (Roter, 1989; Sbarbaro, 1990) all appear to be important factors in improving patient’s adherence to treatment protocols. A study by Coe et al. (1984) stressed the importance of physicians’ understanding their elderly patients’ context for improving adherence. For example, if physicians understood their patients’ daily schedules, living arrangements, and possible cognitive or physical barriers to recall and adherence, they could adapt the timing of the medications and the

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manner in which the medication and dosage is explained. This strategy reflects a patientcentered approach to medical care, with a strong emphasis on finding common ground between patients and physicians (M. A. Stewart, 1995). It is noteworthy that many of the provider characteristics associated with better adherence have also been associated with patient satisfaction. A study of older patients found that the more satisfied the patient, the better the chance that the older patient would adhere to the treatment regimen (Greene, Majerovitz, Adelman, & Rizzo, 1994; Linn et al., 1982). Linn et al. (1982), upon finding that physician expectations were related to adherence, speculated that the physicians’ expectations of the older patient were conveyed (verbally or nonverbally) to the patient and that this affected both adherence and satisfaction. For example, if a physician had negative expectations, the patient was less satisfied with the visit, put little faith in the physician’s suggested treatment, and thus did not follow the treatment regimen. In summary, four central issues related to the patient-provider interaction have been identified as playing an important role in patient adherence to treatment protocols. First, the patient-provider relationship provides the context within which information regarding the treatment regimen is communicated. Many communication strategies have been shown to enhance this transfer of information. Second, the patient and the provider must work toward finding common ground concerning treatment expectations. Adherence with the treatment regimen is enhanced when the patient and provider determine a treatment that meets both their needs and expectations. Third, patients should be encouraged to play an active role in gathering information about treatment options and in the actual decision-making process. Finally, positive affect on the part of the provider, including empathy and encouragement, further enhances the patient’s adherence to treatment protocols. This requires discussing aspects of a treatment regimen, such as medication scheduling, within the context of the patient’s particular life situation. Health Outcomes

A literature review published on this topic in 1995 found 21 studies relevant to patientprovider interaction and patient health outcomes (M. A. Stewart). An update of this review using the same MEDLINE search strategy for the years 1993 to 1999 uncovered three new relevant articles (“A Controlled Trial,” 1995; Kinnersley, Stott, Peters, & Harvey, 1999; Selfe, Matthews, & Stones, 1998). The first article (“A Controlled Trial,” 1995), by the SUPPORT principal investigators, described an intervention to improve end-of-life care in five U.S. teaching hospitals. The intervention included increasing the information physicians were given about the condition of the patients and assigning a nurse the responsibility of eliciting preferences, improving the understanding of outcomes, encouraging attention to pain, and facilitating patientphysician communication. The intervention did not demonstrate a positive influence on a variety of outcomes, including the patients’ level of pain. The study by Selfe et al. (1998) examined the influence of the initial consultation on the patients’ recovery from chronic pelvic pain. The authors used a visual analogue scale to examine the physician’s understanding of the patient’s problem, the patient’s willingness to accept the physician’s explanation or advice, and the patient’s perception of the physician’s ease during the consultation. They found that the patients’ satisfaction with the initial consultation was associated with complete recovery at follow-up 6 months later.

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TABLE 7.1

Elements of Effective History-taking Element Provider Asks many questions about the patient’s understanding of the problem, concerns, and expectations and about his or her perception of the impact of the problem on function Asks the patient about his or her feelings Shows support and empathy Patient Expresses him- or herself fully, especially with regard to feelings, opinions, and information

Perceives that a full discussion of the problem has taken place Perceives that the physician has understood problem and was at ease during consultation

Patient Outcomes Affected Patient anxiety (Evans et al., 1987); symptom resolution (Heszen-Klemens & Lapinska, 1984) Psychologic distress (Roter et al., 1995) Psychologic distress (Roter et al., 1995); symptom resolution (Heszen-Klemens & Lapinska, 1984) Role limitation and physical limitation (Greenfield et al., 1985); health status, functional status, and blood pressure (Kaplan et al., 1989; Orth et al., 1987) Symptom resolution (Headache Study Group, 1986) Symptom resolution (Selfe et al., 1998)

The third study, by Kinnersley et al. (1999), explored whether, for patients presenting for new episodes of care, the physician’s consulting style, specifically the patient-centeredness of the consultation, was related to five outcomes. They found that the patient-centeredness of the consultation was related to patients’ satisfaction but not to patient-physician agreement, resolution of symptoms, resolution of concerns, or functional health status. These three studies, together with the other studies covered in the published review, can be summarized as follows. With regard to history taking, four randomized trials and six analytic studies were reviewed, of which eight obtained significant positive findings. Those aspects of history taking that were found to have a significant association with patient outcomes are summarized in Table 7.1. In general, the important aspects seem to be the physician’s asking questions about the patient’s illness experience and showing support as well as the patient’s fully expressing him- or herself. In the studies that examined discussion of the management plan, seven of the eight randomized, controlled trials and six of the eight analytic studies found significant correlations between communication interventions or variables and patient health outcomes. The aspects of communication relevant to discussion of the management plan that were found to significantly influence health outcomes are summarized in Table 7.2. These focus on information sharing, mutual decision-making, and patient-physician agreement. Five additional studies had findings relevant to other aspects of communication, such as a positive style (Thomas, 1978, 1987), a directive style (Savage & Armstrong, 1990), patient knowledge of instructions (Hulka, Kupper, Cassel, & Mayo, 1975), and meeting multifaceted in-patient support and information needs (“A Controlled Trial,” 1995). Of these, four studies showed no significant association between communication and patient health outcomes. Therefore, synthesizing Tables 7.1 and 7.2 leads to the conclusion that patient health outcomes are affected by (a) providers’ helping patients to fully describe their experience,

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Elements of Effective Discussion of the Management Plan Element Patient is encouraged to ask more

Patient is successful at obtaining information

Patient is provided with information programs and packages Provider gives clear information along with emotional support

Provider is willing to share decision making Physician and patient agree about the nature of the problem and the need for follow-up

Patient Outcomes Affected Anxiety (Thompson et al., 1990); role limitation and physical limitation (Greenfield et al., 1985; Greenfield et al., 1988; Kaplan et al., 1989) Functional status (Greenfield et al., 1985, Kaplan et al., 1989); physiologic status (Greenfield et al., 1988; Kaplan et al., 1989) Pain (Egbert et al., 1964); function (Johnson et al., 1988); mood and anxiety (Rainey, 1985) Psychologic distress, (Roter et al., 1995); symptom resolution (Heszen-Klemens & Lapinska, 1984); blood pressure (Orth et al., 1987) Patient anxiety (Fallowfield et al., 1990) Problem resolution (Starfield et al., 1981); symptom resolution (Bass et al., 1986)

(b) providers’ expressing empathy and support, (c) providers’ giving patients clear information, and (d) shared decision-making leading to agreement on the course of action. The reader will note a similarity between these key dimensions and those important for patient adherence. Five studies deserve special mention because of their design and unique findings. The Headache Study Group (1986) designed an analytic cohort study in family practice to answer the question, What variables predict recovery from headaches after a 1-year followup period? Characteristics of the patient; the interaction between the physician and the patient; and the symptoms, signs, and treatment were assessed during the first 6 weeks of the year. Recovery from headache was assessed at the end of the year. Those patients who recovered from the headaches at the end of the year were 3.4 times more likely to have perceived that their headache had been fully discussed at the initial visit than patients who had not recovered. This was the most important predicator of recovery from headache among the myriad clinical, treatment, and patient variables. Two studies of supportive care that affected “hard” health outcomes are also worthy of consideration. Spiegel, Bloom, Kraemer, and Gottheil (1989) conducted a randomized, controlled trial of supportive expressive group therapy for women with metastatic breast cancer. Fifty women were randomized to the group intervention, which lasted 1 year. After 4 years, all of the patients in the control group had died and a third of the treatment group were alive. Fawzy, Fawzy, and Hyun (1994) randomized 38 patients with newly diagnosed malignant melanoma to meet in groups for six sessions encompassing support and structured learning. Outcome measures, which were more positive in the intervention group than in the control group, included immune function, coping, anxiety, and depression. In addition, after 5 years, the survival rate in the study group was significantly higher than in the control group. Patients’ positive perceptions about patient-provider interaction have been found to influence not only patient outcomes but other health care outcomes as well. For example, Redelmeier, Molin, and Tibshirani (1995) conducted a randomized, controlled trial to examine compassionate care for the homeless. This care was provided by well-trained

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volunteers who listened attentively to and shared common experiences with patients who visited emergency departments. The researchers found that the homeless patients who were randomly assigned to receive compassionate care were significantly more satisfied and took significantly longer to return for another visit than patients receiving usual care. The researchers suggested that compassionate care may reinforce the reassurance being offered to the patient and promote faith in the system. With increased trust there may be a decrease in patients’ need for a second opinion, leading to a reduction in the use of overtaxed emergency rooms. In a recent study with an analytic cohort design, M. Stewart et al. (2000) sought to test the association between health outcomes and the patient-centeredness of an interaction. Patient-centeredness was measured by whether the physicians had elicited the patient’s experience of the illness as well as information about the disease, explored whole-person issues, and found common ground with the patient about the nature of the problem and the management plan. The study, which related patient-centered scores of audiotaped interactions (of family physicians and their patients) with health outcomes, revealed an important intermediary variable: the patient’s perception that the visit was patient-centered. This finding suggests that patient perceptions are an important step in the pathway connecting the patient-provider interaction to patient health and other health care outcomes, such as referral and diagnostic testing (M. Stewart et al., 2000). It also has important implications for managed care policies regarding patient-provider interaction. PROVIDER OUTCOMES Malpractice Claims

Patient dissatisfaction and poor communication between patients and health care providers may lead patients to file malpractice suits against their providers (Levinson, 1994). A number of studies have shown an association between poor communication and malpractice claims (Beckman et al., 1994; Hickson, Clayton, Githens, & Sloan, 1992; Hickson et al., 1994; Lester & Smith, 1993; Vincent, Young, & Phillips, 1994). The communication problems most frequently identified are inadequate explanation of diagnosis or treatment (Beckman et al., 1994; Hickson et al., 1992; Hickson et al., 1994; Vincent et al., 1994) and patients’ feeling ignored (Hickson et al., 1992; Hickson et al., 1994; Vincent et al., 1994). Other communication problems include physicians’ misleading patients (M. Stewart et al., 1995), physicians’ not understanding patient and family perspectives (Beckman et al., 1994), physicians’ devaluing patient and family views (Beckman et al., 1994), physicians’ desertion of patients (Beckman et al., 1994), and patients’ feeling rushed (Hickson et al., 1994). Using an experimental design, Lester and Smith (1993) demonstrated that negative physician communication behaviors—such as no eye contact; no smiling; no praise; no friendly physical contact; harsh, clipped, critical tones; minimal exchange of information; no acknowledgement of verbalizations; no reflection of affect; and a relatively short period of contact—could be risk factors for malpractice suits. Their findings suggest that positive communication behaviors—such as eye contact, friendly tone of voice, good exchange of information, smiling, appropriate physical contact (e.g., shaking hands), self-disclosure, acknowledgement of verbalizations, reflections of affect, appropriate praise, and a relatively long period of contact—decrease the likelihood of malpractice suits. Other studies have also indicated that good communication between patients and providers helps prevent malpractice claims (Penchansky & Macnee, 1994; Shapiro et al., 1989).

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In contrast to the studies cited above, the study by Levinson, Roter, Mullooly, Dull, and Frankel (1997) was unique in two ways: the researchers investigated the relationship between poor communication and malpractice claims through direct observation and identified specific communication behaviors that could potentially reduce the risk of litigation and they compared communication behaviors related to malpractice claims within different physician specialties. The authors identified communication behaviors that were characteristic of “claim” and “no-claim” primary care physicians. No-claim primary care physicians had longer visits and displayed more humor and laughter. They also provided more statements to help orient the patients to their actions or plan (e.g., “First I will examine you, then you will have tests”). Finally, the physicians used more facilitating comments, elicited patients’ opinions, clarified patients’ understanding, and addressed patient prompts. Interestingly, the study did not find communicative behaviors that distinguished between claims and no-claims surgeons. The authors suggested that patients’ expectations may be different when they visit surgeons or that other factors such as negligence and surgical complications may be more important than the communication variables measured. However, it may also be that communication between patients and their surgeons is more important when the surgeons must break bad news or inform patients of poor surgical outcomes. Based on the studies cited, it appears that a breakdown in communication often triggers a complaint about clinical care that could lead to a malpractice claim. This finding has implications for both future research and clinical practice. Time

The majority of research on how time impacts the patient-provider interaction has been conducted in the primary care setting, and although the length of consultation varies from country to country, the debate on how much time is enough remains persistent in the medical community (A. Wilson, 1991). The hypothesis that the “ability to communicate effectively may be largely a function of the time available for the consultation” (Roland, Bartholomew, Courtenay, Morris, & Morrell, 1986, p. 874) is at the center of the controversy, and there exist studies that support each side. After reviewing the relevant findings, this section concludes with a discussion of the methodological challenges in studying the relationship between patient-provider interaction and time. The following studies provide evidence to support the belief that optimal patientprovider interactions do not result in longer office visits. Marvel, Doherty, and Weiner’s (1998) study compared the interviews of exemplary family physicians (physicians who had received postgraduate training in family therapy) and those of community family physicians (physicians who had no additional training). The researchers found no difference in the length of the office visits between the two physician groups, but the exemplary physicians engaged the patients in more in-depth interactions, including exploration of psychosocial issues and collaboration with patients. Arborelius and Bremberg (1992) found that positive consultations (i.e., consultations that left physician and patient with a positive impression) took less time than negative consultations (those that left both parties with a negative impression). Furthermore, in the positive consultations, more time was devoted to exploring patient ideas and concerns. This finding is consistent with the results of Marvel et al.’s (1998) study. Greenfield, Kaplan, Ware, Yano, and Frank (1988) observed that, although the total volume of conversation

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between experimental group patients and their physicians was greater than for the control group, there was no corresponding change in the length of the visit. The intervention (to improve the information-seeking skills of the patient) produced a more active interchange but not a longer visit. Again, this is in concert with Marvel et al.’s (1998) findings on enhanced patient collaboration. Henbest and Fehrsen (1992) found that the most patientcentered consultations did not take longer than those that were less patient-centered. They stated that the “frequent assumption that it takes longer to conduct a patient-centered consultation was not supported. Lack of time cannot be legitimately offered as an excuse for not conducting patient-centered consultations” (p. 316). In contrast, other studies suggest that optimal patient-provider interaction requires longer consultations (Ferris, 1998; Hornberger, Thorn, & MaCurdy, 1997; Howie, Porter, Heaney, & Hopton, 1991; Hull & Hull, 1984; Jacobson, Wilkinson, & Owen, 1994; Marvel, 1993; Ridsdale, Morgan, & Morris, 1992; Verby, Holden, & Davis, 1979; Westcott, 1977). Ferris (1998) found that longer visits were associated with the provision of counselling and preventive services such as vaccination. Hornberger et al. (1997) concluded that it is not possible to meet the expectations of the provider, the patient, and the many and varied professional organizations generating clinical practice guidelines without increasing the length of the consultations. Howie et al. (1991) found that, for 17 of 33 questions asked, significantly higher proportions of patients gave responses that favored long consultations. The question “Did the doctor give you a chance to say what was really on your mind?” was positively associated with length of visit. They concluded that “the advantages of longer consultations do not simply lie in more services being provided but in a larger proportion of the needs which have been recognized being followed up by the doctor” (p. 54). In a study examining the lengthening of booking intervals from 5 to 10 minutes, M. Williams and Neal (1998) found that patients reported greater satisfaction with the longer consultation and were better able to understand and cope with their illnesses. A discussion of the impact of consultation length on patient-provider interaction would not be complete without the inclusion of patient satisfaction. Some studies have found that a decline in patient satisfaction is associated with longer visits (Hornberger et al., 1997). In contrast, an association between length of visit, patient volume, and patient satisfaction was found by Zyzanski, Stange, Langa, and Flocke (1998). Lower patient satisfaction was more common among the patients of high-volume physicians, whose visits were 30% shorter than those of low-volume physicians. Patients of high-volume physicians reported less follow-up on patient problems, less attention to patient responses, and less adequate explanations provided. In addition, high-volume physicians had significantly fewer patients who were up to date on the recommended guidelines for screening, counselling, and immunization. Thus, the authors suggested that increases in efficiency may occur at the expense of patient satisfaction and adequate preventive care and have a negative impact on the patient-provider interaction. Using the same data set, Gross, Zyzanski, Borawski, Cebul, and Stange (1998) identified two interaction strategies that would improve patient satisfaction. First, providers need to allow a brief period of time to “chat” about topics of a nonmedical nature. This kind of discussion, they suggested, may help the patient connect with the provider. Secondly, physicians must allow sufficient time to provide patients with feedback on clinical findings. Also using the same rich data set, Stange et al. (1998) observed that the mean length of the patient-physician visit was 10 minutes. Patients reported high levels of satisfaction with their provider and perceived that their expectations had been met. Taken together, these findings suggest that a 10-minute encounter is long enough to satisfy patients and meet their expectations.

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Certain factors, including patient and physician characteristics, may increase or decrease the consultation length. First, some topics such as alcohol abuse (Arborelius & Thakker, 1995) and stress (Russell & Roter, 1993) may require more time due to their complex nature. Also, patient characteristics such as socioeconomic status (Bain, 1979), age (Hull & Hull, 1984; Pereles & Russell, 1996; Westcott, 1977) and need for an interpreter (Rivadenyra, Elderkin-Thompson, Silver, & Waitzkin, 2000) may necessitate longer visits. Physician factors that may result in shorter visits include lack of time available for consultations (Herman, 1997) and lack of adequate physician remuneration for longer consultations (Howie et al., 1991; Pereles & Russell, 1996; Wirtzer, 1993). In conclusion, the examination of consultation length faces several methodological challenges. Securing a representative sample may be difficult, as the clinicians likely to agree to participate in studies on consultation length may reflect a biased sample. The greatest challenge, however, may be finding an effective method of measuring consultation length. Patient and provider self-reports of consultation length may be inaccurate. Also, determining the mean length of patient visits by dividing the time a provider spends in the office or clinic by the number of patients seen lacks precision (A. Wilson, 1991). The provider may spend considerable time on charting or administrative activities. The most accurate way of determining the consultation length is to observe the actual encounter between the patient and provider (A. Wilson, 1991), either directly (e.g., sitting in on the interview or viewing it through a one-way mirror) or by audio- or videotaping the encounter (which is less intrusive and more amenable to subsequent analysis). However, observation, no matter what the method, tends to be labor intensive and expensive. Another important issue is the context of the encounter. Context, in this sense, refers to outpatient versus inpatient care as well as the provider’s specific discipline. The clinical setting may dictate the amount of time available for the interaction. Some health care providers, such as family physicians, are in a position to build on the interaction over multiple encounters. This suggests that future research needs to examine series of consultations as well as individual encounters (Gray, 1998). The relationship between patient-provider interaction and consultation length remains a controversial issue. More detailed and rigorous studies, such as those by Gross et al. (1998), Zyzanski et al. (1998), and Stange et al. (1998), will serve to settle the question. A RESEARCH AGENDA FOR THE 21ST CENTURY

Research on the impact of patient-provider interaction on both patient and provider outcomes has an opportunity to make important contributions. We make four recommendations regarding future research on this topic. First, a variety of methods need to be employed to maximize research credibility. Qualitative and quantitative methods both build on and inform each other, as demonstrated later in this section. Second, more intervention studies are needed to determine the interconnections between patient-provider interaction and outcomes for both patients and providers. Third, researchers need to develop and refine assessment tools for exploring patient-provider interaction, increasing the rigor of this area of inquiry. Finally, research on patient-provider interaction and outcomes must take into account the confusion and tension surrounding managed care. Future research should also attempt to determine what outcomes are most relevant for patient health and well-being as well as patient care. In doing this, it will need to distinguish between outcomes favored by patients and those endorsed by providers. Of utmost importance will be the establishment of mutually agreed upon outcomes. Finding common ground on these outcomes will guide not only further research but clinical practice

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as well. When the most efficacious treatment is inconsistent with the needs of the patient, clinical wisdom may override research evidence. For example, if a physician and a patient with type 2 diabetes rigidly adhere to effective intervention guidelines in order to lower the patient’s HbA1 C, their interaction might be compromised as a side effect, putting their long-term relationship in jeopardy. In other words, a short-term gain might preclude success in the long run. This is where the interface between qualitative and quantitative methods is essential. The following examples demonstrate the research potential when both methods are brought together. By conducting in-depth interviews with patients regarding their providers’ communication style while providing information on smoking cessation, we may learn about the patients’ experience. Our new understanding can then be used to direct the development of instruments to ascertain patients’ satisfaction with health promotion strategies targeted at smoking cessation and also ascertain the patients’ ultimate success when these strategies are used. Alternatively, quantitative studies may identify a correlation between certain patient-provider characteristics that encourage adherence to a specific medication regimen. However, a qualitative approach (interviews or focus groups) may be necessary to isolate the specific activities or actions of the providers that enhanced the patients’ adherence. Recent qualitative studies (Britten, Stevenson, Barry, Barber, & Bradley, 2000; Salmon, Peters, & Stanley 1999) provide examples of how this research approach may shed light on difficult and complex issues and ultimately generate hypotheses for future exploration. For example, Britten et al.’s (2000) study on the misunderstanding between patients and physicians regarding the decision-making process used in the family practice setting highlights specific issues that could be explored via quantitative methods. One specific finding was that patients and physicians often disagree about the attribution of side effects. Future research could explore not only how frequently this occurs but what factors significantly ameliorate this problem. The study by Salmon et al. (1999) on patients’ perceptions of medical explanations of somatization disorders also illustrates how qualitative findings may provide insights of value for designing future quantitative studies of difficult patient problems. Their finding that patients with somatization disorders are both satisfied and empowered when their physicians’ explanations of the problems are perceived as tangible, exculpating, and involving could guide the development of an intervention study on communication and subsequent patient outcomes. Often studies are conducted retrospectively to investigate the impact of patient-provider communication on patient outcomes. Future research needs to employ a prospective approach, such as that used by Golin et al. (2000) to investigate the relationship between patient-physician communication and the desire for resuscitation. As suggested by this study, qualitative methods to examine the dynamics that alter patients’ communication and potential outcomes are also needed. McWilliam, Brown, and Stewart’s (2000) study on breast cancer is an example of how qualitative findings can provide important information and direction in the development of intervention studies designed to change provider styles of communication. In this study, breast cancer patients identified four dimensions as crucial to their communication with their physicians, particularly around the time of first diagnosis or a diagnosis of recurrence. First, they desired their physicians to spend time with them, exhibit a caring attitude, and engender hope. Second, they placed a high value on information sharing. As breast cancer patients, they felt an urgent need for accurate and detailed information to help them make decisions. However, they wanted to discuss the information with a trusted physician to assess its relevance and meaning for their lives. Third, they wanted to regain control over

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their lives. Here, as in previously described studies, it was important for the physicians to nurture the patients’ first attempts to care for themselves. Finally, they wanted to work together with their physicians, as well as with family and friends, to reknit their lives. These findings were used in the development of a randomized, controlled trial to examine an innovative continuing medical education program on communication with breast cancer patients (the goal of the program was to change provider behavior and hence patient outcomes). In conclusion, future research studies need to employ a variety of methods to optimize the investigation of patient-provider interaction and outcomes. With regard to the need to develop new measures of communication, Boon and Stewart (1998) published a comprehensive review of patient-physician communication assessment instruments cited in the literature from 1986 to 1996. Forty-four instruments were obtained and evaluated; 16 were designed for assessing and teaching patient-physician communication (medical education category) and 28 were designed for research purposes (research category). The instruments ranged from self-report measures to detailed and labor-intensive scoring procedures. The authors found that few instruments had been widely used. Many had never been demonstrated to be reliable or valid, making it difficult to compare the findings of different studies. They suggested that researchers should work collectively to evaluate data sets using different instruments in order to validate the measures. Also, very few instruments take into account nonverbal communication, despite research suggesting that the ability of providers to express emotions nonverbally and decode their patients’ nonverbal cues is associated with patient satisfaction and appointment keeping (DiMatteo, Hays, & Prince, 1986; DiMatteo, Taranta, Friedman, & Prince, 1980). Despite a plethora of available measures, there still appears to be no instrument that captures the dynamic interchange or the subtle nuances that characterize the patientprovider interaction. This remains a rich area for research. As managed care continues to dictate the payment arrangements for patient care, future research must include systematic inquiry into the outcomes of patient-provider interaction, including such issues as patients’ trust in their providers and the providers’ commitment to their patients’ well-being. (Mechanic & Schlesinger, 1996). Also, because managed care organizations place conflicting demands on providers (e.g., expecting them to see more patients while ensuring continued patient satisfaction), future research that combines qualitative and quantitative methods must be directed toward this issue. Based on the burgeoning research on the impact of managed care (see Chapter 15) and the impact of malpractice on patient outcomes, we surmise that these two issues will dominate future practice and drive future research. At present, the links between malpractice and managed care are only anecdotal (Sanders & McBride, 1998) and therefore require further study. However, researchers must proceed with caution. In our opinion, overemphasis on these topics may deflect research from well-founded areas of investigation and prevent them from examining all the important dimensions that impact patient-provider interaction and outcomes. IMPLICATIONS FOR CLINICAL PRACTICE

As indicated, various dimensions of patient-provider interaction impact patient satisfaction, adherence to treatment regimens, and health outcomes. Each of these dimensions has implications for daily practice. Furthermore, the findings of research into these dimensions can inform curriculum development at the undergraduate, postgraduate, and continuing education levels, allowing clinician skills and attributes to be backed by strong evidence.

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For example, the skills of listening and facilitation are not merely supported by “soft evidence” but rather by significant associations with patient satisfaction, patient adherence, patient recovery, and a decline in malpractice claims. Awareness of the importance of continuity and the need to explore both the disease and the illness experience during the encounter can assist the clinician in providing care that is responsive to the patient’s needs and expectations. These findings can drive curriculum, evaluation, and ultimately professional certification. Yet to be determined is the impact of managed care on the patient-provider interaction. In spite of the fact that patients view such physician characteristics as trustworthiness and competence to be important attributes related to outcomes, managed care may undermine these basic components of the patient-provider relationship. Slovenko (1999) noted that “under capitation plans, the less the physician does, the more he or she earns” (p. 12). This notion of ‘do less, earn more’ could translate into ‘communicate less, earn more’. The implications for clinical practice need to be monitored. Although much has been accomplished in terms of educating undergraduate medical students and residents at some faculties of medicine, other faculties have yet to revise their curricula. Continuing medical education is largely an unmapped frontier for the communication educators. The key future challenges for clinicians will be to incorporate desirable changes into practice while maintaining quality interactions with patients. Examples of recent developments include using computers in the examining room so that patients and providers can speedily access information and incorporating evidence-based guidelines or protocols into everyday practice. Both of these changes provide benefits but also carry potential risks, such as diminished interaction between patient and provider. Clinicians and researchers alike would be wise to monitor the impact of these and other new developments on the valued patient-provider interaction. CONCLUSION

This chapter has focused on the effect of patient-provider interaction on patient outcomes such as satisfaction, adherence, and health status as well as its effect on provider outcomes such as malpractice and availability of time. We contend that all of these areas of inquiry are relevant and worthy of study. However, we must ask to what end are we studying and improving patient-provider interaction? Is our goal to positively influence patient health as well as other important health care outcomes, including system-level outcomes? All of the patient-provider interaction issues have implications for practice, and new questions arising out of practice may stimulate innovative research ideas that we have not yet envisioned. Although research on patient-provider interaction has become even more challenging in this era of managed care, the need for increased knowledge demands that future studies be designed and carried out. REFERENCES Anderson, R. J., Reed, G., & Kirk, L. M. (1982). Compliance in elderly hypertensives. Clinical Therapeutics, 5 (Spec. No.), 13–24. Arborelius, E., & Bremberg, S. (1992). What can doctors do to achieve a successful consultation? Videotaped interviews analyzed by the “consultation map” method. Family Practice, 9, 61–66.

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Hull. F. M., & Hull, F. S. (1984). Time and the general practitioner: The patient’s view. Journal of the Royal College of General Practitioners, 34, 71–75. Jacobson, L. D., Wilkinson, C., & Owen, P. A. (1994). Is the potential of teenage consultations being missed? A study of consultation times in primary care. Family Practice, 11, 296–299. Johnson, J. E., Nail, L. M., Lauver, D., King, K. B., & Keys, H. (1988). Reducing the negative impact of radiation therapy on functional status. Cancer, 61, 46–51. Kaplan, S. H., Greenfield, S., & Ware, J. E., Jr. (1989). Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Medical Care, 275, S110–S127. Kinnersley, P., Stott, N., Peters, T. J., & Harvey, I. (1999). The patient-centredness of consultations and outcomes in primary care. British Journal of General Practice, 49, 711–716. Kjellgren, K. I., Ahlner, J., & Saljo, R. (1995). Taking antihypertensive medication: Controlling or co-operating with patients? International Journal of Cardiology, 47, 257–268. Korsch, B. M., Gozzi, E. K., & Francis, V. (1968). Gaps in doctor-patient communication: I. Doctor-patient interaction and patient satisfaction. Pediatrics, 42, 855–871. Lester, G. W., & Smith, S. G. (1993). Listening and talking to patients: A remedy for malpractice suits? Western Journal of Medicine, 158, 268–272. Levinson, W. (1994). Physician-patient communication: A key to malpractice prevention. Journal of the American Medical Association, 272, 1619–1620. Levinson, W., Roter, D. L., Mullooly, J. P., Dull, V. T., & Frankel, R. M. (1997). Physicianpatient communication: The relationship with malpractice claims among primary care physicians and surgeons. Journal of the American Medical Association, 277, 553–559. Ley, P. (1982). Satisfaction, compliance and communication. British Journal of Clinical Psychology, 21(Pt. 4), 241–254. Ley, P. (1985). Doctor-patient communication: Some quantitative estimates of the role of cognitive factors in non-compliance. Journal of Hypertension, 3(1)(Suppl. 3), S51–S55. Linn, M. W., Linn, B. S., & Stein, S. R. (1982). Satisfaction with ambulatory care and compliance in older patients. Medical Care, 20, 606–614. Marvel, M. K. (1993). Involvement with the psychosocial concerns of patients: Observations of practicing family physicians on a university faculty. Archives of Family Medicine, 2, 629–633. Marvel, M. K., Doherty, W. J., & Weiner, E. (1998). Medical interviewing by exemplary family physicians. Journal of Family Practice, 47, 343–348. McLane, C. G., Zyzanski, S. J., & Flocke, S. A. (1995). Factors associated with medication noncompliance in rural elderly hypertensive patients. American Journal of Hypertension, 8, 206–209. McWilliam, C. L., Brown, J. B., & Stewart, M. (2000). Breast cancer patients’ experiences of patient-doctor communication: A working relationship. Patient Education and Counselling, 39, 191–204. Mechanic, D., & Schlesinger, M. (1996). The impact of managed care on patients’ trust in medical care and their physicians. Journal of the American Medical Association, 275, 1693–1697. Orth, J. E., Stiles, W. B., Scherwitz, L., Hennrikus, D., & Vallbona, C. (1987). Patient exposition and provider explanation in routine interviews and hypertensive patients’ blood pressure control. Health Psychology, 6, 29–42. Pascoe, G. C. (1983). Patient satisfaction in primary health care: A literature review and analysis. Evaluation and Program Planning, 6, 185–210. Penchansky, R., & Macnee, C. (1994). Initiation of medical malpractice suits: A conceptualization and test. Medical Care, 32, 813–831.

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8 Medical Disclosure and Decision-Making: Excavating the Complexities of Physician-Patient Information Exchange Catherine M. Gillotti Purdue University Calumet

Words are the most powerful tool a doctor possesses, but words, like a two-edged sword, can maim as well as heal. (Lown, 1996, p. 61)

When it comes to communication, the (sometimes faulty) assumption is that the messages we exchange are true. In the health care setting, the truth is sometimes concealed for the patient’s benefit, distorted in an attempt to compassionately deliver bad news, or not processed by the patient because of its ramifications. In spite of most people’s attempts to cover up the truth, whether their intention is noble or malicious, usually the truth is eventually revealed (Thomasma, 1994). According to Thomasma (1994), there are four types of truth and five reasons why the truth is sometimes concealed in the health care context. The four types are direct truth, factual truth, personal truth, and interpretative truth. Direct truth includes answers to yes/no questions, factual truth is concerned with objective reality, personal truth is selfdisclosure, and interpretative truth involves the interpretation of the reasons behind the communication. Thomasma argued that interpretative or hermeneutical truth is the most complex kind of truth and is particularly relevant in the health care context. Thomasma questioned why the truth is still withheld in the health care context despite the complexity of interpretations of truth and the motivations of the communicators to be honest. He noted that the values of individual well-being and survival of the community and some people’s inability to absorb the truth can result in “necessary paternalism” and suppression of the truth (p. 377). Although Thomasma provided several compelling case studies in which paternalism seemed necessary, he also reminded us that we are entitled to the truth in order to make informed decisions. In the end, he argued that withholding

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the truth is only temporary. “In vino, veritas it is said. The truth will eventually come out, even if in a slip of the tongue. Its revelation, if it is to be controlled, must always aim at the good of the patient for the moment” (p. 382). The issues regarding truth-telling in the health care context are among the many that fall within the category of medical disclosure. Examining these issues closely reveals, at the core, the influence of language itself on the physician-patient relationship. Barnlund (1976) argued that human illness is experienced both physically and symbolically. Although physicians must treat physical conditions, Barnlund reminded care providers that communication, particularly language, can have a powerful influence on the well-being of the patient. Tardy (2000) drew a similar connection between communication and well-being in an examination of the role of self-disclosure in the physician-patient interaction, and suggested that balance in information sharing is key to the patient’s wellbeing. What information to provide, how much, when, and with whom are all logistical considerations for both patients and physicians in the often complex physician-patient interaction. This chapter includes a review of various topics related to medical disclosure in order to illuminate the utility of information in the medical context for patient decision-making. In any case of information sharing in the health care context, a decision, even if it is a decision to do nothing, results from the interaction. Utilizing problematic integration (PI) theory (Babrow, 1992; Babrow, Hines, & Kasch, 2000) as a way to understand the complexities of decision making in the health care context, this chapter explores the ethical ramifications of medical disclosure, bad news delivery, informed consent, and end-of-life decisions. MEDICAL DISCLOSURE

The physician-patient relationship has received a great deal of scholarly attention. Street (1992) argued that this relationship is crucial to the development of patient trust and informed decision-making through information exchange. Information giving can be done by either the provider or the patient; thus, medical disclosure is dyadic and interdependent. This section looks at studies that have addressed the implications of medical disclosure for both providers and patients. Researchers and clinicians have carefully examined physician-patient communication. Indeed, studies have been done on verbal communication in the physician-patient consultation (Bain, 1976; Beckman, Markakis, Suchman, & Frankel, 1994; Branch & Malik, 1993; Buckman, 1992), patient perceptions of physician communication (Cardello, Ray, & Pettey, 1995; Street, 1992), patient and physician explanatory models of illness (Helman, 1985), physician liking and expressed emotion (Hall, Epstein, DeCiantis, & McNeil, 1993), patient education about the medical interview (McGee & Cegala, 1998), various verbal and nonverbal coding schemes utilized in the analysis of the physicianpatient relationship (Roter & Frankel, 1992; Roter, Hall, & Katz, 1988; Stiles & Putnam, 1989; Wasserman & Inui, 1983), the impact of provider communication on health outcomes (Greenfield, Kaplan, & Ware, 1985), and explanatory models of the physician-patient relationship (Emanuel & Emanuel, 1992; Epstein, Campbell, Cohen-Cole, McWinney, & Smilkstein, 1993; Stewart, Brown, Weston, McWhinncy, McWilliam, & Freeman, 1995). Regardless of the variables examined, the literature continuously points to the undeniable impact of communication on the physician-patient relationship. DiMatteo (1979) stated that the physician-patient relationship is emotionally charged and that attention should be paid to the interpersonal nature of the relationship. The

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author suggested that there has been a division between treating the patient scientifically and treating the patient interpersonally. Additionally, DiMatteo noted that, historically, bedside manner was really all that physicians had to offer their patients. The author called for acknowledgment of the importance of the socioemotional dimensions of physicianpatient interaction. It has been suggested that attention to these dimensions will increase patient compliance and satisfaction and possibly deter malpractice litigation. The practice of medicine has evolved over the centuries, and so has the nature of the physician-patient relationship. However, certain aspects of this relationship remain constant, including the need for information sharing between providers and patients and the existence of obstacles that can inhibit the exchange of information. Truth-Telling: The Provider’s Perspective

As Waitzkin (1985) stated, Hippocrates argued that it was the physician’s responsibility to determine how much information patients should receive about their condition. Waitzkin suggested that in contemporary Western medicine there are problems of withholding information, but patients more frequently are asserting their right to information. Using uncertainty, power, and social class language differences as foundations for explanation, Waitzkin examined information giving in the physician-patient relationship. The author hypothesized that physicians would withhold information in an attempt to maintain uncertainty and retain power. The study findings did not conclusively demonstrate these points. In fact, the results indicated that physicians provided more information under conditions of diagnostic uncertainty. Additionally, there was a relationship between physician social origin and amount of information provided, with middle- and upper-class physicians providing more information and patients of higher social class receiving more information (Waitzkin, 1985). These results suggest that, even though the concern to “do no harm” was the original principle upon which physicians decided whether to withhold information, it does not necessarily influence information dissemination decisions in the same way today. Goldman (1980) suggested that truth-telling and informed consent are two fundamental issues of medical ethics. Furthermore, he pointed out that patient rights are essential for self-determination and control. He argued that there are several reasons why patients should make their own decisions regarding their health: First is the presumption of their being the best judges of their own interests, which may depend upon personal value orderings known only to them. . . . The second reason is the independent value to self-determination, at least in regard to important decisions (in medical contexts decisions may involve life and death alternatives, affect the completion of major life projects, or affect bodily integrity) (p. 159)

Goldman also pointed out that self-determination incorporates more specific rights, including the right to the truth about health conditions, treatment risks, and alternative treatments. However, when physicians make decisions to withhold information from patients, they might still be exercising the Hippocratic principle. Truth-telling, informed consent, and self-determination are key to the protection of patient rights. Goldman stated that the fundamental right to information in the health care context is associated with the right to make decisions that concern one’s own well-being and life. The information that patients give to providers is of course important to their well-being.

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Truth-Telling: The Patient’s Perspective

Rosenfeld (2000) provided an overview of the philosophical and relational issues related to the dialectical tension between the need for privacy and the need “to be known” (p. 4). The author suggested that it is through self-disclosure that a person establishes a presence in the world and heals him- or herself. Tardy (2000) examined these notions as they operate in the health care context. In an analysis of the work of Sydney Jourard, Tardy reviewed the literature connecting self-disclosure to positive health outcomes, including increased resistance to illness and prevention of hypertension and cardiovascular disease. Tardy then investigated Jourard’s hypothesis that self-disclosure is positively correlated with health. The study results indicated general support for Jourard’s work, but Tardy called for more research to examine specific factors that connect self-disclosure to health outcome. Accepting the notion that self-disclosure can have both psychological and physiological benefits, it is appropriate to examine issues of patient privacy and the impact of self-disclosure on physician-patient interaction (Ashworth, Longmate, & Morrison, 1992; Coleman & Shellow, 1995; Crockford, Holloway, & Walker, 1993; Deering, 1999; Parrott, Duncan, & Duggan, 2000; Weijts, 1994; Weiss, 1986). Self-disclosure has been studied in relation to diseases that have a social stigma, such as cancer and HIV/AIDS (Greene, 2000; Mitsuya,1997; Mystakidou, 1996; Schofield, Walkom, & Sanson-Fisher, 1997; Welch Cline & McKenzie, 2000). For example, Greene (2000) examined how and why patients who are HIV positive or have full-blown AIDS disclose their health status given the negative social perceptions of the disease. According to Greene, studying disclosure in this patient population is particularly important because of the increase in the number of HIV-positive patients and the physiological and psychological benefits of disclosure. Researchers also have examined levels of patient participation in health care interactions (Ashworth et al., 1992; Parrott et al., 2000; Weiss, 1986). The information that patients provide is essential for diagnosis and treatment, yet some patients withhold vital information from their providers. Parrott et al. (2000) explored the reasons that patients conceal information by explicating various threats to patient privacy. In particular, patients withhold information because of cultural differences; confidentiality breaches due to team approaches to medicine; the personal characteristics of the patient, such as age and socioeconomic status; the nature of the interaction (e.g., providers can inhibit communication through interruptions); and threats to the patient’s identity, as explained by the theories of impression management (Goffman, 1959) and politeness theory (Brown & Levinson, 1978; Parrott et al., 2000). In an educational article for nurses, Deering (1999) reviewed the therapeutic goals of provider self-disclosure as a means of provoking disclosure on the part of patients. The more specific goals of provider self-disclosure include patient education, helping patients to realize their reactions are normal, promoting “emotional catharsis,” and showing support to patients. The research in this area clearly illustrates the benefits of patient and provider selfdisclosure. Goldman (1980), Thomasma (1994), and Tardy (2000) all called for balanced information sharing that took into account the legal, ethical, and interpersonal ramifications of information exchange in this context. Of course, consideration of all the factors affecting medical disclosure and patient self-disclosure is all the more important during the delivery of bad news.

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Bad News Delivery

Studies of the delivery of bad news by health care providers reveal that providers are concerned about being effective and offer advice to each other on delivery strategies (Brewin, 1991; Buckman, 1992; Charlton, 1992; Davis, 1991; Edlich & Kubler-Ross, 1991; Fallowfield, 1993; Faulkner, Argent, Jones, O’Keefe, 1995; Graham, 1991; Kaiser, 1993; Krahn, Hallum, & Kime, 1993; Laurent, 1991; Maynard, 1989, 1991; McLauchlan, 1990; Miranda & Brody, 1992; Ptacek & Eberhardt, 1996; Quill & Townsend, 1991; Rabow & McPhee, 1999; Speck, 1991; Statham & Dimavicius, 1992). Practicing physicians, many of whom have learned delivery techniques through trial and error rather than formal training, are the main sources of advice. Many studies stress that little training is provided in medical schools and residency programs and more formal education is needed in this area (Davis, 1991; Fallowfield, 1993; Graham, 1991; Laurent, 1991; McLauchlan, 1990; Miranda & Brody, 1992; Novack, Volk, Drossman, & Lipkin, 1993; Pearse & Cooper, 1993; Quill & Townsend, 1991; Rappaport & Witzke, 1993). This is not to say that studies on communication competencies of medical students and residents have not been conducted at all (Eggly et al., 1997; Gillotti, 1996; Novack et al., 1993; Rappaport & Witzke, 1993; Sloan, Donnelly, Johnson, Schwartz, & Strodel, 1994), however, such studies reveal that more training is needed, as the task is particularly daunting. Lown (1996) questioned why physicians depict medical situations in the most dire terms. He suggested several contributing factors. First, negative predictions are embedded in the culture. Second, due to the prevalence of malpractice litigation, physicians feel compelled to tell the patient the uncensored truth. However, as Lown emphasized, bluntly stating the prognosis without some kind words could lead the patient to view the physician as uncompassionate and inspire future litigation. Lown also recognized that fear caused by the negative presentation of health information can undermine decision making. Charlton (1992) likewise emphasized the importance of attending to the way the news is delivered. According to Charlton, a patient’s ability to cope depends on several factors, including the prognosis and how the news is delivered. The attention given to developing appropriate strategies for bad news delivery points to the complexities of the task while reinforcing the obligation of physicians to inform patients of their conditions. Bad news delivery and informed consent are inextricably tied to patient rights and autonomy (Charlton, 1992; Goldman, 1980; Waitzkin, 1985). In fact, the literature appears to reflect a tug-of-war between necessary paternalism and patient self-determination and autonomy (Charlton, 1992; Goldman, 1980; Thomasma, 1994). Goldman (1980) thoroughly examined the arguments for and against medical paternalism. He proposed two conditions under which physicians may withhold information: “One is where the truth will cause direct harm-depression or loss of continued will to live. The other is where informing may be instrumentally harmful in leading to a choice of wrong treatment or none at all” (p. 171). As a counterargument to paternalism, Goldman stated that it is unlikely that safeguarding patient rights will lead to harm. He also argued that, even if a patient may experience depression upon hearing the truth about his or her prognosis, a greater harm will be committed by denying the patient his or her rights. Although there is a reasonable argument for medical paternalism with roots in the Hippocratic Oath, patients continue to assert their right for full disclosure, especially when the information is perceived as bad news. Sell, Devlin, Bourke, Munro, Corris, and Gibson (1993) found that 46 out of 50 patients diagnosised with lung cancer wanted to know the truth about their diagnosis and felt

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their physicians had done the right thing in telling them. Additionally, 31 of the 46 felt more reassured after hearing the diagnosis. Davis (1991) contended that humans are more resilient than may be thought and that individuals deserve to know the truth about their health status if they want it. The key factor is respecting the patient’s wish for disclosure. There are times when patients do not wish to know information, bad news in particular, due to various cultural values (Carrese & Rhodes, 2000). For example, Carrese and Rhodes (2000) found that the receipt of negative information and subsequent planning can conflict with traditional Navajo beliefs. The authors explored “culturally competent” strategies for these interactions (Carrese & Rhodes, 2000, p. 92). Because of the general movement toward disclosing bad news, health communication scholars are doing more research on clinicians’ approaches to the delivery of bad news and the obstacles inherent in this particular type of interaction (Gillotti & Applegate, 2000). Gillotti and Applegate (2000) reviewed the medical literature on the various obstacles, which include dealing with the uncertainty of predicting medical outcomes, feelings of failure on the part of health care providers, dealing with the expressed emotions of both patient and provider, and lack of training in the delivery of bad news. Much of the literature on bad news delivery is atheoretical. However, Ptacek and Eberhardt (1996) and Gillotti and Applegate (2000) offered different theoretical frameworks for understanding and guiding the delivery of bad news. Ptacek and Eberhardt argued that, due to the stressful nature of the interaction for both the provider and the patient, bad news delivery is best understood using a stress and coping model. By contrast, Gillotti and Applegate argued that, due to the individual differences in communication competence between the provider and the patient, bad news delivery is best conceptualized from a constructivist, patient-centered perspective. Building on this perspective, Gillotti, Thompson, and McNeilis (2001) examined bad news delivery from a competence perspective. The literature on bad news delivery reveals minimal theory development and little insight into the connection between bad news delivery and medical decisions. Several authors have made only passing reference to future treatment plans and options once the news is delivered (Brewin, 1991; Davis, 1991; Fallowfield, 1993; Faulkner et al., 1995; Kaiser, 1993; Quill & Townsend, 1991; Statham & Dimavicius, 1992). Although much has been written on the subject of medical decision-making, few studies have explored the relationship between initial bad news delivery and the ultimate effect on the patient’s treatment decisions. One piece of advice that transcends debate over disclosure and interactional difficulties in the delivery of bad news was offered by Rabow and McPhee (1999) when they said, “To manage bad news well, the clinician must place his or her relationship with the patient, the strength and reality of their human bond, over the insecurity of disease, the threat of dissolution, and the fear of death” (p. 263). Having established the historical trend toward truth-telling and the obligation to protect the patient from harm while respecting the patient’s right to self-determination, an explanation of the ethical foundations of informed consent follows. INFORMED CONSENT “The most important single contribution of research ethical codes for protection of human subjects to clinical practice is the doctrine of informed consent” (Kagarise & Sheldon, 2000, p. 39).

The concern for patient rights and autonomy evolved from the horrors of the Second World War and the Nuremberg Trials that followed, in which physicians were held accountable

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for the medical experiments they performed on prisoners—experiments in direct violation of the Hippocratic Oath (Dennis, 1999; Kagarise & Sheldon, 2000; Woodward, 1999). Kagarise and Sheldon (2000) provide an excellent review of the historical events leading to the current concern for patient rights. Additionally, they provide a theory of translational ethics to address the protection of human subjects in clinical practice. Initially it was the 10 Nuremberg principles that set the expected standards of behavior for physicians (Kagarise & Sheldon, 2000): After the Nuremberg trials, in 1947, 10 principles of conduct expected of physicians in the conduct of research on human subjects were described in the Nuremberg Code on the Ethics of Human Research: voluntary consent; an expected beneficial outcome; prior experimentation on animals; avoidance of unnecessary pain and horror; avoidance of risk or disablement; risk taking not to exceed expected advantages; protection against the possibility, however slight, of injury, disablement, or death; scientifically and technically qualified experimenters; the subject’s freedom to retract consent; and the experimenter’s obligation to stop the experiment when continuation will result in participant injury or death (p. 39).

Although the tenets of the Nuremberg Code can be found in operation in medical and social science research today, between 1947 and 1975 the code was generally not adhered to in research endeavors (Kagarise & Sheldon, 2000). In 1948, the World Health Organization issued the Declaration of Geneva, which was based on the Hippocratic Oath and the Nuremberg Code, to address physician professionalism outside of research, and the International Code of Medical Ethics was constructed in 1949 (Kagarise & Sheldon, 2000). Medical ethics reached a turning point in 1975 with the Declaration of Helsinki, which emphasized the importance of conducting proper research in accordance to the Nuremberg Code. These documents laid the foundation for current conceptions of medical ethics (Goldman, 1980; Kagarise & Sheldon, 2000; Woodward, 1999). Woodward (1999) claimed that, although the Nuremberg Code and the Declaration of Helsinki are different documents, they share a similar concern for the protection of patient rights and the rights of research participants, placing these rights above scientific and societal advancement. Dennis (1999) discussed the decisions made between 1905 and 1914 that form the legal grounding for informed consent in the United States. These decisions set precedent for future legislation. One key document was the Belmont Report of 1974, written by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. This report increased the public’s concern for patient rights and autonomy (Kagarise & Sheldon, 2000). Recent legislation pertinent to patient rights includes the Patient Self-Determination Act, which was passed as part of the Omnibus Budget Reconciliation Act of 1990 (Young & Jex, 1992). “The Act follows a historical trend led by doctrines of informed consent and increasing patient autonomy regarding rights to accept or refuse medical treatment to execute advance directives” (Young & Jex, 1992, p. 107). According to Young and Jex (1992), the act requires medical facilities to adhere to the following stipulations: First, written documentation must be provided to patients upon admission regarding their right under the law to accept or refuse medical treatment and to execute advance directives. Patients must also be given written information on the policies of the institution regarding the implementation of such rights. Patients must be asked whether or not they have an advance directive, and their answers should be documented in the medical record. Execution

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of advance directives can in no way be required as a condition of providing medical treatment. Each institution must also ensure compliance with state law (statutory or case law) respecting advance directives. (p. 108)

Shapiro (1992) examined issues not clearly addressed by the Patient Self-Determination Act. These issues include patient advocates making decisions when the patient is unable; the transfer of patients to other facilities and the adherence to the patient’s advance directive; the ambiguity of the advance directive reflecting the patient’s actual wishes; advance directives that are broader than state statutes; the obligation of psychiatric facilities to adhere to such directives; age limitations for advance directives; and finally instances where the physician does not have a copy of the advance directive. After 50 years of doctrine and legislation, patient autonomy and patient rights continue to be the focus of research. Issues involving informed consent include the adequacy of hospital consent forms (Bottrell, Alpert, Fischbach, & Emanuel, 2000); obtaining informed consent from vulnerable groups (Dennis, 1999); concern for proper obtainment of consent (Bottrell et al., 2000; Kirsch, 2000); obtaining consent by proxy (Lashley, Talley, Lands, & Keyserlingk, 2000); ensuring the protection of patient medical information (Longhway, 1999); obtaining consent for tissue research (Pentz, Young, Amos, Hess, Wei, & Anderlik, 1999); and educating medical students and residents on obtaining informed consent (Angelos, DeRosa, Derossis, & Kim, 1999; Roberts, Mines, Voss, Koinis, Mitchell, Obenshain, & McCarty, 1999). Interestingly, Woodward (1999) claimed that the expediency of institutional reviews and the rush to advance medicine contribute to the weakening of human subject protection: “It is the rapid march of science itself that is largely responsible for the pressures to weaken subject protections” (p. 1948). Systematically addressing the various stipulations of the Nuremberg Code and the Declaration of Helsinki, Woodward (1999) examined various factors affecting the protection of human subjects. He cited increased medical research funding, computer technology, and new research technology as factors leading to a demand for larger participant pools, easier subject recruitment, and easier access to patient medical records. All of these factors set the stage for possible violation of patient rights as outlined by the above documents. Further, Woodward suggested that the demands on institutional review boards, which are set up to protect patient and participant rights, may make it difficult to perform adequate and thorough reviews of research protocols. Finally, he argued that the line between clinical practice and medical research is blurring: “The expansion of research using a variety of imaging and monitoring devices, human biological materials, and information processing technologies may, before long, turn every patient into a research subject (or rather, research object) simply by virtue of a decision to seek medical care” (p. 1952). Not surprisingly, he called for a renewed commitment to the protection of human subjects. While his perspective may seem alarming, Woodward’s (1999) reasoning punctuates the continued debate between altruistic research endeavors and the immediate benefit to the patient/research participant. Shuchman (1999) reports on several media stories about the unethical enlisting of psychiatric patients into clinical trials which resulted in patient deaths and subsequent attempts by the physicians involved to cover up their participation. Kirsch (2000) argued that informed consent has become an exercise in legal protection rather than a tool to inform patients of various risk factors. He stated that he received no formal training on how to obtain consent and that the emphasis in practice is to “document” the consent, not actually “obtain it” (p. 588). Further, he argued that the very signing of

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an informed consent form demonstrates a “trust deficit” between physician and patient (p. 588). He concluded by claiming that informed consent is the foundation of medical ethics, emphasizing that both physicians and patients will benefit from taking the issue more seriously. Bottrell et al. (2000) conducted a content analysis of 540 informed consent forms from 157 hospitals across the nation. The researchers hypothesized that the informed consent forms would not meet the accepted standards. The results indicated that, although 96% of the forms adequately indicated the nature of the procedure, they did not always clearly state the risks, benefits, and alternatives. In fact, only 26% of the forms included all four items. Echoing Kirsch’s (2000) concern, the authors suggested that the current forms do not facilitate the process of gaining truly informed consent (i.e., they do not help the patient make an informed decision). They propose an alternative form that covers the procedure, risks, benefits, and alternatives. Although many clinicians have never received formal training in informed consent procedures, researchers are studying the communication skills of current medical students and their ability to obtain informed consent. Roberts et al. (1999) conducted a study of 71 senior medical students using videotapes of standardized patient interactions. The students’ task was to obtain informed consent for a cardiac catheterization from a standardized patient expressing concern about the procedure. The patient rated each student on informed consent procedures and communication skills. The students received high scores on both checklists, and the authors suggested using this form of ethical competency assessment in medical education. Also, they noted that obtaining informed consent requires more than communicative abilities alone. On the other hand, the findings confirm the correlation between the physician-patient relationship, communication skills, and obtaining informed consent (Roberts et al., 1999). Summary

The research cited in the preceding sections provides the historical foundations for the ethical delivery of diagnostic and prognostic information between physician and patient. Clearly, there are many legal and ethical considerations involved in medical disclosure, in particular, the delivery of bad news, and these should govern the decisions of clinicians on whether to provide patients with information. Although the practice of medical disclosure has shifted over time—from the withholding of information for the protection of patient well-being to the giving of information for the same reason—respect for the Hippocratic Oath remains steadfast, as indicated by the modern doctrine of informed consent. The next step is to consider the influence of information on medical decision-making. MEDICAL DECISION-MAKING

Once patients have been provided information about their condition, they have to process that information to decide their best course of action. According to Braddock, Edwards, Hasenberg, Laidley, and Levinson (1999), little is known about the discussions taking place between physicians and patients to ensure that the patients are informed and participate as equals in the decision-making process. They therefore analyzed 1,057 interactions that occurred during clinical office visits in order to assess informed decision-making between patients and physicians. The authors developed seven criteria for defining informed decision-making, including patient participation and preferences; discussion of the nature of the decision; and discussion of risks, benefits, alternatives, uncertainties, and

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patient understanding. A content analysis of the interactions revealed there were 3,552 clinical decisions made but only 9% fully met the seven criteria. The authors concluded that more effort needs to be devoted to meeting all the criteria, even for low-complexity decisions. Foley (1999) encouraged physicians, patients, and families to work together in communicating specific goals for treatment. There are times when patients can no longer make decisions for themselves and must rely on family members to be their advocates. The most common documents for prearranging life-sustaining treatments are advance directives, living wills, and powers of attorney for health care (Gordon & Tolle, 1991). Even with one of these documents in place, family members must know the patient’s wishes, as they will most likely serve as decision-making surrogates when the patient no longer is able to communicate. Sulmasy, Terry, Weisman, Miller, Stallings, Vettese, and Haller (1998) studied the accuracy of family members’ substituted judgments for patients with terminal illnesses. These authors found that patient surrogates were only 66% correct in predicting the patient’s wishes. They concluded that a variety of factors impact the accuracy of surrogate judgments and that accuracy would improve if clinicians had more frank discussions with terminally ill patients about their prognosis. Another factor impacting end-of-life decisions is managed care. Kuczewski and DeVita (1998) found that patients and family members need to know the financial ramifications of treatment options in end-of-life care but that whose responsibility it is to provide this information is often unclear. They present a poignant case study where the ethical consultant for the hospital was called in by the hospital social worker to speak to the family of a terminally ill patient. The social worker was concerned that the patient’s length of stay had become too long and that reimbursement would not be provided to the patient by the insurance company. The social worker did not clearly communicate that this was the concern and instead told the consultant the family was “conflicted.” The financial concerns were not communicated to the family, nor to the physician, and thus were not factored into subsequent decisions about hospice care. Kuczewski and DeVita call for disclosure of significant billing information so that family members can include this information in the decision-making process. Cases like this demonstrate the ongoing need for open communication between providers, patients, and families. Provider-patient partnerships have been advocated in other articles (Brody, 1980; Kasper, Mulley, & Wennberg, 1992; Quill, 1983). Kasper et al. (1992) developed the Shared Decision-Making Program, which is an interactive video program used jointly by clinicians and patients to discuss treatment options. Additionally, researchers have addressed a variety of other decision-related topics, including decision-making assistance for elderly cancer patients (Lewis, Pearson, Corcoran-Perry, & Narayan, 1997); decisionmaking and CPR (Kerridge, Pearson, Rolfe, & Lowe, 1998); the impact of emotion on patient decision-making (Redelmeier, Rozin, & Kahneman, 1993; P. A. Shapiro & Muskin, 1993); and decision-making, consent, and resuscitation (Ardagh, 1999). Clarke and Evans (1998) explained that there are many obstacles to medical decisionmaking, including the complexity of interpreting the statistical results of medical research to determine the best treatment options, the influence of the media on patient perceptions of options, physician preferences for certain treatments and procedures, the language with which options are communicated and framed in terms of uncertainty and risk, patient and physician emotions, and cost. There is yet an entirely separate body of research devoted to end-of-life decisions. Researchers have addressed issues related to self-determination and advance directives

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(Basile, 1998; Ersek, Kagawa-Singer, Barnes, Blackhall, & Koenig, 1998; Nolan & Bruder, 1997; Ott, 1999; Srebnik & La Fond, 1999), the impact of managed care on end-of-life decisions (Kuczewski & DeVita, 1998), discussions of pain management with terminal illness (Foley, 1999), the ethical and legal issues involved in physician-assisted suicide (Gostin, 1997; McCue & Cohen, 1999; Meisel, Jernigan, & Youngner, 1999; Ryan, 1998), patient education on life-sustaining treatments (Brandenburg & Gifford, 1997), patient attitudes about life-sustaining treatments (Blackhall, Frank, Murphy, Michel, Palmer, & Azen, 1999), end-of-life decisions in critical care units (Sprung & Oppenheim, 1998), end-of-life decisions for nephrology patients (Cooper, 1998; Loftin & Beumer, 1998), protocols for making end-of-life decisions (Fry, 1998; Stoeckle, Doorley, & McArdle, 1998), and medical education and end-of-life decisions (Danis, Federman, Fins, Fox, Kastenbaum, Lanken, Long, Lowenstein, Lynn Rouse, & Tulsky, 1999; Gordon & Tolle, 1991; Hayes, Stoudemire, Kinlaw, Dell, & Loomis, 1999). Common to all of the articles is a concern for the protection of self-determination. Gostin (1997) provided a detailed history of legal cases addressing end-of-life issues ranging from withholding treatment to physician-assisted suicide. In regard to refusal of treatment, Gostin states that the courts have ruled that the right to refuse treatment is protected by the U.S. Constitution, specifically the Due Process Clause of the Fourteenth Amendment. At the same time, the Supreme Court found that assistance in committing suicide is not a protected liberty of the Due Process Clause. McCue and Cohen (1999) detailed Sigmund Freud’s battle with cancer and his eventual voluntary active euthanasia to raise some interesting questions about the protection of selfdetermination in the dying process. It has been pointed out that terminally ill patients may make irrational decisions to end their own lives. However, the authors suggested that some terminally ill patients make the decision to commit active euthanasia well before the disease and/or depression over the illness could affect their capacity to decide such things: “Just as Freud chose to live as long as life was personally meaningful, and die the death he chose at the hands of his trusted physician, Max Schur, we believe that it is inevitable that more terminally ill patients will demand physician assistance in a quick, controlled, and reconciled death when life’s potential has been exhausted and death is imminent” (p. 1521). Physician-assisted suicide is only one end-of-life option, and clearly it is not within the scope of this chapter to even begin to explore the ethical, legal, and moral ramifications of the right to die. People obviously disagree over the role clinicians should play in active euthanasia. However, what is unequivocal and reiterated by all the authors cited above is the need to protect the right of patients to make their own end-of-life decisions. There are specific guidelines for clinicians to help patients and family members make these often difficult decisions (Blatt, 1999; Fry, 1998). Fry (1998) suggested that nurses have four responsibilities in end-of-life decisions: to be a patient advocate, to relieve the patient’s pain and suffering, to provide comfort, and to avoid active euthanasia or assisted suicide. According to Fry, nurses have an ethical obligation to make sure that patients and family members are fully informed of all treatment options and that the patients are as comfortable and free from pain as possible. Blatt (1999) suggested several strategies for helping family members make medical decisions for the patient. First, the health care providers need to establish a relationship with the family members. Second, those providers who have been caring for the patient consistently should be the ones to deliver information to the family. Third, the providers, if necessary, should help the family members come to a consensus. Finally, once a decision has been reached, the providers should support the family’s decision.

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Summary

Clearly, knowing how much information, what information, when to give it, and how to deliver diagnostic news entailing potential negative outcomes is an ongoing challenge for clinicians as they continue to uphold current ethical and legal standards. Besides the obstacles to bad news delivery described by Gillotti and Applegate (2000), the obstacles to decision-making described by Clarke and Evans (1998), and the ethical and legal obligations described by Goldman (1980), Kagarise and Sheldon (2000), and Gostin (1997), clinicians are faced with myriad communicative challenges as they attempt to assist patients in making medical decisions. Given the need to weigh difficult and uncertain outcomes based on the information provided to patients by physicians, coupled with the values and beliefs about life and death that patients bring with them to each interaction, perhaps the issues involved in medical decision-making are best understood from the perspective of problematic integration theory (Babrow, 1992; Babrow et al., 2000). PROBLEMATIC INTEGRATION THEORY

According to Babrow et al. (2000), problematic integration theory is a general theory that addresses uncertainty and communication. Babrow (1992) stated that there are two assumptions that are integral to the theory. First, people have a probabilistic orientation to the world, in which certain outcomes arise. Second, people have an evaluative orientation toward possible outcomes. The health care context lends itself to the application of this theory because of the inherent uncertainty of health care and the probabilistic nature of treatment options. Babrow et al. (2000) stated that probabilistic and evaluative orientations are integrated into experience. Hence, communication can simultaneously influence the probability of an outcome as well as the evaluation of that outcome. “For now it is enough to note that communication patterns can shape the structures we use to interpret messages about probability and value” (Babrow, 1992, p. 101). With this in mind, Babrow suggested that integration of probability and value becomes more difficult with divergence, meaning that the more probable an outcome is and the more negative its evaluation, the more difficult it will be to integrate the outcome into experience. “A basic integrative predicament arises when there is a discrepancy between what we believe to be so and what we want to be so (either retrospectively, in the present, or prospectively)” (p. 100). Babrow et al. (2000) stated that persons experiencing medical problems are confronted with a multitude of integrative dilemmas. In addition to the synergistic role of communication and its influence on probability and evaluation, a person’s emotions affect the process, since they can shape communication and interpretation (Babrow, 1992). This highlights the importance of this theory for understanding bad news delivery and decision-making, particularly end-of-life decisionsmaking, as these explanations of illness will inevitably be laden with emotion (Clark & Evans, 1998; DiMatteo, 1979; Gillotti & Applegate, 2000; Lown, 1996; Redelmeier et al., 1993; P. A. Shapiro & Muskin, 1993). Babrow et al. (2000) argued that how uncertainty is interpreted in this context depends on what information is provided to the patient. They discussed several message features that are key to reducing uncertainty, including clarity, completeness, volume, accuracy, source ethos, ambiguity, applicability, and consistency. Importantly, Babrow et al. recognized the relativity of the interpretation of each of these features by suggesting that what is too much information for one person is not enough for another. Babrow (1992) discusses the importance of the rhetorical choices made by communicators. “Depending on their

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awareness of its disturbing potential, communicators make rhetorical choices in coping with the difficulties inherent in expressing news of diverging probability and evaluation” (Babrow, 1992, p. 105). Thus, the language the provider uses to communicate diagnostic and prognostic news and the treatment options available to the patient are crucial to the patient’s ability to make reasonable decisions. How people make decisions has been studied for centuries. Although some people base their decisions upon logic and reason, others base their decisions upon what is reasonable to them (Perelman & Tyteca, 1969). In other words, logic is not always the guiding factor, in decision-making; rather, what is reasonable to individuals is a guiding factor, and reasonableness is relative to individuals and their values and beliefs. “Common sense regularly opposes facts to theories, truths to opinions, and that which is objective to that which is not. By this opposition it indicates what opinions are preferred to others, whether or not the preference be based on generally accepted criteria” (Perelman & Tyteca, 1969, p. 511). What is crucial to this rhetorical perspective is the understanding that individuals’ value systems arise from their language communities (Perelman & Tyteca, 1969). What language is used to present options for a decision becomes crucial, and thus the rhetor must pay attention to the audience. This recognition of the importance of the audience of a medical message and of the values that patients bring to medical interactions is embedded in problematic integration theory and provides insight into the complexity of medical decision-making. CONCLUSION

There are several themes that emerge from the literature on medical disclosure, bad news delivery, informed consent, end of life decisions and problematic integration theory. These themes include a concern for the ethical obligation of physicians to disclose diagnostic and prognostic information to patients even when the news is bad; a movement away from medical paternalism to patient self-determination and control; the need for patient advocacy by family members and care providers; and a recognition that many factors, such as affect, communication, attitude toward risk, the physician-patient relationship, and patient beliefs affect medical decision-making. This review uncovers the foundational legal and ethical doctrines that underpin the concern for patient self-determination. While the current trends favor patient autonomy, we must keep in mind that sometimes others must make decisions for us when we are unable. The balancing act between truth and hope, autonomy and dependency, is often tough to negotiate, especially with end-of-life decisions. Unfortunately, medicine is not an exact science in which all outcomes are known. Medical care providers can only aid in patient decision-making through open and honest communication. As providers seek to assist patients in making decisions, both providers and patients might benefit by taking to heart the following sentiment: “Clinicians are not responsible for knowing the answers to patients’ deeply personal and existential questions; they are called on to be present as witnesses to their patients’ suffering and to respect the vulnerability created by the news they bear” (Rabow & McPhee, 1999, p. 263). REFERENCES Angelos, P., DaRosa, D. A., Derossis, A. M., & Kim, B. (1999). Medical ethics curriculum for surgical residents: Results of a pilot project. Surgery, 126, 701–705. Ardagh, M. (1999). Resurrecting autonomy during resuscitation: The concept of professional substituted judgment. Journal of Medical Ethics, 25, 375–378.

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Gordon, G. H., & Tolle, S. W. (1991). Discussing life-sustaining treatment: A teaching program for residents. Archives of Internal Medicine, 151, 567–570. Gostin, L. O. (1997). Deciding life and death in the courtroom. Journal of the American Medical Association, 278, 1523–1528. Graham, J. R. (1991). Touching and imparting of bad news. Lancet, 337, 1608–1609. Greene, K. (2000). Disclosure of chronic illness varies by topic and target: The role of stigma and boundaries in willingness to disclose. In S. Petronio (Ed.), Balancing the secrets of private disclosures (pp. 123–135). Mahwah, NJ: Lawrence Erlbaum Associates. Greenfield, S., Kaplan, S., & Ware, J. E. (1985). Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine, 102, 520–528. Hall, J. A., Epstein, A. M., DeCiantis, M. L., & McNeil, B. J. (1993). Physicians’ liking for their patients: More evidence for the role of affect in medical care. Health Psychology, 12, 140–146. Hayes, R. P., Stoudemire, A. S., Kinlaw, K., Dell, M. L., & Loomis, A. (1999). Changing attitudes about end-of-life decision making of medical students during third-year clinical clerkships. Psychosomatics, 40, 205–211. Helman, C. G. (1985). Communication in primary care: The role of patient and practitioner explanatory models. Social Science and Medicine, 20, 923–931. Kagarise, M. J., & Sheldon, G. F. (2000). Translational ethics: A perspective for the new millennium. Archives of Surgery, 135, 39–45. Kaiser, R. M. (1993, October). The challenge of breaking bad news. Hospital Practice, pp. 8–14. Kasper, J. F., Mulley, A. G., & Wennberg, J. E. (1992, June). Developing shared decisionmaking programs to improve the quality of health care. QRB, pp. 183–190. Kerridge, I. H., Pearson, S., Rolfe, I. E., & Lowe, M. (1998). Decision making in CPR: Attitudes of hospital patients and healthcare professionals. Medical Journal of Australia, 169, 128–131. Kirsch, M. (2000). The myth of informed consent. American Journal of Gastroenterology, 95, 588–589. Krahn, G. L., Hallum, A., & Kime, C. (1993). Are there good ways to give “bad news”? Pediatrics, 91, 578–582. Kuczewski, M. G., & DeVita, M. (1998). Managed care and end-of-life decisions: Learning to live ungagged. Archives of Internal Medicine, 158, 2424–2428. Lashley, M., Talley, W., Lands, L. C., & Keyserlingk, E. W. (2000). Informed proxy consent: Communication between pediatric surgeons and surrogates about surgery. Pediatrics, 105, 591–597. Laurent, C. (1991). Breaking bad news. Nursing Times, 87(12), 24–28. Lewis, M., Pearson, V., Corcoran-Perry, S., & Narayan, S. (1997). Decision making by elderly patients with cancer and their caregivers. Cancer Nursing, 20, 389–397. Loftin, L. P., & Beumer, C. (1998). Collaborative end-of-life decision making in end stage renal disease. American Nephrology Nurses’ Association Journal, 25, 615–617. Longhway, C. H. (1999). Preserving patient privacy. American Journal of Nursing, 99(10), 14. Lown, B. (1996). The lost art of healing. Boston: Houghton Mifflin. Maynard, D. W. (1989). Notes on the delivery and reception of diagnostic news regarding mental disabilities. In D. T. Helm, W. T. Anders, A. J. Meehan, & A. W. Rawls (Eds.), The interactional order: New directions in the study of social order (pp. 54–67). New York: Irvington. Maynard, D. W. (1991). Bearing bad news in clinical settings. In B. Dervin & M. J. Voigt (Eds.), Progress in communication sciences, (Vol. 10, pp. 143–172). Norwood, NJ: Ablex.

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McCue, J. D., & Cohen, L. M. (1999). Freud’s physician-assisted death. Archives of Internal Medicine, 159, 1521–1525. McGee, D. S., & Cegala, D. J. (1998). Patient communication skills training for improved communication competence in the primary care medical consultation. Journal of Applied Communication Research, 26, 412–430. McLauchlan, C. A. J. (1990). Handling distressed relatives and breaking bad news. British Medical Journal, 301, 1145–1149. Meisel, A., Jernigan, J. C., & Youngner, S. J. (1999). Prosecutors and end-of-life decision making. Archives of Internal Medicine, 159, 1089–1095. Miranda, J., & Brody, R. V. (1992). Communicating bad news. Western Journal of Medicine, 156, 83–85. Mitsuya, H. (1997). Telling the truth to cancer patients and patients with HIV-1 infection in Japan. Annals of the New York Academy of Sciences, 809, 279–289. Mystakidou, K. (1996). Disclosure of diagnostic information to cancer patients in Greece. Palliative Medicine, 10, 195–200. Nolan, M. T., & Bruder, M. (1997). Patients’ attitudes toward advance directives and end-of-life treatment decisions. Nursing Outlook, 45, 204–208. Novack, D. H., Volk, G., Drossman, D. A., & Lipkin, M. (1993). Medical interviewing and interpersonal skills teaching in US medical schools: Progress, problems, and promise. Journal of the American Medical Association, 269, 2101–2105. Ott, B. B. (1999). Advance directives: The emerging body of research. American Journal of Critical Care, 8, 514–519. Parrott, R., Duncan, V., & Duggan, A. (2000). Promoting full and honest disclosure during conversations with health care providers. In S. Petronio (Ed.), Balancing the secrets of private disclosures (pp. 137–148). Mahwah, NJ: Lawrence Erlbaum Associates. Pearse, P., & Cooper, C. (1993). Breaking bad news. Medical Journal of Australia, 158, 137. Pentz, R. D., Young, L. N., Amos, C. I., Hess, K. R., Wei, Q., & Anderlik, M. R. (1999). Informed consent for tissue research. Journal of the American Medical Association, 282, 1625. Perelman, C. H., & Tyteca, L. O. (1969). The new rhetoric: A treatise on argumentation. Notre Dame, IN: University of Notre Dame Press. Ptacek, J. T., & Eberhardt, T. L. (1996). Breaking bad news: A literature review. Journal of the American Medical Association, 276, 496–502. Quill, T. E. (1983). Partnerships in patient care: A contractual approach. Annals of Internal Medicine, 98, 228–234. Quill, T. E., & Townsend, P. (1991). Bad news: Delivery, dialogue, and dilemmas. Archives of Internal Medicine, 151, 463–468. Rabow, M. W., & McPhee, S. J. (1999). Beyond breaking bad news: How to help patients who suffer. Western Journal of Medicine, 171, 260–263. Rappaport, W., & Witzke, D. (1993). Education about death and dying during the clinical years of medical school. Surgery, 113, 163–165. Redelmeier, D. A., Rozin, P., & Kahneman, D. (1993). Understanding patients’ decisions: Cognitive and emotional perspectives. Journal of the American Medical Association, 270, 72–76. Roberts, L. W., Mines, J., Voss, C., Koinis, C., Mitchell, S., Obenshain, S. S., & McCarty, T. (1999). Assessing medical students’ competence in obtaining informed consent. American Journal of Surgery, 178, 351–354. Rosenfeld, L. B. (2000). Overview of the ways privacy, secrecy, and disclosure are balanced in today’s society. In S. Petronio (Ed.), Balancing the secrets of private disclosures (pp. 3–17). Mahwah, NJ: Lawrence Erlbaum Associates.

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9 Children, Older Adults, and Women: Impact on Provider-Patient Interaction Jon F. Nussbaum Penn State University

Sandra Ragan University of Oklahoma

Bryan Whaley University of San Francisco

This chapter introduces three underrepresented populations within health communication research. Both the health issues and the communication factors that are related to patients who are children, elderly, or women have not been the focus of much scholarly activity until quite recently. Many of the major health communication issues that are faced by these individuals on a daily basis are unique and can create complex interactive dilemmas for both the person who is seeking help and those professionals who are attempting to provide quality care. PROVIDER INTERACTIONS WITH PEDIATRIC PATIENTS

Effective provider-patient interaction, regardless of how defined, is formidable under the best of communicative conditions. This venture becomes particularly challenging when the patients are children. Pediatric patients’ lack of illness knowledge and life experiences as well as their ever-changing cognitive and linguistic development make message production tailored for illness interaction extremely ambitious. As arduous a process as interacting with children about illness appears to be, this discourse is claimed an essential component of their health-related experience. For instance, children’s understanding of illness and the medical setting is thought to be primary to their adherence to medical regimens and advice, self-management, and stress reduction (e.g., Burbach & Peterson, 1986; Eiser, 1985a,b,c; Eiser & Eiser, 1987; Potter & Roberts, 1984). Dorn (1984) posits the importance of this phenomenon: “how effectively one communicates can affect children’s reactions to procedures, compliance with therapy, and knowledge about health and illness. . . . How one

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approaches the child, the techniques used, and the language employed determine the degree of success or failure in these interactions” (p. 325). Adults’ interaction with children about illness is often characterized by the following strategy: “Adults often assume that if they tell a child something—explaining it calmly and rationally—the child will comprehend” (Steward & Regalbuto, 1975, p. 146). As evident, disparity exists between what children want or need and the messages providers create during interaction. At this juncture, theorizing and research concerning patient-provider interaction and concerning children have served more a heuristic than pragmatic function. Specifically, the existing contributions to this literature have been scant and often anecdotal, leaving providers in want of more specific guidelines for interaction. However, what has been offered regarding theory and strategies for message production is rich with potential (see Whaley, 2000, for detailed discussion of this literature). Theoretical Foundation(s) for Provider Interaction with Children

Stage theory (Bibace & Walsh, 1979, 1980, 1981; Piaget, 1930; Werner, 1948) has served as the conceptual base for research concerning interacting with children in health settings. Specifically, by understanding how children conceptualize disease and illness, researchers can estimate children’s comprehension of illness (Perrin & Perrin, 1983) and extract interaction strategies that are age- and developmentally appropriate (Goldman, WhitneySaltiel, Granger, & Rodin, 1991; Eiser, 1985a,b,c; Eiser & Eiser, 1987; Eiser, Patterson, & Tripp, 1984; see Eiser, 1985a,b,c, for reviews of sociological approach contributions to children’s concepts of illness). Bibace and Walsh (1981) suggested that children’s conceptualization of illness lies on a continuum of three levels—prelogical (ages 2 to 6 years), concrete-logical (ages 7 to 10 years), and formal-logical (ages 11 and older)—which differ developmentally and qualitatively; moreover, each level has two sublevels of explanations, rendering six types of explanations of illness by children (see also Eiser, 1985a,b,c, and Whaley, 2000, for more detailed discussions). The younger children at the prelogical stage conceptualize illness as phenomenism—sickness is caused by a force external to them, but they are incapable of explaining the mode by which the agent worked (“How do people get colds?” “From the sun.” “How does the sun give you a cold?” “It just does, that’s all”; Bibace & Walsh, 1981, p. 36). For the older children at the prelogical level, the governing explanation for sickness is contagion—the agent or source of illness is caused by entities that are in the immediate proximity to the child but not in actual contact (e.g., “How do people get colds?” “When someone else gets near them”; Bibace & Walsh, 1981, p. 36). Youngsters at the concrete-logical stage suggest that sickness occurs via contamination (transmission by physical contact—e.g., touching, rubbing; that is, “How do people get them [colds]?” “You’re outside without a hat and you start sneezing. Your head would get cold, the cold would touch it, and then it would go all over your body.”). (Bibace & Walsh, 1981, p. 36). More advanced illness causation within the concrete-logical stage is characterized by internalization. Here, children depict illness as an external agent that by obtaining bodily entry (e.g., inhaling, swallowing) inhabits the body internally (though they are vague on how illness affects them internally; Bibace & Walsh, 1981): How do people get colds? “In winter, they breathe in too much air into their nose, and it blocks up the nose.” How does this cause colds? “The bacteria gets in by breathing. Then the lungs get too soft [child exhales], and it goes to the nose.” How does it get better? “Hot fresh air, it gets in the nose and pushes the cold air back.” (Bibace & Walsh, 1981, p. 37)

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Finally, pediatric patients at the formal-logical stage conceptualize illness as a physiological phenomemon—external culprits affecting the functioning of internal bodily parts and/or organs in a “step by step internal sequence or events culminating in that illness” (Bibace & Walsh, 1981): How do people get colds? “They come from viruses, I guess. Other people have the virus, and it gets into your blood stream and it causes a cold.” (p. 37)

As children advance within the formal-logical level, they progress from physiological to psychophysiological explanations of illness, where psychological factors (i.e., thoughts, feelings) are perceived to contribute to physical demise: What is a heart attack? “It’s when your heart stops working right. Sometimes it’s pumping too slow or too fast.” How do people get a heart attack? “It can come from being all nerve-racked. You worry too much. The tension can affect your heart.” (Bibace & Walsh, 1981, p. 38)

Piagetian theory of development (e.g., Piaget, 1930) has dominated contemporary research concerning patient-provider interaction. Again, the rationale for the research concerning children’s conceptualizations of illness is, from this literature, to begin extrapolating message strategies for provider interactions with pediatric patients. However, the stage approach, its credence and subsequent application to yielding interaction strategies, has been subject to considerable question (Burbach & Peterson, 1986; Eiser, 1985a,b,c, 1988, 1989a,b; Eiser & Eiser, 1987; Eiser, Havermans, & Casas, 1993) and the efforts of Carey (1985) and Vygotsky (1962) have been suggested to be superior alternatives in advancing this literature (see Rushforth, 1999, for excellent history, discussion, and issues of debate concerning theorizing and researching about children’s conceptualization of illness). Interaction Strategies for Providers with Pediatric Patients

As mentioned, the impetus for understanding how children conceive and explain illness is to, theoretically, discern message strategies for interaction. This path of proposed achievement has fallen short of formable advances. For instance, as evident from the literature concerning children’s understanding of illness, researchers are continuing to grapple with theoretical and methodological issues to advance this domain of inquiry. Hence, attempting to discern patient-provider interaction strategies from the existing corpus of knowledge has been limited by previous theorizing (i.e., using stage approach), coupled with a relatively scant number of empirical investigations to discern strategies and effectiveness. However, the existing literature concerning interaction strategies for providers with children is informative theoretically, pragmatically, and heuristically. Interaction suggestions for providers can be categorized as (a) general strategies for interaction, (b) scripts, (c) use of tropes, and (d) vocabulary choice (detailed in Whaley, 2000). General Considerations of Pediatric-Provider Communication. Prior to interaction, providers are encouraged to consider the personality and experience, cognitive and mental level, religious, and cultural aspects of pediatric clients when considering message strategies of interaction (e.g., Bannard, 1987; Beales, Lennox Holt, Keen, & Mellor, 1983; Dorn, 1984; Eiser, 1985a,b,c; Elsberry & Sorensen, 1986). Whitt, Dysktra, &

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Taylor (1979), in addition, assert the importance of parental consultation in more accurately ascertaining these factors. Specific suggestions have been posited for providers’ assessment of pediatric clients’ degree of health understanding. For instance, providers could appraise children’s conception or representation of their medical condition by having these clients draw pictures or asking them to verbally depict what they believe is the nature of their illness (e.g., perceptions of what is making them sick and the organs involved; Bannard, 1987; Dorn, 1984). Eiser and colleagues (e.g., Eiser & Eiser, 1987; Eiser, Havermans, & Casas, 1993) asserted that determining a child’s experience and knowledge of his or her ailment, rather than age or Piagetian stage (e.g., Bannard, 1987), is a superior method of gauging the child’s level of illness understanding. In summary, the aforementioned message receiver variables are core to any goaloriented interaction and are especially useful to consider when providers design messages for the specific purposes of interacting with pediatric clients about health-related information. More contextual considerations are also essential to provider-pediatric interaction. Here, scripts appear to be of considerable interactive usefulness. Script/Schemata Use When Interacting. Research suggests that considering children’s health-related schemas and scripts of pediatric clients when interacting with children may prove helpful. For instance, Eiser, Eiser, and Lang (1989) found that when children were asked to depict what occurs when someone (a) doesn’t feel well, (b) goes to the doctor, (c) goes to the dentist, (d) goes to the hospital, and (e) has an operation, their scripts were generally in accord with the conventional succession of episodes or events (see Eiser et al., 1989 for age-related response differences). Further work concerning pediatric descriptions of objects and the sequencing of events during medical examinations and within hospitals reveals children’s knowledge is generally correct, events are sequenced accurately, and this increases with age (Eiser, 1989a,b; Eiser, Eiser, & Jones, 1990). Figurative Language Use When Interacting. Using comparisons (e.g., metaphors, analogies) is an intuitive and repeatedly employed message strategy for interacting with pediatric clients about health-related knowledge and events (e.g., Analogies Enhance Teaching Efforts, 1996; Bannard, 1987; Beales et al., 1983; Eiser, Eiser, & Hunt, 1986a, 1986b; Elsberry & Sorensen, 1986; Harmon & Hamby, 1989; Nichter & Nichter, 1986; Potter & Roberts, 1984; Whitt, et al., 1979). For example, Harmon and Hamby (1989) suggested something of the following when interacting about diabetes: In insulin-dependent diabetes mellitus (IDDM), the pancreas does not make insulin. Insulin is needed to carry glucose from the blood into the cells where it is used as energy. Since there is no insulin, the glucose stays in the blood and the cells begin to starve. One way to understand this is to think of the blood vessels as streets, the cells as houses, and the glucose as cars that travel on the street. Insulin acts as the driveways which allow the cars to leave the street and go into the garages. In IDDM, the cars stay on the street because there are no driveways (or insulin) to carry the glucose into the cell. (p. 413)

The suggestions concerning using figurative language to interact with children are dominated by anecdotal evidence. A limited number of empirical investigations have been conducted to examine the credence of these suggestions, with findings being tentative (e.g., Eiser et al., 1986b; Potter & Roberts, 1984; see Eiser et al., 1986a for essentials on developmental changes in children’s tropes to describe body parts). Whaley (1994), while

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supporting the use of figurative language when interacting with pediatric patients, noted that metaphors and analogies come in different forms with different pragmatic functions and suggested health providers to take heed of these complexities when interacting with children (see Eiser et al., 1986a, 1986b; Whaley, 1994, 2000, for the specific examples and concerns about using figurative language with pediatric clients). Vocabulary. Consideration of word choice is especially consequential when interacting about health-related material with children or when children are attendant. For instance, the literature commonly tells of the five-year-old girl who was told her knee was “inflamed,” which she understood as her joint was “in flames” beneath her skin. As such, she was frightened of the possibility that her leg would burn in its entirety (Beales et al., 1983). Hence, using such words as “dye,” “drawing” blood or fluid, or “burning” sugar (i.e., homonyms) should be done with caution and may require discussion for clarity of meaning when interacting with younger patients, especially (Bannard, 1987; Whitt et al., 1979). Interacting with Pediatric Patients—Conclusion

The current literature and research results concerning patient-provider interaction with children appears to be what Whitt et al. (1979) had in mind years ago when they suggested. In spite of commonplace admonitions to “speak at the child’s level” and “be accurate,” the clinical literature provides few illustrative examples for parents, physicians and pediatric nurses who seek to ameliorate children’s distorted perceptions of bodily disorders. This dearth of information is not entirely surprising. For all the literature on the clinical phenomenon, there is little theoretical structure to guide the task of providing explanations of illness which are both accurate and within the child’s cognitive capacity for understanding. (p. 331, italics added)

This continued state of affairs should by no means be a reflection on the scholars involved in this research. Investigating any communicative or social concern with children is an extremely challenging theoretical and methodical endeavor, in addition to the obvious taxing nature of the time, effort, and expense to conduct noteworthy studies. Those scholars who endure these factors and make laudable contributions (e.g., Eiser and colleagues) are to be commended and encouraged. Despite such efforts, however, there still exists a considerable amount of theorizing and investigations concerning patient-provider interaction strategies with children. Key to beginning systematic research concerning explaining illness to children is evaluating the literature (several scholars have) and performing the research. OLDER ADULTS

The prediction that those individuals aged 65 and over will constitute close to 22% of the population within the United States by the year 2030 (U.S. Senate special Committee on Aging, 1991) has heightened the awareness among scholars, practitioners, and “ordinary folks” that our society is becoming increasingly more mature. This aging of America has spawned many myths centered on the notion that the process of growing old cannot possibly be a positive experience and surely will be a time of great sadness,

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depression, and failing physical capacities. Quite to the contrary, social scientific research focusing on the physical as well as the psychological well-being of older adults has shown that the aging process can be accomplished with high levels of good health, with close and very satisfying personal relationships and can be a time of great personal fulfillment (Nussbaum, Pecchioni, Robinson, & Thompson, 2000). At the same time, it is quite apparent that older adults require access to a much larger number of health care services than do younger individuals and that the demographic trends point to an even greater demand of appropriate and effective health care services by these older adults in the coming years (Beisecker & Beisecker, 1996). For instance, Manton and Suzman (1992) speculated that the number of physician visits by older adults will double by 2040, with the greatest increase in physician visits coming from those over 75. Health communication scholars can no longer ignore the fact that a rather large percentage of health care is currently and will in the future be directed toward the special needs of an aging population. The Special Health Needs of Older Adults

Older adults suffer from more chronic or long-term illness than do younger adults or children and that percentage increases with age (Burham, 1974; Eisdorfer & Cohen, 1980; U.S. Census Bureau, 1996). In addition, as we age past 75, we are more likely to present several chronic conditions to the physician simultaneously. The most common of these chronic conditions include heart problems, arthritis and rheumatism, visual impairment, diabetes, hearing impairment, and hypertension (National Center for Health Statistics, 1990). Stahl and Feller (1990) reported that even though older adults do suffer from more chronic diseases than do younger adults, most older adults manage these diseases quite well and can continue to live quite well. Acute illnesses or short-term health problems such as broken bones and influenza are not more likely to occur within older adults. However, when an older adult does suffer from a broken bone or from the “flu,” it will take a significantly longer time to recover and there is a much greater chance of serious complications emerging from the acute illness than there are within a younger population (Nussbaum et al., 2000; Wilder, 1974a, 1974b). The mental health of older adults has received increased and rather intense scrutiny from both medical researchers and the popular press, in some part, because of the increase in reported cases of Alzheimer’s disease. This may reflect the media attention given to former President Ronald Regan and his struggle with Alzheimer’s. Nevertheless, Gatz, Kasl-Godley, and Karel (1996) reported that only about 1% of individuals between the ages of 60 and 70 suffer from some impairment in mental functioning, with this percentage increasing to about 25% for those 85 years of age and older. The occurrence of dementia or chronic brain disorders such as Alzheimer’s, as well as the severity of these mental disorders, does appear to increase with age. Notice that the percentage of older individuals suffering from impairment of their mental capabilities is nowhere near the 100% or even 50% level that would be the result if the myth of a perfect correlation between growing old and severe loss of mental capabilities were true. Depression has often been identified as the biggest mental health problem facing the elderly (Nussbaum et al., 2000). However, Holzer, Leaf, and Weissman (1985) reported that depression is no more common among noninstitutionalized older adults than among younger individuals. Gatz et al. (1996) reported that depression, anxiety disorders, and schizophrenia affect about 5% of the noninstitutionalized population of older adults and

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that this percentage is significantly smaller than the percentage of younger individuals suffering from the same mental health disorders. Much like the physical health problems affecting older adults, mental health problems in old age are rather complex and can lead to much more serious health problems that are often life threatening if not managed appropriately. Age-Related Cognitive Changes

Cognitive psychologists have studied the age-related changes in cognition and have linked these changes to our ability to communicate effectively (Nussbaum, Hummert, Williams, & Harwood, 1996). Susan Kemper and her colleagues (Kemper, 1992; Kemper, Keynette, Rash, O’Brien, & Sprott, 1989) have documented declines in working memory capacity and processing speed that affect syntactic and discourse processing abilities for older adults. In addition, older adults are plagued more than younger adults by problems in retrieving proper names (Burke, MacKay, Worthley, & Wade, 1991; Crook & West, 1990). It should be noted that age-related declines in language production, language processing, and name retrieval do not affect older adults equally. Wingfield, Wayland, and Stine (1992) suggested that, while it may be true that younger adults are generally better able to recall information than older adults, these same older adults appear to achieve a coherence in interpreting informationally rich statements in a way that is qualitatively different and possibly “better” than younger adults. Older adults may learn to use their limited processing abilities more efficiently than younger adults and thus minimize the physical cognitive declines associated with the aging process. In addition, when older adults are asked to produce narratives in an experimental condition, these narratives tend to be more interesting and clearer than narratives produced by younger subjects (Kemper et al., 1989). Presbycusis and Verbosity

Age-related hearing loss, presbycusis, has been studied quite extensively for the past three decades (Villaume, Brown, & Darling, 1994). Current conceptualizations of presbycusis focus not only on the decrease in hearing sensitivity experienced by older adults but also on the reduced ability to understand speech in terms of distinguishing among phonemes and ultimately meanings. It is a fact that older adults are more likely to have some degree of hearing impairment than younger individuals. Whereas surveys estimate a 5% rate of hearing impairment for young adults, older adults experience a hearing impairment rate of 25% up to 40% (Villaume et al., 1994). Presbycusic listeners experience greater hearing loss for high-frequency than for low-frequency tones. “Diminished sensitivity for these higher-pitched sounds has significant implications for how elderly persons may apprehend the content of speech by detecting, discriminating, and recognizing words, phrases, and sentences” (Villaume et al., 1984, p. 85). Gold, Andres, Arbuckle, and Schwartman (1988) conceptualized off-target verbosity to describe the talk of older adults who produce extreme amounts of irrelevant speech. Offtarget verbosity is characterized by not only an abundance of speech but also by a series of loosely associated verbalizations that stray more and more from the original topic. Gold, Arbuckle, and Andres (1994) reported that from 16% to 21% of the older population can be labeled as speakers with off-target verbosity. Villaume et al. (1994) speculated that the daily functioning of older adults with high levels of off-target verbosity can be

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negatively affected by the reactions of others who grow fatigued and become irritated by the disjoined talk. In addition, off-target verbosity may lead to conclusions that the older adult with off-target verbosity is not functioning competently. Institutionalization

At any one point in time, approximately 4% of those individuals aged 65 or older live in long-term care facilities (nursing homes) (Administration on Aging, 1998). Such a figure may be misleading since about 20% of all older adults will eventually die within a nursing home (Kastenbaum & Candy, 1973). The relocation of a frail older adult to a nursing home can be quite stressful. Nussbaum et al. (2000) have discussed the lack of participation by the older adult who is being relocated, the physical condition of the older adult, the lack of sufficient physical, psychological, and social care within the longterm care facility, the “interactive starvation” within the facility because of the rules that dominate the nursing home environment, and the support provided by the family as important factors associated with a successful transition to a long-term care facility. Beyond the social-psychological factors associated with residing within a nursing home, the United States remains one of only a few civilized countries that does not have a government-sponsored long-term care policy. The lack of this policy creates a financial burden for the older resident or the family who cares for the nursing home resident that almost certainty leads to impoverishment. Nussbaum (1981, 1983) investigated the communicative behavior of residents within nursing homes. He concluded that residents within nursing homes live in a world of near “interactive starvation” created by things such as the architecture of the facility, strict rules that forbid talk between staff and residents, the overuse of medication that “knocks out” residents who could communicate effectively, and conversational topics that concentrate upon disease or events within the nursing home. Stereotyping and Ageism

Robert Butler (1969) coined the term ageism to connote the wholesale discrimination against all elderly individuals. From language that refers to older adults as “geezers,” “goats,” “coots,” or “hags” to corporate policies that force early retirement due to myths about productivity and aging to misdiagnoses based upon mistaken assumptions of the human aging process, ageism can be a substantial barrier to successful aging. Mary Lee Hummert and her colleagues (Hummert, 1994; Hummert, Shaner, & Garska, 1995; Hummert & Nussbaum, 2000) have focused their research on identifying the stereotypes that individuals hold toward the elderly. The most commonly held negative stereotypes held by others toward older adults include older adults as severely impaired, despondent, shrewish/curmudgeonly, and reclusive. Positive stereotypes include goldenager, perfect grandparent, and John Wayne conservative. Both interactive context and the characteristics of the older adult will activate the stereotyping process. The Communication Predicament of Aging Model has been proposed by Ryan, Giles, Bartolucci, and Henwood (1986) to describe how younger adults are affected by ageist stereotypes during intergenerational interactions. In an attempt to accommodate the older interactant, the younger interactant may change his or her communicative behavior toward the older interactant in ways that may be quite detrimental to the self-concept of that older adult. Patronizing speech directed toward older residents of nursing homes is one form of communication behavior predicted by this model.

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Medicare and Managed Care

Medicare is an entitlement program for adults 65 years of age and older and some individuals who have disabilities. Medicare was established in the 1960s to provide quality, lowcost health care to all older adults. The Health Care Financing Administration administers Medicare and sets all reimbursement rates to hospitals as well as to health care providers. Since the early 1960s, Medicare operated, for the most part, as a fee-for-service plan. The federal government recognized that health care costs related to Medicare were growing much too fast. The Balanced Budget Act of 1997 established Medicare + Choice plans, the only HMO/managed care option for older adults (additional Managed care plans such as PPOs will soon be available as well). The Balanced Budget Act was passed in an attempt to cut federal reimbursements for Medicare in an effort to rein in out-of-control health care costs. Feder and Moon (1998) reported that as of 1998 more than six million older adults participate in managed care through the Medicare program. The greatest benefit within a managed care system can be for those patients (most notably the elderly) who are particularly vulnerable to chronic conditions, who rely on more than one provider, who can benefit from preventive services, and whose health status can use effective management. The promise of Medicare + Choice offers the potential for quality health care with reduced costs for both older adults and all tax payers. The promise of the Medicare system has in some part been realized. Older adults are living much longer, healthier lives in part because of Medicare. However, the cost overruns are too much for many politicians and tax payers to bear. Many politicians and economists (such as those in the Concord Coalition) are suggesting that our country can no longer afford Medicare and are seeking massive reforms that question why older adults should receive this entitlement. In addition, the shift from a fee-for-service operation toward managed care does not sit well with providers or some older adults with incomplete understandings of the managed care process. In addition, a recent trend to cancel managed care service to older adults within rural areas because of low reimbursement rates is causing great alarm. Finally, the oft-cited “problems” of managed care such as lack of health care provider choice, limited referrals, and very minimal interaction time with the physician are magnified with an older population. The Health Care Provider–Older Adult Relationship

Each of the issues discussed thus far within this section of the chapter concerning health communication and older adults ultimately affects the “special” relationship older adults have with their health care providers. From the numerous chronic conditions the older adult presents at the medical encounter to the issue of institutional and individual ageism to the Medicare system itself, the health provider–older adult relationship is quite unique. Excellent literature reviews of this interaction appear elsewhere (Haug & Ory, 1987; Beisecker & Thompson, 1995; Nussbaum et al., 2000), nevertheless, several important factors that play a significant role in effective communication within the health care provider–older adult relationship need to be discussed. First, as Beisecker and Thompson (1995) and Nussbaum et al. (2000) reported, older adults are typically satisfied with their medical encounters within the health care system. Factors such as whether older adults feel that their needs are being addressed by the physician, whether they have received sufficient emotional support from the medical staff, whether the physician or a nurse has discussed appropriate treatment, whether medical interactions are appropriately long and not rushed, and whether physicians interact utilizing

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appropriate immediacy behaviors and physically attend to the patient are all related to higher satisfaction levels with medical encounters among older adults. Second, an older patient’s compliance with a treatment regimen can be a significant problem (Haug & Ory, 1987). This is especially true given the multiple chronic conditions and the subsequent complex drug treatments older adults are expected to follow. Coe (1987) found that much nonadherence to treatments within the older population may be due to a lack of understanding of the proper instructions on what to do with the medications, rather than a willful noncompliance to appropriately follow the physicians directives. Beisecker and Thompson (1995) concluded that the research clearly supports the relationship between effective communication within the older patient–physician interaction and older patient adherence with medication regimens. Third, the interaction between older adults and their health care providers may be significantly different than similar interactions with younger adults. Older adults have been found to ask fewer questions, need longer interactions to ask important questions regarding their health, give less information to the health care provider, and are much less assertive than younger adults within a medical encounter. In addition, research by Adelman, Greene, and Charon (1991) found physicians to be more condescending, abrupt, and indifferent toward their older patients when compared to their younger patients. This pattern of difficult interactions between older adults and their younger physicians fits quite nicely into a general interactive difficulty found within intergenerational interactions (Williams & Nussbaum, 2000). Nussbaum et al. (2000), Williams and Nussbaum (2000), and others have placed some of the blame for these ineffective, intergenerational interactions onto both the ageist attitudes held by health care providers and the willingness to believe these negative attitudes and accept this less than appropriate behavior on the part of the older patients. Fourth, older adults are often accompanied by a family member or friend to the medical encounter. A physician who is expecting a dyadic medical encounter is now placed into a triadic encounter. The companion can significantly change the dynamic of the medical encounter. Often, the companion is more assertive than the older patient. The companion will ask more questions, will cause the medical encounter to last significantly longer, and will expect more information regarding the health of the older patient than the older patient normally seeks. Research by Labrecque, Blanchard, Ruckdeschel, and Blanchard (1991) and Glasser, Prohaska, and Roska (1992) indicated that physicians provide more information when a companion is present and that the companion can solicit a “better explanation” from the physician concerning the health status of the older patient. In addition, Morgan and Zhao (1993) reported that companions can help the older patient to comply with appropriate medical regimens. Finally, interdisciplinary care teams are quickly becoming the normal care providers for older adults who are in need of continuous care for extended periods of time (Nussbaum, Pecchioni, & Crowell, in press). These care teams are often led by a primary care physician, who may be trained in geriatric medicine, and made up of professionals such as social workers, nurses, nutritionists, physical and occupational therapists, psychologists, and a pharmacist. These interdisciplinary teams typically meet once every two weeks to discuss each older patient and to determine an appropriate plan for care. Efficient and effective meetings of the team are dependent upon communicative skills not often taught in these particular disciplines. In addition, family members and in some instances the patient are called into the team meetings to provide additional information or to help in the decision-making process. Once again, this setting can be very intimidating not only for the family members and the older patient, but also for many of the

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health professionals who are of lower status and may not feel free to voice an opposing opinion. Effective small group communication skills can be an essential ingredient within the process of effective delivery of health care within these interdisciplinary teams. WOMEN’S HEALTH COMMUNICATION

Dr. Richard M. Glass, in his foreword to Whaley’s recently edited volume Explaining Illness (2000), notes that “this book . . . concerns the complexities involved in communicating and understanding explanations for illness among different age groups, cultures, and individuals. These are issues of great importance for physicians and other health professionals and also for patients, which includes all of us” (p. xi). Whereas most of the recent discussions of gender differences in communication lead us to the conclusion that alleged, substantive behavioral differences between women and men have not been empirically validated (e.g., see Canary & Emmers-Sommer, 1997) and that women and men, regardless of John Gray’s popular notion, do not hail from different planets, there is nonetheless a need to discuss women patients as a special audience for health care communication and women doctors as unique professionals. The existence of at least three medical journals, Women and Health, Women’s Health Issues, and the Journal of the American Medical Women’s Association, in addition to several recent publications by health communication researchers (Gabbard-Alley, 1995, 2000; Beck, Ragan, & Du Pre, 1997; Parrott & Condit, 1996) attest to this need. It arises from two primary factors in addition to women’s unique reproductive health care needs: the historical treatment of women by the medical profession and the special challenges for women in health care interactions. Historical Treatment of Women by the Medical Profession

As the history of women has been fraught with inequality, so too has the history of women’s medical care. Numerous researchers have pointed to the problems women traditionally have faced in seeking medical care, problems ranging from the medicalization of natural reproductive processes, such as childbirth (and hence the performance of frequently unnecessary surgeries, i.e., hysterectomies and caesarean sections), to the overprescription of valium and other tranquilizing drugs for the alleged mental health problems of women (problems that historically have been dismissed by male physicians as women’s hysteria, even when legitimate physiological and psychological symptoms were present) to the exclusion of women from clinical trails (such that many recommendations for the treatment of heart disease, several cancers, and other illnesses can be made assuredly for male patients only, given that women were excluded from the research programs and clinical trials that led to these recommendations) (see, for example, Corea, 1977; Fisher, 1984, 1993, 1995; Todd, 1989, 1993; and West, 1984, 1993). While it is true that life expectancy for females is approximately 7 years longer than it is for men, women also experience more health problems than men and seek a physician’s care far more frequently. This is most likely due to sociological rather than to biological reasons, since women are socialized to find the “sick role” more socially acceptable than men do (Gabbard-Alley, 2000). But while women engage more frequently in health care interactions than do their male counterparts, these interactions may look different from men’s health care interactions; moreover, these differences can affect women’s health care outcomes in substantive ways.

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Women’s Health Care Interactions

In her recent reviews of health communication and gender, Gabbard-Alley (1995, 2000) points to several differences in the communication patterns of female and male patients and female and male physicians. While no research studies exist that have uncovered the effects of differential communication patterns on female and male patients’ health outcomes, it is possible that such patterns may yield important consequences for women’s and men’s health. Gabbard-Alley (1995, 2000) notes that there continues to be a concern about whether gender should even be considered as a variable in health communication research. Yet meta-analytic studies conducted by Hall and her colleagues (Hall, Roter, & Katz, 1988; Hall et al., 1990) discovered that gender was a significant variable for some behaviors in health care encounters. For example, male and female physicians give more information to female than to male patients (Hall et al., 1988, 1990). Female patients ask their physicians more questions and talk more than male patients (Wallen, Waitzkin, & Stoeckle, 1979; Waitzkin, 1984, 1985), presumably because women are more concerned with and more knowledgeable about health issues (Wallen et al., 1979; Coope & Metcalfe, 1979; Buller & Buller, 1987). At least two studies found that women patients receive more time, more explanations, and more nondiscrepant responses from their physicians than men do (Waitzkin, 1984, 1985). The preceding findings might suggest that women patients are advantaged over their male counterparts in health care interactions. Yet other researchers point out that although women ask more questions than men, health care providers tend to give shorter and less technical answers to women’s questions than to men’s (Wallen et al., 1979). Gabbard-Alley (1995) suggested that the greater information received by women might be a function of their more frequent requests for information, not the amount of information volunteered by physicians. In her most current review of the literature in gender and health communication, Gabbard-Alley (2000) pointed to a study (Bernzweig, Takayama, Phibbs, Lewis, & Pantell, 1997) that suggested that male pediatricians give more information to boys and female pediatricians give more information to girls; moreover, “male physicians engaged in the least amount of conversation with girls in substantive medical communication” (pp. 152–153). She also cites Meeuwesen, Schapp, and van der Staak (1991) who found that both male and female physicians are more attentive to male patients. Gabbard-Alley (1995) concluded: “Overall, these mixed findings show that although women spend more time involved in communication acts in health contexts, for whatever reasons, their concerns are taken less seriously than are those of men” (p. 39). Several other researchers concur with Gabbard-Alley that girls and women may be short shrifted in medical interaction, particularly those feminist scholars who, in their investigation of health care encounters between women patients and male physicians, note that these physicians trivialize or dismiss women’s health concerns in the micropolitics of interaction (e.g., Corea, 1977; Davis & Fisher, 1993; Fisher, 1986, 1991, 1993, 1995; Todd, 1989, 1993; Todd & Fisher, 1993). These scholars believe that male-female power imbalances in the macrostructure of our society get reflected and reified in such microstructures as health care interactions. For example, Todd’s (1989) analysis of communication interaction between women and their male physicians found that physicians uttered all of the orders and requests in health care encounters. Beck et al. (1997) noted the empirical support for more symmetrical interactions between female doctors and their patients than between male doctors and their’s (Smith Du Pre & Beck, 1996; West, 1984). Other studies suggest that nurse practitioners, generally female, may interact with their

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patients in less dominant, more equitable ways than male M.D.s (Beck & Ragan, 1995; Drass, 1988, Fisher, 1995; Ragan, Beck, & White, 1995). Differences in Communication Styles of Male and Female Physicians

In Gabbard-Alley’s (2000) review of the effects of gender on health care communication, she pointed to several notable differences in the communication styles of female and male health care providers: (1) female physicians spend more time with patients than their male counterparts and engage in more communication (Roter, Lipkin, & Korsgaard, 1991; Bernzweig et al., 1997); (2) female physicians give more statements of objective information than male M.D.s (Meeuwesen et al., 1991), communicate with more taskfocused exchanges, e.g., question asking and information giving (Roter et al., 1991), and ask more questions having biomedical content than male physicians (Hall, Irish, Roter, Ehrlich, & Miller, 1994); (3) female physicians use less technical language or jargon than males (Gabbard-Alley, 1995), while male physicians use more interpretations and advisements than females (such strategies being used to control the patient’s behavior by making judgments about the patient, labeling his or her behavior, and giving him or her advice, commands, and suggestions) (Meeuwesen et al., 1991); (4) female physicians spend more time in the discussion of family information or social matters (Bertakis, Helms, Callahan, Azari, & Robbins, 1995) and, in general, have more psychosocial content in their communication with patients than male physicians (Hall et al., 1990; Roter et al., 1991). In accordance with this last finding, Gabbard-Alley (2000) also reported that female physicians disclose more (Meeuwesen et al., 1991), make more use of partnership communication (Meeuwesen et al., 1991), use more facilitative responses to patients (Hall et al., 1994), and spend more time developing rapport with patients, as well as giving patients more information about the history and nature of the illness (Bernzweig et al., 1997). Overall, Gabbard-Alley (2000) concluded that both female physicians and female patients are more effective communicators than their male counterparts in health care interactions. Yet, according to Du Pre (2000), other research reports do not reveal marked differences in the ways that female and male physicians communicate with their patients. She noted in her review of physicians’ communication styles the following differences: women M.D.s display more interest in patients’ social and psychological worlds, possibly due to their training as primary caregivers, e.g., pediatricians, family practitioners, and so on (Roter et al., 1997; Novack et al., 1997); female M.D.s are more likely than their male colleagues to suggest preventive health screenings (Novack et al., 1997); and female medical students are more egalitarian than their male classmates (Crandall, Volk, & Loemker, 1993). Du Pre (2000) cautioned that “gender is only part of the story. . . . Medical socialization, professional constraints, and personal style may mitigate differences between male and female speech” (p. 184). Gabbard-Alley (2000) noted that the context of the health care interaction and the sociological gender rather than the biological sex of the health care provider are confounding variables that must be examined “before any strong general conclusions can be drawn concerning how the gender of the patient or physician affects the communication interaction in the medical visit” (p. 162). Thus, cultural expectations and gender–role stereotypes continue to shape our beliefs that there are significant differences in women’s and men’s communication behaviors in health care and in all contexts, despite equivocal empirical findings. Based on the research summaries above, challenges for women patients in health care encounters are possibly augmented when the provider is male, particularly if a woman

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has been socialized to believe that men are more powerful than women in the culture at large and that M.D.s are more powerful than their patients. If, in addition, women patients practice traditionally “feminine” behaviors, such as politeness, compliance, and nonassertiveness in their medical interactions with male physicians, they are even more unlikely to participate in the partnership model of health care advocated by several researchers as optimal (Thompson, 2000; Beck et al., 1997; Sharf & Street, 1997). As Beck et al. (1997) noted, “such interactional patterns [those comprised of traditionally feminine verbal and nonverbal behaviors] contribute to a dynamic where the patient relinquishes her status as an active participant and becomes a passive object of medical attention” (p. 21). Beck et al. (1997) noted further that some women’s proclivities to play an inactive and nonassertive role in their health care interactions (as well as some M.D.s’ sexist treatment of their women patients) have disadvantaged them in several key areas: they lack the medical information they need for good health, they do not take advantage of preventative health screenings, such as mammograms and pap smears, and they frequently have been misdiagnosed. Although more than one-half of U.S. women use their OB-GYNs as their primary physicians, apparently few of these M.D.s offer their patients basic counseling on such health issues as osteoporosis, physical abuse, and mental health (American College of Obstetricians and Gynecologists, 1993). With regard to preventive screenings, Lurie et al. (1993) discovered that less than one-half of surveyed internists and family practitioners practiced American Cancer Society standards in conducting pap smears and breast examinations; interestingly and alarmingly, doctors under 38 years old screened the least for these diseases. Women who are elderly, have lower incomes, and are non-Caucasian are particularly vulnerable in this respect; these women are the least likely to receive adequate health information and preventative screenings (Fox, Siu, & Stein, 1994; Landen & Lampert, 1992; National Institutes of Health, 1996). In this age of health consumerism, women patients are responsible for educating themselves about their bodies and the health concerns they uniquely face. Yet if a woman’s socialization encourages silence and compliance in the face of male authority figures, her being armed with health knowledge will not necessarily produce the additional health information and preventative screenings that she needs from her M.D. Women must empower themselves to assume a partnership role in their health care interactions, to actively, persistently ask for the exams and tests that an M.D. may be reluctant to perform or order. (The current practice of managed care makes this achievement even more difficult, as physicians are monetarily rewarded by some insurers’ contracts for NOT ordering what the health maintenance organizations deem as unnecessary tests.) Beck et al.’s (1997) recent book on women’s health communication suggests, through an examination of discourse in several contexts of women’s health care—a public university health facility, an Indian health clinic, a female family M.D.’s office, a Catholic hospital, and a privately owned, for-profit hospital—that patients can indeed demonstrate the speech behaviors that create partnership, that enable them to be coparticipants in the multiple goals of health care encounters: diagnosis, treatment, education, relationship. The premise of this book is that health care interactions, rather than being institutionally prescribed by traditional roles for patients and providers, are instead unique, emergent social constructions, shaped by the communicative activities of both caregiver and patient. Since provider and patient display and achieve their multiple goals for the health care encounter through their verbal and nonverbal communication, such communication behaviors can be learned and refined, both by health care practitioners and by patients.

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Conclusions

The historical treatment of women, both in health care and in other settings, as well as the unique challenges women face in health care interactions mandate a consideration of women patients as a special audience for health care providers. Yet both medical students and women patients must be better educated for their respective roles in health care encounters before a patient-centered, partnership model of health care can be achieved. In an age of medical consumerism, women must empower themselves not only to be knowledgeable about their health care but also to take interactive risks in their health care encounters: to question their M.D.s about recommended surgeries that might prove unnecessary, even when questions are discouraged; to ask their health care providers for the time needed to discuss their health concerns beyond the presenting symptom; to voice assertively their dissatisfaction when they believe their medical complaints are being trivialized; and, finally, to seek other health care providers’ care when current practitioners are unyielding in their authoritative, patronizing styles of interaction. Concomitantly, medical students and practicing M.D.s must be trained to adopt partnership communication patterns with their patients, particularly with their female patients. While female physicians are more likely to engage in this pattern of interaction with both their male and female patients, and while the larger numbers of female students now enrolling in medical school (42% of entering medical students were female in 1998, according to the American Medical Association) will eventually promote equity in the gender distribution of M.D.s, male doctors continue to be in the vast majority of medical practitioners: the AMA (1998) projects that whereas 33% of U.S. physicians will be female by the year 2010, only 19% were female in 1994. Although many male doctors practice patient-centered medicine and are well attuned to their female patients’ unique medical challenges, more and more women patients are seeking female M.D.s and special centers for women’s medical care. According to Dr. Justine Trott, president-elect of the American College of Women’s Health Physicians (a group of about 250 physicians nationwide), “Women’s health is not just about women, it is about viewing health and well-being from the perspective of women” (Zibart, 2000, p. 1). Trott critiques the current medical model for its promulgation of the myth that, since women’s and men’s physiologies are identical, save for their respective reproductive systems, women and men thus should present the same symptoms for the same diseases and respond to treatments in virtually the same manner. It has been only recently acknowledged, for example, that women present with markedly different symptoms than men in their experiencing of coronary artery disease. Whereas “common knowledge” has told us that a heart attack is signaled by excruciating chest pains and intense chest pressure, apparently many women experience myocardial infarction with far milder symptoms. “Unless physicians are trained to recognize these differences and respond to them, they are not adequately providing the health care women need and deserve,” says Trott (Zibart, p. 1). Thus, she is heading an effort to develop a medical school curriculum around women-specific physiology that will result in an independent specialization for “women’s health,” as we have done for pediatrics, geriatrics, and internal medicine. Whether a “women’s health” medical specialty is required for optimal health care for women, or whether both male and female physicians merely need to become more conscious of women’s unique physiology and psychology and women patients’ attendant needs for patient-centered health interactions, it is highly probable that the practice of

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health care in our future will attend more to women’s health needs than it has in the past. This, we trust, will promote better health care for both women and men. CONCLUSION

Children, older adults, and women are often confronted with a multitude of unique health care dilemmas. In many ways, these children, older adults, and women offer the most interesting, the most challenging, and the most frustrating of health care opportunities for providers. In many of the same ways, children, older adults, and women present health communication scholars with a complex yet fascinating context with which to study how the medical establishment attempts to communicate effectively in their quest for highquality care. As has been mentioned in the above text, while we do know that each of these populations of patients requires special attention because of its age, gender, or numerous physical, psychological, or social factors that are age- and gender-related, very little “special attention” has been given by clinician educators to modify the interactive behavior of health care professionals that specifically focuses on improving communication with patients who are children, older adults, or women. If nothing else is certain, it should be quite clear that a child does need communicative competencies on the part of the professional provider to help him or her better understand and cope with a serious illness. A woman does need the male physician to spend more time on basic preventive counseling and to better adapt to the traditionally less assertive nature of this women patient. The older adult does need the physician to understand the multiple chronic disorders that affect the him or her while simultaneously communicating competently with a companion. Health communication research is only beginning to isolate and locate the communicative circumstances and opportunities that unique populations of patients bring to the examining room. The quality of care provided to children, older adults, and women will be improved, at least to some extent, by future health communication researchers identifying how these populations demand more competent communication interactions and then suggesting how both patient and provider can enter into a more effective health care interaction. REFERENCES Adelman, R. D., Greene, M. G., & Charon, R. (1991). Issues in physician-elderly patient interaction. Ageing and Society, 2, 127–148. Administration on Aging. (1998). Profile of older americans 1998. [Online]. Available: http//www.aoa.dhhs.gov/aoa/stats/profile. American College of Obstetricians & Gynecologists. (1993, October 29). Poll shows women rely on OB-GYNs for primary care (news release). Washington, DC: Author. American Medical Association. (1998). [Online]. Available: http://www.AMA-ASSN.ORG/. Analogies enhance teaching efforts. (1996). Patient Education Management, 3, 143–144. Bannard, J. R. (1987). Children’s concepts of illness and bodily function: Implications for health service providers caring for children with diabetes. Patient Education and Counseling, 9, 275–281. Beales, J. G., Lennox Holt, P. J., Keen, J. H., & Mellor, V. P. (1983). Children with juvenile chronic arthritis: Their beliefs about their illness and therapy. Annals of the Rheumatic Diseases, 42, 481–486. Beck, C., & Ragan, S. L. (1995). The impact of relational activities on the accomplishment

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III Social and Community Health Issues Alicia M. Dorsey

As the breadth of chapters in the present volume attests, the field of health communication has expanded greatly over the past two to three decades. As the chapters in the previous sections demonstrate, although we have identified many important links between communication practices and health, there still exists a wealth of unanswered questions related to this complex relationship in traditional medical settings, such as health care facilities, or within the context of a health care provider–client interface. In addition, although consistent findings related to the role of mass media in influencing health behavior exist, there are also an infinite number of questions yet unanswered related to the role of health messages transmitted to a variety of target audiences through mass media channels or a host of new technologies, as outlined in the section following this one. These sections of the present volume certainly highlight the mainstays of the field of health communication. However, recent years have seen a broadening of contexts within which scholars investigate the inherent relationships between communication and health. Two such contexts are highlighted in the present section of this handbook. First, over the years we have seen a heightened level of activity focused on the community context in attempts to address “local” health and public health-related issues. There has been an emerging recognition, particularly within underserved and hard-to-reach areas, that perhaps the most hopeful health interventions are those planned and executed by communities themselves. The ultimate effectiveness of this process of coming together as a community to tackle specific health concerns—separating the symptoms of a problem from the actual sources of the problem, identifying strategies for addressing these key issues, and negotiating resources to support the efforts—clearly is predicated on the emergent communication practices within and throughout the community. This unique and vital context has only recently been a focus of extensive communication investigation. A second evolving context for health communication investigation involves a closer examination of the role of informal talk within the context of social relationships on our health and well-being. We have long recognized the power of social support. However,

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only in recent years has communication scholarship begun to attempt to examine and document the complexity and power of social contact in health and illness. The five chapters presented in this section explore these relatively new and certainly fruitful domains of investigation. They collectively examine the wide range of contexts within which both formal and informal communication practices influence the health of individuals and communities. The chapters also collectively challenge researchers to continue pursuing applied research in our efforts not only to better understand the role of communication in health, but also to identify specific strategies for improving the overall health of individuals in society. OVERVIEW OF THE CHAPTERS

The first three chapters within the unit explore the complex yet necessary act of engaging in community-based activities in efforts to promote health and healthy behaviors. In his chapter “The State of the Art and the State of the Science of Community Organizing,” James W. Dearing examines the gulf between the extant community-organizing literature and the emergent community-organizing practices. He highlights the importance of adopting a more holistic, social ecological approach to community change in both our examinations of problems facing communities as well as potential changes. Similarly, Clifford W. Scherer and Napoleon K. Juanillo explore both the theory and practice of community participation in efforts to understand and manage risk within community settings. This chapter provides both an overview of important aspects of community involvement as well as the evolution of risk assessment and risk communication. The third chapter examining community-based strategies for health communication highlights the importance of working with “marginalized” groups. Here Leigh Arden Ford and Gust A. Yep outline many of the differences between working in and working with communities in efforts to communicate about health with unique populations. Beyond the goals of providing an overview of present theory, research, and practice related to this area, this particular chapter strives to sensitize researchers and practitioners to the complexities of sociocultural, economic, and political contexts within which health communication efforts must be positioned. Each of these three chapters presents a strong case for the importance of actively engaging community members in efforts to promote health and healthy behaviors. They very clearly provide a realistic picture of the challenges of not only engaging in communitybased health communication research, but also in facilitating community-based action. The second context explored in the collection of chapters to follow is that of social relationships. Both chapters examine the role of informal or social interaction in the health and illness of individuals. Terrance L. Albrecht and Daena J. Goldsmith provide an overview of the prominent literature on social support and social networks and their impact specifically on individuals’ health and well-being. Finally, Rebecca J. Welch Cline provides a new look at the role of “everyday interpersonal communication” in health. This particular chapter uses social influence as a theoretical framework for exploring the link between everyday talk and health, specifically regarding HIV/AIDS.

10 The State of the Art and the State of the Science of Community Organizing James W. Dearing Ohio University

The practice of community organizing can change quickly. Practitioners react—sometimes instantly—when they perceive that some aspect of what they do could produce better results if modified. When people are not being persuaded, the appeal is altered. If no one is showing up, new points of contact are tried. If a program officer can be convinced, a different approach is tried. Good practitioners are masters of trial and error and experimentation. Their decisions are based on personal experience with the health problem, knowledge of the community in question, memory of previous social change initiatives, and advice from practitioner-colleagues. Occasionally, codified book knowledge from their formal training plays a part in determining strategies; more often, it does not (Dearing et al., 1996). For them, knowledge resides in the community. Community organizers are social change artists. The state of good practice is the state of the art. Research about community organizing as accumulated in scholarly journals and books changes slowly. The studies take a long time to conceptualize, fund, conduct, and publish. Then other scholars have to read the publications and use them to inform their own work. Researchers are trained to be skeptical and seek validation of concepts and relationships from multiple studies. Good researchers are masters of caution and are meticulous about variation. Their decisions are based on what has been tested before and carefully reasoned hunches about what should work and why. For many scholars, knowledge resides in the literature. The state of good research is the state of the science. The purpose of this chapter is to describe the state of the art and the state of the science of community organizing. I do this by focusing on what Coleman (1973) considered the major distinction among theories of change: Whether the locus of change is vested in the social conditions that give rise to a problem, or in the individuals who experience the problem.

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Most of the current scholarship about community organizing, the purposive stimulation of organizations and or of individuals in order to improve certain conditions experienced in a community, is concerned with (1) individual attitude and behavior change campaigns or (2) community empowerment through grassroots initiation and activity. Attitude and behavior change campaigns, the traditional province of communication campaigns, typically involve institutional sources of expertise in the form of external change agencies or local technical professionals who seek a degree of community sponsorship so that the subsequent effort can be labeled “community based” whether there is much authentic community involvement or not (Labonte, 1997). Most behavior change campaigns identify problems as the responsibility of individuals in a community and the solutions to those problems as existing elsewhere, with change experts, who guide campaign development. This type of community organizing is what Rothman (1970) termed social planning. Currently at least as dominant is scholarship about community and individual empowerment through grassroots organizing. This scholarship, termed by some as community building (Walter, 1997), is often normative in its appeal for scholars to take action in the name of community development. Grassroots organizing scholarship identifies the causes of problems at the level of institutions (for example, unresponsive local government administrators) and solutions at the level of individuals, specifically self-organizing community residents. This is analogous to what Rothman (1970) referred to as social action. So scholarship about community organizing resides in two distinct camps, with sharply divergent notions of what community organizing means. And this scholarship is not as far along the learning curve as we might like. According to Berkowitz (2000), writing in the Handbook of Community Psychology, this is even the case among community psychologists who have been in the forefront of much of the research about community organizing: Psychology does not have an established base of direct evidence from experimental or controlled field studies of community organization that informs us, with precision, as to what kinds of organizational attempts work best, and how. (Italics in the original) (p. 335)

Meanwhile, the state of the art—actual organizing—is rapidly moving elsewhere. Community change practitioners, including the deterministic efforts of those with the resources to fund homespun efforts at community development (chiefly private foundation decision makers), are increasingly turning to social ecology interventions. These attempts at community development, not represented in Rothman’s (1970) seminal typology of community organizing, identify both the causes and the solutions of community problems at the level of institutions and organizations (see Table 10.1). Individuals in communities often have important, meaningful roles in these initiatives, but this type of community organizing is not based in individual-level phenomena. Whereas scholars such as Abraham Wandersman, Robert Goodman, and Allan Cheadle (Wandersman, Goodman, & Butterfoss, 1997; Cheadle et al., 1994) are contributing to our collective knowledge of whether and why social ecology–based initiatives might work and just how we ought to measure them, there are large gaps in our understanding of social ecology initiatives. Opportunities abound for health communication scholars and practitioners to make important contributions to our collective knowledge about community organizing from a social ecology perspective.

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Locus of Problems and Solutions in Community Organizing The Solution Is . . . In Individuals

In Institutions

The Problem Is . . . In Individuals

Self-Help

Behavior Change Campaigns

In Institutions

Grassroots Activism

Social Ecology Interventions

Table adapted from Medved et al. (2001).

COMMUNITIES AND ORGANIZED SYSTEMS

A community is an informally organized set of loose associations among residents (McKnight, 1994). Based on intrinsic and shared interests, people gather in voluntary association (de Tocqueville, [1835] 1945). As citizens (a political term meaning “one who controls”) rather than clients (with the Greek root “one who is controlled”), residents are free to be creative, communicate together, and express feelings, subject to normative influences. This use of the term community is consistent with classical definitions in the community development literature that identify people, place, social interaction, and psychological identification as necessary elements of a community (Christenson & Robinson, 1989). Communities coexist with organized systems (such as local health care systems), the latter that function to control resources in order to produce standardized practices and outcomes.1 Organized systems depend upon consumers (i.e., clients) to buy and or use their products and services. For example, a local education system may include public and private schools, school districts and policy boards, state, county, and city jurisdictions that provide funding and maintain oversight of school curricula and performance, parentteacher organizations, and teacher unions as well as children and their parents. McKnight (1994) argued that when encroached upon by efficient, powerful organized systems, voluntary associations (our shared experience as community members) contract; pervasive organized systems can lead to unhealthy communities by replacing citizen consent with controlled consumers; rather than behaving as active citizens, residents behave passively as clients. This disequilibrium, the same condition that scholars, practitioners, and social change advocates have noted as a crisis of civil society (Putnam, 2000), is the targeted locus of change of so-called civil investing, community building, and comprehensive community initiatives, which seek to strengthen communities and their voluntary associations in order to keep powerful and efficient organized systems in check. Walsh (1997) refered to more than 50 initiatives sharing this approach. 1 These interorganizational systems are analogous to what Kaufman (1959) referred to as “development in the community” as opposed to “development of the community” (p. 8). Wilkinson (1991), a student of Kaufman’s, used the terms social field to describe organized systems such as the local education system and community field to refer to community associations. Such theorizing draws on Lewin’s (1951) concept of field theory, that an individual’s action is determined by the environmental forces surrounding him or her. Lewin derived his concept from physical properties of magnetic fields.

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COMMUNITY ORGANIZING

For many people, community organizing brings to mind images of the lone and reluctant crusader, a person with no particular technical skills who has been personally and irrevocably wronged by a powerful and shady organized interest. Many such David and Goliath images are grounded in experience. Activists, working in association with other like-minded individuals, form grassroots social movements that can force the reconsideration if not outright redress of social problems by making them public, political issues, moving from marginalized complaint to mainstream institutionalization (Gamson, 1992; McCarthy & Zald, 1977). Community organizing through grassroots social movements is not easy; such efforts often languish for years. But the steps necessary to create a successful grassroots social movement are fairly well-codified. More problematic and at least as prevalent is community organizing that involves organized interests (such as the U.S. National Cancer Institute) that are external to the community(ies) in question. External sponsorship raises a host of problems concerning citizen participation (Cheadle et al., 1997; Dearing, Larson, Randall, & Pope, 1998; Perlstadt, Jackson-Elmoore, Freddolino, & Sturdevant Reed, 1999). It is then that the adversarial process of community change that characterizes social movements is necessarily overlaid with the need to collaborate and negotiate as the interests of an external change agency are fitted, often poorly so, with those of local residents and organizations, some of whom support a change objective, others who do not (Payne, 1999; Selznick, 1949). External change agencies bring money and access to technical resources that communities cannot hope to amass themselves. Community members—organizations and individuals both—bring the promise of participation, local legitimization, and sustainability that external sponsors cannot hope to buy. Matching the interests, needs, and wants of external sponsors and community members increases the complexity and heightens expectations to the challenge of community organizing, especially for large-scale community initiatives that involve coordination and/or standardization across multiple sites, require extensive citizen learning to participate, and in which external sponsors presuppose genuine citizen interest (Medved, Morrison, Dearing, Larson, Cline, & Brummans, 2001). STATE-OF-THE-SCIENCE COMMUNITY ORGANIZING

Theorists of purposive community organizing have drawn heavily on the field’s practical history in social work in America. Rothman’s (1970) much cited typology distinguished among: (1) locality development, the building of group identity and community cohesion; (2) social planning, in which rational action is undertaken to address needs identified by technical experts; and (3) social action, to redress a problem but more fundamentally shift the balance of community power so that the problem would not again arise. Locality development was a collaborative response by community organizations; social planning, a top-down, usually government-led approach to the identification and remediation of community problems; and social action, a bottom-up, grassroots approach based in confrontation that exposed social injustice, such as filthy water, nonexistent sewer systems, and unpaved roads in minority neighborhoods. Practitioners and scholars delineate time-ordered steps for achieving changes. Bracht and Kingsbury (1990), for example, proposed the following stages and each stage’s key elements:

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1. Community analysis (consisting of defining the community, collecting data, assessing community capacity, assessing community barriers, assessing readiness for change, and synthesizing data and setting priorities); 2. Design and initiation (consisting of establishing a core planning group and selecting a local organizer/coordinator; choosing an organizational structure; identifying, selecting, and recruiting organization members; defining the organization’s mission and goals; clarifying roles and responsibilities of board members, staff, and volunteers; and providing training and recognition); 3. Implementation (generating broad citizen participation, developing a sequential work plan, and using comprehensive, integrated strategies); 4. Program maintenance-consolidation (integrating intervention activities into community networks, establishing a positive organizational culture, and disseminating results); 5. Dissemination-reassessment (updating the community analysis, assessing effectiveness of interventions/programs, charting future directions and modifications, and summarizing and disseminating results).

Other scholars identify similar steps. Wagenaar, Gehan, Jones-Webb, Toomey, & Forster (1999), in writing about community mobilization, listed seven: Community assessment, creation of a core leadership group, development of a plan of action, attraction of mass support, implementation of the action plan, organizational maintenance and change institutionalization, and evaluation of intervention and outcomes. Evolution in scholarly thinking regarding community organizing parallels what has occurred in the field of international development studies over the last 40 years. Whereas scholars initially saw a large role for more industrially developed countries and international aid and change agencies in furthering the development of less industrially developed countries, empirical studies of international development did not support modernization hypotheses (Mowlana & Wilson, 1990). The negative and unintended consequences of technologically led change (such as malnutrition due to the introduction of new rice strains and new processing techniques) led development scholars, especially those from less industrially developed countries, to conceptualize active citizen participation and individual control over life circumstances as the keys to development, regardless of whether a society or community “modernized” or not (Bordenave, 1976). Villagers could, for example, reject urban sprawl, snarled traffic, and air pollution, but still choose to eradicate schistosomiasis. An internal locus of control— within one’s community as well as within oneself—came to define what development should mean (Freire, 1990; Galtung, 1980). Like the field of international development, literature about community organization has now come to strongly emphasize self-help and self-determination as preferred routes to community organization. While some community organization researchers such as Bracht and Kingsbury (1990) and the mobilization perspective of scholars such as Wagenaar et al. (1999) integrate meaningful roles for community residents on the one hand and external change agencies and technical experts on the other, the field of community organization is now dominated by a more strident scholarly belief that change initiation, ownership of change efforts, and benefit as a result should be of and by community residents, to the exclusion of external change agencies and other technical experts (such as local epidemiologists or public health officials) unless the latter’s role is limited to that of listener, facilitator, and discussant (Pilisuk, McAllister, & Rothman, 1996).

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This resident-centric perspective of community development has been termed community building. A number of recent theorists of community organizing focus on the building of community from within. Their emphases on empowerment, feminist perspective, marginalized groups, and conflict-based social action to redistribute power within communities can be understood as reactions against models of community organization that centrally involve external change agencies and direction (as opposed to support) from trained specialists, as well as the inauthentic forming of “partnerships” between powerful change agencies and relatively disempowered communities (Labonte, 1997). Community building as an alternative to or a type of community organizing is roughly parallel to the progression of thinking in the field of international development, where the responsibility for change (i.e., those who must initiate and organize the change effort) in communities has moved from system and policy levels of society to the level of individual community members, while the objects of change (the practices or beliefs of the units targeted to change) have moved in just the opposite direction, from the individual level to the institutional level. Currently, it is difficult to find examples of public health interventions that do not emphasize the personal responsibility of individuals and/or the importance of community participation in intervention (Guttman, 2000). In summary, the state of the science of community organization and international development studies has largely moved from (a) institutional responses directed at changing individual behavior, as in traditional communication campaigns, to (b) individual organized responses directed at changing institutional behavior, as in grassroots social movements. STATE-OF-THE-ART COMMUNITY ORGANIZING

Practitioners and their sponsors (especially including program officers in private foundations) are experimenting with a systemic approach to community improvement that identifies the locus of both problems and of solutions at the level of institutions. Concerned by research suggesting a disintegration of the public sphere in communities (Bellah, Madsen, Sullivan, Swidler, & Tipton, 1985; Putnam, 2000), and inspired by cases of successful neighborhood renewal through the establishment of supportive social environments (Schorr, 1997), these state-of-the-art practitioners and their benefactors are testing a social ecology perspective as a basis for community improvement. Proponents of these initiatives seek shifts in interorganizational relations, social norms, and public and organizational policies (Mathews, 1997; Ridings, 1997) that, if successfully altered, may operate systemically to change the structure of a local system and/or of a local community so that its capacity to function effectively is increased and its network of social relations is improved, which may then support the achievement of substantive objectives such as better health (Baker et al., 1994). The Annie E. Casey Foundation provides a case in point. In 22 of America’s most troubled big city neighborhoods, Annie E. Casey is investing up to 500 million dollars over 10 years to strengthen the social infrastructure of neighborhoods so that children and their families have a better chance of intellectual, social, and economic prosperity (Sommerfeld, 1999). The program, Making Connections, takes a general rather than project-specific approach to neighborhood improvement. Many grant makers have concluded that piecemeal efforts supported by foundations in response to single-issue requests from grantees demonstrate little, if any, sustained improvement after grants end. After-school care, for example, is inextricably tied to issues of employment, single-parent families, K-12 school policy, and neighborhood opportunities for children. Funding a project that seeks to improve after-school care by only addressing one of these issues may achieve project objectives

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but not affect the problem of after-school care because all the other factors that contribute to kids arriving home to an empty apartment persist. Lasting behavior change is unlikely when the intervention in question does not address the social environment that sanctions risky behavior. Making Connections involves community activists, social service groups, religious institutions, employers, and families in the expansion of job opportunities, the reinforcement of neighborhood institutions, and a strengthening of social networks, so that participants and others will come to newly value their collective efficacy as members of neighborhoods. From a social ecological perspective, researchers have studied community coalition action (Goodman, Wandersman, Chinman, Imm, & Morrissey, 1996; Wandersman et al., 1996), public policy (Milio, 1988), institutional policy and routines (Wagenaar et al., 1999), and community and organizational indicators of normative conditions (Cheadle et al., 1994; Cheadle, Wagner, Koepsell, Kristal, & Patrick, 1992). The operative assumption of a social ecological perspective is that individual behavior is importantly determined by environmental opportunities and constraints, as well as individual perceptions of socially shared norms (Goodman et al., 1996; Kelly, 1966). Changes in social ecology can be recorded by collecting data about, for example, grocery store sales of low-fat foods, prevalence of graffiti, number of small business start-ups, number of community gardens, homicide and suicide rates, pedestrian traffic, drug use, and theft incidence (Cheadle et al., 1992; Gladwell, 2000). When a social ecology perspective drives the development of a change initiative, substantive change (such as better individual health) is not the primary objective. Rather, proponents seek to convene local community partnerships that in turn give rise to a variety of projects so that individuals and organizational decision makers in the community perceive broad-based public concern for a general issue-set. The emphasis of a social ecology health initiative is often on the supportive conditions that will enable progressive action by agencies and individuals to improve community and personal health. These supportive conditions are of two types: (1) a community’s capacity to collectively take action, and (2) social capital that exists between community members and organizations. Social ecology health initiatives typically seek to increase community capacity and improve social capital. COMMUNITY CAPACITY

Community capacity is the sum and interaction of several types of assets held within a community. Together, these assets represent a community’s capacity for betterment. Building one or more dimensions of community capacity, with an emphasis on systemic change, is the particular goal of social ecology initiatives. The results of a two-day symposium convened by the Centers for Disease Control and Prevention in 1995 (Goodman et al., 1998) identified dimensions of community capacity as citizen participation and leadership, skills, resources, social and interorganizational networks, sense of community, understanding of community history, community power, and community values. These dimensions, and hence the concept of community capacity, were meant to be inclusive of three other popular concepts in the published literature about community improvement: community competence, sense of community, and empowerment (Parker, Eng, Schulz, & Israel, 1999; Plas & Lewis, 1996). To this list of dimensions should be added collective efficacy, a group’s shared belief in its conjoint capabilities to organize and execute the courses of action required to produce given levels of attainments (Bandura, 1997). Collective efficacy is important to community

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performance in strengthening capacity assets because when people hold stronger beliefs about their abilities as a collective, they will be more likely to achieve collective desired outcomes. Efforts to improve community capacity typically involve community members who come together in some variant of a partnership, coalition, or alliance. The purpose of these groups is to share information, coordinate resources efficiently and make decisions (Sigmond, 1995), and implement projects, each of which is an attempt to improve some aspect of a broadly defined problem (such as community environmental quality). These community partnerships or coalitions act as decision-making bodies to prioritize problems, consider and propose strategies by which each project can best achieve goals and objectives, generate new resources, delegate responsibility, implement projects, assess progress, and sustain the progressive actions they have begun. Community partnerships are an especially open type of organization that exist to marshal resources and commitment, implement plans, and achieve goals (Wandersman et al., 1997). Successful completion of coalition or partnership tasks requires community stakeholders to know one another and communicate on a basis of shared trust and to be competent to carry out project activities. It is a community’s capacity to organize that is often most at issue in social ecology health initiatives. SOCIAL CAPITAL

The dimensions of community capacity that are most important for achieving systemic change in a community are citizen participation and leadership, resources, social and interorganizational networks, and community power. Collectively, these four dimensions of community capacity represent a community’s social capital. Social capital can be defined as resources embedded in a social structure that are accessed and or mobilized in purposive actions (Lin, 1999). A community’s social capital is both its network of relevant social relations as well as what is available through that network for the use of network actors. Availability of social capital is dependent on one’s position within a network; network structure both enables and constrains one’s opportunity to access and use resources. While social capital is often written about as a “public” good (Coleman, 1988), clearly some actors have differential access to more of it than others, based on who they are and who they know (Portes & Landolt, 1996). Social capital can be put to a range of productive uses, from good to bad. A community high in social capital can be a community that is insular, closed, and isolationist (Portes & Sensenbrenner, 1993). A network high in social capital can be a network that actively excludes others. Communities as a whole benefit the most when their networks are diverse, inclusive, flexible, horizontal (linking those of similar status or in similar structural positions), and vertical (linking those of different status or in different structural positions); tie together organizations; and span other communities (Flora, 1998). So the social capital goal for a community is not simply more of it—increased frequency of interorganizational interactions or increased trust in interorganizational relationships, for example—but rather improved social capital, by connecting certain segments of the community that had previously not had access to information and other sorts of resources. In communities, social capital can be operationalized as the informal and formal relationships that span people, organizations, and agencies, and what is available through them, such as obligations, expectations (i.e., norms), and trust that can come to characterize those relations (Coleman, 1988). Informal relational assets include the personal contacts who can be accessed through community members’ social networks, as well

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as the routinized but not institutionalized relationships between people in agencies and organizations. Formal relational assets include interagency agreements, memorandums of understanding between organizations, and contracts (Wall, Ferrazzi, & Schryer, 1998). The social capital accumulated through these relationships can be of two types: It can result from “reciprocity transactions,” when people do favors for others, and from “enforceable trust,” when people act in response to system or community norms that prescribe their action for the benefit of others (Frank & Yasumoto, 1998). Seen in terms of social capital, community problems, such as crime or teenage pregnancy, become problems of community disorganization. Organization—strengthened relationships and better use of existing resources—becomes the solution (Skogan, 1988). IMPLICATIONS FOR STATE-OF-THE-SCIENCE COMMUNITY ORGANIZING

Externally led initiatives that take a social ecology approach to strengthening social capital and increasing community capacity represent an innovation in community organizing. To health communication researchers, they present the following challenges: 1. Many of the difficulties of community participation in initiatives that involve an external change agency concern community stakeholders’ reactance toward the imposition of a rational planning model typically imposed by external sponsors who are interested in demonstrable rapid progress. For them, progress is defined as moving from one set of decisions or activities on to another so that prior decisions and activities are not revisited if at all possible. Axinn and Axinn (1997) proposed that the historical record of community development (as well as their own experience as development scholars and community-organizing practitioners) supports a cyclical model in which communities and other units of analysis modulate between conditions of underdevelopment, appropriate development, and overdevelopment. This type of recursive model of community change not only implies that decisions about change will be revisited, but also that decisions will be made anew, time and time again, as new community participants cycle into community decision-making processes and as changing environmental conditions bring new issues to the fore in communities. Such a perspective is an important corrective to models of community organizing that detail a progression of step-by-step organizing activities. Many community members do not accept strict linear notions of planned change, especially those members most prized by change sponsors (Medved et al., 2001). The high degree of rational planning that defines time-ordered modeling runs counter to the orientation of community members who are not professionally trained. While some community participants readily appreciate the familiar efficiency of linear thinking—the paid representatives of public health departments and private businesses—the infected, affected, and traditionally underrepresented participants in the collaborative planning coalitions often prefer to behave as if they are party to a long-running dialogue in which participants need to periodically reestablish their commitment, demonstrate trust, and renew social bonds, just as in other facets of life. That is, community participants to change initiatives tend to treat their involvement as a dynamic relationship rather than an institutional prerogative, even when institutional partners are involved. 2. The relationships that are at first structured and then that emerge linking external change agencies and communities together in the change process are as important to study as is what then happens in the communities where interventions are put into the field. Nearly all the literature about coalitions, partnerships, and collaboratives focus on the relations among community stakeholders as they begin to work collectively, or not (Kreuter, Lezin, & Young, 2000), at the

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expense of studying in any serious way interactions and evolving relations between external change agencies and communities, which, in many ways, is a broader overarching concern (Cheadle et al., 1997). It is only by studying communication at this intersystemic level that key issues of control, community ownership, implementation support and technical assistance, and sustainability and institutionalization can be better explained. 3. The social ecology perspective on community interventions requires health communication researchers to use mixed-method research designs that are far more complex in their conduct, analyses, and interpretations than are single-method studies. If one is to capture the effects, for example, of personal networks and reference groups upon individual decision making, as well as model the effects of changes in local public policies on private businesses that newly delimit the health behavior choices of individuals, a health communication researcher may need command of sociometric analysis, psychometric and media consumption survey research, and nonreactive archival-based community indicators in order to piece together a composite of data that could fully test the social ecology perspective. Multiple methods may produce data that converge; more commonly, the researcher must explain discrepancies between findings across methods, which adds explanatory power to any analysis but takes more time and care (Jick, 1979). The implication here is a need for either (1) scholars who are comfortable and competent with multiple, often maximally different methods, or (2) scholars ready and willing to work in teams that bring together different sorts of specialists. My experience studying a social ecology initiative suggests that the research process required is quite like mounting a legal case, in which many sources of evidence are accumulated for the purpose of supporting statements and recommendations. 4. The reconceptualization of community competencies from process, progress variables to outcome, output variables has dramatic implications for health communication research. This change deemphasizes the demonstrable achievement of improved health status of individuals (which most campaign designs do not include sufficient time to capture even if they do occur) in favor of generic, relational variables that measure a community’s ability to organize. Like impact analysis, this shift will raise the level of analysis from the individual and group to the interorganizational system and the community. This shift implies change in data sources and data types as well as level of analysis and will necessitate health communication researchers with different skill sets.

IMPLICATIONS FOR STATE-OF-THE-ART COMMUNITY ORGANIZING

How do systemically directed, social ecology interventions like comprehensive community initiatives affect the practice of community organizing? 1. External change agencies play a major role in the change process. Their presence sets in motion a whole range of strategies to interest, persuade, and involve community members in the change objective that are not necessary when a change is initiated from within a community. Undoubtably, this dynamic complicates the task of the organizer. When an external change agency is involved, health communication practitioners can be viewed with pessimism by community residents as well as by local organized interests who may be less than convinced of the change agency’s motivations. Thus the health communication practitioner’s role becomes a persuasive one in addition to serving as intermediary between the external funder and local stakeholders, and organizing local participation. 2. When community capacities become the focal desired change, the purpose of the initiative can easily escape the comprehension of many community residents or simply not be considered to be important. Health communication practitioners can find and recruit passionate spokespersons for a cause who can, by virtue of their belief, convince others to expend the energy necessary to move an initiative ahead. But spokespersons will more readily be found for substantive social

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problems experienced in a community (i.e., migrant farm worker health and safety) than for amorphous objectives such as heightened trust, social support, and extended and diversified interorganizational relations. Practitioners will find it essential to envelop community capacity interventions in substantive projects to which residents can easily relate. 3. Practitioners who operationalize social capital concepts in ways that are meaningful and useful to individuals will ease their tasks of organizing. Disaggregated from collectives to the level of individuals, social capital can be operationalized as social leverage and social support (de Souza Briggs, 1998). Social leverage consists of valuable information that one can use to, for example, get a new job or find out about new opportunities (Granovetter, 1973). Social support consists of emotional and other resources that trusted others possess and share with friends, such as listening and commiserating, encouragement, transportation, gifts, or loans, to cope (Espinoza, 1999). The more tangible the effects of improved capacities can be made to individuals, the greater success organizers will experience. 4. Health communication practitioners should begin their work with serious attention to the outcomes that external change agencies are ultimately most interested in: sustainability and institutionalization of initiative objectives. These outcomes are possible for both the community capacity functions of coalitions and partnerships (such as more inclusive interorganizational networking) as well as for the substantive health improvement projects to which partnerships give rise (such as mobile dental vans for low-income neighborhoods). Thus practitioners must reorient themselves from expecting to work mostly with audiences at risk of illness or in need of disease prevention toward working with and between agencies and organizations that operate programs for people at risk and in need.

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Kelly, J. G. (1966). Ecological constraints on mental health services. American Psychologist, 21, 535–539. Kreuter, M. W., Lezin, N. A., & Young, L. A. (2000). Evaluating community-based collaborative mechanisms: Implications for practitioners. Health Promotion Practice, 1, 49–63. Labonte, R. (1997). Community, community development, and the forming of authentic partnerships. In M. Minkler (Ed.), Community organizing & community building for health (pp. 88–102). New Brunswick, NJ: Rutgers University Press. Lewin, K. (1951). Field theory in social science: Selected theoretical papers. New York: Harper. Lin, N. (1999). Building a network theory of social capital. Connections, 22(1), 28–51. Mathews, D. (1997). Changing times in the foundation world. National Civic Review, 86, 275–280. McCarthy, J. D., & Zald, M. N. (1977). Resource mobilization and social movements: A partial theory. American Journal of Sociology, 82, 1212–1241. McKnight, J. L. (1994). Two tools for well-being: Health systems and communities. American Journal of Preventive Medicine, 10(3), 23–25. Medved, C. E., Morrison, K., Dearing, J. W., Larson, R. S., Cline, G., & Brummans, B. (2001). Paradox in community health improvement initiatives: Communication and collaboration in a managed care environment. Journal of Applied Communication Research, 29, 137– 152. Milio, N. (1988). Making healthy public policy; developing the science by learning the art: An ecological framework for policy studies. Health Promotion, 2, 263–274. Mowlana, H., & Wilson, L. J. (1990). The passing of modernity. New York: Longman. Parker, E. A., Eng, E., Schulz, A. J., & Israel, B. A. (1999). Evaluating community-based health programs that seek to increase community capacity. New Directions for Evaluation, 83, 37–54. Payne, C. A. (1999). The challenges of employing performance monitoring in public health community based efforts: A case study. Journal of Community Health, 24, 159–170. Perlstadt, H., Jackson-Elmoore, C., Freddolino, P. P., & Sturdevant Reed, C. (1999). Citizen participation in health planning: A case study of changing delivery systems. Research in Sociology of Health Care, 16, 75–98. Pilisuk, M., McAllister, J., & Rothman, J. (1996). Coming together for action: The challenge of contemporary grassroots organizing. Journal of Social Issues, 52, 15–37. Plas, J. M., & Lewis, S. E. (1996). Environmental factors and sense of community in a planned town. American Journal of Community Psychology, 24(1), 109–143. Portes, A., & Landolt, P. (1996). The downside of social capital. The American Prospect, May-June, X3-21, 94. Portes, A., & Sensenbrenner, J. (1993). Embeddedness and immigration: Notes on the social determinants of economic action. American Journal of Sociology, 98, 1320–1350. Putnam, R. D. (2000). Bowling alone: Civic disengagement in America. New York: Simon & Schuster. Ridings, D. S. (1997). Philanthropy in action: Building community. National Civic Review, 86, 281–286. Rothman, J. (1970). Three models of community organization practice. In F. M. Cox, J. L. Erlich, J. Rothman, & J. E. Tropman (Eds.), Strategies of community organization (pp. 20–36). Itasca, IL: Peacock. Schorr, L. B. (1997). Common purpose: Strengthening families and neighborhoods to rebuild America. New York: Anchor. Selznick, P. (1949). The TVA and the grassroots. Berkeley: University of California Press.

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11 The Continuing Challenge of Community Health Risk Management and Communication Clifford W. Scherer Cornell University

Napoleon K. Juanillo Jr. University of Illinois, Urbana-Champaign INTRODUCTION

Progress in understanding and treating human disease has advanced to remarkable levels in recent decades. Understanding the relationship between lifestyles and health, the biology of the human body, development of designer drugs, alternative intervention strategies, and the genetic codes related to predispositions of various diseases have progressed; and they continue to progress at breakneck speed. As these advances are being made, it would appear that the level of uncertainty should decline, that individuals, groups, and communities should have more specific information on which to base health decisions, making not only easier decisions, but also more precise decisions about health and health protective behaviors. Ironically, this is seldom the case. Advances in medicine and other health sciences as well as in risk-assessment techniques have not necessarily resulted in decreasing the uncertainties we face as we resolve issues and questions about health. Einsiedel and Thorne (1999), for example, described the case of BRCA1, a gene identified as related to an increased chance of breast cancer. Rather than increasing certainty, the discovery of this gene has actually decreased certainty by increasing the number of questions needing answers. For example, questions now need to be answered specifying conditions under which the genetic code increases the likelihood of a particular type of cancer for a specific individual. At the same time there is increased uncertainty about how to identify susceptible individuals. Whereas our scientific and medical knowledge about health and disease has increased, health professionals and communicators are still frustrated because individuals do not behave “rationally”; they ignore medical advice, smoke, consume unhealthy diets, practice unsafe sex, and become overly concerned about what are, from a risk-assessment

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perspective, minor risks. Individuals may worry about the risks of West Nile Virus with family or friends as they continue to smoke, consume high-fat foods, or ignore their doctor’s instructions. It can be argued that scientific advances have provided us with more sophisticated techniques of detecting and assessing hazards. The scientific paradox seems to hold true in that scientific progress has not only increased our capability to detect potential hazards, but it also uncovers previously unknown hazards. As our understanding of the world grows exponentially, we are likewise confronted with uncertainties that leave considerable space for conflicting interpretation. This almost daily barrage of uncertainties and the widespread media coverage they generate have led some of us to view ourselves as the victims rather than as partakers and beneficiaries of the advances in medical and health science (Slovic, Fischhoff, & Lichtenstein, 1980). It ought to be clear, however, that the speed by which science uncovers new health hazards is not to be blamed for our inability to cope with risk information. Clearly, a critical issue that ought to be addressed is not about slowing down the science. What is really at issue is whether we have sufficient space to understand and talk about the specific prisms through which both the scientists/experts and the public view risk. Many of the disputes as well as charges of “irrationality” and ‘overreaction’ emanate from the dearth of forums that allow those involved to have an understanding of what constitutes their definitions of risk. It would indeed be unfortunate if the benefits from the advances and investments in the medical and health sciences would be less than optimum on account of one seemingly plain factor: poor communication. More than two decades have passed since the explosion of studies on risk-communication. Despite continued work in designing effective risk-communication strategies, we have moved only slowly toward even a feeble level of success. As a field of research, “Risk communication has undergone its own evolution” (Fischhoff, 1995, p. 137). Evidently, like any other scientific endeavor, each stage of exploring the dimensions of communicating risk has been accompanied by more complex questions and problems. Fischhoff (1995, p. 138) summarized the patterns and trends in the development of risk communication studies as follows: Stage 1 concentrated on getting the risk assessment right. “All we have to do is to get the numbers right,” to be able to make decisions related to risk. Stage 2 focused on issues of telling the public what the numbers were and explaining how they were determined. Stage 3 assumed that the need was to explain to the public what was meant by the numbers. For example, Johnson and Slovic (1995) reported on agency efforts to discuss uncertainties in health risk assessments aimed at reducing citizens’ perceptions of risk and to increase agency credibility. Stage 4 focused on comparative risks, explaining to the public that they’ve accepted similar risks in the past. Comparisons were made, for example between the risk from contaminated water and the risk from eating peanut butter (Fessenden-Raden, Fitchen, & Heath, 1987). Other literature explained that “one factor that inhibits public understanding of risk messages is that people often cannot easily relate the low—say, 1 in 10,000—risk probabilities presented to their everyday experience . . . thus this difficulty can be overcome by quantitative comparisons between familiar risks and less familiar risks” (National Research Council [NRC], 1989, p. 172).

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Stage 5 was exemplified by efforts to show the public that the risk of a new technology, policy or practice was “a good deal for them,” that the risk from the new activity was lower than a common risk such as eating peanut butter, for example. Stage 6 was the beginning of efforts to respect the public. During this time efforts were focused on clarifying and understanding different interpretations of words and phrases, and in simplifying terminology used by risk practitioners when talking with the public (Jardine & Hrudey, 1997). Stage 7 began with efforts to move the public into a position as a legimitate partner in the decision making. And finally, Fischhoff noted, Stage 8 advocates all of the above.

While some of these stages appear to be extremely naive, it is important to note that risk communication emerged primarily from a scientific and technical perspective. Engineers and scientists were frustrated in their attempts to build nuclear power plants, dam rivers, or institute public health policies and were searching for a way to explain to policymakers and the public that the risks were acceptable. Judging from Fischhoff’s outline, however, one could detect the imperative to surpass traditional processes of disseminating information based on purely technical assessments of risk and to move on to a phase that emphasizes a more inclusive and holistic assessment of risk. This finds resonance in Tinker (1996), who observed in health communication programs, a “growing recognition among Public Health Service agencies of the need for communication methods that move beyond the ‘bean-counting’ of information dissemination to include a variety of theoretical models for assessing the influence of health risk communication on health behavior change” (p. 197). Leventhal, Kelly, and Leventhal (1999) noted, in the context of cancer control, that risk perceptions have only a weak relationship to prevention behaviors. In fact, a wide range of studies have found only very weak or, at best, moderately weak behavioral change as a result of change strategies. These studies range from child immunization, AIDS, breast cancer screening, smoking, and heart disease to West Nile Virus and food safety (see, for example, Aspinwall, 1999; Basen-Engquist & Parcel, 1992; Borzekowski, Flora, Feighery, & Schooler, 1999; Brown, 1991; Kelly, Zyzanski, & Alemagno, 1991; Orlandi, 1996; Strobino, Keane, Holt, Hughart, & Bernard, 1996). Other studies have added considerable depth to our understanding of how individuals perceive risk and how these perceptions influence health behaviors. Included are studies examining the patterns of how the media and journalists construct meaning (Friedman, Dunwoody, & Rogers, 1986; Nelkin, 1987), the social amplification of risk (Kasperson et al., 1988), and the far-ranging psychological studies that have helped us better understand individual cognitive processes related to risk perceptions, risk estimates, heuristics, and others (see, for example, Slovic, 1992). For the most part, however, risk perceptions and behaviors have been studied almost exclusively as individual cognitive mechanisms in which individuals collect and process information, form perceptions of risk, and behave as atomized units unconnected to a social system (Lee, 1998; Rothman & Kiviniemi, 1999; Scherer, 2000). Even where the social aspects are recognized, these linkages are generally regarded as influences such as perceived social norms or as simple sources of information, much as the mass media are recognized as sources. Psychological approaches utilizing the idea of social systems generally assume that direct communication from other individuals will influence a specific person but that individual cognitions are still central to the formation and maintenance of attitudes and behaviors (Bovasso, 1996). This approach

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has yielded valuable insights into a number of mechanisms such as heuristics, faults in probabilistic reasoning, and optimistic biases. Psychological studies emerged early in risk communication primarily because communicators found it hard to explain why various audiences reacted in what seemed to be irrational ways. Why, for example, would communities accept a risk of one in a thousand in one situation but would be unwilling to accept a probability of one in a million in a different situation? Historically, policies and actions related to community health were often decided between government and industry experts. Industry responsible for soil, water, or air pollution would negotiate with the government regulatory agency as to what was acceptable. In other cases the health care industry would negotiate with government agencies as to what could be done to respond to a health crisis whether it was the result of human activity or a natural disaster. Rather quickly, however, public concern and opposition to resulting policies, regulations, and procedures grew. It became clear that solving disagreements between regulators, industry, and the public was difficult at best. Risk communication emerged as a way to begin explaining these policies to the public, and risk assessment emerged as the science to explain the probability of scientific uncertainty (Ohanian et al., 1997; Otway, 1987). Early risk-communication efforts focused almost exclusively on strategies for communicating to the public. Such rules as “speak clearly and with compassion” emerged as a way of more clearly communicating from the science community to the public. Some early risk literature even emphasized the need to “sell the public the facts.” The public, it was argued, needs persuasion, rather than education (NRC, 1989, p. 283). As a field of study, however, risk communication is rooted in the foundations of democracy. It embraces the assumption that for the public good, science must engage in its tasks (such as the estimate of public harm or the likelihood of harm) with a recognition that the outcomes have policy and behavioral implications (NRC, 1989; Otway & Thomas, 1982). The National Research Council (1989) noted that “to remain democratic, a society must find ways to put specialized knowledge into the service of public choice and keep it from becoming the basis of power for an elite” (p. 15). The underlying problem is often defined as lack of public understanding of risk or the public’s perception of risk (often defined as faulty) with the concomitant challenge to risk communication of making the message clearer, more persuasive, and more motivating. However, many decisions are under the control of officials, generally nonspecialists who are answerable to the public. Thus the communication of risks evolved from a need by scientists and risk-assessment experts to reassure and demonstrate to public officials and policymakers, as well as the public, that the science pointed to rational health protective public policies or behaviors. Research discourses about risk communication show a confluence of lessons learned about individual responses to risk and a progression toward empirical investigation of what actually concerns groups and communities and why (Bennett, 1999). Risk-communication studies now look at the concept of “rationality” in a broader sense as they consider both scientific and lay perspectives on risk and how a more interactive process might contribute to better understanding of risk and a more acceptable and rational risk management plan. Only recently, however, has there been work on the involvement of individuals in group participation strategies involving risk issues. Even these strategies, however, make tenuous assumptions about how the involvement of a small number of individuals may influence perceptions of the larger community. Rowan (1996) concluded that risk communication is most successful when individuals are empowered as opposed to when they are manipulated or coerced. It is the process of empowerment that may be central to achieving

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change. Lewin (1948), for example, suggested that motivation for change must move beyond simple cognition. Individuals, he argued, do not change simply because they have more information. Change, Lewin suggested, occurs when social norms change through a shared learning experience. It is the same phenomenon noted by Talcott Parsons (1951), in his classic work, that behaviors do not occur singly and discretely, they are organized in systems. Going beyond the study of group influence on health decision making, there are studies that suggest wholesale public participation in shaping health policies and decisions as a key component of health decision making and management. This philosophical foundation presents a strong argument for community participation in health policy decision making. The remainder of this chapter focuses on exploring the philosophical foundations for community participation in health policy decisions. Particular attention is given to case studies that illustrate unique aspects of community decision making and risk management and help build a theoretical foundation for community health risk management and communication. MAPPING THE ORIGINS OF RISK COMMUNICATION: INTEGRATING THE HEALTH RISK ASSESSMENTS OF COMMUNITIES

Until recently there has been a strong fundamentalist reliance on science as both epistemological and institutional forms that subordinate other important reflexive domains (Welsh, 1995). As a consequence, responses to and understanding of health issues have been largely dependent on what the experts say. Thus, science and public policy have had a functional relationship for a considerable period. Regulatory decisions, based on data generated through scientific research, have indicated a relationship that relies on the competency and legitimacy of the scientific system as a producer of knowledge. Logical consistency has become a necessity, and science is seen as possessing the capability to make predictions with precision, scope, and accuracy, including prediction of the consequences of risk-management decisions and policies. Science, at least, draws upon an externally recognized set of claims to authority and understanding whereas nonscientific understandings are not bound by these claims (Brunner & Ascher, 1992; Eden, 1996; Plough & Krimsky, 1987). Hence, scientific analyses and results have been primordial in setting the agenda, defining the problem, shaping and evaluating solutions, and justifying the legitimacy of health policies. This particular view of putting risk assessment and management in the hands of experts is not without basis in political thought. Philosophers such as B. R. Berelson, John Stuart Mill, Jeremy Betham, and Walter Lippmann argued for limited citizen participation. They claimed that involving citizens in day-to-day government affairs could impede the ability of technical experts to base decisions on their professional judgment. In addition, they felt that public involvement was costly and time consuming and could exacerbate conflict (Koontz, 1999). Managing risk through risk communication, in this context, is simply defined as a process by which government regulators and industry disseminate technical risk information and judgments of risk acceptability. The success of risk communication hinges on the degree to which public knowledge reflects or matches the technical rationality of risk and the extent to which popular behavior and attitudes are in harmony with scientific-technical values and principles. In this context, the social and cultural dimensions of risk are judged to be of marginal concern. Unfortunately, the elevation of so-called technical rationality as indispensable to health policy decisions has also meant downgrading the values, beliefs, and opinions held by

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the public. It is not surprising, then, to see a number of risk-communication studies suggesting the need to upgrade the level of the public’s scientific literacy as an approach to bridging the divide between experts and the public. This approach relegates risk communication to a simplified process of giving information. Public inputs are not a crucial factor in the process. It is, as Kasperson (1986) put it, an agency-initiated process that has for its goals “correcting misperception,” “educating the public,” “reducing conflict,” “easing implementation,” or “increasing legitimacy” (p. 278). Participation in risk communication, in this context, is one of co-optation—a means for maximizing rationality, a catalyst for implementing health-risk-management decisions, and a means for changing public attitudes and behaviors to conform to what the experts have determined as desirable. Facilitating the process of arriving at acceptable policies to manage health risk relies, to a large extent, on how public perceptions of risk are understood and incorporated in the overall risk-assessment process. In the ongoing discourse about health risk assessment and management, two issues have become clear: (1) Individual and community concerns and ideas about risk are multidimensional, and (2) the task of incorporating these varied perspectives is complex, if not difficult. Public judgments about risk, as evidenced by risk-perception research utilizing the psychometric and cultural approaches, have shown that lay judgments do not correspond with those of experts who manage hazards based on their quantitative assessments of risk (Renn, 1998). Undoubtedly, the varied facets of risk perception have sparked numerous theoretical and methodological debates in determining the constitution of individual and public perceptions of risk. The evolution of studies and knowledge about public perception of risk, however, has also led to a growing appreciation of the critical role of psychosocial and cultural factors that influence the public’s understanding and assessment of, as well as responses to, health risks. In dispelling the conventional reductive-objective paradigm of science that aims at “objective” and “universal” truths as determined by scientists and experts (Schwab & Syme, 1997), these studies offer fresh insights into the challenges policymakers face in integrating lay assessments into health risk management and communication. Whether each of these perspectives can yield solid empirical predictions and data may not matter as much as the new track toward which they are steering the discourse on risk assessment, management, and communication. Notwithstanding the disagreements over methods and concepts in risk-perception discourse, there is still a strong basis for assuming that the public goes beyond science-based risk information in making decisions about their health. The need for good quantitative data on public risk perception should not preclude the imperative to understand the ways people think about and respond to risk. In the context of the transscientific considerations that the public uses to make judgments about health risks, this chapter argues that risk-management and -communication processes should now focus more on integrating these different types of perspectives. This chapter discusses the key concepts in participatory processes and the public forums that allow for the articulation of issues, concerns, and opinions of those affected by health risks. Retracing the Arguments for the Transscientific Nature of Risk

The first category of these studies has shown that individual interpretations of risk are influenced by a number of factors. Guided largely by the methods in psychometric approaches based on the pioneering work of Slovic, Fischhoff, and Lichtenstein in the mid-1970s, these studies have focused on measuring the individual’s intuitive perceptions of risks. Social Theories of Risk by Krimsky and Golding (1992) provides a thorough

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discussion and synopses of different theories of risk as well as paradigms of risk assessment. This section of the chapter only provides a brief review of the major arguments relating to the two dominant social perspectives on risk (see Krimsky and Golding [1992] for further elucidation on these topics). The psychometric paradigm was a broad strategy that used psychophysical scaling and multivariate analysis techniques to produce quantitative representations or “cognitive maps” of risk attitudes and perceptions (Slovic, 1987). Under this paradigm, it is argued that an individual’s assessments of risk are driven by such dimensions as “perceived dread,” “involuntariness,” “immediacy of effect,” “controllability,” and “catastrophic potential” (Marris, Langford, & O’Riordan, 1998; Marris, Langford, Saunderson, & O’Riordan, 1997). This line of study suggests that there is a belief that natural risks are generally more acceptable than manmade risks. Ball, Evans, and Bostrom (1998) noted that in a forum on polio vaccine policy, an advocate for alternative therapy argued that immunity acquired after natural infection is often preferable to aftereffects induced by the vaccine. For some parents, the vividness of some vaccination aftereffects like fever and fussiness in their infants is enough to cause hesitation in their acceptance of the benefits of vaccinations. Many dread paralytic polio and other types of serious adverse events that they believe are caused by immunization, notwithstanding scientific or clinical data that indicate either no evidence or insufficient evidence to establish causation. Furthermore, media’s attribution to the diphtheria, tetanus, and pertussis vaccine (DTwP) as the cause of deafness in a former Miss America has only amplified the fears and imaginability of the alleged risks associated with vaccination (Ball, Evans, & Bostrom, 1998). Progressing from the emphasis on cognitive psychology in examining individual risk perception, the second category of studies has focused on the underlying social and cultural values and contexts associated with risk perception (Rogers, 1997). The cultural paradigm, which originates from the cultural theory developed by Mary Douglas and Aaron Wildavsky (1982), argues that the societal arrangements and institutions predispose an individual’s view of risk. Thus, going back to the earlier example of vaccinations, although public health experts and doctors may emphasize the general effectiveness of vaccines in clinical and statistical terms, parents making decisions about vaccination may perceive risks in broader religious, cultural, and personal contexts (Ball, Evans, & Bostrom, 1998). The ways people think about risk have emerged from social and collective interactions, are based on cultural rationalizations, and are embedded in and are manifestations of shared ideology (Earle & Cvetkovich, 1997; Hiskes, 1998; Wildavsky, 1987). In other words, risk perceptions are not a sole byproduct of individual interpretations, but are also influenced by the predominant worldviews or cultural biases in which the individual participates or identifies with such as hierarchy, fatalism, individualism, and egalitarianism. Hierarchists work best in social environments where authority is maintained. Their capability to take risk depends on the presence of authority structures that support these risks. Egalitarians view risk taking as a collective endeavor that does not allow any one sector of the community to take on less of the risk than others. Individualists prefer self-regulation and are more willing to take risks. Fatalists view risk as external to society and as such individuals or communities are not agents who can determine potential hazards. Hence, an “act is culturally rational . . . if it supports one’s way of life” (Wildavsky, 1987, p. 6). It is therefore reasonable to assume that the public’s assessment of health risks, the human body, sexuality, time, life, suffering, death, and disease are not just private experiences. All have an intrinsic social dimension. The health conditions in which they take

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place are often determined as much by cultural practices as by biological and environmental factors. Smoking, for example, though it has been assessed to be highly addictive and deleterious to human health, was generally accepted as part of social life as recently as 25 years ago. Similarly, the high incidence of modern-day scourges like AIDS, cancer, and cardiovascular diseases can only be understood in the context of new lifestyles and diet (Nakajima & Mayor, 1996). Public risk assessment that is based on cultural or communal worldviews leads us to consider the community as a potential determinant of how people make decisions about health risks and impresses upon us the importance of community-based interventions in health programs. Perhaps one of the clearest examples of the relationship between community-based and community-supported interventions is apparent in homeland security issues. If community food and water systems are to remain secure, every member of each community must not only understand and support the idea, but also actively participate. This development of a community culture to focus on community health and safety policies is not new, as will be pointed out. Along with cultural worldviews, risk perception is also determined by other social dimensions such as trust, blame, and accountability (Marris, Langford, & O’Riordan, 1998; Slovic, 1996, 1992). Public acceptance of health risk assessment is contingent on the perception of competence, objectivity, fairness, consistency, and credibility that the public holds for the sources of risk information (Renn & Levine, 1991). Moreover, public acceptance hinges on the extent of trust that the public holds in a regulatory body or industry. It also depends on the public’s experience with how these institutions have handled risk events in the past. For example, mistrust of the medical system by some African Americans has been identified as a barrier to optimal health care and participation in clinical trials, thus the Clinton administration’s formal apology for the Tuskagee Syphilis Study (Ball, Evans, & Bostrom, 1998). Not surprisingly, increasing public mistrust about health claims reflects the overall decline in public trust in scientists and experts, government officials, and most other sources of authority (Greenberg & Williams, 1999). Accordingly, public trust in the opinions expressed by friends, nonexperts, and citizens groups, and even concerned celebrities, seems to be increasing. Data from surveys have shown that confidence in government and industry has diminished considerably during the past 30 years (Peters, Covello, & McCallum, 1997). Whether recent events and the resulting public increase in trust in government represent a short-term change or a long-term credibility gain cannot yet be assessed. However, it seems to stand to reason that unless government agencies restructure their ways of involving citizens in the decision-making process, the gains may be short term. Negotiating Health Risk Assessment: In Search of Workable Forums in the Public Sphere

The ongoing debate on how to define health risks and what constitutes appropriate and acceptable health-risk-management policies can be classified as a contention between two dominant and contrasting types of language: (1) the scientific-managerial language, and, (2) the pluralist or communitarian language (Williams & Matheny, 1995). The current impasse is largely due to the competition between these languages, each one claiming proprietorship in rationalizing and articulating the dynamics of health regulation. Using empirical data from risk-perception studies, advocates for lay participation in health risk assessment and management claim that the scientific-managerial language cannot stand on the assumption that its methods are neutral and, therefore, capable of

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forming an objective basis for health risk assessment and management. They argue that the definition of public interests and the search of optimal policies cannot be left in the hands of scientific or technical experts who focus on health risk assessment based on the accuracy of laboratory research, disease surveillance, and epidemiological studies. They disagree with the notion that absolute standards of rationality can be invoked to assess the response to risk or that a single definition of what counts as rational behavior is achievable (Hiskes, 1998). Risk, from this perspective, is the product of constant interaction, not an immutable characteristic of an inanimate physical system (Hiskes, 1998; Jasanoff, 1993). Thus, it cannot be assumed that science can yield value-free results and information that are totally inseparable from political and social realities as well as the inherent struggles and conflict within the scientific community itself. On the other hand, those who speak on behalf of scientific health risk assessment argue that the pluralist language has failed to consider basic technical or scientific facts, thus defeating its own goals of balancing contending interests, providing due process to all valid public concerns, and devising holistic risk management policies. The public, it has been noted, fail to hold significant stores of scientific and technical knowledge that are useful for making sound decisions on policies (Pierce, Steger, Steel, & Lovrich, 1992). Advocates for scientific health risk assessment contend that risk evaluation that is informed solely by individual interpretation and cultural viewpoints does not constitute a legitimate basis for risk management. Moreover, they consider as quixotic all communitarian efforts in risk assessment and risk management, whereby the perspectives of affected sectors, both scientific and lay, are considered and incorporated into policy. In a society that is increasingly confronted by technically complex policy questions, issues have been raised about the feasibility of nurturing the democratic ideal of public control (Pierce et al., 1992). The complexity of some health risk issues like the AIDS epidemic or cancer may not lend itself to protracted processes of consensus building, and even then the compromises made in such discussions may not yield the best results in the long term. Unfortunately, however, the discourse about health risk has not gone beyond the reiteration of “scientific” and “cultural” positions in risk assessment. So far this debate seems to have only resulted in a strengthening of intractable epistemological positions that points out the inadequacy of one perspective to legitimize risk assessment and management and the weaknesses of the dialogic process itself (Juanillo, 1994). However, there can be no resolution if the discourse continues to run along the disputes of “legitimacy.” In lieu of pursuing the debate as to which perspective can adequately capture the foundation for risk management policy, it might be more beneficial as an initial step to recognize the underlying assumptions about the epistemological moorings of each language. The stubbornness of the expert versus lay rivalry that mars talks about sound policies may be due to the lack of explicit acknowledgment and discussion of these epistemological differences in the first place (Williams & Matheny, 1995). Recognizing that not any one language works toward “objectivity” but instead only provides us with legitimate tools for competing in a political dialogue will give way toward constructing a paradigm of policymaking that goes beyond the usual dichotomies between scientific (objectivist) and lay (relativist) perspectives. The data and insights generated by the studies on risk perception now serve as a useful building block for rationalizing health interventions that involve issue stakeholders in devising programs that benefit them. It is important to note that the emergence of so-called relativist perspectives in health risk evaluation is not just an offshoot of empirical research in the social sciences. The notion of public involvement in health risk assessment is also very much a product of the times. Increased access to information facilitated by new information and communication

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technologies has also enhanced the public’s awareness of the issues that affect their daily lives. As Thomas (1995) argued, “broader access (to information) undermines the centralized control of information that was a principal basis for centralized decision making” (p. 6). Consequently, for some sectors of the public, increased awareness has led to demands for involvement in forming decisions on how to resolve these issues (Thomas, 1995). The NRC of the National Academy of Sciences, in a seminal report on risk (Stern & Fineberg, 1996), suggested the need to integrate scientific analysis with collective and public deliberation in considering issues pertaining to risk. In contrast to the usual “decide-announce-defend” approach often employed by governmental agencies, the NRC has recommended integrating science-based risk assessment with formal and informal processes for collectively considering or discussing issues by a range of interested and affected issue stakeholders (Chess, 2000; Stern & Fineberg, 1996). Indeed, Chess (2000) contended that the discourse has moved from whether there should be public participation in health risk assessment and management, toward the imperative of “getting the right participation” and “getting the participation right.” Thus, worth pursuing are more pragmatic questions such as: (1) What processes can guarantee all-inclusive and open discussion of important, multiple, and possibly irreconcilable perspectives as well as legitimate concerns? (2) What are the means by which affected individuals or interest groups are able to acquire, process, and apply relevant information so that they can effectively participate in the discussion of complex issues relating to health risk? Research literature has yielded a number of insights that have proven useful in addressing questions on the processes and forums for public participation. In terms of participatory forums, some popular options have included: (1) key contacts, (2) public meetings, (3) advisory committees or councils, (4) citizen surveys, (5) citizen contacts, (6) citizen juries, and (7) negotiation and mediation (Chess, 2000; Thomas, 1995). Other more intense mechanisms have been developed, but have not been applied to risk or health situations. (See, for example, Greenwood & Levin, 1998; Maestro-Scherer & Rich, 2001b; Rich, Scherer, Maestro-Scherer, & Michell-Nunn, 2002). It has been noted, however, that a specific mechanism for participation does not, in or by itself, determine the outcome of a participatory effort. The timing and context of the participatory activity might be a better predictor of the outcome. Successful outcomes are more likely to happen when there is public involvement and consultation in the early stages of decision making such as during problem identification. Participatory mechanisms must be used in consonance with providing time for more interaction, information exchange, deliberation, and the development of mutual understanding among the diverse parties involved. Moreover, other contextual factors such as the history of the issue, cultural representations of the human body and disease, the level of conflict involved, and the nature of the health-risk dispute may also influence the outcome of the participatory activity, and consequently, the public’s approach to action, prevention, and treatment (Chess, 2000; Nakajima & Mayor, 1996). Three Cases of Community Involvement in Health Risk Assessment and Management: Actualizing the Ideal

A number of health programs have gained significant successes by increasing public participation and involvement in health risk assessment and management. A commonly described example is Finland’s North Karelia project on heart disease prevention in the 1980s, which was initiated and supported by the community (Schwab & Syme, 1997). Citizens petitioned for the intervention upon learning that their coronary heart disease mortality rate was the highest in the world.

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Focus on Kids. Another example is “Focus on Kids,” an intervention and research project targeting low-income, urban, African American preadolescents and adolescents. The project is built on the foundations of community partnership with a community advisory board (Galbraith & Ricardo, 1996). With the long-term goal of reducing HIV risk behaviors, the Focus on Kids project formulated varying short-term goals depending on the needs expressed by the community and incorporated community and family values, social influences, decision making, and interaction skills to address issues of sexual behavior, substance use, and drug trafficking (Galbraith & Ricardo, 1996). Community inputs were fused with initial project plans as community residents became involved in the project as “community ethnographers” and consultants, members of the community advisory board, and a youth board, and participants in focus group discussions. Overall, community members helped in the identification and recruitment of youth to take part in the project as well as in ensuring that the interventions were relevant in terms of timing, language, and culture. Thus, by grounding the project in the cultural constructs of the community and engendering public participation in the design and delivery of health interventions, the project team was able to reach a large number of youth, especially those at risk, and produce significantly increased rates of condom use and condom-use intention among the target groups (Galbraith & Ricardo, 1996). The PACE Project. PACE (Preventing Agricultural Chemical Exposure Among North Carolina Farm workers), a participatory health project involving migrant and seasonal farm workers—a poor and medically underserved population—addresses health concerns surrounding occupational exposure to agricultural chemicals (Arcury, Austin, Quandt, & Saavedra, 1999). The project engages a variety of segments of the farmworker community through a number of interactions such as establishing full partnership with the North Carolina Farmworkers’ Project (NCFP), a small, grassroots farmworker organization, a project advisory committee, community forums, public presentations, and formative research. PACE’s partnership with NCFP has resulted in the production of more practical and culturally appropriate training packages on pesticide safety and the development of the components of intervention. NCFP has also become, in some instances, the presenters of the interventions to farmworkers. The advisory committee for PACE brings together members of the farm groups (farmers and farmworkers) and the services group (health care workers and Cooperative Extension Educators). Through this forum, farmworkers are able to express their concerns and interact with farmers and provide critical evaluation of the feasibility and cultural appropriateness of the intervention. Similarly, the community farmworker forums, project presentations, and formative data collection represent other mechanisms used to generate opportunities for consultation, exchange of opinions, and sharing of experiences with and beliefs about agricultural chemicals. For the PACE project, one significant outcome of these participatory forums is that it has helped to bring together scientific and community perspectives and concerns. Far from diluting science, the involvement of affected stakeholders in health risk assessment has evidently resulted in even better science. As Arcury et al. (1999) argued, the community-expert partnership leads researchers/experts to valuable information that would otherwise be unavailable for ensuring that the interventions may be fully responsive to community needs and concerns. In this kind of arrangement, interventions are tailored to meet communities on the communities’ own terms. Community Involvement in HIV/AIDS Prevention. Nothing could be more formidable in scope on matters of community participation in health risk management than the issue of HIV/AIDS in Orange County, California. As the fifth most populous

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county in the United States, Orange County is also marked by increasing ethnic diversity and a growing and diversified population affected by HIV/AIDS. Institutionalized community participation and inclusive planning strategies characterized the efforts of Orange County in fusing locally developed knowledge into public policy on HIV/AIDS education and prevention (Valdisseri, Aultman, & Curran, 1995 as cited by Takahashi & Smutny, 1998). These attempts acquired added significance in the light of the complexity of AIDS as a disease and the stigma that the general public attaches to HIV/AIDS. The inclusionary planning process became unique in that it centered not only on affected stakeholders (i.e., persons living with HIV/AIDS), but also on individuals and groups who were unwilling to participate in the prevention efforts for social and emotional reasons. It also addressed issues of trust and diverse cultural perspectives that were far more difficult to resolve than problems related to conventional information dissemination programs and provision of health services. Given this multidimensional dynamic, community planning in Orange County had to ensure that participants could “articulate for and have expertise in understanding and addressing the specific HIV prevention needs of the populations they represent” (Orange County HIV Prevention Planning Committee, 1995 as cited by Takahashi & Smutny, 1998). The outcome of this process was the creation of the HIV Prevention Planning Committee composed of 17 committee members representing the following groups: (1) gay, bisexual, and transgender individuals, (2) persons of color, (3) substance abusers, (4) youth, and (5) women. In addition, there were representatives from the County’s Health Care Agency, Department of Education, various community-based organizations providing HIV/AIDS services, and the University of California—Irvine. Expectedly there were problems attendant to any experimentation with collectivity. Some members found it difficult at first to break from their intrinsic ties to the populations they represented, hence, slowing down the process of establishing a collective identity. Cynicism continued to be expressed about the power and influence of members representing the municipal agencies, and that there was no equal power in decision making. Overall, however, the fusion of experts with community representatives in the county committee enabled Orange County to formulate a plan particularly in regard to resource allocation. It broke down bureaucratized procedures and engendered information exchange and networking. Advocacy on the part of community-based organizations gave way to a consensual technical process of following a set of criteria to select target populations for the program (Takahashi & Smutny, 1998). Community Involvement in Health Risk Management: Balancing Science, Institutional Trust, and Public Choice

The three cases mentioned in the preceding section illustrate the value of public or community involvement in health risk management. The need to put a premium on public involvement in the risk management process acquires added urgency in the context of the many health-related decisions and choices that modern societies have to make. Indeed, many of the new health risks faced today reflect the consequences of new human interventions in natural processes such as those involving food production and processing, transplants using animal organs, and biotechnology. Robert May (2001) contended that as a result of medical advances that have lengthened life expectancy, the public has also now regarded a longer and healthier life as a basic right and the paths to better health as a public choice. Ironically, with the vast opportunities that medical science has to offer, society has yet to keep pace by doing a better job of defining what kind of world it wants. Whereas

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science continues to assert its voice in terms of “factual clarification of possibilities and constraints” (May, 2001, p. 891), the answers to some of the other substantial questions concerning values and contexts will have to be debated via forums that can accommodate complexities and varied viewpoints. Whereas it is a valid concern for health experts that popular beliefs, biases, and opinions may sway policymakers into enacting a questionable regulation, similar concerns can be raised about the biases that are brought by health practitioners into health risk assessment. Ong (1998) noted that screening mammograms can detect breast cancer in some women but also place a large group of women at risk of harm from radiation exposure. He adds that “women who have false positive results are subjected to unnecessary tests and interventions, and may have substantial anxiety and psychological morbidity” (p. 1229). He suggested that public participation, in this context, is pivotal in ascertaining the cost-effectiveness and utility of medical diagnosis and treatment. Involving communities in the early stages of health risk assessment, management, and communication also works toward maintaining a balance between diverse perspectives on health. This concept becomes more meaningful as health is viewed as “a state of well-being and the capability to function in the face of changing circumstances” rather than just the absence of disease (Public Health Reports, 1997, p. 183). Based on a study by the Insitute of Medicine’s Division of Health Promotion and Disease Prevention, community-based coalitions can become vital players in promoting collaboration in order to achieve more broadly defined health improvement goals for the community. Specifically, such coalitions can help “provide broad assessments, set priorities, and create a more relevant community profile of local demographic and socio-economic characteristics, health status, and health risks.” Moreover, they can also conduct their own health monitoring and formulate the health indicators that are appropriate to the locality (Public Health Reports, 1997, p. 183). The concept of community participation in health risk management recognizes the interdependence of individuals and communities in solving health problems in a more holistic approach. Providing opportunities for community members to work together in community-based groups or in partnerships empowers them to make appropriate decisions on such questions as the safety of drinking water, how to choose treatment regimens for prostate and breast cancer, and enabling action to prevent disease and cancer (Ratzan, 1999). The concept of community participation in health risk decision making and management is not free from the tension that accompanies democratic governance. The tug-of-war between the beliefs and principles of the technical experts and those of the public is to be expected. However, such tension, if seen from a participatory framework, is more productive in terms of the quality and sustainability of the decisions and actions that result from consultation and negotiation. This is mainly because community participation affirms the basic democratic and political ethic and vision as espoused by Thomas Jefferson. Jefferson’s vision places premium on local jurisdictions with active citizen involvement in all aspects of governance, such that “any citizen can attend, when called on, and act in person” (Mason, 1956, p. 372; Koontz, 1999, p. 442). Furthermore, citizen involvement increases government accountability. Evidently, there is no one-size-fits-all community involvement technique that can satisfy all affected stakeholders and perhaps it is best that there is no single modality of community participation. As a process that is essentially interactive, it does not adhere to a specific formula in order to arrive at the end result. As Plein, Green, and Williams (1998) observed, such a process will have “different starting points and different paths for different participating elements” (p. 516). Indeed, the “nuts-and-bolts of co-partnerships”

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(Pritikin, 1998, p. 51) pose difficult questions. As the Orange County community planning experience on HIV/AIDS indicates, community participation can be problematical and may continue to raise questions, if not cynicism (Takahashi & Smutny, 1998). On one hand, while community participation has engendered a collaborative atmosphere among affected individuals and community groups in Orange County, there are issues about participation as serving to legitimize existing institutional structures and practices (Takahashi & Smutny, 1998). Issues such as these call for examining further the various participation tools and processes and how they function in terms of providing a sphere for equitable discourse about health risks and the management of risks. Community involvement takes many forms and the range of techniques to enhance community participation in health services increases as innovations continue to grow. Even as there have been attempts to characterize forms of involvement or participation, there is still no rigorously or generally accepted classification scheme to efficiently categorize the numerous participative approaches and techniques that are currently practiced (Chess, 2000). Community involvement as a process of arriving at communal decisions on risk management is a social and organic process running through a continuum that can be characterized as passive to active, contractual to collegiate, token participation to empowerment (Arcury et al., 1999; Tong & Lu, 1999). As Tong and Lu (1999) further qualify, the process would depend on such factors as how the agency uses the form of participation, the organizational and administrative context, the issues and individuals involved, levels of knowledge, local perceptions and beliefs, as well as issues involving leadership, costs of interventions, degree of collaboration, and so on. What is important is not to lose sight of the end goal, which is to provide an arena for participants to gain insights, reflect on the issues, and provide better informed recommendations or decisions. This notion of a more flexible arena for community involvement or participation is what the proponents of Healthy Communities have qualified as a “safe civic space” for productive and meaningful deliberation rather than engaging stakeholders in issue-specific debates. This space for deliberation allows stakeholders to view community challenges holistically, focus on root causes, create norms of shared health values and culture, encourage beneficial approaches, and form policies that reflect shared values and norms (O’Connor & Gates, 2000). Thus, community involvement in health risk management will do well to utilize a combination of interactive techniques to suitably engage different types of stakeholders. At the core of these activities is the conscious attempt to break down barriers between the so-called experts/scientists and those members of the community who need to decide what policies are best suited to manage health risks locally. In the long term, these multiinteractions provide involved and affected parties a better appreciation of the complexities of a health problem and the entangled social dynamics accompanying problem resolution. Community involvement does not guarantee reduced tensions between community-based stakeholders and agency-based technical experts. Neither should community participation be construed as a means to overthrow or downgrade the contributions of science as a way of knowing about risk. Some of the strongest arguments for community participation come from Greenwood and Levin (1998) who noted that involvement, control, and capacity building are accomplished through a self-informing generation of systematic and organized knowledge. In doing so, they noted that the method aims to increase the ability of the involved community to more effectively control their own destinies and to continue improving their capacity to do so (Greenwood & Levin, 1998). The approach this builds on suggests that those who will be most affected by change should be intimately involved in determining the course

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and substance of change. Maestro-Scherer and Rich (2001) noted that another outcome that must not be trivialized is the impact on group members of “discovering” new ways of understanding. This self-discovery of information may be one of the more powerful motivating influences on behavior, but has been largely neglected by researchers, especially in the health and risk fields. Community participation should be seen as a means of veering away from the polarizing dichotomies of knowing about risk (i.e., “objective risks” and “subjective” risks), in order to move toward a more inclusive and integral consideration of risk viewpoints. Carefully planned community involvement activities may help all stakeholders reduce conflicting perspectives and facilitate the formation of a common resolution for a health problem. Employing community involvement mechanisms in risk assessment and risk management enables the affected stakeholders to take responsibility for the quality of their participation, the ideas they share, and the decisions they eventually make for their own health and for the community. Whereas practical considerations prevent all who will be impacted from participating, it seems reasonable to assume that a full range of perspectives of those affected must be represented (Rich & Maestro-Scherer, 2001a). In addition to issues of inclusion, there is a wide range of other unstudied challenges to participation strategies. Well-designed and -implemented participation strategies are expensive, time consuming, and complex. As a result, most participation activities become “one-time” events, and questions of sustainability are ignored. Other strategies result in questions of exploitation of participants or are used to avoid conflict. In other cases, participation is seen as threatening on behalf of one or more parties and is regarded as a means of power shifting (Rich & Maestro-Scherer, 2001a). All of these issues are significant to the future of participation and largely remain unexplored by researchers. Going beyond these affirmations of the potential benefits of community participation in health risk management and communication, it is important to remember that, at the end of the day, evidence is needed to show what works for and what mitigates against attaining the goal of inclusion and improved health behaviors. REFERENCES Arcury, T., Austin, C., Quandt, S., & Saavedra, R. (1999). Enhancing community participation in intervention research: Farm workers and agricultural chemicals in North Carolina. Health Education and Behavior, 26, 563–578. Aspinwall, L. (1999). Persuasion for the purpose of cancer risk reduction: Understanding responses to risk communication. Journal of the National Cancer Institute Monographs, 15, 88–93. Ball, L., Evans, G., & Bostrom, A. (1998). Risky business: Challenges in vaccine risk communication. Pediatrics, 101, 453–458. Basen-Engquist, K., & Parcel, G. (1992). Attitudes, norms and self-efficacy: A model of adolescents’ HIV-related sexual risk behavior. Health Education Quarterly, 19, 263–277. Bennett, P. (1999). Understanding responses to risk: Some basic findings. In P. Bennett and K. Calman (Eds.), Risk communication and public health (pp. 4–19). New York: Oxford University Press. Borzekowski, D., Flora, J., Feighery, E., & Schooler, C. (1999). The perceived influence of cigarette advertisements and smoking susceptibility among seventh graders. Journal of Health Communication, 4, 105–118. Bovasso, G. (1996). A network analysis of social contagion processes in an organizational intervention. Human Relations, 49, 1419–1435.

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Brown, W. (1991). An AIDS prevention campaign. American Behavioral Scientist, 34, 666– 678. Brunner, R. D., & Ascher, W. (1992). Science and social responsibility. Policy Sciences, 25, 295–331. Chess, C. (2000). Improving public participation in solving environmental health problems. Journal of Environmental Health, 63, 24–27. Douglas, M., & Wildavsky, A. (1982). Risk and culture. Berkeley: University of California Press. Earle, T., & Cvetkovich, G. (1997). Culture, cosmopolitanism, and risk management. Risk Analysis, 17, 55–65. Eden, S. (1996). Public participation in environmental policy: Considering scientific, counterscientific, and non-scientific contributions. Public Understanding of Science, 5, 183–204. Einsiedel, E., & Thorne, B. (1999). Public responses to uncertainty. In S. Friedman, S. Dunwoody, & C. Rogers (Eds.), Communicating uncertainty (pp. 43–57). Mahwah, NJ: Lawrence Erlbaum Associates. Fessenden-Raden, J., Fitchen, J. M., & Heath, J. S. (1987). Providing risk information in communities: Factors influencing what is heard and accepted. Science, Technology and Human Values, 12, 94–101. Fischhoff, B. (1995). Risk perception and communication unplugged: Twenty years of process. Risk Analysis, 15, 137–145. Friedman, S., Dunwoody, S., & Rogers, C. (Eds.). (1986). Scientists and journalists. New York: The Free Press. Galbraith, J., & Ricardo, I. (1996). Challenges and rewards of involving community in research: An overview of the “Focus in Kids” HIV risk reduction program. Health Education Quarterly, 23, 383–394. Greenberg, M., & Williams, B. (1999). Geographical dimensions and correlates of trust. Risk Analysis, 19, 159–169. Greenwood, D. J., & Levin, M. (1998). Introduction to action research: Social research for social change. Thousand Oaks, CA: Sage. Hiskes, R. (1998). Hazardous liaisons: Risk, power, and politics in the liberal state. Policy Studies Journal, 26, 257–273. Jardine, C., & Hrudey, S. (1997). Mixed messages in risk communication. Risk Analysis, 17, 489–497. Jasanoff, S. (1993). Bridging the two cultures of risk analysis. Risk Analysis, 13, 123–128. Johnson, B., & Slovic, P. (1995). Presenting uncertainty in health risk assessment: Initial studies of its effects on risk perception and trust. Risk Analysis, 15, 485–494. Juanillo, N. K. (1994). Recasting risk and scientific discourse: Dialectical message designs on food safety issues. (Doctoral dissertation, Cornell University, 1994). Archives Thesis, 1994 J917. Kasperson, R. E. (1986). Six propositions on public participation and their relevance for risk communication. Risk Analysis, 6, 275–281. Kasperson, R., Renn, O., Slovic, P., Brown, H., Emel, J., Goble, R., Kasperson, J., & Ratick, S. (1988). The social amplification of risk: A conceptual framework. Risk Analysis, 8, 177–187. Kelly, R., Zyzanski, S., & Alemagno, S. (1991). Prediction of motivation and behavior change following health promotion: Role of health beliefs, social support, and self-efficacy. Social Science Medicine, 32, 311–320. Koontz, T. (1999). Citizen participation: Conflicting interests in state and national agency policy making. The Social Science Journal, 36, 441–458.

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12 Working along the Margins: Developing Community-Based Strategies for Communicating about Health with Marginalized Groups Leigh Arden Ford Western Michigan University

Gust A. Yep San Francisco State University The complexities of health-related communication research and practice in community and with community are the foci of this chapter. As scholars and members of multiple communities, some marginalized and some not, we are committed to the ideology and principles of community-based health communication scholarship that we will describe in these pages. Because of these commitments, we begin with a narrative describing a community-based health communication strategy that fell short of these commitments. Our purpose in this narrative of failure is not to discourage community-based collaborative scholarship. Rather, we hope it illustrates how readily and unconsciously privilege may be enacted and marginalization experienced in such efforts. While we each have stories to tell, one of Leigh’s experiences with hantavirus prevention education in the U.S.-Mexico border region (USMBR) follows. In the summer 1993, several sudden deaths from severe lung infections among otherwise healthy adults were reported in the southwestern United States. Led by the Centers for Disease Control and Prevention (CDC), teams of research scientists soon identified the infection as hantavirus pulmonary syndrome (HPS), caused by one of the several hantaviruses in the world.1 With the identification of the virus (now named Sin nombre), the CDC undertook a focused effort to further scientific research on the transmission 1 This particular hantavirus is spread to humans by infected rodents, specifically deer mice and cotton rats in the southwestern United States. When fresh or dried rodent urine or feces sheds the virus it becomes airborne. The aerosolized virus then can be inhaled by the human host and a lung infection ensues (CDC, 1994). While HPS is a serious public health threat because it is difficult to diagnose, has no known cure, and is fatal in approximately half the cases, it is also preventable through the enactment of simple, relatively inexpensive measures.

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and treatment of the disease and also supported an extraordinary effort to communicate information about this infectious disease and its prevention to the public. The hantavirus research team working in the USMBR had two goals: first, to conduct seroprevalence screening, i.e., testing blood for prior hantaviral exposure, and second, to develop communication strategies for the dissemination of information about emerging infectious diseases to Spanish-speaking rural, border, and migrant communities. In these efforts, we worked collaboratively with public health personnel, community leaders, and local community health workers. We participated in community health fairs, visited local schools, attended meetings of local agencies and community groups working to solve social, economic, and health problems on the border, and listened to and learned from the community. Reaching migrant farmworkers proved a challenge but we were able to develop at least one outreach strategy we hoped would be effective. One early morning the team traveled with the New Mexico Department of Health mobile medical unit to the Ciudad Juarez-El Paso border. On the Texas side of one border crossing migrant day laborers waited in the predawn hours for contractors who transported them to the fields of southern New Mexico. At 3 A.M. we met a volunteer farm labor organizer, a local female who participated as our liaison to this community on this and other occasions. We set up a table outside the medical van and brought out our Spanish-language HPS information materials, a coffeepot, and, as an afterthought, a basket filled with condoms. This last-minute gesture not only proved to be culturally insensitive but also may have inadvertently undermined the community education goal of the trip. Few men approached the table that morning, despite the persuasive efforts of the labor organizer and one Spanish-speaking male on the team. As a few farmworkers drank the proffered cups of coffee, the Spanish-speaking team members attempted to enlist their participation in the blood draw while simultaneously giving instruction about HPS prevention and offering the free condoms. Most men declined participation, refusing the condoms as well. As dawn approached and most of the vans had departed, our team discussed our disappointment. In these reflective moments, two things became clear. First, the blood draw, the condoms, and the talk about viruses likely conflated hantavirus and HIV for the farmworkers and may have resulted in misinformation and further misunderstanding of both viruses. Second, the migrant workers there were all Hispanic males with minimal education while our team was mostly female, mostly Anglo, middle class, and highly educated. Despite our efforts to collaborate with the community, it became clear to us that we had confronted our own privilege as a boundary to this educational effort in only limited ways prior to the experiences of that morning. (See Crabtree & Ford, 1998, for a description of the project and the dilemmas encountered.) Border crossings (Giroux, 1992), literally and figuratively, define community-based health communication work. Community health promotion researchers and practitioners embrace culture as the central organizing theme in shaping identity, values, and histories and engage differences such as class, race, ethnicity, gender, and sexual orientation as boundaries to be crossed within social interaction (Airhihenbuwa, 1995). As a consequence, the tensions between power and powerlessness, privilege and marginalization, participation and resistance characterize this scholarship and challenge its enactment. Despite (and perhaps because of) these challenges, we celebrate the boundary-spanning nature of community-based health communication scholarship in this chapter. Our first goal is to present theory, research, and practice in this area to date. We begin with a discussion of the complexities of the social (cultural), economic, and political context for marginalized populations and then explicate notions of community, culture, and

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communication in community-based health promotion. We then review representative research on community-based strategies for communicating with marginalized populations about health, using an analytical structure focused on the forms of community participation and empowerment. Our second goal is to provide a rationale for centralizing marginalized communities in our research, theory, and practice in the new century. We conclude with a reflection on contradictions emergent and inherent in community-based scholarship and their implications for research and practice. THE SOCIO-CULTURAL ECONOMIC, AND POLITICAL CONTEXT OF MARGINALIZED POPULATIONS

Although there are different perspectives on marginalization (e.g., Amaro & Raj, 2000; Crewe, 1997; Ferguson, 1990; Frye, 2001; Marshall & McKeon, 1996; Mokros & Deetz, 1996; Ray, 1996; Tucker, 1990; Yep, 1998), it is clear that there are numerous disenfranchised individuals, social groups, and communities in U.S. American society. Marginalization, according to Tucker (1990), is that complex and disputatious process by means of which certain people and ideas are privileged over others at any given time . . . [and] the process by which, through shifts in position, any given group can be ignored, trivialized, rendered invisible and unheard, perceived as inconsequential, de-authorized, “other,” or threatening, while others are valorized. (p. 7)

In short, this process of marginalization produces individuals, social groups, and communities that are denied full privileges, rights, access, and power within the existing political system and social structure (Ray, 1996). Marginalization exists in an ongoing dialectical tension with an invisible center (Ferguson, 1990). The center or “mythical norm” is “defined as white, thin, male, young, heterosexual, Christian, and financially secure” (Lorde, 1990, p. 282). In other words, social and cultural (e.g., race, gender, sexuality, physical appearance, age, ability, etc.) and economic factors (e.g., financial security, socioeconomic status, etc.) are used as markers to disenfranchise individuals and groups. Although these factors marginalize people in different ways, to different degrees, with different material and psychological consequences, Ray (1996) reminds us that we live in a world in which everyone can be affected in some way, “It may happen to us or to someone we care about. With a roll of the die, with great abruptness, anyone can become ‘them’” (pp. xv–xvi). In this section, we examine the contexts associated with marginalization and disenfranchisement of individuals and social groups. For purposes of discussion, we examine social, cultural, economic, and political contexts under two separate headings. However, we recognize that such contexts operate interdependently in complex and intersecting ways. For example, a poor European American, middle-aged, female, drug-using commercial sex worker operates in a society that marginalizes and attempts to silence her in multiple ways—socially, materially, politically, discursively. Through these intersecting systems of marginalization and oppression, her experience represents a nonsummative and simultaneous combination of all social, cultural, economic, and political factors. The Social, Cultural, and Economic Context

The unequal distribution of wealth, health, and life opportunities is heavily influenced by the interaction of social, cultural and economic as well as political factors (Minkler,

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Wallace, & MacDonald, 1994/1995). Individuals and groups that do not conform to the mythical norm, or “the standards of normality” in society, are marginalized and devalued, and their health concerns are treated differently than those in the dominant culture. Marginalization can be based on gender (Amaro & Raj, 2000; Bauer, Rodriguez, Quiroga, & Flores-Ortiz, 2000; Cline & McKenzie, 1996; Gutierrez & Lewis, 1997; Zambrana, 1996), race and ethnicity (Airhihenbuwa, 1995; Gutierrez & Lewis, 1997; Huerta & Macario, 1999; Zambrana, 1996), social class (Marshall & Mc Keon, 1996; Zambrana, 1996), disability (Braithwaite, 1996; Johnson & Albrecht, 1996), and sexuality (Corey, 1996; Elwood, 1999; Wohlfeiler, 1997; Yep & Pietri, 1999), among others. These marginalization markers can operate alone (e.g., disenfranchisement based on social class) or, more frequently, in combination with other markers (e.g., disenfranchisement based on social class, gender, and ethnicity). In summary, what is treated or untreated, defined or undefined, as a health or social issue is delineated by the dynamics of gender, race, class, ability, and sexuality (Minkler, 1997; Zambrana, 1996). The social, cultural, and economic context affects the individual’s daily experiences and his or her relationship to the larger social system including health care. For example, research on abused Latina and Asian women identifies a number of interpersonal, sociocultural, and systemic factors influencing their health and well-being including feelings of shame, fear of retaliation by the abuser, feelings of family loyalty, language barriers, prohibitive health care costs, medical providers’ cultural insensitivity, and inaccessible health care services like long waiting periods, among others (Bauer & Rodriguez, 1995; Bauer et al., 2000; Rodriguez, Quiroga, & Bauer, 1996). Bauer and associates (2000) found that traditional gender roles in the family influenced the women’s perceptions of abuse and their willingness to seek professional help. Both Latina and Asian participants in their study indicated their need to maintain loyalty to their families and to keep their family units intact while the Asian women reported a tremendous sense of shame and fear of ostracism. Some of the Latinas experienced discrimination and cultural insensitivity from their medical providers. Similarly, research on women living in poverty indicates that they are in poorer health than more affluent individuals (Marshall & McKeon, 1996; Zambrana, 1996). Access and availability of health care and underutilization of existing health care services are critical factors contributing to the poor health status of women living in poverty. Marshall and McKeon (1996) identified several factors leading to underutilization of health services. First, poor women, living with limited financial resources, are forced to focus on more immediate needs like food and shelter rather than on health care. Second, accessibility and availability of health services, including location and availability of appointments, transportation, and child care services, and other obstacles erected by the health care establishment, become additional barriers to seeking health care. Marshall and McKeon also reported that women living in poverty are generally less knowledgeable about health and illness, disease symptoms and warning signs, and preventive health practices. In summary, the social, cultural, and economic context of marginalized individuals and social groups creates unfriendly conditions for maintaining good health. In many ways, the health care system continues to reproduce and reflect other systems of inequality in U.S. American society today (Minkler, 1997). The Political Context

Politics is “the complex constellation of social relations among individuals” and “not solely an examination of the policy process” (Elwood, 1999, p. 5). Undoubtedly, relationships

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among individuals, groups, communities, and institutions such as health care are political. Lack of political voice, representation, and legal protection is common among marginalized individuals and communities (Bauer et al., 2000; Diaz, 1998; Diaz-Cotto, 1991; hooks, 1990; Yep & Pietri, 1999). For example, Diaz-Cotto (1991) observed that definitions of criminality and selective enforcement of offenses by the criminal justice system place working-class white and minority women in the lowest strata of society. Yep and Pietri (1999) found that, in addition to lacking political voice and representation, transgenders are disregarded and pathologized by the health care establishment in terms of biomedical and psychological research and provision and delivery of health care services. Bauer and associates (2000) identified fear of deportation and lack of legal protection as critical barriers for reporting spousal abuse and seeking health services among Latina and Asian undocumented immigrant women. In short, the political context also provides an inhospitable environment for marginalized populations. Such an environment hinders maintenance of optimal health and healthseeking behaviors by these individuals and communities. Taken together, the social, cultural, economic, and political contexts shift the focus from individually oriented health behavior change models to the larger social domain where these behaviors are enacted and rendered meaningful. This move to focus on contexts (Airhihenbuwa, 1995; Airhihenbuwa, Makinwa, & Obregon, 2000; Airhihenbuwa & Obregon, 2000) and social ecology (Choi, Yep, & Kumekawa, 1998; McLeroy, Bibeau, Steckler, & Glanz, 1988) offers major advantages over individualistic models. Choi and associates (1998) identified three potential advantages: First, it de-emphasizes the importance of the individual on behavior change and the potential concomitant of blaming the victim for lack of effort or failure to change. Second, it considers both individual and environmental influences as possible explanations for unhealthy behaviors. Third, it allows the use of environmental [and contextual] approaches in prevention programs. (p. 27)

Hence, this move provides a framework to address multilevel health risk factors affecting marginalized communities. Further, an understanding of the marginalization that arises from these larger social systems provides insight into the complexities of communitybased health communication efforts. COMMUNITY, COMMUNICATION, AND CULTURE: THE FOUNDATIONS OF COMMUNITY-BASED HEALTH COMMUNICATION INTERVENTIONS

Scholars focused on community-based strategies for improving individual and community health come from diverse disciplines but share common roots: (1) the World Health Organization’s (WHO) Healthy Cities/Healthy Communities project, advocating community-based health intervention approaches (Hancock, 1993); (2) growing dissatisfaction with the research and outcome failures of individual lifestyle based models of health promotion (Becker, 1986); and (3) the rise of alternative discourses for pedagogy, research, and theorizing within the social sciences (see Mumby, 1997, for a discussion of these discourses). In the latter case, the critical pedagogy advocated by Brazilian Paolo Freire (1998/1970) in particular, informs the community-based health intervention movement. Observing that traditional methods of literacy education were largely ineffective with poor disenfranchised Brazilians, Freire advocated an alternative approach, empowerment education defined as “a participatory education process in which people are not objects

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or recipients of educational and political projects but actors in history, able to name their problems and their solutions to transform themselves in the process of changing oppressive circumstances” (Wallerstein & Bernstein, 1994, p. 142). In summary, the community-based health promotion agenda has come to represent an alternative domain of knowledge, discourse, and methods to more traditional approaches to health promotion interventions (Robertson & Minkler, 1994; Wallerstein & Bernstein, 1994). Further, in the view of these scholars, health promotion scholarship marginalizes community, culture, and communication when the significance of these notions to health intervention efforts with disenfranchised communities is viewed as just one of a host of factors affecting health. In the following sections, we examine community, communication, and culture in community-based health interventions with marginalized groups. First, we briefly define community (the chapter by Dearing in this volume provides further discussion on issues related to defining community) and then we briefly review the two dominant frameworks for understanding health communication (Lupton, 1994; Mokros & Deetz, 1996). Next we present a view of culture that resists its essentializing form in traditional health promotion scholarship. Finally, we highlight the dialectical tension between the two communication frameworks and present the communicative activity of dialogue as central to community-based health intervention scholarship. Community in Health Intervention Programs

In general, when community is considered in health promotion activities and research, the geographic sense of locality predominates. While proponents of using community-based health promotion strategies with marginalized populations consider the effects of physical locality, they begin with a view of community as a socially constructed phenomenon. That is, community is constituted (created) and reconstituted (sustained) in the every-day communication practices of a group of people that result in a sense of shared social space, i.e., the informal social environment where community is encountered and constituted, of connectedness, and of shared language and meanings shaped by experience in a shared social, cultural, and political context (Adelman & Frey, 1997; McMillan & Chavis, 1986; Weider & Hartsell, 1996).2 Finally, significant to the goal of social change advocated by Freire (1998/1970), a community identifies shared needs and capacities. That is, the group acknowledges common concerns and through its identification of collective strengths, abilities, and resources commits to addressing those concerns in interdependent ways (McKnight, 1987; McMillan & Chavis, 1986). This sense of community profoundly alters the definition of health itself to include the social, political, and economic determinants of health. Further, the emphasis on community results in health intervention activities that are inherently political and that serve the superordinate goal of social justice (Lupton, 1994; Robertson & Minkler, 1994). Communication in Health Intervention Program

The two frameworks for understanding communication in health intervention research and practice, the instrumentality and constituitive views (Mokros & Deetz, 1996), represent

2 For example, Gerard Power and Teresa Byrd (1998) edited a recent volume focusing on health issues in the USMBR where a sense of geographic place is interwoven with culturally based community identifiers and shared sense making in health promotion activities.

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different discourses and contrasting assumptions about social actors, their social worlds, and their communicative practices. As such each discourse also reflects an ideological position (Geist & Dreyer, 1993; Mumby, 1997; Lupton, 1994). In traditional health promotion scholarship, the discourse of representation utilizing the metaphor of communication as an instrument predominates (Mumby, 1997). In this discourse, the objective nature of reality and human existence and the discoverability of truth frame research and practice. Within the discourse of representation, language becomes a “value neutral” mode of expression believed to represent and to refer to some objective reality and communication then is characterized as the exchange of information by social actors who function as processors of that information (Mokoros & Deetz, 1996). Further, communication itself is an object open to investigation and analysis by researchers and practitioners whose goal is to discover and explicate strategies to achieve maximum communicative effectiveness (Mokros & Deetz, 1996; Mumby, 1997). Hence, health promotion scholarship within this discourse emphasizes issues such as message design, communication channels, and measurable effects in a health information campaign designed and planned by experts (Lupton, 1994). The ideological position of representational discourse presumes a value neutrality while it functions primarily to maintain or enhance the existing power relationships (Mumby, 1997). Indeed, Lupton (1994) argued that the interests of health promotion researchers align with the powerful, established health care interests such that “communication is largely regarded as a ‘top-down’ and somewhat paternalistic exercise” (p. 56). Further, reliance on the biomedical model and individualistic models of health knowledge and behavior in these health interventions reifies the hegemony of the prevailing ideologies thereby deflecting health responsibility from the dominant social structures and marginalizing the role of culture in everyday communication practices (Geist & Dreyer, 1993; Lupton, 1994). The alternative discourses of communication articulated by Mumby (1997) begin with a constitutive view of communication. In this social constructionist’s perspective, our experience of reality is viewed as the product of communicative actions rather than reality as an objective phenomenon; persons and things are constituted through interaction, and interaction consists of ongoing contests of meaning. As applied to health communication, then, Mokros and Deetz (1996) stated, “To approach communication as constitutive is to throw into question persons, diseases, and health as natural categories and to instead view these categories as discursive ways of understanding experience, understandings that are socially constructed” (p. 32). Thus, individuals, communities, and health/disease are linguistic constructions based on shared assumptions about what’s true, what’s real, and what’s valued (Mumby, 1997). The discussion thus far describes a contextualized but apolitical constitutive view of communication, a critique leveled against research within the discourse of understanding (Mumby, 1997). Within a discourse of suspicion the political and ideological effects on communication practices are foregrounded (see Mumby, 1997, and Mokros & Deetz, 1996, for extended discussions). Briefly stated, in this discourse communication constitutes persons and situations but those constitutions arise from and within a political/ideological discourse that privileges certain forms and meanings over others (Mumby, 1997). This marginalization of some realities and the privileging of others reflects the economic, cultural, and ideological dimensions of power. Thus, the goal of health promotion scholarship becomes to expose and challenge those systems of domination and to centralize the voices of the disenfranchised (Lupton, 1994; Mokros & Deetz, 1996).

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Culture in Health Intervention Programs

Culture consists of a complex social, economic, and political structure characterized by a system of values that influences attitudes, perceptions, and communication behaviors and practices in a given society, within a historical context (Airhihenbuwa, 1995). Culture is constantly produced and reproduced through communication. Although some individuals and social groups are more readily marked as “having culture” (e.g., Native Americans) than others (e.g., European Americans), every individual and social group operates within particular cultural systems. Such systems are not static as Giroux (1992) reminded us, “[culture] is not an object of unquestioning reverence but a mobile field of ideological and material relations that are unfinished, multilayered, and always open to interrogation” (p. 99). In short, everyone functions within a fluid cultural system. Communicating about health inevitably occurs within a particular cultural context. Cultural sensitivity, according to Airhihenbuwa (1995), “refers to the need to develop programs in ways that are consistent with a people’s and community’s cultural framework” (pp. 6–7). If we develop, implement, and evaluate health intervention programs that are culturally sensitive, there are no “cultural barriers.” These barriers often result when dominant and hegemonic cultural standards are applied to less privileged groups (e.g., application and imposition of middle-class, male, European American beliefs and values about health and illness on poor, female, non-European American individuals) (Airhihenbuwa & Obregon, 2000). In his study on Latino gay men and HIV infection, Diaz (1998) described the sociocultural context of sexual activity among Latino gay men in the United States in an attempt to identify—instead of devalue and pathologize—the Latino cultural scripts associated with sexual expression. Because such scripts consist of factors like machismo, homophobia, family loyalty, sexual silence, poverty, and racism that are decisively different from European American gay male scripts, Diaz suggested that health messages must be tailored to the social and cultural realities of Latino gay men rather than simply adapting and imposing middle-class, European American cultural standards (see also Huerta & Macario, 1999; Yep, in press). More simply stated, to maximize the effectiveness of health messages we must construct them with cultural sensitivity. But where do members of privileged communities such as those represented by our academic and research credentials acquire that sensitivity? Dialogic encounter appears to offer one means to that increased cultural understanding. Centralizing Dialogue in Health Intervention Programs. Health promotion researchers and practitioners interested in using community-based communication strategies with marginalized populations begin their efforts from a position that supports an appreciation for a dialectical tension between the instrumentality and constitutive views of communication. While valuing the knowledge developed from traditional health promotion scholarship in communities, these researchers and practitioners reject the “power over” ideological position and embrace one of “power with” (Zoeller, 2000). Working within the worldview of community members, using their cultural knowledge and beliefs, and building on their strengths and understandings of their own needs, the role of the health communicator becomes that of catalyst, coach, facilitator, and teacher/learner. In practice, dialogue is the communicative activity through which this dialectical tension is experienced. While multiple conceptions of dialogue exist, some common themes, values, and practices emerge (see Anderson, Cissna, & Arnett, 1994). First, dialogue exists in relationship or “the between”—the region of human existence that connects one person to another (Buber, 1965). Relationship features a concern for openness and in its

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enactment connectedness, trust, respect, and hope emerge. With openness, the participants in dialogue face risk, but the risk is presumed worthy as “dialogic relations involve risking one’s position in order to arrive at new understandings, and a commitment to keep the conversation going” (Zoeller, 2000, p. 193). Further, dialogue is defined by difference. “Otherness” is key as we are called to listen to the voices of those whose language, systems of meaning, and sense of community are different from our own (Zoeller, 2000). Finally, the possibility for change emerges in dialogue. Participants may find that dialogue challenges the unexamined certainties held as truth by the individual or the group. This possibility for change is the central purpose of dialogue in community-based health interventions. Relying on Freire’s notion of dialogue in empowerment education, the dialogic practices advocated reflect the themes heretofore described, but in addition a political consciousness infuses dialogue as it develops over time; the intent of dialogue is distinctly liberatory. As a democratization of both method and content, the goal of dialogue is to create conscientizacao, or consciousness raising. The dialogic content begins with the existential reality of people’s lives focusing on the here and now of people’s daily existence and local realities. As the dialogue unfolds, community members draw on their own experiences and practical knowledge to try to make sense of their situations and are free to challenge alternative interpretations. Through the sharing of interpretations a collective knowledge develops and a critical consciousness emerges, an awareness of societal power contradictions and a consciousness of the personal experience of oppression and one’s place as a member of an oppressed community (Freire, 1998/1970). Motivated by consciousness of oppression, individuals and groups can mobilize their skills and resources to actively change their situations. Through the dialectical process of collective action (or praxis) and reflection individuals, groups, and communities empower themselves to act effectively for individual and social change. In summary, dialogue is a collaborative activity existing in dialectical tension with collective action. When dialogue occurs, the result is the hopeful possibility that individuals and communities empower themselves, enhancing community, building social capital, and leading participants to act in ways that create justice and human understanding. The ideal of dialogue, however, is challenged by multiple barriers to its enactment, barriers as mundane as time and as complex as our multilayered identities in interaction. In most research on community-based health interventions, the pragmatic sense of dialogue prevails. That is, researchers, practitioners, and community members engage each other in many ways, some truly dialogic and others more or less participatory. REPRESENTATIVE RESEARCH ON COMMUNITY-BASED STRATEGIES FOR COMMUNICATING WITH MARGINALIZED POPULATIONS ABOUT HEALTH

Empowerment is the central organizing theme of all community-based health promotion strategies with marginalized populations; however, Freire’s (1998/1970) explication of empowerment action in communities reveals a complex set of intersections and ongoing dialectical tensions. Specifically, the forms of participation and the levels of empowerment and transformation are interrelated, are not mutually exclusive, and reciprocally influence one another. Thus, in its enactment in community-based health intervention research and praxis, empowerment is both a process and an outcome and occurs at both the individual and the community level (Bandura, 1997; Perkins & Zimmerman, 1995). Following Freirean ideals, community-based health promotion activities center on the notions of participation and empowerment. The former democratizes health intervention

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efforts as individuals and communities identify their own health concerns, determine the best strategies for addressing those needs within their communities, and then enact those strategies. The latter suggests a transformation. Individuals and communities once disenfranchised gain power, not simply in reference to the specific health issue addressed but also in the development of added community capacity and increased social justice. As succinctly stated by Wallerstein and Bernstein (1994), empowerment is “an interactive process of change, where institutions and communities get transformed as people who participate in changing them become transformed” (p. 142). In summary, community-based health interventions challenge hierarchical, patriarchal, coercive conceptualizations of power with a conceptualization of power that features participation, caring, and responsibility to others (Fawcett, Paine-Andrews, Francisco, Shultz, & Ricter, 1995). Further, community health interventions have an emancipatory goal. Through these community-developed and community-enacted interventions, the marginalized community challenges the larger structural systems of domination, i.e., the social, political, cultural, and economic forces that function to preserve the power of the oppressors and continue the subjugation of the oppressed. In the following section, we examine representative emancipatory projects using community-based strategies for communicating with marginalized populations about health.3 The level of community participation in problem identification, solution development, and strategy enactment is the key organizing scheme for this examination. We recognize that because of the long term, “bottom-up” nature of these emancipatory projects, multiple types of community participation and multiple specific empowering outcomes may constitute a single project. Grassroots Organizing: Participation of Citizen Volunteers and Community Activists

Many advocates of community-based health promotion efforts view grass roots organizing as the beginning of social change. In general, such efforts feature the committed collective action of a small group of people, usually citizen volunteers or community activists who come together at their own initiative to improve conditions in their communities (Bettencourt, 1996). These projects often begin with the broad goal of improving community health, but the definition of health, the identification of specific health needs, and the strategies for addressing those needs arise from the citizen group. The Casa en Casa project of La Clinica de la Raza (LCDLR) in East Oakland, California, a Latino community of primarily Mexican immigrants, provides an exemplar. Founded in 1971, at the height of the Chicano movement by university students who were influenced by Freirean theory, the LCDLR began as small medical clinic offering free, culturally and linguistically appropriate care to low-income residents. Over the years, community involvement in the clinic and staff involvement in the community led to increasing commitment to community health education (CHE) activities until a separate unit of the clinic, Casa CHE, was established for this purpose. The educational staff was 3 Community-based health promotion scholarship owes much to participatory action researchers who have been using these ideas in developing countries for some time. This review, however, focuses on marginalized populations in the United States and in Canada, which as a matter of national policy has undertaken this approach. Further, the studies presented in this review come from a variety of disciplines, emphasizing the interdisciplinarity that has been encouraged by mutual scholarly interests and by the advocacy position taken by WHO in its Healthy Cities/Healthy Communities initiative.

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committed to empowerment education and began community organizing through the Casa en Casa project, where neighbors met weekly in participants’ homes to learn about health, to discuss personal concerns, and to develop community actions. Some community empowerment resulted as a few Casa en Casa groups engaged in political activity, such as resistance to cutbacks in human services, but the individual level of empowerment was more commonly experienced by members who received support and information as a result of their participation in the group (Merideth, 1994). Although it is true that “grassroots activity can be started by anyone with an issue to address and an ability to communicate a message” (Bracht, Kingsbury, & Rissel, 1999, p. 97), it is also true that a community’s marginalized status may contribute to an inability to initiate action as members are caught by their own domination and the struggle for survival consumes daily attention and time. Thus, in many community-based health intervention “grassroots” projects, health professionals actually initiate problem identification efforts and community involvement by identifying community leaders or by calling for citizen volunteers (Kar & Alcalay, 2001). The starting point for this sort of grassroots health development project then is the establishment of the relationship necessary to dialogue. Specifically, health promotion scholars must exhibit the attitude of listener and learner to earn the trust of and openness with community members (Dervin, 1989). As a variation on the formative research more familiar in traditional health promotion scholarship, researchers and practitioners encourage the voices of community participants in an effort to understand their worldview. Thus, many projects begin with participant observation, in-depth interviewing with key informants, door-to-door surveys, or focus groups (Byrd, 1998; Myrick, 1998; Travers, 1997). For example, in the HPS prevention project described early in this chapter, we noted the many forms of participation in which we engaged to develop a committed presence in the community and collaborative relationships with community members (Crabtree & Ford, 1998). We also conducted individual and focus group interviews with promotoras (community health workers) to learn about the borderland community and its health concerns and to uncover mutual benefits of further collaboration (Ford, Barnes, Crabtree, & Fairbanks, 1998). These formative activities represent a transitional phase in the relationship from researcher-subject to participant-collaborator. Hence, while the project may have been initiated by the health communication professional, the meaning of the issue and strategies for addressing that issue are community driven. Traver’s (1997) emancipatory project with low-income women in an urban area in Canada illustrates these transitions. The central concern of this empowerment education project was reducing nutritional inequities. Travers began the project as a participant-observer at a community drop-in parent center. After a few weeks, she began to hold group interviews/discussions with women who attended an informal weekly women’s coffee group at the center. These discussions focused on the women’s experienced difficulties in feeding their families. Over time these women acquired increased awareness of the sources of their oppression and began to develop plans of action to address their oppression. Early in their discussions one woman observed that groceries cost more in urban neighborhoods than in the suburbs. After some discussion of other concerns, the group focused their energies on this issue. Members conducted a comparison shop and verified the significant price differential. After discussing several options over several weeks, the group, supported by Travers’ advocacy, wrote letters to both community supermarkets, noting their findings and recommendations for action, and both stores reduced price inequities. Further, a subgroup of women, with the aid of the researcher, secured grant funding for the establishment of a grassroots cooperative grocery now run by women from the community. Through their participation

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in empowering activities, these women empowered not only themselves but also their communities. In summary, grassroots organizing typically yields a small group of individuals who through their participation are empowered. At times they are able to effect social change and mobilize the community; more often these empowered individuals engage members of their social networks in informal interaction. We now examine the significance of those social networks to emancipatory projects. Social Networks: Community Health Workers as Boundary Spanners

One of the most frequently utilized forms of empowerment and participation in communitybased health communication interventions is collaboration with community health workers (CHWs) or lay health advisors (CDC, 1994). CHWs are trusted and respected community members who provide informal, community-based health-related services and communication interventions. Many CHWs are women who work as volunteers for the betterment of their communities, although increasingly their efforts are being supported by private and/or public health agencies and institutions (Walker, 1994). Some community empowerment projects focus on creating lay health advisors (Bird, Otero-Sabogal, Ha, & McPhee, 1996; Booker, Robinson, Kay, Najera, & Stewart, 1997; Byrd, 1998; Lugo, 1996; McFarlane & Fehir, 1994; Merideth, 1994) whereas other projects utilize existing CHW networks (Ford et al., 1998; Myrick, 1998). As indigenous residents of marginalized communities, CHWs are uniquely knowledgeable about community needs and as respected members of the community and the culture, they bring to their work the language, the cultural understanding, and a worldview shared with community members (CDC, 1994). In areas where CHWs are serving, they are able to communicate to professionals the needs of community members and to provide quality health promotion and disease prevention information to the community in the voice of the community. The degree of participation by CHWs in problem identification and strategy development varies. For example, in the second phase of the HPS prevention project the research team brought the health issue to the attention of the CHWs who, unknown to the team, had also identified this as a community concern following the HPS-caused death of a local agricultural worker (Barnes, Ford, & Crabtree, 2000). In contrast, Byrd (1998) described a child immunization project totally initiated by a group of health promotoras involved in Project Verdad in the USMBR. Furthermore, these CHWs also developed the outreach strategies for this project. In most cases CHWs participate in some formal training about health issues, but often the CHWs look for and create opportunities for communicating that information in locally acceptable ways. To illustrate, in the HPS project we trained CHWs, focusing on hantavirus transmission and HPS prevention. We then provided a variety of materials for them to use in the community, including videos (and portable TV/VCRs) and pamphlets in English and in Spanish, prevention demonstration materials, and magnetized cards using graphics depicting prevention strategies. In evaluation focus groups with the CHWs, we discovered that they engaged in a wide range of educational approaches and use of the materials as they disseminated this prevention information across southern New Mexico (Barnes, Ford, & Crabtree, 2000). Ford et al. (1998) articulated the constellation of public health and communication roles that CHWs can enact in their communities. In public health practice, a CHW may act as a lay health educator, lay health care referral source, health practice role model, and/or social support provider. The Camp Health Aide Program (CHAP) serving migrant

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farmworkers in the Midwest (Booker et al., 1997) and the previously noted Project Verdad (Byrd, 1998) are excellent examples of these enactments. From a communication perspective, CHWs are described as participants in formal and informal networks of communication, collaborating simultaneously as group members and intergroup linkers. In other words, they have significant amounts of communication with other members within a group and also serve to bind two or more groups together, moving messages from group to group, and hence enacting the network roles of opinion leader, gatekeeper, bridge, and liaison (Ford et al., 1998). The Resource Sisters/Companeras (Lugo, 1996) and De Madres a Madres (McFarlane & Fehir, 1994) programs demonstrate clearly the linking and boundary spanning actions of CHWs (Ford et al., 1998). In short, CHWs become catalysts for change. Through their public health and communication network role enactments, they promote community organizing efforts and enable individual empowerment. Significantly, community health workers empower themselves as they become a means to empowerment for individuals, families, neighborhoods, and communities (Ford et al., 1998; McFarlane & Fehir, 1994). Macro Networks: Community Coalitions

Coalition formation has become an important form of community member participation in community-based health promotion activities. Conceptualized as a communication network of communication networks, a community coalition brings together in a single group or organization individuals who represent diverse organizations or constituencies in an alliance to achieve a common goal (see Butterfoss, Goodman, & Wandersman, 1993, for a review). By developing communication linkages among existing organizations and groups, a coalition results in community participation that exhibits a depth and breadth of membership with a far-reaching effect in the community. Further, this increased participation, albeit indirect and representative, potentially may enhance ownership of coalition-generated approaches to health needs and hence can facilitate the mobilization of community members and increase the available resources in the enactment of coalition-developed strategies (Bracht, Kingsbury, & Rissel, 1999). In most empowerment education models of community-based health interventions, coalition formation occurs later in the experience of empowerment. For example, the De Madres a Madres project was designed originally to link volunteer mothers with pregnant community members. In the project’s third year, the volunteer mothers defined coalition formation as a goal for more effective community action for mothers and infants, but it was not until the fourth year of the program that substantial coalition formation took place, linking the project with the Women’s Center, local schools, and a health clinic (McFarlane & Fehir, 1994). By the fifth year of the project, the volunteer mothers, some of whom were now paid staff members, completely directed the activities of the program, focusing not simply on maternal health issues but health issues of the family unit. In addition to the more typical later emergence of coalitions, some community-based health intervention programs begin with the notion of coalition formation, as evidenced by projects uniting African American churches together with a variety of health care and health education organizations (Jackson & Reddick, 1999; Kong, 1997). The links between community coalition formation and community empowerment can be seen in the activities of the CHWs in the USMBR (Ford et al., 1998). Following an outbreak of cholera in an underdeveloped community (a colonia), CHWs created linkages with state and local environmental safety and public health officials in order to teach principles of sanitation, proper sewage disposal, and maintenance of appropriate potable

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water levels to community members. As a result of this outreach, the community developed an interest in further training and in writing a proposal in collaboration with these various agencies that would fund sewer infrastructure improvement, road paving, and street light installation. The success of the implementation stimulated a long-term potential among community members to further advocate for community change. In summary, opportunities for successful community mobilization toward political action increase with the diversity of represented organizations in community coalitions. Simultaneously, participants in these coalitions may experience a sense of individual and community empowerment. However, such coalitions can be fragile and difficult to coordinate and hold together for any kind of social action. CENTRALIZING MARGINALIZED COMMUNITIES IN HEALTH COMMUNICATION RESEARCH IN THE 21ST CENTURY: IMPLICATIONS FOR THEORY, RESEARCH, AND PRAXIS

It has now been a little more than 20 years since the launching of the Healthy Cities/Healthy Communities project. While some progress in health improvement and community empowerment has been achieved, much remains to be accomplished in the new century. Bernstein and colleagues (Bernstein et al., 1994) described the scope of the challenge in their rationale for the transformation of a hospital emergency department to a communitybased approach: Daily, we are faced with the casualties of oppression and violence, battering, rape, elder abuse, suicide, environmental disasters, alcohol and drug-related health problems, homelessness, deterioration of medical conditions due to poverty, inadequate nutrition, poor dentition, and general lack of access to health care and prevention. Racism, sexism, ageism, ableism, classism, and ethnocentrism are not just politically correct words; they are realities—the faces of people, their lives, personal and community biographies. (p. 292)

Further, this day-to-day experience of oppression takes place within the ubiquitous context of globalization that dominates markets, states, and our understanding of civil society. Hendriks (2001) argued that the seemingly natural and unalterable progress of globalization limits discourse on the reality of its consequences: environmental degradation, escalating worldwide poverty, the dehumanizing effect of public policies, the monopoly of wealth and power in the hands of the few. Such societal actions serve to increase fragmentation at the local level, heightening “difference” and normalizing oppressive relations. Freeing human capacity to live fully and authentically and experience its political expression in democratic action as supported in the community-based health promotion approach has important implications for communication scholars. Zoeller (2000) describes the Healthy Cities movement as “a concrete example of a significant attempt at invigorating public dialogue and developing democratic alternatives to bureaucratic organizing” (p. 192). As critical communication scholars, we work to understand, reveal, and then challenge the institutional and ideological contexts that impede dialogue. In community, we work to foster dialogue to identify health concerns as political and social problems, soluble by individual and community effort. Through community-based health communication scholarship, we support the development of participatory models of communication where “participation is a normative standard against which all acts of communication can be judged” (Deetz, 1999, p.147; see Deetz for full discussion of participatory democracy as a normative foundation for communication studies).

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The relevance of community-based health communication scholarship with marginalized communities in the 21st century to the health and well-being of individuals and society at large then is clear. Through engagement in and with marginalized communities boundaries are crossed, difference is celebrated, and cultural empowerment becomes the source and also the result of citizen participation (Airhihenbuwa, 1995).4 Through the efforts of community members local, democratic actions potentially can build healthy public policy, create supportive environments, strengthen community action, develop individual skills, and reorient health services (Ottawa Charter for Health Promotion, 1986). REFLECTIONS ON THE COMPLEXITIES OF COMMUNITY-BASED SCHOLARSHIP FOR HEALTH COMMUNICATION RESEARCH AND PRAXIS

In this chapter we have presented an overview of research and practice in communitybased health intervention scholarship based on liberatory dialogue. We described the complexities of the socio-cultural, economic, and political context for marginalized populations, and advanced an argument for the centralization of marginalized communities and participatory communication in health promotion in our future research, theory, and practice. Whereas we have argued for increased attention to this scholarly approach to health communication research and practice, we acknowledge that contradiction, paradox, and dialectical tension characterize this pursuit. Further, these tensions are fundamentally unresolvable. Community-based health intervention scholarship begins with the primary tension between the microlevel (individual) and macrolevel (sociopolitical) as the focus for transformation. This dialectic is influenced by and interrelated with multiple other dialectics. For example, participants have both a collective and an individual identity and can experience marginalization as individuals and as members of a particular community or culture. The tension between process and outcome in empowerment also has been described here and this tension suggests the contradiction of the need for order and organization in the effort to invoke emancipation and choice. Other dialectics have been identified in the enactment of emancipatory projects (see Zoeller, 2000). Of these dialectics perhaps the most troubling is the dialectic between empowerment and disempowerment. This dialectic emerges via the co-optation of terminology where a distinctly social justice–oriented approach is used to achieve conservative political ends to deny and further marginalize individuals and groups through the elimination of important social and economic system supports. For the community-based health communication scholar, the position of researcher also is experienced dialectically. One is both teacher and learner, participant and facilitator, and ultimately researcher and practitioner. These dialectics then have implications that apply to both research and practice. First, the researcher-practitioner must develop his or her own critical consciousness. As Airhihenbuwa and Ludwig (1997) pointed out “many subscribe to Freire’s notion of critical consciousness as long as it is the consciousness of the ‘targeted 4 Airhihenbuwa (1995) proposes a cultural empowerment model, known as PEN-3, a conceptual framework for health intervention programs centered around a dialogic process that allows individuals in communities to address issues of cultural sensitivity and cultural appropriateness in program development, implementation, and evaluation. The model demands that health communication interventions be constructed to resonate and reflect the cultural realities of the community rather than imposing or adapting the dominant cultural perspective on this group. (See Airhihenbuwa (1995) for the complete explication of the model.)

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community’ that is being examined rather than that of the interventionists” (p. 318). An empathy for the marginalized without commitment to engage in meaningful empowerment education reifies their marginalization. As researchers-practitioners, we must continue to live and act reflexively, to ask critical questions of ourselves and of others so that dignity and freedom for all become a reality. Second, as researchers and practitioners, we must create a space for alternative voices to be heard. In the academic community, we must work to legitimate alternative research strategies such as ethnographic methodologies in pursuit of health understandings. Alternative voices in the community reflect multidimensional identities and the forms of expression and understanding of those identities are culture specific, e.g., the significance of oral storytelling in African American culture suggests alternative strategies for both gathering and disseminating information within this marginalized group. As a corollary to the notion of alternative voices, the recruitment and retention of academicians from marginalized communities is an absolute priority and an ongoing need and concern for community-based scholarship. Additionally, we must encourage the legitimacy of alternative outcomes as measures of success for health communication interventions. For example, these emancipatory projects often do not conform to conventional time lines and frequently are met by surprises and setbacks. Further, hypothesis generation and testing as linked to communication effectiveness cannot be a goal. Success may be measured instead by the accomplishments, small and large, of individuals and communities and the type and quality of participation in the community dialogue. Third, in pursuit of these goals the researcher-practitioner must acquire a nontraditional set of skills. These skills include strategies for grassroots organizing and community building and techniques in community and group facilitation, in addition to acquiring expertise in ethnographic research methods. The researcher-practitioner must also be conscious of the need to function as an advocate in alliance with the marginalized community (Lupton, 1994), occasionally becoming the voice that speaks truth to power. In closing, we are painfully aware of how little the voices of the community have been heard in this chapter, despite its emphasis on empowering and empowerment. Once again, hegemonic forces win. Thus, we end with a reminder from one participant in an emancipatory project, as quoted in Poole and Van Hook (1997). Don’t start with the notion that you have to “empower” us. Recognize that we are in power. This is our community and when your program is gone, we’ll still be here. (p. 3)

In truth, not only will the researcher-practitioner be gone, he or she should be gone. The meaning of real emancipation is that individuals gain control over their lives, persons in communities experience democratic participation, and communities develop a critical understanding of the social and political environment and an ability to act on those understandings (Perkins & Zimmerman, 1995). In the end, it is their community; we are merely sojourners, crossing borders. REFERENCES Adelman, M. B., & Frey, L. R. (1997). The fragile community. Mahwah, NJ: Lawrence Erlbaum Associates. Airhihenbuwa, C. O. (1995). Health and culture: Beyond the western paradigm. Thousand Oaks, CA: Sage.

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13 Social Support, Social Networks, and Health Terrance L. Albrecht College of Medicine H. Lee Moffitt Cancer Center and Research Institute University of South Florida

Daena J. Goldsmith University of Illinois

Social support provides general social therapy for all types of incongruities one may encounter, soothing and relieving the symptoms of the person encountering the incongruity. The absence of social support seems to be an incongruity of considerable significance for most people. . . . Social support provides each person with a communication network that is a safe base. Here he [sic] can be accepted whether he succeeds or fails in other networks. Here he can retreat to take stock of himself and prepare to meet ‘life.’ Here he is accepted as a ‘whole person,’ and all his various qualities, roles, desires, and the like are of interest. He is not simply a role player whose private life is of no concern to others. —Moss (1973, pp. 236–237)

Nearly three decades ago, in Illness, Immunity, and Social Interaction, Moss (1973) described the function of social support as “social therapy”; that is, a process occurring in communication networks, operating for the purpose of helping people to cope with “incongruities.” Though the specific terminology has changed over the years, researchers across the social sciences, epidemiology, public health, and medicine have long recognized the importance of supportive communication as a necessary condition for the quality of life and for healthful living (e.g., Berkman & Syme, 1979; Cassel, 1976; Cobb, 1976; Moss, 1973). Social support is a communication behavior, as fundamental to interaction as the communication behaviors of informing, persuading, or teaching. Social support is a process embedded in structures of ordinary relationships in social life (Goldsmith, McDermott, & Alexander, 2000). It also is the foundation for extraordinary deeds in situations of extreme distress (i.e., the rescue of the Jews during the Holocaust and other genocides; Albrecht, 1994a; Gourevitch, 1998). Empirical studies of supportive interactions and influence gathered momentum during the 1980s (e.g., Albrecht, Irey, & Mundy, 1982; House,

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1981; Thoits, 1984; Wortman, 1984; Wortman & Lehman, 1985). Evidence for the causal link between social support and health/health status mounted, with studies repeatedly showing that formal and informal social support between and among intimates, friends, family members, acquaintances, task associates, strangers, and others had profound consequences for mental and physical well-being. Not surprisingly, the issue captivated social and behavioral researchers who began to document the process in early longitudinal, epidemiological studies (Berkman & Syme, 1979). The notion that network structures of social support and the processes of supportive communication behavior would impact health outcomes and mortality was conceptually groundbreaking and responsive to the criticism regarding the dearth of explanatory models for the relationship between social behavior and biomedical problems (Moss (1973) referred to this relationship as the concept of “biosocial resonation”). Investigation has continued to proliferate across the social and health sciences, describable now as a vast, multidisciplinary body of theory and empirical findings (e.g., Albrecht, Blanchard, Ruckdeschel, Coovert, & Strongbow, 1999; Klein & Milardo, 2000; Goldsmith et al., 2000; Goodwin & Plaza, 2000). The purpose of this chapter is to provide an overview of the prominent research areas regarding the impact of supportive communication on health. Several important literature reviews already exist (e.g., Burleson, Albrecht, & Sarason, 1994; Heaney & Israel, 1995; Uchino, Cacioppo, & Kiecolt-Glaser, 1996; Sarason, Pierce, & Sarason, 1990). However, most derive from the domains of interpersonal communication, sociology, health education, and social psychology. Our contribution is to provide a review of this terrain from the vantage point of health communication. We include a brief overview of the history of conceptualizing social support as communication, a summary of representative findings on the relationship between supportive interaction and health and illness, a discussion of promising frameworks and directions for research, and a review of the implications for further practice and interventions. HISTORY AND ORIGINS OF SOCIAL SUPPORT AND HEALTH COMMUNICATION

In his 1976 presidential address to the Society for Psychosomatic Medicine, Sidney Cobb, a physician, termed social support as one of three classes of information that “led the subject to believe that he/she 1) is cared for and loved; 2) is esteemed and valued; and 3) belongs to a network of communication and mutual obligation” (Cobb, 1976, p. 300). Cobb’s definition was one of the first well-developed conceptualizations of social support, noteworthy because early on he clearly framed support as a communicative process and structure bearing particular types of influence on the individual. A decade later, Albrecht and Adelman (1987) downplayed the individual-difference aspect of support as related to the individual’s “perceptions” (e.g., Eyres & MacElveen-Hoehn, 1983; Moss, 1973; Tolsdorf, 1976) and emphasized the notion that social support could vary in more or less functional or dysfunctional patterns based on variations in social interaction (see also Caplan, 1976; Kahn & Antonucci, 1980; Schaefer, Coyne, & Lazarus, 1981). As researchers continued to investigate the health effects of supportive relationships, measures of social support began to be refined in the 1980s. The interplay of theory and methodology laid a foundation for further conceptualization. More formal measures were developed (e.g., House & Kahn, 1985) and conceptual debates flourished, which, in turn, further shaped theoretical views of support (for a review, see Cohen & Wills, 1985). Communication is the natural core discipline of theory and research on social support (Albrecht & Adelman, 1984; 1987). Engaging in supportive interactions is an enactment of

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the need for human connection and meaning, so to interpret or render sensible one’s circumstances or life events in relation to health and emotional well-being. A health-enhancing supportive encounter is one where the value of the messages exchanged is based on the extent to which the information obtained is useful for managing health-related uncertainty (or information incongruities, Moss, 1973) and increasing the perception of personal control and the ability to act to achieve positive health goals (see Albrecht, Burleson, & Goldsmith, 1994). Social support is inherently a reciprocal process, occurring in socially constructed networks of close relationships (e.g., intimates, family/kin, significant others, friends) and weak ties (less-developed relationships between people who are less familiar with one another, e.g., acquaintances, strangers, coworkers, distant neighbors). In short, “social support” is an overlay for considering the interactional processes through which relationships and networks of clustered relationships manifest in helpful and sometimes unhelpful (Albrecht & Adelman, 1987) relational patterns. The perspective on social support in this chapter evolves from an earlier definition by Albrecht and Adelman (1987, p. 19): “Social support refers to verbal and nonverbal communication between recipients and providers that helps manage uncertainty about the situation, the self, the other or the relationship and functions to enhance a perception of personal control in one’s life experience” (p. 19). We emphasize the notion that supportive communication functions to help “manage uncertainty,” rather than reduce uncertainty (as originally conceived by Albrecht & Adelman, 1987), given recent research on life-threatening disease where messages conveying ambiguity about otherwise certain outcomes (e.g., death and dying) provide hope and motivation (e.g., Albrecht, et al., 1994; Brashers, Neidig, & Goldsmith, 2000; Ford, Babrow, & Stohl, 1996). Primary types of supportive communication include messages that help others gain perspective shifts on cause-effect contingencies, enhance another’s training or skills, promote behaviors that provide tangible assistance without feelings of undue or excessive reciprocal obligation, offer opportunities for others to engage in protected disclosure or venting of pent-up thoughts and emotions, and offer messages that provide acceptance and reassurance of another’s sense of self-worth, dignity, and face (Albrecht & Adelman, 1987; Goldsmith, 1994; Kalbfleisch & Bonnell, 1996; Keeley, 1996). The conceptual foundations and research debates of the past decades demonstrate that for understanding health communication, “social support” is not a single, unified construct. Greater value exists in viewing social support as an umbrella term for a providing a sense of reassurance, validation, and acceptance, the sharing of needed resources and assistance, and connecting or integrating structurally within a web of ties in a supportive network.

REVIEW OF LITERATURE: IMPACT OF SOCIAL SUPPORT ON HEALTH AND ILLNESS

The outcome of supportive communication on specific health indicators and disease trajectories is complex and varied. Beginning with the basic premise that the principal function of support is to manage health-related uncertainty, helpful supportive resources include 1) expressions of encouragement, hope, reassurance, caring, concern; 2) feedback about one’s health behavior and health risks; 3) general health information and modeling of healthy behavior for health promotion; 4) facilitating coping; 5) provision of lay referrals to professionals in the health system; and 6) assistance, especially with adherence to prescribed health regimens (Albrecht & Adelman, 1987; Brownell & Shumaker, 1985).

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Impact on Mortality and Morbidity

The extent to which social support actually prolongs life is a challenging research focus, given the need for longitudinal data and careful controls, both of which have been difficult to obtain. The extent to which supportive behavior contributes to the reduction of mortality and morbidity and improves the quality of life for patients, families, and communities remains relatively unknown, unexplored, and underfunded (Burish, 2000). The extant evidence is scattered but promising. Following the Alameda study (Berkman & Syme, 1979) showing decreased life expectancy for relatively isolated populations, studies have primarily linked life and death outcomes to support under conditions of chronic disease. Case, Moss, Case, McDermott, and Eberly (1992) found that individuals living alone, as opposed to those living with others, were twice as likely to have a second heart attack—and die from that attack—within six months of suffering the first one. Prominent work has shown a biomedical explanation for this relationship, demonstrating that support positively impacts the immune, endocrine, and cardiovascular systems (see a major review by Uchino et al., 1996). Interestingly, their analyses of findings from 81 studies showed that types of social relationships (particularly family ties) were consistently important in considering physiological functioning. Emotional support, in contrast to informational support, was a better predictor of neuroendocrine function. And, questions remain as to the interaction effect between interactional dynamics and personality predispositions (e.g., hostility, aggression) in affecting relationship quality and health indicators. Psychologists Cacioppo, Berntson, Sheridan, and McClintock (2000) described several ways in which social factors have adverse health outcomes. The implication for health communication from their important review is that positive social support cancels the negative consequences of social isolation by influencing recipients to have more adaptive coping responses to acute and chronic stress, improve patterns of health behavior, improve beliefs and attitudes about life and self-esteem, increase their hope for the future, and deepen their sense of life purpose. In addition to large-scale epidemiologic studies, there is also a growing body of research on the health effects of social support that is disease- or condition-specific. Two areas of research are illustrative examples. First, research on the effects of support on the coping and prognosis of cancer patients illustrates how support may effect treatment of and recovery from life-threatening illness. Second, research on the role of support in facilitating prenatal care and pregnancy outcomes for low-income women shows how support may affect preventive health care. Exemplar 1: Cancer Patients. Cancer patients in particular face a myriad of challenges in order to survive the diagnosis, treatment, and the social and health implications of their disease. The experience of cancer is arguably a time of stress and change. Either the patient turns to available sources of social support or others are prompted to initiate acts of help giving. Regardless, studies have shown patient preferences for different types of support from different sources (Dakof & Taylor, 1990; Neuling & Winefield, 1988; Rose, 1990). Supportive interactions related to cancer are complex and result in varying degrees of success or failure. Cancer survivors have identified specific areas that support attempts need to address: uncertainty about cancer recurrence; self-esteem; body image; somatic distress; a concern for family relationships; increased anxiety experienced by single as opposed to married patients; a desire for effective communication among the survivors, health professionals, and family members, and a need for consideration of the impact of

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employment and insurability issues (Gerlach, Gambosi, & Bowen, 1990; Kaplan & Miner, 2000). Much of the research on social support and cancer survival has been conducted on populations of women with breast cancer. The general conclusion from several studies has been that patients who confide their fears and concerns to loving close ties, such as a spouse or close friend, tend to fare better emotionally (Dunkel-Schetter, Feinstein, Taylor, & Falke, 1992; Lichtman, Taylor, & Wood, 1987). Primomo, Yates, and Woods (1990) found women with chronic illness perceive significantly more support of all types (e.g., emotional reassurance, affirmation, tangible assistance) from their partners/spouses than from others. Lichtman et al. (1987) found that the strength of the precancer marital relationship correlated with postcancer marital satisfaction for both spouses. Postcancer marital adjustment was somewhat associated with the patient’s adjustment to the disease experience. Reciprocity has been empirically shown to be a complex yet important dynamic in close supportive relationships. Vinokur and Vinokur-Kaplan (1990) found that wives (specifically long-term survivors) reported giving more assistance than they received, though husbands of recently diagnosed women reported giving more support than they received (their reports were corroborated by their wives’ reports). Alternatively, Northouse (1988) found that after surgery and beyond, mastectomy patients and their husbands showed a pattern of reciprocity of support in adjustment to the disease course. Support from kin and close friends is most specifically associated with patients’ adjustment to the disease. Although the presence of nonsupportive family and friends is limited, Lichtman et al. (1987) found that nearly half the patients in their study reported surprise at receiving at least one nonsupportive reaction. Gotcher (1992) found both women and men undergoing radiotherapy (women with breast cancer and men with prostate cancer) reported the importance of emotional support, especially valued when provided by family members. However, it was also found that when kin avoided uncomfortable topics, patient-caregiver relationships did not appear to be adversely affected. Zemore and Shepel (1989) found that women with breast cancer received greater emotional support from family and friends than did the control group. Tempelaar, deHaas, de Ruiter, Bakker, van den Heuvel, and van Niuwenhuijzen (1989) found sicker cancer patients reported receiving more help and support than those who were less sick. There is some evidence for positive effects of support group participation for cancer patients (e.g., Fawzy et al., 1993; Spiegel, Kramer, Bloom, & Gottheil, 1989). Such groups may be especially important for those whose own social networks have responded negatively or failed to provide desired forms of support (Bauman, Gervey, & Siegel, 1992; Ward, Leventhal, Easterling, Luchterhand, & Love, 1991). Research on the effects of support groups more generally is addressed later in this chapter in our discussion of support interventions. Exemplar 2: Low-Income Pregnant Women. Recent studies show that supportive communication emerges as a central determinant of the health and well-being of vulnerable populations as well. Data show that kinship support networks are deteriorating in low-income and minority communities due to unemployment, transience, and substance abuse (Roschelle, 1997). This is particularly troubling for the health of low-income pregnant women whose ability to access and utilize the health care system is directly a function of the type of tangible support available to them such as reliable transportation to the clinic (Aved, Irwin, Cummings & Findeisen, 1993; Blankson, Goldernberg, & Keith, 1994; Mikhail, 1999).

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In addition, supportive interactions impact the mother’s level of information, knowledge, experience, feelings, and perceptions about herself and the pregnancy. Informational support from others may help her recognize the symptoms of pregnancy (Maternal and Child Health Services, 1996), understand the reasons to seek care, and overcome perceptions of the exam procedures as relatively painful and difficult to endure (Byrd, Mullen, Selwyn, & Lorimor, 1996). Informational support will also help a low-income woman better navigate the complex and often daunting health care system by providing advice on when and where to obtain timely prenatal care services, referrals to physicians who accept Medicaid patients (and treat them respectfully), and information on whether care can be initiated while awaiting Medicaid eligibility approval (Omar & Schiffman, 1995; Meachen & Kelley, 1991; Zaid, Fullerton, & Moore, 1996). Access is affected by the pregnant woman’s supportive residential and relational environment. Those who are transient (Higgins & Woods, 1999) and/or living in distressed urban neighborhoods (Conrad, Hollenbach, Fullerton, & Feigelson, 1998; Perloff & Jaffee, 1999) have limited access. Unmarried women, those women lacking a relationship with the baby’s father, and those women who are victims of partner physical violence are less likely than women without these circumstances to connect with care services (D’Ascoli, Alexander, Petersen & Kogan, 1997; Wiemann, Berenson, Pino, & McCombs, 1997). As in access, the mother’s relational and residential environment is important for maintaining utilization of prenatal care services. Women who report social support from their partner are more likely to utilize care (Gazmararian, Arrington, Bailey, Schwarz, & Koplan, 1999; Schaffer & Lia-Hoagberg, 1997). THEORETICAL EXPLANATIONS

Whereas explanations for the processes and effects of social support are many and varied, with respect to health issues, two areas are especially fruitful for theorizing: the structural aspects of supportive relationships (i.e., networks) and the transactional processes occurring in those relationships. Communication processes are involved in developing and maintaining supportive networks and supportive relationships. In addition, communication processes are the medium through which support is provided to individuals as they cope with everyday stresses and health crises. Supportive Networks and Relationships

While supportive communication is most traditionally thought to occur in dyads and group settings, supportive interactions never occur in a vacuum. Rather, they occur within the context of larger support networks (i.e., sets of overlapping relational linkages, Albrecht & Adelman, 1987; Penner, Dovidio, & Albrecht, 2000). In short, researchers have directed attention to determining the patterns of communication that are most likely to create health protective social environments and enhance pathways for access to health resources. Researchers also posit a reciprocal relationship between support networks and health behaviors; networks of supportive ties both impact and are impacted by such risk factors as smoking or substance abuse and preventive practices such as screening for early cancer detection and enhanced physical activity (Heaney & Israel, 1995). To describe these patterns, support networks are characterized by a series of structural indices including size (the number of members of the network, such as the number of support providers an individual perceives in his or her relational horizon) and density (the extent to which network members are connected to one another, usually expressed as a ratio of the number of actual ties to the number of theoretically possible ties).

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Multiplexity/uniplexity refers to the extent to which relational partners are more closely linked through multiple roles, such as whether two people are not only friends but also coworkers and neighbors. Uniplex ties are limited to links where partners have a weak tie or singular role relationship (such as teacher-student) and hence their relationship is more limited in context, scope and character. Finally, homogeneity/heterogeneity demonstrates the extent to which members of the support network are similar or dissimilar in terms of sociodemographic characteristics, communication styles and behaviors, personality predispositions, and character traits. Nurturing, caring, and tangible assistance are likely to be expected and provided more readily in closer, multiplex, dense relationships, which also likely carry a presumption of reciprocity of supportive behavior for the future. Close ties also help reinforce and regulate health behavior. The social feedback model (Hammer, 1983), for example, demonstrates how dense, overlapping linkages can influence the distribution of disease and infection by providing social pressure to behave in ways that prevent the spread of disease and infection (i.e., regulating eating behavior to curb obesity, providing resources to increase physical activity, encouraging healthful behaviors such as hand washing or safer sexual practices). Whereas close ties provide comfort, safety, and assistance with adhering to health regimens, weak ties are more open, with fewer obligatory norms (Albrecht & Adelman, 1987; Penner et al., 2000), while at the same time providing a sense of attachment to a wider community and a sense of place (e.g., Unger & Wandersman, 1985). Support from weak ties likely increases the diversity or heterogeneity of one’s contacts while increasing information, goods, and services. With greater diversity comes the opportunity for increased social comparison that can help motivate and model improved health behavior. Weaker ties also have lower temporal reliability and fewer rules and norms, thus enabling lower risk discussion of higher risk topics related to personal needs and behavioral practices (see Parks, Adelman, & Albrecht, 1987). However, it is important to recognize that both close and weak ties are necessary to offset the limitations of each. Probably most noteworthy is that weak ties may be less reliable in times of health need and offer less security and sense of belongingness, though close ties may be resistant to change and overly protective, even delaying recovery (e.g., McLeroy, DeVellis, DeVellis, Kaplan, & Toole, 1984). Supportive Communication and Coping

A distinct and complementary way in which communication is involved in social support and health focuses on the ways in which messages or conversations about stresses can help or hinder individual efforts at managing everyday stresses and health crises. This message (or conversation) level of analysis of social support focuses on the particular actions that network members or relational partners undertake with the intention of helping one another cope. The focus of research is on 1) understanding the conditions under which enacted support has beneficial outcomes; and 2) on identifying the features of enacted support that might make some attempts at assistance more beneficial than others. As Gottlieb (1983, p. 51) has observed, studies of support networks and studies of support messages each provide useful information about social support and health: The study of helping behaviors gives us an appreciation of the content of support, and the study of network structure tells us how the social environment may be patterned or organized as a flexible system for maintaining health and responding to crisis. One body of research that is relevant to an understanding of how conversations provide social support is the literature that has measured the frequency of enacted support and its effects on health and well-being. Enacted support may be defined simply as the things

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relational partners do and say with the intention of helping one another manage problems and stresses. Several widely used measures of enacted support assess the frequency of various kinds of assistance an individual has received (e.g., how often others have provided tangible, informational, emotional, and appraisal support during the last month). Examples include the Inventory of Socially Supportive Behaviors (Barrera, Sandler, & Ramsay, 1981), the Arizona Social Support Interview Schedule (Barrera, 1981), and the Stress Questionnaire (Dunkel-Schetter, Folkman, & Lazarus, 1987). The findings on the effects of enacted support on health and well-being vary widely and seem initially contradictory (for reviews, see Cohen & Wills, 1985; Cooper, 1986; Dunkel-Schetter & Bennett, 1990; Leppin & Schwarzer, 1990). First, some studies find that individuals with more enacted support benefit, although these effects are usually evident only for some types of support and under some types of conditions (e.g., Cooper, 1986; Dean, Kolody, Wood, & Ensel, 1989; Lin, Woefel, & Light, 1985; Pennix, Van Tilburg, Deeg, Kriegsman, Boeke, & Van Eijk, 1997; Sandler & Lakey, 1982; Wethington & Kessler, 1986). Second, some studies report the counterintuitive finding that individuals who receive more enacted support report higher levels of stress (Aneshensel & Frerichs, 1982; Barrera, 1981; Cohen & Hoberman, 1983; Sandler & Barrera, 1984) and higher levels of distress (Barrera, 1981; Cohen & Hoberman, 1983; Coyne, Aldwin, & Lazarus, 1981; Fiore, Becker, & Coppel, 1983; Husaini, Neff, Newbrough, & Seymour, 1982; Kauffman & Beehr, 1986). However, it is possible to interpret these findings in ways that are nonetheless consistent with an intuitive belief that overall, enacted support is beneficial in coping with stress. For example, a positive correlation between amount of enacted support and stress might reflect the mobilization of social support, such that as stress increases, individuals seek out more support from their social networks (Barrera, 1986). Similarly, a positive correlation between amount of support and distress might reflect a triage model (Barrera, 1986) in which those who experience the greatest distress elicit the greatest amounts of help and aid from others. These correlations might even be expected to vary over time: The experience of distress might initially elicit higher levels of support (triage) and then, at some later point, these helpful overtures might result in an alleviation of distress (Schwarzer & Leppin, 1991). Further, a reason for the mixed, null, and negative findings on the effects of enacted support is that measures of the sheer amount or frequency of support received overlook the quality and appropriateness of the support. One may receive information and advice about how to cope with a health problem and yet find that the advice is uninformed and therefore of little use. Worse yet, the advice others give might lead an individual to feel that others are critical of his or her own coping efforts or that others are condescending by providing information the individual already knows. Well-intentioned efforts at support could create more stress in the form of relational conflict or increased uncertainty. Another body of research involves observing messages or conversations in which support is enacted and identifying what features of the interaction are associated with participants’ evaluations of the interaction. These studies elicit from strangers or relational partners a discussion of some stress or problem and then ask respondents to rate the perceived supportiveness or helpfulness of the interaction. Trained coders identify different types of support that are enacted in these conversations so that researchers may test whether different types or features of support are associated with greater or lesser recipient satisfaction with support. In some studies, individuals who do not participate in a conversation either rate a videotape of a conversation or rate hypothetical messages for their helpfulness. This work generally shows that specific features of messages or conversations are linked with participants’ (and/or observers’) perceptions that support is in fact helpful. However,

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these studies have usually focused on university populations and everyday stresses, so it is unclear whether similar behavioral patterns are typical or effective for other populations and for more serious kinds of stresses or illness. Although there is evidence that everyday stresses do contribute to health and well-being (e.g., DeLongis, Coyne, Dakof, Folkman, & Lazarus, 1982), it is nonetheless important to examine how support interactions may be similar and different in the context of coping with life-threatening disease or the ongoing demands associated with care giving or managing one’s own chronic illness. In addition, the outcome measures in these studies are typically participant satisfaction or observer evaluation, so it is unclear whether and how these perceptions may be related to health and well-being. Although these various types of research on support messages and conversations have different foci and different strengths and limitations, several generalizations about the features of effective enacted support have begun to emerge from this body of research. First, there is evidence that problem-solving forms of enacted support (e.g., advice, information, tangible aid) and emotion-focused forms of enacted support (e.g., expressions of concern, belonging, and esteem) may be beneficial under different circumstances (Cutrona & Russell, 1990). As illustrated in some studies, tangible support is beneficial only for those with serious health problems or high levels of disability. Tangible support may have no systematic effect, or even create negative effects, for those whose problems or disability are less severe, perhaps because these individuals do not need support and therefore experience aid as critical or intrusive (e.g., Pennix et al., 1997; Wethington & Kessler, 1986). Furthermore, of these two broad types of support, emotion-focused support may be more likely from a cultural standpoint to be perceived positively in a wider variety of situations (e.g., Cutrona & Suhr, 1992, 1994). In their review of 17 interventions targeting various health behaviors and markers of health status, Cwikel and Israel (1987) concluded that provision of emotional support was associated with stronger treatment effects than informational support. In contrast, the benefits of problem-solving support may be more contingent on the recipient’s needs and resources, the provider’s expertise, and the quality of the information, advice, or aid offered. Although emotional support may be beneficial in a wide variety of circumstances, it is still possible to differentiate more and less effective forms. Burleson and his colleagues have found that person-centered messages, which acknowledge, elaborate, and legitimate the feelings of a distressed other, are rated by respondents as more sensitive and effective than messages that reject, deny, or attempt to draw attention away from feelings (see Burleson, 1994, for a review). Burleson and Goldsmith (1997) suggested this is because messages that encourage elaboration of feelings assist the distressed person in reappraising a stressful situation and his or her coping resources. Informational support also may be delivered in more or less effective ways. Goldsmith and colleagues have studied some of the factors that shape reactions to advice (Goldsmith, 1994, 1999, 2000; Goldsmith & Fitch, 1997; Goldsmith & MacGeorge, 2000). The theories of nondirective or client-centered helping that form the basis for many support interventions and crisis-training programs frequently discourage advice giving as a response to others in distress. However, among laypersons, advice is a common type of social support offered in response to another person’s problem. It may be helpful in providing new solutions and communicating the speaker’s concern and desire to help, but advice can also be perceived as criticism or “butting in” (Goldsmith & Fitch, 1997). Recipients’ reactions to advice may be affected by the degree to which advice employs face work: features of a message or conversation that communicate respect for a recipient’s autonomy and acceptance for the recipient’s identity. Goldsmith has found that the content that accompanies

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a piece of advice (Goldsmith, 1999) and the sequence in which advice is introduced into a conversation (Goldsmith, 2000) are both associated with the degree to which advice is experienced as face honoring or face threatening. In turn, respect for face is associated with the perceived helpfulness of advice. Another generalization that emerges from the research on support messages and conversations is the importance of relational coordination in achieving satisfactory support outcomes. Talking about problems and stresses is a potentially problematic type of conversation, in which participants may experience challenges in determining how to 1) introduce problem topics into conversation and when to transition to other, lighter topics (Jefferson, 1984); 2) respond to others’ painful self-disclosures or to questions that may solicit them (Coupland, Coupland, & Giles, 1991); and/or 3) signal a departure from conversational norms so that one person may engage in extended narratives about a problem he or she faces (Metts, Backhaus, & Kazoleas, 1995). Although many studies have focused on the qualities and effects of the support provided in an interaction, the conversational contributions of the support seeker/recipient may also influence outcomes. For example, there is variability in the ways in which support seekers ask for help (Goldsmith & Parks, 1990). The degree to which help is explicitly or directly requested may also influence whether and how effectively it is provided (Barbee & Cunningham, 1995; Cutrona & Russell, 1990; Dovidio & Gaertner, 1983; Rosen, 1983; Wills, 1983). In addition, the ways in which a support seeker presents his or her coping abilities can affect how others react and their willingness to interact (Coyne, 1976; Silver, Wortman, & Crofton, 1990). Similarly, when relational partners have different ways of coping with a shared stressor, this may reduce their satisfaction with one another’s support attempts (e.g., if one partner wishes to avoid discussion of a problem or emotion while the other wishes to engage in discussion, Barbee & Cunningham, 1995; Gottlieb & Wagner, 1991). Given the range of dynamics above, several researchers have called for a revised conceptualization of social support in close relationships. This new framing of support casts it as a more complex dyadic phenomenon, in which partners must not only cope with a stressor but also cope with the relational strains created by the stressor and with the need to coordinate their individual coping attempts (Cutrona, 1996; Lyons, Sullivan, Ritvo, & Coyne, 1995; O’Brien & DeLongis, 1997). IMPLICATIONS FOR RESEARCH AND PRACTICE Research

Social support will continue as an important research area for health communication scholars. Several broad directions include longitudinal studies that track the overtime changes in the stability/instability of community support networks in vulnerable populations, such as low-income, minority groups (see Roschelle, 1997), studies evaluating support program interventions such as those described in this chapter (below) under “practice” implications, and increased testing of general biobehavioral models that include supportive relationships and psychoneuroimmunology, necessitating interdisciplinary scientific initiatives (e.g., see Andersen, Kiecolt-Glaser, & Glaser, 1994). However, considering specific health communication constructs, three key areas include further inquiry regarding the process of transacting support, the relative efficacy of the placement or type of channel used (e.g., electronic or computer mediated), and the context of supportive interactions (and cultural codes/expectations). First, analysis of real-time supportive transactions, as related to health issues, is gaining increased attention.

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Coping with medical information, particularly when facing life-threatening illness, can be overwhelming and highly stressful for patients and their families. Even highly educated patients may have difficulty following complex medical terminology, treatment alternatives, and regimens as well as developing a cognitive map to navigate the maze of the health care system (Albrecht et al., 1999). Heightened anxiety may exacerbate the near inevitability of error, miscommunication, and misunderstanding (Mortensen, 1997; Taylor, 1992). Preliminary work shows that supportive messages from providers may actually enable cancer patients to cope with their lack of technical understanding of medical terms and facilitate their ability to move forward with treatment decisions in a positive frame of mind (Albrecht et al., 1999). The opportunity to view the ways in which supportive messages enable people to tolerate their uncertainty and manage the experience of miscommunication regarding informational content (see Mortensen, 1997) is worthy of careful descriptive and experimental study. Second, with the advent of the digital and electronic age, alternative channels for support are more available, more accessible, and can serve a variety of needs. Work by Walther and Boyd (in press) and others in this novel area shows that support groups on the Internet abound; the most well known are those serving cancer survivors, caregivers, and people with chronic diseases. The benefits of instant access, anonymity, and participatory control (as noted above) provide alternatives for people seeking support but also seeking to meet needs regarding, timing, privacy, and quantity of support. As a source of weak tie support (Albrecht & Adelman, 1987; Walther & Boyd, in press), computer-mediated channels provide a wellspring of research opportunities, particularly for investigating how electronic sources of support can transcend the problems with traditional, face-toface contact (Walther & Boyd, in press). From a health standpoint, research is needed to track the ways in which computer-mediated support can reach high-risk populations that perhaps have not been traditional users of the Internet (e.g., homeless persons, low-income pregnant women, the elderly). Electronic support is an opportunity for greater access to the health system, monitoring of conditions and disease, information, and importantly, a relief from isolation and loneliness. The extent to which this is feasible and effective is yet to be determined at a community level. Further investigation of situationally specific needs is also important for capturing the subtle and complex ways in which support may meet (or fail to meet) task, emotional, and relational needs (Goldsmith et al., 2000). Such analysis will also help with understanding the reasons why support attempts may falter in missing the needs of recipients. For example, head and neck cancer patients face mortality concerns as well as altered appearance and functional impairment. While perceptions of the availability of support are associated with lessened depression, received support is associated with more depressive symptoms (De Leeuw, De Graeff, Ros, Hordijk, Blijham, & Winnubst, 2000) suggesting that enacted support falls short of meeting the depth of their psychosocial needs. In another example, praise or other more obvious messages of support may lose impact over time in relationships where larger rewards/costs are at stake (i.e., health professionals in task environments). Instead, supervisors’ messages about innovation or new treatment strategies have correlated highly (e.g., r = .78) with global judgments of support (Albrecht & Halsey, 1992). Finally, the social/relational, physical, and temporal context in which support is sought, provided, and transacted is a key target for further study. Albrecht et al. (1994) noted that the findings on supportive communication are culturally bound to limited settings and contexts. However, health issues in particular are often defined in terms of cultural standards, meanings, and expectations. Tracking the mechanisms by which social support is

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transacted and understood to impact health outcomes across contexts has important theoretical and applied implications. In some Asian and Middle Eastern cultures, for example, the family network regulates health decision making and information exchange for the patient. The relative meaning of “supportive behavior” and “for whom” is a culturally framed practice. Historical contexts readily emerge as important, as well. Network studies concluding that tightly knit communities are uniformly problematic for change and promoting action are ignoring the evidence of the rescue networks among strangers and acquaintances in Denmark that mobilized overnight to save 8,000 Jews from deportation to death camps. Overlapping structural ties together with a strongly shared value system and communication code enabled spontaneous, prosocial, large-scale coordination (see Albrecht, 1994a). Such comparative cultural evidence also expands the “strength of weak ties” notion beyond what has been previously understood. Finally, motives for helping and for help seeking may well be mediated by cultural expectations and norms. In particular, much of what is known about social support regarding events of loss and trauma are based on studies of close relationships in the United States and has not expanded to the level of comparisons across individualistic versus collectivistic systems (e.g., Penner et al., 2000; Penner, 2000; Penner & Finkelstein, 1998; Penner, Rioux, & Tilman, 1997). Practice

The practical implications of social support are the basis for much of the widespread interest in this topic. In his early and influential essay, Cassel (1976) suggested it was likely to be more immediately feasible to attempt to improve and strengthen an individual’s social support rather than reduce the exposure to stress. Consequently, research on social support held great promise for improving preventive health services. As a result, there is a large body of descriptive and evaluation-based studies on various social support interventions. Many different kinds of programs are subsumed under this umbrella, from one-on-one peer support or problem-solving assistance to self-help and support groups, to programs that attempt to increase interaction within a neighborhood or apartment building, to public health campaigns that attempt to change attitudes toward seeking and providing help and aid. This body of work is obviously important in its own right in documenting the ways in which findings on social support may be applied to bring about improvement in individuals’ lives. It also has the potential to provide a testing ground for some of the causal relationships between support and health that are inferred from the kinds of studies that are largely correlational and often cross-sectional (Ell, 1984; Rook & Dooley, 1985). Despite the large number of intervention programs that have been reported in the literature, the evidence for their effectiveness is somewhat problematic. There is considerable evidence that support interventions can be effective (e.g., Cwikel & Israel, 1987; Gottlieb, 1983; Iacovino & Reesor, 1997; Wortman & Conway, 1985). However, many studies simply presume that social support is a good end and provide anecdotal reports of program success stories; even those studies that include an evaluation component often do not provide sufficiently rigorous tests of effects. In their 1987 review, Cwikel and Israel estimated that only 20 to 25% of social-network or social-support intervention studies used experimental designs that permit conclusive findings regarding the effectiveness of the intervention. As Baumgarten and her colleagues (1988) observed, research investigators, mental health planners, and members of the general public have strong beliefs concerning the ability of social support interventions to produce beneficial effects on well-being.

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These beliefs are founded on a modest empirical foundation and may persist because they embody values that many wish to foster. There are a number of reasons why it may be difficult to conduct rigorous evaluation of social-support interventions. One difficulty concerns the kinds of outcomes and evidence that constitute criteria for evaluation. Interventions may have greater impact on quality of life or recipient satisfaction than they do on policy-relevant outcomes such as institutionalization or reduced need for professional services (Gottlieb, 1985; Kiesler, 1985). In fact, to the extent that social-support interventions entail advocacy for the needs of support recipients, they may actually increase the use of services (Chapman & Pancoast, 1985). A related issue concerns how much is expected of support interventions. Those who are most disadvantaged in society may face such extreme environmental challenges that social support may only reduce the rate of health or economic decline or lessen the magnitude of stressful difficulties, rather than alleviating problems entirely. Another difficulty with evaluating intervention programs derives from potentially competing considerations: designing maximally effective programs versus isolating what features of the program contribute to effects. Individuals facing serious life stresses are likely to have multifaceted needs or support deficits that require multifaceted services or interventions. This makes it difficult to determine which components of an intervention are most effective and why. For example, the Lifestyle Heart Trial (Billings, Scherwitz, Sullivan, Sparler, & Ornish, 1996; Ornish, 1990; Ornish et al., 1990) has reported remarkable physiological and psychological effects, including some reversal of cardiovascular disease. However, the program includes multiple components in addition to the provision of support (e.g., smoking cessation, exercise, diet, stress management). The ability to separately test each of the various components of such a program may be limited by the number of volunteers who are willing to participate. There is also the ethical concern of randomly assigning participants to a unidimensional program in light of evidence that a multifaceted program saves lives. Given these complications, and the need for more research that provides evidence of intervention effectiveness, Cwikel and Israel (1987) provided the following suggestions for studies on social-support interventions: 1) perform randomized controlled trials and carefully conducted quasi-experimental designs, which are advantageous; 2) provide information on acceptance rates among volunteers, attendance, and drop-outs; 3) choose measures of effects that correspond to the psychological, physical, or behavioral changes intended; 4) measure change in social network characteristics and perceptions of social support to establish whether the intervention functioned as expected; 5) conduct long-term follow-up; and 6) describe and evaluate the actual intervention processes involved. The development and evaluation of social-support interventions has also been limited by the state of theory development in research. As Lanza and Revenson (1993) noted, research is at a stage where enough is known about support processes to design interventions, yet not enough to know how and why these interventions should work. Unless program designers know what it is about social support that works, and through what processes positive effects occur, it is difficult for them to target interventions and know what processes to facilitate (Heller & Rook, 1997; Kiesler, 1985). Rook and Dooley (1985) concluded this is perhaps the “most pressing issue requiring attention” (p. 23). ETHICAL CONSIDERATIONS

We find it difficult to separate the study of social support from a consideration of ethical issues. There is often an ethical motivation for choosing to study social-support, in that

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supportive communication, supportive relationships, and supportive networks embody some of what is best and most altruistic in human beings (Albrecht, 1994b). At the same time, study of the human needs that inspire social support should also force us to confront societal inequities and disparities in work conditions, access to health care, distribution of resources, and vulnerability to stress and disease (Pilisuk & Minkler, 1985). Indeed the origins of the social-support concept reflect both a moral agenda to improve life and some potentially questionable sociopolitical pressures to do so in ways that are inexpensive (e.g., by utilizing people’s own networks rather than costly professional or social services) and least likely to disrupt the status quo (e.g., by changing the individuals who suffer from stress rather than changing the environmental conditions that create it). Ethical questions are unavoidable when taking theory into practice and attempting to design interventions (Brownell & Shumaker, 1985). Is enough known about support to be able to design programs that will provide benefits commensurate to the expenditure of scarce resources, commitment of time and energy, and trust of research participants? Is enough known to be confident that selected interventions will do more good than harm and not unleash some of the potentially detrimental facets of support? Are interventions occurring not only at the level of individual agency and personal relationships but also at the larger structural levels that contribute to disparities in access, resources, stress, and vulnerability? Are efforts directed to areas of greatest need rather than to areas of greatest familiarity and convenience? Are interventions that are planned and directed by members of one sociocultural group sufficiently sensitive to the needs, values, and practices of other groups? Internet support groups for various life stresses and illnesses provide an interesting case study in which to raise many of these questions. Among academics, lay participants, and funding agencies there has been an explosion of enthusiasm for and research on social support provided in electronic media and several studies report beneficial effects of participation in these groups (e.g., Alemi et al., 1996; Bass, McClendon, Brennan, & McCarthy, 1998; Dunham et al., 1998; Hawkins et al., 1997; Heller, Roccoforte, Hsieh, Cook, & Pickett, 1997). Computer-mediated support groups may increase access to similar others for individuals who are physically disabled or who cope with rare diseases, reduce the stigma experienced in face-to-face interactions, increase comfort in disclosing difficult topics, and provide an opportunity to produce an uninterrupted narrative. However, just as early research on face-to-face support was characterized by optimism and then tempered by studies that documented negative effects of support, so too, research on Internet support groups is beginning to document negative interactions in Internet support groups, negative effects of excessive participation in Internet groups, and variability in the supportiveness of group dynamics (Krautet et al., 1998; Alexander, Peterson, & Hollingshead, in press). Computer-mediated support groups may suffer from unregulated negative or critical messages, provide inaccurate information, and decrease involvement in more multiplex face-to-face relationships. In addition to the need to collect more information on the relative effectiveness of computer-mediated support groups, as well as on the design features that optimize their benefits, several ethical questions should be addressed. For example, are Internet support resources widely accessible? If not, what are the implications of shifting research and funding priorities to a study of Internet support as compared to other kinds of interventions? Even as access to Internet support increases, is this a source likely to be considered credible and plausible among those populations with greatest need? Access to technology may not be the only barrier to implementing Internet support—sociocultural differences in the uses of and attitudes toward technology may also prevent Internet support groups from reaching

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some segments of society. What part of the enthusiasm for researching Internet support groups is motivated by the convenience of access and the researcher’s own familiarity with and use of the Internet? Does this detract from other interventions that may be more appropriate for other needs and in other populations? CONCLUSION

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14 Everyday Interpersonal Communication and Health Rebecca J. Welch Cline University of Florida

Health communication, as an area of theory, research, and practice, focuses on the relationships between communication and health, health attitudes and beliefs, and health behavior. Health communication research has focused more on formal than informal contexts. When investigating informal contexts, researchers have attended more to mass than to interpersonal communication. The purpose of this chapter is to address the “missing box,” the role of everyday interpersonal interaction as an arena of health communication. The chapter presents a rationale for exploring everyday interpersonal communication and health and offers social influence as a theoretical framework for that exploration. HIV/AIDS is argued a fruitful context for exploring the interrelationships of everyday interpersonal communication and health. Reviewing literature on the various roles of everyday interpersonal interaction and HIV/AIDS helps to clarify the potentially powerful and often neglected influence of everyday interaction on health and provides road signs for future research and practice. RATIONALE FOR EXPLORING EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH

A cursory overview of the status of health communication scholarship identifies patterns of phenomena that researchers have addressed and neglected. Initial explorations yield glimpses of the role of everyday interpersonal communication and health, hinting at the possibilities. Status of Health Communication Scholarship

Communication rapidly is becoming recognized as a significant factor in health care and promotion. Health communication has become a vital part of national public health efforts

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as evidenced by the recent development of offices of communication at the Centers for Disease Control and Prevention; the opening of the Health Communication and Informatics Research Branch at the National Cancer Institute in 1999; and the recognition of health communication as central to the “prevention agenda for the nation,” as identified in the Healthy People 2010 objectives (Office of Disease Prevention and Health Promotion, 2000). A critical look at the field points simultaneously to limitations and directions for future research. Health communication emphasizes some phenomena to the neglect of others. From a systemic perspective, health communication occurs in both formal and informal everyday contexts; however, formal contexts have been studied to the relative neglect of informal contexts. Large bodies of research address formal interpersonal contexts, specifically provider-client interaction (most frequently physician-patient interaction) (see, e.g., Cline & McKenzie, 1998; Thompson & Parrott, 2003). Similarly large bodies of research address formal attempts to change the public’s health behavior via health communication campaigns (with substantially more focus on the role of mass media than interpersonal communication, although researchers agree that interpersonal communication plays a powerful role in changing health behavior and must be addressed by campaigns in order to be successful) (e.g., Maibach & Parrott, 1995; Piotrow, Kincaid, Rimon, & Rinehart, 1997; Rice & Atkin, 2001). When health communication scholars have addressed the roles of everyday informal communication and incidental messages in influencing health, they attended more to mass than interpersonal communication. Research addresses the roles of television (e.g., Signorielli, 1998; Strasberger, 1995) and news (e.g., Dearing & Rogers, 1992; Kinsella, 1989), with less attention to other forms of popular culture (e.g., advertising, movies, billboards, musical lyrics, magazines) (e.g., Krishman, Durrah, & Winkler, 1997; Schooler, Basil, & Altman, 1996). When health communication is construed as occurring in a matrix of formal and informal communication contexts in which planned and incidental everyday messages abound, in both mediated and interpersonal forms, everyday interpersonal communication emerges as “the neglected box.” When addressed, this topic has been explored in fragments. Glimpses of the Role of Everyday Interpersonal Communication in Health

A wide array of illustrations, cutting across numerous health and disease contexts, provides glimpses of the significance of everyday interpersonal interaction in health. Just “plain talk” has health-related functions. Lynch (1985) and associates (Lynch & Rosch, 1990) investigated the influence of talk versus silence on physiological responses; simply talking changes one’s heart function, raising blood pressure and heart rate. Risk-taking behavior (e.g., taking drugs, drinking) may influence interpersonal communication. For example, Monahan and Lannutti (2000) studied alcohol as a “social lubricant” (p. 175) and found that drinking alcohol blocks otherwise existing behavioral inhibitions among women with low social self-esteem, resulting in greater self-disclosure. Everyday interaction plays a significant role in labeling illness. A mass psychogenic illness in a high school, resulting in the need for emergency treatment, initially was attributed to exposure to toxic gas but later found to be associated with social rather than medical or environmental conditions (Jones et al., 2000). In fact, deciding whether one is “ill,” and the timing of that labeling, often are influenced by social interaction (Mechanic, 1966).

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Everyday social networks may serve to disseminate health information or, conversely, to reinforce risk-taking behavior as a social norm. Tardy and Hale (1998) examined the role of informal interpersonal social networks among women in a toddlers’ play group where talk functioned to influence mothers’ health decision making. In contrast, Dorsey, Scherer, and Real (1999) found the frequency with which college students talk about drinking and potential consequences in nonpeer support networks correlates positively with drinking in excess. Such casual interaction may reinforce excessive drinking as a social norm. One commonly investigated phenomenon of everyday interpersonal communication with implications for health is helpful and unhelpful communication. Typically studied under the rubric of “social support” (Albrecht, Adelman, & Associates, 1987; Burleson, Albrecht, Goldsmith, & Sarason, 1994; see the chapter in this volume by Albrecht and Goldsmith), this area focuses on the functions of everyday interaction in helping people manage uncertainties (e.g., coping diagnosis, illness, treatment, recovery). Ironically, communication with those closest to us sometimes endangers well-being. Observers attribute much adolescent risk taking to peer influence (e.g., Alberts, MillerRassulo, & Hecht, 1991). In social contexts, communication can function to recruit others to engage in risky behavior, such as smoking or drug use (e.g., Ferguson et al., 1992; Trost, Langan, & Kellar-Guenther, 1995), to resist recruitment (e.g., Alberts, et al., 1991; Harrington, 1995), and to intervene to halt or reduce risk-taking behavior (Seibold & Thomas, 1994; Thomas & Seibold, 1995). Although explanations of adolescent risk taking tend to focus on peer influence, research indicts family communication as well. Communication with both peers and family members, in the forms of teasing and criticism, may influence body image, which, in turn, relates to eating disorders (e.g., Schwartz, Phares, Tantleff-Dunn, & Thompson, 1999). Understanding that everyday interpersonal communication plays a significant role in health behavior, health educators and public health professionals created interpersonal skills interventions for teens. Much of that advice can be simplified to “just say no.” Lewis (1994) criticized this approach, arguing that identity and relational concerns often supersede health-related intentions. Asking adolescents to simply refuse offers requires them to subvert their self-presentation or relational goals or at least to send a “mixedmessage.” Thus, typical health education fails to address how adolescents can negotiate multiple goals in the context of a social situation without violating social norms. Indeed, the diverse though scant literature on the role of everyday interpersonal communication in health reinforces the primacy of identity and relational goals over instrumental goals. For example, research indicates that sharing cigarettes can function as a way of meeting friends (Eckert, 1989). In refusal situations, although adolescents may be able to “just say no” to strangers (Alberts et al., 1991; Trost et al., 1999), doing so with friends and acquaintances is unlikely. In the latter case, adolescents prefer strategies that avoid rejecting the other person and have the potential to sustain the relationship. In interventions, as well, among both family members and peers, identity and relational goals tend to compete with instrumental goals (e.g., Seibold & Thomas, 1994; Thomas & Seibold, 1995). In summary, everyday interpersonal talk plays a significant role in health. Influences of everyday communication on health: (1) are anchored more in the social reality and social norms of participants than in health knowledge, health information, and traditionally defined health beliefs and behaviors; (2) are embedded in social situations that can be understood only through the realities of the participants; (3) may be positive or negative; and (4) may be planned or incidental. Taken as a whole, this potpourri points to social influence as a framework for organizing and advancing our understanding of everyday interpersonal communication and health.

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EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH AS A MATTER OF SOCIAL INFLUENCE

Neither traditional social psychological nor communication approaches to understanding social influence would have included the study of everyday interpersonal communication as it relates to health-related outcomes. Traditionally, social psychologists emphasized the unilateral function of social influence for control within group contexts (e.g., Moscovici, 1976) and characterized social influence as “a collection of processes” (Edwards, 1990, p. 2) (e.g., social conformity, attitude change and persuasion, power and authority, obedience, modeling, social norms) rather than a coherent unified whole. Traditionally, communication scholars cast social influence in the premises and language of “persuasion.” Persuasion was viewed as a linear process, embedded in a one-to-many framework and preoccupied with actions and issues, thus centered on instrumental goals and outcomes. However, over time, social influence evolved to include the role of “everyday” interpersonal communication. Contemporary Social Influence Theory

Contemporary social influence theory focuses on the social realities of participants with implications for understanding social influence messages and meanings from their viewpoint. Social psychologists contributed a focus on “social reality” and social norms; communication scholars offered the significance of messages, meanings, and a transactional perspective. Everyday social influence is understood to define social realities and social norms and to constrain interaction and behavior accordingly. Social psychologists cast social norms as “the key idea” or unifying construct in social influence (Turner, 1991, p. 2). From a contemporary perspective, social influence consists of “the processes whereby people agree or disagree about appropriate behaviour, form, maintain or change social norms and the social conditions that give rise to, and the effects of, such norms” (Turner, 1991, p. 2). The concept of “social norm” invokes a sense of “oughtness” as people justify actions in terms of moral obligations and rightness woven into a validating social reality. Communication scholars initially cast social influence in the premises and language of “persuasion,” but over time came to endorse three premises about social influence. First, they embraced interpersonal communication as persuasion under the rubric of compliance gaining (e.g., Miller, Boster, Roloff, & Seibold, 1987; Seibold, Cantrill, & Meyers, 1985). Second, communication scholars wrestled with juxtaposing traditional views of persuasion that implied linearity and intention, with premises about interpersonal communication as transactional and spontaneous. In turn, they questioned the necessity of intention and conscious awareness to socially influence (e.g., Miller et al., 1987). Berger and Douglas (1982) cautioned that many interactions can be characterized in terms of “mindlessness” (p. 43). Thus, the concept of “goal” as a conscious objective may be unnecessary in characterizing social influence. Third, communication scholars came to recognize the multifunctionality of communication. Clark and Delia (1979) identified three kinds of objectives explicitly or implicitly embedded in every communicative transaction: (1) instrumental objectives, seeking responses involving a task, (2) interpersonal objectives, involving establishment or maintenance of a relationship, and (3) identity objectives, related both to managing selfpresentation and facilitating the other’s identity management. Historically, instrumental or task-oriented goals have been “studied vigorously” (Newton & Burgoon, 1990, p. 479), while relational and identity objectives received scant attention. Thus, thinking regarding

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the study of social influence evolved to include interpersonal transactions, “mindless” behavior, and multiple functions. Social Reality and Social Norms: The Basis for Everyday Interaction

The concepts of socially constructed reality and social norms are central to understanding social influence. As both products of and templates for everyday interpersonal interaction, socially constructed realities provide blueprints for formulating meaning and guiding behavior. The Social Construction of Reality

Berger and Kellner (1964) and Berger and Luckmann (1966) cast everyday interaction as significant in creating a “shared reality.” “Everyday knowledge,” or what “everyone knows,” flows from continuously validating everyday interaction that creates “intersubjective” realities. Socially constructed realities are so unconsciously and continuously reinforced that they come to be experienced as “objective.” Socially constructed realities become the template for human behavior. Reality hardened by intersubjectivity makes “evident” what is “real” and, in turn, “appropriate” behavioral responses. That sense of “appropriateness” constitutes what we term social norms. Thus, everyday talk and everyday language play powerful roles in constructing realities and social norms for operating within those realities. The Centrality of Language. As Berger and colleagues (Berger, 1995; Berger & Bradac, 1982) argued, the only means for “knowing” anything is through experience and all experience is mediated through language. From a health perspective, social interaction provides the basis for the “reality” and “meanings” of such basic concepts as “health,” “illness,” “disease,” and “risk.” Within social contextual boundaries (whether family, peer group, or culture), social interaction yields social norms regarding the meaning of and reaction to specific health states and diseases. Language surrounding a particular disease not only labels it, but also frames the disease in larger perspectives and builds relationships with other concepts, yielding schema for the disease. Schema may be understood as networks of meaning; thus, the use of a single term, ostensibly to denote a particular pathology, comes to invoke expanded systems of meaning that go well beyond biomedicine to function as a blueprint for human behavior. Although some language use is “thoughtful,” (Berger & Bradac, 1982, p. 113), much of the time individuals pay minimal attention to highly repetitive everyday interaction. Berger and Bradac (1982) use the phrase “metaphors which people live by in the conduct of relationships” (p. 124) as they point to the role of language in providing the basis for behavior. Meanings We Live By: Metaphors as Behavioral Blueprints. “Metaphor is pervasive in everyday life” (Lakoff & Johnson, 1980, p. 3). In everyday talk, we constantly refer to one thing in terms of another; what we know about the second phenomenon provides some understanding of the first. The power of language rests in its metaphoric nature (e.g., Hawes, 1975); we do not process symbols as discrete phenomena, rather we use symbols in patterns, invoking whole systems of meanings beyond apparent referents. Thus, a single word can come to stand for a fully developed metaphoric blueprint for the situational reality and serve as a model to guide human action.

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The Meanings of Everyday Interaction vis-a-vis ` Health

Traditional approaches to social influence focused on intentional phenomena and instrumental goals to the exclusion of other sometimes competing goals. Clearly the reviewed glimpses of everyday interpersonal health communication indicate that health-influencing messages are not necessarily (nor even likely) to be intended to influence health nor contain explicit health content. Messages and meanings leading to health outcomes often have little to do with health content in actors’ minds. From a public health perspective, instrumental goals are primary (i.e., changing health behaviors). For example, from a public health frame, one teen offering another teen a cigarette is understood as the solicitation or recruitment of risk taking; the outcome is understood in terms of enhanced or diminished risks to health. However, from the participants’ perspective, offering a cigarette may symbolize friendly or confirming interaction. To understand the functions of everyday interpersonal communication in health, researchers need to expand the frames of meaning for investigation to include identity and relational management. EVERYDAY INTERPERSONAL COMMUNICATION IN THE HIV/AIDS EPIDEMIC

Understanding the potential roles of everyday interpersonal communication in health may help in discovering points of intervention and efficacious strategies for health-promoting and disease-preventing social influence. HIV/AIDS provides a territory for exploring those roles. HIV/AIDS as a Territory for Exploring Everyday Communication and Health

In the past two decades, no disease captured the American public’s attention more than HIV/AIDS. By virtue of its magnitude and the tentacles of its meanings, HIV/AIDS emerged as the number one health problem in the public’s mind and the most stigmatizing disease in contemporary times. The more than 810,000 cases diagnosed and 467,000 deaths attributable to AIDS by the end of 2001 (Centers for Disease Control and Prevention [CDC], 2001) are only suggestive of impact. The magnitude of impact includes health care costs and social, psychological, relational, and economic effects on partners, family, friends, coworkers, neighbors, schoolmates, and health care providers. Early in the epidemic, the disease was associated with an array of social and health problems and marginalized populations. The tapestry of meanings of HIV/AIDS was woven with the threads of drug use, unwanted and teen pregnancy, other sexually transmitted diseases, and violence. Gay men, prostitutes, drug-users, ethnic minorities, and the poor dominated the HIV population constructed in the public’s mind. In time, HIV/AIDS emerged as an interpersonal epidemic both in etiology and social impact. HIV infection occurs most often in interpersonal if not intimate contexts (in sexual encounters, via needle sharing, in maternal care). Quickly, prevention messages were framed as interpersonal advisories: “know your partner,” “negotiate condom use,” and “don’t share needles.” Interpersonal dilemmas driven by stigma characterize the experiences associated with the disease, as HIV/AIDS became defined as a disease of “us” versus “them.” The social reality and resultant consequences of HIV/AIDS grew directly from the meaning-laden nature of the disease. With reactions driven more forcefully by schema associated with AIDS than by biomedical/clinical information, “AIDS has turned out to be one of the most meaning-laden of diseases” (Sontag, 1990, pp. 179–180). Thus,

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HIV/AIDS, in its inseparable health and social contexts, offers a window into understanding the significance and varied roles of everyday interpersonal communication in health and risk contexts. The Social Construction of HIV/AIDS

The social construction of HIV/AIDS is both a product and process of everyday talk. The social construction emerging from everyday talk provides a framework of meaning that, in turn, drives everyday interaction associated with the disease. The Socially Constructed Identity of AIDS

The course of the development of the AIDS epidemic in the United States, and responses to it by both the public and policymakers, contributed to a socially constructed identity in which the disease has both gender and sexual orientation. Historical accounts of how the epidemic was reported both in epidemiological and social circles clarify how AIDS came to be “a gay man’s disease” in everyday vocabulary (see, for example, Kinsella, 1989; Shilts, 1988). Despite the fact that officials at the Centers for Disease Control and Prevention (CDC) thought they were alerting the public via routine reporting channels (i.e., the Morbidity and Mortality Weekly Report [MMWR]) about early and as yet unlabeled cases of AIDS, both health and news professionals ignored the emerging epidemic due to its association with gay men. Press response to the first AIDS-related MMWR (CDC, 1981, June), which reported a deadly outbreak of pneumonia among five otherwise healthy gay men in California, was nominal (Kinsella, 1989). By late 1981, MMWR had run several articles on what the CDC was calling the “epidemic of immunosuppression” (Kinsella, 1989, p. 15), with little resulting media attention. As Kinsella argued, had early AIDS cases been in aging white, middle-class men (as was Legionnaire’s disease), clinical and public attention would have been tidal wave in proportion. Instead, AIDS was virtually ignored in the news media, and thus, was largely unknowable by the public. Although news media eventually attended to AIDS, much early coverage proved harmful by reflecting a polarity of realities, ranging from anyone can get AIDS and easily to only gay men are at risk. Neither reality was helpful in constructing health risks for the public. For example, a 1988 Cosmopolitan story on AIDS claimed “There is almost no danger of contracting AIDS through ordinary sexual intercourse” (Kinsella, 1989, p. 8). A few months later, Newsweek (Sex in the age of AIDS, 1988) cited Masters, Johnson and Kolodny’s (1988) claim that AIDS could be spread via casual contact (implying transmission via tears, toilet seats, sweat, etc.). The competing realities contributed either to unnecessary panic and fear or to a glib “not me” reality. At the same time, what could have been helpful information to the public was missing. Notably absent was “any guidance concerning action the public could take to avoid transmission of the virus” (Roth, 1990, p. 7). The process of labeling the disease went hand in hand with news coverage (and its absence) in developing and hardening a reality in which the disease was delimited by gender and social orientation. That social construction permitted denial of vulnerability among every other population. The Language of AIDS: Labeling an Emerging Epidemic, an Epidemic of Labels

Early labels explicitly associated AIDS with gay men. As the disease progressed, dysfunctional language reinforced moral judgments and interfered with rational understanding of risk and efficacious approaches to prevention.

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Among the terms that emerged for AIDS by 1982 were “gay cancer,” “gay pneumonia,” “the gay plague,” and WOGS (wrath of God syndrome) (Treichler, 1988). Doctors unofficially used terms like ACIDS (acquired community immune deficiency syndrome) and CAIDS (community acquired immune deficiency syndrome); the first official label was GRID (gay-related infectious disease). These labels established AIDS as a “gay disease,” and focused attention on “communities” or groups of people. This “group” identity functioned to define AIDS as a disease of “others.” Such labels shifted public attention and everyday discourse away from the causes of the disease and risk-taking behaviors to attention on “who has the disease.” The public came to accept and use language that cast judgment on people with the disease; the infected people rather than the risk behaviors emerged as what were to be avoided. Shilts (1988) identified examples of dysfunctional language surrounding AIDS. The term bodily fluids came to summarize routes of transmission of the disease, largely due to an unwillingness to use explicit language (e.g., “semen” and “vaginal fluids”) in public discourse. The term engendered the notion that AIDS could be contracted through casual household contact (e.g., through tears or sweat). As diagnostic tools emerged, the language surrounding AIDS created a contagion of meanings. The term exposed to the virus, used to explain a positive HIV test, hid the reality that having the antibodies meant having the virus. This simple euphemism mystified the disease and inadvertently fed the myth of HIV as airborne. Unwillingness to use explicit language played a significant role in failing to provide clear prevention guidelines to the public once modes of transmission were identified. Unwillingness to use terms like penis, vagina, condom, and anal intercourse disallowed clear public discourse that influences private behavior. For example, The New York Times failed to print the word “penis” until the 1993 Bobbitt case. Network television refused to air condom advertising. Ongoing debates about using the word “condom,” condom advertising, and teaching condom use as prevention contributed to a social construction in which “condoms” themselves came to have stigmatizing moral overtones in everyday interpersonal contexts. Metaphors of AIDS: An Emerging Epidemic of Meaning

Metaphors provide conceptual maps for thinking about diseases. Each identifies the role of the infected person and implies a prototype of responses both to the disease and the infected. Sontag (1978), in analyzing metaphors of cancer, uncovered patterns of language in which cancer was associated with punishment, energy, warfare, death, and pollution. AIDS provided a yet more stigmatizing disease. With the early identification of Kaposi’s sarcoma as an indicator, AIDS took on many metaphors of cancer and then some. These metaphors functioned to polarize concepts and people, to stereotype both the disease and the infected. Metaphors of AIDS so commonplace as to be invisible to the everyday person include associations with war/military, pollution, plague, crime, and otherness/civic divisiveness (Ross, 1988; Sontag, 1990). Casting AIDS in military terms (e.g., “the war on AIDS”) framed the disease and its sufferers as the “enemy” to be “conquered,” invoked “otherness,” and attributed evil or fault. As Sontag (1990) noted, “the move from the demonization of the illness to the attribution of fault to the patient is an inevitable one” (p. 99). The virus “lurks” and “triggers” symptoms when it “attacks” the body (Ross, 1988; Sontag, 1990). Those who “‘harbor’ the virus are like spies in our midst” (Ross, 1988, p. 44). Calls for tracking and quarantine are calls to “locate” and confine the enemy (Ross, 1988, p. 45).

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Concepts of “pollution” cast the virus and the people carrying it as pollutants to be “contained.” The plague or punishment metaphor extends the pollution metaphor, casting AIDS as a “collective” calamity (Sontag, 1990), “inflicted” as “punishment for sin” (Ross, 1988, p. 41), “retribution” for the actions of a “community.” Plagues are thought to come from “somewhere else” (emphasizing “otherness”). Viewing a disease as pollution and plague casts the infected as pollutants and sinners. Concepts of AIDS as pollution and punishment overlap with concepts of crime. The virus “lurks” (like a criminal) and “strikes” its “victims,” rendering judgments of “guilty” or “innocent” upon them (e.g., as in “innocent” children and hemophiliacs, implying all others are “guilty”). Researchers “investigate” the “baffling” disease, searching for “clues” to solve the “mystery” in need of “unraveling” (Ross, 1988). Evident throughout already mentioned metaphors is the concept of AIDS as “otherness” or “civic divisiveness” (Ross, 1988). Enemies and criminals are viewed as “them” in an us-them distinction. Unsafe behaviors are cast as “deviant,” further reinforcing division. Terms like the general population and risk groups imply not just difference but deficiency. The otherness metaphor “permits people to accept lesser treatment for those who belong to that other group than they would demand for themselves” (Ross, 1988, p. 46). In summary, the metaphors of AIDS tend to cast people with HIV disease as the enemy, pollutants, sinners, criminals, and the socially and morally distanced “them.” These metaphors abound in the everyday language of the public at large, health care professionals, and public figures, with significant implications for everyday interaction. How the Meanings of HIV/AIDS “Direct” Behavior, Influence, and Are Influenced by Everyday Interaction

A major premise of the present analysis is that human beings act in accordance with meanings associated with message-affiliated behaviors and anticipated interpretations of those actions by others. Thus, understanding the array of meanings associated with HIV risk taking is necessary to predicting and influencing those behaviors. The Tapestry of Meanings of HIV-Risk-Taking Behaviors

Meanings associated with HIV risk behavior are embedded in a larger array of meanings associated with sexuality and drug use. As Friedman and Des Jarlais (1991) pointed out, these interactions are a result of a lifelong series of social relationships. The messages and meanings of behaviors in those relationships hold clues for why risks are taken and prevention avoided. The Meanings of Unsafe Sex. Public health officials tend to see sexuality in terms of its health-risk meanings. The term unsafe sex, as used here to refer to sex without a condom, mirrors that perspective. However, from the participants’ perspective, “unsafe sex” is replete with identity and relational meanings. 1. Identity meanings. Sexual choices, including unsafe sex, function to define the self (Netting, 1992). Among the identity-related meanings associated with unsafe sex are: (1) a dialectic of invincibility (e.g. Sobo, 1993) and fatalism (Sherman & Kirton, 1999); (2) judgments of healthiness (Sherman & Kirton, 1999) or unhealthiness (Sobo, 1993); (3) trustworthiness of character or respectability (e.g., Boulton, McLean, Fitzpatrick, & Hart, 1995); (4) wisdom or knowledgeability (i.e., can judge another’s character accurately, are “careful,” or can “tell by looking”) (e.g., Cline & Freeman, 1988); and (5) judgments of gender appropriateness (e.g., Brown, Lourie, Flanagan,

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& High, 1998; Sherman & Kirton, 1999). Engaging in unsafe sex also is associated with being “out of control” due to “the heat of the moment,” alcohol, drugs, or grief (e.g., Ross, 1992; Williams, Kimble, Covell, & Weiss, 1992). This attribution functions to buffer identity by absolving the actor of responsibility for behavior. 2. Relational meanings. Sexuality invokes relational meanings both in terms of affiliation and control, corresponding with Henley’s (1977) horizontal and vertical dimensions of relationships. Affiliative meanings commonly associated with sexual intercourse in Western culture include connectedness, emotional involvement, commitment, love, caring, romance, intimacy, and trust. Women, more than men, associate these meanings with intercourse, engaging in sex as a larger process of seeking love and commitment (see, e.g., Rosenthal, Gifford, & Moore, 1998; Tavis & Semin, 1997). Having unsafe sex is seen as a greater expression of affection, companionship, romance, love, caring, and intimacy than using a condom and indicates loyalty, honesty, and trust (e.g., Boulton et al., 1995; Rosenthal et al., 1998). People disenfranchised by sexual orientation or poverty may be willing to have unsafe sex as a means of relational contact (e.g., Sherman & Kirton, 1999). Having unsafe sex may signify acceptance devoid of their stigma for people who are HIV infected (e.g., “She loves me so much she is willing to take the risk”) (Sherman & Kirton, 1999, p. 87). “ ‘Having a relationship’ is protection” emerges as a theme in research. For both gay men (Boulton et al., 1995) and heterosexual couples (Sobo, 1993), having unsafe sex “proves” that a relationship is committed, strong, and healthy rather than casual. Engaging in sex also can be understood in terms of relational control, a perspective more characteristic of men than women. Concepts associated with sex as relational control include sex as a hunt, ensnaring, rescue, seduction, competition, power, conquest, and exploitation (see, e.g., Bowen & Michal-Johnson, 1995). In this frame, having sex amounts to exerting one’s will with a partner’s submissiveness. Concepts of giving, yielding, submitting, doing one’s “duty,” or filling marital or legal obligations also characterize relational control meanings. These relational meanings provide the backdrop for understanding risky sexual behavior. Having unsafe sex when a partner would prefer to use a condom signifies control. In the typical scenario among heterosexuals, the woman wants to use a condom and the man resists (Sobo, 1993). The man who insists on or physically forces unsafe sex not only dominates his partner, he also reinforces his identity as masculine and in control. Women’s claims to engage in unsafe sex by mutual consent may shroud the reality of their submission; these accounts, often after a woman planned to use a condom, permit denial of relational powerlessness and dependence (Sobo, 1993).

In summary, identity and relational meanings can largely account for decisions not to use a condom. These meanings also help to explain HIV-risk-taking behavior other contexts. The Meanings of Prostitution. As a matter of public health, prostitution is replete with meanings of risk. However, participants’ meanings are symbolic worlds away. For sex workers, intercourse represents a business transaction (Mays & Cochran, 1988). Sex represents money and unsafe sex may represent more money when preferred by clients (Browne & Minichiello, 1995). For a client, having sex with a prostitute may mean easy access, lack of emotional involvement, and company, fun, or variety (Chetwynd & Plumridge, 1994). Despite the socially constructed association of AIDS with prostitution, in the United States prostitutes are likely to use condoms with their clients (e.g., Cusick, 1998). Unsafe sex with clients is associated with urgency to earn money and loss of relational control (i.e., powerlessness due to drug or alcohol use, or violence from customers) (Cusick, 1998).

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Generally, identity threats associated with condom use are irrelevant in sex for pay as the sex has little personal meaning (Browne & Minichiello, 1995). From the perspective of the sex worker, sex with clients is “a job” (e.g., Perkins, Lovejoy, Dean, & Wade, 1991), “not real sex” (Browne & Minichiello, 1995, p. 619); condoms function as occupational safety. Using condoms reinforces this frame by emphasizing limited self-sharing in the transaction. Accounts of both male and female sex workers portray the meanings of unsafe sex dramatically differently depending on the meaning of the encounter; although condom use is mandated for work, it is not expected in personal relationships (e.g., Browne & Minichiello, 1995) where engaging in unsafe sex signifies familiarity and trust (e.g., Cusick, 1998). In summary, the meanings of behavior in sex work can be explained better in terms of identity and relational meanings than risk. Prostitutes tend to use condoms when engaging in what they construe as “not real sex,” and not to use them for “real sex,” where they see themselves as “protected by relationships.” The Meanings of IV Drug Use and Sharing Works. In terms of public health, sharing needles for IV drug use represents a major risk for HIV infection. But IV drug users are unlikely to associate sharing works with risk because of an overwhelmingly risky lifestyle, including everyday risks of arrest, failure to locate drugs, failure to locate funds to buy drugs, violence, and risks associated with taking drugs (McKaganey, Friedman, & Mesquita, 1998). The “added risk” of sharing works may go unnoticed. Relational meanings tend to dominate drug use. Drug use symbolizes an array of positive interpersonal phenomena including the romantic initiation, social bonding, and shared instrumental goals. Thus, attempts to reduce sharing works likely encounter “strong opposition from partners who feel their strongest friendships are under attack” (Friedman, Des Jarlais, & Sotheran, 1986, p. 385). Initiating someone into IV drug use is called “giving them their wings,” (Des Jarlais, Friedman, & Strug, 1986, p. 114) and is associated with peer acceptance and risk; sharing needles in that initiation reinforces one’s identity as a peer (Des Jarlais et al., 1986). The greatest factor influencing sharing of injecting equipment is availability of sterile equipment (McKaganey et al., 1998). In the absence of access to clean works, sharing takes on social meanings, including giving and reciprocity (McKaganey et al., 1998). Research shows that 70% of injectors shared needles with a spouse or sexual partner, a running partner, or with friends and acquaintances (Neaigus et al., 1994). Those relationships are long-standing and complex, often based on kinship, friendship, marriage, sexual ties, and economic activity. Sharing injecting equipment may occur in a larger context of sharing housing, tasks, money, food, and needs for human contact. In this context, sharing works serves as a symbolic bond (Grund, Stern, Kaplan, Adriaans, & Drucker, 1992). Drug users cooperate to meet instrumental goals. “Running partners” or “shooting buddies” function as teams to “hustle” money to buy drugs (Des Jarlais et al., 1986, p. 115). When partners are both men, they likely have had sexual relationships with the same women; when the partners are a man and woman, they likely have a sexual relationship (Des Jarlais et al., 1986). Common activities and synchrony of emotional experiences (highs, withdrawal) bond the parties. Thus, the running partner can be characterized as “the strongest positive relationship” in the IV drug subculture (Des Jarlais et al., 1986, p. 116). Running partners often share works, symbolizing “a close, caring, ‘family’ relationship” (Des Jarlais et al., 1986, p. 120). Thus, refusing to share works not only jeopardizes the

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interpersonal relationship, but also casts doubt on the partner’s character by implying that he or she might be diseased. Meanings of drug use and sexual behavior tend to differ by gender. Women are more likely to have sexual partners who also are IV drug users (Des Jarlais, Chamberland, Yancovitz, Weinberg, & Friedman, 1984). The “shooting partner” may represent her most significant relationship as he also is likely to be her sexual partner (Des Jarlais, Friedman, Casrield, & Kott, 1987). Many women fail to negotiate “safe drug use” for the same reasons they fail to negotiate condom use: identity and relational risks (Williams, 1991). The most common reason for women sharing works is relational affiliation (Dwyer et al., 1994); sharing also may be governed by relational control (Brimlow & Ross, 1998). Drug-using women are more likely than men to be married, dependent on others, and have dependent children (Griffin, Weiss, Mirin, & Lange, 1989). Relational ties often influence their drug-related behavior. When men and women share needles, the man tends to inject first as a matter of social status, thereby placing the woman at elevated risk for viral infection (e.g., Freeman, Rodriguez, & French, 1994). Further, women who attempt to negotiate safe behavior with drug and sexual partners face both relational and physical jeopardy (e.g., Brimlow & Ross, 1998). Williams (1990) found that many female IV drug users or sexual partners of IV drug users are deeply involved with their children. Part of being “a good mother” is avoiding drugs during pregnancy. In effect, identity and relational meanings drive some of these women to stop using drugs during pregnancy, including long-term heroin addicts (Williams, 1990). Clearly, interpersonal relationships play a significant role in drug-use behaviors. Understanding the social context, social norms, and meanings associated with drug practice can inform HIV prevention efforts (Neaigus et al., 1994). The Tapestry of Meanings of HIV Prevention

Although the federal government was slow to respond to the AIDS epidemic, when it acted, a set of prevention messages was disseminated widely. Five years into the epidemic, the U.S. Surgeon General (1986) released a 35-page report that served as the primary source for AIDS prevention messages. Two primary messages advised the public about interpersonal communication for the purpose of AIDS prevention. Stated in ambiguous terms (“know with absolute certainty, that neither you nor your sexual partner is carrying the virus of AIDS,” or “you must use protective behavior,” p. 16), they were disseminated as: “know your partner” and “negotiate safe sex.” Both messages are problematic in interpretation and practice. “Know Your Partner” as Prevention Advice: The Meanings and Practice of “Safe-Sex Talk”. The message to “know your partner” was translated to mean that sexual partners should talk openly for the purposes of AIDS prevention. Partners should disclose their sexual histories and past risk behaviors as well as discuss certain intimate topics (monogamy and condom use). Substantial evidence supports wide dissemination and practice of the advice (e.g., Cline, Johnson, & Freeman, 1992; Misovich, Fisher, & Fisher, 1996). Typically, women, more often than men, report such talk (e.g., Cline & McKenzie, 1994). Unfortunately, both the logic and interpretation of the advice to talk to a partner as a means of risk reduction can be indicted. The advice to “talk-as-prevention” can be critiqued

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as follows: no amount of talk, unless it leads to condom use, constitutes efficacious HIV risk reduction. Not simply inefficacious, the advice is potentially dangerous. 1. Difficulty of implementation. Talking with a partner for the purpose of AIDS prevention poses several challenges: (1) high level of communication skills required to simultaneously manage health, identity, and relational goals; (2) violating relational norms by discussing taboo topics (Baxter & Wilmot, 1985); (3) managing competing frames of discourse (romantic versus clinical, trust versus distrust); (4) managing identity goals while implicitly questioning a partner’s character; and (5) not knowing a partner well enough to engage in intimate talk (Cline, et al., 1992). 2. The logic of talk as risk assessment. A second criticism involves the efficacy of talk as prevention. The advice to “know your partner” fosters belief in the efficacy of personal judgment as a basis for risk assessment. Few people perceive that they “do not know” their partners; “knowing” may mean identifying by name, being acquainted, or having made judgments based on superficial information. Those who attempt talk for risk assessment will be stymied by two factors: (1) a partner cannot know reliably the risk behaviors of his or her previous partners or the partners of those partners (i.e., the sexual family tree), and (2) the potential for partner deception (e.g., Mays & Cochran, 1993). 3. Competing goals: Managing images and relationships. To the extent that “talk” leads to condom use, talk is a worthwhile prevention effort. However, talking in order to use condoms is relatively unlikely as that advice simultaneously jeopardizes identity and relational goals. The most dominant reasons for “not talking” to a partner about AIDS, even though desiring to do so, reflect struggles with relational and identity management (Cline et al., 1992). Practicing the advice may jeopardize partners’ identity management and/or identity management may jeopardize prevention. Individuals likely see themselves as wise or credit themselves with being “careful” or “selective.” Following this logic, partners may substitute personal perceptions for talk, or if talk occurs, substitute conversation for condom use. A potential sexual partner may reason, “If he talks about intimate topics, he must be honest;” that “honesty” can be extended to additional character judgments, including low disease risk, and obviate the need for condoms. In either case, no efficacious risk reduction occurs. At worst, the advice is dangerous when it becomes a substitute for condom use. Meanings associated with AIDS-prevention talk may jeopardize the relationship or relational meanings may jeopardize talk. A desire to talk suggests lack of trust; in turn, partners may reason, “If I trust you, I don’t have to ask.” Ironically, the perception of having a “trusting relationship” may be construed as evidence of “safety” and preclude engaging in safe-sex talk. 4. “Know your partner” research. Numerous findings argue that attempts to practice the “know your partner” advice are associated with increased reliance on personal judgment and decreased probability of condom use, and, thus, ultimately with greater risk. Evidence of assessing risk intuitively, by appearance and conversation, includes: avoiding condom use because one “just knows” the partner was safe (e.g., Williams et al., 1992); relying on judgments of risk for protection (e.g., Carter, McNair, Corbin, & Williams, 1999); getting to “know” someone and judging risk by observing personal habits, social circles, and attire (e.g., Estrada & Quintero, 1999); liking (e.g., Williams et al., 1992); perceived monogamy (e.g., Prince & Bernard, 1998) and perceptions of being in a relationship (e.g., Hennessy, Manteuffel, Dilorio, & Adame, 1997); invoking trust (e.g.,Williams et al., 1992); being “selective” (e.g., Hawkins, Gray, & Hawkins, 1995); and relying on sexual history taking (e.g., el-Bassel & Schilling, 1991). Evidence indicates that conversation specifically about condoms increases the probability of their use in limited circumstances, particularly via “bullying” strategies (Margillo & Imahori, 1998), in uncommitted relationships (e.g., Edgar, Freimuth, Hammond, McDonald, & Fink, 1992), and for contraceptive purposes (e.g., Koch, Palmer, Vicary, & Wood, 1999).

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In summary, by advocating conversation as prevention, the advice to “know your partner” reinforces the view that being in a relationship is protective. The end result is that the advice likely has done more harm than good. Negotiating Condom Use. The second interpersonal message was to “negotiate safe sex” or “negotiate condom use.” A wealth of evidence suggests limited practice in most populations, with identity and relational meanings as major prohibiting factors. 1. Evidence regarding condom use. Although people are knowledgeable about condoms’ efficacy, most do not use condoms, nor are informational interventions effective in increasing condom use (e.g., Lewis, Malow, & Ireland, 1997). Exceptions include sex workers with their clients, gay men (Boulton et al., 1995), and serodiscordant couples (Kennedy et al., 1993). Condom use is low among adolescents and use declines with age (e.g., Romer, Black, Ricardo, & Feigelman, 1994). Condom use is low among college students; typically about 20% report always using condoms (e.g., Oswalt & Matsen, 1993) despite most having multiple partners (DiClemente, Forrest, & Mickler, 1990). Condom use is low among heterosexual adults regardless of gender and ethnicity; rates of never using condoms typically exceed those of college students (e.g., Maxwell, Bastani, & Warda, 1999). Further, studies of varied populations show that as numbers of partners increase, condom use decreases (e.g., Oswalt & Matsen, 1993). 2. Meanings associated with condoms. Because condom use occurs in dyadic contexts, behavior is fraught with identity and relational meanings. Substantial evidence indicates that condoms are condemned and avoided by both men and women for psycho-physical reasons (issues of pleasure, spontaneity and comfort) (e.g., Ross, 1992). However, identity and relational reasons may be even stronger deterrents. 3. Risks to identity. Meanings commonly associated with condoms pose threats to identity. Jeopardy is attached to procuring, carrying, and using condoms. Both young males and females are embarrassed by buying condoms (e.g., Taylor, 1995). Women report greater embarrassment than men in buying (e.g., Cline & McKenzie, 1994) and carrying condoms (e.g., Lear, 1995), although often men are more embarrassed to use them (Cline & McKenzie, 1994). Suggesting using a condom may jeopardize one’s character. A person may fear being seen as having poor judgment, being unwise, careless, diseased (Sobo, 1993), sexually active (Hillier, Harrison, & Warr, 1998), or promiscuous (e.g., Rosenthal et al., 1998); or having cheated (Hetherington, Harris, Bausell, Kananagh, & Scott, 1996). The suggester may fear being viewed as untrustworthy or unfaithful (e.g., Sobo, 1993) or being labeled homosexual or bisexual, a drug user, or a prostitute (e.g., Worth, 1989). These meanings are enough to motivate condom avoidance. Gender norms pose a double standard in which being sexual is positive for men and negative for women. To buy, carry, or suggest using condoms may challenge a woman’s reputation or denote lack of sexual innocence (Lear, 1995), mark her as planning to have sex (Hillier et al., 1998), result in stigma associated with casual sex, promiscuity, and infidelity (Price, 1997); and jeopardize cultural (Marin & Marin, 1992) as well as gender identity (Brown et al., 1998; Flores-Ortiz, 1994). For women, using condoms may negate the association of sex with procreation and motherhood (e.g., Pivnick, 1993). Similarly, for some men, the potential to procreate is a part of their masculine identity or machismo (e.g., Price, 1997). Yielding to a woman who suggests using a condom may threaten one’s manhood (Abdool Karim, Abdool Karim, Preston-Whyte, & Sankar, 1992) or image of unquestioned authority (Miles, 1997). Proposing condom use may threaten a partner’s character (Brown et al., 1998) by calling into question the partner’s honesty (Sobo, 1993), fidelity, trustworthiness (Hetherington et al., 1996), faithfulness (e.g., Abdool Karim et al., 1992), and respectability (Raffaelli & Suarez-Al-Adam, 1998), or by implying the partner is a high STD risk (e.g., Ross, 1992).

14. EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH 299 The power of identity meanings in the context of relating is clear: Many people fear risk of rejection more than they fear STDs (Pliskin, 1997). Because relational meanings are so closely associated with identity meanings, they too often result in condom avoidance. 4. Relational meanings of condoms. Meanings commonly associated with condoms pose significant relational threats. As Adelman (1992) pointed out, condoms evoke images and contexts that defy relational well-being. Condoms represent a kind of relational barometer: Using a condom becomes a “tangible signifier of levels of intimacy, trust, and developmental stage of a relationship” (Estrada & Quintero, 1999, pp. 142–143). Using a condom signifies relational distance, questionable trust, limited commitment, and/or an early stage of relationship. Condoms often are associated with one-night stands, casual sex, and “illicit sexual relationships” (Raffaelli & Suarez-Al-Adam, 1998, p. 17), and with lack of relational involvement (Sheeran, Abraham, & Orbell, 1999) and commitment (e.g., Afifi, 1999). They are relatively more likely to be used as contraception among the young (Romer et al., 1994), in new relationships or early in relationships (Moore, Harrison, Kay, Deren, & Doll, 1995), in short-term relationships (Jadack, Hyde, & Keller, 1995), in fluid rather than in exclusive relationships (St. Lawrence et al., 1998), in steady rather than casual relationships (Magura, Shapiro, & Kang, 1994), with lovers rather than husbands (Pivnick, 1993), among single than married couples (Willig, 1994), for one-night stands (Williams et al., 1992), and for sporadic sexual encounters (Taylor, 1995). Condom use also is associated with the absence of trust and intimacy (e.g., Hammer, Fisher, Fitzgerald, & Fisher, 1996). Because condoms symbolize extrarelational activity, partners may avoid their use in order to sustain positive relational values (Worth, 1989). In short, condoms are equated with lack of relational connectedness. Condoms also are associated with relational control. Beyond losing prized relational values (e.g., commitment, intimacy, and trust), women may fear relational control costs (e.g., anger, hostility, loss of relationship) (e.g., Raffaelli & Suarez-Al-Adam, 1998). Women often cite their partners’ dislike of condoms to justify not using them (e.g., Libbus, 1995). Women who have been beaten or sexually abused simply are not in a position to request condom use; doing so may incur physical violence (e.g., Kalichman, Williams, Cherry, Belcher, & Nachimson, 1998). Given that men tend to be more negative about condoms’ meanings than women (e.g., Cline & McKenzie, 1994) and in greater control, condom use is improbable among unequal partners (Lear, 1995). Many women at highest risk have little or no bargaining power, as they rely on partners for money, drugs, food, and/or housing (Hetherington et al., 1996). Women may be more likely to perceive risk and desire to use condoms, but men are likely to hold greater relational control. In this case, condom use requires the submission of the man to a woman’s request (Sobo, 1993).

In summary, the meanings and practice of the “negotiate safe sex” or “negotiate condom use” advice are daunting. Condoms, associated with safety from a public health perspective, have become equated with risks to identities and relationships in the minds of participants. The Meanings of an HIV Test. From a public health perspective, the meanings of HIV testing are associated with assessing risk and HIV prevention; this perspective assumes that the person being tested wants to know his or her results. Obviously, many people are HIV tested because they believe they may be at risk of infection. Most people in Beevor and Catalan’s (1993) study who tested positive already had symptoms and had been advised to have the test as part of their treatment. Thus, many are tested for risk or overt medical reasons. However, people often are HIV tested for interpersonal rather than health or risk-related reasons.

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Due to relational meanings, pregnant women, especially if at high risk to infection (e.g., IV drugs users or partners of users), may be reluctant to be tested. Although they may believe they should be tested for the sake of their unborn children, equating a positive test with death may deter them (Williams, 1990). Either way, these women face challenges to achieving relational goals regarding their children. Mandatory testing of newborns essentially amounts to mothers being tested without their consent (Fleischman, Post, & Dubler, 1994). They may experience tension between two relational goals: the desire to protect their babies and the desire to retain their roles as mothers. Women who know they may test positive are likely to accurately anticipate disclosure of their status and predict stigmatizing consequences that will jeopardize social support for themselves and for their newborns (Berger, Rosner, & Farnsworth, 1996). After giving birth, many women fail to return for test results for fear of losing custody of their child for being an unfit mother if they tested positive (Berger et al., 1996). (See Cline & McKenzie, 2000a, regarding issues of mandatory testing and related disclosure.) Numerous relational risks are associated with proposing an HIV test to a partner (Hammer et al., 1996). Having the test often is more acceptable than condom use as it can be justified as a “standard medical procedure” (Sobo, 1993, p. 475). But suggesting the test may raise questions about trust and commitment, resulting in avoidance of the issue in order to avoid making a partner suspicious or feel mistrusted. In contrast, some may fear that suggesting having an HIV test signifies “too serious a relationship” (Hammer et al., 1996, p. 390), one more involved than that to which they are committed. In line with this reasoning, some people believe that having an HIV test will make the relationship closer, more secure, comfortable, and intimate. A final relational reason for avoiding the test is fear that a positive test will end the relationship; the potential loss of the relationship may be more frightening than the prospect of unknowingly being involved with an infected partner. Testing may be used to check on a partner (Sobo, 1993) or as a negotiation “chip” in a new relationship. Some people are pressured by others to have the HIV test; still others have the test to bring symbolic closure to a terminated relationship (Lupton, McCarthy, & Chapman, 1995). For some, getting tested is part of “a routinized script” in the early development of a relationship (Estrada & Quintero, 1999), a part of getting acquainted. Others use the test as a relational litmus test, providing evidence of the seriousness of the relationship (Lupton et al., 1995). A negative test result often is used to justify not using condoms (Lupton et al., 1995). Most people driven by these relational meanings assume that they will test negative. As a result, they may not return for test results and tend not to seek follow-up tests despite engaging in recent risky behavior (Lupton et al., 1995). Thus, from the participants’ perspective, an HIV test may have little to do with diagnosis, but rather is “magically viewed as a preventive measure” in itself (Lupton et al., 1995, p. 177) as it provides evidence of relational commitment and character. Little is known about the process of health care providers disclosing a positive HIV test result to clients (Jackson & Selby, 1998). Many receive little or no emotional or educational support at the time of diagnosis (Farber et al., 1996). The diagnosed person’s longer term adjustment is dependent on the immediate attention of the health care professional to facilitate addressing identity and relational as well as health concerns. Managing the Meanings of Having the Disease

Receiving a positive HIV test result forever changes how one manages life. The infected person is assaulted by shock, uncertainty, and the anticipation of loss. Many people equate

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AIDS, and thus a positive HIV test result, with death (e.g., Williams, 1990). The initial reaction to an HIV diagnosis tends to be shock (Metcalfe, Langstaff, Evans, Paterson, & Reid, 1998). The newly diagnosed resonate with fear and an overwhelming sense of uncertainty (Metcalfe et al., 1998) as they face numerous threats of loss enhanced further by the dilemma of disclosure. The Dilemma of Disclosure. HIV disclosure decisions pose a major dilemma (Sowell et al., 1997) and source of recurring stress (Holt et al., 1998). The dilemma emerges immediately upon diagnosis, when people tend to maintain silence. The stressor recurs as the need for social support emerges both in coping with the meanings and emotional turmoil of diagnosis and as the disease progresses and the need for instrumental support grows. The major source of stress lies in uncertainty regarding how others will respond to the disclosure. People with HIV disease face the choice of risking stigma or denying themselves opportunities for social support (e.g., Simoni, Mason, & Marks, 1997), as the prospects for others’ reactions range from wholehearted and unconditional love, acceptance, and support to rejection, condemnation, ostracism, abandonment, or violence. The end result of an HIV diagnosis is enhanced need for social support at the very time that access to that social support is likely jeopardized by disclosing the very reason for its need. (See analyses of the relationship between stigma and social support by Cline, 1989; Cline & McKenzie, 1996a, 1996b, 2000b.) As a result, people with HIV disease face uncertainty about to whom and under what conditions to make disclosures (Brashers et al., 2000). The Threats of Disclosure. Disclosure of this single piece of information can result in threats to physical well-being, identities, and relationships. 1. Threats to lifestyle and well-being. Disclosure of HIV disease endangers physical wellbeing. What many take for granted, such as spousal and family support, and everyday protection by law against discrimination, employment, housing, education, insurance, and access to health care, may be jeopardized (Moneyham et al., 1996). Ironically, the need to engage in disclosure often keeps HIV-infected people away from the services they most need. Although the threat of violence for HIV-infected women appears greater than for HIV-infected men, both may be at enhanced risk upon disclosure. Research from a probability sample indicates that 20.5% of women, 11.5% of men who reported having sex with men, and 7.5% of heterosexual men reported experiencing physical harm since their HIV diagnosis (Zierler et al., 2000); nearly half reported that their HIV status triggered the violence. Women in abusive relationships are at increased risk to violence (Gielen, O’Campo, Faden, & Eke, 1997). The probability of violent responses likely is underestimated given evidence that many women fail to make disclosures to their partners because they fear a violent response (Heyward et al., 1993). Women who are at high risk for HIV infection often are at high risk for violence. As many as two-thirds of HIV-infected women fear violence as they face the prospect of disclosing their disease (Gielen et al., 1997); one-quarter report already having experienced abandonment, verbal abuse, or physical assault as consequences of their disclosure. Beyond loss of physical health and years of productive life, people who test positive are likely to anticipate immediate and longer term identity and relational losses. 2. Threats to identity. Being stigmatized or rejected is prima facie evidence of failure to achieve identity management goals. The implications of AIDS can be summarized in one word: stigma (Goffman, 1963). The impact of stigma associated with AIDS is multiplied by its associations with an array of stigmatizing features including terminal illness, IV drug use, promiscuity, prostitution, and disenfranchised populations (Cline & McKenzie, 1996a).

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HIV represents a massive attack on one’s identity, both internally and externally. As Jackson and Selby (1998) pointed out, the diagnosis can pose immediate damage to the self-concept. Psychological consequences of an HIV positive test include self-rejection and enhanced risks to mental health (e.g., anxiety, depression, and suicide) (Crandall & Coleman, 1992). Among the identity meanings are losses of health and a positive body image as well as facing one’s own mortality. Often a woman diagnosed with HIV becomes angry with herself. The positive test reflects on her character, signifying a lack of wisdom and judgment. People with HIV disease are blamed for their behavior, judged to have character flaws, and represent a most undesirable form of death (Cline & McKenzie, 2000b). HIV, more obvious than other stigmatizing conditions, becomes the “master status” of the infected; a person’s identity becomes equated with his or her infection (Bennett, 1990). The potential identity consequences of an HIV disclosure include shame, disapproval, and becoming identified as a chronically ill person (Katz, 1997). Among women, shame may be relative to the inability to have children or to care for one’s family; among men, shame may emanate from a sense of blame for leaving the family with insufficient resources. An AIDS disclosure may result in personal rejection or condemnation by the very people most might assume would be supportive. Maintaining secrecy often is directed toward protecting others as well as self. When a child has HIV-infection, often secrecy is maintained both within the family (i.e., not disclosing to siblings) and outside the family (e.g., not disclosing to school representatives) (Fanos & Wiener, 1994). These decisions are designed to protect the family’s singular and collective identities. Similarly, Latino men report not disclosing their HIV status to their parents, attempting to avoid both worry and their rejection by others (Mason, Marks, Simoni, Ruiz, & Richardson, 1995). 3. Threats to relationships. Relational implications of an HIV diagnosis surface quickly. As an interpersonal syndrome, people with HIV disease commonly experience relational rejection, betrayal, abandonment, and, at best, uncomfortable interaction. Often women’s initial reactions abound with relational meanings. Some fear having infected a partner; others experience the diagnosis as betrayal or broken trust (Sobo, 1993). For many women, the meanings of the diagnosis center on childbearing and childrearing (Cohen, Hauer, & Wofsy, 1989) as they face choices regarding abortion, postponing childbearing, and planning for their children’s care as they anticipate their own illness and death (Metcalfe et al., 1998). In some cases, the relational losses of HIV disease seem to outweigh the physical losses. Social uncertainties include fear of rejection by family, friends, lovers, and spouses (Lang, 1990), as well as abandonment, hostility, and outright violence (Alonzo & Reynolds, 1995). Relational reasons may drive disclosure decisions. Some HIV disclosures are made in anticipation of gaining social support (Stein et al., 1998); others originate out of caring and concern for a lover’s health (Simoni et al., 1995). Some evidence indicates that people with HIV disease anticipate more negative relational responses to their disclosures than they actually receive (Mansergh, Marks, & Simoni, 1995; Simoni et al., 1997). In fact, most people receive supportive responses (e.g., Holt et al., 1998; Katz, 1997). Despite encouraging evidence regarding supportive responses, the rejection that does occur tends to be devastating and often at the hands of people expected to be supportive. Further, those who fail to disclose may assess their situations accurately; they may be more likely to encounter negative relational consequences than those who took the risk of disclosure (Mansergh et al., 1995). Common responses go beyond anger; 10.4% of Mansergh et al.’s (1995) respondents reported that their lovers left them upon hearing their HIV disclosure. For many gay men, disclosures of sexual orientation and HIV status occur simultaneously (Kadushin, 1996); in effect, they are “outed” by their HIV disclosure (Holt et al., 1998). Families may reject a member’s homosexuality, reject the person, and be fearful of being stigmatized themselves. Even when family members are supportive, the discloser has to worry about trusting others to

14. EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH 303 maintain confidentiality (Holt et al., 1998; Moneyham et al., 1996). Several studies show that gay men are less likely to disclose to family members than to gay partners and friends due to fear of rejection (e.g., Mansergh et al., 1995); disclosure to fathers was particularly low. African American women also report painful disclosure experiences with families and partners. These include being shunned by their mothers, being isolated, and being given separate dishes from which to eat (Bedimo, Bennett, Kissinger, & Clark, 1998). One woman’s partner began calling her “the death angel” (Bedimo et al., 1998, p. 52); numerous accounts include partner abandonment or partners turning on them in disbelief, even when the partners were the source of infection. Not coincidentally, the risks associated with disclosing HIV status reflect the same frames of meaning that drive HIV risk and prevention behavior: threats to physical and functional well-being, identities, and relationships.

Summary: Interpersonal Messages and Meanings Frame Behavior

Patterns of interpersonal communication in the HIV/AIDS epidemic support three primary conclusions. First, everyday interpersonal interaction constructs a framework of meaning that functions to direct behavior with regard to AIDS. The language, labels, and metaphors about AIDS create meanings that reflect and predict interpersonal behavior across many contexts. A reality built on themes of stigmatizing identities and divisiveness in relationships yields social norms that guide behavior regarding risk taking, prevention, and responses to people with HIV/AIDS; predictably, these behaviors are designed more to avoid character judgments and relational discord than to promote health and supportiveness. Second, across populations and contexts, across behaviors associated with risk, prevention, and responses to people with HIV disease, the primary frameworks of meaning driving participants’ behaviors are social rather than health related. Actions tend to be framed by meanings associated more with identity and relational management than with health issues. Whatever actions are taken, whether in response to others, in taking risks, in understanding prevention messages, or in managing one’s own illness, occur with consistent sensitivity to maintaining positive impressions among peers and partners and positive relationships with significant others. Logically, intervention efforts must be framed in terms of the participants’ social objectives rather than solely in terms of health objectives or likely they will fail; worse, they may encourage enhanced risk taking. In the case of AIDS, most risky behavior and, thus, most of the desired behavior changes, occur in interpersonal contexts; not only are partners (drug and sexual) likely to influence behavior, but often their cooperation and participation are necessary to enact prevention behavior as well. Risk, prevention, and supportive responses occur in dyadic or group contexts; interpersonal transactions rather than personal behavior become the unit of analysis and the point of intervention. Interventions must account for the transactional nature of the context; unless interventions permit interactants to meet their immediate and longer term interpersonal goals, they are likely to fail. Worse, ignoring the interpersonal context in which risk taking occurs yields ineffective and potentially dangerous prevention messages. EVERYDAY INTERPERSONAL COMMUNICATION AND HEALTH: DIRECTIONS FOR FUTURE RESEARCH AND PRACTICE

The present review of everyday interpersonal communication and health makes several arguments regarding future research and practice. First, more systematic and theoretically driven research is needed. The present review provides glimpses of the varied and significant roles interpersonal communication plays

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every day in health-related outcomes; the case of AIDS illustrates the pervasiveness of those roles across populations and contexts. As a field, we need to attend to the sometimes more difficult-to-capture factors that influence health. We have long known and accepted, in the realm of public health communication campaigns, that interpersonal communication tends to precede behavior change. We have long understood the significance of interpersonal communication in health care transactions for outcomes (e.g., satisfaction, compliance, probability of malpractice suits, and significant medical outcomes). But as a field, we have little attended to the particular dynamics of that interpersonal communication and have little attempted to understand the role of everyday interpersonal communication as it influences health and risk behavior. By focusing on messages and meanings from the perspectives of those engaged in symbolic behavior, social influence offers one theoretical framework around which to conduct research. Second, as researchers in the arena of health, we tend to look at our research topics and questions in a way that overattends to frames of meaning invoked from a public health perspective. That is, we overemphasize the significance of explicit health information and themes of risk in understanding health communication problems. Ironically, as communication scholars, one of the first lessons we likely learned as part of our training was the value of “audience analysis.” That lesson often is set aside in health communication research and practice. Instead of attempting to understand messages and meanings from the perspectives of those participating in health-significant interpersonal transactions, we tend to impose frames of meaning that drive public health policy, interventions, and sources of research funding. That is, we tend to frame not only our research questions from the vantage point of instrumental goals and health as communication content, but also our methods and interpretations of results. In so doing, we enter a different sphere of reality and speak a different language than the individuals we hope to influence. As a result, the messages and meanings likely to be most influential in affecting health-related behavior often are ignored. The present review calls for researchers to understand health and risk behaviors in terms of the frames of meaning used in the interpersonal contexts in which the behavior occurs. More specifically, we can begin this shift in perspective by investigating the identity and relational meanings associated with health and risk behaviors. In turn, we can build interventions on these messages and meanings. Third, in terms of both research and practice, the implications of understanding the social realities, social norms, messages, and meanings from participants’ points of view go beyond effectiveness to issues of ethics. Like health care professionals, health communication specialists ought to adhere to the principles of medical ethics, beginning with “first do no harm.” The principle of nonmaleficence (Beauchamp & Childress, 1989) is not simply the inverse of the principle of beneficence. In the name of “doing good,” that is, acting with moral certitude, many in the fields of medicine, public health, and health communication risk doing harm. When public health officials design and disseminate messages for the public with more consideration of their political and moral acceptability than how those messages will be interpreted and practiced within the social realities in which various targeted publics live, they risk doing more harm than good. In the case of AIDS, the failure to attend to participants’ meanings for the message “know your partner” yielded danger. Messages that framed condoms in positive terms (rather than avoiding the word, and worse, explicitly arguing their inefficacy) and talk, only to the extent that it related to condom use, would have been clearer, more internally consistent, and potentially more effective. Instead, the widely disseminated messages appear to have done substantial harm. In a very real sense, as we begin the third decade of the epidemic, the solution (many widely disseminated prevention messages) has become the problem (Watzlawick &

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Weakland, 1974). Public health efforts to invoke change essentially often have promoted “more of the same” risky behaviors promoters intended to prevent. Finally, implicit in the present review is a plea to pursue an understanding of the significant role that social norms play in behavior; social realities establish the “oughtness” of behavior and interpretations of behavior. As argued here, health communication researchers need to understand the implications of the sources of social norms, their role in interpersonal contexts, and their implications for producing effective behavior change messages. At the same time, planned change messages are only a very small part of the mountain of everyday messages that influence various publics’ social norms. The interrelationships between interpersonal and public influences on social norms need to be better understood. Public health officials, educators, religious leaders, community leaders, practitioners, politicians, news representatives, producers of popular culture, and institutional representatives need to understand that their messages also play a key role in establishing and maintaining social norms. Often their messages work against efficacious prevention. For example, continuing vociferous public debate regarding shown-to-be efficacious prevention behaviors (e.g., education regarding condoms and condom use, needle cleaning and exchange programs) serves to undermine these practices as social norms. When university administrators debated making condoms available on campus, when news editors refused to use the explicit language needed to clearly identify prevention behaviors, when television networks refused condom advertising, when politicians contended, against prevailing evidence that education about condoms and cleaning needles promotes sex and drug use, they all played a role in promoting norms that encourage risk and in denying the very social norms that may be most effective as prevention. One avenue of change for health communication specialists is to address the audiences (e.g., agenda setters, opinion leaders, gatekeepers) who have significant power to influence social norms. REFERENCES Abdool Karim, S. S., Abdool Karim, Q., Preston-Whyte, E., & Sankar, N. (1992). Reasons for lack of condom use among high school students. South African Medical Journal, 82, 107–110. Adelman, M. B. (1992). Healthy passions: Safer sex as play. In E. Edgar & M. A. Fitzpatrick (Eds.), AIDS: A communication perspective (pp. 69–89). Hillsdale, NJ: Lawrence Erlbaum Associates. Afifi, W. A. (1999). Harming the ones we love: Relational attachment and perceived consequences as predictors of safe-sex behaviors. The Journal of Sex Research, 36, 198–206. Alberts, J. K., Miller-Rassulo, M. A., & Hecht, M. L. (1991). A typology of drug-resistance strategies. Journal of Applied Communication Research, 19, 129–151. Albrecht, T. L., Adelman, M. B., & Associates. (1987). Communicating social support. Newbury Park, CA: Sage. Alonzo, A. A., & Reynolds, N. R. (1995). Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Social Science and Medicine, 3, 303–315. Baxter, L. K., & Wilmot, W. W. (1985). Taboo topics in close relationships. Journal of Social and Personal Relationships, 2, 253–269. Beauchamp, T., & Childress, J. (1989). Principles of biomedical ethics (3rd ed.). New York: Oxford University Press. Bedimo, A. L., Bennett, M., Kissinger, P., & Clark, R. A., (1998). Understanding barriers to condom usage among HIV-infected African American women. Journal of the Association of Nurses in AIDS Care, 9, 45–58.

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IV Organizational Issues Katherine Miller

Scholars studying organizational communication are often confronted with the question of whether the processes they study are really different from processes of interpersonal communication. Is communication between a supervisor and a subordinate dissimilar from communication between any dyad? Can’t we just “tweak” the theories and findings from interpersonal and relational scholarship for understanding organizational communication? Or does context really matter? Does the fact of communication in an organization and in the process of organizing really make a substantive and theoretical difference in understanding communication? For many scholars, though, the answers to these questions are clear. And as the chapters within this section of the Handbook of Health Communication illustrate, the answer is particularly clear-cut when considering health care communication within organizational contexts. Clearly, context does matter, for the organizational context introduces complexities and contingencies that must be taken into account when examining health communication. To illustrate this, consider several defining features of organizational life, and how these features play out in health care organizations (e.g., hospitals, clinics, health maintenance organizations, nursing homes) and in health communication within other organizational contexts. The notion of goals is often considered a defining feature of organizations. In this view, an organization is a group of individuals who join together to accomplish both individual and collective goals. The concept of goals is certainly critical within health care organizations, for the goals of hospitals, clinics, and the like are marked by both urgency and complexity. In many manufacturing and service organizations, goals involve hitting production targets or meeting client expectations. These goals are certainly important. However, in health care organizations the goals are sometimes “life and death” issues and are almost always issues of great personal importance to clients. Further, the goals in a health care organization are complex, particularly in the age of managed care. The goal of providing quality care and access to a large number of people is complicated by the goal

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of keeping costs down for the organization and health care affordable for the population. Thus, the urgency and complexity of goals in health care organizations make the context clearly worthy of study. A second defining mark of organizations is the notion of structure. Organizational structure can take on a variety of forms. Organizations can be highly bureaucratic or more “organic” in structure. Organizations can be “flat” or “tall,” and marked by simple reporting relationships or complex matrix relationships. In many cases, though, structural contingencies in the organization can have an important effect on communication processes. This is certainly true in health care organizations. The structure in these organizations is often quite complex, as many health care organizations are similar to “total institutions” that include both service components and numerous support components. The structure of health care organizations is often particularly complex, too, because many of these organizations have “dual” or parallel structures. For example, most hospitals have a clear medical hierarchy, with the chief of staff heading up this structure, as well as an administrative structure, headed by a CEO or hospital president. Because the goals of these structures may often be in conflict (e.g., quality of care versus cost), the structure of health care organizations offers a particularly interesting context for the study of communication processes. Organizations are also marked by interdependence and embeddedness. The various “parts” of organizations are joined in interdependent relationships that require cooperation and coordination for the accomplishment of goals. Further, organizations and their parts are embedded within larger systems—groups of organizations and institutions that form the environment for the health care organization. Health care organizations are often characterized by incredibly complex systems of interdependence (consider, for example, the number of departments that must work together during a single patient’s stay in a hospital) and by large and turbulent environments. Even a “simple” health care organization such as a solo practitioner’s office must deal with an environment that includes other physicians for referrals, hospitals and continuing care facilities, pharmaceutical and equipment suppliers, a myriad of third party payors and insurance companies, and government and industry regulations that grow on a daily basis. Communication within health care organizations, then, must provide ways of dealing with this complicated web of relationships. Finally, most scholars see organizations as marked by culture. An organizational culture can be seen as a set of values and assumptions that emerge from and subsequently influence the behaviors of organizational participants. An organization’s culture pervades all aspects of interaction and has an enduring influence on how organizational members are socialized, how decisions are made, and how conflict is resolved. In health care organizations—as in all organizations—culture varies from setting to setting. But because of some of the issues already discussed here—the urgency of goals, the complexity of internal and environmental structure, and the constant change brought on by developments in technology and managed care—the cultures of health care organizations are often marked by both exuberance and stress. Cultural conditions such as these have a profound impact on communication processes within health care organizations. In short, then, context does matter. Communication in health care organizations—and communication about health within other organizational contexts—provides a unique and fertile area of study for communication researchers. It is little surprise, then, that the study of communication in health care organizations has been a vibrant area of study for a number of years. The chapters presented in this section provide an overview of where that scholarship has been in the last few decades and the trajectory of theory and research for the future.

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In the first chapter in this section, “Organizational Forms and the Provision of Health Care,” John Lammers, Ashley Duggan, and Josh Barbour provide a roadmap for our study of health care organizations. Using institutional theory as a guiding framework, these authors develop a comprehensive typology of health care organizations and consider critical factors such as managed care that influence various types of health care organizations. The next two chapters in this section follow up on this typology by examining critical components of people working within health care organizations. First, in “Stress and Social Support in Health Care Organizations,” Julie Apker and Eileen Berlin Ray look at individuals who work in health care organizations and review an important body of work that has considered these workers. This research on stress, burnout, and social support points to ways in which the unique context of health care organizations influences the mental and physical health of health care workers and illustrates the important role that communication plays in both contributing to and coping with these problems. Then, in “Groups and Teams in Health Care: Communication and Effectiveness,” Marshal Scott Poole and Kevin Real examine the teams that are increasingly doing the work of health care organizations. Poole and Real consider various types of health care teams, the contingencies that have led to their prevalence, and the nature of communication within these groups. The final two chapters in this section take on somewhat less traditional—but no less important—topics in the area of communication and health care organizations. First, in “Organizational Rhetoric and Health Care Policymaking,” Charley Conrad and Holly Gene McIntosh acknowledge the complex environment in which health care organizations exist by considering the ways in which rhetoric in the organizing and political processes occur and how this organizational rhetoric influences the nature of health care organizations and the nature of health care that can be provided in these organizations. Finally, in “Working Well: Addressing Individual and Organizational Wellness Initiatives,” Patricia Geist-Martin, Kim Horsley, and Angele Farrell look not at health care organizations but, instead, at processes of health communication that occur in all organizations. Their consideration of ways in which we can communicate about health and about healthy ways of working has implications for the study of a wide range of organizational communication processes in all sectors of society.

15 Organizational Forms of the Provision of Health Care: An Institutional Perspective John C. Lammers University of Illinois at Urbana-Champaign

Joshua B. Barbour University of Illinois at Urbana-Champaign

Ashley P. Duggan University of California at Santa Barbara

Health organizations are among the largest, most complex, technologically rich, and valueinfused of any human arrangement. As such, the field of health and medical care in North America—and indeed the world over—provides a diverse and dynamic arena for communication and organizational research. The organizations we refer to as health organizations today include forms whose structures have changed little in one hundred years, such as hospitals. Health organizations also include forms that proliferate today but barely existed one hundred years ago, such as HMOs, hospice, and prepaid multispecialty medical groups. It is therefore appropriate that we turn our attention to these changing settings. Even a cursory glimpse of changes in health care in North America over the last century will convince the observer that a view of the health organization as the container (Putnam, Phillips, & Chapman, 1996) within which communication occurs is an insufficient approach for the study of health organizations. In the United States, the health care sector has witnessed the rise of new organizational forms, the growth of professional norms (Abbott, 1988; Freidson, 1970, 1986), myriad connections to other sectors of society (Meyer & Scott, 1983), and changes in arrangements for the delivery of medical care (Sharf & Street, 1997). An adequate survey of communication in health organizations, therefore, requires a perspective that will recognize the settings (both organizational and institutional) where individuals recognize and create meaning as well as the processes by which these organizations and institutions take shape and change. We approach our survey of organizational forms in this chapter from an institutional perspective (Meyer & Scott, 1983; Scott, 1995; Scott, Ruef, Mendel, & Caronna, 2000).

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Generally, the institutional perspective emphasizes the rules, values, and beliefs that surround organizations and their members as critical components of behavior and communication practices within organizations. This approach to organization studies has its roots in the work of Selznick (1948, 1949, 1957), but has a well-developed history in research on organizations more recently (Meyer & Scott, 1983; Meyer, Scott, & Deal, 1983) as well as on health organizations (Alexander & Fennel, 1986; Alexander, Fennell, & Halpern, 1993; D’Aunno & Zuckerman, 1987; Mick & Associates, 1990; Scott et al., 2000). The institutional perspective recognizes that as organizations develop, they take on lives of their own, and that the symbolic environments external to organizations have determinant effects on the shape, behavior, culture, climate, and even survival of organizations. In the pages that follow we first lay out several tenets of the institutional perspective that will guide our identification of organizational forms in health care and help explain the changes we are witnessing. Second, based on the institutional perspective, we turn to a taxonomy of organizations engaged in the funding and regulating of health and medical services, organizations that represent health professionals and other health organizations, and organizations that deliver health services. With this inventory of forms complete, in the third section we review trends and change forces at work in contemporary health care including demographics, disease chronicity, technology, and managed care. Finally we address future research by considering ways that theory building in organizational communication could make common cause with research in health communication. AN INSTITUTIONAL APPROACH

Four themes characterize institutional analysis (Scott, Meyer, & Associates, 1994, pp. 2–3). First, the observable structures and routines that make up organizations are reflective of rules and structures in wider environments. Institutional analysis argues that the existence of organizations such as hospitals, health maintenance organizations, or health advocacy groups depends at least partially on the institutionalization of such forms, that is, the prior development of beliefs, values, and behavioral expectations. Second, the institutional perspective looks to the external environment for the logic of organizational structures rather than the internal, local functional requirements of production. Third, institutionalized meanings—those portable beliefs we have about how organizations should look and what they typically do—pervade organizations. As Scott, Meyer, and Associates (1994) explained, “environmental patterning is not only narrowly legal and economic, but also broadly social and cultural as well” (p. 3). So, despite our expectations to the contrary, hospitals in the profit-making, nonprofit, and governmental sectors look and operate very similarly, and the meaning of professionalization—autonomy and ethical standards—cuts across occupations from physicians to nurses to radiological technicians. Finally, the institutional perspective on organizations recognizes the drift toward the “rationalization” of organizational forms. Scott, Meyer, and Associates (1994) wrote, “the creation of cultural schemes [define] means-ends relationships and standardizing systems of control over activities and actors” (p. 3). Organizations—including health organizations—emerge as means to accomplish culturally valued ends. In addition to these themes, institutional analysis also employs a number of concepts in explaining trends across organizations as well as behavior and communication processes within organizations. We use three of these concepts in this chapter: a sectoral view of society, rational myths, and isomorphic processes. First, institutional analysis views organized activity in terms of societal sectors where decision-making rights tend to be hierarchically

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distributed. Decision-making rights range from resource-oriented funding decisions at higher levels, through programmatic decisions at middle levels, to instrumental decisions at the lowest levels of any given sector. In addition, institutional and technical influences may be observed to characterize sectors of organized activity. Heavily institutionalized sectors are guided by pervasive beliefs about appropriate conduct that are idiosyncratic to organizations in a particular sector. Technical sectors, on the other hand, are characterized by the exchange of easily defined goods or services. Educational organizations, for example, are highly institutionalized, that is, infused with beliefs and values about their appropriate operation irrespective of the empirical evidence about those processes. Many manufacturing industries, in contrast, are highly technical, not because of complexity in their production processes, but because their core processes are well understood and because their products are rationally exchanged in marketplaces (Meyer & Rowan, 1977). The usefulness of these concepts becomes evident when one considers that the health services sector is highly institutionalized yet shifting toward technical norms of efficiency (Navarro, 1999). A second concept used in institutional analysis that is especially appropriate in understanding the communication in and of health organizations is the rational myth (Meyer & Rowan, 1977). A rational myth is a belief generated in and through organizations about the legitimacy of certain actions leading to desired outcomes of organized processes. For example, Meyer and Rowan (1977) cite the use of affirmative action offices and guidelines as a rational myth (p. 343). Because U.S. federal funding and contracting laws require certain fair hiring and recruiting practices, organizations go to considerable lengths to indicate to their environments that such practices are the local norm, while actual practices and outcomes might suggest very different processes (Meyer & Rowan, 1977). Geist and Hardesty (1992) documented the creation of such myths (while not using that term) in their study of hospital staffs’ responses to the imposition of Diagnosis Related Groups (DRGs) in the mid 1980s. Third, isomorphic processes in organizational fields such as health care contribute to the uniformity we can observe across organizations. DiMaggio and Powell (1983) identified three isomorphic forces. Coercive isomorphism refers to the adoption of a particular organizational form or process because of a dependency of one organization on another. For example, Medicare reimbursement rules require hospital accreditation making hospitals dependent on the accrediting organization. Mimetic isomorphism refers to the adoption of practices and structures based on observations of successful practices in other organizations or even in other fields. Ritzer’s (1996) work on the “McDonaldization of society” discusses examples of mimetic isomorphism at work in many sectors including health care. Normative isomorphism comes about through the adoption of practices deemed appropriate by trade, industry, and professional associations. The rapid spread of the health care quality improvement movement (Berwick, Godfrey, & Roessner, 1990) is an example of normative isomorphism at work. In sum, an institutional perspective allows an integrated method of exploring the diverse and complex field of health organizations. It views organizations as products of the rules, values, and beliefs of their environments, and offers concepts useful in understanding the traditional and newer forms of organizations in the health sector. Finally, an institutional perspective provides an opportunity for health communication researchers to tie individual micro-level phenomena in health organizations to wider, macro-level changes. In the section below, we turn to an inventory of the forms of health organizations by sector. These organizational forms are the sites where interpersonal health communication takes place and the contexts of periconsultative communication (Street & Real, 2001).

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AN INVENTORY OF HEALTH ORGANIZATIONS

This inventory of organizational forms follows patterns in the health services sector. We begin with an overview of the sector. We then turn to a description of the organizations that provide or channel funding in the sector, continue with organizations that programmatically stipulate activities in the sector, and end with organizations that deliver services in the sector. Overview of the Health Care Sector

As an institutional sector, health care in the United States is a major domain of activity, accounting for 7.3% of total employment and 13.5% of the Gross Domestic Product (roughly 1.1 trillion dollars) in 1997 (U.S. Census Bureau, 2000a). The health sector is characterized by elements of centralization as well as elements of decentralization. The federal government’s Centers for Medicare and Medicaid (CMM), formerly the Health Care Financing Administration (HCFA), is the largest single payer of health care services in the country, accounting for 43.6% of total national health care expenditures (U.S. Census Bureau, 2000a). This represents a substantial central position in the field. In contrast to this centralization, over 777,000 physicians practiced medicine in the United States in 1999 (two thirds of whom were in office-based practices; see Table 15.1), and there were in excess of 19,000 medical groups delivering health services (Havlicek, 1999). Adding to the sheer size of the sector is considerable complexity; therefore, it may be inappropriate to describe health care in the United States as a single system. Williams and Torrens (1998) identify four separate systems of care: a well-financed system of care for insured persons; a public system of care that primarily serves the poor; the Veterans’ Administration Health Care System that since the Civil War has provided care to retired military personnel; and the U.S. Department of Defense system of care. Our inventory of organizational forms understates this complexity. Nevertheless, as sites of health communication events, such an inventory should be helpful. Organizations Concerned with Financing and Regulating Health Services and Products

Centers for Medicare and Medicaid (CMM). The CMM is the U.S. agency that provides health insurance coverage to about seventy-four million persons, and, as mentioned above, accounts for about 43.6% of the national health care budget for personal health expenditures (U.S. Census Bureau, 2000a). The CMM came into existence in 1965, when Medicare and Medicaid legislation was signed. It is fair to say that the CMM are connected in a meaningful way to almost every physician and hospital in the United States. Because of their economic power, both individual and corporate providers have adopted many uniform procedures and standards. For example, in 1983, the introduction of DRGs standardized much hospital record keeping. The rules and regulations imposed by the CMM for reimbursement have likely contributed to the corporatization of health care, “[stimulating] hospitals to hire planners, lawyers, and financial advisors, who then found new functions for themselves in arranging merges and acquisitions” (Starr, 1982, p. 434). Chappelle, Blanchard, Ramirez-Williams, and Fields (2000) described how Medicare rules promulgated by CMM constrain how physicians can teach medical students to enter patients’ information into medical charts. Data entered into a chart by a student cannot then be used as a record justifying reimbursement (Chappelle, et al., 2000, p. 37). The

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268,040 334,000 467,700 552,700 615,400 720,300 737,800 756,700 777,900 797,600 813,800

5.1a 7.1 8.9 10.3 12.2 13.7 13.6 13.4 13.5 13.1 13.2

Year

1965 1970 1980 1985 1990 1995 1996 1997 1998 1999 2000

4,289 6,371b 10,762 15,485c 16,576d 16,787 19,820 n.a. n.a. n.a. n.a.

Medical Groups in the U.S. 6.6 6.3b 8.2 9.1c 11.5d 10.5 9.3 n.a. n.a. n.a. n.a.

Mean Medical Group Size n.a. 6,774 6,606 6,529 6,312 5,992 5,911 5,812 5,606 5,626 5,565

Non-Federal Hospitals (NFH) 129 145 189 184 176 172 167 167 167 167 167

Beds per NFH n.a. 15,700e 23,065f 19,100 n.a. 16,170 16,197 16,052 n.a. 17,083 16,886

Nursing Homes HMOs ≈0 37 236 393 556 562 630 652 651 643 568

Total Medicare Certified Hospices ≈0 ≈0 31g 158 806 1,857 2,154 2,274 2,215 2,274 2,273

≈0 3.0 9.1 18.9 33.3 50.7 59.7 66.8 76.2 81.1 80.4

HMO Enrollees (Millions) n.a. n.a. n.a. n.a. 691 802 n.a. 983 n.a. 1,088 1,079

n.a. n.a. n.a. 28.5 38.1 91.0 n.a. n.a. 98.0 n.a. n.a.

PPO Enrollees PPOs (Millions)

Note. The data in columns two, three, six, seven, and eight are from Health, United States, 2002, retrieved December 13, 2002 from http://www.cdc.gov/nchs/data/hus/ tables/2002/02hus113.pdf. The data in columns four and five (1965–1996) are from Medical Group Practices in the U.S.: A Survey of Practice Characteristics, by Havlicek, P. L., Chicago, IL: The American Medical Association. The data in column nine are from Hospice Facts and Statistics, by the National Association of Home Care, retrieved December 13, 2002 from http://www.nahc.org/Consumer/hpcstats.html. The data in column ten and eleven (1965 to 1980) are from Managed care: A Decade in Review, by Kraus, N., Porter, M., Ball, P., 1980, St. Paul, MN: InterStudy; the data in columns ten and eleven (1985 to 2000) are from the The HMO Trend Report, St. Paul, MN: InterStudy. The data in columns twelve and thirteen are from the American Association of Health Plans, Managed Care Facts, 1998 retrieved December 13, 2002 from http://www.acponline.org/pmc/trend data.htm. a for 1960 b for 1969 c for 1984 d for 1991 e for 1973–1974 f for 1977 g for 1984

Physicians Practicing in the U.S.

National Health Expenditures (% of GDP)

TABLE 15.1

US Health Organization Statistics, Various Years: 1965–1998

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uniformity of practices following CMM rules, regulations, and guidelines seems a powerful example of coercive isomorphic pressures in the health care field (DiMaggio & Powell, 1983). The same 1965 legislation that created Medicare also created Medicaid, a jointly funded venture between the federal and state governments to provide medical care to the needy in the United States. Each of the 50 states establishes its own eligibility standards; determines the type, amount, duration, and scope of services; sets the rate of payment for services; and administers its own program (CMM, 2001b). While Medicaid provides a safety net for poor persons in the United States, it is criticized by advocates of the poor for being too stingy with benefits, by fiscal conservatives as being too costly, and by providers, particularly hospitals and physicians, as providing insufficient reimbursement. Policy researchers indicate that the divide between insured and uninsured is growing and that the United States is headed for a two-tier health care system (Reinhardt, 1996). Insurance Organizations. Health insurance organizations are important in the United States because they fund about one third of all expenditures for personal medical services (33.1% in 1998 according to the National Center for Health Statistics, 2001). Although these expenditures are smaller than the payments the government makes (43.6%), they are larger than out-of-pocket payments (19.6%). According to the U.S. Census Bureau (2000b), 944 firms provided health and medical insurance in the United States in 1997. These firms took in revenue of $203.1 billion in that year, employing about 328,000 workers at 3,209 establishments including organizations that operate as HMOs or own HMOs. Organizations that Play a Programmatic Role in the Health Sector

Accreditation Organizations. The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) is the nonprofit organization that accredits hospitals, health care networks, home care organizations, long-term care facilities, assisted living residencies, behavioral health organizations, ambulatory care providers, and clinical laboratories. Though the organization has operated since 1951, 1965 Medicare legislation provided substantial additional authority by stipulating that government reimbursements would only be paid to hospitals and clinics that were accredited. In general, accreditation indicates that an organization meets certain formal and performance standards. To earn and maintain accreditation, an organization must undergo an on-site survey by a Joint Commission survey team at least every two or three years. Since 1997, the JCAHO has used performance measures in the accreditation process. The Joint Commission’s organizational members include the American College of Physicians, the American Society of Internal Medicine, the American College of Surgeons, the American Dental Association, the American Hospital Association, and the American Medical Association. As mentioned above, JCAHO accreditation is important to health organizations because it is required by many third-party payers, state licensing agencies, managed care organizations, and financial institutions (JCAHO, 2001a). In addition to organizations that accredit hospitals and other care facilities are the organizations that accredit schools of medicine and public health. As Pfeffer (1981) noted, it is the curricula of academic organizations that form the domain of a field. A leading function of academic accrediting organizations is the standardization of curricula in colleges and universities. Among the more important accrediting organizations in the health sector are the Association of American Medical Colleges (AAMC), founded in 1876, and the Association of Schools of Public Health (ASPH), founded in 1953. The AAMC accredits

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and lobbies for 125 U.S. medical schools and 16 Canadian medical schools. It also represents 400 major teaching hospitals and health systems and 90 academic and professional societies. The ASPH represents 29 schools of public health and 9 educational programs in public health. Like the CMM, the accrediting organizations may be seen as an isomorphic force in the health sector. The rules imposed by JCAHO, for example, reach far into the clinical practice of medicine in ways that are a mystery to some providers (Yost & Serkey, 1999), and its methods of measuring for quality improvement are adapted from industrial efforts begun in the 1970s (Brennan, 1998). The presence of such organizations adds force to the institutional argument that beliefs and values at the field level influence behaviors and structures at the organizational level. Trade and Professional Associations. The Gale Directory of Associations (Gale Research Company, 2001) lists 3,381 national associations serving the health services industry in the United States, and an additional 3,651 operating at the regional, state, and local levels. These associations—of professionals, organizations, and/or patients— make up the warp and woof of occupations, organizations, and clients in the health care industry. In this section, we consider just three associations: the American Medical Association, the American Nursing Association, and the American Hospital Association. These associations have several features in common. They each admit both individual members and organizational members. They each provide services to their members including advocacy, and each is over a hundred years old. As such these three represent the institutional aspect of the field of health organizations. The American Medical Association (AMA) reported that it had just under 300,000 members in 1999 (AMA, 2001), accounting for roughly 38% of American physicians. Compare this to the over 82% represented in 1962. The Association describes itself as “the patient’s advocate and the physician’s voice” (AMA, 2001). Founded in 1847, the AMA’s “agenda remains rooted in [its] historic commitment to standards, ethics, excellence in medical education and practice, and advocacy on behalf of the medical profession and the patients it serves” (AMA, 2001). But with less than one half of U.S. physicians among its members, the Association has recently struggled to define itself as relevant. Several issues put the American Medical Association in difficulty at this historic juncture. First, the organization of medical practice has changed drastically. As an association primarily of individual members, the AMA is not as relevant as it once was because so many physicians are now employed or members of medical groups. Second, physicians are not as unified about policy matters as they once were. For example, the Association’s membership includes physicians in favor of national health insurance and those opposed. In an effort to increase its revenues in the face of dwindling membership, the Association endeavored to offer a series of product endorsements in 1998 that created great controversy (Tye, 1999). However embattled it may be, from an institutional point of view, the AMA serves as a centralizing power and voice for health concerns, particularly for providers in the United States. As of 1996, the American Nurses Association (ANA) represented the interests of 2.5 million U.S. nurses (82.7% actively employed as nurses). In 1897, the directors of training at 10 Eastern and Midwestern hospitals founded the Association. Aside from the traditional status difference between physicians and nurses, their associations and work situations also contrast sharply. The ANA is formally composed of the 53 state associations, 13 affiliated associations, and approximately 70 other organizations that represent aspects of professional nursing in the United States. As an organization, it is more integrated and

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federated than the AMA. Individual members of the ANA are automatically enrolled as members of constituent associations at the state level. The American Hospital Association (AHA) was founded in 1898 (American Hospital Association, 2000a). Its members include nearly five thousand hospitals, health care systems, networks, and other providers of care. The AHA also maintains affiliations with state and metropolitan associations, and an additional 37,000 individual members. The AHA also plays a major role in the standardization of hospital services through its education and publishing functions (AHA, 2000a). The AHA acts as an advocate for hospitals regarding issues of concern to owners, managers, and workers, as well as for patients. AHA advocacy issues currently include concerns about hospital worker shortages, reimbursement for care provided to uninsured patients, and reducing the regulatory maze that hospitals must navigate (AHA, 2000a). Organizations Instrumental in the Delivery of Health Care

Physicians’ Offices. The simplest organizational form for delivery of health services is the office of the solo-practicing physician. This site of medical communication episodes has undergone fairly rapid alteration. The number of physicians practicing in the United States has increased steadily over the last two decades from 153 per 100,000 persons in 1975, to 245 per 100,000 in 1997 (Havlicek, 1999), but the percentage of physicians practicing as solo providers has declined. For example, the percentage of family practitioners in solo practice shrank from 54% in 1980 to 25% in 1997 (American Academy of Family Practice, 2001). Between 1965 and 1996, the percentage of nonfederal physicians accounted for by medical group positions increased from 10.6% to 32.1% (Havlicek, 1999). In spite of these trends, the most common practice type, and the one that remains a cultural icon, is the solo practice. As a setting for health communication episodes, the solo physician’s office will typically employ three or four nonphysicians (Community Health Care, 2001) and has traditionally provided medical services to more than one member of a family over extended periods. A single individual that works closely with the physician generally carries out the nursing function; another staff person performs the appointments and records function; and the billing function may be shared or handled by a single staff person. Today these functions are frequently further removed from the control of the physician, as practice management firms contract with physicians to provide all of the ancillary services involved in the traditional medical practice (Robinson, 1997). Medical Groups. As reported in Scott and Lammers (1985), the medical group as we know it today was nonexistent at the turn of the century. Not only did the vast majority of physicians practice as independent providers, but also medical groups were even seen as a threat to the practice of medicine and the quality of medical care (Starr, 1982, p. 213). The first medical groups (for example, the Mayo brothers clinic in Rochester, Minnesota) provided contract services to industry (in the Mayo case, to railroads). But suspicions about the ethics of group practice lingered until nearly World War II, when economies of scale and burgeoning specialization made practice combinations more feasible and increasingly popular (Starr, 1982, p. 213). As of 1996, there were nearly twenty thousand medical groups in the United States (see Table 15.1), accounting for 206,557 physician positions (Havlicek, 1999). The mean size of medical groups appears to have leveled off or fallen slightly from a high of 11.5 physicians in 1990 to 9.3 physicians in 1996 (see Table 15.1).

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A number of researchers have commented on the transition of physicians from solo to group practices (Freidson, 1970, 1986; Scott & Lammers, 1985; Wolinsky & Marder, 1985). Some argued that the corporatization of medicine (Relman, 1998) led to proletarianization of the occupation (McKinlay & Arches, 1985), whereas others argued that neither a professional stratification approach (Freidson, 1986) nor a Marxist analysis correctly captured the changes underway in medical practice (Annandale, 1989). For example, Gross and Budrys (1991), in a study of physicians’ interaction in a prepaid group, found that the physicians they studied had entered into prepaid practice with the understanding that their professional autonomy would be independent of administration. The same physicians later discovered, however, that their professional autonomy had not been preserved. As administrative controls over their practice increased, their satisfaction with professional aspects of practice declined. Lammers (1992) reported similar findings. The institutional perspective points to an isomorphic process in the changes underway in group practices. Medical practice management firms conform to market principles and share management philosophies. Medical groups grow more similar as more of them are managed by these firms. For example, the Medical Group Management Association reported that median salaries of physician-executives and other administrators of physicianowned medical groups fell by as much as 17% in 2000, while those of executives of nonphysician-owned groups rose by between 5 and 22% (Medical Group Management Association, 2000). Concurrently, as managed care firms put pressures on communities of physicians, physicians are more likely to join in groups to reduce the costs of practice (Robinson, 1998). Hospitals. According to the AHA, in 1998 there were a total of 5,606 nonfederal hospitals in the United States (see Table 15.1). Of the total shown in Table 15.1 for 1998, state and local governments owned 1,218 (21.7%) and investors owned 771 (13.8%). The federal government controlled an additional 275 (4.9%) hospitals, and the remaining 3,342 (59.6%) hospitals were nongovernmental, nonprofit hospitals, organized under state laws as nonprofit organizations and classified by federal laws as tax-exempt charitable entities (AHA, 2000b). There are two major differences between nonprofit hospitals and investorowned hospitals. The first is the exemption from taxes granted to nonprofit hospitals by local governments (property taxes), state governments (income taxes), and the federal government (income taxes and postage rates). Second, investor-owned hospitals are expected to distribute dividends or profits to their owners/investors (Hansmann, 1981) whereas the operating surpluses of nonprofit hospitals must be reinvested in the hospital’s activities. The funding environment of investor-owned and nonprofit hospitals is otherwise similar. Both types rely largely on third-party payments to reimburse the $11,294 median cost of a hospital stay in 1997. The majority of hospitals (that is, nonfederal hospitals, or 71%) are members of a network or system of hospitals (AHA, 2000b). This network means that many hospitals share similar management structures, indicating further isomorphic pressure toward conformity. Investor-owned and nonprofit hospitals (as well as government hospitals) are subject to the accreditation policies of the Joint Commission for the Accreditation of Health Organizations. Finally, roughly one third (35%) of all personal medical care expenditures are made by the federal government, contributing to the similarity of hospitals as an organizational form. A distinguishing feature of hospitals, noted by some communication researchers (Geist & Hardesty, 1992), is its dual hierarchy: physicians are organized in one hierarchical staff, and other hospital personnel—including nurses and other departments and staff—are organized in a second chain of command. Geist and Hardesty noted that this arrangement

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leads to the problem of “multiple subordinates” (p. 37). This structure has few counterparts in other Western organizations and may account for why hospitals have changed little during a century of dramatic technological and financing changes. But, as they point out, this structure also contributes to the nature of the hospital as a negotiated order (see also Strauss, 1978; Strauss, Fagerhaugh, Ruczek, & Wiener, 1985). Also notable, most U.S. hospitals offer services much more intensive than room, board, personal, and general nursing care. The hospital is continuously open and staffed to provide care for persons requiring “medical, surgical, psychiatric, testing, diagnosis, and treatment for illness, injury, deformity, infirmity, abnormality, disease, or pregnancy” (JCAHO, 1994, p. 366). Clinical laboratory services, diagnostic X-ray services, and treatment facilities for surgery or obstetrical care have become standard features of hospitals accredited in the United States (JCAHO, 1994). Nursing Homes. The National Center for Health Statistics (NCHS) identified 16,700 residential nursing facilities in the United States in 1995, with an average size of 106 beds (NCHS, 1997) (see Table 15.1). Gubrium (1975) provided an early analysis of life in this organized health setting that sets it apart from hospitals or clinics. Nursing homes are unusual among medical contexts because of the extremely high rates of mortality after institutionalization (Thorson & Davis, 2000). Also, patients and providers in nursing homes, as contrasted with hospitals and other settings, interact almost entirely within the organizational context and in isolation from other social influences (Nussbaum, 1990). Hospice. While today hospice is seen as a common part of the health care landscape in American communities, it is an organizational type that has emerged in the United States in only the last 25 years. According to the Hospice Association of America (HAA) (2001), prior to 1974, there were no hospices in the United States. Today there are 2,273 hospices approved to receive Medicare payments (see Table 15.1). There are also an estimated 200 hospices staffed by volunteers (HAA, 2001). Hospices in the United States are organized in four different ways: as both proprietary and nonprofit home health agencies (providing care in homes rather than in inpatient facilities); as operating units or departments of hospitals; as operating units or departments of a skilled nursing facility or other nursing facility; and as freestanding, independent, mostly nonprofit organizations (HAA, 2001). As a health care organization, the hospice is distinguished by two characteristics. In contrast to most other health organizations, the purpose of hospice is to provide exclusively palliative rather than curative care. Hospices provide “medical, social, emotional, and spiritual services to terminally ill patients and their family members” (HAA, 2001). Second, care provided in the hospice setting is interdisciplinary, involving the coordinated work of physicians, nurses, medical social workers, therapists, counselors, and volunteers (Berteotti & Seibold, 1994). Third, hospice relies heavily on a volunteer workforce. According to industry data, volunteers outnumber paid workers: 46,793 employees to 47,671 volunteers (HAA, 2001). Because of variations in hospice organization and location, staff sizes are difficult to determine, but one report puts the mean number of beds in inpatient hospice facilities at 13 (National Hospice Organization, 1996). Though hospices account for a small portion of expenditures for health care in the United States, they are important sites for the delivery of care. For example, in 1998 hospice services accounted for 0.2% of total Medicaid payments. Yet in that year (1998), hospices provided care to 401,140 Medicare patients throughout the United States (National Association for Home Care, 2000). The rise of hospice in America is a signal of our aging

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population. It represents a shift in our values about palliative and curative services. Hospice as a newer form of health organization has had less exposure to normative pressures and exhibits more variety and flexibility than hospitals. Parish Nurse Programs. Koch (1998) reported that an estimated 2,500 nurses in the United States work in parish nursing programs. The typical program links a hospital and a religious parish with an individual nurse. A nurse working in the context of the church is not a new concept, but the profile of the role has changed considerably over the last two decades. Parish nursing is a health promotion, disease prevention role that incorporates spiritual care but also entails an important boundary-spanning role (Tushman & Scanlan, 1981). The breadth of parish nursing has grown considerably since 1984, from 6 nurses working in the northwest suburban areas of Chicago in partnership with 6 local churches’ to nurses working within all mainline denominations in 48 states, Canada, Australia, and Korea by 1997 (McDermott, Solari-Twadell, & Matheus, 1998). Departments of Public Health. In the United States, there are 3,169 local public health agencies (NACHO, 1991). Local government structures directly influence local public health departments’ activities and services. As Shonick (1981) argued, local governments lack the relative power of the federal and state governments to tax and, therefore, to fund expensive enterprises such as personal medical services, so public health departments tend to be fiscally stressed and less visible than private hospitals and clinics. Nonetheless, county governments are the most common type of local government structure that house local public health agencies (U.S. Department of Health and Human Services [USDHHS], 1991). Services provided by local health agencies most commonly include immunizations; health tuberculosis screening; sexually transmitted diseases screening and treatment; chronic diseases screening; care for women, infants, and children; family planning services; prenatal care; HIV/AIDS testing and counseling; and home health care. State health agencies (SHAs) in all 50 states, the District of Columbia, and 8 territories administer public health services. SHAs usually are organized as either a freestanding, independent agency responsible directly to the governor or the board of health or as a component of a super agency. The SHA is an independent government agency in 31 (62%) states and a component of a state government super agency in 19 (38%) states and the District of Columbia. Of the seven territories for which information is available, SHAs are independent agencies in six territories and a component of a super agency in one territory (USDHHS, 1991). Pharmaceutical and Biotechnology Organizations. According to industry data, 1,283 companies comprise the biotechnology industry sector, although the U.S. Census Bureau (2000b) lists 1,767 firms engaged in the manufacture of drugs. The sector employs 153,000 people and in 1998 recorded $18.6 billion in revenues. The sector, like many others in health care, has been characterized by recent waves of mergers and acquisitions. In 1995, prescription drug sales amounted to just over $80 billion in the United States. The major firms that manufacture and develop drugs are headquartered in the United States, the United Kingdom, Sweden, Germany, France, Japan, and Switzerland. Despite the size and complexity of the sector, the pharmaceutical industry is not highly centralized (Kanavos, Mrazek, & Mossialos, n.d.). The market tends to be broken into segments by therapeutic classes of drugs. The top 10 pharmaceutical companies account for about 31% of prescription drug sales. The largest companies on a worldwide basis

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include Glaxo Wellcome (U.K.), Merck (U.S.), Hoechst Marion Roussel (Germany and France), Bristol Myers Squibb (U.S.), American Home Products (U.S.), and Novartis (Switzerland) (Patent Fairness Act of 1999, 1999). Compared to the highly institutionalized hospital field, the drug industry in the United States is much more decentralized and operates as a technical sector (Meyer & Scott, 1983). It follows market-driven norms of efficiency, pursuing the manufacture of products and services that generate profits for investors and have measurable effectiveness. Even as the hospital field is being pressured to develop more technical efficiencies, however, the pharmaceutical industry is pressured to adopt prosocial policies with respect to certain classes of drugs such as d4T, an antiretroviral drug desperately needed by people in Africa (Prusoff, 2001). TRENDS AND CHANGE FORCES IN HEALTH ORGANIZATIONS

Having completed our review of organizations in the health services sector, we turn our attention to forces influencing changes in these organizations. While many forces could be identified, this section focuses on four developments in health care: the changing demography of the U.S. population, the rise of chronic diseases, changes in material technologies, and the development of managed care and associated management innovations. Each of these change forces has implications for health organizations. Demographics

Health service organizations and activities—and the communication issues arising from them—reflect the age, gender, and ethnic composition of society. Demographic forces influence the nature of the population served by health organizations, the diseases and ailments treated by health organizations, and the resources available for health organizations. The single most notable feature of demographic changes facing health organizations in the United States is the increasing size of the aged population. At the beginning of the 20th century, the portion of the population 60 years of age and over was 6.4%. In 2000, that figure had risen to 16.4%, and by 2050, it is estimated that 25.0% of the population will be over 65 (Dowd, Monaco, & Janoska 1996). These population trends translate directly into demand for health services, as over one half (52.5%) of older Americans report living with some disability, and one third (33.4%) report living with a severe disability (Administration on Aging, 2000). Additionally, according to the U.S Administration on Aging, chronic conditions are most frequent among the elderly. In 1996, the most frequently occurring conditions were arthritis, hypertension, hearing impairments, heart disease, cataracts, orthopedic impairments, sinusitis, and diabetes (Administration on Aging, 2000). Implied in the population shift figures reported above is the shrinking size of a healthy workforce on whose shoulders the care of elderly will rest. By 2050, the portion of the population that will be between 20 and 60 will be at its lowest since 1900 (48.1%). With more than one half of the population dependent on this group, we may expect concerns about efficiency to be especially severe in health organization management. Disease Chronicity

Chronic diseases are those “that are prolonged, do not resolve spontaneously, and are rarely cured completely” (U.S. Centers for Disease Control and Prevention, 1999). Chronic

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diseases are now the leading cause of illness, disability, and death in the United States and attract the majority of health care resources (Institute of Medicine, 2001, p. 27). Care for a chronic disease typically involves a variety of clinicians and health care settings over extended periods. Strauss, Fagerhaugh, Ruczek, and Wiener (1985) first noted the importance of disease chronicity for health services. Their concept of “trajectory” involves health events shaped by social interaction. From this point of view, chronic diseases or health conditions are not only clinically different from acute diseases or health conditions, but also they are socially distinct. The trajectory of a health event is marked by interaction between the patient and a multitude of others, including but not limited to physicians, nurses, social workers, pharmacists, and family members. Presently the U.S. Institute of Medicine is encouraging providers to recognize the importance of improving chronic care services as a part of overall quality improvement in U.S. health care systems. Health care for chronic conditions is different from care for acute episodic illnesses. Care for the chronically ill frequently requires a collaborative, multidisciplinary approach. Effective methods of communication among caregivers and between caregivers and patients are critical to providing high-quality care. Personal health information must accompany patients as they transition from home to clinical office setting to hospital to nursing home and back (Institute of Medicine, 2001, p. 9). But physicians, hospitals, and other health organizations typically work so independently that they frequently provide care without the benefit of complete information about patients’ conditions, medical histories, or treatment received in other settings (Institute of Medicine, 2001, p. 9). Moreover, the collaboration and teamwork called for by the rise of chronic diseases seems to occur more frequently among nonphysicians than among physicians, whose training and socialization prepares them for roles as autonomous and independent practitioners rather than as collaborators. Technology

Recent innovations and improvements in communication technologies have opened many channels for health education and delivery (President’s Information Technology Advisory Committee, 2001). Applications of information technologies are found in patient scheduling, clinical and financial records, telemedicine, imaging, Web-based instruction, clinical decision support, quality improvement, biomedical research, robotics, remote visualization, and video-assisted endoscopic surgical procedures, to name only a few. And, the rapid adoption of a wide range of technologies has given rise to new occupational groups including specialized operators (such as radiological technicians—see Barley, 1986) and more general clinical engineers. The complexity of communication technologies has also contributed to the rise of the field of medical informatics (Greenes & Shortliffe, 1990). Clearly, information technologies hold great promise in health organizations, but their potential is as yet unrealized for a number of reasons (President’s Information Technology Advisory Committee, 2001). Currently public and private payers of medical services do not reimburse providers for applications that have demonstrated value such as telemedicine or patient-provider interactions over the Internet. In addition, decision-support tools can provide critical links between a current patient’s condition and previous clinical studies, but such systems await investment. Finally, the biomedical community “has tended to rely on information technology innovations that are produced by investments in other industries and other parts of government” (President’s Information Technology Advisory Committee, 2001).

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Managed Care

Ten years ago, the words “managed care” had barely entered the parlance of health communication research. Today, managed care arrangements dominate the health care scene in the United States. This section describes what managed care commonly refers to, provides a picture of its growth over the last decade and a half, and lays out opportunities and implications for health communication research (see also Apker & Ray, this volume). Managed care refers to a financial and organizational arrangement for the provision of health care services (almost always but not exclusively medical services). The roots of managed care can be found in early, prepaid group practices such as the Ross Loos Clinic in Los Angeles in the 1920s and the Kaiser plans of the 1940s (Starr, 1982). Both of these prepaid health plans charged industrial workers a few cents a day for medical coverage and both were controversial plans. Ross Loos, through a variety of mergers and acquisitions over the years, is today known as CIGNA. By the year 2000, CIGNA covered 13.4 million lives in its managed care plans (U.S. Security and Exchange Commission, 2000). Kaiser is the acknowledged leader in nonprofit prepaid health plans, covering about 8 million lives. Neither of these plans were originally known as Health Maintenance Organizations. That term came into common use under the federal government’s HMO Act of 1973 (Kongstvedt, 1989; Mayes, 1999). This legislation did much to spur the development of managed care. It required employers with over 25 workers to make an HMO health care plan available and provided $375 million dollars in subsidies to create HMOs. After this legislation the numbers of HMOs and enrollees grew rapidly, as shown in Table 15.1. Although the number of plans rose and fell after the late 1980s, the number of enrollees has climbed steadily since the 1990s, to include 80.4 million Americans and 568 HMOs by 2000 (see Table 15.1). Preferred Provider Organizations (PPOs) are a less unified form of managed care that offers patients wider (though still limited) choices of physicians and hospitals at varying levels of costs reflecting the discounts providers are willing to give to attract patients. This form of managed care has also grown rapidly in recent years to overtake HMOs in both the number of organized entities and enrollees (see Table 15.1). One consequence of the HMO Act of 1973 and subsequent legislation was an increase in profit making in health care. Although for-profit hospitals remain a small minority of the hospital population in the United States, for-profit HMOs represent a substantial percentage of all HMOs. The 1997 Census of businesses in the United States identified 262 HMO medical centers subject to federal income tax and 510 HMO medical centers exempt from federal income taxes. Profit making in health care has concerned a number of health service researchers (Gray, 1983, 1991; Schlesinger, Gray, & Bradley, 1996) but has not informed health communication research to date. A number of the features of managed care organizations might be of interest to health communication researchers. First, managed care organizations (for example, HMOs, IPAs, PPOs) can be characterized by their existence in a triad of contractual arrangements (see Fig. 15.1). Consumers (or more specifically, their representatives in the form of employers or governments) purchase memberships in plans from plan administrations. Plan administrations may be operated by organizations that bear close resemblance to the federally chartered HMOs of the 1970s. Alternatively, they may be operated on a for-profit basis, or they may even be operated by private insurance corporations or government agencies. The key characteristic of consumers in managed care is that they are almost always members of a population, either employed persons (typically at large organizations) or beneficiaries of government-sponsored plans such as Medicare or Medicaid. The key characteristic of

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Plan Administration

Patient Populations

Providers

Figure 15.1 The Structure of Managed Care Communication. The diagram is similar to Mackintosh’s (1978, p. 38) which refers only to physicians, third parties in general, and resource flows, not plan administrations, populations, or contractual communication.

plan administrations is that they represent pure administrative structures. They arrange for the access of populations to health services and the access of providers to clients, but the plan administrations provide no direct services. The central characteristic of providers in these plans is that individual physicians, medical groups, hospitals, laboratories, and/or pharmacies have entered into an agreement with the plan administration on the basis of competitive bidding. Without the formal relationship of the provider to the plan, there would be no possibility for the provider to be reimbursed for the service provided to patients. Highly specific and binding contracts tie these three parties together. For the patient population, contracts specify with minute detail the nature of services and manner of their provision that the patient may request of the provider. For the plan, the contracts specify the obligations and duties of the plan toward both provider and patient. For the provider, the contracts specify not only what services may be reimbursed, but also the limits of referrals, hospital admissions, financial incentives, and causing some controversy, what the provider may or may not disclose to the patient about the contract. The contracts represent a set of structures for patient-provider communication that are specified beforehand. This overarching structure now dominates patient-provider communication in the United States. Little health communication research has recognized the pervasiveness and influence of these structures, although health services researchers have devoted increasing

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attention to them (for example, Gross & Budrys, 1991; Robinson, 1997, 1998; Scheffler, 1999). Several features of managed care plans are significant for health communication researchers. The stability of the patient-provider relationship is a staple of organized medicine’s view of good practice as well as communication researchers’ assumptions about the nature of the dyad. But, because the plans structure the patient-provider relationship as a contract, the relationship is predefined by the conditions of the contract, potentially threatening this stability. Patients may be unable to continue to see certain providers because the parties (providers, administrators, patients, or employers) may elect not to renew contracts. This was the case for 934,000 Medicare recipients dropped from managed care plans in 2000 (Cawley, Chernew, & McLaughlin, 2001). As a contract, the relationship can be bought and sold like a commodity. Thus, disruption in the patient-provider relationship can occur when plans fail due to market forces, as in the case of FPA Medical Management, a physicians management group that collapsed in 1998 leaving more than 400,000 patients without an arrangement for medical service (Brewster, Jackson, & Lesser, 2000). But disruption can also occur when the contracts are transferred, as in the case of the purchase of FHP by Aurora Health Plans in Milwaukee, Wisconsin, and the subsequent elimination of 11 physicians’ jobs (Trewyn, 2001). While the reorganization can be explained in business terms it nonetheless has consequences for the patient-provider relationship. The separation of technical (or clinical) control from administrative control in prepaid medical practices (Gross & Budrys, 1991) ultimately subjugates physicians’ control of their practices to administrators. This could decrease the attractiveness of medical careers and perhaps threaten quality of care. From an institutional perspective, managed care represents the rise of norms of efficiency and market values in what until recently was a sector defined by sacred intangible and untestable beliefs about the importance of the patient-provider relationship and public trust, precisely what Meyer and Rowan (1977) referred to as rational myths. Hospitals and physicians, largely in groups, are now brought under the logic of market efficiencies and the commodification of every aspect of the sector, from procedures to relationships (Lammers & Geist, 1997). The development of the field very much follows the pattern of institutionalization outlined by Lawrence, Winn, and Jennings (2001). Thus, we would expect the content, style, and nature of patient-provider communication to change as managed care develops and gradually comes to dominate a community. The September 11th attacks in New York City and Washington, D.C., the anthrax attacks, and the ensuing war on terrorism also represent a significant change force for health organizations. For example, the U.S. Department of Health and Human Services (2002, November) recently funded 42 ‘medical reserve corps units’ to respond in the event of a large-scale biological disease outbreak. First responder teams, disaster relief teams, ad hoc disaster management centers, and emergency rooms are some of the health organizations important during an actual outbreak. New government regulations represent institutional changes for the traditional health professions and traditional healthcare sites as physicians, nurses, and hospitals become the new front line in biodefense (Henderson, 1999). Pharmaceutical companies too face pressures to develop, produce, and store large quantities of antibiotics, vaccines, and antitoxins. These organizations gain new importance for scholars of health and organizational communication. For example, urgent risk communication, which until now has received scant attention from communication, scholars, may become much more relevant. And the problems of governmental organizations communicating clearly, rapidly, and effectively with the public as well as with networks of public and private organizations, take on a new urgency. As this handbook goes to press the effects of

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the U.S. war on terrorism are only beginning to emerge, but clearly bio-defense initiatives will be important for health and organizational communication scholars in the future. THEORIZING ORGANIZATIONS IN HEALTH SERVICES

In Kreps and Thornton’s (1992) widely used text, contextual features of health communication are described using a series of concentric circles to show how patient-provider communication is surrounded by organizational and societal factors. Similarly, the Health Belief Model (HBM) (Rosenstock, 1974) and the Behavioral Model of Health Services Use (Andersen, 1995) offer frameworks that suggest socially influenced patterns of health care use. But as Mattson (1999) pointed out, models like the HBM need much additional specification of their communication elements. Each of these models could also benefit from additional specification of the concepts involving the organization of health services (see Table 15.2 for an enumeration of such concepts). Occupational Identification

Writers in health communication have struggled for years with terms that are inclusive enough to acknowledge that physicians are in the minority among those mainstream professionals who see patients, while avoiding the thorny problem of identifying just what TABLE 15.2

Organizational Constructs Useful in Health Communication Construct

Concepts

Occupational identification

professionalism managerialism role identity employment status

Group context

membership boundaries leadership authority membership pools

Organizational context

size complexity formalization climate history

Institutional context

ownership control sector characteristics decision-making rights

Change processes

purposive structurational (destructuration) births, deaths, transformations growth

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distinguishes one caregiver from another. Problems with access to and costs of care have placed more and more registered nurses, physicians’ assistants, and nurse practitioners in front of patients. While many provide preliminary screening, in a number of settings, patients may not see a physician at all over a period of years. For example, nurse practitioners or physicians’ assistants instead of gynecologists often handle routine gynecological exams. Status distinctions among physicians may lead to differential outcomes in the experience of care for the provider that in turn might be expected to contribute to differences in the patients’ experiences. Patients in the United States have access to a wide range of specialists whose training and professional identity may be quite different from that of generalists. Practitioners work in increasingly complex organizations where managerial concerns become a part of the organizational culture (Barr, 1997). The financial pressures placed on providers increasingly put the patient in a room with an employee of an organization. Group Context

As group researchers have exited the laboratory and entered the field in search of more realistic group processes (Frey, 1994b), some new concepts have entered the language of group analysis that should be of particular use to health communication researchers. The key features of the bona fide group perspective include stable but permeable boundaries and interdependence with context (Putnam & Stohl, 1990). For example, Lammers and Krikorian (1997) applied the concept to surgical teams. They suggested that structural relationships among pools of potential members of any given surgical team could predict communication outcomes. Berteotti and Seibold (1994) raised questions about role coordination among hospice team members of differing status. Consider also the role of formal and emergent authority in health care groups. Given the increasingly interdisciplinary nature of health care teams, cross-disciplinary communication, authority, and interdependence could be vital. For example, the U.S. Agency for Healthcare Research and Quality has placed a special emphasis on medical errors in its requests for proposals; measurable medical error may be due to certain, specifiable group communication patterns (Berwick, Godfrey, & Roessner, 1991). Organizational Context

Health communication research routinely fails to control for standard organizational variables of size, complexity, formalization, climate, and history. Yet these are precisely the kinds of distinctions that are of concern to policymakers and stakeholders in other sectors. Barr (1997) argued persuasively that service quality is a function of organization size and complexity, and in turn affects organizational outcomes. Formalization, the extent to which organizational procedures are codified and have lawlike qualities, is today rampant in health organizations. Yet formalization itself is problematic. Hacker and Marmor (1999) contended that the term managed care (and many terms associated with it) “is a confused assemblage of market sloganeering, inspirational rhetoric, and managerial jargon that sadly reflects the more general state of discourse about American medical institutions” (p. 1033). They persuasively argued that the whole alphabet soup of HMO, PPO, MIP, EPO, POS, and the like are misleading, inaccurate, and confusing. They urge analysts to avoid using the industry labels for these managed care entities and to replace the jargon with more empirically descriptive terms. The climate of health organizations has been the subject of health communication investigations (Klingle, Burgoon, Afifi, & Callister,

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1995), but like much climate research, has not been tied to valued outcomes. Given the level of burnout among health care workers (Miller, Birkholt, Scott, & Stage, 1995), organizational attributes like size, complexity, formalization, climate, and history are critical to the success of health services (Aiken, Sochalski, & Lake, 1997). Institutional Context

Whereas organizational variables are often overlooked in health communication research, institutional variables are invisible. Institutions can be thought of best as macromorphic patterns of behavior, beliefs, and structures within which organizations have life and much dyadic communication can be taken for granted. Scott (1995) defined institutions as follows: “Institutions consist of cognitive, normative, and regulative structures and activities that provide stability and meaning to social behavior. Institutions are transported by various carriers—cultures, structures, and routines—and they operate at multiple levels of jurisdiction” (p. 33). Most writers on the subject of institutions in both sociology and economics will agree that regulation and control are defining characteristics of these large structures. As such, ownership rules, control, and decision-making rights that cut across organizations are institutional characteristics. Accreditation patterns in hospitals, unionization of nurses, and the distribution of rights regarding funding, categories of services, and instrumental choices are all shaped by institutional forces in health care. Organizational Change

Health organizations have participated in the waves of change brought on by popular management thinking, such as the Total Quality Management and Re-engineering Movements. Organizational communication scholars have offered perspectives that could improve efforts to accomplish change (Lewis & Seibold, 1998), but health communication scholars have not employed these ideas to understand how providers like physicians and nurses respond to planned changes. Labor studies researchers and nursing scholars, however, have begun to study the effects of planned organizational changes—like job redesign and hospital mergers—on the climate for patient care (Clark, Day, & Shea, 2000). Studies that include purposive organizational change could be employed usefully in health communication research. Scott, Ruef, Mendel, and Caronna (2000) employed structuration as a “master process” (p. 26) to understand how the profession of medicine was transformed in the 20th century from one with widespread autonomy to one where managerial rules govern. In a conceptual move that has relevance for health communication research, Scott Ruef, Mendel, and Caronna refer to changes underway in medical care today as “destructuration and restructuration” (p. 27). Lammers, Duggan, and Barbour (2001) considered the relationship of organizational type and managerial communication to physician satisfaction as part of a structuration process. Researchers may find applications of emerging perspectives in health communication research at the macro level. Although self-organizing systems theory (Contractor & Seibold, 1993) is aimed at explaining systems that are in states of disorder (a debatable claim in the case of U.S. health care systems), certain of its tenets apply. For example, supply and demand for health care seem linked in mutually causal ways that have always baffled economists (Feldstein, 1993). Complex Adaptive Systems theory seems applicable to problems of understanding the trillion-plus dollar health care system and efforts to reform it (Plesk, 2001).

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Finally, health communication research could also benefit from observing that the population of health organizations is changing from an ecological point of view (Aldrich, 1979; Hannan & Freeman, 1977). The population ecology perspective suggests that organizations themselves live in a dynamic environment ruled by ecological principles like births, deaths, and transformations (Aldrich & Fish, 1981). The most amazing example of organizational birth in the health arena is the medical group (not in existence at the beginning of the 20th century) that dominates medical practice today. An institutional perspective directs our attention to these macromorphic structures that influence behavior at the micromorphic level. CONCLUSION

In this chapter, we have identified an institutional approach to communication in health organizations. Throughout we have applied the institutional ideas including sectors, isomorphic forces, and rational myths to sort out the population of organizations we think of as health organizations. This approach can tie traditional patient-provider research to larger issues. The central idea has been context, but issues remain. First, we have not found in the health communication literature much development of ideas organizational communication scholars traditionally work with, such as structuration, communication climate, communication or decision making in groups, leadership, workplace democracy, dialogue, network studies, public goods, technologies and organizations, or organizational identification. Each of these areas could be applied to issues in health organizations. Second, we have accepted the patient-provider relationship as a central problem in health communication research, leaving off the population or mass audience as a legitimate focus for organizational health communication research. A shift in focus would favor more studies like Backer and Rogers’s (1993) work concerning the organizational issues associated with health communication campaigns. This shift could also be tied to an institutional approach and could draw schools of public health and the public health service into the framework. Variation in contexts should be introduced as a variable in health communication studies. Too many studies assume a hospital or physician’s office. The links between professionals and their changing status with the advent of managed care seems a promising area for further research. Changes over time in the context of patient-provider communication may also influence the validity and reliability of health communication studies. Certainly the institutional environment of health organizations has changed drastically in just the last 20 years (since the introduction of DRGs, for example). As of January 1, 2001, 933,687 Medicare enrollees (Ferris, 2000) were dropped from HMOs that claimed that federal reimbursements did not sufficiently cover the costs of care (LaTourette, 2001). Certainly disruptions in the continuity of care would influence the quality and tenor of individual health communication episodes. An institutional approach provides a framework in which we can consider both the microlevel interactions and issues in health care as well as the organizational environment of health services. For example, physician satisfaction is a personal issue that affects individual providers, but in the aggregate, it may be an expression of shifting macromorphic forces and arrangements. If, as we observed in our introduction, organizations are expressions of culturally valued ends, there may be few better places to study changes in our culture than in health organizations.

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U.S. Department of Health and Human Services (USDHHS). (2002). HSS announces creation of medical reserve corps units: Grants to 42 community groups will support new volunteer medical response teams. Retrieved November 1, 2002, from http://www.hhs.gov/ news/press/2002pres/20021101b.html. U.S. Security and Exchange Commission. (2000). Form 10-k for CIGNA Corporation. (Commission file number 1-8323). Washington, DC: U.S. Security and Exchange Commission. Williams, S., & Torrens, P. R. (1998). Introduction to health services (5th ed.). New York: Wiley Medical Publishing. Wolinsky, F., & Marder, W. (1985). The organization of medical practice and the practice of medicine. Ann Arbor, MI: Health Administration Press. Yost, A. J., & Serkey, J. M. (1999). Rule-makers who establish infection control standards. Nursing Clinics of North America, 34, 527–533. AUTHOR NOTE

We would like to thank Kathy Miller for her helpful comments on an earlier draft of this chapter.

16 Stress and Social Support in Health Care Organizations Julie Apker Western Michigan University

Eileen Berlin Ray Cleveland State University

Caregivers find themselves managing a host of demands that are often at odds with each other. They are expected to be quick but thorough, strong but emotionally accessible, always available but never tired, and honest but infallible. Understanding these demands may help people understand why caregivers communicate as they do. (du Pr´e, 2000, p. 93)

Stress and social support are topics that have interested organizational scholars and practitioners for decades. Researchers have investigated a variety of issues related to these subjects, ranging from identifying the communicative antecedents of burnout to determining the “bottom-line” outcomes of stress in areas such as reduced worker commitment and increased turnover to studying the messages and structures that may help employees cope with workplace stress and burnout. These various lines of scholarship reveal that stress, burnout, and social support are communicative processes that are central to our understanding of organizations and their members. Although research in stress and social support has a rich history, the vibrancy of ongoing scholarly activity in these areas highlights the importance of this topic for current and future research. In a 1987 review of the supportive communication and job stress literature, Ray observed several trends. First, the communication of social support had been conceptualized as a person’s accessibility to support or the available sources of support. Second, social support was conceptualized as a means for reducing uncertainty and increasing the recipient’s perception of personal control over the stressors. Third, social support was typically assessed from the recipient’s point of view. Regardless of the supporter’s intent, his or her behavior was only support if the recipient perceived it as such. Fourth, there was no consideration of negative, or dysfunctional, supportive communication. Finally, at the time

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of Ray’s (1987) review, research had focused on human service occupations with little acknowledgement or appreciation of the cultural or social context within which these jobs are embedded. The current chapter updates research on social support in healthcare organizations subsequent to the 1987 review and examines changes in the Ray identified trends. Over the past 15 years, we have witnessed massive changes in healthcare in the United States. It is critical to note these changes because it is impossible to discuss job stress without acknowledging their impact. Previous research on stress in healthcare organizations has often drawn an arbitrary boundary around the organization, giving only a passing nod to exigencies in the external environment. Past studies have also used samples primarily of nurses, nursing assistants, and doctors; other medical and nonmedical support staff have been virtually ignored. In this age of managed care, it is critical that every component of the healthcare organization system is recognized and examined if an suitably complex understanding of the relationship between job stress and supportive communication is to emerge. We have seen in other chapters of this handbook (e.g., Lammers et al., and Poole & Real) how the nature of healthcare and healthcare organizations has changed and continue to change. The pervasiveness of managed care and the increasing role of insurance carriers are only two related examples of the changes that have significantly influenced who gets healthcare and how it is provided. Previous work on stress and burnout among healthcare workers has focused on care providers and their communication with coworkers and/or supervisors. Some research has also included home/work conflict as a stressor, but most has remained focused on communication within the organization. In the past 15 years, however, there has been some shifting by communication scholars to grapple with the new complexities of healthcare and its impact on provider–patient interaction and organizational communication. Since 1987, research on communication and job stress has developed in several ways. Perhaps most noteworthy is the expansion of populations studied to include mental health professionals, social workers, occupational therapists, and physical therapists as well as continuing studies of physicians and nurses. Second, while broad categories of stressors are similar, the specifics that comprise them have changed. In this chapter, we first examine job stress due to 1) structural changes brought about by managed care; 2) role changes at interorganizational and interpersonal levels; 3) emotional labor; and 4) home/work conflict. We then discuss social support and how supportive communication may impact job stress in healthcare organizations. Finally, we consider implications for future research examining the relationship between job stress and social support. JOB STRESS IN THE HEALTHCARE PROFESSIONS

Healthcare work is inherently stressful. Care providers experience ongoing, lifechallenging health issues as they care for those who suffer from a variety of serious traumatic/acute or chronic health problems. Healthcare work seems to attract people who exhibit certain characteristics; they talk about wanting to make a difference in people’s lives and often see their career choice as a calling. They are aware of the intrinsic stress of healthcare work, at least cognitively. However, once in the field, caregivers are likely to experience additional stressors such as workload (underload and overload), role conflict, role ambiguity, scarce resources, understaffing, physical strain (e.g., lifting and moving patients), and a lack of participation in decision making (see Ford & Ellis, 1998). This stress may affect caregivers physically, behaviorally, and/or attitudinally. Increases in substance

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abuse, physical illness, relationship conflict, and psychological problems are not uncommon among healthcare workers and are costly to the organization in terms of higher absenteeism, turnover, or poor job performance. For patients, the impact of care provider job stress can be, literally, a matter of life and death. Preventable medical errors are the eighth most common cause of death in the United States, killing between 44,000 and 98,000 each year (Sexton, Thomas, & Helmreich, 2000). A study of surgery staff and intensive care unit staff found that poor communication and teamwork were frequent contributors to these errors, complicated by the fact that medical staff may deny their high stress levels or refuse to acknowledge their mistakes (Sexton et al., 2000). Healthcare providers’ stress also impacts patients’ level of satisfaction with their hospital stay, and patients who had more cynical nurses report less satisfaction with medical care and service (Leiter, Harvie, & Frizell, 1998). Within healthcare organizations, numerous stressors have been identified in various care occupations. Although there is some overlap, there are also some distinctive stressors within certain healthcare professions. In the following paragraphs, we highlight a few of the job stressors that appear to be most salient to particular caregiver professions. Occupational therapists may be at high risk for chronic stress because they are isolated from other healthcare professionals, a client base made up predominately of the disabled or elderly, and a need to justify their importance in the face of managed care. These stressors are exacerbated by a lack of positive feedback from supervisors, low pay, crowded work areas, heavy caseloads, and a lack of opportunity to move up the career ladder (Sweeney & Nichols, 1996). Mental health nurses have reported numerous stressors: inadequate staffing in the event of a dangerous situation; coping with changes in health service and hospital closures, and not being notified of changes before they take place; knowing that patients are getting inadequate care due to short staffing; lack of input to management about important changes; and low morale and poor organizational climate (Fagin et al., 1996). Hospital staff nurses have identified numerous job stressors including work overload, patient death and separation, the emotional demands brought about by patients and their families, poor communication with coworkers, and low social support (Hillhouse & Adler, 1997). Specifically, nurses who perceived low stressors, high social support, and high patient contact reported low burnout, while nurses who experienced patient death and suffering, conflict with other doctors and nurses, low social support on their unit, fewer patients, and moderate stress levels reported high burnout (Hillhouse & Adler, 1997). Stressors also appear to vary depending on the degree of status differences between the interactants. For example, conflict with peers may be easier to resolve and less threatening, while asymmetrical relationship (e.g., nurse-doctor) conflict, combined with heavy work and patient loads, may magnify nurses’ stress (Lee & Ashforth, 1996). Nurses also reported that role ambiguity, role conflict, workload, and daily pressure were stressors that affected their work lives (Ford & Ellis, 1998; Lee & Ashforth, 1996). Ford and Ellis (1998) note: Technological advances, changes in healthcare delivery structures, and continued pressure for cost and care accountability all have contributed to a work environment in which nurses increasingly feel understaffed, overworked, stressed, and uncertain. In addition, nurses continue to cope with the stresses associated with caregiving to patients and their families who are facing difficult, often life-threatening circumstances. (p. 38)

For medical residents, stress has been related to workload, with negative relationships reported between number of hours worked and quality of care as well as between quality

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of sleep and quality of care (Firth-Cozens & Moss, 1998). HIV/AIDS healthcare workers identified stressors including confrontation with death and dying, problems of interacting with clients (Kleiber, Enzmann, & Gusy, 1994), emotional overload, lack of support for staff, and lack of training (Guinan, McCallum, Painter, Dykes, & Gold,1991). In addition, past research suggests that nondirect care providers working in healthcare organizations are not immune to experiencing aspects of job stress. For instance, at the administrative level, among directors, associate medical directors, and chiefs of staff at VA centers, burnout was associated with both age and tenure. Further, those with intermediate or high burnout levels reported less role clarity, more role conflict, fewer resources, and low levels of job satisfaction (Mirvis, Graney, & Kilpatrick, 1999). This line of scholarship, then, illustrates that healthcare professionals experience many different kinds of job stress, some of which are tied to particular occupational characteristics, skills, or work settings. However, following the arguments posed by Ray and Miller (1990), it is important to avoid solely taking a microlevel perspective when examining workplace stressors and burnout in healthcare organizations. Thus, we next address the greater, more overarching sources of job stress that affect healthcare professionals regardless of their particular medical specialty or occupation. SOURCES OF JOB STRESS

Ray and Miller (1990) advocate adopting a systems perspective that highlights the critical nature of the interdependencies between all components within the organization and their impact on the provision of care. These authors further argue that when the system works efficiently and effectively, it remains in balance. However, if this balance is disrupted, the outcome is potentially dangerous for both care providers and recipients. The stress resulting from structural changes is likely to spill over to the interpersonal relationships between caregivers, subsequently affecting the quality of care they provide. In this section, we first discuss the structural change that has had the most significant impact on healthcare, managed care. Managed Care Stressors It has become unbearable and I plan to quit medicine. So many stupid things compromise my patient care that I’m ready to practically give my practice away. . . . When I see a Medicare patient, 110,000 pages of regulations come between us. . . . Keeping up with medicine is tough enough, but I’m also expected to read the Federal Register every day looking for new rules from the bureaucrats. (Physician after being asked how the medical profession has changed; Laster, 2001, p. B3)

Probably the structural change that has most dramatically transformed the nature of healthcare in the United States has been managed care. In response to dwindling economic resources, rising healthcare costs, and increased competition, growing numbers of healthcare organizations are restructuring the work roles, tasks, and environments of their employees (Geist & Hardesty, 1992; Saxton & Leaman, 1998). Popular cost-cutting measures include increasing workers’ administrative and clinical workload, downsizing staff, emphasizing “team” care, and redefining conventional caregiver roles (Apker, 2001; Browne & Biancolillo, 1996; Mayer & Rushton, 1998). These cost management tactics have had an impact on the communication among and between healthcare workers.

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Research by Miller and her colleagues (Apker, 2001; K. I. Miller, 1998; K. I. Miller & Apker, 2002; K. I. Miller, Joseph, & Apker, 2000) indicates that caregiver interactions on the “front lines” of managed care have changed interpersonal, group, and organizational communication dynamics. For example, Miller and Apker (2002) found that traditional nursing communication—characterized by education and empathy—has been extended in the managed care era to include processes such as professional collaboration and change management. RNs who were direct care providers in healthcare organizations affected by managed care initiatives, desired more and better quality communication from administrators and managers regarding managed care (Miller et al., 2000). Doctors involved in managed care contracts reported problematic communication with managed care organizations and reduced job satisfaction, particularly in the area of clinical autonomy (Lammers & Duggan, 2002). Lammers and Geist (1997) identified numerous ways in which managed care has changed the relationship between providers and patients. They argue that as “health consumers,” the public is forced to make decisions about coverage and providers before they need healthcare. It is now up to individuals to gather information, develop criteria, and choose medical services and providers, usually within a narrow set of options. Patients are more dehumanized—reduced to an illness within a category of treatments, often with little continuity of care providers. Marketing is targeted to our shared aggregate characteristics, not our individual variations. Costs have shifted from posttreatment payment to prepayment as determined by insurance companies and managed care organizations. People who don’t meet specific criteria (i.e., below poverty level for Medicaid, not covered by Medicare, or work in small organizations not required to provide health coverage) end up without coverage and must either buy their own insurance or get treatment in emergency rooms. As a result of these changes, Lammers and Geist (1997) further argue that communication within the provider–patient relationship has changed in numerous ways. For example, communication with physicians who adhere to their managed care organization’s rules is likely to become more formal, and potentially adversarial; but for doctors who attempt to bypass these regulations, communication is likely to become more conspiratorial. Either way, these additional stressors have changed the nature of the care provider’s role and its subsequent impact on patient care. Thus, managed care appears to exert powerful pressures on the work lives and relationships among healthcare professionals and their relationships with patients. Such structural changes in healthcare delivery may become manifest in healthcare workers’ experience of stress. In addition to the pervasive structural changes brought about by managed care, caregivers face other individual and organizational job factors that can bring about feelings of stress. Next, we discuss three types of stressors: 1) interorganizational and interpersonal role stress; 2) emotional labor; and 3) home/work conflict. Role Stress

Role stress, including its relationship to various negative outcomes, gained notoriety because of the early work of R. L. Kahn and colleagues (R. L. Kahn, Wolfe, Quinn, Snoek, & Rosenthal, 1964), and it has been the subject of much research in the decades since. Role has been defined as the behavioral expectations of individuals who occupy a particular position. Communication is crucial for both defining and enacting the role (Miller et al., 2000). Role stress has traditionally been divided into role conflict and role ambiguity. Role conflict refers to a person having to engage in two or more incompatible roles simultaneously. Role ambiguity refers to a lack of clarity regarding the definition

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and expectations for a particular role. In healthcare organizations, research suggests that worker role stress may arise at both interorganizational and interpersonal levels. We begin by taking a macro-approach to role stress by examining relationships between caregiving organizations, especially those interorganizational relationships that have emerged and flourished in the managed care era. We will then consider the interpersonal factors that may contribute to worker stress. Interorganizational Role Stress. Perhaps the most visible way in which we see interorganizational role stress is when experts in healthcare find themselves fighting regulations put in place by those who view healthcare from a business perspective. Unfortunately, interorganizational role stress affects care providers at all levels, and, in some cases, results in conflict about how to balance “bottom-line” profit concerns with appropriate care coordination. Often, the outcome of these problems is heightened provider stress that subsequently spills over into patient care. For instance, cost containment strategies result in outside organizations dictating the length of hospital stays, coverage of treatments, and care. This leads to frustration, as “nurses often feel that the dismantling of ‘hard won,’ high-quality patient care merely in the interest of cost containment and constraining resource availability is completely unacceptable” (Porter-O’Grady, 1998, p. 262). Doctors, too, are affected by this type of interorganizational role stressor. Research conducted by Post (1997) of stress and coping among family physicians indicates that doctors consider negotiating with third-party managed care or government systems over the care to be provided to the patient to be a major job frustration. Similar interorganizational stressors have resulted from the institution of diagnosis related groups (DRGs). DRGs were designed to contain costs for Medicare patients. The DRG system was implemented in 1984 and was set up to “control cost increases in Medicare, to achieve some predictability over [Social Security] expenditures, and ultimately to avoid the bankruptcy—perhaps even the destruction—of this program for helping the nation’s elderly receive adequate healthcare” (Morreim, 1985, p. 30). DRGs are part of a prospective system in which funding agencies set in advance what they will pay hospitals to care for specific illnesses before the care is needed for a specific patient (Birnenbaum, 1997). The rate is based on the average cost of providing treatment for anyone with that particular illness. If costs exceed the reimbursement rate, hospitals will lose money, but if costs are consistently below the rate, hospitals benefit by sharing in the profit. Thus, there is an incentive for hospitals to stay at, or below, the reimbursement level. The impact that this system, and others like it, has on the entire organization is pervasive (Sultz & Young, 1997). Medicare patients are assigned a DRG when they enter the hospital, and subsequent care is determined based on this diagnosis. As Geist and Hardesty (1992) noted, “Under DRGs, the premise that quality patient care will be delivered regardless of cost loses ground to cost containment” (p. 238). The implications for communication are also pervasive (du Pr´e, 2000). Not only is care streamlined and work roles redefined in a managed care environment, but communication between patients and care providers is also impacted (Post, 1997). For example, explaining how DRGs will impact a patient’s care is considered “dirty work,” work that no one wants to perform (Hughes, 1971), and usually falls to the nurses. Thus, those providers having the most frequent and intense contact with patients and their families, and usually the strongest interpersonal relationships, are faced with explaining the intricacies of the managed care system to the patient and family (Finkelman, 2001). Certainly, the influence of managed care has been visible in a variety of healthcare contexts, but perhaps it is most pronounced in inpatient settings such as hospitals, which have

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traditionally been the most expensive component of healthcare delivery (Sultz & Young, 1997). Here, the cost management strategies described above have been accompanied by increased patient acuity levels and mandated decreases in patient lengths of stay. These pressures are further complicated when hospitals lack the infrastructure and resources to help their employees cope with and respond to managed care (K. I. Miller et al., 2000). It is not surprising, then, that hospital-based healthcare workers report that managed care has affected their professional practice as well as led to rising levels of job stress and frustration. For example, RNs blamed managed care for increasing their workload and heightening pressure to speed up patient care at the expense of care quality (Apker, 2001), while nurse practitioners saw managed care as a source of uncertainty and confusion in their jobs (Cohen, Mason, Arsenie, Sargese, & Needham, 1998). Murphy, Ruch, Pepicello, and Murphy (1997) report that the complexities of working in a managed care system caused reduced morale, decreased job satisfaction, and higher levels of stress. In professions such as nursing, which are traditionally challenged by staff burnout and turnover, recruiting personnel and maintaining care quality has become increasingly difficult for healthcare organizations (Buiser, 2000; Miller & Apker, 2002). Clinical nurse specialists and nurse practitioners report that managed care poses potential threats to professional security and care quality (Harrison, 1999) and is associated with workplace stressors such as workload demands, encroachment on professional practice, and administrative red tape. Managed care has also influenced the stress experienced by physicians, particularly in the areas of control over work and collegial and patient relationships. A key characteristic of the managed care era is that third-party payers exert influence over clinical decisionmaking and healthcare delivery (Saxton & Leaman, 1998; Wilkerson, Devers, & Given, 1997). Physicians report that interference by nonphysicians such as insurers was a source of stress that led to feelings of decreased professional autonomy and, ultimately, reduced job satisfaction (Simpson & Grant, 1991). As one physician notes, “managed care companies acknowledge they push for the least intensive setting possible for care and that multiyear outpatient [mental health] therapy is generally insurance history” (Levick, 1998, p. A1). In research examining the relationship between managed care, communication problems, and physician satisfaction, Lammers and Duggan (2002) found that for some doctors, contact with managed care organizations was a factor in predicting communication problems that led to lower satisfaction. In addition, a number of physicians also reported worrying about the stress-related aspects of their jobs created by managed care (e.g., more workload, rising patient volume, etc.) and the effects of these stressors on their relationships with colleagues and patients. In a similar study, doctors reported dissatisfaction with how managed care has intensified demands on their productivity, cost-containment, and case mix (McMurray et al., 1997). In another study, doctors believed that managed care has contributed to their job stress by placing more pressure on duties such as charting, completing paperwork, and complying with constantly changing regulations (Post, 1997). Interpersonal Role Stress. Role stress related to interpersonal relationships is another common source of stress for healthcare professionals. As mentioned earlier, many organizational aspects of managed care have significantly affected caregivers on an interpersonal level, particularly those who work directly at the patient’s bedside. For example, hospital RNs report feeling more stress as they care for more highly acute patients (Letvak, 2001) who must be the “sickest of the sick” before being admitted (Apker, 2001). In this line of research, work by Miller and her colleagues (K. I. Miller, 1998; K. I. Miller & Apker, 2002; K. I. Miller et al., 2000) and others (Buiser, 2000; Harrison 1999; Murphy et al., 1997) suggests that nurses have new role sets in a managed care environment that

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involve more (and increasingly complex) responsibilities. Duties such as care coordination, supervision, and case management now demand that nurses interact in new ways with traditional coworker groups such as physicians and nursing aides and extenders. Now more than ever, RNs must communicate with allied health personnel and third-party payors as part of their nursing roles. This research reveals that managed care requires new communicative skills and relationships of nurses that may lead to rising stress in a profession already characterized by burnout and turnover (K. I. Miller & Apker, 2002). As Porter-O’Grady (1998) observed, “It is disheartening to know that the focus of healthcare service is changing when the personal evidence available to nurses suggests that the patient in the bed still has a set of needs and demands that must be met, regardless of the degree of shift toward outpatient care” (p. 262). Nurses are increasingly expected to perform traditional bedside care in addition to conducting administrative duties (e.g., documentation, answering phones, admitting new patients, etc.) and managing unlicensed staff (Apker, 2001). The struggle to balance clinical and nonclinical work roles is not without consequences, as nurses often report greater job stress, less personal accomplishment, and reduced time to spend with patients (Murphy et al., 1997; Harrison, 1999). Furthermore, research by K. I. Miller et al. (2000) indicates that nurses who attempt to negotiate traditional clinical responsibilities with new work roles, such as case manager and discharge planner, experience ambiguity in the process of role development. Interestingly, research results were mixed; some RNs reported that job uncertainty was a significant source of stress and strain while other nurses indicated that their role ambiguity was source of empowerment and creativity (K. I. Miller et al., 2000). Other empirical work reveals that healthcare professionals may experience stress related to role conflict even when their jobs are purposefully redesigned to reduce role-related stressors. In the case of a hospital work-redesign program—implemented to enhance nurse case managers’ quality of work life—job structuring changes resulted in higher levels of role conflict and ambiguity in ways that increased nurses’ job stress (Tonges, 1998). Work stress related to role conflict can also have negative physical consequences for nurses. For instance, in one study, nurses who reported work stress perceived more problematic physical symptoms and believed they were less healthy (Douglas, Meleis, & Paul, 1997). The stress accompanying the balance of multiple role demands also affects physicians who are taking on more administrative duties beyond providing direct patient care (de Jonge, Mulder, & Nijhuis, 1999; K. I. Miller & Ryan, 2001). For example, research suggests that physicians’ role conflict, combined with the loss of clinical autonomy, results in reduced job satisfaction (McMurray et al., 1997; Simpson & Grant, 1991). Experiencing role-related conflict also affects those employed in allied health and support staff positions. A study of role conflict among physical therapists found that therapists who perceived incompatible role demands from patients and coworkers reported higher levels of role stress and diminished emotional and physical well-being (Deckard & Present, 1989). Similarly, social workers reported significant role stress and conflict as they balanced relationships with patients, the patients’ families, and other caregivers (Seifert, Jayaratne, & Chess, 1991). Healthcare employees in non-direct-care jobs are also not immune from the effects of role stress. A study of non-direct-care professionals working in a retirement center, for example, found that food service, housekeeping, and administrative workers experienced role stress similar to their direct-care counterparts (Miller, Zook, & Ellis, 1989). In sum, then, although some scholars warn against spreading caregivers too thinly in times of increased patient acuity and reduced patient lengths of stay (Tillman, Salyer,

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Corley, & Mark, 1997), today’s healthcare workers serve increasing numbers of patients and, in the process of delivering medical care, they perform more (and more varied) tasks (Murphy et al., 1997). As health organizations downsize personnel and restructure job tasks, healthcare professionals may be in positions where they experience multiple—and potentially conflicting—roles. And, in addition to the actual job characteristics of their role, care providers are expected to present a certain front when enacting their role. This enactment, through emotional labor, may, in fact, act as an additional stressor, as discussed in the next section of this chapter. Emotional Labor

Emotional labor refers to “the management of feelings to create a publicly observable facial and bodily display” that is “sold for a wage” (Hochschild, 1983, p. 7). According to Hochschild (1983), workers must “induce or suppress feeling in order to sustain the outward countenance that produces the proper state of mind in others” (p. 7). Emotional labor is particularly relevant to service occupations (e.g., flight attendants, bill collectors, fast food workers) in which displaying socially desired emotions is a part of the service transaction (Ashforth & Humphrey, 1993; Wharton & Erickson, 1993). There has been some discussion of emotional labor in human service contexts, with K. I. Miller, Stiff, and Ellis (1988) differentiating between those who are able to maintain “empathic concern” (feeling for the other) versus “emotional contagion” (feeling with, or parallel to, the other). While empathic concern is more likely to have positive outcomes, emotional contagion is more likely to result in burnout. In the context of healthcare organizations, the notion of emotional labor is certainly applicable to caregivers because much of their communication involves affective content as they provide medical services to patients and their families. Research reviewed here indicates that emotional labor may be, in fact, characterized by numerous pros and cons for healthcare professionals. For example, healthcare workers may perform emotional labor to potentially reduce workplace stress and burnout brought about by the highly emotional circumstances that often characterize medical settings (Putnam & Mumby, 1993). Studies have also shown that caregivers may use emotional labor strategies to achieve a variety of instrumental tasks. O’Brien’s (1994) study of RNs employed in a variety of healthcare contexts echoes these findings by illustrating that caregivers labor emotionally in their efforts to persuade patients to adopt healthy lifestyles and behaviors. Findings from Sass’s (2000) ethnographic account of nursing home caregivers reveal that staff members display a wide range of emotional expressions in order to achieve a variety of goals and functions at work. Sass notes that the outcomes of caregivers’ emotional labor include information transfer, task achievement, relational definition, compliance gaining, and emotion management. In a case analysis of healthcare personnel working in a cardiac care center, Morgan and Krone (2001) found that caregivers used established organizational rules regarding emotional labor to perform scripted work roles and necessary job activities. Healthcare staff tended to use professional emotional displays to gain adherence from uncooperative patients. From these studies, it appears that emotional labor has a certain degree of utility for buffering and protecting healthcare professionals from work-related stressors. However, on the opposite end of the spectrum, other scholars note that emotional labor can be a significant source of stress and burnout for those working in service industries (Ashforth & Humphrey, 1993; Rafaeli & Sutton, 1987, 1989, 1991), especially those employed in caregiving professions (Kahn, 1993). Healthcare workers are often forced to

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deal with competing professional, organizational, and personal goals. Not only must they manage their emotions when caring for patients but when interacting with families, doctors, coworkers, and various support staff. Within healthcare organizations, the efficiency of interdependent action among the various staff and departments, coupled with juggling symmetrical and asymmetrical roles, requires careful management of emotions to provide the best care possible. In addition to these ongoing exigencies, workers must maintain a positive face even when forced into a double bind by their employer. For example, trying to persuade a patient that a less expensive treatment (which happens to be covered by managed care) is preferable to the more expensive (but not covered) treatment requires substantial presentation and persuasion skills. Thus, in today’s healthcare organizations, the labor of managing emotions takes place between and within several intra- and interorganizational levels. Juggling these emotions is likely to exacerbate other stressors and increase levels of burnout. In the realm of medical and nursing education, for instance, studies of residents and students highlight the reality that emotion management is an unspoken topic. Thus, healthcare professionals-in-training must learn emotional labor strategies through unspoken rules and trial-and-error processes (Hafferty, 1988; Smith & Kleinman, 1989; Smith, 1992). According to Hafferty (1988), medical training such as cadaver labs are forums in which students and residents learn either to enact coping mechanisms such as displaying detached concern or suffer ridicule and isolation from their peers and supervisors. Hafferty argues that this type of emotional socialization promotes “maladaptive coping strategies in clinical settings” which may negatively affect the well-being of both physicians and their patients (p. 354). Smith and Kleinman (1989) found that medical residents and students informally learned the affective neutrality from their more experienced peers and supervisors, revealing that medical education taught emotional labor strategies that led to problematic physician–patient communicative behaviors such as depersonalizing, blaming, and joking. Other research shows that student nurses were not taught the value of emotional labor in caregiving nor how to give emotional care without burning themselves out. In addition, these nurses suppressed their own feelings in order to care for patients, often to the detriment of their own emotional health (Smith, 1992). Researchers argue that healthcare professionals do not leave behind the job stressors and burnout associated with emotional labor once they complete their medical training. For example, Miller, Birkholt, Scott, and Stage (1995) found that human service workers experienced job stress and burnout as they engaged in emotional labor behaviors. Meyerson (1994) found that revealing emotions that conflicted with traditional caregiver role expectations (e.g., objectivity, neutrality, and rationality) resulted in increasing incidents of stress and burnout suffered by healthcare personnel. Morgan and Krone (2001) argue that the limits healthcare professionals place on their emotions may have potentially negative effects in terms of workplace stress and burnout. Similarly, Henderson (2001) found that although some nurses detached themselves from patients to safeguard their own emotional health, they did so in ways that minimized the feelings and emotions that may have fostered more effective ways to cope with stress. These authors further conclude that healthcare organizations should be encouraged to increase workers’ awareness and expression of emotions in order to reduce potential job-related stressors. It is unrealistic, however, to suggest that job stressors are confined to healthcare organizations. Stress impacts, and is impacted by, life within and outside the workplace, often resulting in conflict between the home and work spheres. We now address and discuss these tensions.

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Home/Work Conflict

Over the past 15 years, there has been an increase in research on the impact of home/work role conflict on healthcare providers. So far, the results of this research have been contradictory. Role conflict between work and child or elder care has become a concern as many parents find themselves members of the “sandwich generation,” caught between simultaneously caring for their children and their aging parents. These individuals (who are often working mothers) report high levels of stress from their multiple caregiving roles (Letvak, 2001). Others, such as single parents, must juggle their work and home responsibilities, a difficult task in the best of circumstances. For example, one study of nursing aides in a nursing home (Ray & Miller, 1994), found that those with children, regardless of how few or many, reported more stress. In addition, aides who were cohabitating reported the most stress, more than those who were either married or single. Existing empirical research indicates that balancing home and work responsibilities may lead to negative outcomes among healthcare professionals. For example, Decker (1997) found that job/nonjob conflict such as work interference in family life was a significant contributor to nurses’ feelings of stress. A study of nurse executives’ perceptions of home/work conflict in the medical occupations further suggests that juggling the needs of work and home are particularly stressful for female healthcare workers and may be important predictors of burnout (Bormann, 1993). In a study of nurses, Bacharach (1991) found that work-based role conflict was an important antecedent to work–home conflict, observing that work-based role conflict spilled over into work–home conflict, leading to greater burnout. This argument was supported by Aston and Lavery (1993), who reported a negative relationship between coworker support and quality of life, suggesting that conflict at work may strain relationships with spouses. D. Miller and Gilles’ (1996) research on the work/home stress experienced by oncology and HIV health staff also indicated that work stress negatively affected workers’ domestic and social lives, particularly in regard to relationships with partners. On the other side, however, Chapell and Novak (1992) found that talking to family about work problems significantly reduced stress of nursing assistants in nursing homes, while support from family and friends buffered burnout. A study of Hong Kong public health nurses found that prioritizing family and work tasks, having domestic maids and/or relatives to perform household chores, and strong spousal support helped reduce nurses’ home and work conflict (Shiu, 1998). In Mexico, nurses with greater work, maternal, and spousal role integration reported fewer physical symptoms related to work stress, while those with more spousal and maternal stress perceived themselves as less healthy (Douglas et al., 1997). Physicians also find themselves caught in home/work role conflict. Although women comprise about 45% of medical students, they are still disproportionately in the lowerstatus, lower-pay medical specialties such as family medicine and internal medicine. These women are faced with two major decisions. The first is whether they are willing to put in the long, intense years necessary to reach the top tier of their profession (i.e., surgery, neurology, orthopedics). The implications of this decision are clear; aiming for this type of career will require a level of commitment not conducive to maintaining personal relationships or raising children. However, even female physicians in other specialties often find that they are not experiencing the career they originally had in mind. Instead, many arrange to work less and have more flexible hours. One study, for example, found that 25% of female doctors surveyed said they worked less than 40 hours per week, compared to 12% of male doctors. Seventeen percent of female doctors said they worked 30 hours per week or less,

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while only 8% of male doctors worked this little (Steinhauer, 1999). Some researchers suggest that that the principal sources of stress for women doctors are conflict between personal life and work (Bynoe, 1994) and being torn between professional duties and family responsibilities (Stewart et al., 2000). Relatedly, in a study conducted by McMurray et al. (1997), female doctors identified balancing work and family commitments as a greater determinant of job satisfaction than their male counterparts. Certainly, it is important for healthcare organizations to understand the causes and consequences of stress in the workplace in order to avoid outcomes such as increased worker turnover, reduced productivity, and rising absenteeism. For communication scholars, though, a primary focus of job stress research has been to go beyond the causes of stress and to consider the role of social support in reducing stress and influencing burnout and turnover (e.g., Tai, Bame, & Robinson, 1998). In the following section, we discuss how supportive communication may function, or dysfunction, as a buffer to job stress in healthcare organizations. SUPPORTIVE COMMUNICATION It is ironic that an organization dedicated to restoring health and promoting well-being often is detrimental to the health and well-being of the people working there. (Dye, 1985, p. 3)

Kahn (1993) argued that primary caregivers (e.g., nurses, physicians, social workers) are often the individuals who require the greatest caregiving themselves because the nature of their jobs encourages them to provide substantial emotional resources to others. Unfortunately, in the absence of supportive communication from their coworkers and supervisors, caregivers own emotional resources may be depleted in ways that place them at greater risk of burnout. In their 1987 book, Communicating Social Support, Albrecht and Adelman conceptualized supportive communication as interaction that reduces one’s perceptions of uncertainty and helps the individual develop a sense of control over stressful circumstances. Albrecht and Adelman (1987) also argue that people cope best when they feel actively involved and well informed. To begin our discussion, we turn our attention to a specific consideration of the many functions of supportive communication within healthcare organizations. Functions of Supportive Communication

Uncertainty is a significant component of the illness experience, as individuals struggle to make sense of the physical, social, emotional, and psychological signs that are associated with disease (Radley, 1994). As a way of coping with the stress related to illness, supportive communication functions to reduce uncertainty, subsequently increasing the person’s perception of personal control. Thus, it is argued that people who receive social support will experience less uncertainty regarding illness, and consequently, they are better able to cope with the stressors that often accompany ill health (du Pr´e, 2000). However, rather than support reducing uncertainty, other scholars argue that it is more likely that support can help us to manage our uncertainty. According to Babrow and colleagues (Babrow, Hines, & Kasch, 2000; Babrow, Kasch, & Ford, 1998; Ford, Babrow, & Stohl, 1996), the theory of problematic integration provides a useful framework for understanding how supportive communication enables people to manage uncertainty in health and illness situations. Problematic integration theory is a general perspective of communication that describes how people understand and form evaluations of complex,

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ambiguous, and conflicting information (Babrow, 1992, 1995). In circumstances of illness, Babrow et al. (2000) argue that the equilibrium and predictability of day-to-day living is disrupted, forcing individuals to redefine their identities. Stress increases as a result. These authors further argue that it is critical to determine the probability of certain outcomes and evaluate their desirability. People try to integrate desirable outcomes with high probabilities. How the uncertainty is managed, whether it is reduced, maintained, or increased, depends on the assessment of the support recipient, the situation, and the use of appropriate communication skills (Babrow et al., 2000). In addition to this shift in the conceptual framework for the supportive communication– stress relationship, communication research has continued to focus on two levels. One approach has been at the individual level, where the emphasis is on recipient perceptions of support or categories of support. Previous research on social support has made a significant contribution in linking workplace phenomena with healthcare issues. Social support has been established as a coping mechanism or as a buffer of workplace stress and burnout (e.g., Miller, Ellis, Zook, & Lyles, 1990; Ray, 1991; Ray & Miller, 1991) and has been linked to workplace role ambiguity (Ray & Miller, 1991; Zimmermann & Applegate, 1994). The second approach has been at the macro level, examining supportive ties within a network analytic framework (Ray, 1991). This research has primarily used perceptual data. Other research suggests additional approaches to further explicate how supportive communication is interactively constructed and may play a role in the stress and burnout experienced by healthcare workers. Zimmermann and Applegate (1994), for example, suggest a message-centered approach to social support. This approach focuses on “actual supportive strategies and practices produced by people” (p. 53). In other words, social support is viewed as an interactional accomplishment with an emphasis on how it is strategically created in talk. These authors further suggest examining supportive messages through organizational storytelling, facework, and comforting behaviors. Miller and Ray (1994) discuss ways to identify supportive messages and their meaning among organizational members. At the individual level, they suggest adapting the memorable message concept (Knapp, Stohl, & Reardon, 1981) to identify specific supportive and unsupportive messages. At the macro level, Miller and Ray (1994) suggest investigating how organizational members are linked through semantic networks, where linkages are not based on interaction patterns but on shared meaning and interpretation. These methods were combined in a study of nursing home assistants and, although preliminary, the findings from this study reinforced the potential utility of this conceptualization and methodology. Sources of Support

At the interpersonal level, supportive communication can occur between and among all levels in healthcare organizations. Outside the organization, support may come from friends, spouses, partners, family members, and even acquaintances. However, coworkers may have the benefit of shared knowledge, context, and experiences (Ray, 1987). Lee and Ashforth (1996) highlight the importance of coworker social support in research which suggests that workers’ experience of emotional and physical strain is related to poor social support in their work environment. In a study of the relational characteristics of supportive messages among nursing professionals, Metts, Geist, and Gray (1994) found that work relationships offered greater tangible assistance (e.g., providing needed goods and services) than nonwork relationships, and emotional support offered during work episodes was more effective than when it was offered outside of work settings.

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Researchers specially studying healthcare workers have identified the importance of support from coworkers, particularly peers and supervisors, as coping mechanisms for job-related stress (Ellis & Miller, 1993; Miller et al., 1990; Ray & Miller, 1990, 1994). For example, in a study of nurses, Miller et al. (1989) found that coworker support lessened nurses’ experience of burnout by reducing their emotional exhaustion and depersonalization, and supervisory support reduced nurses’ depersonalization. In their study of supportive and nonsupportive messages communicated among nurses, Ford and Ellis (1998) note that “RNs as peers and nursing supervisors as superiors continue to be a reliable source of organizational support for nurses under stress” (p. 53). Relatedly, research regarding issues such as assertiveness, personal control, and participation in decision-making also shows that such factors are important in creating a supportive communication environment for healthcare workers. Ellis and Miller (1993) found that nurse assertiveness and participation in decision-making with physician colleagues was important in increasing RNs’ feelings of personal control which, in turn, reduced perceptions of burnout. Among social workers, Jayaratne, Himle, & Chess (1988) found coworker support significantly mediated the relationship between the stressors of role ambiguity and role conflict and the burnout characteristics of depersonalization and emotional exhaustion. They also found that supervisor support was not helpful in reducing burnout. Russell, Altmaier, and Van Valzen’s (1987) findings reinforce the importance of “social integration” among coworkers as a mediator of emotional exhaustion and depersonalization. For nurse manager–staff nurse relationships, supervisors who used a rhetorical message design approach (one that is designed to build consensus and harmony) experienced the highest levels of relational support and lowest levels of burnout (Peterson & Albrecht, 1996). Thomas and Ganster’s (1995) study of work-family role conflict among healthcare professionals found that supervisor behaviors that were seen as supportive of employees’ nonwork demands were instrumental in reducing worker stress and strain. While this line of research has underscored the importance of social support, it has focused on recipients’ perceptions of accessible and available support or on characteristics of ongoing support networks (Miller & Ray, 1994). What has typically not been considered are actual support messages and their shared meaning between support providers and recipients. In addition to emotional support, managers and administrators can provide instrumental and informational support by implementing organizational structures and policies that help workers minimize and cope with job-related stressors. For example, organizational programs such as flexible scheduling practices increased healthcare workers’ perceptions of control over work, and reduced the negative physical and mental health outcomes typically associated with stress and strain (Thomas & Ganster, 1995). Other studies have shown that training programs can be effective in teaching healthcare workers stress reduction and coping skills and can be helpful in improving levels of burnout (Lees & Ellis, 1990; Rowe, 1999). An organizational environment that promotes social support is also important. A study conducted by Hullet, McMilan, and Rogan (2000) found that healthcare workers in a nursing home felt higher levels of personal accomplishment when they perceived their organizational culture valued and rewarded supportive communication among staff members and between workers and patients. It is clear, then, that supportive communication has beneficial effects on support recipients. We generally assume that supportive messages are given with the best of intentions. However, sometimes what appears to be support is actually masking a hidden agenda. This is more likely to be the case in hierarchical organizations or when there are scarce resources, criteria that fit many healthcare organizations. In the next section, we consider how supportive communication may, in fact, be dysfunctional.

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Dysfunctions of Supportive Communication Much of what gets labeled “support” may be in reality, strategic manipulation on the part of those with power to maintain their position and to secure the status quo by slipping their hidden agendas on the coattails of ostensibly supportive communication. (Ray, 1993, p. 107)

As the quotation above suggests, sometimes what appears to be support may actually be a stressor. Ray observed that within the organizational context, there are “relationships embedded in differing levels of power, which may influence the intent and implications of social support” (p. 108). She identified several dysfunctions of support: 1) as commodity, 2) as information retrieval, 3) as codependency, and 4) as hegemony. Support as commodity establishes a situation where the support recipient owes the provider, so that “support may act as political currency, allowing providers to dictate to recipients when they are ready to ‘cash in their chips” (p. 108). As information retrieval, there is an assumption of a hidden agenda for the provider to uncover information they couldn’t otherwise obtain. Support may also function to perpetuate codependency, so that newcomers quickly learn their roles within communicative and organizational norms. In this case, behavior that appears to be supportive “may actually be individuals enacting their own addictive behaviors, enabling them to repeat familiar patterns. Ostensible social support must maintain the closed system in a way that is acceptable to organizational members . . . maintaining the status quo is a key defining characteristic of support as codependency” (p. 109). Hegemony refers to “the process by which one group actively supports the goals and aspirations of another dominant group, even though those goals may not be in the subordinate group’s interest” (Mumby, 1988, p. 55). Support as hegemony occurs when communication is used by those in power to maintain the status quo so that they remain in power. Support does not always serve these dysfunctions but healthcare organizations—based on asymmetrical relationships, competition for resources, and capitation—provide a fertile breeding ground for such communication. The scholarship reviewed in this chapter illustrates that job stressors and supportive communication in healthcare organizations are fruitful subjects for researchers to continue to explore. To conclude our discussion of this literature, we briefly identify issues that we believe are promising topics for future study, particularly for organizational and health communication researchers. Specifically, we consider issues of managed care, alternative healthcare settings, and lay caregiving. IMPLICATIONS FOR FUTURE RESEARCH

Healthcare professionals work in an increasingly complex healthcare environment, one characterized by constant change at systemic, organizational, and individual levels. The effects of managed care policies and initiatives have dramatically transformed the delivery of healthcare in the United States and shifted healthcare workers’ job roles and practices (Geist & Hardesty, 1992; Wilkerson et al., 1997). By all accounts, the managed care era is far from over and healthcare systems will continue to adapt and respond to managed competition in a variety of ways. Cost containment, capitation, HMOs, preferred provider organizations, and changes in Medicare have impacted not only what and how care is provided but also the communication between and among providers and recipients. A special 2001 issue of Journal of Applied Communication Research (vol. 29, issue 2) “Communication in the Age of Managed Care,” illustrates that communication is a central process in the managed care era as

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caregivers, patients, insurers, and others make sense of and adapt to new roles, relationships, and practices. Although it remains uncertain how managed care will ultimately affect healthcare workers and consumers, it seems likely that the widespread changes in healthcare delivery brought about by managed care will continue. We anticipate that communication will remain of paramount importance in the transformation from a feefor-service to managed care system and it will continue to have an impact on the health of care providers and the quality of care they are able to provide. Research reviewed in this chapter reveals that managed care is a significant job stressor for many of today’s healthcare professionals. One interesting area for scholars to investigate is the relationship between communication about managed care (e.g., sources of information, quantity and quality of communication, patterns of communication between caregivers) and healthcare providers’ experiences of stress. For example, does talk about managed care heighten caregiver stress or does it manage uncertainty and give caregivers a greater sense of control over managed care changes? Moreover, where and from whom (e.g., coworkers, supervisors, patients, the media) do caregivers receive information about managed care and how do these sources influence subsequent communication about managed care changes? In addition, how does such communication help (or hinder) healthcare providers’ sensemaking of and coping with managed care changes in their work lives and relationships? Communication scholars are well suited to study these research topics and to contribute to the growing body of literature regarding managed care. A second area for researchers to consider is to extend the study of job stressors and supportive communication into more varied organizational contexts such as outpatient clinics, home care settings, and holistic care provider practices. Although hospitals remain an important component of healthcare delivery and a significant setting in which to continue the study of stress and social support, economic changes brought about by managed care and shifting healthcare consumer preferences have led to more and more patients seeking medical care outside of inpatient settings (du Pr´e, 2000). We encourage researchers to investigate job stressors and supportive communication within the wide range of healthcare organizations that exist. A useful starting point may be to consider whether findings from past research, primarily conducted in hospital or other inpatient settings, extend to different organizational contexts. Or, are there characteristics about these new environments that may generate unique job stressors and alternative forms and sources of supportive communication? For example, healthcare professionals working in patients’ homes may have more communication with family members than they would working in a hospital. It seems likely that in some cases, these interactions with patients’ relatives may add to caregiver stress, while in other situations family members may be a valuable source of social support. The research reviewed in this chapter illustrates that researchers are studying stress and social support among healthcare professionals representing a greater variety of medical disciplines (e.g., occupational therapists, physical therapists, doctors, nurses, social workers). In the future, we believe that scholars will again expand their scope of examination to study stress and social support among lay caregivers, a topic that is related to our suggestions about new organizational healthcare contexts. Certainly, the idea of relatives or family members caring for sick or injured loved ones is not a new idea (Bethea, Travis, & Pecchioni, 2000; Ellis, Miller, & Given, 1989; Ruppert, 1996a, 1996b; Scharlach, 1994). However, factors such as people living longer with chronic diseases and rising medical costs have led many people who are not healthcare professionals to take on caregiving duties for others. As du Pr´e (2000) argues, lay caregivers may experience the same stress

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related to caregiving as their professional counterparts, but they often lack the training and supportive communication to help them cope. Although scholarship in other disciplines indicates that stress and social support in lay caregiving is a promising area of research (Bourgeois, Beach, Schulz, & Burgio, 1996; Faria & Schall, 1997; Ruppert, 1996a, 1996b), these topics have not yet been fully examined by communication researchers. Issues of interest for communication scholars may include how lay caregivers balance work/home conflict with their caregiving responsibilities. In addition, what is the impact of seeing loved ones suffer and change? What are the physical, psychological, and communicative effects for lay caregivers who have insufficient medical training? How can they be bolstered or buffered from stress with supportive communication? Although these questions require future investigation, it appears likely that they will be of increasing significance as lay caregiving becomes more common. CONCLUSION

This chapter has reviewed research from the past 15 years regarding stress and social support in healthcare organizations. The literature presented here indicates that the healthcare landscape has become increasingly complex for healthcare providers, and significant stressors often accompany these complexities in healthcare delivery and systems. Research suggests that healthcare professionals experience many different types of job stress, but issues of managed care, role changes, emotional labor, and home/work conflict have been particularly noteworthy. As researchers’ conceptualization of job stress has evolved, so has their understanding of supportive communication. Past scholarship suggests that social support serves a variety of helpful functions for caregivers. However, other scholars speculate that supportive communication may also negatively affect healthcare organizations by furthering the communicative dysfunctions that may already exist among healthcare professionals. The field of stress and supportive communication has a rich research history among organizational and health communication scholars. It may seem that there is not much more to unearth about these topics, but we would argue that the research reviewed in this chapter indicates otherwise. Topics such as managed care, and all of its systemic, organizational, and individual implications present researchers with myriad opportunities for new discoveries about the job stressors and supportive communication that occurs in healthcare organizations. It is through continued scholarly investigation that we will better understand the demands that impact healthcare professionals and the communication processes that characterizes delivery of care. REFERENCES Albrecht, T. L., & Adelman, M. B. (Eds.). (1987). Communicating social support. Newbury Park, CA: Sage. Apker, J. (2001). Role development in the managed care era: A case of hospital-based nursing. Journal of Applied Communication Research, 29, 117–136. Ashforth, B. E., & Humphrey, R. H. (1993). Emotional labor in service roles: The influence of identity. Academy of Management Review, 18, 88–115. Aston, J., & Lavery, J. (1993). The health of women in paid employment: Effects of quality of work role, social support and cynicism on psychological and physical well-being. Women and Health, 20, 1–25.

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17 Groups and Teams in Health Care: Communication and Effectiveness Marshall Scott Poole Texas A&M University

Kevin Real University of Kentucky

INTRODUCTION

Health care teams have played an important role in patient care for nearly 100 years (Brown, 1982; R. N. Wilson, 1954). The “team imperative” has waxed steadily stronger over the past 40 years owing to the ever increasing complexity of medical technology and treatments, the burgeoning specialization of medical professions, the desire to address the many facets of patient care, the growing power of regulatory and certification agencies, and the move to managed care and integrated health care systems. Rundall and Hetherington (1988) noted that “it is difficult to think of a substantial task within our modern health care service organizations that does not require a team, or work group, for its completion” (p. 188). However, despite the consistent and sometimes effusive praise for the team concept and despite numerous exhortations to utilize teams for patient care, practice often belies the rhetoric. The National Health Service of England (1993) quoted in Couchman (1995) published a report that observed that teamwork is “more easily talked about and aspired to than achieved. Rigid role demarcation, tradition, vested professional interest, poor communications leading to confusion and misunderstandings about responsibilities, have all been blamed for lack of progress” (quoted in Couchman, 1995, p. 32). In the United States, Banta and Fox (1972) concluded from a study of interdisciplinary health care teams in poverty settings that “teams did not function as they had been envisioned. The participants were too diverse and too unfamiliar to each other for the teams to function ideally” (p. 697). These observations reflect the variability in health care team functioning that we observed in our literature review. Merely setting up teams and encouraging teamwork is

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not sufficient to ensure effective group functioning. A number of factors and processes influence team effectiveness, and communication figures prominently among them. This chapter describes what we know and what we need to know about communication and group effectiveness in health care settings. After advancing some definitions, we present a short selective history of health care teams in the United States. Then we consider the nature and variety of groups in health care and discuss the nature of previous research studies on health care groups. The fourth section details four key processes related to the effectiveness of groups and teams in health care and current research on factors that influence these processes. The review focuses on a broad range of health care groups, going beyond the interdisciplinary teams that have received a great deal of attention in recent years. Often lost in the hoopla surrounding the “team” concept are unnoticed groups such as work groups on hospital floors and routinized teams such as day surgery units. This review considers groups and teams broadly under the assumption that it is often the comparisons and contrasts that highlight important variables and processes. DEFINITIONS

A work group can be defined as three or more individuals who must interact interdependently and adaptively to achieve common goals (Vinokur-Kaplan, 1995). Groups vary in terms their “entitivity” (Campbell, 1958) or “solidarity.” Dimensions on which groups may vary include these (Wilson, 1977): The degree of interdependence among members in terms of (a) the activities required to carry out their work (task interdependence) or (b) rewards and punishments incurred by the group (outcome interdependence). The degree to which members perceive the group to be a group (i.e., a bounded entity with its own identity). The degree to which members are motivated to participate in the group. The degree to which members have shared knowledge, experiences, norms, and values and are aware of their commonalities. The degree to which members interact with each other.

The higher on each of these dimensions a group is, the greater the group’s solidarity. Team adds a normative dimension to the group concept in that the ideal team is supposed to be high on all five dimensions of solidarity. Teams have a well-defined focus and a sense of purpose and unity that members of other types of groups do not share. However, despite their sometimes lofty aspirations, teams vary in solidarity, and their variation figures importantly in the extant literature. In this chapter, we use the term group to refer to people assigned to the same work unit or task and the term team to refer to a group intended to achieve high levels of solidarity, purpose, and unity, whether or not it actually does so. Departures from this ideal will be specified in terms of key dimensions of structure and process discussed below. Several distinctions must be made regarding professional and departmental differentiation. Disciplines can be distinguished based on the level of training and type of socialization their members undergo. Physicians form one discipline, nurses a second, social workers a third, and so on. Specialties can be distinguished within disciplines based on the area of care focused on. Among physicians and nurses, for example, specialties such as surgery,

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pediatrics, and geriatrics can be distinguished. Functions are associated with particular departments or divisions in a health care organization, and any department or division may be staffed by one or more disciplines and specialties. The next section sets the stage for this review by presenting a brief history of team approaches to health care in the United States. Following this is a discussion of basic types of health care teams, the people who make up these teams, and the environment in which they operate. The fourth section considers the approaches utilized in research on health care teams, noting two key limitations of most prior research. Section 5 reviews current knowledge about communication in health care teams in terms of key outcomes, work processes, and role negotiation. The final section summarizes key trends in the review and suggests new directions for research on health care teams. HISTORY OF HEALTH CARE TEAMS IN THE UNITED STATES

The history of health care teams in the United States can be roughly divided into four periods. The first period, from 1910 to 1945, has been termed by T. M. Brown (1982) a period of “fitful growth.” During these years, advances in medical science spurred increasing specialization of physicians and other care providers, and this created interest in team approaches to care. Teams were justified by the argument that no single person could adequately master and represent all areas of medicine and allied professions such as social work and psychology. Teamwork would enable caregivers to attend to both scientific and social sides of the patient’s problems (Davis & Warner, 1918). During this period, a number of writers (though by no means all) emphasized the importance of equalizing the influence of the professions in teams so that physicians did not control them. For example, Dorothy Rogers (1932) wrote, It becomes a self-evident fact that the game depends upon no player considering himself the sole performer, or failing to recognize the ability of each member of the team to fill his post with skill and precision, to play the game for the glory of the game itself. What more worthy contest than that of hospital life! What more creditable, or skillful team members are to be found among the professional personnel of these institutions! (p. 659)

T. M. Brown (1982) termed the second period, from 1945 to 1970, “high tide,” because it witnessed extraordinary growth of the health care industry and, with it, the growth of specialization and team approaches. The trends of the 1930s and 1940s accelerated, and numerous disciplines were joined in health care teams covering the entire spectrum of health problems (Julia & Thompson, 1994). Major medical centers, with their plethora of specialties, were an important force in increasing the use of teams (T. M. Brown, 1982). Comprehensive care and the community outreach movement, both given massive infusions of government funding, were particularly suited to team approaches. As noted below, the emphasis on teams during this period also served to equalize to some extent the influence of newer allied fields and nursing on the care process. In the early 1970s came a period of “re-evaluation” that saw closer scrutiny of the teams that were accepted with enthusiasm during the high tide. Questions regarding whether health care teams had met their potential were raised. Nagi (1975) observed that most studies of teams had focused on interpersonal dynamics and had neglected to measure quality of care. He called for empirical studies to test whether team approaches showed measurable improvements in the quality of care and to discover what team structures

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contributed to effectiveness. Although enthusiastic discussions of the value of teamwork continued to appear (e.g., Ducanis & Golin, 1979), work in this period emphasized objective study and research to evaluate and improve team functioning. The period from 1980 to the present constitutes the fourth phase, “consolidation.” During this period, powerful institutional forces reshaped health care and with it team approaches. The structure of health care delivery systems changed, especially with the increased prevalence of managed care, developed to control and reduce health care–related expenditures for both patients and employers (Robbins, 1998). Managed care organizations, to varying degrees, attempt to keep costs down while simultaneously maintaining high standards of quality. Writing during this period suggested that effective interdisciplinary care teams were needed to meet the challenges of rapid economic change and increased competition (Hansen & Hayes, 1998; Whorley, 1996). During this period, there was also increasing pressure on health care organizations to meet heightened standards of care. The Joint Commission on Accreditation of Healthcare Organizations, the National Committee for Quality Assurance, and the Centers for Medicare and Medicaid Services issued standards that required health care organizations to implement quality improvement structures, most of which required interdisciplinary team approaches (Drinka, 1996; Julia & Thompson, 1994; LaVallee & McLaughlin, 1994). As a result, teams seem to be more securely situated as an integral part of health care than ever. Schofield and Amodeo (1999) added a cautionary note, however, when they observed that the need for interdisciplinary teams may diminish if the emphasis on shortened hospital stays, formal written care protocols, and home-based care increases. Health care teams have hardly been a neutral subject in any of the four periods. Various segments of the medical professions have used teams as a justification for their own agendas and political moves. During the first period of team growth, specialist physicians advocated teams as a means of eliminating general practitioners, who were portrayed as hopelessly limited in their knowledge. Indeed Silver (1958, cited in T. M. Brown, 1982, p.13) saw the health care team as a “compound replacement of the family doctor.” Throughout the 20th century, members of nursing and other allied professions, such as psychology, social work, occupational therapy, and neuropathology, used appeals to the imagery of teamwork to justify increases in status and influence vis-`a-vis the hierachical domination of physicians (T. M. Brown, 1982; Schatzman & Bucher, 1964). Following World War II, nurses who graduated from professional schools shifted the definition of teamwork to signify an arrangement in which a graduate nurse assumed leadership of auxiliary nursing personnel, including practical nurses, maids, orderlies, and secretaries (see, e.g., E. Brown, 1948). T. M. Brown (1982) documented similar attempts by social workers and psychologists to use the language of teamwork to consolidate their positions and power. Nor have the ideological uses of teams been confined to advancing the interests of professions. In the 1960s, discourse about teams took on the flavor of the time, emphasizing egalitarian values, community control, and outreach (T. M. Brown, 1982). In the 1990s, teams were viewed as ideal vehicles for quality improvement, and various accrediting bodies went so far as to require hospitals and health organizations to use teams in quality improvement and service delivery. In sum, articles on health care teams are often ideologically tinged with the notion that teams are desirable and beneficial. It is thus sometimes difficult to determine whether the authors’ conclusions derive from careful reflection on the data or case at hand or from selective observation of facts that favor the team.

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THE NATURE OF HEALTH CARE TEAMS Types of Health Care Groups

Several typologies of health care groups have been advanced (see, e.g., Drinka, 1996; Latella, 2000; McElhaney & Briggs, 2000; Rundall & Hetherington, 1988). Most of these give a restricted picture of health care groups due to limitations in the authors’ focus. Typologies framed around interdisciplinary health care teams rarely acknowledge the formal organization of work units, focusing instead on the coordination and collaboration of different disciplines and specialties. Typologies in articles on health care organizations focus more on formally established work groups and assume that interdisciplinary care occurs within a matrix. It is important to take both aspects of health care group organization into account. At least six generic types of health care groups can be distinguished. Ad hoc groups are formed for a limited period of time to address a problem and disband when they achieve their goals. Examples of ad hoc groups include a quality improvement team formed to improve postoperative procedures or an advisory group established to work with architects in the redesign of a hospital floor. An ad hoc group may be composed of members from one or several disciplines or departments. It is organized around its task and typically establishes its own structure, rules, and procedures. Its leader may be appointed by management or chosen by its members. Nominal care groups provide care through independent consultation of professionals directed by a primary care physician. This physician refers the patient to different specialists, who provide care independently; their inputs are coordinated by the physician. This group has a classic “wheel” structure—the primary care physician is at the center and the other care providers deliver services as requested. Unidisciplinary groups are organized around a single discipline. Although there are supporting personnel in many unidisciplinary groups, they play a strictly subsidiary role, and their contributions are specified and managed by the disciplinary members. Unidisciplinary groups are often relatively permanent formal work groups, such as nursing units or hospital floors (Kaluzny, 1985; Rundall & Hetherington, 1988), or group practices based on one or more specialties. Communication systems in these types of groups vary widely, but there is pressure to routinize and formalize information sharing and decision making so that the group can operate effectively with the minimum necessary communication. Multidisciplinary teams are composed of practitioners from multiple disciplines who work in conjunction with each other but function autonomously (Kresevic & Holder, 1998; Ogland-Hand & Zeiss, 2000). Providers from each discipline set their own disciplinespecific goals, work within their own professional boundaries, and submit their own findings and recommendations (Latella, 2000). Multidisciplinary teams are often hierarchically organized, with a designated leader in charge of coordinating overall patient care (Ogland-Hand & Zeiss, 2000). It is common for these teams to operate in individual “silos” with various professions working sequentially rather than simultaneously on their own specific aspect of patient care. One prerequisite for effective multidisciplinary teams is a good communication system that can directly or indirectly inform members of what others are doing. Interdisciplinary teams, on the other hand, consist of practitioners from two or more disciplines who work interdependently in the same setting, communicating both formally and informally to share information (Ogland-Hand & Zeiss, 2000; Weiland, Kramer,

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Waite, & Rubenstein, 1996). Members contribute their disciplinary perspectives to develop treatment plans and then collaborate in their implementation (Kresevic & Holder, 1998; Ogland-Hand & Zeiss, 2000). “The true strength of interdisciplinary teamwork is ongoing communication, trust in each other’s competency and expertise, a perspective of equality within the team, and the desire to work toward shared goals” (Kresevic & Holder, 1998, p. 788). In addition to passing information through the communication system, interdisciplinary team members must engage in active collaboration to achieve success and ensure the overall well-being of the patient. Before defining the last type of team, it is important to note that the terms multidisciplinary and interdisciplinary are often used interchangeably (Schofield & Amodeo, 1999). This confounding of the two terms makes it difficult to determine what type of team is involved in some studies, but the confusion can usually be resolved through descriptions of how the teams work. Transdisciplinary teams are “interdisciplinary teams in which members have developed sufficient trust and mutual confidence to engage in teaching and learning across disciplinary boundaries” (Weiland et al., 1996, p. 656). Instead of adhering to rigid social and professional hierarchies, a transdisciplinary team chooses its leaders based on the needs of the patient (Latella, 2000; Weiland et al., 1996). One team member is generally designated to be the primary therapist, depending on the needs of the case, and he or she undertakes some of the activities that would ordinarily be performed by another discipline or specialty, consulting others when necessary. “For example, a nurse may be the primary therapist/leader for a client whose treatment or reason for admittance is to stabilize psychiatric medications” (Latella, 2000, p. 35). An effective transdisciplinary team requires cross-training of members so that members have the knowledge and skills to provide care and know their limitations so that they can seek input and help from other members when appropriate. Effective transdisciplinary teams, then, require communication systems for teaching and learning as well as for information-sharing and collaboration. The transdisciplinary team model attempts to capitalize on its members’ strengths by assigning them cases that best suit their skills and dispositions. It also attempts to minimize the duplication of services resulting from patient contact with multiple members of the team (Latella, 2000). The multidisciplinary and interdisciplinary care models that require members from different specialties or disciplines to work directly with many or most of the team’s cases place demands on personnel that may result in overload and stress. However, the transdisciplinary model allows professionals with limited time to cover more cases by entrusting some of the work and decision-making to others while keeping them available for advice, consultation, and quality control. Ideally, both the transdisciplinary and interdisciplinary models create an environment in which each profession contributes its own expertise to the decision-making process in an egalitarian fashion (Weiland et al., 1996). However, Frank (1961) registered the warning that interdisciplinarity and transdisciplinarity may bring with them dilution of professionalism as members attempt to work in areas for which they were not thoroughly trained. The same work can be accomplished using different team structures, so there is no one-to-one correspondence between areas of care and team types. Although most surgical teams are in effect unidisciplinary teams organized around the surgeon and other participating physicians, some are interdisciplinary or transdisciplinary teams in which professionals from several disciplines collaborate on the surgery. Cancer care can be delivered by unidisciplinary, multidisciplinary, interdisciplinary, or transdisciplinary teams. Teams of a given type also vary along critical parameters of group structure and organization, such as the following:

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Boundedness: the degree to which team members report to a supervisor in the team itself versus a matrix form of organization in which members from more than one department work on the team and report to their department head and to the team’s authority structure. Centralization: The degree to which power to make decisions and determine group actions is concentrated in a few members. In a decentralized team, power is more or less evenly distributed across the membership. Diversity: The degree to which the team members are similar. Key types of diversity in health care teams include the mix of disciplines and specialties as well as important social categories such as gender, age group, and race.

Roles in Health Care Groups

Health care groups typically have differentiated role structures. A surgical team, for example, comprises members from three or more distinct disciplines or specialties working together. Medical groups for complicated or long-term care cases are impressively complex: Fountain (1993) reported that oncology care groups may encompass as many as 18 distinct roles and 24 specialties! Even routinized groups, such as a hospital ward, bring together several different types of nurses, orderlies, phlebotomists, and other health professionals. One challenge for health care teams is to encourage communication and coordination among members whose training often makes it difficult for them to appreciate and understand one another. We consider this issue in our discussion of team processes in a later section. Health care groups face several other challenges with regard to roles. In multidisciplinary, interdisciplinary, and transdisciplinary teams, an important issue is who takes on the task of leading or coordinating the team. Considerations of occupational status would suggest that physicians generally assume responsibility for managing teams, but in practice nurses often serve in leadership roles (with physicians or Ph.D.s setting the parameters of care and resolving especially difficult cases) (Fountain, 1993). Fountain (1993) observed that nurses asked to fill the leadership role are often unprepared because nursing education stresses technical aspects of care rather than management skills (the same can be said of most physicians). Miller and her colleagues found that nursing care coordinator roles develop in complex and uncertain environments and possess considerable role ambiguity (Miller, Joseph, & Apker, 2000). As holder of the highest status role, the physician—“captain of the ship”—may often feel the need and obligation to step in for the uncertain team leader. The dynamics of role negotiation, discussed below, are complex and continuous in health care groups. A second issue is core versus peripheral members. There is generally a subgroup of core members who work with each other more or less continuously. This core is supplemented by peripheral members, some of whom work with a patient frequently and others of whom see the patient only a few times. How to include peripheral members in a meaningful way in the work of the team and how far to trust their ideas and suggestions over those of the core members is a challenge for all teams. Their ideas often represent novel thinking and may stimulate better care, but these may also upset the group’s equilibrium and cause tensions among core members. An implicit issue in every health care group is the role of the patient and the patient’s significant others. Should the patient be regarded as a member of the health care team or as a passive subject to be worked on? Lammers and Krikorian (1997) observed that the patient is the “silent member” of every health care group, a subject who becomes agent as

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the group connects with his or her care. Beckhard (1972) wrote about “the patient system” in comprehensive health care; this system includes families and friends, who can have a “variety of physical, emotional, and social problems” and “present a varied set of needs for service” (p. 289). Involving the patient is thus often considerably more complex than simply consulting the person being treated. Some health care teams involve the patient and significant others directly in care as a matter of values, whereas others seek to ascertain patient needs and familial preferences but leave care options mostly to the professionals. Health Care Teams as Bona Fide Groups

Berteotti and Seibold (1994) and Lammers and Krikorian (1997) studied health care teams using the bona fide group perspective (Putnam & Stohl, 1990, 1996; Stohl & Putnam, 1994). Bona fide groups are “characterized by stable yet permeable boundaries and interdependence with context” (Putnam & Stohl, 1990, p. 248), characteristics shared by most groups in health care. In many respects, health care groups are moving targets, able to form and disband according to each patient’s medical needs. Although specific disciplines and roles may remain the same, the individuals who fill these roles may continually change, on a daily or sometimes even hourly basis. Stable and permeable boundaries are evidenced by the consistent structure of many teams that experience fluctuation in membership. Interdependence with context is demonstrated by the continual changes in patient care and the transitions from one area of medical practice to another. Thus, many of the concepts of the bona fide group construct are especially relevant in the study of health care teams. One of the cleanest illustrations of the bona fide group perspective involves how group boundaries shift through multiple group membership and conflicting role identities in health care teams. “In organizational groups, members carry residues of occupational training, hierarchical status, and departmental membership” (Putnam & Stohl, 1996, p. 150). A primary issue in health care teams concerns how individual members can transcend their own disciplinary perspectives and work collaboratively toward improving patient wellbeing (Drinka & Clark, 2000; Ducanis & Golin, 1979). Often, however, the traditional hierarchy of medical care is brought into force in health care groups, rendering physicians as de facto leaders (Cambell-Heider & Pollock, 1987; Feiger & Schmitt, 1979). Team members can experience conflicting role identities as they struggle with the professional demands and loyalties that come with belonging to multiple groups. When interacting in one group, they bring in membership “residues” from other groups. The permeability of a group’s boundary can determine the degree to which members identify with that particular group or with other groups (Alderfer & Smith, 1982; Lichtenstein, Alexander, Jinnett, & Ullman, 1997). Although there are many interdisciplinary groups in health care, many health professionals probably spend the bulk of their time in uni- or multidisciplinary functions. Many also spend time in more than one type of group, from ad hoc to transdisciplinary groups, at the same time. Multiple group memberships influence team dynamics (Vinokur-Kaplan, 1995), pointing to the importance of studying health care groups in their organizational contexts. APPROACHES TO THE STUDY OF HEALTH CARE TEAMS

A variety of methods have been used in the empirical study of health care teams. The largest class of articles report case studies of health care teams (e.g., Berteotti & Seibold, 1994; Buggs, Valadez, & Lund, 1993; Cohen, Rubin, & Gombash, 1992; Coser, 1958;

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Crepeau, 1994; Drinka, 1991; Fisher & Opper, 1996; Fuller & Jordan, 1994; Houston, Clute, Ryan-Crepin, Kimball, & Matthews, 1994). Case studies are valuable because they give a sense of the situations that health care groups face and the factors that affect the team. However, case studies vary widely in the rigor with which observations are taken and recorded and in the level of objectivity of the writer. Most case studies are based on observations and interviews at a global level by researchers not specially trained in fieldwork. A considerable number are reports of team success from a member of the team, so it is sometimes difficult to determine whether biases have affected the conclusions. There are also case studies that are carefully planned and pay special attention to controlling or allowing for possible inferential problems (e.g., Berteotti & Seibold, 1994; Simon, 1999). These usually focus on a particular problem, such as the role of power in the medical team or the social construction of diagnoses, and employ a specific framework, such as discourse analysis. Another popular design is the controlled trial, in which team and nonteam modes of care are compared (e.g., Becker, McVey, Saltz, Feussner, & Cohen, 1987; Hogan & Fox, 1990; Hogan, Fox, Badley, & Mann, 1987; Jackson et al., 1993; Katon et al., 1999; McCrone, Beecham, & Knapp, 1994; Muijen, Cooney, Strathdee, Bell, & Hudson, 1994; Reuben et al., 1995; Vinokur-Kaplan, 1995; Winograd, Gerety, & Lai, 1993). Table 17.1 lists a number of empirical studies of health care groups, many of which are controlled trials. In most of these studies, the unit of analysis is the individual patient; patients under team care are compared to those under other modes of care using random assignment of patients to conditions (Becker et al., 1987; Hogan et al., 1987; Hogan & Fox, 1990; Katon et al., 1999; Reuben et al., 1995; Winograd et al., 1993). These studies are useful because they enable more rigorous determination of effects due to team approaches. Most reports of controlled trials detail the disciplines and specialties involved and the care they delivered but contain only cursory references to team structure or process. There is also lack of variation in team structure in most studies because often only a single treatment team is involved in the team condition. Hence there is no way to separate the effects of particular team dynamics or compositions from the effects of team care. Several other approaches have also been employed, though less frequently. Several studies report surveys of existing teams or team members (Abramson & Mizrahi, 1996; Alexander, Lichtenstein, Jinnett, D’Aunno, & Ullman, 1996; Baggs et al., 1999; Benson & Ducanis, 1995; Bloom & Alexander, 1982; Castle & Banaszak-Holl, 1997; Gaare, O’Sullivan, King, & Gilbride, 1990; Vinokur-Kaplan, 1995; Zimmerman, 1994; Zimmerman & Applegate, 1992). These are among the most useful studies in this area because they contrast care across teams and organizations. Historical or archival studies have also been conducted. Examples include a study based on chart audits (Cosgrove et al., 1998), an analysis of patient assessment records (Fuller & Cowan, 1999), and a retrospective medical record cohort study (Fazal et al., 1995). A few studies have also utilized interaction analysis (e.g., Feiger & Schmitt, 1979). Two general observations about research on health care teams are in order. First, there are many more overviews and exhortatory articles that praise the team approach and present tips for working with teams than studies that systematically report on health care teams (Keith, 1991; Nagi, 1975; Schofield & Amodeo, 1999; Weiland et al., 1996). Of the systematic studies, about half are descriptive case studies that provide little or no detail on group processes or outcomes. The study text typically describes the medical problem and any unusual demands it makes, the professionals involved in the team and the roles they filled, and the care that was given and ends with general observations on member and patient reactions and some “lessons learned.” Among the studies that do more

378 Controlled study (185) Survey (79) Controlled study (20)

Child development

Cardiology

Community health

Geriatrics

Rehabilitation

Rehabilitation

Bailey et al. (1995)

Bakst & Marra (1955) Banta & Fox (1972)

Becker et al. (1987)

Benson & Ducanis (1995) Benton et al. (1951)

Hospice

Case study

Intensive care

Baggs et al. (1999)

Berteotti & Seibold (1994)

Retrospective scale (72) Controlled study (90)

Emergency room

Argote (1982)

Case study

Survey, interview, records (322)

Interview, survey, records (30)

Survey (1,060)

Mental health

Alexander et al. (1996)

Interview (103)

Method (N)

Social work

Medical Area

Abramson & Mizrahi (1996)

Authors

TABLE 17.1

Interdisciplinary

Unspecified

Interdisciplinary

Interdisciplinary

Interdisciplinary

Unspecified

Interdisciplinary

Unspecified

Unspecified

Multidisciplinary

Interdisciplinary

Type of Team

Findings

Home care for single-disease category is probably unjustified. Hospital, although more expensive, provides better and more effective service. Community poverty created stress; role relations were strained, especially between nurses and social workers. High motivation to work in this setting is necessary but not sufficient. No differences were found in the type or rate of hospital-acquired complications between intervention and control group. Nurses shared consistent view of their role and how they believed others saw this role. Locus of control similar among team members. No significant difference for treatment group in muscle strength gain or activities of daily living. Coordination hampered by interpersonal dynamics and structural aspects of team, which limited information access and led to ambiguous role relationships.

Significant differences for rankings: Social workers focused more on interaction with physicians, while physicians focused more on competence of social workers. The greater the diversity in tenure, age, occupation, and team size, the greater the negative assessment of team functioning. The greater the gender diversity, the more positive the assessment of team functioning. Use of programmed means of coordination best for ERs experiencing low uncertainty; nonprogrammed means best for ERs experiencing high uncertainty. Nurses’ (not physicians’) reports of collaboration positively related to patient outcomes. Unit-level collaboration associated with patient outcomes. Fairly high independent agreement across professionals in team.

Studies of Health Care Teams

379

Case study

Geriatrics

Rehabilitation Rehabilitation

Rehabilitation

Hospital

Castle & BanaszakHoll (1997)

Cohen et al. (1992) Copp (1966a)

Copp & Harris (1966b) Coser (1958)

Erickson & Perkins (1994) Fazal et al. (1995)

Cosgrove et al. (1998) Drinka (1991)

Controlled study (44)

Nursing

Buggs et al. (1993)

Case study Retrospective cohort (85)

Epidemiology (hospital)

Case study

Geriatrics

Orthopedics

Historical/archival

Rehabilitation

Case study Controlled study (190)

Survey, records (473)

Case study

Case study

Psychiatry

Brodsky (1969)

Quasi-controlled (1,230)

Nursing

Bloom & Alexander (1982)

Interdisciplinary

Interdisciplinary

Interdisciplinary

Multidisciplinary

Multiple types

Unspecified

Interdisciplinary Unspecified

Top management teams

Unidisciplinary

Multidisciplinary

Unidisciplinary

continued

Tuberculosis team isolated more patients more quickly, decreased length of stay, and saved money.

Two forms of coordination, hierarchical authority and lateral coordination, are differentially predicted by structural variables of staff professionalism and unit size. On larger units, there is hierarchical control, where units with greater staff professionalism provide lateral and hierarchical coordination. Psychiatrist needs to ensure greater communication about patients’ medical conditions between shifts and to involve nurses in patient treatment plans more. Infections decreased, costs were reduced. Anecdotal reports of improved staff and patient satisfaction. Demographic characteristics of top management teams (higher job tenure, higher education, and professional involvement) predict adoption of management innovations. Use of team is an effective way to manage patients. Rehabilitation improves patients’ functional status, disabilities, and return to work and reduces time off work and financial loss through illness. Rehabilitation improves patients’ functional status and disabilities. Confirms results of a larger trial in an urban community. In the medical ward, decisions made by consensus. In the surgical ward, decisions made by fiat. Nurses on the surgical ward knew more about patients and were inclined more toward innovation and less toward rituals. Geographic isolation of rehab patients improved some aspects of care but not uniformly across rehab teams. Provided evidence that practicing professionals can learn to assume functional leadership roles to help a team survive and thrive over time. Reported improved knee and hip treatments.

380 Controlled study (132) Controlled study (113) Case study

Geriatrics

Mental health

Psychiatry

Katon et al. (1999)

Nursing

Houston et al. (1994) Jackson et al. (1993) Controlled study (414) Controlled study (228)

Follow-up (180)

Pediatrics

Geriatrics

Quasi-controlled (12)

Geriatrics

Hennessy & Shen (1986) Hochstadt & Harwicke (1985) Hogan & Fox (1990) Hogan et al. (1987)

Controlled study (108)

Geriatrics

Survey (262)

Dietetics

Quasi-controlled (2)

Psychiatry

Case study (100)

Case study

Dietetics

Psychiatry

Quasi-controlled (4)

Method (N)

Geriatrics

Medical Area

Germain et al. (1995)

Fuller & Jordan (1994) Gaare et al. (1990)

Feiger & Schmitt (1979) Fisher & Opper (1996) Fuller & Cowan (1999)

Authors

Multidisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Multidisciplinary

Multidisciplinary

Interdisciplinary

Multidisciplinary

Multidisciplinary

Multidisciplinary

Interdisciplinary

Interdisciplinary

Type of Team

TABLE 17.1 (Continued)

There was a significant increase in rate of new referrals, suggesting the team brought about increased access to mental health care. Treatment group showed significant improvements in adherence to medication, satisfaction w/care, and depressive outcomes compared to those provided usual care.

Intervention group had improved mental status, received fewer medications, and had lower short-term death rates. TQM and teams reduced patient transport time in a hospital setting.

There were different degrees of collegiality by team, but the more collegial the team, the more successful were patient outcomes. Nursing support team can dramatically reduce problems of hospital nutrition. Accuracy of consensus predictions was found to be comparable with actuarially based studies over similar time scales. Reasserts role for clinical judgment in risk assessment. Team deemed useful as way of identifying, evaluating, and intervening with hospitalized substance abusers. Physicans believed they were the primary decision-makers for nutrition care for their patients. Dietitians differed with this view; more than half viewed themselves as primary decision-maker. Length of stay of entire treatment group was significantly shorter than for controls. No difference for rehospitalization rates among patients surviving study length. Improved rate of home discharge. Rater agreements affected by measurement constraints, value differences, and work roles. Compared to previous research, findings indicate that multidisciplinary teams play a central role in service acquisition for abused children. Intervention group had improved survival rate and improved health.

Findings

381

Psychiatry

Psychiatry

McCrone et al. (1994) Pisetsky et al. (1992)

Geriatrics

Mental health

Lichtenstein et al. (1997)

Reuben et al. (1995)

Geriatrics

Lichtenberg et al. (1990)

Geriatrics

Case study

Hospital pharmacy

Leape et al. (1999)

Poulin et al. (1994)

Controlled study (81)

Hospital

Larson et al. (1996)

Controlled study (2,353)

Survey (817)

Survey (1,004)

Controlled study (32)

Controlled study (225)

Quasi-controlled (24)

Survey (139)

Intensive care

King and Lee (1994)

Controlled study (40)

Rheumatology

Katz et al. (1968)

Interdisciplinary

Interdisciplinary

Multidisciplinary

Unidisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Field experimental

Unspecified

Multidisciplinary

continued

An effective liaison involves several important elements: frequent on-site communication, evolving collaborative arrangement with acceptance of each other’s roles, self-awareness, flexibility, and recognition by psychiatrist of physicians’ needs. A large percentage of social workers are members of teams, and the majority of these are satisfied with team membership. Team members have more influence over job tasks, experience greater time pressure, and spend more time in meetings and on paperwork and less time with clients than nonmembers. No differences were found in the survival rate or measures of functional and health status between intervention and control groups.

Team treatment was beneficial: less deterioration in activities of daily living and disease activity, more numerous improvements, and less deterioration in financial independence. Although Navy nurses and physicians perceived they were involved in collaborative practice behavior at a moderate level, physicians reported that collaboration existed to a greater extent than did nurses. Shared information mentioned earlier than unshared information. As discussion proceeded, members decreased the amount of shared information but increased not-yet-discussed unshared information. Team leaders repeated more of the case information brought forth. The presence of a pharmacist on team in ICU was associated with substantially lower rate of adverse drug events caused by prescribing errors. After training, aides scored significantly higher on test; attendance at team meetings also increased 60%. Aides were noticeably more outspoken at team meetings. Generally consistent with basic premise of intergroup relations model: As teams become more diverse in terms of identity and organizational group characteristics, intergroup relations suffer and perceived level of team integration declines. Community support team brought about short-term cost reductions.

382

Geriatrics

Chronic diseases

Geriatrics

Mental retardation

Rehabilitation

Mental health

Nursing

Hospice

Hospice

Runyan (1975)

Silliman (1990)

Sipperstein et al. (1994)

Unsworth et al. (1995)

Vinokur-Kaplan (1995)

Wells et al. (1998)

Zimmerman (1994)

Zimmerman & Applegate (1992)

Medical Area

Rubenstein et al. (1984)

Authors

Case study

Quasi-experimental (335) Survey (33)

Survey (98)

Scale study (74)

Survey (567)

Controlled study (142)

Quasi-controlled (1,006)

Controlled study (123)

Method (N)

Interdisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Interdisciplinary

Unspecified

Interdisciplinary

Type of Team

TABLE 17.1 (Continued)

Experimental group experienced lower mortality, less chance of spending time in a nursing home, decreased costs, and increased functional status and morale. Control group experienced an increase in acute-care days, hospital readmissions, and nursing-home days. Treatment group had increased professional or clinical visits, had decreased blood pressure after transfer, utilized fewer hospital days, and had lower mortality rates than did control group. Family caregivers in experimental group were more likely to report good general health but less likely to have good emotional health at follow-up. Physicians had significantly lower expectations and more pessimistic prognoses for children with moderate or severe mental retardation than other professionals. Only consensus was on children with mild mental retardation. There were reliable within-team agreements but considerable between-team differences for housing recommendations for stroke patients. Overall team effectiveness is best predicted by fulfillment of the task according to prescribed standards, group cohesion, and interdisciplinary collaboration. Perceived high physician involvement associated with greater collaboration than perceived low physician involvement. Team members with more complex interpersonal construct systems were less satisfied with team communication and more willing. Greater satisfaction with comforting communication was positively associated with greater satisfaction with team communication; comforting satisfaction was positively associated with team task effectiveness.

Findings

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383

than offer general descriptions, most focus on team processes or the effects of events on teams without explicitly incorporating good measures of outcomes. Only a few studies report group characteristics, structure, processes, and outcomes so that the impact of team dynamics on outcomes can be explored. Schofield and Amodeo (1999) reviewed 224 studies of interdisciplinary health care teams and found that, of these, 86 (38%) had little useful content, 55 (25%) were descriptive, 51 (23%) focused on team processes (mostly anecdotally), 21 (10%) reported systematic empirical observations, and only 11 (5%) reported the impact of teams or team functioning on outcomes. Our own review largely replicated Schofield and Amodeo’s statistics. Clearly there is room for more research in this area. A second set of issues revolves around research design. A problem with many studies of health care teams is that their research designs do not consider a number of factors that are required to understand the source and significance of team effects. These include the actual amount of time with patients (treatment intensity), the point in the treatment process when the team becomes involved, the scope of work (e.g., consultation, active intervention, decision making), and the surrounding organizational context. Indeed, in many articles the treatment itself needs elaboration. Keith (1991) commented that “a perusal of the rehabilitation literature concerning types of treatment programs and their outcomes reveals a curious lack of interest about the specifics of treatment. Descriptions commonly include only a phrase, such as ‘comprehensive rehabilitation’ or ‘inpatient rehabilitation’ to characterize what happened in treatment” (p. 272). In a similar vein, relatively few studies of health care teams incorporate systematic observational methods or formal instruments for measuring characteristics of groups or their processes. Important variables that are often omitted or reported only impressionistically include group size, leadership style, members’ training and experience in management skills, decision-making process, communication pattern, and interaction pattern. Moreover, few studies take into account the situation in which the group works, such as other group memberships or the larger organizational or institutional context. Although research on health care teams must be regarded in light of these two limitations, many of the studies have contributed to our understanding of how health care teams operate, including their communication dynamics. We turn now to a summary of substantive knowledge in this area. COMMUNICATION AND THE EFFECTIVENESS OF HEALTH CARE TEAMS

This review is organized around an input-process-output framework, which assumes that health care groups are best understood as systems. Outcomes

Starting with outcomes is useful, because outcomes are the standards against which team processes are gauged. Hackman and Walton (1986) delineate three general types of outcomes that should be considered in the study of groups: productivity, group maintenance, and member need satisfaction. Productivity is the extent to which the group is performing its work effectively and attaining its goals. Typical gauges of productivity include amount and quality of work and efficiency. In health care studies, productivity is evaluated in several ways, including objective measures, such as mortality and morbidity, length of hospital stay, relapse, and

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compliance with medical regime, and subjective measures, such as patient perceptions of quality of care and patient satisfaction. What is the evidence that group or team care results in higher productivity than traditional modes of delivery? Although some controlled studies have found positive aspects of team care (Hogan & Fox, 1990; Hogan et al., 1987; Jackson et al., 1993; Katon et al., 1999; Leape et al., 1999; McCrone et al., 1994), other studies have found no differences in patient outcomes between team care and nonteam care (Becker et al., 1987; Reuben et al., 1995). Given the mixed findings, it is important to consider possible reasons for the different results.Unfortunately, few studies investigate the linkage between group processes and outcomes, and we could not find a single study that examined differences between groups in terms of processes and outcomes. Despite these limitations, there is evidence in the studies listed in Table 17.1 to confirm Halstead’s (1976) conclusion that team care is (a) generally more effective than nonteam care, (b) responsible for improving or maintaining patient health, (c) usually associated with increased utilization of health services, and (d) open to investigation from many different methodological points of reference. Clearly, though, future studies that examine process in addition to input and outcome will add to our knowledge of how health care teams operate. Group maintenance is the extent to which a group improves its ability to function effectively and increases its integrity as a social unit. As mentioned previously, many case studies of health care teams have focused primarily on how to improve team dynamics and functioning and hence have been concerned with this outcome; however, most of these cases have assessed group maintenance in a loose, impressionistic way. More rigorous measures of group maintenance in health care settings include team morale and cohesiveness and team members’ level of understanding and acceptance of each other’s roles and perspectives (e.g., Weiland et al., 1996). Several studies of health care groups feature maintenance. Baggs et al. (1999) noted that nurses’ reports of collaboration were positively related to patient outcomes, and VinokurKaplan (1995) reported that overall team effectiveness is best predicted by fulfillment of the task according to prescribed standards, team cohesion, and interdisciplinary collaboration. Alexander et al. (1996) found that greater diversity in tenure, age, occupation, and team size was associated with negative assessments of team functioning by team members but that greater gender diversity was associated with positive assessments. Member need satisfaction is the extent to which the group satisfies members’ individual needs. To the extent the group does this, it motivates members to continue to participate actively and also lessens the likelihood of dysfunctional consequences such as burnout or absenteeism. To some extent, measures of satisfaction with the group tap this dimension. Poulin, Walter, and Walker (1994) found that the majority of social workers who were members of teams were satisfied with team membership and report having greater job autonomy, even though they spent more time in meetings and on paperwork and less time with clients than social workers who did not work in teams. Zimmerman and Applegate (1992) studied stress management in interdisciplinary hospice teams and found that satisfaction with comforting strategies was positively related to members’ satisfaction with team communication and perceptions of team effectiveness. (A surprising finding of their study was that amount of training in hospice work was negatively related to use of person-centered comforting strategies.) Although there are many studies of need satisfaction among individual health care workers, we found relatively few studies of health care teams that assessed this outcome.

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Attaining satisfactory outcomes on all three dimensions simultaneously is a challenge for any group. Often groups must trade off one goal against another, hoping that over the long run all three can be met. For instance, a group under high pressure to be productive may temporarily disregard group maintenance or need satisfaction, then later try to reinforce these outcomes through social activities and a period of more relaxed work. Group Processes and Team Effectiveness

In this section we organize the studies on health care groups around two processes important to their effectiveness. The first part of the section focuses on the production goal by summarizing the literature on group work processes and communication. The second part considers group maintenance and need satisfaction goals and centers on the negotiation of roles and on status and power dynamics in health care teams. Almost all studies we have found pertain to these two themes. In the conclusion we will note areas that need more research. Providing Care: Group Structure, Task Communication, and Collaboration

This section discusses four factors that influence the effectiveness of health care groups in carrying out their work: complexity, diversity, autonomy, boundedness. Each of these poses challenges that must be met by the group if it is to provide effective care. Medical Work and Group Processes. Perhaps the key parameter influencing group effectiveness is the fit between group structure and processes, on the one hand, and the group’s work on the other (Hackman & Morris, 1975; McGrath, 1984). The group’s work, typically conceptualized as a collection of more or less interdependent tasks, must be pursued using a proper combination of structures and processes. Feedback on its effectiveness and problems it encounters push the group to adopt structures and processes that meet the demands of its work, and failure to adapt means that the group will be less effective. Evidence regarding this relationship can be found in studies that investigate the relationship between variables from two or more of the following classes: group work (generally defined in terms of group tasks), group structures, group processes, and effectiveness (generally defined in terms of group productivity). One key variable is the complexity of the group’s work. Wood (1986) developed a general definition of complexity in terms of three analytical facets: component complexity, the number of distinct acts that must be executed and the number of cues that must be processed during task performance; coordinative complexity, the amount of coordination required among cues, acts, and people during task performance; and dynamic complexity, the degree to which actors must adapt “to changes in the cause-effect chain or meansends hierarchy during task performance” (p. 71). In studies of health care groups, work complexity has been conceptualized and measured in several ways, including (a) task variability, the degree to which the tasks the group undertakes vary over time and the number of exceptional cases encountered (e.g., Argote, 1982); (b) task clarity (an inverse indicator), the degree to which the members can define and agree on what the group’s basic set of tasks are (Beckhard, 1972); (c) uncertainty, the degree to which members could predict their workload and the tasks they would be called on to perform (Argote, 1982; Schoonhoven, 1981); and (d) complexity of the medical problem, as indicated by

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the number of ailments, degree of interrelation among them, and length of time in care (Drinka, 1996; Fountain, 1993; Kresevic & Holder, 1998; Ogland-Hand & Zeiss, 2000). In general, the higher the task variability, uncertainty, and complexity of medical problems and the lower the task clarity, the more complex the group’s work. Based on Van de Ven and Delbecq (1973), we can distinguish three types of group systems appropriate for different levels of work complexity. At low levels of complexity, routine group systems are most effective. Routine group systems are characterized by (a) standardized work procedures with clearly defined assignments; (b) centralized (authoritarian) leadership and decision-making; and (c) communication processes that emphasize hierarchical communication flow, regular formal meetings, and the use of formal communication modes such as forms and databases. At moderate levels of complexity, programmed group systems are most effective. Health care teams with programmed systems have (a) flexible work procedures that rely on rules, procedures, and programs; (b) decentralized (participatory) leadership and decision-making; and (c) two-way, informal, active communication. Contrary to a common assumption, rules, procedures, and programs allow members greater freedom to take actions and decisions on their own, thus promoting decentralization and flexibility while maintaining quality care. For high levels of complexity, adaptive systems are best. Teams with adaptive systems do not have welldefined procedures but instead leave members free not only to apply programs but to adapt and innovate. They rely on highly trained members to improvise in response to uncertain conditions, and they stress participatory decision making more than programmed systems. Adaptive group systems are very communication intensive, as members interact to solve problems and create novel approaches. Consistent with research on other types of groups, studies of health care teams indicate that work complexity is related to particular configurations of structural and process characteristics that are adapted to varying levels of complexity. Two kinds of evidence can be marshaled in support of this claim. First, studies of health care groups suggest that work complexity is related to the nature of the group system. A survey of 135 nursing units by Leatt and Schneck (1984) found that uncertainty was positively correlated with decentralized management, communication among coworkers, use of formal controls, and clear role definitions, and it was negatively correlated with communication with the head nurse and structural differentiation of positions. In our terminology, routine systems were employed for low complexity work and programmed systems for higher complexity work. The units surveyed by Leatt and Schneck ranged from low to moderately high levels of complexity, so this study reveals little about groups facing very high complexity. Nor did Leatt and Schneck measure outcomes. Case studies of health care groups also lend support to the correlation of complexity and system type. Of the 30 cases we reviewed, programmed systems were used for complex medical care, such as geriatric care (Becker et al., 1987; Feiger & Schmitt, 1979; Hogan & Fox, 1990; Hogan et al., 1987; Reuben et al., 1995), rehabilitation (Cohen et al., 1992; Unsworth, Thomas, & Greenwood, 1995), mental health (Alexander et al., 1996; Jackson et al., 1993; Vinokur-Kaplan, 1995), psychiatric care (Fuller & Jordan, 1994), social work (Abramson & Mizrahi, 1996), child development (Bailey, Buysse, Simeonsson, Smith, & Keyes, 1995), pharmacy (Leape et al., 1999), and comprehensive community health care (Beckhard, 1972), and also for dealing with unstructured problems, such as occur in quality improvement (LaVallee & McLaughlin, 1994) and emergency room care (Argote, 1982). Routine systems, on the other hand, are more common in hospital units, which deliver regularized services (Rundall & Hetherington, 1988), and they have been found

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in dietetics as well (Fisher & Opper, 1996). Contrary to the hypothesis, however, Baggs et al. (1999) found that hospital intensive care units can operate as both routine systems and programmed systems. Two quantitative studies directly test the idea that the match between task complexity and group system is related to effectiveness. Schoonhoven (1981) studied the impact of the organization of surgical teams on severe morbidity. She found that work units with higher levels of uncertainty were more effective if they had decentralized decision-making and staff were given control over their work schedules. Conversely, units with lower levels of uncertainty were more effective with more centralized structures (characteristic of routine systems). Argote’s (1982) study of emergency rooms indicates that under conditions of high uncertainty, units with high levels of staff autonomy, general procedures, and mutual adjustment among members were most effective, whereas under conditions of low uncertainty, units with scheduled meetings, centralized authority, and tightly specified procedures were most effective. Both studies support the premise that programmed systems are more effective at higher levels of work complexity and that routine systems are more effective at lower levels. Rundall and Hetherington (1988) reported a survey of the clinical departments in a multihospital system that is consistent with these conclusions. High levels of uncertainty were correlated with decreased coordination among units that were centralized and had routinized procedures and specialized jobs, with a resulting decrease in quality of care. Work groups with decentralized structure, less rigid procedures, and more flexible jobs did not display this decrease in coordination and maintained higher levels of quality of care. Feiger and Schmitt (1979) conducted quantitative case studies of four interdisciplinary teams and found that the team with nondirective, consultative, and engaged interaction (characteristic of programmed systems) was more effective than teams with more authoritarian leadership centered around the physician. The structure of units has also been shown to influence communication in teams. Thomas (1994) studied communication in nursing units organized around two routine systems (functional and primary wards) and a programmed system (team wards). She found that units with primary nurses assigned to each patient exhibited more effective communication than did functional or team wards. In view of the nature of the tasks generally undertaken in nursing units, a routine system is more appropriate, and Thomas’s results are consistent with this surmise. This study also suggests that there are variants of the systems and that some of these are more effective than others. Diversity, the range of different disciplines and specialties in a health care group, is another important factor that influences work processes. Diversity is positively correlated with work complexity in that effective treatment of complex cases tends to require a more diverse set of professionals. It is also positively related to group size in that more diverse groups tend to be larger. A number of studies report that coordination problems increase as diversity increases (for summaries, see Beckhard, 1972; Couchman, 1995; Nagi, 1975; case studies include Keith, 1991; Simon, 1999; Vinokur-Kaplan, 1995; for a survey study supporting these results, see Lichtenstein et al., 1997). Diversity creates coordination problems in several ways. First, different professions often conceptualize medical work differently. Whereas an internist is trained to focus on physical maladies, a psychologist thinks in terms of counseling, and a social worker is taught to focus on helping patients manage their social milieu (Couchman, 1995). Similarly, Simon (1999) observed that neurosurgeons and biophysicists sometimes made widely different estimates of the difficulty of treating cancers based on their professional predispositions. Professions may differ in terms of their models of care, treatments (including durations), methods of assessing patients, and contact with patients (Couchman, 1995;

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Horwitz, 1969). These differences may foster miscommunication, misunderstanding of how members of other professions fit into the group, and conflicts when diagnoses or treatment regimes contradict each other. The specialization that comes with diverse health care groups may also decrease the effectiveness of patient care. Keith (1991) noted that ineffective coordination among specialties may decrease patient independence. If each specialty gives the patient orders for care, the patient’s ability to make his or her own decisions becomes sapped, especially when the orders conflict. Larson, Christensen, Abbott, and Franz (1996) conducted an experiment with physicians that indicated that shared information—more likely to occur among medical personnel with similar training and experiences—has a higher probability of being discussed in medical teams. This study suggests that diverse teams should pay special attention to the generation of mutual knowledge and the surfacing of unique information. It also points to an essential team leader responsibility: to highlight information not held by most members. Also of interest is their suggestion that, properly utilized, the medical chart could facilitate this process. In addition to differing in their approach toward care, health professions may also differ in their approach to working on teams. A survey by Abramson and Mizrahi (1996) found that physicians and social workers held different views of collaboration. Social workers were more interested in the process of collaboration, whereas physicians were more interested in the outcome or product. Social workers asked to report positive and negative experiences in collaborating with physicians emphasized the themes of quality of interaction and respect (or lack thereof) from physicians. Most physicians, on the other hand, touched on the competence of the social workers (or lack thereof). Of interest was the finding that physicians agreed less in their definitions of effective collaboration than did social workers. Attitudes toward collaboration are also shaped by professional training that fosters an authoritarian, “take charge” attitude. This type of training, common in the case of physicians, poses a barrier to trust among professionals and a barrier to power sharing. As Beckhard (1972) noted, “An internist trained to a doctor-patient relationship may have real difficultly in ‘sharing’ the patient with other health workers” (p. 311). Although diversity poses coordination challenges, it also provides a rich resource base for the group. Handled properly, diverse groups may be more effective and more creative than more homogenous groups (Larkey, 1996). There are at least two ways to use diversity effectively. First, the group members can develop a well-defined division of labor that specifies the areas each profession covers and how the various professions will be coordinated. This multidisciplinary approach substitutes for communication because most decisions about coordination are already made and who will handle exceptions is identified. Wilson’s (1954) classic study of teamwork in the operating room articulates this approach admirably (see also Frank, 1961). Second, members of the team can attempt to develop an understanding and appreciation of each other’s professional perspectives. Drinka (1994) stated that “collaboration requires that team members recognize conflicting views, contribute appropriate expertise, and discuss new possibilities” (p. 88). She argued that the management of interdisciplinary conflicts is a critical indicator of collegial interaction. Group development interventions have been worked out to facilitate the communication necessary to promote interdisciplinarity in groups (Sandor, Copeland, & Robinson, 1998; Vinokur-Kaplan, 1995). Curricula for professional schools that prepare members for collaboration have also been proposed and implemented (Clark, 1997; Couchman, 1995; Drinka, 1996). In the case of transdisciplinary teams, members “cross-train” one another, enabling them to substitute for each other in many care situations.

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Autonomy refers to the degree to which the group has control over major decisions regarding structure and personnel and how care will be delivered. Multidisciplinary and interdisciplinary health care teams often operate using a “matrix” structure. That is, personnel from functional units are assigned to the team but are still formally under the command of their functional unit head. Thus, the members are subject to dual control. This arrangement may cause several problems that have the potential to reduce group effectiveness. If functional unit managers retain more power over promotion and compensation than the team has, then members will be driven by incentives from outside the team itself, undermining group cohesiveness and motivation to collaborate. Team members’ strong identification with different functional departments can have many of the same deleterious effects as disciplinary differences in professionally diverse teams (see Butterill, O’Hanlon, & Book, 1992). Lichtenstein et al. (1997) found the following: If a team is not adequately bounded [in our terms, autonomous], the conflicts and relationships that exist in the larger system between occupational groups such as physicians and nurses, between newer and older organizational members, between members of different generations, or between males and females may also be experienced by members of the same team who represent these groups. (p. 417)

Cross-cutting communication channels may also introduce confusion and misunderstandings in teams that are matrixed (Beckhard, 1972). Demands of the functional unit and the health care group may conflict. Finally, if administrators control the functional unit and govern the decision making of active health care personnel, the quality of care may be compromised. For a health care group to function effectively, the lines of authority must be clear and authority should be vested where the information necessary for making decisions is most accessible. Because matrix structures create ambiguous authority relationships, the leader of the health care group and the leader of functional group must communicate effectively and form a good relationship (Butterill et al., 1992). Establishing clear boundaries for the group and effective relationships with other groups and units is also important, as is shown below. Boundedness. In the previous quotation, Lichtenstein et al. introduced an important correlate of autonomy, boundedness, which is the extent to which the group has clear boundaries and functions as an independent entity. In general, the more unstable and fluid the group, the lower its boundedness. Low boundedness is characteristic of many health care teams, as the members often have multiple team assignments. The only occupational therapist in a geriatric facility, for example, may be assigned to all four of its treatment units. The amount of time the therapist dedicates to any given unit will ebb and flow, depending on demand and the treatment philosophy of the unit. Ogland-Hand and Zeiss (2000) observed that in many multidisciplinary and interdisciplinary health care groups, each member has regular contact with “segments” of the team and must initiate contact with members outside these segments in order to interact with them at all. To overcome problems due to boundedness and the bona fide nature of most health care groups, teams need to create opportunities for communication among members who are overworked or “just passing through.” Ogland-Hand and Zeiss (2000) noted that meetings supposed to be dedicated to maintaining a team’s “minimum data set” afford opportunities for members to interact and work out problems and issues. Other such opportunities include screening meetings, shift change reports, medication reviews, and team rounds (Kresevic

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& Holder, 1998; Ogland-Hand & Zeiss, 2000). Simon (1999) and Wilson (1954) both commented on the importance of socializing as a means of maintaining the team and also of managing the tension inherent in medical work. Comments. An interesting problem with much research on work processes in medical groups is that it rarely studies directly the impact on outcomes of the fit of processes and structure to the demands placed by factors such as complexity, autonomy, and diversity. In many cases, the variables in each category are simply related to effectiveness one by one, and the combinations of variables are not considered. More complex models of the influences on health care group effectiveness are needed. A second observation is that this research does not give much consideration to outcomes other than productivity or quality. Although perhaps understandable from the perspective of health care delivery, outcomes related to group maintenance or member need satisfaction receive less attention than they should. Some of these outcomes have been addressed to a greater extent in the literature on negotiation in health care groups. Negotiating: Roles, Power, and Conflict

The negotiation of roles, status, and influence in health care groups is promoted by professional identities, the nature of the work itself, and the bona fide nature of health care groups. Most members of health care groups—physicians, nurses, social workers, psychologists, occupational therapists, and others—are also members of professions that encourage them to maintain certain standards of care and to increase their own influence in the group to further this end (Ducanis & Golin, 1979). Because different professional viewpoints are not always compatible, struggles for control, implicit or explicit, are probably inevitable. Although there is a rough pecking order among professions (i.e., those with an M.D. degree generally enjoy higher status than those with a master’s or Ph.D.) and within each profession, there is still sufficient ambiguity to encourage members to lay claim to preferred roles and attempt to increase their influence. Keith (1991) documented a good example in his discussion of how physiologists and orthopedic surgeons often contend for leadership in geriatric rehabilitation units. The nature of medical work also encourages negotiation. The complexity of the work confronting health care teams can lead to uncertainties that can only be resolved through agreements among members about what should be done and who should do it. Most studies of negotiation of the order in medical groups have centered on groups that engage in complex, uncertain work, such as mental health care (Schatzman & Bucher, 1964), but negotiation processes have been observed on hospital wards (Stelling & Bucher, 1972). Negotiation of work occurs on two levels in health care groups: on the individual level, negotiation of the division of labor, responsibility, and authority, and on the meta-level, negotiation of who has the right to determine the division of labor, responsibility, and authority. A third factor that promotes negotiation is the bona fide nature of health care groups. The turnover of members, the temporary addition of specialists and others to the working group, and the uncertain boundaries of many health care groups necessitate negotiations to handle disruptions in the group and to reconsider the established order when it is called into question by changes. Negotiation influences all three group outcomes: it helps to determine work processes and patient outcomes, it structures the group and influences its level of functioning as a unit, and it affects whether members meet their own needs. Although some members are

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aware of the role of negotiations in determining their position in the health care group, it is safe to say that many are not. These latter members maintain a focus, not on negotiation per se, but on patient outcomes or their own fulfillment at work. Negotiations in a health care team may occur during conflicts, but they may also occur more subtly, in micro-level transactions about how the team will operate. The rules that govern the roles of various professionals in health care teams are ambiguous, leading to necessary and continual negotiation (Geist & Hardesty, 1982; Strauss, Schatzman, Bucher, Ehrlich, & Sabshin, 1964). Schatzman and Bucher’s (1964) classic study of the division of labor on the wards of a mental hospital provides important insights into the nature of negotiation in health care groups. The researchers found five distinctively different role and status structures in five wards with roughly equivalent staff compositions and tasks. These structures were the product of negotiation within the context of the medical ideology that prevailed in the ward. The ideology (itself a product of negotiation) established which members were in a position to make authoritative claims and shaped the types of claims that were regarded as valid. In a ward where psychotherapy was the established ideology, the psychiatrist was held to be most qualified to make claims about what various members should be doing, and arguments had to be cast in psychiatric terms to succeed. In another ward, which emphasized transactional therapy, all professional staff members were regarded as equally qualified to serve as “parent,” and the patients were divided into four groups, each working with one of the professionals. Negotiation is often triggered in health care teams by their constant struggle to clarify and manage ambiguities regarding role expectations. Beckhard (1972) noted that medical roles are continuously evolving in society, and the evolution of roles tends to undermine or problematize even the most carefully planned structures. The undermining of structures can be beneficial if it encourages needed adaptations. It can also have potentially negative effects if the ambiguity is used to shift responsibility or duties onto members inappropriately. Some commentators (e.g., T. M. Brown, 1982) have suggested that when nurses, social workers, and psychologists became more common on health care teams, some physicians implicitly delegated them the role of providing for the patient’s social and emotional needs and neglected this aspect of care themselves. Knight and Field (1981, described in Thomas, 1994) studied a cancer care ward in which more qualified nurses gravitated toward administrative and management tasks, leaving most of the direct patient care to junior nurses and nursing assistants. Dealing with patients’ anxiety about their condition was a particularly taxing aspect of their roles for the junior nurses and nursing assistants. Knight and Field reported that many evaded this type of interaction by working in places on the ward where they did not have to communicate with troublesome patients or by indicating by their actions that they had no time to talk. Clark (1997) described how the discourse of medicine external to the group may also shape role negotiations. According to Clark, the traditional “voice” of medical practice constructs the reality of the patient’s condition according to medical imperatives that distance the practitioner from the patient as well as depersonalize and decontextualize the patient in the interest of “objective” clinical judgment. “Nursing and social work, on the other hand, have countervailing pressures to take on a real understanding of the ‘patient as a person’” (p. 448). This discourse can thus channel role negotiations so that the physician specializes in those parts of work that are concerned with the patient’s “objective” health status and the nurse specializes in “social” and “personal” aspects of care (T. M. Brown, 1982). Negotiations over division of labor in a group can be triggered by the resistance of those whose voice was silenced by the ideology, by problems with patients, or by coalitions of lower status members (Shatzman & Bucher, 1964). Many of these negotiations occur

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“tacitly” as members work together. In a fascinating study of imaging groups, Simon (1999) described how neurosurgeons and biophysicists jockey for professional prominence in sharp arguments over the interpretation of images. The degree to which negotiation occurs is also influenced by the degree of “domain consensus”—the degree to which there are generally accepted roles and divisions of labor—in a particular area of health care (Lammers & Krikorian, 1997). Surgery tends to have a high level of domain consensus (e.g., Wilson, 1954), whereas community medicine has a relatively low level (e.g., Banta & Fox, 1972). Negotiations are also shaped by the professional styles of group members. Banta and Fox’s (1972) classic study illustrates the different perspectives that health care professionals have on complex social problems, as evidenced by the conflict between community health nurses, social workers, and physicians in their struggle to define the team’s mission. Abramson and Mizrahi (1996) reported that the social workers in their study focused more on interaction with the physicians, and that the physicians focused more on the competence of the social workers, indicating that the higher status of the physicians allowed them to judge the competence of social worker. The numerous articles advising nurses (Fountain, 1993), social workers (Horwitz, 1969), and mental health professionals (Couchman, 1995; Lorenz, Mauksch, & Gawinski, 1999) on how to interact with physicians testify to the importance and potential impact of style differences in health care teams. They also indicate that resistance to the presumption of physician control and advocacy for increased input are explicit parts of the discourse of these professions. The interdisciplinary team literature emphasizes the need for mutual respect and power sharing among members of health care groups (e.g., Clark, 1997; Drinka, 1996; Sandor, Copeland, & Robinson, 1998). However, countervailing forces, including the assertiveness of professions and established status and power structures, tend to lead to the reassertion of physician dominance as teams progress (Freidson, 1970; Nagi, 1975). Indeed, Brown, Crawford, and Darongkamas (2000) reported that professional boundaries can often be actively reinforced by the experience of interdisciplinary teamwork as members struggle to clarify blurred identities introduced by the demands of collaboration. Drinka (1996) noted that one of the problems introduced by the expanding role of nurse practitioners and physician’s assistants in primary care is the anxiety and tension it produces among physicians, which may lead to their rejection of team models (see Williams, 1992). In one of the few studies that systematically coded group interaction, Feiger and Schmitt (1979) found that even in teams initially committed to interdisciplinary collegiality, status differences reasserted themselves over time. Of interest was their finding that the team that best resisted the erosion of collegiality provided the best care. The negotiations that occur in health care teams have their share of conflict. Several factors, including the complex and pressing work, the strong authority position of the physician, and hesitancy to confront professionals outside one’s own discipline, encourage avoidance or suppression of conflict (Drinka, 1996; Folger, Poole, & Stutman, 2000). Sands, Stafford, and McClelland (1990) found that conflict within interdisciplinary teams was expressed both overtly and covertly within a format that required the team to reach consensus in a short period of time. However, Drinka (1994) proposed that the “maturity” of a health care team could be gauged by how it handled conflicts. She found evidence to suggest that the team “survived over time because there were leaders who were willing to try out new ideas and confront conflict” (p. 123). Through dealing with conflict effectively, groups are often able to build stronger relationships among members based on the trust that “things will work out” and the good will that constructive behavior generates (Folger et al., 2000).

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Although most negotiation research has focused on role negotiation, negotiation processes can also extend to the social construction of medical work in the team. In the previous discussion of task complexity, there was an implicit assumption that teams had more or less stable tasks that were defined independently of team processes. However, the members of health care groups also have a hand in task definition and redefinition. As mentioned in the discussion of diversity, different professionals are likely to interpret and define tasks differently based on their particular specialties. A social worker is most likely to focus on aspects of a case related to community, family, and personal issues and problems, whereas an internist will focus on organic physical problems. The definition that predominates will determine how the case and the care tasks are are interpreted. Schatzman and Bucher’s (1964) study provides some evidence that this does indeed occur. Personnel in four of their five wards interpreted their therapeutic tasks differently depending on the treatment ideology that prevailed (and whether the physician, psychiatrist, psychologist, or social worker perspective dominated the discussion). Further, the prevailing ideology shaped the work members undertook and how they evaluated their own effectiveness. Vinokur-Kaplan (1995) observed that a social worker would define geriatric care as inherently involving the patient’s significant others in decision making, whereas for members of other professions such a concern would not necessarily be so important. Although inclusion of negotiation processes certainly muddies the relationship between team structure, processes, and outcomes, it is important to consider. Comment. As the review indicates, research on negotiation in health care teams is broad and deep. However, one striking characteristic of these studies is their tendency to push outcome variables—in particular, the consequences for the patient—into the background. Negotiation studies focus attention on the members of the team or unit and their struggles to define and carry out their work. Less attention is given to effectiveness of health care units or teams. CONCLUSION

A large and growing literature contains many insights about health care teams, communication, and effectiveness. This literature suggests that health care teams can be organized in a number of different ways. The six team types identified in our review—nominal, ad hoc, unidisciplinary, multidisciplinary, interdisciplinary, and transdisciplinary—embody different assumptions about how care should be delivered, the relationships among health professionals, and communication practices in health care teams. As this review indicates, multidisciplinary and interdisciplinary teams have received the lion’s share of attention in formal studies of health care teams. There is a need for more studies on the other types of health care teams. It is also important to note that the team types represent not only empirical descriptions, but also embody ideologies concerning the “right” way to care for patients. As we conducted this review we found it difficult at times to determine whether findings were fair and even-handed or were tainted by ideological biases. Although the team types are useful, they may also straightjacket thinking about health care teams. It is easy to move from thinking that a team is organized around a certain set of principles (e.g., “interdisciplinarity”) to thinking that it always behaves in that mode. The few studies that offered in-depth descriptions, as well as our own experiences, indicate that the same team may carry out some activities in an interdisciplinary manner and others in an unidisciplinary manner. For instance, a pediatrics practice might rely on an egalitarian discussion among all members to rate child functioning (see Bailey et al., 1995) but then

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turn over major care decisions to the physicians. The shifting modalities of work in medical care groups may be ignored in a scheme that puts too much emphasis on absolute team types. One promising direction in this area is the development of contingency theories relating (a) team structure and processes, (b) contingency variables such as task or team composition, and (c) effectiveness. The basic premise of such theories is that, depending on the contingencies facing the team, some structures and processes will result in more effective team functioning and improved patient care than will others. Our review indicates that progress has been made toward specifying such a theory based on the contingencies of task complexity and diversity of group composition. However, the ability to relate team structure and communication and workflow processes to these contingencies is tempered by factors such as the degree of autonomy the team enjoys and the fact that health care teams must constantly struggle with shifting memberships and boundaries in an ever changing environment. Although contingency theories hold promise, their ability to explain the relationship between the communication and effectiveness of a health care team will be limited by the degree to which the team works in what Putnam and Stohl (1990) have called the “bona fide” group situation. The multiple standards that can be used to judge effectiveness also complicate theories of communication and team outcomes. If productivity and quality of care are important criteria, so too are maintenance and development of the team and satisfaction of member needs. Without meeting these latter two criteria, even teams that deliver very high quality care will eventually degrade and lose the people who make them effective. The frequency with which conflicts can develop between different goals poses a key challenge for health care teams. For instance, doing excellent work often requires a focus on task that detracts from developing relationships among team members or attending to the needs of individuals. Theories should take into account the tensions between effectiveness criteria and develop models showing how these might be handled effectively. The sheer number of different professional and ancillary roles in health care teams is one of their most distinctive and interesting features. This makes the process of role negotiation a critical area of inquiry for communication research. Role negotiation is common and continuous in health care teams. Some is explicit, most is implicit, accomplished gradually through the patterning of interaction among team members and between team members and clients. Power and status play an important role in negotiations; those with greater amounts of each naturally tend to dominate negotiations and partition work in ways that suit them. Negotiations are influenced by the discourse of the professions represented on the team: physician discourse presumes the importance and leading role of doctors, whereas the discourse of nursing, social work, clinical psychology, and other professions stresses the need to establish the legitimacy of nonphysician roles and to advocate for more significant input into the care process. Role ambiguity and the resulting negotiations can also give rise to conflict in health care teams. The suggestion by Drinka (1994) that some teams have more capacity than others to manage and learn from conflict points to an interesting direction for future research. An important theme in studies of role negotiation in health care teams should be the impact of the negotiations on quality of care and other patient outcomes. However, most studies focus almost solely on the negotiations themselves and leave outcomes as a sidebar. Studies of the impact of nursing ward organization indicate that quality of communication with patients is affected by informal reorganization due to role negotiations (Thomas, 1994). This and suggestive sidebar comments from the role negotiation studies suggest that the negotiation-outcome relationship is an important focus of future investigation.

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The role of negotiation in the social construction of the team’s tasks is another topic worthy of further research. The contingency model treats tasks as independent of team structure and processes. However, as noted above, negotiation processes do not just influence how the work is done, they often define and construct the task set that the team engages in. Greater understanding of how medical work is constructed in teams can enable us to better gauge the limits of contingency models. The burgeoning literature on the social construction of medicine can provide useful insights and guidance in this inquiry (e.g., Georges, 1996; Koenig, 1988). The review of methods used in health care team research suggests some improvements. In particular, more rigorous, careful studies of team communication and its relationships to exogenous and outcome variables are needed. Most research on health care teams has utilized an input-output model in which the characteristics of the team and its outcomes are studied, but little rigorous attention has been paid to team processes. And when processes are studied, the most common practice is to report summary impressions of the communication and interaction processes that occurred in the teams rather than analyze them systematically. Another shortcoming of studies in this area is that they do not control for the amount and type of care given or characteristics such as team size, composition, and history, which makes it difficult to compare across teams. Future research should include these variables. There are several areas that remain largely unexplored in research on health care teams. Although most studies focus on internal processes of health care groups, Ancona (1987) marshals significant evidence that relations with external groups and individuals may be a stronger influence on group effectiveness under some circumstances. Boundary spanning or attention to external relationships is particularly important for health care groups embedded in the matrix structure discussed above (Hirokawa, DeGooyer, & Valde, in press). The group’s leader must maintain good relations with managers of functional units and legitimate the approach to care that the unit takes to ensure that unit managers assign good personnel to the group and do not interfere in group functioning (Butterill et al., 1992). Members must make their functional mangers aware of the importance of the group and keep up with their work in the functional unit. Another key boundary-spanning role is justifying the team’s action and decisions to management. Drinka (1996) argued that an important part of managing an interdisciplinary health care team is recognizing its position in the organization and working to maintain the legitimacy of the team in the eyes of upper management. Boundary spanning in health care teams has not received much attention in formal research and is an important area for future inquiry. A related topic that should be explored is interteam relationships. Health care team development is another relatively neglected process. Implicit within many studies of team effectiveness is a model of team development. When explicit models are offered (Drinka, 1994; Ogland-Hand & Zeiss, 2000), they are straightforward adaptations of the traditional “forming,” “storming,” “norming,” and “performing” stages of group development based on global observations rather than detailed analysis of group interactions and activity. Detailed and systematic studies of medical team development would enable us to move beyond this overly simple view and consider issues such as changes in the relationship of members from different disciplines and specialties and the management of complex tasks over time. In view of the emphasis on developing interdisciplinary teams, one particularly important type of change involves shifting the structure of the team so that all members are allowed input on decisions and activities. As we have noted, however, this requires physicians to set aside their traditionally dominant position and treat members of other professions and disciplines as peers. Maintaining this balanced

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structure is difficult, and there is a tendency for the traditional physician-dominated arrangements to reassert themselves. Longitudinal studies of health care teams could clarify how this occurs and how teams could be managed to create and sustain collegial relationships among members from different disciplines and specialties. A final understudied area is “unteamworthy” behavior. Negative behavior such as browbeating, ostracism, and harsh attacks can cause stress and otherwise discomfit members. Teams with complex, stressful work and power differentials are especially likely to experience such behavior as a reaction to their difficult situations. The frequency, causes, and impacts of this behavior on health care teams are in need of research. Another type of exceptional behavior, whistleblowing, is a sensitive subject in much of the health care literature, in view of its legal implications. Erde (1982) noted that professional norms require reporting incidents that represent negligence of or harm to patients, but group norms grounded in collegial decisions-making and collegial relationships act as disincentives. Erde argued that the ideology of teamwork is often used to suppress dissent and curtail or punish whistleblowers as “uncommitted” members. The dynamics of team communication surrounding ethically driven behavior such as whistleblowing offer an important horizon for future research. Teams are arguably the cornerstone of modern medical care. Communication is the cement that holds teams together and joins them to the organization. Three decades of research on health care teams has offered some insights on the relation of communication to team organization, work processes, and effectiveness. However, much remains to be discovered, and we hope that the next generation of studies will expand the horizons of our knowledge an order of magnitude beyond what we now have. ACKNOWLEDGMENT

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18 Organizational Rhetoric and Healthcare Policymaking Charles Conrad Texas A&M University

Holly Gene McIntush Texas House of Representatives

Health policies and policymaking play a central role in almost every dimension of health communication (Miller & Ryan, 2001). Sometimes the effects are direct, as when laws mandate HIV testing of pregnant women, regulations forbid providers from discussing abortion as a treatment option, or negotiated settlements in state lawsuits against tobacco companies allow those companies to veto public health messages that are excessively graphic, condemning, or potentially effective. Sometimes the effects are indirect, as when laws allow HMOs and insurance companies to impose treatment-related gag rules on providers, Medicare regulations inadvertently encourage providers to diagnose patients in ways that maximize allowable charges for their treatment, or various policies create incentives to favor acute over preventative care (Moon, 1996). Given its importance, it is especially disconcerting to note that the healthcare policymaking process in the United States seems to be especially irrational and nonsystematic. The titles of a series of recent studies express this feeling: Reagan’s The Accidental System (1999) describes overall U.S. policy; Hacker’s The Road to Nowhere (1997) and Skocpol’s Boomerang (1996) trace the development and demise of the most recent federal effort toward comprehensive policymaking; and Aaron’s The Problem That Won’t Go Away (1996) and Kleinke’s Bleeding Edge (1998) offer little hope that a more coherent system will emerge in the near future. Conversely, formal organizations, both inside and outside of the healthcare sector, historically have had major effects on healthcare policy. Most often this influence occurs out of public view, through direct lobbying of legislators and members of the executive branch (Biersack et al., 1999; Goldstein, 1999). But recently organizations have engaged in rhetoric that has the goal of directly influencing public opinion on healthcare issues and policies. In this chapter we enter into the quagmire that is U.S. healthcare policymaking. In doing so, we have three goals in mind: (a) to summarize contemporary models of

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the policymaking process, including the role that organizational discourse plays in it; (b) to examine the distinctive complexities of healthcare policymaking; and (c) to briefly illustrate those processes and complexities in an analysis of the development of Medicare. In the process we argue that the fragmented and incoherent nature of U.S. healthcare policy is not “accidental,” as Reagan’s title suggests, but instead is inherent in a complex interaction between the structure and processes of policymaking, the ideological bases of health discourse, and the rhetoric of healthcare reform. TRADITIONAL VIEWS OF PUBLIC POLICYMAKING

During the 2 decades after World War II, two highly rationalistic perspectives dominated theories of public policymaking in what came to be called the “community power debate.” Both started with the assumption that democratic governance is defined by conflict and competition, and both purported to describe and explain the processes and outcomes of public policymaking (Schattschneider, 1960, p. xvii). One approach, grounded in the work of Floyd Hunter (1953), C. Wright Mills (1959), Robert Michels (1958), and Talcott Parsons (1967), focused on the role that interest groups play in policy formation and implementation. Leaders of elite groups draw on a reservoir of private information, interpersonal connections, and political skills to ensure that policymaking fosters their individual interests, often in ways that contradict and undermine broader public interests (Adamany, 1975; Greider, 1992; Laumann & Knoke, 1987; Stone, 1987). When combined with cultural processes that generate psychological deference to authority figures by nonelites, elites can develop policy “oligarchies” that rule democracies through an “iron law” (Barker, 1993; Clegg, 1989, esp. chap. 3; Schattschneider, 1960). Developing public policy in public is threatening to power elites. Open policy conflicts can lead to the formation of coalitions of low-power actors that may upset political power balances, and it may even undermine the psychological processes that generate deference to elites (Vogel, 1989). Consequently, elites favor private management of differences through stable political processes and economic structures in which outcomes are more easily controlled. Elites can privatize conflicts through a variety of strategies, ranging from direct suppression through the power of the state, to manipulating formal rules so that decisions can be made in private, to quietly implementing policies in ways that violate their purpose (Deetz, 1992; Schattschneider, 1960; Stone, 1988). Conversely, nonelites generally prefer policymaking open to public scrutiny because it provides opportunities to broaden the scope of the conflict to include additional nonelites, perhaps creating coalitions that exceed a “minimum winning size” (Katz & Kahn, 1979). However, even if nonelites are able to overcome the elites’ advantages and successfully “go public” with a particular issue, the elites still can displace the conflict to other issues. Consequently, the most fundamental contested terrain in public policymaking is the policy agenda itself (Riker, 1980, 1982). The key research questions for elite theorists are these: (a) How can researchers determine which elite groups dominate particular political systems? (b) Under what circumstances and through what processes can nonelites upset social or political structures?1 1 Elite theorists attempt to assess power relationships by examining the outcome of key decisions or by determining the identity of persons who occupied formal leadership positions and/or who were reputed to be power holders by members of a given community. Each of these approaches is problematic, particularly since elite theory presumes that power holders do everything possible to disguise community power relationships. For a more extensive summary of the resulting “community power debate,” see Clegg, 1989; Conrad, 1983; and Domhoff and Dye, 1987.

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A second approach to understanding policymaking was initiated by Robert Dahl and his associates during the late 1950s. Pluralist theory accepts the elite theorists’ notion that political power is vested in interest groups but argues that all-important social and political interests become organized and are represented in public policymaking. Group alliances constantly coalesce, divide, and re-form as significant issues are debated on the public agenda. The fragmented structure of the U.S. political system combines with the give and take of interest group politics to ensure that no single group or coalition of elite groups dominates policymaking (Adamany, 1970; Clegg, 1989; Stone, 1988, p. 20, note 6). As a result, although democratic structures and underlying processes may remain stable, decision making is constantly in flux as new issues occupy the attention of decision makers, old coalitions are discarded, new ones form, and new issues come to the fore. This pluralist model rapidly became the dominant perspective in political science— and just as rapidly encountered attack (Domhoff, 1967; Miliband, 1969). Most important, critics argued, the pluralist model simply is not empirically viable. Where Dahl argued that the United States is an inclusive pluralist system, critics demonstrated that American pluralism systematically excludes many groups based on class, race, and gender. Where Dahl concluded that major political actors represent a wide variety of interest groups, each of which has some political resources available to them, critics noted that some interests are not represented at all and that political resources are inequitably distributed among those that are represented.2 The pluralists asserted that, although each elite group may be internally oligarchical, competition among them keeps the system as a whole from becoming oligarchical. In response, critics complained that competition among a nonrepresentative group of elite oligarchies simply does not produce a balanced, representative pluralism (see especially Newton, 1969; Wright, 1985). Even in New Haven, the source of Dahl’s original data, differential access to resources like education reproduced an elite decision-making system (Soloway, 1987). Finally, critics argued, pluralist models focus solely on outcomes of decision-making events, ignoring both the intentions of political actors (Clegg, 1989; Wrong, 1979) and the processes through which elites control the public decision-making agenda (Bacharach & Baratz, 1962, 1963, 1970). For example, pluralist research would view an elite’s offer to form a temporary coalition with a nonelite group as evidence of competitive balance even if the elite’s intention was to co-opt the nonelite group or to undercut its ability to resist domination during subsequent, more important, conflicts. Similarly, pluralist models would not detect the use of successful threats (or more subtle processes) to persuade nonelites to not even raise an issue in public deliberations. Unfortunately, empirical studies of social and political change have not found clear evidence to support either the elitists’ predictions of political stability through elite dominance or the pluralists’ notions of social and political change through processes of constant balanced conflict. Instead, political systems at all levels seem to combine the two processes,

2 It should be noted that Dahl, in an article co-authored with another key advocate of pluralist theory, eventually repudiated his view that the power of interest groups was balanced, creating a broadly representative pluralist system: “Common interpretations that depict the American or any other market-oriented system as a competition among interest groups are seriously in error for their failure to take account of the distinctive privileged position of businessmen in politics” (Dahl & Lindblom, 1976, p. xxxvi). In a subsequent article, Lindblom (1977) argued that, because politicians typically defer to business leaders, “pluralism at most operates only in an imprisoned zone of policymaking” (p. 175; also see Lindblom, 1982). For extended applications of pluralist theory to healthcare policy, see Alford (1975) and Alford and Freidland (1985).

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experiencing long periods of quiescence occasionally broken by periods of significant change (Baumgartner & Jones, 1993). TOWARD PUNCTUATED EQUILIBRIA MODELS OF PUBLIC POLICYMAKING

By the late 1970s researchers were attempting to transcend the community power debate in two ways. First, social theorists interested in power relationships created a number of multilevel models that attempted to simultaneously capture the dynamics of overt policymaking activities and more covert power dynamics (Clegg, 1989; Giddens, 1984; Lukes, 1974). Second, political theorists responded by looking more closely at the processes through which issues are placed on the public agenda and how those issues are managed once there. Both efforts were stimulated by a rediscovery of E. E. Schattschneider’s concept of the “mobilization of bias,” and both led to the development of models of policy choice that focused on the “nonrational” nature of public policymaking. Mobilizing Bias

Schattschneider (1960) started by rejecting claims that the United States “faced a crisis in democracy.” The relatively new science of political polling had found that a majority of U.S. citizens knew very little about many of the issues that were “hot items” for politicians and political scientists. Similarly, voting data made it clear that political participation was low and declining. Schattschneider rather bluntly responded that the former critique conflated what professional politicians and political science professors thought was important with what the general populace knew was relevant to their daily lives: “It is an outrage to attribute the failures of American democracy to the ignorance and stupidity of the masses. The most disastrous shortcomings of the system have been those of the intellectuals whose concepts of democracy have been amazingly rigid and uninventive” (p. 132). People do not participate in politics simply because the issues that reach the agenda do not reflect their concerns and because the available options do not provide them with meaningful choices. In theory, elections can serve as an important means of constraining political elites and forcing them to defend their actions in public terms. But if elections do not provide voters with meaningful alternatives, voters realize that participation is a sham (Stone, 1987, pp. 243–45). Consequently, Schattschneider argued, the key issues facing democratic theorists are “what questions [the political system] refers to the public for decision or guidance, how it refers them to the public, how the alternatives are defined and how it respects the limitations of the public” (p. 137). Schattschneider’s response to these issues was the concept of mobilizing bias: “All forms of political organization have a bias in favour of the exploitation of some kinds of conflict and the suppression of others because organization is the mobilization of bias. Some issues are organized into politics while others are organized out” (1960, p. 71). Pro-business and upper-class groups are more tightly organized than groups representing other interests, have more money and prestige, are better able to exploit the structures of legislative bodies, often obtain and use private information provided by politicians, and exaggerate their political power without challenge by legislators (Schattschneider, 1935). When their interests are threatened, elite groups are able to quickly mobilize these resources to control the decision-making agenda and to create interpretive frames that favor their positions on policy issues. Of course, it also is possible for nonelites to mobilize public

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pressure on decision makers, but the fragmentation of nonelite groups and the federalist structure of the U.S. political system makes it much more difficult for them to do so.3 James Q. Wilson (1973) extended Schattschneider’s mobilization concept in a model that focuses on the extent to which the effects of a policy proposal are concentrated or diffused. Effects (“benefits” or “costs” in Wilson’s model) are concentrated if they are spread over a small number of people and/or if they touch a significant part of a person’s life or resources. Diffusion of effects inhibits organization of bias; concentration facilitates it. For example, price controls on prescription drugs initially have concentrated costs (on drug companies and their employees) and diffused benefits (for patients). Consequently, it is much easier to mobilize pressure on policymakers to oppose price controls than it is to mobilize pressure to enact them. Four types of policy conflicts are possible. In two types—when both sides are diffused or both sides are concentrated—neither side is strong enough to dominate the other. Key issues are not likely to become part of the policy agenda, and if they do, policymaking is likely to result in stalemate or in alternating victories for the two sides. The other two configurations yield unequal contests: concentrated interests almost always win against diffused ones. In the case of concentrated benefits versus diffused costs (e.g., restrictions on the right to sue providers, insurance companies, or HMOs), the group that stands to gain will mobilize whereas the larger group whose members stand to lose will remain passive and unorganized (at least in the short term). In the case of diffused benefits versus concentrated costs (e.g., laws facilitating lawsuits against providers, insurance companies, or HMOs), an organized opposition to the costs will easily defeat potential gainers. Unfortunately, Wilson’s model is limited to tangible gains and losses and excludes the emotional and relational dimensions of political experience. As Stone (1988) suggested, gains and losses will be perceived as “significant” only if they can be linked to actors’ values and frames of reference. Many health policy issues are difficult to manage precisely because different groups approach them with different degrees of emotional intensity. For example, using stem cells from aborted fetuses generates highly emotional responses from some interest groups. Supporters (researchers and potential beneficiaries of their research) tend to be “diffused” in many senses of the term. They do not seem to be as emotionally involved in the issue as the opponents, in part because their concerns are based on a possibility of successful research located in an undefined future. Researchers are dispersed, both geographically and in terms of academic discipline, and advocacy groups for different diseases have no natural connections outside of the fetal tissue issue. In contrast, opponents are incensed by concrete uses of fetal tissue in the present; and they are tightly organized through a variety of interlocked conservative political and religious groups (Klatch, 1987). As a result, opponents of stem cell research are both more likely to prevail in private deliberations within government bureaucracies, especially when bureaucrats and elected officials share their ideological bent. They also are better positioned to introduce the issue into public venues at propitious moments, are better equipped to define the debate in preferred terms, and thus are more likely to prevail in public policymaking. Mobilization also depends on advocates’ rhetorical skills—on their ability to define a particular proposal as beneficial to a sufficiently large group of people to gain policymakers’ attention and respect and to energize that coalition. When successful, leaders can 3

Schattschneider (1960) had a great deal of faith in the ability of political parties (appropriately reformed) to counter the power of elites. He did not anticipate the extent to which elites would come to control political parties. For an analysis of variations in the power of business elites over time, see Vogel (1989); for a similar treatment of business elites’ influence over health policy, see Imershein, Rond, and Mathis (1992).

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mobilize nonelites sufficiently to overcome elite opposition and in the process produce significant social and political upheaval, both on particular issues and sometimes across multiple issues. But to do so they must overcome the structural and rhetorical advantages of elite groups. In sum, elite models explain stability well, pluralist models can explain change, but neither can explain both. The mystery is how the dual process of mobilization actually occurs. Contemporary models attempt to solve the mystery by significantly relaxing the rationalistic assumptions of traditional perspectives and by recognizing that there are multiple processes through which policy is developed. Policymaking and Garbage Cans

Governments are organized anarchies, to borrow Michael Cohen, James March, and Herbert Simon’s depiction of some kinds of organizations (1972).4 Public policymaking is characterized by ambiguous preferences, limited understanding of decision processes, and fluid participation. Political actors often fail (or refuse) to make their intentions and goals clear. Creating and maintaining ambiguity about one’s definition of a public problem does have a number of strategic advantages: It allows political actors to synchronize diverse motivations, expectations, and values (Cobb & Elder, 1983; Lindblom, 1959); mobilize support from different interest groups; and unite people who agree on the same policy but for different reasons (Stone, 1988, esp. chap. 6). In addition, strategic ambiguity allows political actors to carve out the time needed for private maneuvering and to placate all sides in a controversy by allowing them all to claim victory (Edelman, 1964; Eisenberg, 1984; Morone, 1994). Ambiguity also allows actors to reconcile their own ambivalence and to develop effective rationalizations for supporting particular policies (Converse, 1964). But strategic ambiguity also means that public policymaking is more a loose collection of ideas competing for attention than a coherent decision structure. In the resulting ad hocracies, decision makers discover their preferences through acting more than they act on pre-existing preferences (Cohen, March, & Olson, 1972; March & Simon, 1970; Weick, 1995). Policymaking deviates substantially from rational models of choice (Stone, 1988). Nonrational policy making also is encouraged by the differentiation and specialization that are inherent in bureaucratic structures. Although political actors may know their own specialties very well, they often do not fully understand either the overall policymaking process or how their actions contribute to that process. They operate by trial and error, learn partial lessons from experience, and manage crises haphazardly. Political actors drift in and out of the decision process, depending on the intensity of their interest in a given topic and the relevance of their pet proposals. Systems (political and organizational) are “a collection of choices looking for problems, issues and feelings looking for decision situations in which they might be aired, solutions looking for issues to which they might be the answer, and decision makers looking for work” (Cohen, March, & Olson, 1972, p. 2). When political actors do decide to become involved in a decision process, they use it like a “garbage can,” dumping into the discussion a plethora of concerns, only some of which are logically related to the problem at hand. Of course, some issues are dropped into 4

For a summary of models of decision making that focus on nonrationalities, see Conrad and Poole (2002). Masuch and Lapotin (1989) have persuasively argued that the garbage can model is applicable only to a small range of organizations. But policy scholars argue that the range includes policymaking bodies and government agencies.

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the can more often than others, and some proposals are scrutinized more throughly and with greater precision. Through a variety of strategies, elites can push an issue through the process rapidly or can slow or halt the process altogether (Butler et al., 1980; Kingdon, 1995; Westerlund & Sjostrand, 1979). Nonrational garbage can processes seem to be applicable at every stage of policymaking (Baumgartner & Jones, 1993). Before an issue is addressed through public policymaking, long-standing conditions must be defined as “problems” of sufficient importance to be placed on the policy agenda. As we explain in the following section, this redefinition can come from inside or outside of normal policy institutions. Highly public crises (e.g., epidemics), political campaigns (e.g., Harris Wofford’s surprising victory in the 1991 U.S. Senate race in Pennsylvania, in which health policy reform was the central issue), or seemingly unrelated events (e.g., the healthcare needs of Spanish American War Veterans, which led to Theodore Roosevelt’s advocacy of national health insurance) may suddenly elevate an issue or a proposal to the agenda. Alternatively, institutional actors may labor over a particular issue or “solution” for years before they find ways to successfully manipulate political “openings” and elevate it to the policy agenda. Thus, an issue’s appearance on the agenda usually results more from idiosyncratic political processes than from a careful assessment of the nation’s policy needs. Once “problems” are created and defined, they must be attached to potential solutions. In some cases this process is rational—problems are defined and analyzed, and policies are developed to deal with their causes. But in other cases the process is reversed (Baumgartner & Jones, 1993; Stone, 1988). For example, during the 1960s, when it was politically viable to advocate expanding social service programs, advocates of HMOs touted them as a means of increasing access to care by the poor. Later, when the Nixon administration focused on cost containment, HMO advocates argued that healthcare cost increases were driven by the fee-for-service payment system and could be controlled by increased reliance on managed care. Still later, when the public health community sought to focus on preventive care, HMOs were touted as a solution to that problem as well (Stone, 1988). Finally, after proposals are enacted, they must be implemented. The implementation process takes place in private, in often lengthy and fractious negotiations among institutional actors. The contested character of these negotiations is an open invitation for garbage-can processes to occur. For people steeped in the Western “grand narrative” of progress through rational action, nonrational garbage can processes seem to be somewhat bizarre. But when decision making is nonrational, the importance of discourse and rhetoric to public policy formation is magnified. In rational models, communication is impoverished—limited to the definition of problems and the collection, interpretation, and application of information. Of course, even these information-processing processes are infused with symbolic action, regardless of how narrowly they might be defined (Shelton, 2000; Stone, 1988, esp. chaps. 7 & 13). Numbers and facts are metaphors for and symbols of underlying value sets, definitions of democracy, and presumptions about the proper role of the state in economic decisions. In political action, numbers and facts are made, not discovered. The more nonrational a decision process is, the more central is discourse to its function and outcomes. Goals, core values, actors, interests, and issues all are contested terrain, and policymaking depends on the capacity of various spokespersons to create plausible narratives about health and the healthcare marketplace. Healthcare policy is a web of dilemmas and paradoxes, enigmas that are constructed, revised, and reconstructed through symbolic processes (Conrad & Millay, 2001). Political structures, economic systems,

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and social ideologies create the “space” within which discourse functions. When the structures are fluid, the systems are chaotic, and the ideologies are replete with tensions and contradictions, then the space is enlarged, and the importance of discourse is magnified. Interests, Institutions, and Stability

Research on the actual processes used in policymaking suggests that policies are made through two processes, incrementalism and mobilization. The former is nonconscious, and many of its outcomes are unintended; the latter is conscious and strategic. The former fosters long-term policy stability; the latter leads to bursts of significant change. Because it is so difficult to accurately predict the outcomes of implementing a particular policy option, especially over the long term, decision makers develop a preference for making limited, reversible changes (Hayes, 1992; Lindblom, 1959). Once policies are developed, they eventually are institutionalized, and members of the relevant institutions have a vested interest in maintaining the status quo. Indeed, every group has an interest in establishing a monopoly on public understandings of a policy area and creating institutional arrangements that perpetuate that monopoly (Kingdon, 1984; Redford, 1969).5 For example, for decades a cozy triangle composed of the Department of Agriculture, farm interests, and cigarette companies controlled federal tobacco policy. Consumer groups, healthcare interests, and the FDA were, in comparison, unorganized and powerless to challenge the iron triangle’s stranglehold on policy (Kingdon, 1995). Policy monopolies are sustained through the cultivation of images of expertise, the structure of public policymaking, and the articulation of a supporting ideology. Claiming distinctive expertise is easiest for topics with high levels of technical complexity (e.g., genetic engineering). But any interest group can solidify its position by claiming that its interest area is technically complex. For example, the medicalization of psychiatric conditions allowed physicians to claim a unique kind of expertise that restricts outsiders’ and influence over related policies (Conrad & Schneider, 1980; Foucault, 1981). “Outsiders” who dare question the judgment of the professional experts can expect to experience their hostility, indignation, and resentment (Baumgartner & Jones, 1993). The views of policy experts are particularly difficult to challenge when they seem to be based on objective measurements, rules, and procedures. As a result, one of the most important activities of policy monopolists is to legitimize their control by creating seemingly neutral and objective procedures, rules, and regulations—DSM IV diagnostic codes, legal restrictions on the right to engage in psychotherapeutic activities, requirements for physician oversight of nonphysician therapists, mechanisms for controlling or influencing the approval of new psychotropic generic drugs or treatment regimes, and so on. Of course, creating supportive structures rarely occurs without conflict. Institutionalized rules inevitably have important policy consequences, which is why seemingly arcane decisions like changes in FDA regulations often become the focus of intense debate (Kriebel, 1991). Riker (1980) noted, “Institutions are no more than rules and rules are themselves the product of social decisions. . . . One can expect that losers on a series of decisions made under a particular set of rules will attempt (often successfully) to change institutions” (pp. 444–445). Institutional rules do change, slowly and incrementally, adding stability to the policymaking process. 5

Political scientists have studied policy monopolies in a variety of settings and have used a number of different terms to describe them—iron triangles, policy whirlpools, and subsystem politics are the most common. The classic study of healthcare policymaking triangles is Starr (1982).

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Stability also is created by the structural configurations in which public policymaking takes place. In normal times, a rough equilibrium exists on any particular issue because the complex web of interest group pressures balance one another (Grossman & Helpman, 2001). Advocates adapt to these realities and focus their efforts on quietly influencing administrative decisions while waiting for opportunities to mobilize other stakeholders. They keep their favored issues alive by creating a kind of “steady-state noise,” issuing white papers, publicizing recent studies of the situation, testifying before legislative bodies, and/or participating in media events. Policy articles in the New England Journal of Medicine or the Journal of the American Medical Association, talk show appearances by representatives of the AMA or FamiliesUSA, and reports by U.N. health-related agencies all keep healthcare policy matters in the public memory if not on the public policymaking agenda. During times of quiescence, the “hidden clusters” of institutional policymakers spend their time assessing conditions, issuing mandated reports, and devising and revising possible “solutions” to those conditions (Kingdon, 1995). As a result of their efforts, policies change slowly and steadily, largely outside of public attention. Public decision systems are disaggregated. One of the effects of this arrangement is the development of policies that are logically inconsistent with one another. For example, the U.S. tobacco industry long has benefited from institutional arrangements that define tobacco as an agricultural product little different from corn or wheat, whereas some federal agencies, in contrast to the Department of Agriculture, treat it as a threat to public health and actively discourage its use. As a result, policies emerge in very nonrational ways, as one institution offsets the activities of other institutions.6 Policy monopolies are sustained by ideologies as well as by images and decision structures. Monopoly control is strongest when it is based on a supporting ideology tightly linked to the dominant values of the society. For example, the specter of “socialized medicine” and all of its ideological baggage is readily available to opponents of virtually any government action that influences healthcare. Ideological commitments to “choice,” “free markets,” “provider-patient relationships,” and so on, make it very difficult for reformers to persuade decision makers to even appear to intervene in existing arrangements (Baumgartner & Jones, 1993; Kingdon, 1995; Riker, 1980, 1982). Political Upheavals and Punctuated Partial Equilibria

Of course, policy monopolies do not permanently control the policymaking process; change does occur. Two metaphors dominate theories of how policy equilibria are upset— streams and windows. Both were popularized by John Kingdon (1995), who suggested that during policy equilibria three processes operate—the identification and definition of social conditions as problems, the development and presentation of policies (that is, proposed solutions), and the vagaries of politics. Normally, the three streams are independent of one another. However, moments arise when the three streams come together, suddenly transforming issues that long had been the province of the hidden clusters of researchers, career bureaucrats, and lower-level political appointees into items on the public decision agenda (pp. 87, 145). Policy windows open and a “visible cluster” of high-level elected officials who receive a great deal of press and public attention suddenly deem the issue worthy of their attention (pp. 68–69). Some windows remain open long enough for major 6

Equilibrium also means that legislative bodies tend to process topics in a serial fashion, examining an issue only when it becomes visible, important, and controversial and moving on to other issues when the public furor over that issue subsides (McCubbins & Schwartz, 1984; Redford, 1969; Simon, 1983).

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policy changes to be made; others close so quickly that little substantive action is taken. But, as Stone (1988) concluded, “Controlling the number and kinds of alternatives considered is the essence of the political game. Keeping things off the agenda is a form of power as important as getting them on” (p. 196). How and Why Policy Windows Open. Policy windows open when powerful publics are mobilized to act. Mobilization occurs when (a) conditions reach a critical mass or a crisis demands attention of the visible cluster and/or (b) a situation is successfully exploited by the hidden cluster of professional policymakers. Crises become crises only when they are perceived as such. Social conditions may exist for long periods of time without being defined in the public mind as problems that require action (Wildavsky, 1979). Highly visible events may trigger perceptions that a crisis exists. Or the transformation may occur when routine indicators of social conditions reveal changes that are perceived as significant. Whatever the triggering event might be, it leads to action only if advocates successfully use the available “evidence” to capture the attention of the media and policymakers (Cobb & Elder, 1991; Downs, 1972; Nelson, 1984; Walker, 1991). But crises, disasters, and other media events by themselves rarely open a policy window. The conditions that are accentuated by a triggering event must already exist, they must be salient to the public and to policymakers, they must be politically relevant, and attention to them must be sustained. For conditions to become “problems” (much less “crises”), they must be linked to core values of the public and the interests of decision makers. Sometimes advocates fail to make the former link. For example, some interest groups view access to healthcare by the poor as a right and favor a number of policies that correspond to this ideological position (Reagan, 1999). Others view healthcare as a commodity to be purchased like any other. Since most citizens have some access to healthcare—especially the politically powerful middle- and upper-class voters and seniors— they have little reason to define healthcare as a right. Add to this the pervasive bias among those groups against “welfare,” especially for “undeserving” citizens, and it is no surprise that advocates of increased healthcare access find it very hard to forge the necessary links to public values.7 Creating these links is especially difficult since opponents can readily connect virtually any proposal for increasing access to negative values like “government intervention,” “socialized medicine,” or “cost increases.” Since decision makers have little pragmatic political interest in meeting the healthcare needs of the poor (or any other group with limited clout), the issue rarely stays on the public agenda long enough for corrective policies to be implemented (Kingdon, 1995, p. 111). At other times, advocates successfully appeal to the public’s values but fail to satisfy the interests of decision makers. For example, restraining the cost of government programs is a highly visible issue for the public. But in many cases government spending benefits powerful political constituencies. One of the policymakers that John Kingdon (1995) interviewed provided a pithy summary: “Economists somehow think that waste is a politically potent issue. But they get to the Hill and discover that Congressmen favor waste. . . . For a politician, the costs are the benefits” (p. 137). Policy windows also may open from the inside, when members of the hidden cluster detect a sudden increase in a particular social ill and find ways to link those conditions 7

For example, AARP strongly supported the Clinton healthcare plan until it received a deluge of complaints from its members in Florida and Arizona that the plan would spend taxpayer dollars to provide healthcare for illegal immigrants.

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to powerful symbols or important public values (Aberbach, Putnam, & Backman, 1984; Cobb & Elder, 1983; Cobb & Ross, 1997; Cohen, 1981; Edelman, 1967; Rochefort & Cobb, 1992, 1994; Stone, 1988, esp. chap. 7). For example, during the 1980s, professional policymakers published studies showing that healthcare costs were increasing rapidly and by doing so moved cost containment to the top of the public policy agenda, just as the publication of data revealing rising hospital costs put that issue on the agenda during the mid-1970s. Proposals that the hidden cluster long had been developing suddenly became sellable—programs to control costs (e.g., utilization reviews of Medicare costs, DRGs for hospitals, and HMOs) or programs that cost very little (e.g., immunizations for children).8 When these policy windows open, entrepreneurs are able to exploit a critical mass of sentiment: “Advocates lie in wait in and around government with their solutions at hand, waiting for . . . a development in the political stream that they can use to their advantage” (Kingdon, 1995, p. 165). As long as an entrepreneur is well connected, understands the power of symbolism, and has strong negotiating skills, he or she may be able to raise an issue to the top of the political agenda. Entrepreneurs often are legislators, but they also may come from the ranks of political appointees. Paul Ellwood energetically sold HMOs to the Nixon administration as an appropriate Republican response to healthcare cost increases (Bauman, 1976; Brown, 1983; Falkson, 1980; Marmor, 2000). Later, Hale Champion, undersecretary of Health, Education, and Welfare in the Carter administration, moved HMOs to the top of his administration’s agenda (Kingdon, 1995). Of course, there is no guarantee that these open windows will result in successful policies. For example, in 1979 “insider” pressures led Congress to enact catastrophic health insurance in spite of overwhelming evidence that it was exactly the wrong plan because it would encourage providers to deemphasize primary care and use the highest cost treatments available (Kingdon, 1995, p. 57). Similarly, external pressures to contain costs led to the adoption of DRGs, which encouraged hospitals to diagnose patient conditions in ways that placed the patients in more severe categories or, worse yet, discharge ill patients as soon as they use up their allotted reimbursement (Moon, 1996; Stone, 1988). In contrast, political processes may keep the best proposals from even being considered regardless of how they arrive on the policy agenda. How and Why Windows Close. Sometimes policy windows close because the coalition that forced the issue onto the agenda is not stable enough to sustain pressure on decision makers.9 In other cases the precipitating event that vaulted the issue into the forefront is not followed up by similar events or discourse that keeps the issue alive. The public has a limited attention span; the media’s is even shorter (Downs, 1972; Kingdon, 1995). In addition, the public and the media tend to focus on an issue late in the decision process, when it is most newsworthy or dramatic but after the deliberations have largely run their course (Jones & Strahan, 1985; Rankin, Neely, & Melber, 1984; Simon, 1977, 1985; Walker, 1991). However, the most important factors that cause policy windows to

8 Ironically, these “indicators” may lead policymakers to act to “solve” problems that already are in decline. Broad scale indicators showed that the severity of the U.S. drug problem declined throughout the 1980s, leading Baumgartner and Jones to note that “While President Bush [I] made his war on drugs a high priority and convinced a majority of Americans that it was the most serious problem facing the nation, virtually every indicator of drug abuse showed that the severity of the problem was declining” (1993: 158). Similarly politicians made violent crime a major issue long after crime rates started to plummet. 9 Kingdon (1995, p. 169) argued that this is not relevant to the coalition of groups interested in healthcare. Opposition comes from outside of that coalition, not inside of it.

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close seem to be the blocking strategies of interest group organizations (Cobb & Ross, 1997), the lack of viable solutions to the problem, or, conversely, the resolution of the problem. Interest groups play two primary roles in policymaking. On the one hand, they are part of the hidden cluster that exploits opportune political moments (Olson, 1965). The federal program supporting kidney dialysis emerged from just this kind of interest group advocacy. Enacted with little analysis of its potential costs, the program became very expensive but has never been seriously challenged (Marmor, 2000). The cadre of conservatives who tout medical savings accounts as a solution to virtually any healthcare problem form another such group; liberals who repeatedly advocate national health insurance form still another (Kingdon, 1995). However, the most important function of interest groups is to block proposals from being enacted. Although interest groups always would like to see certain policy changes enacted, they typically prefer to maintain the status quo. During periods of policy quiescence, they learn how to benefit from exiting structures while fostering favorable incremental changes. Virtually any new policy threatens some valued prerogatives and thus will face intense opposition (Kingdon, 1995). Interest groups have a number of blocking strategies readily available. One is to manipulate the structure of government policymaking—to foster and/or encourage turf battles among various committees, between the houses of Congress, between the executive and legislative branches, and/or between the federal and state governments. If an issue has a great deal of popular support, interest groups face a significant challenge. But if the public is apathetic, confused, or ambivalent (or can be made to feel apathetic, confused, or ambivalent), turf battles are easier to facilitate. For example, the popularity of national health insurance in 1979 overwhelmed a long-standing turf battle between Senators Kennedy and Long, allowing the Carter administration’s proposals to move along more rapidly than they otherwise would have (Kingdon, 1995, pp. 157–158). Conversely, growing confusion over the Clinton health plan, stimulated by public appeals by interest groups, doomed it to fail. As well as influencing the definition of conditions as “problems,” interest groups also may be able to define “solutions” in negative ways. If two groups can publicize contradictory proposals, they may well be able to close the policy window altogether. At worst, they can delay final action until popular excitement over the topic wanes (Baumgartner & Jones, 1993, p. xiv). Another negative strategy is to undermine or split the coalition advocating change. Through the mid-1970s, the strongest advocates of national health insurance insisted on a comprehensive, universal program. With the election of a Democratic Congress and a supportive administration, the late 1970s seemed to be a historically opportune moment for the enactment of some type of program. But opponents were able to magnify splits within the Carter administration and exploit tensions between the administration and the congressional leadership over the scope of coverage. Their tactics delayed the presentation of the administration’s proposal and created openings that other opposition groups were able to exploit successfully (Light, 1982). By the time a proposal reached Congress, public pressure for the measure had eroded, and questions raised about the viability of any financing mechanism allowed interest groups to defeat the proposal. Interest groups also can go directly to the public, and increasingly did so during the 1990s. The Coalition for Healthcare Choices’ famous “Harry and Louise” television ads successfully preyed on public fear of “big government” to define the Clinton plan as excessively complex, expensive, and intrusive (Aaron, 1996; Hacker, 1996; Skocpol, 1996). Of course, the larger, more sweeping, and more complex a proposal is, the more vulnerable it

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is to attack. And because large, sweeping bills are most likely to upset the political system that supports interest groups’ prerogatives, defeating them is in the interest groups’ best interests.10 Policy windows also close because some problems simply do not have politically viable solutions. Long-term care may be such a problem. The need is clear (and increasing as the baby boomers age), and the political stream is in place as a result of the power of the “gray lobby.” But no policies have been developed that would simultaneously control costs and ensure adequate access or that would deal effectively with the logistical problems involved in matching patients to the appropriate facilities or types of care (Kingdon, 1995, p. 178). In fact, for reasons that we explain later, finding solutions to health-related policy issues may be inherently problematic (Navarro, 1994; Peterson, 1998). Proposals of limited scope may be financially viable but are unlikely to have sufficiently widespread effects to garner significant public support. Conversely, comprehensive proposals are vulnerable to blocking strategies by concentrated interest groups and to the vagaries of public attention, even if favored by a large (but differentiated) group of citizens. The intense desire to act soon gives way to the recognition of the high financial and social costs that are involved (Downs, 1972). Attention to the issue dissolves or is focused on making minor, inexpensive changes (e.g., the enactment of medical savings accounts and health insurance portability after the demise of the Clinton health plan). New healthcare proposals may shock the system for a time, may even generate incremental changes, and may reduce the power of opposing interest groups. But it is more likely that proposals will mobilize opponents and return the system to an equilibrium in which the various interest groups retain their essential power relationships. Finally, windows close because problems are “resolved.” Sometimes, problems are actually solved. Proponents mobilize popular enthusiasm that is sufficiently strong and long-lasting to undermine entrenched political subsystems and substitute new institutional structures (Schattschneider, 1960). For example, although pockets of need still exist— geographic, economic, and disease-specific—childhood immunization rates in the United States have improved markedly during recent decades as the result of successful policy initiatives. In fact, a great deal of progress has been made in children’s health for the simple reason that it is easy to develop public pressure in favor of children’s programs and relatively easy to devise concrete steps to take on their behalf. In addition, it is difficult to mobilize opposition to such programs. As stated by a federal health policymaker, “Kids are cheap. You can do what you have to do with kids in the medical area without spending a lot of money because, basically, kids are well. So, if you’re looking for something to do in health and you don’t want to cost a lot, do kids” (quoted in Kingdon, 1995, p. 108). At other times, problems are so intractable that advocates simply give up in defeat. Failure removes a topic from the policy agenda by exhausting its advocates and persuading policymakers to distance themselves from the issue. Mobilizing advocates to try again is difficult, and persuading politicians to take political risks in favor of what seems to be a 10

Our comments on the range of blocking strategies available to interest groups are not intended to suggest that the groups are omnipotent. The power of the AMA and NHA was reduced with the passage of Medicare and subsequent regulatory programs. And the passage of incremental legislation creates inertia in new directions and may have unintended consequences that undermine or alter dominant interest group coalitions. Patients and providers quickly adapted to Medicare, and the specter of “socialized medicine,” at least for selected populations, became less foreboding (Kingdon, 1995; Marmor, 2000; Moon, 1996). The rapid growth of HMOs during the 1990s magnified tensions between specialists and family physicians within the AMA and further weakened the AMA’s stranglehold on policymaking. At the same time, incremental changes lead to the development of new interest groups and interest group coalitions as well as new strategies for blocking policy initiatives.

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lost cause is virtually impossible (Price, 1978). This is especially true when a proposal meets a highly public demise, like the Clinton Health Security Act. RHETORIC AND HEALTHCARE POLICYMAKING

As if policymaking in general was not sufficiently complex and convoluted, healthcare policymaking is bedeviled by its own complications. One complication stems from a fundamental debate over societal definitions of what healthcare is, a right or a commodity; another is grounded in the multiple, incongruent goals that characterize healthcare policymaking (Marmor, 1994; Reagan, 1999; Stone, 1988). Healthcare: Commodity or Right?

The dominant ideology articulated in contemporary healthcare policymaking treats healthcare as a commodity and assumes that the optimal system for delivering it is the “free market.” Indeed, in the U.S. body politic, the one premise that is beyond critique is the inherent superiority of capitalist systems (Stone, 1988; Weiss, 1997). As we have suggested throughout this chapter, a number of factors have influenced U.S. healthcare policy, from the fragmented structure of the U.S. government (Grogan, 1994; Kronenfeld, 1997) to the changing interests of key economic actors (Marmor, 1994). But the ideology of “free market romanticism” has long played a central role.11 Michael Reagan (1999) concluded that “to understand the nature of American healthcare . . . requires that we take a side trip into the basic language of . . . laissez-faire ideology” (pp. 3–4; also see Blank, 1988; Marmor & Hamburger, 1994; Kronenfeld, 1997; Marmor, 2000; Starr, 1982, 1994). Laissez-faire capitalism is based on the assumption that a free-market economic system includes sufficient checks and balances to ensure that the legitimate interests of all members of the society will be met. Government should have only a very limited role in the economy. It sometimes may need to ensure that economic markets remain competitive (e.g., through anti-monopoly laws) or that property rights are protected (Reagan, 1999), but with these few exceptions government is best when it does the least. This view of government’s role in the economy is grounded in three assumptions. First, what might be called the futility thesis holds that any government is incapable of effectively directing a society or economy. The presumed miracle of the free market is that its processes work “invisibly.” It does not have to be understood and cannot consciously be managed. When a government acts, it inevitably bases its policies on an incomplete understanding of social and economic processes and is often biased by nonmarket values. In very rare instances, the government may actually do what the market needs to have done at a particular moment, but these instances are purely accidental. Second, government activities inevitably produce serious, perverse, unintended, and unanticipated consequences (the perversity thesis). Third, as a result, whenever the government acts, it is likely to jeopardize the virtues of the capitalist system and the economic gains that have been achieved through the free market (the jeopardy thesis) (Aune, 2001; Hirschman, 1991).12 11 The term is borrowed from Morone and Goggin (1995). George Soros (1998, 2000) uses the more pejorative term “market fundamentalist,” but both phrases are intended to suggest that free marketeers’ commitments to the ideology are both absolute and grounded in faith more than science. We prefer the milder term because it better represents the orientation of the key actors in the case that we will analyze. 12 Professional economists’ adherence to laissez-faire theory waxed and waned throughout the 20th century (Irwin, 1996). But its availability as a rhetorical resource, as well as its use by conservative politicians, was constant.

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When applied to healthcare, free market romanticism assumes that increased reliance on market competition will result in a more efficient allocation of resources and a higher level of distributive justice than any form of government involvement (Conrad & Millay, 2001; Patel & Rushefsky, 1995, p. 11). It appeals to the traditional individualism of U.S. society (Beauchamp, 1996, pp. 81–111; Daniels, Light, & Kaplan, 1996: chap. 2; Weiss, 1997) and deeply held suspicions about government interference in the economic system (Patel & Rushefsky, 1995; Skocpol, 1994). It matters little that the basic notion of a “market” in healthcare is ill defined or that the “corrective mechanisms” of that market are only vaguely understood.13 Nor is it important that a great deal of empirical evidence demonstrates that free market theories do not apply to this sector of the economy (Blank, 1988; Conrad & Millay, 2001; Kingdon, 1995; Kleinke, 1998; Marmor, 1990, 1994; Roemer, 1994; Rosenthal, 1980; Weiss, 1997). Increasing the supply of healthcare services often does nothing to reduce their costs. Healthcare consumers lack the information, expertise, and mobility that is required for them to make economically rational choices (Blank, 1988; Enthoven, 1979; Roseneau, 1994). The healthcare market neither controls nor eliminates “externalities” wherein the decisions of one consumer influence the choices available to other consumers. But the empirical realities of the healthcare marketplace are of secondary importance. What does matter is the widespread acceptance of at least some of the elements of free market romanticism—the “reflexive piety of Americans before our idols of ‘the marketplace’ and ‘free choice’” (Marmor, 1994, p. 149). However, the alternative, treating health or healthcare as a right, also is problematic (Bracci, 2001; Reagan, 1999). It requires policymakers to either stipulate limits or to advocate universal coverage and virtually unlimited care, both of which have proven to not be politically viable. Determining which providers, industries, and sectors of the health economy (e.g., mental health, chiropractic care, generic drugs) public policy should encourage and which it should limit is both ethically problematic and guaranteed to stimulate the strongest possible opposition from interest groups. Attempting to develop policies that define some categories of patients as deserving government assistance and/or some providers or procedures as warranting government control has been more acceptable but still raises serious ethical questions, particularly among those who advocate treating healthcare as a right. It makes little economic sense to prohibit poor women from receiving contraceptives or abortions or to encourage government financing of care for high-expense groups (e.g., the elderly) while allowing large numbers of children or working parents to be uninsured. However, once healthcare is treated as a right, then a plethora of social values become relevant to policymaking, and rhetorical processes quickly begin to dominate economic considerations (Banks, 1989–90; Bayer, 1995; Scott, 2001; Treichler, 1988). The Healthcare “Trilemma”

The second complication inherent in healthcare policymaking involves goals. Americans long have agreed that they want unlimited access to high-quality healthcare (at least for themselves) and at low cost. The problem is that it may not be possible to achieve these three goals simultaneously (Marmor, 1994; Reagan, 1999). Historically, proposals for government action have sought to address one of the trilemma issues (cost, access, or quality) at a time and in doing so, sacrifice the other two. Consequently, opponents can always argue that the effort is futile. In addition, it is easy to marshal arguments that the 13

The first eight chapters of Healthy Markets (Peterson, 1998) deal with this issue.

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proposal will have perverse effects on the other criteria and will jeopardize the capacity of the U.S. system to meet the other goals (Reagan, 1999; Roemer, 1994). Attempting to deal with this trilemma is complicated further by the activities of powerful interest groups with conflicting preferences and agendas. As a result, policymaking is piecemeal, oscillating from one goal to another (Marmor, 2000). Since the public policymaking process in general also encourages fragmented policies, the health trilemma has led to what even the staunchest defenders of “the world’s best medical care system” admit is a uniquely complex, convoluted, and problematic mosaic of policies and systems (Aaron, 1996; Kleinke, 1998; Leyerle, 1994). Conversely, if a government proposal attempts to address all three issues simultaneously, as the Clinton plan did, it raises the specter of “socialized medicine” and “runaway government bureaucracies” (Shelton, 2000; Skocpol, 1996). The sheer complexity of a comprehensive proposal, combined with inevitable tensions and contradictions among its components, make it easy to assert its futility, perversity, and potential jeopardy, a message that is especially powerful for an audience that values individual choice and is deeply suspicious of government intervention in the free market (Patel & Rushefsky, 1985). The adverse effects of past partial reforms of the U.S. system (e.g., the unanticipated consequences of Medicare DRGs, which even proponents of national health insurance admit have been self-defeating or dangerous) can be used to apply the futility thesis to new proposals (Weiss, 1997). Thus, the combination of the trilemma inherent in health policy and the ideology of the healthcare free market allows the development of a dominant romantic narrative and creates an almost insurmountable rhetorical problem for advocates of reform. Only at very special moments do policy windows open sufficiently to allow change to occur, and those windows rarely stay open long enough for systematic policies to emerge. HEALTHCARE POLICYMAKING IN ACTION: THE LONG AND WINDING ROAD TO MEDICARE

In many ways, the enactment of Medicare provides a paradigm of the policymaking processes that we have described in this chapter.14 As a prominent proponent of Medicare during the 1960s told Kingdon (1995), it was hardly the result of rational processes: It was a crazy way to go about it, from a rational point of view. Here we took the one group in the population, the elderly, that was the most expensive, needed the most healthcare, for whom medical care would do the least amount of good, for whom there was the least payoff from a societal point of view. But we did it because that’s politically what we could run with at the time. (p. 167)

In most of the industrialized world, national health insurance moved in the opposite direction, beginning with poor adults, then expanding to their dependents, and then moving up the income ladder. But in the United States, policy windows open first for groups who are perceived to be both needy and “deserving”—children and the aged (Marmor, 2000). Health coverage for the aged was first seriously considered during the waning years of the Eisenhower administration. The hidden cluster of institutional actors had continued to 14 Of course, space limitations preclude our providing an extensive summary. For more detailed analyses, see the three works that have served as the primary sources for this section: Feder, 1977; Marmor, 2000; Moon, 1996.

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quietly advocate for change since the defeat of the Truman administration’s national health insurance proposals. In 1956, advocates were successful in adding disability insurance to the Social Security program, but they made little headway afterwards. In some ways, little had changed since Theodore Roosevelt’s consideration of national health insurance. During the almost 100 years of debate over healthcare in the United States, neither the actors nor the arguments have changed. Regardless of the specific proposal being considered, support typically comes from labor, nurses, social workers, lobbyists for the public health community, and groups that will benefit directly from the proposal; opposition comes from the insurance industry, medical lobbyists (primarily the AMA and the American Hospital Association), business lobbyists, and various conservative or libertarian groups. Proponents appeal to the topoi of citizen rights, social responsibility, and compassion; opponents tout the virtues of the free market, raise the specter of socialism, exalt the sanctity of the provider-patient relationship, and decry constraints on patient choice (Lowi, 1964). Marmor (2000) concluded that, from the Truman administration on, policymakers have found that “the federal government’s role in the financing of personal health services is one of the small class of public issues that can be counted on to activate deep, emotional, and bitter cleavages between what public commentators call liberal and conservative pressure groups” (p. 17). Advocates during the Eisenhower years had anticipated these complaints and revised their proposal accordingly. They carefully linked their “Medicare” proposal to Social Security and suggested that it be funded through a regressive tax system in order to define it as an earned benefit, not a “welfare” program. They excluded coverage for physicians, as the AMA demanded, instead focusing on hospitalization. They also provided the states with a great deal of discretion in determining benefits and administering the program. In spite of their moderation, the opposition to their proposal was predictable, hostile, and successful. In 1960, John F. Kennedy, with strong labor support, made a program of compulsory health insurance for aged Social Security beneficiaries a major campaign theme. But even Kennedy recognized the political minefield that his proposal would have to traverse: “The program . . . is not socialized medicine . . . [but] is a program of prepayment for healthcare costs with absolute freedom of choice guaranteed. Every person will be able to choose his own doctor and hospital” (interview with the New York Times, February 10, 1961, cited in Marmor, 2000, p. 31). Public opinion seemed to be with him: Two thirds of the people interviewed in a Gallup poll favored increasing the Social Security tax to pay for old-age medical insurance (New York Herald Tribune, June 9, 1961). But Medicare illustrates how unstable public opinion is when health policy issues are involved: Once opposition groups begin to attack individual programs, support plummets (Key, 1961). Kennedy, aware that his opponents in Congress felt politically secure and that a protracted fight over Medicare would threaten the rest of his agenda, quickly relegated the bill to a lower priority. Eventually he decided to accept defeat on the bill in 1961 but to use Congressional hearings to garner public pressure for a second try later. In the interim, the AMA mobilized its own constituents through “Operation Hometown,” a program that reproduced and distributed anti-Medicare rhetoric in virtually every form imaginable, including a kit for high school debaters, to oppose “‘Fedicare’—a costly concoction of bureaucracy, bad medicine, and an unbalanced budget” (AMA, 1961, p. 1). The opposition was sufficiently successful that the administration decided not to risk a vote on the measure, fearing that too large a defeat would undermine efforts to reintroduce the measure in future sessions. Medicare would have to wait until the Democratic landslide in 1964 momentarily opened a favorable policy window.

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The 1964 elections gave the United States a president committed to a Great Society in which the elderly possessed healthcare insurance as well as a Democratic coalition in Congress that did not have to rely on support from conservative Southerners. As important, it led to changes in congressional rules and structures that made it more difficult for even well-organized opponents to block legislation. Faced with the almost certain passage of some kind of bill, Medicare’s opponents shifted their strategies. The AMA and its Republican allies advocated limiting the scope of Medicare’s coverage to poor seniors, hoping to reduce support for the measure among politically powerful middle- and upperclass citizens (Moon, 1996). In response, proponents opposed any kind of means test in order to broaden support for the bill. Opponents also wanted to increase the range of services covered by the program, including medical care provided by physicians (a reversal of their position during the previous debates), and they produced public opinion polls showing popular support for that step. Their goal was to add so many debatable provisions that the process would become stalemated until popular support waned. Almost every interest group with a stake in the bill embarked on a media campaign to create public pressure on members of the House Ways and Means Committee. Conspicuously absent from the media war was the elder lobby, which kept a very low profile during the debate over the bill (Moon, 1996). Led by Chairman Wilbur Mills, a long-time opponent of federal health initiatives, the committee negotiated around a complex set of specific issues. Proponents were willing to sacrifice prescription drug and nursing home coverage in order to speed up the process. They also assumed that those provisions could be added incrementally over time (Marmor, 2000, esp. chap. 9). Chairman Mills and other opponents were convinced that Medicare would be so expensive that future expansion would be impossible. As a result, they were willing to compromise in order to “build a fence around Medicare” and forestall the demands for liberalization that they knew eventually would come. Mills’ proposal to divide Medicare into two parts, a hospitalization part funded by mandatory payroll taxes and a voluntary “Part B” covering other forms of care, effectively ended the debate. The sudden support for Medicare from long-term opponents seemed to befuddle the administration. But it reflected the congressional opponents’ reading of the changed climate in Washington and allowed them to emerge from the battle as architects of Medicare instead of just adding their names to the list of its defeated opponents (Marmor, 2000). When the bill reached the Senate floor, an amendment regarding the procedures for billing medical specialists in hospitals that infuriated the AMA passed by a substantial margin in spite of the organization’s strongest opposition, signaling just how much had changed as a result of Johnson’s landslide. The policy monopoly of the “medical-industrial complex” had started to weaken. As soon as the bill passed, a number of provider groups, notably the Association of American Physicians and Surgeons, called on physicians to boycott Medicare. No noticeable boycott ensued, and within a year 17.6 million seniors had enrolled in Plan B out of the19 million who were eligible. Ironically, the greatest financial beneficiaries of Medicare’s passage were the people who opposed it most vehemently. The bill’s proponents had adopted Medicare’s insurancelike billing and payment structure in order to minimize physician opposition and chose not to attempt to control physician costs until 1984 for the same reason. As a result, between 1965 and 1970, physician fees rose 5% to 8% a year, and physician incomes rose 11% a year (roughly twice the overall cost-of-living increase) and continued to increase for the next decade and a half. The power of the healthcare industry increased, as stable Medicare payments provided giants like Baxter-Travenol and American Hospital Supply the financial resources to grow.

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Just as ironic were the unintended or unanticipated consequences of Medicare’s enactment. The most important was an almost immediate shift in concern toward cost containment and away from access to healthcare. Cost increases were immediate and significant, although they were not the result of increased utilization. Instead, they stemmed from higher costs per treatment event, a factor that is closely related to the use of new technologies (Marmor, 2000: 108; Moon, 1996). By the early 1970s, steps were taken to control costs, from PSROs to HMOs to DRGs to benefit reductions. Each of these efforts led to changes in practice (e.g., shifting care to nonhospital sites), some of which had adverse consequences for the healthcare system as a whole (e.g., hospital cost-shifting strategies, early discharge, and “DRG creep” by both physicians and hospitals). They had a mixed effect on costs, however. By the mid-1980s, the reforms, especially by the Reagan administration in 1982, created a situation in which “the nation’s senior citizens were spending the same proportion of their incomes on medical care as they had before Medicare’s enactment” (Schlesinger & Drumheller, 1988, p. 106). Although some expansion of the program did occur, most notably the 1972 addition of nonelderly disabled citizens, cost concerns now guarantee that every effort to change the program, no matter how minor, will be the subject of spirited lobbying and highly public (and rancorous) debate. As Chairman Mills predicted, rising costs built a “fence” around Medicare. Similarly, access to healthcare started to decline, especially for the poor, as hospitals reduced their pro bono and reduced cost activities. Support among seniors for expansion of the program also declined as wealthier retirees opted for “Medigap” policies, which exacerbated problems of both access and cost (Chulis et al., 1993). The final irony may be that both the administrative problems of the Medicare system (Morone, 1994) and cost increases had come under control by the end of the 1980s. Per enrollee Medicare expenditures eventually stabilized, as did overall expenditures for the program (Moon & Zuckerman, 1995; Reinhart, 1997). It is a tribute to the rhetoric of Medicare’s opponents that neither of these facts is widely understood or believed. CONCLUSION

Healthcare policymaking has long been characterized by intractable conflicts, and every citizen and every U.S. organization will continue to be influenced by the policymaking process and its outcomes. Relatively few citizens pay close attention to health policy debates, although almost all become intensely emotionally energized when they perceive that policy initiatives threaten to change their personal healthcare system. Instead, they leave healthcare politics to professional associations and organizational rhetors. As a result, more so than with other public policy issues, messages and arguments that attack healthrelated policy proposals are overwhelmingly powerful (Cobb & Kuklinski, 1997). People tend to be risk averse, especially regarding topics that have a direct impact on their lives (Kahneman, Slovic, & Tversky, 1982), and negative appeals tend to stand out more and be more memorable, especially for a populace whose attention to public policy debates is fleeting (Lau, 1985). If the populace also has come to distrust government, the power of negative appeals is magnified, especially when initiatives are complex and future consequences are unpredictable. As Cobb and Kuklinski (1997) concluded, “Under these circumstances, one argument against a proposal will speak more loudly than several in support” (p. 91). Compounding the situation further, “easy” arguments—arguments that are short, simple, and symbolic and conjure up readily accessible images—influence popular perceptions about health policy more than “hard” arguments, which are long, are complex, and focus

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on problems rather than outcomes. As a result, the dynamics of health policy discourse make it is easy for interest groups to rapidly turn public opinion against proposals for change, particularly if the proposals are comprehensive. Major reforms are by definition hard to understand, and every detail opens the entire proposal up to easy attacks. As a result, policy elites are able to mobilize public opinion against change, just as they are able to manipulate the policymaking process in ways that favor stability or incrementalism. Of course, health policy windows do open, and significant change is possible. But the nature of public policymaking and the nature health policy discourse combine to make those openings rare and to rapidly close the windows whenever they appear. REFERENCES Biersack, R., Hernson, P., & Wilcox, C. (1999). After the revolution: PACS, lobbies, and the Republican Congress. Boston: Allyn & Bacon. Cobb, R., & Ross, M. (1997). Cultural strategies of agenda denial. Lawrence, KS: Kansas University Press. Goldstein, K. (1999). Interest groups, lobbying and participation in America. Cambridge, U.K.: Cambridge University Press. Grossman, G., & Helpman, E. (2001). Special interest politics. Cambridge, MA: M.I.T. Press.

19 Working Well: Communicating Individual and Collective Wellness Initiatives Patricia Geist-Martin San Diego State University

Kim Horsley Independent Consultant

Angele Farrell Remedy Intelligent Staffing

Health is intimately connected with the places and times we inhabit. Thomas McKewon (1988) studied the history of illness and disease and concluded that in all historical eras the most common causes of sickness and death were “the prevailing conditions of life” (p. 91). Today, as we begin the new millennium, the conditions of our lives continue to significantly impact the diseases we experience. Anorexia nervosa, depression, AIDS, cancer, chronic fatigue syndrome, hypertension, and stroke are all easily recognizable, devastating diseases that plague today’s life experience. Yet, none of these diseases was significant or even recognized just 100 years ago. With most Americans spending almost 50% of their lives at work, undoubtedly organizations play a large role in constructing the conditions of a person’s life and, consequently his or her experiences of health and disease. Often this role is central to a person’s experience of health and illness, shown by the fact that 78% of people claim that work is their biggest source of stress (Quick, Quick, Nelson, & Hurrell, 1997). The effects of stress, such as poor mental and physical health, cause more employees to take sick days and put in claims for workers’ compensation—indicators that the workplace is frequently an unhealthy environment. As a result, companies are developing wellness campaigns to combat the problems arising from stress. From large corporations to small nonprofit organizations, employers in a broad spectrum of industries are implementing initiatives to make employees more comfortable at work and to positively affect the bottom line (Chenoweth, 1994; Harris, 1994). These initiatives include but are not limited to fitness and nutrition classes, smoking cessation campaigns,

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intramural sports programs, counseling, personal time off, flex-time programs, and programs in which employees earn extra vacation time in exchange for working overtime hours. However, employees do not always participate in company-sponsored wellness initiatives designed to help them. For example, owing to feelings of embarrassment, employees may not admit that they could benefit from wellness programs and may therefore limit their involvement (Schott, 1999). Employees may avoid participation because they feel uneasy about the employer’s involvement in their personal affairs or do not trust counselors to keep their health problems confidential (Murphy, Hurrell, & Quick, 1992; Stainbrook & Green, 1989). Furthermore, considering the diversity of the U.S. workforce, differences in how health is defined and treated across cultures affect individual participation. What may be considered a health concern in one culture may not be a concern in another. Similarly, an appropriate course of prevention or treatment in one culture may be stigmatized in another (Cline & McKenzie, 1998; Kreps & Thomton, 1992). Communication is central to the social environment created at work. It influences interactions among coworkers, the relationship between what people do and who they are, the ways in which people’s work time interfaces with their personal lives, and people’s overall experience of wellness and disease at work and at home. If organizations are going to promote employees’ health and create healthy workplaces, then the responsibility for change must not be placed completely on the individual. Actions need to focus on communication and the organization of work practices (Mattson, Clair, Sanger, & Kunkel, 2000). This means fostering the social and environmental conditions that promote a less stressful, healthier lifestyle and enhancing the well-being of the whole person in the context of his or her social environment (Ahmed, Kolker, & Coelho, 1979). But what does it mean to communicate in ways that promote well-being in the context of today’s organizations? If preventive models of health, including wellness models are to be effective, they must take into account individual and cultural conceptualizations of well-being. To be successful, messages must evolve from both a transmission mode of communication and a constitutive one (Craig, 1999). In the transmission view, communication is used as an instrument for achieving a desired end. Individuals’ talk at work, for instance, might be guided by their desire to be remain healthy and work productively, and an organization’s messages might be guided by its desire to educate employees and persuade them to participate in activities that promote their health and well-being. However, this transmission model of communication is limited and must be joined with a constitutive model. A constitutive model of communication is concerned not only with the act of imparting information but with the sharing and negotiating of the meanings of wellness or illness among members of an organization (Craig, 1999). Using this model, we may better understand how forms of talk at work about health, illness or anything that is of concern may or may not be possible, adequate, appropriate, comfortable, or beneficial for employees. The changing nature of work presents employees in contemporary organizations with unique health challenges, such as burnout, workaholism, stress, and the emotions that surround these issues. This chapter explores communication in the workplace as it relates to wellness and preventive health care. By examining the communication surrounding health and wellness programs and responses to such programs, we may be able to better understand what it means to work well in today’s organizations. First, we consider what it means to not be working well and the factors that contribute to making the workforce unhealthy. Next, we discuss the ways in which organizations have attempted to present health promotion messages. Finally, we describe some of the limitations of these messages by reconsidering the communication of wellness initiatives.

19. WORKING WELL

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Working well in organizations has become very different than it once was. The workplace has become a source of stress for employees, not only because of the advent of technology, the threat of a dwindling economy, and layoffs, but also because of increased demands for efficiency and productivity. Furthermore, the stress caused by their work demands can have a significant impact on employees’ health and well-being (Santa-Barbara & Coshan, 1988). Stress is a word used to describe a vague set of physiological, medical, behavioral, and psychological health states related to an individual’s adjustment to the environment, external performance demands, and physical well-being (Quick et al., 1997). The prevalence of stress has reached epidemic proportions, and its byproducts are among the leading causes of death in the United States. Stress is on the rise in the workplace partly because of the increased incidence of role overload, role conflict, and role ambiguity (Miller, Ellis, Zook, & Lyles, 1990). Reflective of its growth are the jumps in workers’ compensation awards for stress experienced at work. In California, for example, claims centering on stress-related states and illnesses rose 531% in a 6 year period (Quick et al., 1997). Overall, stress accounts for 20% of the direct costs associated with high job turnover, work stoppages and strikes, and absenteeism within organizations (Stress Management Services, 1999). Referred to as occupational or organizational stress, stress caused by work is ubiquitous across industries and generations. In 1948 Hans Selye (1956), coined the word stress as another name for “general adaptation syndrome,” or the body’s nonspecific response to any demand made on it. Selye identified two types of stress: eustress, a positive stress that promotes high performance, and distress, a negative stress that weakens a person’s abilities to cope with the challenges of life and work. Concerned about the implications of distress, scholars from the disciplines of mental health, public health, medicine, organizational psychology, and labor economics have researched negative stress in the workplace—how it occurs, how to recognize it, how to prevent it and how to overcome it (Cooper, Dewe, & O’Driscoll, 2001; Kuhn & Wooding, 1997; Levenstein & Tuminaro, 1997; McGehee, 1987; Morgan & Goldston, 1987; Scott & Jaffe, 1994). Many related factors have been shown to contribute to occupational stress, and these can be grouped into five useful categories: increasing reliance on technology, escalating demands on professional and personal time, the changing relationship between self and work, and ongoing traditional workplace problems. Whatever the cause, workplace stress continues to have a strong economic impact on individuals and organizations. Increasing Reliance on Technology

Living and working in a technologically advanced era has created a double bind in the workplace. Technological high-tech tools such as the computer, e-mail, voice mail, the fax machine, and the copier have indeed made many tasks easier and improved productivity. However, these and other technological advancements have decreased the need for personal contact and have contributed to personal isolation. There has been a breakdown in the workplace relationships that provided many people with a sense of fulfillment and continuity. As employees check mail privately at their desks instead of in the mailroom over coffee, employers use computer surveillance to achieve what was once accomplished by a manager’s watchful eye. By increasingly relying on the advancements of technology, we wind up communicating one on one with each other much less, both at work and in our personal lives.

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Technological advancements, have greatly impacted the experience of work (Maslack & Leiter, 1997) and have replaced a new set of traditional work-related health problems with stress-caused ailments. First, the heavy use of computers and video display terminals (VDTs) has been reported to be stressful to employees (Quick et al., 1997), causing eye problems, frequent headaches, and carpal tunnel syndrome. Second, the automation and technological support processes used today create jobs that are understimulating and may negatively impact health as a consequence (Decker & Borgen, 1993; Levi, 1981; Thompson, 1967). Third, where there were once overcrowded factories, there are now sick buildings. Sick building syndrome (SBS), a condition defined only recently, is diagnosed when ambiguous work-related symptoms occur at higher levels in one building than in others (Bain & Baldry, 1995). SBS symptoms include eye, throat, and skin irritation; headaches; and extreme fatigue (Hedge, Erickson, & Rubin, 1992). The symptoms are caused by contemporary environmental factors such as minimized fresh air and increased airborne pollutants that build up in heating and cooling systems (Minicucci, 1988). In sum, participation in organizations today may produce practical paradoxes— that is, the pursuit of a goal actually undermines achievement of the desired outcome. For example, as Stohl and Cheney (2001) stated, “the introduction of new technologies designed to save time often result in the acceleration of the pace of life” (p. 354). In trying to improve organizational life in terms of effectiveness and efficiency, we can produce workplace