The Family And HIV Today: Recent Research and Practice

THE FAMILY AND HIV TODAY

OTHER TITLES AVAILABLE FROM CASSELL: R. Bor and J. Elford: The Family and HIV R. Bor, R. Miller, M. Latz and H. Salt: Counselling in Health Care Settings R. Bor, R. Miller and E. Goldman: Theory and Practice of HIV Counselling

THE FAMILY AND HIV TODAY Recent research and practice Robert Bor and Jonathan Elford

CASSELL

Cassell Wellington House 125 Strand London WC2R OBB

370 Lexington Avenue New York NY 10017-6550

© Robert Bor and Jonathan Elford 1998 All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical including photocopying, recording or any information storage or retrieval system, without prior permission in writing from the publishers. First published 1998 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. ISBN 0-304-70188-2 (paperback)

Typeset by SetSystems Ltd, Saffron Walden Printed and bound in Great Britain by Redwood Books, Trowbridge, Wiltshire

CONTENTS

LIST OF CONTRIBUTORS

ix

ACKNOWLEDGEMENTS

xv

FOREWORD

xix

INTRODUCTION: THE FAMILY AND HIV Robert Bor and Jonathan Elford

xxi

DISCLOSURE 1 Self-Disclosure of HIV Infection among Men who Vary in Time since Seropositive Diagnosis and Symptomatic Status Gordon Mansergh, Gary Marks and Jane M. Simoni 2 HIV-Positive Patient's Choice of a Significant Other to be Informed about the HIV-Test Result: Findings from an HIV/AIDS Counselling Programme in the Regional Hospitals of Arusha and Kilimanjaro, Tanzania Gro Therese Lie and Paul M. Biswalo 3 Culturally Sanctioned Secrets? Latino Men's Nondisclosure of HIV Infection to Family, Friends, and Lovers Hyacinth R. C. Mason, Gary Marks, Jane M. Simoni, Monica S. Ruiz and Jean L. Richardson 4 Negotiating Sexual Relationships after Testing HIV-Positive Barry D. Adam and Alan Sears

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14

28

41

SOCIAL SUPPORT 5 Support Service Use by Persons with AIDS and their Caregivers Richard G. Wight, Allen J. LeBlanc and Carol S. Aneshensel 6 Carers' Burden and Adjustment to HIV Kenneth I. Pakenham, Mark R. Dadds and Debra J. Terry

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7 Identifying Helpful and Unhelpful Behaviours of Loved Ones: The PWA's Perspective Robert B. Hays, Robert H. Magee and Sarah Chauncey 8 Reliance by Gay Men and Intravenous Drug Users on Friends and Family for AIDS-Related Care Darcy Johnston, Ron Stall and Kevin Smith 9 Perceptions of Social Support and Psychological Adaptation to Sexually Acquired HIV among White and African American Men Larry M. Gant and David G. Ostrow

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PARTNERS 10 Family Support for Heterosexual Partners in HIV-Serodiscordant Couples Marianne Foley, Joan H. Skurnick, Cheryl A. Kennedy, Ramona Valentin and Donald B. Louria 11 The Social Dynamics of HIV Transmission as Reflected Through Discordant Couples in Rural Uganda David Serwadda, Ronald H. Gray, Maria J. Wawer, Rebecca Y. Stallings, Nelson K. Sewankambo, Joseph K. Konde-Lule, Bongs Lainjo and Robert Kelly 12 Prevention of Heterosexual Transmission of Human Immunodeficiency Virus Through Couple Counseling Nancy S. Padian, Thomas R. O'Brien, YoChi Chang, Sarah Glass and Donald P. Francis 13 Gender Differences in HIV-Related Psychological Distress in Heterosexual Couples Cheryl A. Kennedy, Joan H. Skurnick, Marianne Foley and Donald B. Louria 14 Intimacy and Sexual Risk Behaviour in Serodiscordant Male Couples Robert H. Remien, Alex Carballo-Dieguez and Glenn Wagner 15 Factors Associated with Hispanic Women's HIV-Related Communication and Condom Use with Male Partners Jan Moore, Janet S. Harrison, Kelly L. Kay, Sherry Deren and Lynda S. Doll

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150

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187

PARENTS AND CHILDREN 16 Orphan Prevalence and Extended Family Care in a Peri-Urban Community in Zimbabwe Geoff Foster, Ruth Shakespeare, Frances Chinemana, Helen Jackson, Simon Gregson, Choice Marange and Stanley Mashumba

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17 The Orphan Problem: Experience of a Sub-Saharan Africa Rural Population in the AIDS Epidemic Anatoli Kamali, Janet A. Seeley, Andrew J. Nunn, Jane F. KengeyaKayondo, Anthony Ruberantwari and Daan W. Mulder 18 Who are the Primary Caretakers of Children Born to HIV-Infected Mothers? Results from a Multistate Surveillance Project Barbara Schable, Theresa Diaz, Susan Y. Chu, M. Blake Caldwell, Lisa Conti, Ollie M. Alston, Frank Sorvillo, Patricia J. Checko, Pat Hermann, Arthur J. Davidson, Denise Boyd, S. Alan Fann, Mary Hen and Margaret Frederick 19 'We Just Want to be a Normal Family . . .'. Paediatric HIV/AIDS Services at an Inner-London Teaching Hospital Geraldine Barrett and Christina R. Victor 20 Parents with Human Immunodeficiency Virus Infection: Perceptions of their Children's Emotional Needs Virginia N. Niebuhr, Janice R. Hughes and Richard B. Pollard 21 Childhood Bereavement Due to Parental Death from Acquired Immunodeficiency Syndrome Karolynn Siegel and Eileen Gorey INDEX

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List of Contributors

Barry D. Adam

University of Windsor, Ontario, Canada

Ollie M. Alston

Michigan Department of Public Health, Detroit, Michigan, USA

Carol S. Aneshensel

UCLA School of Public Health, Los Angeles, California, USA

Geraldine Barrett

Department of Public Health, Kensington & Chelsea and Westminster Commissioning Agency, London, UK

Paul M. Biswalo

Faculty of Education, University of Dar es Salaam, Tanzania

Denise Boyd

Arizona Department of Health, Phoenix, Arizona, USA

M. Blake Caldwell

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Alex Carballo-Dieguez

HIV Center for Clinical and Behavioral Studies, Columbia University, New York, USA

YoChi Chang

Department of Obstetrics and Gynecology and Department of Epidemiology and Biostatistics, University of California, San Francisco, California, USA

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LIST OF CONTRIBUTORS

Sarah Chauncey

Department of Psychology, George Washington University, Washington, DC, USA

Patricia J. Checko

Connecticut State Department of Health Services, Hartford, Connecticut, USA

Frances Chinemana

Women and AIDS Support Network, Harare, Zimbabwe

Susan Y. Chu

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Lisa Conti

Florida Department of Health and Rehabilitative Services, Tallahassee, Florida, USA

Mark R. Dadds

University of Queensland, Australia

Arthur J. Davidson

Denver Department of Health and Hospitals, Denver, Colorado, USA

Sherry Deren

National Development and Research Institutes Inc., New York, USA

Theresa Diaz

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Lynda S. Doll

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

S. Alan Fann

Georgia Department of Human Resources, Atlanta, Georgia, USA

Marianne Foley

Texas Department of Health, Austin, Texas, USA

Geoff Foster

Paediatric Department, Mutare Hospital, Mutare, Zimbabwe

Donald P. Francis

National Centers for Prevention Services, Centers for Disease Control, Atlanta, Georgia, USA

Margaret Frederick

Washington Department of Health, Seattle, Washington, USA

Larry M. Gant

School of Social Work, University of Michigan, Ann Arbor, Michigan, USA

Sarah Glass

Department of Obstetrics and Gynecology and Department of Epidemiology and Biostatistics, University of California, San Francisco, California, USA

LIST OF CONTRIBUTORS

xi

Eileen Gorey

Memorial Sloan-Kettering Cancer Center, New York, USA

Ronald H. Gray

Johns Hopkins University School of Hygiene and Public Health, Baltimore, Maryland, USA

Simon Gregson

Infectious Disease Epidemiology Unit, University of Oxford, UK

Janet S. Harrison

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Robert B. Hays

Center for AIDS Prevention Studies, University of California, San Francisco, USA

Pat Hermann

South Carolina Department of Health and Environmental Control, Columbia, South Carolina, USA

Mary Herr

Delaware Department of Health and Social Services, Wilmington, Delaware, USA

Janice R. Hughes

Department of Pediatrics, University of Texas Medical Branch, Galveston, Texas, USA

Helen Jackson

School of Social Work, Harare, Zimbabwe

Darcy Johnston

Joint Program in Medical Anthropology, University of California, San Francisco and Berkeley, California, USA

Anatoli Kamali

Uganda Virus Research Institute, Entebbe, Uganda

Kelly L. Kay

The ORKAND Corporation Inc., Atlanta, Georgia, USA

Robert Kelly

Center for Population and Family Health, Columbia University School of Public Health, New York, USA

Jane F. Kengeya-Kayondo

Uganda Virus Research Institute, Entebbe, Uganda

Cheryl A. Kennedy

Department of Preventive Medicine and Community Health, and Department of Psychiatry, New Jersey Medical School, Newark, New Jersey, USA

Joseph K. Konde-Lule

Institute of Public Health, Makerere University, Kampala, Uganda

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LIST OF CONTRIBUTORS

Bongs Lainjo

Center for Population and Family Health, Columbia University School of Public Health, New York, USA

Allen J. LeBlanc

UCLA School of Public Health, Los Angeles, California, USA

Gro Therese Lie

Research Center for Health Promotion, University of Bergen, Norway

Donald B. Louria

Department of Preventive Medicine and Community Health, New Jersey Medical School, Newark, New Jersey, USA

Robert H. Magee

Department of Clinical Psychology, Wright Institute, Berkeley, California, USA

Gordon Mansergh

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Choice Marange

Family AIDS Caring Trust, Mutare, Zimbabwe

Gary Marks

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Stanley Mashumba

Plan International, Mutare, Zimbabwe

Hyacinth R. C. Mason

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Jan Moore

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Daan W. Mulder

Uganda Virus Research Institute, Entebbe, Uganda

Virginia N. Niebuhr

Department of Pediatrics, University of Texas Medical Branch, Galveston, Texas, USA

Andrew J. Nunn

Uganda Virus Research Institute, Entebbe, Uganda

Thomas R. O'Brien

Division of HIV/AIDS, National Center for Infectious Diseases, Atlanta, Georgia, USA

David G. Ostrow

Center for AIDS Intervention Research, University of Wisconsin-Milwaukee, USA

Nancy S. Padian

Department of Obstetrics and Gynecology and Department of Epidemiology and Biostatistics, University of California, San Francisco, California, USA

LIST OF CONTRIBUTORS

xiii

Kenneth I. Pakenham

Department of Psychology, University of Queensland, Australia

Richard B. Pollard

Division of Infectious Diseases, University of Texas Medical Branch, Galveston, Texas, USA

Robert H. Remien

HIV Center for Clinical and Behavioral Studies, Columbia University, New York, USA

Jean L. Richardson

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Anthony Ruberantwari

Uganda Virus Research Institute, Entebbe, Uganda

Monica S. Ruiz

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Barbara Schable

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Alan Sears

University of Windsor, Ontario, Canada

Janet A. Seeley

Uganda Virus Research Institute, Entebbe, Uganda

David Serwadda

Institute of Public Health, Makerere University, Kampala, Uganda

Nelson K. Sewankambo

Department of Medicine, Makerere University, Kampala, Uganda

Ruth Shakespeare

Provincial Medical Directorate, Mutare, Zimbabwe

Karolynn Siegel

Memorial Sloan-Kettering Cancer Center, New York, USA

Jane M. Simoni

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Joan H. Skurnick

Department of Preventive Medicine and Community Health, New Jersey Medical School, Newark, New Jersey, USA

Kevin Smith

Baylor College of Medicine, Houston, Texas, USA

Frank Sorvillo

Los Angeles County Health Department, Los Angeles, California, USA

Ron Stall

Center for AIDS Prevention Studies, University of California, San Francisco, California, USA

Rebecca Y. Stallings

Johns Hopkins University School of Hygiene and Public Health, Baltimore, Maryland, USA

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LIST OF CONTRIBUTORS

Debra J. Terry

University of Queensland, Australia

Ramona Valentin

Department of Preventive Medicine and Community Health, New Jersey Medical School, Newark, New Jersey, USA

Christina R. Victor

Department of Public Health, Kensington & Chelsea and Westminster Commissioning Agency, London, UK

Glenn Wagner

HIV Center for Clinical and Behavioral Studies, Columbia University, New York, USA

Maria J. Wawer

Center for Population and Family Health, Columbia University School of Public Health, New York, USA

Richard G. Wight

UCLA School of Public Health, Los Angeles, California, USA

Acknowledgements

We would like to thank the following publishers for permission to reprint the papers indicated. © 1995 Current Science Publishers Ltd © 1995 National Association of Social Chapters 1, 11 Workers, Inc. Chapter 9 © 1996 Carfax Publishing Company Chapters 2, 17 © 1994 Current Science Publishers Ltd Chapter 10 © 1995 American Psychological Association © 1993 Raven Press Chapter 3 Chapter 12 © 1994 Gordon and Breach Publishers Chapter 4

© 1995 American Academy of Pediatrics Chapter 18

© 1995 Carfax Publishing Company Chapters 5, 6, 8, 13, 14, 15,16

© 1994 American Academy of Pediatrics Chapter 20

© 1994 Carfax Publishing Company Chapters 7, 19

© 1994 Williams & Wilkins Chapter 21

LIST OF ALL ORIGINAL PUBLICATIONS, BY CHAPTER NUMBER 1 Mansergh, G., Marks, G. and Simoni, J. M. (1995) Self-disclosure of HIV infection among men who vary in time since seropositive diagnosis and symptomatic status. AIDS, 9, pp. 639-44.

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2 Lie, G. T. and Biswalo, P. M. (1996) HIV-positive patient's choice of a significant other to be informed about the HIV-test result: findings from an HIV/AIDS counselling programme in the regional hospitals of Arusha and Kilimanjaro, Tanzania. AIDS Care, 8, pp. 285-96. 3 Mason, H. R. C, Marks, G., Simoni, J. M., Ruiz, M. S. and Richardson, J. L. (1995) Culturally sanctioned secrets? Latino men's nondisclosure of HIV infection to family, friends, and lovers. Health Psychology, 14, pp. 6-12. 4 Adam, B. D. and Sears, A. (1994) Negotiating sexual relationships after testing HIV-positive. Medical Anthropology, 16, pp. 63-77. 5 Wight, R. G., LeBlanc, A. J. and Aneshensel, C. S. (1995) Support service use by persons with AIDS and their caregivers. AIDS Care, 7, pp. 509-20. 6 Pakenham, K. I., Dadds, M. R. and Terry, D. J. (1995) Carers' burden and adjustment to HIV. AIDS Care, 1, pp. 189-203. 7 Hays, R. B., Magee, R. H. and Chauncey, S. (1994) Identifying helpful and unhelpful behaviours of loved ones: the PWA's perspective. AIDS Care, 6, pp. 379-92. 8 Johnston, D., Stall, R. and Smith, K. (1995) Reliance by gay men and intravenous drug users on friends and family for AIDS-related care. AIDS Care, 1, pp. 307-19. 9 Gant, L. M. and Ostrow, D. G. (1995) Perceptions of social support and psychological adaptation to sexually acquired HIV among white and African American men. Social Work, 40, pp. 215-24. 10 Foley, M., Skurnick, J. H., Kennedy, C. A., Valentin, R. and Louria, D. B. (1994) Family support for heterosexual partners in HIV-serodiscordant couples. AIDS, 8, pp. 1483-7. 11 Serwadda, D., Gray, R. H., Wawer, M. J., Stallings, R. Y., Sewankambo, N. K., Konde-Lule, J. K., Lainjo, B. and Kelly, R. (1995) The social dynamics of HIV transmission as reflected through discordant couples in rural Uganda. AIDS, 9, pp. 745-50. 12 Padian, N. S., O'Brien, T. R., Chang, Y., Glass, S. and Francis, D. P. (1993) Prevention of heterosexual transmission of human immunodeficiency virus through couple counseling. Journal of Acquired Immune Deficiency Syndromes, 6, pp. 1043-8. 13 Kennedy, C. A., Skurnick, J., Foley, M. and Louria, D. B. (1995) Gender differences in HIV-related psychological distress in heterosexual couples. AIDS Care, 7 (Suppl. 1), pp. 33-8. 14 Remien, R. H., Carballo-Dieguez, A. and Wagner, G. (1995) Intimacy and sexual risk behaviour in serodiscordant male couples. AIDS Care, 7, pp. 429-38.

ACKNOWLEDGEMENTS

xvii

15 Moore, J., Harrison, J. S., Kay, K. L., Deren, S. and Doll, L. S. (1995) Factors associated with Hispanic women's HIV-related communication and condom use with male partners. AIDS Care, 7, pp. 415-27. 16 Foster, G., Shakespeare, R., Chinamana, F., Jackson, H., Gregson, S., Marange, C. and Mashumba, S. (1995) Orphan prevalence and extended family care in a peri-urban community in Zimbabwe. AIDS Care, 7, pp. 1—15. 17 Kamali, A., Seeley, J. A., Nunn, J., Kengeya-Kayondo, J. F., Ruberantwari, A. and Mulder, D. W. (1996) The orphan problem: experience of a sub-Saharan Africa rural population in the AIDS epidemic. AIDS Care, 8, pp. 509-15. 18 Schable, B., Diaz, T., Chu, S. Y., Caldwell, M. B., Conti, L., Alston, O. M., Sorvillo, F., Checko, P. J., Hermann, P., Davidson, A. J., Boyd, D., Fann, S. A., Herr, M. and Frederick, M. (1995) Who are the primary caretakers of children born to HIV-infected mothers? Results from a multistate surveillance project. Pediatrics, 95, pp. 511-15. 19 Barrett, G. and Victor, C. R. (1994) 'We just want to be a normal family . . .'. Paediatric HIV/AIDS services at an inner-London teaching hospital. AIDS Care, 6, pp. 423-33. 20 Niebuhr, V. N., Hughes, J. R. and Pollard, R. B. (1994) Parents with human immunodeficiency virus infection: perceptions of their children's emotional needs. Pediatrics, 93, pp. 421-6. 21 Siegel, K. and Gorey, E. (1994) Childhood bereavement due to parental death from acquired immunodeficiency syndrome. Developmental and Behavioral Pediatrics, 15, pp. S66-S70. We gratefully acknowledge the help and support of Elaine Harris who painstakingly prepared the manuscript, and Naomi Roth, our publisher at Cassell, for her continued interest and encouragement.

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Foreword

Uncertainty, rapid change and huge emotional and ideological significance are characteristics of both of the fields brought together in this volume. The orthodoxies of even five years ago about family functioning are no longer adequate, and our understanding of HIV changes at lightning speed as models are declared obsolete and new ones take their place, yesterday's medication is declared inadequate and new drugs produced, and last year's life-threatening illness now merits only a few days in hospital. Both HIV and the family are also the subject of powerful emotional responses from social and political groupings which regard them as being in direct opposition to each other. HIV and the family are both hugely salient topics in our society - one needs look no further in the West than the public and media responses around the legitimacy of single motherhood or the morality of not disclosing one's HIV status to sexual partners. Nor is this situation any different outside the developed nations: opposing parties debate heatedly the decadence or progressiveness of Western values around notions of the family and the place of women and children in it, and Western liberal attitudes to HIV, sex and recreational drug use are brought under intense scrutiny by secular, political and religious leaders. It is against this background that this volume on HIV and the family needs to be read. There is a need for a book such as this which, like the first volume of The Family and HIV, presents us with research and information aimed at a better understanding of the field. This volume makes available to researchers and clinical practitioners some snapshots of what is actually going on for people how HIV is affecting their lives, how HIV is affecting them in their social and familial relationships. This volume will provide a much-needed source by which to improve our

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FOREWORD

understanding of changes in society and social groupings. The term 'family' itself is notoriously indefinable; distinguishing between family of origin and family of choice is not an adequate distinction at the end of the twentieth century, when the use of the word 'family' can imply a whole range of social, political or religious beliefs. The research in this book helps us to understand better the ways in which people are associating with one another in meaningful social units. Further, the work outlined in this book helps us to understand illness not just in a social context, but illness and responses to it as a social context, as a fundamental part of relationships and family life. Of course, the challenge which this work throws up is how best to use the research as practical underpinning for the provision of services for people affected by HIV, not just for people on their own but rather as a part of a network of social and familial relationships. The need for detailed information about what is going on in families and between couples affected by HIV is clear. This book, and its predecessor, provide an ongoing response to that need - ongoing because the nature of HIV disease is not static and changes constantly. I hope that others will be inspired to take up and continue this ongoing work. Darren Wolf Counselling Services Manager Terrence Higgins Trust April 1998

Introduction: The Family and HIV Robert Bor and Jonathan Elford

The first volume of The Family and HIV highlighted the impact of HIV on the family in its broadest sense. Traditionally, the family is seen to provide support for people when they are ill. However, because of the associated stigma and possible risk of transmission, HIV can have an impact on choice of partners, availability of support, relationships with children and psychological well-being of family and friends. Additionally, HIV raises questions about the construct of 'family', which may comprise parents, grandparents, spouse, children and other relatives (family of origin) as well as friends and partners (family of affiliation). While there have been rapid advances in treatment and care, the number of people living with HIV globally continues to increase, as does the number of those affected. Consequently, HIV remains an issue for both the family of origin and affiliation while the dynamics of family relationships remain in turn important to people with HIV. For these reasons alone, it seemed timely to revisit the subject of family and HIV. What are the issues that have emerged in the last few years around HIV and the family? Two of the most prominent are disclosure of HIV status and children who are orphaned as a result of HIV. Disclosure touches upon stigma, discrimination and access to social support. Research in this area has received greater attention in the last few years than previously. Children have long been affected by HIV but, as parents with HIV have become unwell and died, orphanhood has emerged in recent years as a concern that requires attention. Other topics, such as social support and the impact of HIV on couples and partners, continue to be of importance. Much research has been conducted in these areas since publication of the first volume of The Family and HIV, some of which is included here.

xxii INTRODUCTION

DISCLOSURE Patterns of disclosure help us understand a person's experience and fear of stigma. In the USA, patterns of disclosure varied according to length of time since HIV diagnosis, stage of illness and the relationship with the person they told (Mansergh et al., Chapter 1). Contrary to popular widsom, the authors found that the family — of origin or affiliation — was generally supportive following disclosure of HIV status. On the other hand, Lie and Biswalo (Chapter 2) reported that HIV-infected adults in Tanzania generally did not disclose their HIV status to their spouse or partner, but were more likely to tell somebody else within the extended family to whom they were close. A study of Latino and white men in the USA revealed that Latinos were less likely than white men to disclose their HIV status to family, friends or lovers (Mason et al., Chapter 3). Among Latinos, Spanish-speaking men were in turn less likely to have revealed their status than English-speaking men. From Canada comes a report on the repercussions of the disclosure of HIV status on current and new relationships (Adam and Sears, Chapter 4). Occasionally disclosure of HIV seropositivity by men or women was used to discourage would-be suitors. Clearly, patterns of disclosure need to be studied in context, since they vary enormously between different groups and settings.

SOCIAL SUPPORT The link between social support and psychological well-being is well established for people who are ill; however, the welfare of carers is often overlooked. From the USA, Wight et al. (Chapter 5) reported that not only did people with HIV require both formal (institutional) and informal (family and friends) support but that the care-givers themselves had an equal need for support. In Australia, Packenham et al. (Chapter 6) found a high degree of correlation 'between patients' and carers' level of adjustment . . . indicating that both patient and carer cope well together or have many problems together'. The authors used the term 'synchrony' between carer and patient to describe this phenomenon. A Washington, D.C. study identified behaviours of carers which were helpful or unhelpful from the point of view of the person with AIDS. Since some carers may inadvertently act in a way that may be perceived to be unhelpful by the person with AIDS, these findings may help to build their support skills (Hayes et al., Chapter 7). Among people with AIDS in San Francisco, gay men relied more on their friends for support - instrumental and emotional - than did drug users (Johnston et al., Chapter 8). Both groups tended not to turn to the family of origin for support. Meanwhile, a word of caution is expressed by Gant and Ostrow (Chapter 9) that the relationship between social support and psychological well-being may not be generalizable to all groups. While, in their study, there was a positive association between social support from friends and family and psychological measures among white American males, there was a negative

INTRODUCTION xxiii

relationship between these variables for African American men. Taken together, these studies among people with HIV suggest that attention should continue to be paid to the nature of social support provided, its impact on psychological wellbeing and the welfare of carers.

PARTNERS HIV within an established relationship presents challenges to each partner, their family and friends. Foley et al. (Chapter 10) conducted a study in New Jersey, USA, among heterosexual couples where one person was HIV-positive and the other was not (serodiscordant). The level of support for the couple provided by family members (e.g., brothers, sisters, parents) varied according to level of education, ethnicity and whether the person affected was HIV-positive. In a study among serodiscordant heterosexual couples in rural Uganda (Serwadda et al., Chapter 11), condom use was more common when the male partner was HIV-positive than when the female was. Preventive behaviour varied according to the sex of the infected partner, highlighting in particular the vulnerability of women in relationships to the risk of HIV infection. In San Francisco, a couplecounselling intervention among serodiscordant heterosexual couples found that condom use and sexual abstinence increased during follow-up (median 1.5 years) (Padian et al., Chapter 12). No new infections were reported in the couples during that period. In a study in the USA among heterosexual couples where at least one, if not both, of the partners was HIV-positive, two-thirds had told their immediate family about their HIV status. However, only half the families who were aware of the participant's HIV status were reported as being supportive (Kennedy et al, Chapter 13). Among serodiscordant male couples in New York, sexual risk behaviour was associated with intimacy and the length of the relationship (Ramien et al., Chapter 14). The authors suggested that interventions among male couples need to recognize the barriers to safer sex reported by this group. Condom use among couples who are not infected but who are at risk of HIV infection has also been examined. In the USA, the quality of communication between Hispanic women and their primary partner strongly influenced the use of condoms, as did the women's expectations of a negative reaction from their partner (Moore et al., Chapter 15). The papers in this section indicate that negotiating condom use within a relationship may challenge notions of intimacy, trust and power, which may need to be addressed.

PARENTS AND CHILDREN HIV in children and parents can have a ripple effect, spreading beyond the immediate family. In Zimbabwe, the extended family assumed a caring role for children orphaned due to HIV-related death. It was reported that members of the maternal family usually looked after orphaned children, which was a departure

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INTRODUCTION

from traditional practice (Foster et al., Chapter 16). A follow-up study among children in Uganda found that nearly half were orphaned as a result of an HIVrelated death of a parent (Kameli et al., Chapter 17). Generally, orphans lived with their surviving parent or extended family, but concern was expressed that the ability of the adoptive family to provide support may be over-stretched in the future. In a study of HIV-infected women with children in the USA, the most common primary provider of care for the children was the mother alone (Schable et al., Chapter 18). These women would benefit from increased child-care assistance and, in particular, from making provision for the children when they become ill themselves. Mothers who found themselves in this predicament in the UK expressed a preference for hospital services rather than primary care and community services, suggesting that the latter require further development (Barrett and Victor, Chapter 19). A survey among HIV-infected parents in the USA found that only half of them had told their children over the age of 4 years about their HIV status (Niebuhr et al., Chapter 20). An equal proportion said that they did not need help dealing with their children in relation to AIDS, and even more felt their children did not need to talk to anyone about HIV in the family. Siegel and Gorey (Chapter 21) examined the process of grieving among the uninfected children of mothers who die from AIDS, and adjustment to parental death in childhood. They emphasized the need to identify factors which increase the risk of pathological grief reactions in children. These papers highlight the multifaceted impact of HIV infection on parents and children, both immediate and long-term. While this book has attempted to be global in its approach, however, there is a noticeable absence of research on the family and HIV from Asian and Central/ South American countries, in marked contrast to the work that has been done in sub-Saharan Africa, the USA, the UK and Australia. Nonetheless, research findings gathered in one country may be transferable to other settings, although local conditions clearly need to be considered. The first volume of The Family and HIV emerged partly because HIV raised issues that had not been addressed for other illnesses, because of the associated stigma and potential risk of transmission. Paradoxically, the work around the family and HIV has in turn shed light on how illnesses other than HIV affect families and relationships. The ideas contained in this volume may therefore have wider application than was originally envisaged. We believe that the exchange of insights into HIV and other illnesses among family members, health workers and caregivers can only be mutually beneficial.

DISCLOSURE

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ONE

Self-Disclosure of HIV Infection among Men who Vary in Time since Seropositive Diagnosis and Symptomatic Status Gordon Mansergh, Gary Marks and Jane M. Simoni

INTRODUCTION Disclosing one's HIV-seropositive status to a significant other is a pivotal step toward gaining HIV-related social support. Social support decreases the effects of stress (Cohen and Wills, 1985; Wethington and Kessler, 1986; Cohen, 1988; Siegel and Krauss, 1991; Wills, 1991) and facilitates coping with illness (Kulik and Mahler, 1989; Dunkel-Schetter et al., 1992; King et al, 1993). Among persons with HIV disease, satisfaction with informational support lessens the effect of HIV-related physical symptoms on psychological distress (Hays et al., 1992), and integration in social networks is related to better psychological adjustment (Kelly et al., 1993). An additional benefit is that informing an intimate lover may lead to safer sexual practices that may stem the spread of disease (Marks et al., 1994). Previous studies have not addressed disclosure during the early periods following an HIV-positive diagnosis, which is a time of heightened distress and acute need for support. Specifically, what are the rates of disclosure to friends, intimate lovers, and family members among recently diagnosed individuals (i.e. those who have known about their seropositive status only a few months)? Past reports have not clarified this issue because disclosure prevalence rates were calculated across entire samples of respondents who varied considerably in length of time since initial diagnosis (Marks et al., 1992; Hays et al., 1993; Mason et al., 1995; Simoni et al., 1995). Further, what are the rates of disclosure beyond the first few months, and do these rates differ for persons with asymptomatic versus symptomatic disease? Symptomatic status is important to consider because emerging symptoms may heighten anxiety and increase need for social support, which may motivate disclosure or render it unavoidable. Studies have shown that length of time since

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G. MANSERGH et al.

HIV diagnosis correlated positively with an aggregated disclosure index (i.e., proportion of significant others informed) and that symptomatic men had informed a greater number of persons than asymptomatic men (Hayes et al., 1992; Marks et al., 1992; Mason et al., 1995). These studies are limited, however, in that they do not provide data on disclosure prevalence rates for individuals at distinct time periods after diagnosis, examine the relationship between time since diagnosis and disclosure for individual target persons, or address whether the time-disclosure relationship differs for symptomatic versus asymptomatic persons. The present study addresses these issues by examining person-specific disclosure of HIV infection to significant others among groups of men who varied in time since initial HIV diagnosis and symptomatic status. This study also examines the interpersonal consequences of informing others. Although disclosure may be crucial to obtaining HIV-related social support, one risks personal rejection by disclosing a seropositive status (Kelly et al., 1987; Hays et al., 1993; Simoni et al., 1995). Expanding on the work of Hays et al. (1993), who assessed with a single item 'how helpful' significant others were following disclosure, we examined reactions of emotional support, withdrawal, and anger. We compared reactions rated by those who disclosed with reactions anticipated by those who had not disclosed their infection status. METHODS Sample Recruitment

The study was conducted at two HIV-outpatient clinics in Los Angeles, California, USA during 1991-1992. One clinic was part of a large healthmaintenance organization (HMO), and the other was part of a large public medical center. Bilingual research assistants, who were not personally familiar with the patients, were stationed at each clinic and trained to implement a standardized set of selection and recruitment procedures. They randomly selected one primary and two alternate patients for every 1-hour time block from each clinic's daily appointment schedule. Both men and women were selected; however, only data on men were included in this analysis because the limited sample of women restricted reliability. Individuals were recruited in the waiting area of the clinics. Alternates were approached if the primary patient did not keep his or her appointment or was ineligible. Only three individuals failed to meet the following eligibility criteria: HIV-seropositive for more than 2 months, English- or Spanish-speaking, at least 18 years of age, and judged by medical personnel to be physically and mentally able to provide reliable questionnaire responses. Of the eligible patients approached, 82% at the HMO clinic and 96% at the public clinic agreed to participate. Those who declined did not differ from study respondents in age, education, or ethnicity.

SELF-DISCLOSURE OF HIV INFECTION 5

Questionnaire Administration After providing written informed consent, respondents self-administered a confidential English or Spanish questionnaire in a private section of the clinic. Completed questionnaires were sealed in envelopes and deposited in a collection box. Respondents used five-digit identifiers which they created by choosing numbers from zero to nine at random. The identifiers were used to link questionnaires with information abstracted from medical charts. Measures Respondents reported the time since discovering they were HIV-seropositive (2-4, 5-12, 13-24, 25-48, > 49 months). These five time intervals were used in a cross-sectional analysis of the association between time since HIV diagnosis and disclosure. Respondents also indicated their current HIV status (asymptomatic, symptomatic, or AIDS) which was compared to diagnostic data abstracted from medical charts; agreement was obtained for approximately 80% of respondents. Self-reported diagnostic groups were used in the analyses. The men indicated (yes or no) whether they had disclosed their HIV infection to their mother, father, sister, brother, closest friend (either male or female), and intimate lover. If the target was not applicable (e.g., no intimate lover, mother deceased before respondent knew he was HIV-seropositive), the respondent was excluded from the analysis of that specific target. Additional analyses were performed with an overall disclosure index calculated as the percentage of applicable targets informed. To assess the emotional and interpersonal reactions of the mother, father, friend, and intimate lover to self-disclosure, we asked 'If your [target] knows that you have HIV, how has s/he reacted?' For each target, respondents rated on a scale from never (1) to always (4) the following reactions: provided emotional support, withdrew from you, became angry at you. We refer to these ratings as 'actual reactions' to disclosure. The men also indicated whether informed intimate lovers reacted by leaving them. If a target had not been informed of the respondent's seropositive status, then the respondent rated how he thought the target would react on these three dimensions if the target found out (i.e., 'anticipated reactions'). Using standard response formats, the men indicated their ethnicity, age, and education. Sexual orientation was assessed by asking: 'With whom do you usually have sex?' Those who responded 'men only' were grouped as homosexual; those who responded 'mostly men', 'men and women equally', or 'mostly women' were grouped as bisexual; and those who responded 'women only' were grouped as heterosexual. Statistical Analyses The prevalence of disclosure to each target was calculated separately for subgroups of respondents who differed in time since HIV diagnosis and

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symptomatic status. The cross-sectional association between time and disclosure was assessed with Mantel-Haenszel %2 tests (d.f. = 1) of linear trend. Two-tailed Fisher's exact tests were used to examine differences in disclosure rates between discrete groups. The independent effects of time and symptomatic status on disclosure were assessed with logistic regression models which adjusted for ethnicity, age, education, sexual orientation, and clinic site. Finally, mean-level differences between actual and anticipated reactions to disclosure were evaluated with between-groups analysis of variance (i.e., F test).

RESULTS Sample The analytic sample consisted of 684 men with complete data on sociodemographic and medical variables. Only eight men were deleted due to missing data. Approximately half of the men were from the HMO and half were from the public clinic. Overall, 42% were Latin American, 40% were white, 15% were African American, and 3% were of other ethnicities. One-third of the sample had a 2-year college degree or higher; median age was 36 years. Overall, 63% of the men were homosexual, 28% bisexual, and 9% heterosexual. Preliminary analyses revealed that homosexual and bisexual men had highly similar patterns of disclosure. Therefore, these two groups were pooled in the analysis (homosexual/bisexual versus heterosexual). Fewer than half (42%) of the men had symptomatic disease or AIDS, thus these two diagnostic groups were combined (symptomatic/AIDS versus asymptomatic). Respondents were distributed across the time intervals since HIV diagnosis as follows: 2-4 months, 12%; 5-12 months, 12%; 13-24 months, 17%; 25-48 months, 31%; > 49 months, 28%. Univariate Analyses Figure 1.1 displays the prevalence of disclosure to each significant other, stratified by time interval and diagnostic category. Most strikingly, the rate of disclosure to each target was higher among symptomatic than asymptomatic respondents in each time interval. To provide a general test of the differences, we pooled the time intervals for each target and then examined the association between symptomatic status and disclosure. Two-tailed Fisher's exact tests yielded significant differences (P < 0.001) in disclosure to mother (42% (128 out of 300) versus 67% (155 out of 231)), father (23% (55 out of 242) versus 48% (77 out of 161)), friend (73% (275 out of 378) versus 88% (238 out of 271)), sister (46% (146 out of 320) versus 64% (149 out of 232)), and brother (40% (129 out of 323) versus 60% (142 out of 235)). A diminished, although still significant, effect was found for intimate lover (86% (189 out of 219) versus 93% (146 out of 157); P < 0.05). Figure 1.1 also shows that, for each target, disclosure rates were considerably lower among recently diagnosed men than those diagnosed less recently. To test

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7

oc

OC

Figure 1.1 Rates of disclosure (%) to significant others by length of time (mn, months) since HIV-positive diagnosis and symptomatic status: • asymptomatic respondents; 0 respondents with symptomatic disease or AIDS

this effect, we pooled across symptomatic status within each time interval and then examined the linear relationship between time and disclosure for each target. Mantel-Haenszel %2 tests (d.f. = 1) demonstrated significant (P < 0.001) linear trends for disclosure to mother (19.65), father (16.86), friend (32.67), sister (21.18), and brother (23.41). The trend for intimate lover was not significant, due largely to a ceiling effect. Visual inspection of Figure 1.1 indicates that the trends appear to be stronger and more uniform among asymptomatic than symptomatic men. A second set of

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Mantel-Haenszel tests was conducted to examine this apparent effect. For asymptomatic men, there were highly significant (P < 0.001) linear trends for each target except intimate lover (again due to a ceiling effect). This picture was not as clear, however, for symptomatic men. Significant trends (P < 0.05) emerged only for disclosure to friend and brother; a marginal trend (P = 0.06) was found for mother. Thus, there appears to be a rather uniform unfolding of disclosure to significant others among asymptomatic persons, and a more irregular pattern among symptomatic persons due presumably to the effect of variably emerging symptoms on disclosure. Finally, the rates of disclosure differed across the six significant others (Figure 1.1). The differences were especially pronounced among the men who were recently diagnosed. Disclosure to intimate lovers and friends far exceeded disclosure to family members; very few respondents had informed their fathers. We refrained from conducting formal statistical comparisons of these disclosure rates, because some targets were applicable for some but not for other respondents. Multivariate Analyses To provide greater statistical control over potential confounding effects, we conducted a set of multivariate logistic regression analyses of target-specific disclosure. The model for each target contained the following variables entered into the equation simultaneously: diagnostic group (asymptomatic versus symptomatic/AIDS), time (five intervals), age (continuous), ethnicity (whites versus others), education (continuous), sexual orientation (homosexual/bisexual versus heterosexual), and clinic site (HMO versus public). In these controlled analyses, disclosure to each of the six targets was significantly more likely among symptomatic than asymptomatic men. The unstandardized regression coefficients (b) ranged from 0.23 (s.e. = 0.06; P < 0.001) to 0.38 (s.e. = 0.08; P < 0.001). Also, the likelihood of disclosure to each target (except intimate lover) increased with time since HIV diagnosis. The unstandardized coefficients ranged from b = 0.25 (s.e. = 0.07; P < 0.001) to 0.31 (s.e. = 0.08; P < 0.001). Two consistent effects were seen with respect to the sociodemographic variables. Disclosure was generally more likely among white men (versus others) and among those with more education. Age, sexual orientation, and clinic location showed no consistent association with disclosure. We conducted a second set of logistic regression models to examine whether time interacted with symptomatic status in predicting disclosure. For these analyses, an interaction term was added to the main effect model described above. Results indicated that the interaction term fell short of statistical significance for each disclosure target. Thus, although the patterns of disclosure across time show some apparent differences between asymptomatic and symptomatic men (Figure 1.1), the differences were not significant in multivariate analyses.

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Table 1.1 Percentage of respondents who had not disclosed their HIV-seropositive status to any of the six targets by length of time since HIV-positive diagnosis and symptomatic status. Time (months) since HIV-positive diagnosis (% (n/total)) Status Asymptomatic Symptomatic/AIDS

2-4

5-12

13-24

25-48

>49

20.7(12/58) 9.5(2/21)

21.7(13/60) 4.3(1/23)

6.7 (5/75) 2.3(1/44)

6.6(7/106) 2.9(3/103)

7.1 (7/98) 5.3 (5/94)

Index of Non-Disclosure of HIV Infection Using the overall disclosure index (i.e., proportion of applicable targets informed), we divided respondents into two groups: those who had withheld disclosure from each applicable target and those who had informed at least one target. Among those diagnosed in the previous 2-4 months, 21% of asymptomatic men had not informed any applicable target (Table 1.1). Approximately the same nondisclosure rate appeared among asymptomatic men diagnosed 5-12 months prior to the survey. These rates were considerably higher than the rates obtained for the other eight time-symptomatology subgroups. Results of two-tailed Fisher's exact tests demonstrated that the two most recent asymptomatic groups pooled (i.e., < 1 year since HIV diagnosis) differed significantly (P < 0.01) from each of the three longer-term asymptomatic and symptomatic groups (i.e., 13-24, 25-48, and > 49 months). The pooled asymptomatic group did not differ significantly from the two recent symptomatic groups (2-4 and 5-12 months) due primarily to small subgroup sample sizes. Consequences of Disclosure Respondents' ratings of how their intimate lover, friend, mother, and father reacted to disclosure were also examined. There were a few cases in which a target was informed by someone other than the respondent. These cases were omitted from the consequences analysis to provide a pure assessment of reactions to self-disclosure. Among the disclosers, we calculated the percentage who reported that the target never, sometimes, frequently, or always provided emotional support, withdrew, or became angry. The men generally reported favorable reactions to disclosure (Table 1.2). However, some important exceptions should be noted. First, fathers were reported to be emotionally supportive less often than mothers, friends, and intimate lovers. Second, fathers and intimate lovers (as opposed to mothers and friends) had a somewhat greater tendency to withdraw after they were informed. Third, intimate lovers were more frequently seen as becoming angry than the other three targets. Fourth, 10.4% of respondents reported that their intimate lovers left them after they were informed. We compared the actual reactions among those who had disclosed with the anticipated reactions with those who had not by calculating summary indices

10 G. MANSERGH et al.

Table 1.2 Respondents' ratings of reactions of significant others to disclosure of HIV infection. Frequency of reaction (%) Reactions Provided emotional support Intimate lover Friend Mother Father Withdrew Intimate lover Friend Mother Father Became angry Intimate lover Friend Mother Father

Never

Sometimes

Frequently

Always

2.4 1.4 5.4 13.8

17.6 11.7 22.7 25.4

14.6 21.4 13.6 22.3

65.4 65.5 58.3 38.5

68.6 88.0 84.2 68.5

24.3 10.6 11.9 20.0

4.3 1.0 2.2 3.8

2.8 0.4 1.7 7.7

60.7 75.9 74.9 72.1

33.7 22.9 20.8 24.0

2.8 0.4 2.9 0.8

2.8 0.8 1.4 3.1

Sample sizes were 329 for intimate lover, 510 for friend, 279 for mother, and 130 for father. There were a few instances of missing data; thus, the number of subjects in this analysis was slightly smaller than the number of subjects who had informed a target.

separately for disclosers and non-disclosers. An index of actual reactions among disclosers was calculated by averaging the men's responses to the three dimensions separately for each target. The dimensions of withdrawal and anger were receded so that higher index scores reflected more favorable reactions. The internal reliability (alpha) for the three dimensions was 0.72 for mother, 0.77 for father, 0.75 for intimate lover, and 0.48 for friend. Indices of anticipated reactions among non-disclosers were created in a similar manner. Internal reliability ranged from 0.63 to 0.84. For each of the four targets, the actual reactions to disclosure were more favorable than the anticipated reactions rated by non-disclosers. Comparisons with F tests indicated that the mean differences were significant (P < 0.001) for friend (3.70 versus 3.30), intimate lover (3.51 versus 2.62), father (3.33 versus 2.79), and slightly attenuated for mother (3.56 versus 3.44; P < 0.05). Although mean actual reactions exceeded mean anticipated reactions, the latter fell above the midpoint of the scale (2.5) for each target. This indicates that even the nondisclosers anticipated relatively favorable consequences of disclosure.

DISCUSSION The findings revealed that a large percentage of men who were recently diagnosed with HIV infection disclosed their seropositive status to intimate lovers and friends. Fewer had informed their mothers, brothers, or sisters, and disclosure to fathers was extremely low. Analyses of five cross-sectional time intervals indicated that disclosure rates increased with time since HIV diagnosis. Also, the rates

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were clearly higher among men with symptomatic than asymptomatic disease. These results were obtained with a multi-ethnic sample of mainly homosexual and bisexual men who were visiting HIV-outpatient clinics in Los Angeles. Caution should be taken in generalizing the findings to other populations. One might argue that men in the five time intervals differed not only in time since HIV diagnosis but in other ways as well, which may have confounded the association between time and disclosure. While it is difficult to rule out all potential confounding factors, the association persisted in multiple regression analyses that were statistically controlled for several demographic and medical variables. Similar control was imposed in our analysis of the association between symptomatology and disclosure. However, we recognize the limitations of using cross-sectional methodology to investigate what is inherently a within-subjects process. Ultimately, longitudinal investigations are needed to fully illuminate the psychological and interpersonal dynamics of disclosure. Another limitation is that we cannot pinpoint exactly when a disclosure occurred after HIV diagnosis. For example, among those who tested HIVseropositive 1 year previously and reported that they had informed their mother, disclosure could have occurred at any time during that year. Despite this limitation, the study identified the proportion of men who had disclosed to a target by a particular time interval after diagnosis. Similarly, we were able to ascertain the proportion who had not disclosed to a target by a specific timepoint. This study has identified a potentially hidden group of HIV-seropositive persons who, although not currently suffering from physical symptoms of HIV disease, may be suffering socially and psychologically. We found that among those who had been diagnosed in the previous year, a much larger proportion of asymptomatic (21%) than symptomatic (<10% men) had not informed any of the six significant others considered in the current investigation. Withholding one's seropositive status from all significant others may exacerbate the anxiety and stress that most HIV-seropositive persons experience soon after confirmation of their infection (Forstein, 1984; Stulberg and Smith, 1988; Tross and Hirsch, 1988). Some of our respondents may have received HIV-related support from providers or fellow patients at clinics or community organizations. However, these individuals are probably less accessible and their assistance less consistent and reciprocal than ongoing support from friends, intimate lovers, and immediate family members. Our findings paint a fairly encouraging picture of the consequences of informing significant others. The actual consequences for those men who disclosed were somewhat more favorable than the consequences anticipated by non-disclosers. However, the mean ratings of anticipated and actual reactions were above the mid-point of the rating scales for each significant other. This does not signify that non-disclosers would experience the same favorable reactions as that reported by disclosers. Non-disclosers may have chosen not to inform others because they accurately anticipated more negative responses. However, the overall findings suggest that disclosure of HIV-seropositive status to significant

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others is likely to have favorable emotional and interpersonal outcomes for most seropositive persons. Other studies support this conclusion (Schnell et al., 1992). Disclosure should perhaps be encouraged, especially among recently diagnosed asymptomatic men who may be at risk of social isolation, as suggested by our findings. We should not make any generalized recommendations regarding disclosure other than to say that it is important for those who work with HIVseropositive persons to discuss with them the issue of disclosure and, if appropriate, encourage them to inform potentially supportive significant others. Counselors must consider other factors before offering recommendations regarding disclosure. First, homosexual or bisexual individuals who have not 'come out' will probably be less psychologically prepared to inform others about an HIVseropositive diagnosis. Second, counselors must consider the multiple motives underlying decisions about disclosure of HIV infection, and the prospect that those motives may differ among ethnic groups. For example, this study focused on self-relevant consequences of disclosure: emotional support, withdrawal, and anger. While these consequences may help explain a portion of the variance in disclosure across respondents, recent research indicates that decisions about disclosure are also influenced by the perceived consequences to others (Hays et al., 1993; Mason et al., 1995). For example, some HIV-seropositive individuals may refrain from informing their parents to prevent worrying them rather than to avoid personal rejection. In fact, this tendency has been found to be stronger among Latin Americans than non-Latin-American whites (Mason et al., 1995). Further, some individuals may inform significant others because they see it as the responsible thing to do, not because they desire emotional support. Future studies are needed to clarify the relative importance of these motives on disclosure of HIV infection among seropositive men and women.

REFERENCES Cohen, S. (1988) Psychological models of the role of social support in the etiology of physical disease, Health Psychology, 7, pp. 269-297. Cohen, S. and Wills, T. A. (1985) Social support, stress, and the buffering hypothesis, Psychological Bulletin, 98, pp. 310-357. Dunkel-Schetter, C., Feinstein, L. G., Taylor, S. E., Falke, R. L. (1992) Patterns of coping with cancer, Health Psychology, 11, pp. 79-87. Forstein, M. (1984) The psychosocial impact of the acquired immunodeficiency syndrome, Seminars in Oncology, 11, pp. 77-82. Hays, R. B., Turner, H., Coates, T. J. (1992) Social support, AIDS-related symptoms, and depression among gay men, Journal of Consulting and Clinical Psychology, 60, pp. 463-469. Hays, R. B., McKusick, L., Pollack, L., Hillard, R., Hoff, C., Coates, T. J. (1993) Disclosing HIV seropositivity to significant others, AIDS, 1, pp. 425-431. Kelly, J. A., St Lawrence, J. S., Smith, S., Hood, H. V., Cook, D. J. (1987) Stigmatization of AIDS patients by physicians, American Journal of Public Health, 77, pp. 789-791. Kelly, J. A., Murphy, D. A., Bahr, G. R. (1993) Factors associated with severity of depression and

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high-risk sexual behavior among persons diagnosed with human immunodeficiency virus (HIV) infection, Health Psychology, 12, pp. 215-219. King, K. B., Reis, H. T., Porter, L. A., Norsen, L. H. (1993) Social support and long-term recovery from coronary artery surgery: effects on patients and spouses, Health Psychology, 12, pp. 56-63. Kulik, J. A. and Mahler, H. I. M. (1989) Social support and recovery from surgery, Health Psychology, 8, pp. 221-238. Marks, G., Bundek, N., Richardson, J. L., Ruiz, M. S., Maldonado, N., Mason, H. R. C. (1992) Selfdisclosure of HIV infection: preliminary results from a sample of Hispanic men, Health Psychology, 11, pp. 300-306. Marks, G., Ruiz, M. S., Richardson, J. L. (1994) Anal intercourse and disclosure of HIV infection among seropositive gay and bisexual men, Journal of Acquired Immune Deficiency Syndrome, 7, pp. 866-869. Mason, H. R. C., Marks, G., Simoni, J. M., Ruiz, M. S., Richardson, J. L. (1995) Culturally sanctioned secrets? Latino men's nondisclosure of HIV infection to family, friends, and lovers, Health Psychology, 14, pp. 1-7. (See Chapter 3 of this volume.) Schnell, D. J., Higgins, D. L., Wilson, R. M., Goldbaum, G., Cohn, D. L, Wolitski, R. J. (1992) Men's disclosure of HIV tests results to male primary sex partners, American Journal of Public Health, 82, pp.1675-1676. Siegel, K. and Krauss, B. J. (1991) Living with HIV infection: adaptive tasks of seropositive gay men, Journal of Health and Social Behaviour, 32, pp. 17-32. Simoni, J. M., Mason, H. R. C., Marks, G., Ruiz, M. S., Richardson, J. L., Reed, D. (1995) Women's self-disclosure of HIV infection: rates, reasons, and reactions, Journal of Consulting and Clinical Psychology, 63, pp. 474-478. Stulberg, I. and Smith, M. (1988) Psychosocial impact of the AIDS epidemic on the lives of gay men, Social Work, 33, pp. 277-281. Tross, S. and Hirsch, D. A. (1988) Psychological distress and neuropsychological complications of HIV infection and AIDS, American Psychologist, 43, pp. 929-934. Wethington, E. and Kessler, R. C. (1986) Perceived support, received support, and adjustment to stressful life events, Journal of Health and Social Behavior, 27, pp. 78-89. Wills, T. A. (1991) Social support and interpersonal relationships, in: M. S. Clark (ed.) Prosocial Behavior (Newbury Park, Sage), pp. 265-289.

TWO

HIV-Positive Patient's Choice of a Significant Other to be Informed about the HIV-Test Result: Findings from an HIV/AIDS Counselling Programme in the Regional Hospitals of Arusha and Kilimanjaro, Tanzania Gro Therese Lie and Paul M. Biswalo

INTRODUCTION Most HIV-infected individuals in Tanzania are not aware they are infected. The majority of infected people discover their HIV-positive status at a late stage of disease. Many of these patients are diagnosed in the hospitals. The burden of getting to know about one's HIV-positive status is many-faceted. A person who learns he/she is HIV-infected, carrying a lethal virus, in addition becomes aware that he/she may be a threat to the lives of others since HIV is transmissible. Being identified as a carrier of the virus may also mean that others might hold this person responsible for spreading the disease. In a prior study in Tanzania we found that the subjects were more concerned with the social consequences of the disease than with the technical facts about AIDS, and that AIDS was associated with death, sex, misbehaviour (sin), blame, shame, rejection, and stigma. The importance of secrecy/confidentiality was stressed as essential to those who were worried about their infectious status (Lie and Biswalo, 1994b). Such secrecy may seem contradictory to reducing the risk of transmission. From a preventive point of view, it is important that the person who knows that he/she is infected shares this knowledge with his/her sexual partner(s). Such sharing of information is emotionally painful and may involve risk of being blamed and rejected. In addition, an AIDS patient will burden his/her family with material needs, and need for care, as well as grief. Most AIDS patients are young adults, many are parents of small children. The AIDS patients' family members need to be prepared for the challenges they will face, and plans must be made for the care of the future orphans. The AIDS patient may desire protection from the negative social impact, but he/she is also dependent on care and emotional, social and material support. Kiecolt-Glaser and Glaser (1988) state that epidemiological and immunological

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data suggest that both the quality of relationships and their disruptions are important for disease progress. AIDS is a stressful disease. A substantial body of research evidence from Western societies suggests that social support and control play a significant role in modifying levels of stress or health or the relationship between stress and health (Israel and Schurman, 1990). Emotional support involves the provision of empathy, love, trust, and caring and has a strong and consistent relationship to health status (Israel and Rounds, 1987). In cancer research the causal connection between social support and adjustment has been demonstrated in longitudinal studies, indicating that social support at the time of diagnosis is associated with less emotional distress and longer life (Taylor and Dakof, 1988). Based on such research evidence it should be clear that it is important for patients with chronic and lethal disease to have supportive confidants. This means that sharing the problems of the disease is important for the AIDS patient's coping process, but such sharing must be done in a way as to minimize the risk of rejection or other negative social consequences. From 1989, the Tanzanian Ministry of Health has recommended that HIVinfected persons or AIDS patients should be told their diagnosis and counselled. Counselling is primarily directed at meeting the psychosocial needs of the infected individual and those people the individual chooses to involve in the counselling process. Counselling may therefore need to be provided to immediate family, close friends and sexual partners. (Ministry of Health, 1989, p. 28.)

A key issue here is: Who does the infected individual choose to involve in the counselling process? The answers to this question are of importance for several reasons: The number of AIDS patients is increasing. It is unrealistic that hospital staff alone can deal with the changing needs of the AIDS patients during the process of disease development. The burden of care must be shared with others. The hospitals can never be a substitute for a caring social network. For material, social and emotional reasons, AIDS patients need social support. Not everyone will give such support and care. AIDS patients risk blame and rejection, and most patients fear rejection when faced with the fact that they are HIV-infected. The Tanzanian Ministry of Health and the World Health Organization stress the importance of a culturally-sensitive and appropriate counselling approach. Tanzania is a changing society with diverse ethnic groups. AIDS is a relatively new disease. Assumptions based on traditional views on patterns of support in case of disease may prove invalid in the context of AIDS. Knowledge generated about the infected individuals' patterns of choice of whom to inform about the HIV/AIDS diagnosis is of importance for improving the quality of existing HIV/AIDS counselling services and in training new counsellors.

16 G. T. LIE AND P. M. BISWALO

Such knowledge is also important for the process of involving partner(s) and others for prevention of further transmission. We are not familiar with any systematic research from East Africa on the issue of HIV-infected persons' choice of significant others to be informed about the HIV/ AIDS diagnosis. Such studies have been done in Western societies, but mainly among HIV-positive homosexuals. Studies among homosexuals can be illustrated by an American survey (Perry et al., 1990). Findings from the study showed that 68% of the HIV-infected individuals told at least one friend, and 35% told a family member, about their HIV status. In the same study, 90% did not try to warn former sexual partners, but 66% told their regular partners. These findings may not be typical of the pattern of choice in an East African context, mainly because the epidemic has spread through heterosexual behaviour in this region. Family life and social interaction patterns of young heterosexual adults in East Africa are different from those of homosexuals in Western countries. In Tanzania efforts are made to make HIV/AIDS counselling culturally sensitive and appropriate. 'Traditionally young people go to their babu (grandfather), bibi (grandmother), mjomba (uncle) and shangazi (aunt) for advice and support' (Joinet, 1988). This view on the importance of the elder generation/ extended family is also reflected by the Ministry of Health (1993a). If this view on the role of the elders in the Tanzanian society is valid in the social context of AIDS, the prediction would be that many HIV-positive or AIDS patients would choose a significant other among the elders in the family. There is, however, an important aspect of being HIV-infected which may influence the choice of a significant other, also from a traditional point of view, namely the fact that HIV is transmitted sexually. Caldwell et al. (1992) point to the difficulties of documenting historical sexual behaviour patterns through written sources as well as oral traditions: 'The failure of the oral tradition arises from the near-prohibition on the discussion of sexual activity between generations or between spouses, a situation attested to in all parts of the region' (p. 385). If such near-prohibition on discussion of sexuality is valid in Tanzania today, and if such near-prohibition includes HIV/AIDS-related problems, we would not expect HIV-infected or AIDS patients to choose elders, or their spouses for that matter, as significant others. Siegel and Krauss (1991), who have done their HIV/AIDS-related research in a Western context, argue that deciding whom to tell about one's HIV status is a first phase in the process of dealing with reactions to a stigmatizing disease. Such a decision entails efforts to protect oneself from discrimination, assess one's fear of rejection, and refuse pity from others while avoiding making them suffer or feel sorry. This argument could prove to be equally important in the Tanzanian context. In spite of cultural differences between Western countries and Tanzania, we have found (Lie and Biswalo, 1994a) that there is a stigma attached to AIDS. This phenomenon has also been addressed in other studies from Africa, including East Africa (Ankrah et al., 1992; Dautzenberg et al., 1992; Meursing and Sibindi,

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1992; McGrath et al, 1993; Buwalda et al, 1994). Whether the HIV/AIDSrelated stigma is linked to conceptualization of sexual morality, the breaking of other taboos or other aspects of transmissible lethal disease is another relevant problem that may have implications for how the individual HIV-infected person chooses to deal with his/her health-related problem. In traditional Tanzanian medicine, the concept of disease is always tied to social and symbolic causes (Swantz, 1990), but in a rapidly-changing society traditional and 'modern' explanations for diseases may co-exist. Linking certain sexual behaviours to a sexual moral domain, regardless of whether such behaviour traditionally has been inside or outside the moral realm in the traditional societies, is typical of the dominant religions in Tanzania today. There is thus a religious link between premarital/extra-marital sex and the concept of sin. If conceptualization of morality and moral development is relevant for the choice of significant other, theories of moral development could be relevant for undertanding AIDS patients' choice of significant others. Piaget's contributions (1932) represent a classical theoretical and empirical approach to moral development. Piaget claimed that in authoritarian families or societies, children and young people will look to their peer groups to develop autonomous morals, instead of adhering to the older generation's rules and regulations. The essence of autonomous morals is mutuality, a phenomenon that predominantly develops among peers in an authoritarian structure. Tanzanians show great respect for elders and do not openly oppose them. The generation hierarchy is obvious. Based on Piaget's theories one should predict that HIV-infected individuals would choose significant others among their peers. In this study we will not deal with the roots of AIDS-related stigma, but simply state that we think stigma and the link between sexuality and lethal disease will have an effect on HIV-infected persons' choice of significant others to be informed about their disease, and that such a connection will mean that the choice of significant others probably will constitute a different pattern of supportand advice-seeking than for less sensitive problems. METHODS The Counselling Programme Fifteen health-workers from Mount Meru and Mawenzi regional hospitals were trained in HIV/AIDS counselling. The selected health-workers represent different tribes in the area, in terms of gender, religious adherence and age. Training was based on research and theories regarding essential qualities and skills in counselling, including research in the local area, and HIV/AIDS-relevant facts. Several educational approaches were utilized in the formal training and, in addition to the formal training, counsellors were supervised weekly for 2 years (Lie and Biswalo, 1994a, 1994b). For research purposes, counsellors were also trained as research assistants. Routines in the counselling programme include:

18

G. T. LIE AND P. M. BISWALO

(1) systematic counselling (pre-test counselling; post-test counselling/conveying test results; and follow-up counselling to a defined minimum standard); (2) registration of counselling experiences in confidential registration forms and a separate filing system; (3) securing confidentiality/respect for the client/patient by using codes instead of names on registration forms and specimens; keeping all confidential information locked away; finding undisturbed places for counselling to minimize the risk of eavesdropping; (4) feedback routines that counsellors may learn from through self-evaluation techniques; an evaluation column in the counselling registration form; supervisory meetings; feedback based on collected data. According to directives from the Ministry of Health, counselling should be given only if the clinician has a reasonable suspicion of HIV-infection. The routines introduced in the two hospitals, therefore, meant that people should not be tested unless there were reasons to suspect HIV-infection. In such cases individuals were referred to pre-test counselling. Efforts were taken to match clients and counsellors with regard to ethnic background, religious adherence, gender and other relevant factors, if circumstance allowed. Clients were counselled in Swahili or in their own tribal language. If children were suspected to be infected, one or both parents were given pretest counselling. An overall objective for the counselling intervention and research programme was to generate knowledge about individuals suspected to be HIV-infected, about HIV-positive persons and about critical factors and steps in their coping process. Generating such knowledge would be of importance for improving the quality of HIV/AIDS counselling service rendered. The data presented in this paper focus on HIV/AIDS-counselled clients in the two regional hospitals from the period 1990 to 1992. Data Collection Procedures The two regional hospitals introduced the HIV/AIDS counselling programme in June 1990 (Arusha) and in June 1991 (Kilimanjaro). During the period June 1990 to June 1992, 1,194 persons, 47% males and 53% females, received pre-test counselling in the regional hospitals of Arusha and Kilimanjaro. These figures include all persons suspected of infection and who turned to the hospitals from the time when the counselling programme was introduced until the end of June 1992. During pre-test counselling, clients are prepared for the possibility that they might be infected with the virus causing AIDS and the meaning of the test is explained. They are also carefully informed about the confidentiality routines and then asked to give informed consent to be tested. The issue of sharing the test result with someone close was brought up in the pre-test counselling session. The clients were asked to think through how different persons in their network

CHOICE OF OTHER TO BE INFORMED ABOUT TEST RESULT

19

might react if their test results showed HIV-infection. Clients were asked to name someone they felt they trusted who would support them in the process of coping with the disease. The person chosen in this context is called 'the significant other'. The significant other is often the one to help the infected person share the news of the HIV infection with other people who, for preventive and other reasons, should be informed. The Subjects Of 1,194 persons subjected to pre-test counselling, 46.6% were males and 53.4% were females. The majority of the pre-test counselling clients (73%) were between 15 and 40 years of age. The mean age was 27.5 years. Females were generally younger than the males. Lutherans, Roman Catholics and Muslims were approximately equally represented in the group of clients (28.7%, 40.6%, 27.6% respectively, and 3.1% other religions). Of all pre-test counselled clients 95% (1,133 persons) consented to testing. HIV-test results were available for 1,108 persons of whom 38% received HIV-negative test results (428 persons), while 62% (684 persons) received HIV-positive results. Children below the age of 16 are excluded in the following presentation because their parents were the ones who decided for them. Not all counselled clients decided in the pre-test counselling session whom they would choose as their significant other. Many clients needed time to consider this choice. The question was raised again in the post-test session where the test results were conveyed. If clients were HIV-negative the issue was not pursued. For HIV-negative clients, therefore, there is some missing information concerning the choice of significant others. Where such information exists, the data show that the patterns of choice of significant others by HIV-negative persons do not differ significantly from those of HIV-positive persons. The focus of interest in this article is HIV-positive persons' choice of significant others to be informed about the diagnosis, since such a choice is of importance both for coping with the disease and for preventive reasons. The material included 611 HIV-positive persons aged 16 and above. Among these HIV-positive persons, 57% were females and 43% males. Eighty-three per cent of these HIV-positive clients were between 20 and 40 years of age. The mean age for the HIV-positive females was 29 years, mean age for the males 33 years. Of the HIV-positive subjects in our study, 49.9% came from urban areas (Arusha and Moshi), 21.1% came from semi-urban areas (mainly from villages along the main roads), and 28.8% came from rural areas. The majority of the HIV-infected persons had dependent children. The mean number of dependent children for HIV-positive men was 1.8, while for HIV-positive women it was 2.4. Analyses Data were analysed with quantitative as well as qualitative approaches. The counselling registration forms had both pre-coded response categories and open-

20

G. T. LIE AND P. M. BISWALO

Table 2.1 Choice of a significant other with whom to share the diagnosis among HIVpositive persons by gender, age 16 and above % Male (n = 263)

% Female (n = 348)

% Total (n = 606)

None Husband Wife Brother Sister Father Mother Uncle Aunt Male friend Female friend Son Daughter Brother-in-law Sister-in-law Other relative Other non-relative

16.1 14.2 34.5 4.2 9.2 4.2 1.9 0.8 5.0 2.3 1.1 0.4 1.5 0.4 2.7 1.5

12.8 15.4 9.3 18.8 3.2 22.3 0.6 3.5 2.3 2.9 1.2 2.9 0.6 1.2 2.0 0.9

14.2 8.7 6.3 20.1 12.5 5.8 14.5 1.2 2.3 3.5 2.6 1.2 1.8 1.0 0.8 2.3 1.2

Total

100%

100%

100%

Missing cases: 5

ended questions. The forms also included space for narratives and descriptions which helped us interpret and understand the patterns of response analysed quantitatively (Ragin, 1989; Denzin and Lincoln, 1994). The results presented are based on statistical analyses of categorized data supplemented by analyses of narratives in the registration forms.

RESULTS HIV-Positive Persons' Choice of Significant Other Eighty-six per cent of the HIV-positive persons aged 16 and above did choose a person to confide in, while 14% could not think of anyone they would turn to or inform (Table 2.1). These 14% wanted their diagnosis to be kept secret. Some changed their minds at a later stage in the counselling process and chose their significant others. The majority of the counselled persons chose a significant other of the same gender as themselves. Among the HIV-positive men 67.3% chose men as significant others, and 61.6% of the HIV-positive women chose women as their significant others. The association between the gender of the patient and the gender of the significant other is statistically significant (P < 0.001). Married or cohabiting persons usually did not choose their partners as their significant others. Among married/cohabiting people, regardless of gender,

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21

Table 2.2 Choice of significant other (same or parent generation) by gender among HIV-positive persons, age 16 and above HIV-positive client's gender

Significant other's generation Same generation Parent generation Total

Male n(%]

Female n(%)

Total n(%]

163(79.5) 42 (20.5)

176(62.2) 107(37.8)

339 (69.5) 149(30.5)

205(100.0)

283(100.0)

488(100.0)

X2= 16.82,d.f. = \,P< 0.001

approximately one-third chose their partners as their significant others. The tendency is the same for HIV-positive men as for HIV-positive women. Clients were family-oriented in their selection of significant others. Ninetythree per cent of the HIV-positive persons chose family members or relatives to confide in and share their diagnosis with. Some chose close male/female friends (6%) and a few chose other non-relatives (1%) as significant others. Among the family members chosen, 90% were close family members as compared to extended family members. Brothers, sisters and mothers were the predominant family members selected. We found that 69.5% of the HIV-positive persons chose someone of their own generation as compared to someone of the parents' or grandparents' generation. There was, however, a gender difference in the selection of generation. Among men, 20.5% chose a person of the parents' generation as the significant other, whereas among women the corresponding figure was 37.8% (Table 2.2). In the multiple logistic regression analysis, age, gender, marital status and number of dependent children were chosen as predictors of choice of generation of the significant other. The odds of choosing the parents' generation decreased the older the respondent was, even when other variables like gender, marital status and number of dependent children were controlled for. Being female increased the chance of choosing the parents' generation, also when the other variables were controlled for. Married people had a reduced probability for choosing the parents' generation, also when controlling the age, gender and number of dependent children. Having dependent children had no significant connection to the choice of generation when controlling for age, gender and marital status (Table 2.3). Religious adherence did not have any significant association with the pattern of choice of significant other.

DISCUSSION The Representativeness of the Sample

Not all persons concerned about HIV/AIDS-related problems, or with signs and symptoms that may give health professionals reasons to suspect HIV infection,

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G. T. LIE AND P. M. BISWALO

Table 2.3 HIV-positive persons' choice of parent generation versus own generation as significant other by selected predictors. Multiple logistic regression analysis (own generation = 0, parent or grandparent generation = 1) Variable Age (years) Gender (male = 0, female = 1 ) Single/married (single = 0, married/cohabiting = 1 ) Children (number of)

Odds ratios bivariate

P<

Odds ratios adjusted

P<

0.90 2.36 0.49 0.79

0.001 0.001 0.001 0.001

0.92 1.99 0.61 0.93

0.001 0.01 0.05 n.s.

would turn to hospitals in Tanzania. Many probably seek other options, e.g. traditional healers. There may be a difference between urban and rural areas, due to differences in accessibility of health care facilities as well as differences in tradition. The two regional hospitals included in our study are both urban. The total sample of subjects from the regional hospitals had demographic characteristics comparable to those found in epidemiological surveys conducted in Tanzania (Ministry of Health, 1993b), and we therefore assume that our sample is congruent. Informed Consent to be Tested A very high number of individuals (95%) gave informed consent to be tested. This high level is believed to be due to thorough pre-test counselling during which confidentiality routines were carefully explained to all clients. Knowledge of HIV/AIDS was explored, and tailored health education provided. Concerns connected to possible infectious status were also explored and reassurance given. The test procedures and the meaning of an HIV test were explained to the clients. The clients' understanding of information given was checked. Since the vast majority of clients wanted to maintain a relationship with their counsellors, we have no reason to believe that clients felt they were forced to be tested. Understanding the Choice of Significant Others HIV-positive persons' choice of significant others reflects, according to our interpretation of the data, the sensitivity of AIDS-related issues: the direct and indirect importance of gender, the existential importance of belonging and being morally accepted, and the relative importance of close family as emotional, social and material support in the Tanzanian context. One could argue that this is evident for most people. However, the data give us cultural information which has implications beyond the dominant existing practice of dealing with AIDS and HIV prevention in the Tanzanian health care system today. The results also raise questions about some dominant Tanzanian views on the role of the elders and the extended family in the context of the AIDS era. THOSE WHO CHOOSE NO-ONE TO CONFIDE IN A minority of those testing HIV-positive (14%) can think of no one they want to inform about their AIDS diagnosis. This is generally not because they are socially

CHOICE OF OTHER TO BE INFORMED ABOUT TEST RESULT

23

lonely and alienated, although social marginalization is a relevant issue for a few, e.g. some young substance abusers ('bhang-smokers') and some prostitutes. A more prevailing picture is that the 'non-informers' feel that they do not deserve the shame and blame associated with the disease. Some of these clients do fear, and maybe rightly so, that they will be rejected. However, others want to keep the secret in the belief that they should not give their family the burden of knowing that they will die from a stigmatized disease. Some, however, want to postpone the sharing until they are weaker. Those who live with the fear of rejection are living under constant psychological stress, a condition which may contribute to the deterioration of their health. Those who want to hide their disease from the closest family may, whether they intend it or not, put others in risk situations for HIV transmission. Some may also develop defence mechanisms such as denial reactions. Such reactions may endanger their own health as well as the health of others. Whether the patients do not dare to include others, or want to protect others from the burden of the news, they will still need emotional and social support to cope with their AIDS-related problems. Counsellors may in such cases be their only channel for social support. Those who develop denial reactions are important to follow up for HIV-preventive reasons. Thus, those who can think of no-one with whom to share their HIV/AIDS diagnosis present a major challenge to the counsellors, ethically as well as in follow-up counselling. THE ROLE OF THE SPOUSE OR SEX-PARTNER

From a prevention point of view, it is interesting and disturbing to note that the sex-partner/spouse is not the first one to be informed. An exception here is when the partner is already identified as HIV-positive. Sharing the news with the sexpartner may be a critical and painful step in the process of living constructively with AIDS, including taking HIV-preventive precautions. Most infected persons feel that they need time to prepare themselves mentally, and they need the emotional support and care of others to share the bad news with the partner. The difficulty with sharing the news with the partner may, however, also be interpreted in the context of traditional taboos against discussing matters relating to sex even among married people, as pointed out by Caldwell et al. (1992) and also mentioned in the Tanzanian guidelines for counsellors. In this connection the traditional taboos may be used as a self-defence mechanism, 'permitting' the HIV-infected not to share the diagnosis with the spouse. The existence of traditional taboos may also make the preventive necessity of sharing the diagnosis even more difficult and emotionally taxing. THE GENDER-SPECIFIC CHOICE

Tanzania is by and large a patrilineal and gender-segregated society, and it is therefore not surprising to find that men chose men and women chose women as significant others. The association between the lethal disease and sexuality would probably also strengthen the possibility of choosing someone of one's own gender for emotional support.

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G. T. LIE AND P. M. BISWALO

CHOOSING SOMEONE FROM ONE'S OWN GENERATION If the findings related to the gender-specific choice of significant others reflect a prevailing and dominant traditional cultural trend, the choice of generation certainly does not reflect what could be predicted based on what is assumed in the governmental guidelines (Ministry of Health, 1993a). Seventy per cent of the HIV-positive persons chose someone of their own generation as compared to someone of the parents' or grandparents' generation. By cross-checking with other information in the data, we have ruled out the explanation that migration and loss of contact with the older generation can account for not choosing the elders. Almost all the counselled clients have access to their older family members. The data do, however, fit the observation by Caldwell et al. (1992) of the near-prohibition on the discussion of sexuality between generations. AIDS IN THE MORAL CONTEXT

It may be that the reasons for not choosing to involve the elders is not simply the historical tradition of near-prohibition on discussion of sexuality between generations. Since most HIV-infected persons have been exposed to a societal interpretation of AIDS as a sexually transmitted disease associated with misbehaviour, sin and shame, HIV-infected people would probably avoid the risk of a negative moral judgement. The fear of being morally degraded or bringing shame to the elders may contribute to choosing emotionally 'safer' options in whom to confide. The data fit well with the classical theoretical and empirical works on moral development by Piaget (1932). Given that HIV infection and AIDS are interpreted in a moral context, Piaget's theories should be highly relevant. A different interpretation might simply be that in a rapidly changing society most urban HIV-infected persons are 'modernized' in the sense that they no longer feel the same ties to the elders, and that the only natural choice for them would, for this simple reason, be to confide in someone equally 'modernized' who can identify with them. GENDER DIFFERENCES IN THE CHOICE AMONG THE ELDER GENERATION AS SIGNIFICANT OTHER

The findings concerning choice of generation is, however, not equally clear for both genders. When members of the older generation were chosen as significant others, it was predominantly done by females. This could of course reflect the fact that the females on average are younger than the males, that females are more dependent on their parents' generation, or that in an authority structure females adhere to the traditional cultural norms to a greater extent than the more 'modernized' men. In their daily activities, females spend more time in the home area and with other family members of all generations than do young men. The females also have less freedom of movement and initiative (especially in sexual behaviour) than men. Again it seems reasonable to interpret the findings in the context of Piaget's theory of morality development. Piaget underlines the

CHOICE OF OTHER TO BE INFORMED ABOUT TEST RESULT

25

importance of emotional support in moral development. Traditionally, the authority is exercised by the men in a predominantly patrilineal society, while women have a much more caring and emotionally-supporting role. Most of the females who chose the elder generation would choose their mother, or, in some cases, their aunt. This also reflects the statistically significant gender trend in the presented data. However, looking into the qualitative information given in the counselling sessions, young women would give reasons like: 'My mother always cares for me, no matter what.' The females concerned may therefore feel that some chosen female elders will be supportive and non-judgemental. THE IMPORTANCE OF CLOSE FAMILY MEMBERS AS SIGNIFICANT OTHERS It was very rare for the HIV-infected individuals or AIDS patients to choose someone outside the family when deciding on a confidant. But among the family members chosen, 90% were close family as compared to exended family. The family plays a critical role in the lives of most Tanzanians, emotionally as well as materially. Belonging within the family is of utmost importance for the AIDS patient in a very profound sense of the meaning of the term 'belonging'. The fear of rejection is a fear that most patients have to overcome. Choosing a close family member, preferably of one's own gender and of one's own generation, seems to be a way of ensuring empathy, but in the context of soliciting support in the process of securing continued belonging in the family. Based on a comprehensive interpretation of our data, we would agree with Siegel and Krauss (1991) that deciding whom to tell about one's HIV status is a first phase in the process of dealing with reactions to a stigmatizing disease. We think such a view is equally valid in the Tanzanian context of AIDS as in a Western society, despite other differences. IMPLICATIONS OF THE FINDINGS FOR THE HIV/AIDS COUNSELLING SERVICE All HIV/AIDS counselling services must address the psycho-social needs of individuals worried about infection or knowing that they are infected. Sharing the knowledge of being infected is important for the infected person's coping as well as for prevention of further transmission. Counsellors should take time and show sensitivity in exploring who, in the patient's network, is trusted by the patient, who will be able to deal with the sensitive and painful information and who will be able to encourage and support the infected person in his/her process of further sharing, coping and risk prevention activities. Health workers' most important allies in dealing with coping and prevention are the patient and his/ her significant other. The significant other knows the patient and usually his/her spouse or sex partner(s), as well as other family members, better than the health worker does. This is why it is important to include the significant other in the counselling process. Sharing the diagnosis with those who should know for preventive reasons may not have the intended effect if there is little or no

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G. T. LIE AND P. M. BISWALO

sensitivity to the fears of blame and rejection that many patients experience. The health authorities' current definitions of cultural 'truths' must not be authorized as moral imperatives for whom to inform in the context of AIDS. Exploring the situation for each individual infected person is necessary. Taking preventive measures is a process in which the infected person and those trusted by him/her play the crucial role. The choice of a significant other in the era of AIDS clearly follows a logic which differs from the traditional Tanzanian norms for seeking advice and support.

REFERENCES Ankrah, E. M. et al. (1992) Stress and coping among rural families in Uganda. Paper presented at the VIII International Conference on AIDS/III STD World Congress, Amsterdam. Buwalda, P. et al. (1994) Evaluation of a home-care/counselling AIDS programme in Kgatleng District, Botswana. AIDS Care, 6, pp. 153-160. Caldwell, J. C. et al. (1992) The family and sexual networking in sub-Saharan Africa: historical regional differences and present-day implications. Population Studies, 46, pp. 385-410. Dautzenberg, M. et al. (1992) Coping behaviour of AIDS patients and caretakers in Tanzania. Paper presented at the VIII International Conference on AIDS/III STD World Congress, Amsterdam. Denzin, N. K. and Lincoln, Y. S. (1994) Handbook of Qualitative Research (London: Sage). Israel, B. A. and Rounds, K. A. (1987) Social networks and social support: a synthesis for health educators. Advances in Health Education and Promotion, 2, pp. 311-351. Israel, B. A. and Schurman, S. J. (1990) Social support, control, and the stress process, in: K. Glanz, F. M. Lewis and B. K. Rimer (eds), Health Behavior and Health Education. Theory, Research and Practice (San Francisco: Jossey-Bass Publishers), pp. 187-215. Joinet, B. (1988) AIDS challenges the state, the party, the churches. A Letter to My Superiors, 13, p. 9 (Dar es Salaam, Tanzania). Kiecolt-Glaser, J. K. and Glaser, R. (1988) Psychological influences on immunity: implications for AIDS. American Psychologist, 43, pp. 892-898. Lie, G. T. and Biswalo, P. M. (1994a) Perceptions of the appropriate HIV/AIDS counsellor in Arusha and Kilimanjaro regions of Tanzania: implications for hospital counselling. AIDS Care, 6, pp. 139-151. Lie, G. T. and Biswalo, P. M. (1994b) Counselling Service within the Governmental Health Care System of Kilimanjaro and Arusha. Action Research to Improve the Quality of HIV/AIDS Counselling. A Summary Report of Experiences and Findings (Moshi, Tanzania: MUTAN). McGrath J. W. et al. (1993) AIDS and the urban family: its impact in Kampala, Uganda. AIDS Care, 5, pp. 55-71. Meursing, K. and Sibindi, F. (1992) Coping with HIV: a follow-up study of families in Bulawayo. Paper presented at the VIII International Conference on AIDS/III STD World Congress, Amsterdam. Ministry of Health (1989) National AIDS Control Programme: Manual of Clinical Management of HIV Disease and AIDS (Dar es Salaam, Tanzania: MOH, NACP), p. 28. Ministry of Health (1993a) A Guideline for AIDS Counsellors in Tanzania (Dar es Salaam, Tanzania: MOH, NACP & AMREF), pp. 40-43. Ministry of Health (1993b) National AIDS Control Programme: Epidemiology Unit (Dar es Salaam, Tanzania: MOH, NACP).

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Perry, S. et al. (1990) Voluntarily informing others of HIV test results: patterns of notification by infected gay men. Hospital and Community Psychiatry, 41, pp. 549-551. Piaget, J. (1932) The Moral Judgement of the Child (New York: Free Press). Ragin, C. C. (1989) The Comparative Method. Moving beyond Qualitative and Quantitative Strategies (Berkeley: University of California Press). Siegel, K. and Krauss, B. (1991) Living with HIV infection: adaptive tasks of seropositive gay men. Journal of Health and Social Behaviour, 32, pp. 17-32. Swantz, L. (1990) The Medicine Man among the Zaramo of Dar es Salaam (Uppsala: Scandinavian Institute of Africa Studies). Taylor, S. E. and Dakof, G. A. (1988) Social support and the cancer patient, in: S. Spacapan and S. Oskamp (eds), The Social Psychology of Health (Newbury Park: Sage), pp. 95-116.

THREE Culturally Sanctioned Secrets? Latino Men's Nondisclosure of HIV Infection to Family, Friends, and Lovers Hyacinth R. C. Mason, Gary Marks, Jane M. Simoni, Monica S. Ruiz and Jean L. Richardson

Accompanying the second decade of the HIV pandemic are continuing concerns about social, psychological, and behavioral aspects of the disease. One particular concern is the decision of persons with HIV to inform others, especially significant others (e.g., parents, siblings, friends, and lovers), about their diagnosis. On one hand, the persistent stigma associated with HIV and AIDS in our society (Herek and Glunt, 1988; Kegeles, Coates, Christopher and Lazarus, 1989; Herek and Capitano, 1993) is likely to inhibit disclosure. Indeed, keeping one's diagnosis secret may prevent potentially negative social, personal, and material consequences. On the other hand, withholding an HIV diagnosis may decrease opportunities for social support, which may help buffer the effects of anxiety and stress (Cohen and Wills, 1985; Wethington and Kessler, 1986; Cohen, 1988; Siegel and Krauss, 1991). For example, satisfaction with social support has been found to lessen the effects of HIV-related physical symptoms on depression symptomatology (Hays et al., 1992). Furthermore, persons with HIV who are integrated in social networks have higher levels of psychological well-being than those who are not (Kelly et al., 1993). A body of literature on self-disclosure of HIV infection is developing (e.g., Chervenak and Weiss, 1989; Stempel et al., 1989; Marks et al., 1991; Marks et al., 1992; Schnell et al., 1992; Hays et al., 1993; Simoni et al., 1995). Findings indicate that seropositive men and women are more likely to inform intimate lovers, spouses and close friends than to tell casual sexual partners, immediate family members or co-workers. Gay and bisexual men with HIV are more inclined to reveal their serostatus to gay or bisexual others than to heterosexuals, and they are more likely to inform those who are aware of their sexual orientation. Additionally, disclosure increases with the severity of one's disease, indepen-

CULTURALLY SANCTIONED SECRETS?

29

dently of length of time since testing seropositive. Most of the findings are consistent with a reasoned action perspective (Fishbein and Ajzen, 1975), which emphasizes that decisions about disclosure are influenced by a person's perception of the social, psychologial and material consequences of informing an other. One neglected area of research is ethnic differences in self-disclosure of HIV. This issue merits attention because the HIV pandemic in the United States is disproportionately represented and is growing at a faster rate in ethnic minority than majority populations (Centers for Disease Control and Prevention, 1993). Latinos represent approximately 9% of the US population, according to the 1990 census, but constitute 17% of the reported adult and adolescent AIDS cases (Bakeman et al., 1987; Selik et al., 1988; Centers for Disease Control and Prevention, 1993). The AIDS incidence rate among Latino men (69.9 per 100,000) is 2V2 times higher than among non-Latino white men (hereinafter referred to as white; 27.6 per 100,000) (Diaz et al., 1993). Indeed, the AIDS incidence rate for all Latinos increased 13.5% between 1989 and 1990, the highest proportionate increase of any US ethnic group (Centers for Disease Control, 1991). An examination of self-disclosure among Latino and white men must be set within the context of cultural values and attitudes that differentiate the two ethnic groups. Individualism, a central value in the United States, underscores independence and competition, as well as setting and accomplishing personal goals (Triandis, 1989). In contrast, most Latino cultures value collectivism, which emphasizes close, nurturing, and supportive interpersonal relationships (Marin, 1989; Marin and Marin, 1991; Yep, 1992). Specifically, two aspects of collectivism - namely, familism and simpatia - may play a role in the decision to self-disclose. Familism promotes identification with and attachment to one's family, strong feelings of familial loyalty, and the obligation to support the family emotionally and materially (Mindel, 1980; Sabogal et al, 1987; Marin, 1989; Marin and Marin, 1991). Simpatia is a cultural script that mandates politeness, respect, and harmonious interpersonal relations, and has been shown to be stronger among Latinos than Anglos (Triandis et al., 1984; Marin, 1989). These collective tendencies among Latinos appear to decrease as they adapt to the cultural practices of US society (Mindel, 1980; Domino and Acosta, 1987; Sabogal et al., 1987). Seropositive Latinos may desire to share their HIV serostatus with significant others as part of a sense of connectedness with family and friends. However, the strong antigay attitudes of some Latino cultures (Carrier, 1989; Marin, 1989; Singer et al., 1990; Diaz, 1993), as well as the association between homosexual behavior and HIV and AIDS, may lead HIV-positive men to withhold their serostatus in order to maintain harmony, spare loved ones emotional pain, and avoid disclosing their sexual orientation or being assumed to be gay or bisexual. The results of two recent studies suggest there are ethnic differences in HIV disclosure. Rates of disclosure to family, friends, and lovers were higher in a sample of 163 primarily white HIV-positive gay men living in San Francisco

30

H. R. C. MASON et al.

(disclosure rates ranged from 40%-98%) (Hays et al., 1993) than in a sample of 101 mostly gay seropositive Latino men from Los Angeles (disclosure rates ranged from 8%-83%) (Marks et al., 1992). However, these variations may reflect sociodemographic or medical differences between the two groups rather than ethnicity-related factors. We tested several hypotheses regarding differences in disclosure between Latino and white men with HIV. First, after statistically controlling for sociodemographic and medical variables, we expected seropositive Latino men to be less likely than their white counterparts to disclose their diagnosis to family members, friends, and lovers. Second, we predicted that among gay and bisexual men, Latinos would be less likely than whites to disclose their sexual orientation to family members. Third, we expected both Latino and white men who had disclosed their HIV infection to a particular person to be more likely to have disclosed their sexual orientation to that person. Fourth, we anticipated lower rates of both types of disclosures among less acculturated Latinos, who, we presumed, would be more strongly attached to traditional cultural values than their more acculturated counterparts. Furthermore, we examined the subjective reasons persons expressed for disclosing or not disclosing their HIV infection to specific persons. Because of the stigma attached to HIV and AIDS, seropositive men may have self-focused reasons for withholding their diagnosis, such as wanting to avoid rejection or other negative consequences. However, nondisclosure also may reflect otherfocused reasons, such as protecting others from worry or suffering (Hays et al., 1993). Because of the high value placed on collectivism among Latino groups, we hypothesized that Latinos would be more inclined than whites to express otherfocused reasons for keeping their HIV infection secret from significant others, especially family members. METHOD Sample Recruitment

The study was conducted at two HIV outpatient clinics in Los Angeles between 1991 and 1992. One clinic was part of a large HMO, and the other was part of a large public medical center. Bilingual research assistants stationed at each clinic for the duration of the study were trained to implement a standardized set of selection and recruitment procedures. They randomly selected one primary and two alternate prospective participants for every 1-hour block of time from each clinic's daily appointment schedule. Men and women were sampled without regard to ethnicity, but only Latino and white men were included in the current analyses. The participants were recruited in the waiting area of each clinic. The alternates were approached if the primary patient did not keep the appointment or was ineligible for participation. Only three primary or alternate patients failed

CULTURALLY SANCTIONED SECRETS? 31

to meet the following eligibility criteria: (a) HIV seropositive for more than two months, (b) English- or Spanish-speaking, (c) at least 18 years of age, and (d) judged by medical providers at the clinics to be physically and mentally able to provide reliable questionnaire responses. Of the eligible men approached, 82% at the HMO clinic and 96% at the public clinic agreed to participate. Questionnaire Administration The questionnaire was written in English, translated into Spanish, and then independently back-translated to identify ambiguity of meaning. The participants were given the choice of using an English or Spanish version of the questionnaire. After explaining the purpose of the study and obtaining informed consent, the research assistant reviewed the questionnaire with participants before they completed it independently. The participants created identifiers by randomly choosing five numbers from 0 to 9. The research assistants recorded the codes on a master list used to link questionnaires with medical information abstracted from medical charts. All participants sealed their completed questionnaire in an envelope and deposited it into a collection box. Measures DISCLOSURE OF HIV INFECTION TO SIGNIFICANT OTHERS

The men indicated (yes or no) whether they had disclosed their HIV infection to the following persons: mother, father, sister, brother, closest friend (either man or woman) and intimate lover. If the target was not applicable (e.g., no intimate lover or a parent was deceased before the participant knew he was HIV seropositive), the participant was excluded from the statistical analysis of that specific target. We created an overall disclosure index for each participant by calculating the percentage of applicable targets informed. OPEN-ENDED REASONS FOR DISCLOSING OR NOT DISCLOSING HIV INFECTION

The men wrote out their reasons for disclosing or not disclosing their serostatus to their mother, father, closest friend, and lover. To analyze these data, we created a few broad but meaningful a priori categories to capture most of the stated reasons with an acceptable level of interrater reliability (Krippendorff, 1980). The categories were: self-focused (avoiding negative consequences or enhancing positive outcomes for oneself), other-focused (avoiding negative consequences or enhancing positive outcomes for others), quality of the interpersonal relationship, medical-related, tested at the same time, other, and ambiguous. The stated reasons were categorized on a target-by-target basis by two independent raters, with disagreements between them categorized by a third independent rater. If the third rater's classification corresponded to either of the others' classifications, then the response was recategorized as an agreement and assigned to the appropriate category. We adjusted for the probability that the

32

H. R. C. MASON et al.

third rater would choose the same category as one of the other two raters by chance. For example, with seven categories, two of every seven recategorized agreements were randomly reclassified as disagreements. Adjusted interrater agreement ranged from 82% to 93%, and adjusted kappas ranged from 0.76 to 0.92 (for all kappas P < 0.001) (Cohen, 1960). ACCULTURATION VARIABLES

Three acculturation variables were measured among Latinos: language of the questionnaire chosen (English or Spanish), nativity (US- or foreign-born), and number of years immigrants had been living in the United States. These indicators of acculturation have been used in prior research on Latino mental health status, and familial values (e.g., Vega et al., 1985; Sabogal et al., 1987; Golding and Karno, 1988; Kaplan and Marks, 1990; Markides et al., 1990). DISTANCE FROM PARENTS

As a proxy measure of the accessibility to the parents for disclosure, the participants indicated the number of miles they lived from their mother and father. For use in logistic regression analyses, the data for each parent were categorized to indicate participants who lived (a) with or within 100 miles of a parent, (b) 101-2,000 miles away, or (c) more than 2,000 miles away. Each of these three groups contained an approximately equal number of participants. TARGET'S AWARENESS OF PARTICIPANT'S SEXUAL ORIENTATION

Gay and bisexual men indicated whether their mother, father, closest friend, and lover were aware of their sexual orientation (yes or no or don't know). SOCIODEMOGRAPHIC VARIABLES

Using standard response formats, the participants indicated their ethnicity, age, education, country of origin, and employment status. Sexual orientation was assessed by asking 'With whom do you usually had sex?' Those who responded men only were grouped as gay, those who responded mostly men, men and women equally, or mostly women, were grouped as bisexual, and those who responded women only were grouped as heterosexual. Because there were no significant differences between gay and bisexual men relevant to any of our hypotheses, these two groups were pooled in the analyses. MEDICAL VARIABLES

The participants indicated how long ago they found out they were HIV-positive (2-4 months, 5-12 months, 13-24 months, 25-48 months, or more than 48 months) and the severity of their infection as indicated by their current HIV diagnostic category (asymptomatic or minimal symptoms, symptomatic, or AIDS as defined by the Centers for Disease Control (1987) case definition). In addition, research assistants abstracted diagnostic information from the participants' medical charts. Analyses with self-reported categories produced results virtually

CULTURALLY SANCTIONED SECRETS?

33

identical to those with categories derived from medical chart data. The findings reported are based on self-reported diagnostic groups.

RESULTS Sample A total of 413 white and Latino men enrolled in the study. The 398 men (96.4%) with complete data on the sociodemographic and medical variables constituted the analytic sample. There were several statistically significant demographic differences among the 192 Latino and 206 white men in our sample. Approximately two-thirds of the Latinos were sampled at the public clinic, and twothirds of the whites were sampled at the HMO clinic. In comparison with their white counterparts, Latinos were younger (35.5 versus 39.6 years), less likely to be employed (35.4% versus 55.3%), less educated (47.9% of Latinos and 9.7% of whites had less than a high school diploma), less likely to identify as exclusively gay (57.3% versus 72.8%), and less likely to be born in the United States (30.7% versus 92.2%). Seventy-four percent of the foreign-born Latino men were born in Mexico. The severity of the disease and the time since initial seropositive diagnosis were comparable between ethnic groups. Overall, 57.0% had minimal symptoms, and 58.0% had been seropositive over 2 years. Disclosure of HIV Infection Univariate analysis of variance (ANOVA) for unbalanced designs indicated that white men informed a significantly larger mean percentage of applicable targets (of six possible) than did Latino men (68.5% versus 52.2%), F (1,396) = 24.53, P < 0.001. As expected, a greater percentage of Latinos than of whites (12.0% versus 3.9%) reported that they had informed none of the targets about their HIV infection, whereas a greater percentage of whites than of Latinos (38.8% versus 24.5%) informed all applicable targets. There were no differences in the mean numbers of applicable targets for Latinos (4.6) and whites (4.4). To impose statistical control on potential confounding factors, we conducted a simultaneous least squares multiple regression analysis on the percentage of applicable targets informed; the analysis was controlled for age, clinic site, education, employment status, sexual orientation (gay or bisexual versus heterosexual), time since testing seropositive, and severity of HIV infection. The results indicated that whites disclosed their HIV status to a greater percentage of targets than Latinos (/? = 0.16, P < 0.01). Disclosure related positively to education (/3 = 0.16, P < 0.01), severity of disease (P = 0.20, P < 0.001) and time since testing HIV seropositive ((3 = 0.18, P < 0.001). Age, site, employment, and sexual orientation were not independently related to disclosure. To examine the hypothesized association between acculturation and disclosure, we divided the sample into three ethnic and language groups (Latino men who

34

H. R. C. MASON et al.

Table 3.1 Disclosure of HIV infection by ethnic and language group Latino men Spanish-speaking Target Mother Father Sister Brother Friend Intimate lover

English-speaking

White men

%

n/N

%

n/N

%

n/N

38.6a 22.2a 37. l a 35.5a 74.7a 68.9a

32/83

58.6b 32.8ab 58.6b 49.4ab 80.5ab 87.8b

41/70 20/61 41/71

60.9b 40.0b 59.9b 53.6b

98/161 48/120 91/152 82/153 175/201 108/112

14/63 36/97 33/93

71/95 31/45

38/77 66.82

36/41

87. l b 96.4b

For each target, percentages not sharing a common subscript differ at the 0.05 level (Fisher's two-tailed exact test).

used the Spanish questionnaire, hereinafter referred to as Spanish-speaking Latinos, n = 107; Latino men who preferred to use the English questionnaire, hereinafter referred to as English-speaking Latinos, n = 85; and whites, all of whom were English-speaking, n = 206). The groups were compared two at a time in three least squares regression analyses; the same array of sociodemographic and medical variables were controlled. The results showed that whites disclosed to a significantly larger percentage of applicable targets than did Spanish-speaking Latinos (/3 = 0.26, P < 0.001). There were no significant differences in disclosure between whites and English-speaking Latinos or between the two Latino language subgroups. The sociodemographic and medical variables that were significant in the initial regression were significant in these as well. Additional tests in which Latinos were divided by nativity instead of language preference produced almost identical results, with a higher rate of disclosure among whites than foreign-born Latinos (fl = 0.24, P < 0.001) and similar disclosure rates between whites and US-born Latinos and between the two Latino nativity subgroups. The length of time in the United States, the third acculturation indicator that was assessed only among foreign-born Latino men, did not correlate with disclosure. The differences in disclosure between whites and Spanish-speaking Latinos and the similarities in disclosure between whites and English-speaking Latinos are shown on a target-by-target basis in Table 3.1. In these uncontrolled analyses, Spanish-speaking Latinos were significantly less likely than their Englishspeaking counterparts to inform their mother, sister, or lover about their HIV infection. Because Spanish-speaking Latinos, on average, lived a greater distance from their parents than either English-speaking Latinos or white men, we controlled for this variable in logistic regression analyses. Previously significant ethnic differences in disclosure to the father disappeared after accounting for distance. The difference in disclosure for the mother between Spanish-speaking Latinos and whites was attenuated but remained significant (P < 0.05) after distance was controlled for. Latino subgroup differences in disclosure to the mother were no longer significant after adjusting for distance.1

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Table 3.2

35

Reasons for not disclosing HIV infection to targets for the two ethnic groups

Reason Other-focused Self-focused Poor relationship Someone else told Tested at the same time Other or ambiguous Rater disagreements

Mol•her

Father

Friejnd

Lovrer

Latino White (,7=74) (n = 56)

Latino White (n = 88) (n = 65)

White Latino (n = 38) in = 24)

White Latino in =22) in = 4)

46

37

31

12

16

17

0

0

8 10 3 0 28 5

7 9 16 0 18 13

8 29 2 0 19 11

3 33 17 0 26 9

27 13 5 0 34 5

17 8 12 0 21 25

50 0 9 9 21 0

50 0 0 0 50 0

Entries are percentage. Sample sizes are slightly smaller than in Table 3.1 because of missing data.

Disclosure of Sexual Orientation Disclosure of one's gay or bisexual orientation to parents varied among the three ethnic subgroups. Disclosure to the mother was highest among whites (76.6%), intermediate among English-speaking Latinos (64.7%), and lowest among Spanish-speaking Latinos (54.2%); only the two extremes differed significantly (Fisher's exact test, P < 0.001). The results for the father were 54.0%, 50.6%, and 38.5%, respectively; again, only the two extremes were significantly different (Fisher's exact test, P < 0.01). Logistic regression analyses indicated that these differences remained significant after distance from the mother and the father were controlled for. There were no ethnic differences in the friend's or lover's awareness of a participant's gay or bisexual orientation; more than 95% of all participants reported that their close friend or lover was aware of their orientation. Consistent with these group-level differences, individual-level analyses indicated that gay and bisexual men who had disclosed their HIV status to a specific target were more likely to have disclosed their sexual orientation to that person. For all men, the associations were significant (Fisher's exact test, P < 0.01) for mother, father, and friend but not statistically reliable for lover, largely because all lovers were aware of participants' sexual orientation. Open-Ended Reasons for Disclosing or Not Disclosing HIV Infection We turn now to the open-ended reasons given for informing or not informing one's mother, father, friend, and lover, of one's HIV infection. Whites were contrasted with all Latinos because of the limited sample size. As seen in Table 3.2, both Latinos and whites were more likely to withhold disclosure of HIV infection from their mother and father out of concern for protecting their parents (e.g., 'I didn't want my mom to worry') than out of concern for protecting themselves (e.g., 'I didn't want to be rejected'). As predicted, other-protective reasons for not telling parents were more prevalent among Latinos than whites (for the mother, 46% versus 37%, and for the father, 31% versus 12%). Analyses

36

H. R. C. MASON et al.

Table 3.3

Reasons for disclosing HIV infection to targets for the two ethnic groups

Reason Other-focused Self-focused Positive relationship Medical reason Tested at the same time Other or ambiguous Rater disagreements

Mother

Fat!ler

Frie:nd

La/er

White Latino (n = 69) (n = 94)

White Latino (n = 33) (n = 46)

Latino White (n= 133) (n=172)

Latino White (/7 = 65) (n= 102)

27 17 20 10 0 20 6

38 11

18 8 0 16 8

34 6 15 3 0 21 21

33 15 13 13 0 22 4

8 23 37 2 0 14 16

6 20 30 2 0 18 24

37 4 7 3 12 14 23

30 5 3 4 12 20 26

Entries are percentages. Sample sizes are slightly smaller than in Table 3.1 because of missing data.

that compared the other-protective category against the remaining (pooled) categories indicated that the ethnic difference was significant for the father (Fisher's exact test, P < 0.01) but not for the mother. The reasons for not telling friends were more or less evenly distributed across the categories. Very few lovers were uninformed. The men most frequently gave self-focused reasons for not informing their lovers. Table 3.3 presents the data on reasons for informing specific targets. Both Latinos and whites were more likely to express other-focused reasons (e.g., 'she has a right to know' or 'he has to get himself tested') than self-focused reasons (e.g., 'I need her emotional support') for informing their mothers, fathers, and lovers. There were no significant ethnic differences in the prevalence of otherfocused reasons for disclosure. The participants tended to cite the positive quality of the relationship and self-focused needs as the primary reasons for informing their friends.

DISCUSSION This study demonstrated that HIV-positive Latino men were more likely than seropositive white men to withhold their diagnosis and their gay or bisexual orientation from significant others, especially from family members. Further analyses that divided the Latinos by level of acculturation revealed that these ethnic-group comparisons obscured within-group variation among the Latinos. Specifically, only less acculturated (i.e., Spanish-speaking or foreign-born) Latinos differed from whites for all disclosure targets; disclosure among Englishspeaking Latinos was similar to that of whites. This general pattern persisted even after we controlled for a variety of sociodemographic and medical factors. We also found that disclosure of HIV infection was associated with the disclosure of gay or bisexual orientation, which replicates previous results (Marks et al., 1992). Because the temporal order of these disclosures was not assessed, the correlation is open to multiple interpretations. First, disclosure of sexual orientation may have preceded disclosure of HIV infection. In this case, the men

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37

who had already come out may have been more psychologically and emotionally prepared to reveal their HIV status. Alternatively, HIV disclosure may have preceded and precipitated the disclosure of sexual orientation. It is also possible that a third variable prompted dual disclosures. For example, the onset of physical symptoms, increased severity of disease, or hospitalization may have rendered disclosure of the infection inevitable and coming out unavoidable. In fact, we found that severity of disease independently predicted disclosure of HIV infection. One explanation for the specific ethnic differences is that traditional Latino cultural values, such as familism and simpatia, inhibited disclosure of HIV infection and of one's gay or bisexual orientation. Although we did not measure these cultural values directly, traditional Latinos may have refrained from divulging this personal information in an attempt to maintain harmony in their interpersonal and familial relationships and to protect family members from any adverse consequences of disclosure. Our findings about subjects' reasons for not disclosing their HIV infection to others support this view. Although both Latino and white men were more likely to withhold their diagnosis from their parents for other-focused reasons, this tendency was somewhat stronger among Latinos. This pattern did not apply to nonfamilial targets (friend and lover). Caution is warranted in the interpretation of these open-ended data. First, we did not probe the subjects to determine any deeper or disguised meanings of their stated reasons. It is plausible that reasons that appear at face value to be consistent with familism or simpatia may in essence serve as culturally acceptable reasons that sublimate underlying fears of rejection because of the sensitive nature of the disclosure. Second, there are rather large numbers of other and ambiguous reasons and rater disagreements in the coding of the reasons for revealing or concealing one's HIV infection. This situation, however, is an unavoidable aspect of any analysis that attempts to provide order to qualitative data, especially when the data reflect personal information and are highly varied. Despite these limitations our findings help illuminate the motives that underlie the decision to inform or not inform specific others about an HIV diagnosis and may benefit mental health specialists in their efforts to counsel seropositive persons. Factors other than cultural values may have contributed to our outcomes. Latino immigrants' disadvantaged social and economic position in society, as well as a fear of deportation for those who are undocumented, may create a generalized tendency to withhold their diagnosis from others to avoid further marginalization, discrimination and stigmatization (Madiros, 1984; Keefe and Padilla, 1989). Consistent with this interpretation, our data indicate that being less educated was an independent predictor of lower levels of disclosure. Regardless of the specific underlying processes, the findings point unequivocally to lower levels of HIV disclosure among less acculturated Latinos. Fifteen percent of Latino Spanish-speakers reported telling none of the six applicable

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H. R. C. MASON et at.

targets, as compared with 4% of whites. These low levels of disclosure do not necessarily mean that Spanish-speaking Latino men receive less social support because they may receive adequate support from the few people they have told or even from significant others to whom they have not disclosed their serostatus. However, it is likely that they have fewer sources of HIV-related support than their English-speaking Latino and white counterparts. This possibility is troubling given the spiraling rates of HIV infection among this population and the mounting evidence that social support can moderate the effects of stress and have immunologic benefits (Kiecolt-Glaser et al., 1984; Cohen and Wills, 1985; O'Leary, 1990; Kemeny et al., 1992). Although these studies suggest the benefit of general support, HIV-related support may be even more important for seropositive persons. Latino Spanish speakers' and immigrants' likely lack of support for HIV-related worries and needs may have a negative impact on their adjustment to living with the illness. In closing, it is clear that HIV- and AIDS-related research and communitybased social services must recognize that Latinos are not a monolithic group and that approaches to counseling and support must be tailored to the specific needs of specific persons. Improving the lives of Latinos with HIV ultimately depends on culturally sensitive research, social services, and outreach. NOTE 1. For Latinos whose parents live in another country, the distance variable may reflect cultural differences as well as geographic inaccessibility. Thus the diminished ethnic differences in disclosure after we controlled for distance may be due in part to the statistical control imposed on cultural factors.

REFERENCES Bakeman, R., McCray, E., Lumb, J. R., Jackson, R. E. and Whitley P. N. (1987) The incidence of AIDS among Blacks and Hispanics. Journal of the National Medical Association, 79, pp. 921-928. Carrier, J. M. (1989) Sexual behavior and spread of AIDS in Mexico. Medical Anthropology, 10, pp.129-142. Centers for Disease Control (1987) Revision of the CDC surveillance case definition of acquired immunodeficiency syndrome. Morbidity and Mortality Weekly Report, 36, pp. 3-14. Centers for Disease Control (1991) Update: acquired immunodeficiency syndrome - United States, 1981-1990. Morbidity and Mortality Weekly Report, 40, pp. 358-369. Centers for Disease Control and Prevention (1993) Update: acquired immunodeficiency syndrome United States, 1992. Morbidity and Mortality Weekly Report, 42, pp. 547-557. Chervenak, J. L. and Weiss S. H. (1989) Sexual Partner Notification: attitudes and actions of HIVinfected women. Paper presented at the 5th International Conference on AIDS, Montreal, Quebec, Canada. Cohen, J. (1960) A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, pp. 37-46. Cohen, S. (1988) Psychosocial models of the role of social support in the etiology of physical disease. Health Psychology, 1, pp. 269-297.

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Cohen S. and Wills, T. A. (1985) Social support, stress and the buffering hypothesis. Psychological Bulletin, 98, pp. 310-357. Diaz, R. M. (1993) Latino gay men and the psycho-cultural barriers to AIDS prevention. Unpublished manuscript, Stanford University and University of California at San Francisco, Center for AIDS Prevention Studies. Diaz, T., Buehler, J. W., Castro, K. G. and Ward, J. W. (1993) AIDS trends among Hispanics in the United States. American Journal of Public Health, 83, pp. 504-509. Domino, G. and Acosta, A. (1987) The relation of acculturation and values in Mexican Americans. Hispanic Journal of Behavioral Sciences, 9, pp. 131—150. Fishbein, M. and Ajzen, I. (1975) Belief, Attitude, Intention and Behavior: An Introduction to Theory and Research (Reading, MA: Addison-Wesley). Golding, J. M. and Karno, M. (1988) Gender differences in depressive symptoms among Mexican Americans and non-Hispanic Whites. Hispanic Journal of Behavioral Sciences, 10, pp. 1-19. Hays, R. B., Turner, H. A. and Coates T. J. (1992) Social support, HIV symptoms, and depression among gay men. Journal of Consulting and Clinical Psychology, 60, pp. 463-469. Hays, R. B., McKusick, L., Pollack, L., Hilliard, R., Hoff, C. and Coates, T. J. (1993) Disclosing HIV seropositivity to significant others. AIDS, 1, pp. 425-431. Herek, G. M. and Capitano, J. P. (1993) Public reactions to AIDS in the United States: a second decade of stigma. American Journal of Public Health, 83, pp. 574—577. Herek, G. M. and Glunt, E. K. (1988) An epidemic of stigma: public reactions to AIDS. American Psychologist, 43, pp. 886-891. Kaplan, M. and Marks, G. (1990) Adverse effects of acculturation: psychological distress among Mexican American young adults. Social Science and Medicine, 31, pp. 1313-1319. Keefe, S. E. and Padilla, A. M. (1989) Chicano Ethnicity (Albuquerque, NM: University of New Mexico Press). Kegeles, S. M., Coates, T. J., Christopher, T. A. and Lazarus, J. L. (1989) Perceptions of AIDS: the continuing saga of AIDS-related stigma. AIDS, 3, pp. 253-258. Kelly, J. A., Murphy, D. A., Bahr, G. R., Koob, J. J., Morgan, M. G., Kalichman, S. C., Stevenson, L. Y., Brasfield, T. L., Bernstein, B. M. and St Lawrence, J. S. (1993) Factors associated with severity of depression and high risk sexual behavior among persons diagnosed with human immunodeficiency virus (HIV) infection. Health Psychology, 12, pp. 215-219. Kemeny, M. V., Solomon, G. F., Morely, J. E. and Herbert T. L. (1992) Psychoneuroimmunology, in C. B. Nemeroff (ed.), Neuroendocrinology (Boca Raton, FL: CRC Press), pp. 563-591. Kiecolt-Glaser, J. K., Garner, W., Speicher, C., Penn, G. M., Holliday, J. and Glaser, R. (1984) Psychosocial modifiers of immunocompetence in medical students. Psychosomatic Medicine, 46, pp. 7—14. Krippendorff, K. (1980) Content Analysis: An Introduction to Its Methodology (Newbury Park, CA: Sage). Madiros, M. (1984) A view towards hospitalization: the Mexican-American experience. Advances in Nursing, 9, pp. 469-478. Marin, G. (1989) AIDS prevention among Hispanics: needs, risk behaviors, and cultural values. Public Health Reports, 104, pp. 411-415. Marin, G. and Marin, B. V. (1991) Research with Hispanic Populations (Newbury Park, CA: Sage). Markides, K. S., Ray, L. A., Stroup-Benham, C. A. and Trevino, F. (1990) Acculturation and alcohol consumption in the Mexican American population of the Southwestern United States: findings from H-HANES 1982-84. American Journal of Public Health, 80, pp. 42-46.

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Marks, G., Richardson, J. L. and Maldonado, N. (1991) Self-disclosure of HIV infection to sexual partners. American Journal of Public Health, 81, pp. 1321-1322. Marks, G., Bundek, N., Richardson, J. L., Ruiz, M. S., Maldonado, N. and Mason, H. R. C. (1992) Self-disclosure of HIV infection: preliminary results from a sample of Hispanic men. Health Psychology, 11, pp. 300-306. Mindel, C. H. (1980) Extended familialism among urban Mexican-Americans, Anglos and Blacks. Hispanic Journal of Behavioral Science, 2, pp. 21—34. O'Leary, A. (1990) Stress, emotion, and human immune function. Pscyhological Bulletin, 108, pp. 362-382. Sabogal, F., Marin, G., Otero-Sabogal, R., Marin, B. V. and Perez Stable, E. J. (1987) Hispanic familism and acculturation: what changes and what doesn't? Hispanic Journal of Behavioral Sciences, 9, 397-412. Schnell, D. J., Higgins, D. L., Wilson, R. M., Goldbaum, G., Cohn, D. L. and Wolitski, R. J. (1992) Men's disclosure of HIV test results to male primary sex partners. American Journal of Public Health, 82, pp.1675-1676. Selik, R. M., Castro, K. G. and Pappaioanou, M. (1988) Racial and ethnic differences in the risk of AIDS in the United States. American Journal of Public Health, 78, pp. 1539-1545. Siegel, K. and Krauss, J. J. (1991) Living with HIV infection: adaptive tasks of seropositive gay men. Journal of Health and Social Behavior, 32, pp. 17—32. Simoni, J. M., Mason, H. R. C., Marks, G., Ruiz, M. S. and Richardson J. L. (1995) Women's selfdisclosure of HIV infection: rates, reasons, and reactions, Journal of Consulting and Clinical Psychology, 63, pp. 474-476. Singer, M., Flores, C., Davison, L., Burke, G., Castillo, Z., Scanlon, K. and Rivera, M. (1990) SIDA: The economic, social and cultural context of AIDS among Latinos. Medical Anthropology Quarterly, 4, pp. 72-114. Stempel, R., Moulton, J., Bacchetti, P. and Moss, A. R. (1989) Disclosure of HIV-antibody test results and reactions of sexual partners, friends, family, and health professionals. Paper presented at the 5th International Conference on AIDS, Montreal, Quebec, Canada. Triandis, H. C. (1989) The self and social behavior in differing cultural contexts. Psychological Review, 96, pp. 506-520. Triandis, H. C., Marin, G., Lisansky, J. and Betancourt, H. (1984) Simpatia as a cultural script for Hispanics. Journal of Personality and Social Psychology, 47, 1363—1375. Vega, W. A., Kolody, B. and Warheit, G. (1985) Psychoneurosis among Mexican Americans and other Whites: prevalence and caseness. American Journal of Public Health, 75, pp. 523-527. Wethington, E. and Kessler, R. C. (1986) Perceived support, received support, and adjustment to stressful life events. Journal of Health and Social Behavior, 27, pp. 78-89. Yep, G. A. (1992) Communicating the HIV/AIDS risk to Hispanic populations: a review and integration. Hispanic Journal of Behavioral Sciences, 14, pp. 403-420.

FOUR

Negotiating Sexual Relationships after Testing HIV-Positive Barry D. Adam and Alan Sears

For people who discover themselves to be HIV-positive, the dilemmas around the initiation or continuation of sexual, emotional, and romantic relationships are acute. With highly charged public debates over responsibility, control, and morality occuring around them, seropositive people and those closest to them make day-to-day decisions which reconstruct intimacy and sexuality in the context of HIV disease. This paper reports on the practices and reflections of people with AIDS and HIV disease in working through the dilemmas posed by HIV in the erotic sphere. This study comes from a larger research project on the effects of HIV on personal, family, and work relationships and seeks to discover how problems associated with seropositivity are solved over time in face-to-face interaction. The fundamental 'knowledge-interest' (see Habermas, 1968; Barnes, 1977), which organizes this research, is to contribute to practical knowledge for people living with HIV disease and their caregivers. In contrast to much of the medical and social research literature which has made people with AIDS the objects of analysis, this work explores the subjectivity of AIDS (Adam, 1992a). We focus primarily on how people make sense of HIV disease, the coping strategies employed for dealing with the social disruptions imposed by the disease, and the re-ordering of everyday life made to accommodate its presence. Our concern, then, is to understand how people account for, cope with, and work through problems associated with HIV. As such, this work takes seriously Nancy ScheperHughes's and Margaret Lock's (1986, p. 137) admonition to critical medical anthropology to recover 'the particular, the existential, the subjective content of illness, suffering, and healing as lived events and experiences . . . giving voice to the submerged, fragmented, and muted subcultures of the sick and

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disabled.' The orientation of this study departs from the extant AIDS research literature which employs a series of standardized psychometric tests to demonstrate elevated states of stress or depression among people with AIDS (e.g., Atkinson et al., 1988; Joseph et al., 1990). Our interest is in inviting subjects to tell 'their story', with minimal intervention on our part, using a pre-determined analytical grid. We employ inductive analysis in an attempt to preserve the respondents' construction of events and identification of problems. Ours is the anthropological 'concern with the native's own category-system . . . whether such concern is labeled "emic", "insider", or "experience-near" observation' (Herdt and Boxer, 1991, p. 172). We make no presumption concerning psychological stage theories in the progression of disease, such as that proposed by KiiblerRoss (see Kessler, Price and Wortman, 1985, p. 537), nor do we impute personality types into respondents. The coping strategies (see Adam, 1978) reported here constitute 'recipe knowledges' (see Schutz, 1973) employed variably according to life-period and situation, and do not amount to fixed personality traits or global policies. The accounts here show how people living with HIV actively interpret, engage and reconstruct the uncharted territory of intimate relations in the face of AIDS. In contrast to the bulk of existing research, the focus here is on a non-clinical sample which reveals the effect of disease in non-hospital settings - in the words of Anselm Strauss (1975, p. vii), 'being rich in details about what life is like "back home"'. This project differs from many medical and nursing studies which examine the practices of people with HIV as a problem in 'patient management'. Rather, the intent here is to recapture at least some of the social context which lends meaning to the actions and attitudes of people with HIV, which can appear irrational or even 'pathological' through the medical gaze. The critique of often concealed commitments in the official discourse of medical and objectivist social research is now well established in a wide range of research areas directed toward subordinated peoples (Adam, 1992a). The classic pattern revealed by these critiques involves the application of dominant norms to the social relations of subordinated peoples which become constructed as 'troubled', defective or pathological as a result. The ensuing scientific images are subsequently used to invalidate the experiences of the oppressed and the legitimate state or professional control of researched populations. By attending to the voices of those living with HIV and AIDS, we seek to retain the critical element of critical medical anthropology by contributing to the empowerment of sufferers (Singer, 1990). METHODOLOGY This work draws on interviews with 60 people with HIV disease or AIDS and 40 of their caregivers1 living in southeastern Michigan and southwestern Ontario. They volunteered to be interviewed primarily through three routes: (1) following presentations made by the authors to support groups, (2) through personal referrals made by people who had already been interviewed, and (3) through

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other personal networks developed in AIDS-related organizations due to the authors' long-term involvement in community AIDS work. The response was typically good with majorities of each support group expressing willingness to participate. This project differs from much of the established AIDS literature by drawing respondents from outside the epicenters of the epidemic,2 and by moving beyond the frequent concentration upon gay, white, male and middle-class subjects in order to follow the changing face of AIDS, as drug users, people of color, and women appear more frequently in the epidemiological statistics. We aimed to capture some of the diversity of experience around AIDS and HIV and to identify both some trends common to many and some telling, unique experiences. Of seropositive respondents, 38 initially identified themselves as ethnically European, 20 as black or African-American and 2 as aboriginal.3 Two respondents also mentioned aboriginal ancestry and one other also mentioned black ancestry. Thirty-seven self-identified as 'gay' or 'homosexual', 7 as bisexual and 16 as heterosexual. Forty-eight were men; twelve were women. Thirty-five were living on less than $10,000 per year, 24 on more. Finally, 15 mentioned having had infections which would qualify for the CDC definition of AIDS, 35 mentioned symptoms consistent with HIV disease and 10 mentioned no symptoms. Given this recruitment profile, we do not claim that this set of respondents constitutes a sample fully representative of the universe of seropositive people. It could be argued, for example, that people drawn from support groups may over-represent those who have overcome the denial or fear which may inhibit their contact with an AIDS-related organization or, on the other hand, that they may undersample those who have 'graduated' from support groups to coping particularly well on their own. Given this sampling profile and the aim of charting the interactional linkages among everyday problems and solutions in living with HIV disease, there is little point in enumerating or measuring behavior. Each section reports the more common responses first; less common, later. Nevertheless, we have not attempted to collapse responses toward a mean or to cast away 'outlier', singular or unusual experiences. Indeed, all of these experiences and practices have the potential to offer insight into the successful navigation of the treacherous waters of the 'second illness' of 'stigma, rejection, fear, and exclusion that attach to particularly dreaded disease' (Scheper-Hughes and Lock, 1986, p. 137). Respondents chose whether to be interviewed in their homes, our homes or the site of their support groups. While we expressed a preference to interview people alone, their comfort was our primary concern. All but four seropositive respondents were interviewed alone. One was interviewed with a trusted caregiver and three seropositive friends were interviewed together in accordance with their preference. Forty-seven were interviewed in Michigan; 13 in Ontario. Interviews were conducted in 1990 and 1991 and typically lasted one-and-a-half hours. Despite the frequent presumption on the part of the reviewer that people with HIV would be in a fragile psychological state which could be easily shattered by

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the interview process, we found them eager to share thoughts and to work through issues that had preoccupied them for some time. Reviewers' anxieties mirrored the social taboos often shared by respondents' families and friends who tiptoed around issues that people in the syndrome put considerable thought and energy into solving. In many cases, we found that gay people, people with very little income, people of color and people with long histories of intravenous drug use were pleased to articulate their concerns to someone interested in their opinions and perceptions.

SEX AFTER TESTING HIV-POSITIVE The continuation, resumption or initiation of sexual relationships after testing HIV-positive can be overlaid with a variety of issues. Sexual expression is a crucial aspect of life for many people, so that interruptions to it can be perceived as threatening to well-being. At the same time, testing HIV-positive raises definite issues for people who are seropositive and their partners. Among other things, they must work with: fears of transmission, the complexities of negotiating safer sex, a social climate of stigma and demonization, and changes in sexual desire linked to health status. Through often tentative initiatives and day-to-day experimentation, many respondents successfully work through these issues and (re-)construct a sex life after testing positive. Certain patterns emerged in the process of constructing these sex lives, though these should not be seen as stages through which everyone passes. Those not in ongoing couple relationships were often celibate for a period following testing positive, sorting out early quandaries. This period was often followed by one of looking for new relationships, in which people weighed the relative advantages of HIV-positive and HIV-negative partners, worked through issues of disclosure to actual or potential sex partners, and developed ways of dealing with safer sex. Those in ongoing couple relationships faced similar questions, as well as other problems specific to couples. Some issues varied between couples in which both partners were HIV-infected (symmetrical) and those in which only one was infected (asymmetrical). We had expected that there would be sharp differences of pattern among the diverse groups we interviewed in the area of sexuality. It might be expected, for example, that gay men would show substantially different styles of negotiating sexual relationships than heterosexual women or men, yet strong parallel experiences emerged in all of the groups.

TESTING POSITIVE FOR THOSE NOT IN COUPLE RELATIONSHIPS Early Quandaries after Testing HIV-Positive For many of those not currently in couple relationships, testing HIV-positive initially brings about a withdrawal from - even revulsion to - having sex. The

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most common response to testing HIV-positive was to pull back in order to re-orient oneself in a world now shorn of many familiar co-ordinates.4 With many expectations and aspirations acquired over the years now challenged by an apparently imminent life-threatening disease, many people take time to reassemble their projects and intentions. Sexuality is no exception. Celibacy during a period of personal re-assessment was reported by several respondents. As one black gay man remarked, I did become celibate. I didn't have sex with anyone for two years. I just lost the desire.

A gay man with aboriginal ancestry concurs: You go through a period of withdrawal. You do. You don't want to have sex because this is what caused the whole problem and you just want to kind of let things ride for a little while . . . [but] you can't be alone forever and you shouldn't be alone forever.

Similarly, the HIV-negative lover of one man with AIDS remarked: I've felt diminished sexually . . . The subject of sex has become so frightened with significance and with hazard.

Testing positive is immediately complicated by the apprehension that one's sex life may be irrevocably spoiled and that no one is going to want to become sexually or emotionally engaged in a relationship of any duration. In the words of one man of southern European descent: It takes the romantic part of your life away. That part is over. You meet a woman. You go to a bar or wherever. You go to her place, your place, you're doing things, and you've got to tell her what you've got and that smashes everything. There is no answer.

For some, the prospect of new sexual relationships is further overcast by bereavement. Having cared for and suffered with a partner who subsequently died of AIDS, a new sexual engagement may carry with it a potential sense of betrayal of the devotion which bound both together in the struggle against illness. Widowhood, as well, poses well-documented problems to survivors, with or without HIV, by opening problems of 'starting over' at an older age and submitting oneself to the perturbations of dating. For one white gay man, A. was my soul mate and I'm just waiting to see him on the other side. I'm not interested in getting involved in another relationship . . . because I would be looking for someone to be like A. ... If I never screw again, I'll be okay. I've done my share.

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For some, celibacy seems unfair and unnecessary; for others, who later reconsider sexual abstinence, meeting new people seems a daunting if not insurmountable problem. One white gay man recalled the dilemma this way: I wasn't involved at the time with anyone and I remember I figured that this was the end of the line for that. I wasn't going to have any more sexual relationships. I felt real dirty and unclean. No one would want me and who would want to get involved with someone who is going to be dead in six months?

Several respondents, who were acutely aware that HIV is a burden which cannot be divested, wondered how anyone else could be expected to help shoulder it, if only indirectly, by entering into a relationship with them. There is disbelief, and sometimes an overlay of guilt, in hoping that anyone might be 'convinced' to consent voluntarily to the implications of living with AIDS. One heterosexual man mused as follows: Starting new relationships? No one will ever love me again . . . This was my favorite few lines and I used to whine about these and I really believed it too . . . the chances are, you know, I'm not going to be around much longer, you know, so what's worth getting involved there? And even if I did . . . the risk of possibly infecting the other person. They can never have a child . . . And then the impact of, you know, what type of rejection or things that they would have to deal with because of what you're going through . . . And then when do you tell them, you know? Do you . . . just meet somebody and . . . finally, it's time to go to bed and you say, 'Oh, by the way, I have to tell you I have AIDS'? And that's not fair. Or do you tell people right after, 'Hi, I find you really attractive. Would you like to dance? I have AIDS'?

These quandaries appear, at least at first, to close off the possibility of future intimacy and do so for people in their twenties and thirties who very often feel completely well. Among the many re-assessments of future plans and aspirations can come a dread or resignation to the end of sexuality. Yet, as several of the above statements suggest, this first appraisal of the state of being HIV-positive may give way to an awareness of new possibilities. Through sometimes fortuitous events, this bleak understanding may be replaced with a sense that new relationships can happen. Looking for New Relationships Respondents repeatedly expressed an overriding fear of transmitting HIV to new partners. For many, the acceptable alternative to celibacy was to meet other seropositive people. This approach ostensibly overcame two major impediments to courtship: (1) the danger of infecting someone new, and (2) the problem of

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revealing serostatus and thus facing rejection or incomprehension. As one black man expressed it: In the past, I might have been walking down the street or been some place and saw a woman and started talking to her, but I don't do that now because I would have to develop a relationship with her and then when I felt that maybe we should have sex I would have to tell her I had this disease and I can use a rubber to protect you but if it bust, you might contract it, and I will kill you. It stops me from like meeting new women basically . . . I don't think anyone in their right mind would have a relationship with a person who is infected. Not when you can have one with a person who is not infected.

A gay white man concurs: You go back and forth. There is a conflict. You want to do something but still you are afraid and you have a little bit of guilt. What if you give somebody something? Could you live with that guilt?

A bisexual black man found the experience of dating an HIV-negative woman renewed his fears about transmission and continually reminded him of his own serostatus: I told her before we did anything and although we would get together from time to time, she always would jump at a little pimple on her face or maybe a rash that she can't explain. I don't blame her, b u t . . . that has made me a little nervous about dating people who aren't HIV now.

A heterosexual white woman hoped that an HIV-positive partner would allow her not to have to abandon her wish to have children. I don't think it is fair to another person to have to go out with someone like me. Though people tell me that is wrong and I am depriving myself . . . I always wanted to get married, have kids, and I figure I can't do that now unless I get somebody else who is positive.

Many of the respondents in this study had attended support groups for people with HIV at least partly with an interest in meeting new people and establishing sexual relationships. Few, however, reported starting relationships of any consequence with another support group participant. In contrast, three respondents began new relationships in drug rehabilitation programs or gay Alcoholics Anonymous groups. In each one of these cases, the new relationships were with seronegative people. The different experiences in starting new relationships with people in HIVrelated as opposed to drug and alcohol support groups most likely stem from

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divergent group dynamics. The intensive, structured, and lengthy process of reexamining and rebuilding a life apart from drugs in association with other group members provided opportunities for divulging HIV-status in a larger confessional context at the same time as other group members were revealing their vulnerabilities and developing trust with each other. The AIDS support groups, by contrast, tended to be less structured, more episodic, and have a changing membership. The intent expressed by many respondents to establish new relationships with HIV-positive partners seldom worked out in practice. Others reasoned that neither celibacy nor dating HIV-positive people was necessary, believing that a consistent policy of practicing safer sex fulfilled the responsibility of guarding against transmission (see Siegel and Krauss, 1991, p. 22). One black woman remarked: My thing is I would practice safe sex anyway, so when I meet a guy, whether they know I have this or not, I am not going to tell them that I have it, but in the same token I'm going to have safe sex.

Safer sex protected not only a partner of unknown HIV-status but also limited the contraction of new infections by people with weakened immunity. One gay man summed up the pragmatic approach as follows: If they would have asked me, I'm sure I would tell them. But I didn't feel that I [had] to put a neon sign out in front too.

Still, adopting safer sex is not necessarily easy or automatic. One gay black man remarked, 'I don't care what nobody says, it's not going to feel the same'; a gay white man said: I didn't like the idea of practicing safe sex at first but now I actually enjoy it more than I enjoy unsafe sex. Condoms, I think, are lots of fun.

Several respondents resented that the responsibility for safer sex often fell more heavily upon the HIV-positive partner. One white gay male protested: That's why I get so upset now because I've been hearing a lot about court cases where people are charging and as far as I'm concerned, these people are two consenting adults and the person who isn't HIV-positive, he has just as much responsibility as the person who is positive.

For one bisexual black man, safer sex was relatively routine, though he had to take the initiative: If you initiate it, people are apt to think that he knows and he has reason for concern, and usually follow through in precopulation.

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This responsibility sometimes extended to protecting partners willing to expose themselves to infection. A white gay man found that 'sometimes, I mean I'll still tell a guy and he'll still want to do the same old things'. Disclosing Seropositivity While not telling but playing safe suffices on some occasions, enduring sexual relationships inevitably raise the question of disclosing seropositivity. Some people learn inadvertently or by trial and error what does not work. A black woman waited until a critical moment to raise her serostatus: I tried, but maybe I did it wrong, cause I waited until he got in the bed. He had all his clothes off, he got up, got out of the bed - I am still in the bed. He was gone - you're laughing5 - but that messed me up.

A man of French Canadian descent delayed his disclosure for several weeks: With one guy I waited six weeks to tell and he got very upset. Maybe I thought, well, maybe I should just wait and tell him after he gets really close and falls in love with me, you know, and when I tell him, it will be too hard for him to reject me, but I don't think that was fair to him and I wouldn't do that to anybody again . . . Since then I've dated about five guys and I've told each one immediately. I tell them on the first date. Every single one of them has said, thank you for telling me.

Nearly everyone expected the worst in revealing their HIV-positivity, but many were pleasantly surprised. One gay man recalled that his first disclosure of serostatus to someone he met at a bar elicited the same disclosure by the other man. Other gay men shared the same experience. A bisexual man found that the woman he was seeing at the time then revealed a life-threatening disease to him that she had been concealing. Virtually all respondents with experience in disclosing their HIV-status to new people had positive stories to tell. After several weeks of agonizing over confessing to a woman he had dated but not had sex with, one man could scarcely believe her response: It didn't mean anything to her. It really didn't. And I thought this girl's sick. There's something wrong with her. . . It's almost two years now. She's still here. She still supports me 100%.

A man with aboriginal ancestry had a similar experience: I phoned up and said I want to start a relationship with you but I said, to tell you the truth, I'm seropositive and we must know that upfront because I

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ain't going to pull any punches. He was very good about taking it all in his stride and said, that's okay, I'm glad you told me ... He thanked me. He said other people wouldn't be as forward, as brave, that kind of thing. We started a relationship. It lasted a year and a half - good, healthy fun, sexually fulfilling, socially fulfilling.

For those most experienced in the area, there was agreement that 'sooner was better' made the best policy. While some preferred to disclose on the second date, others had become used to telling right at the beginning. A gay black man stated: I tell them even before we hold hands because I don't want to waste my time falling in love with somebody and then find out, 'No, I can't deal with that.'

A white gay man summed up the reactions he had received from his disclosures this way: Usually they're going to nominate me for sainthood and how courageous I am or a lot of times, they're very blase and couldn't care less. Very rarely do I get much of a reaction. People seem to live with it okay. And the more you tell people, the easier it is.

From the viewpoint of the HIV-negative partner, entering a new relationship with an HIV-positive partner may come with some trepidation. This woman of eastern European derivation recounted: I was very scared but I trusted him. Anything I wanted to know, he would tell me ... He was completely open from day one. It was a long time before we had sex. I think he gave me about 5,000 backrubs.

Of course, not everyone takes the news well. One man of eastern European background recounted: I was dating somebody for a short time. Then he called me up and said, well, my therapist said I shouldn't date you cause you're going to die soon . . . I was just furious.

Another found that the woman he was dating seemed fine with his serostatus until he first became ill. Several respondents found methods to ease the way to self-revelation. For some affiliation with an AIDS organization, discussion of AIDS work, or participation in a support group provided a conversation stratagem for 'feeling out' the other person's views on HIV. Others permitted themselves to be seen taking pills every four hours or carried a pill timer with them, both of which function in the gay community as an 'early warning system' to 'tip off those

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around them. One gay black man checked out other people's views on AIDS first: I just bring up the subject. I say, 'Well, a lot of people are talking about HIV just basically to get an idea, their reaction. They can explode. They get paranoid and don't want talk about it. Well, then I know they are not the person to discuss this with.

Finally, it must be noted that in several instances, disclosure of seropositivity had entirely unexpected results. While most people with HIV, especially soon after testing positive, worry about stigma and rejection, several respondents brought up occasions where they had intentionally revealed their HIV-status in order to put off unwanted suitors. A black woman reported this incident: I said, 'Look, we can never, never be intimate. We could be friends, but we can never be intimate' and he was like, 'Why?' I took a deep breath and I told him . . . and he said, 'yeah okay, I hear what you are saying, so when can we get together? . . . I read the papers. I know how to use condoms. They are all right with me/ . . . He was the only one who left me speechless.

Similarly, a black bisexual male wielded his HIV status to cool off a relationship he intended to leave: Actually I was hoping that this would drive her off ... At first she was angry at me ... and I just thought that when she found out, this would be the final straw . . . and then she started calling me back . . . and then she started asking about getting back together again.

A white gay man complained: I was telling the person so that, actually, I wanted to put them off and it didn't put them off in the least. They just were very aggressive about it, so aggressive that it put me off.

The act of confession itself may have an erotic component to it. The revelation of a potentially discreditable aspect of self, carries with it at least an implicit appeal for trust and compassion by the other. Indeed this exposure of the self may be read as an opening for a corresponding confession or expression of support as in the examples of others' telling of their illnesses mentioned above. The Alcoholics Anonymous and drug rehabilitation groups functioned similarly to create mutually supportive bonds among their members which, in certain instances, grew into sexual relationships. One man was surprised to find that women approached him after he made public presentations as a person with AIDS that followed a confessional mode developed in drug rehabilitation therapy. One woman disclosed her serostatus to a former boyfriend who replied, 'If you

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ever get divorced from your husband, you can come back'. A call to a former lover to finalize a property settlement in a will resulted in the lover leaving a job in another city in order to move back to resume the relationship with the man who called. AIDS may come to function as a trope in a romantic discourse which inserts the other as the hero now able to demonstrate his love to the damsel in distress. Our respondents had no problem shifting the gender terms of this formula to become rescuing heroines or comrades to fallen warriors.6 At least in certain circles, a subtext which confers a slightly transcendental quality to people with AIDS is discernable (Herek, 1990), the supplementary obverse of the hegemonic text which has written people with AIDS alternately as victims or demons. It is as if the cultural construction of people with AIDS jolts them out of the plane of the 'ordinary' toward both the 'demonic' (Watney, 1987; Adam, 1992b) and the 'angelic', the converse category upon which the 'demonic' depends. This dual extraordinary status can be observed among other stigmatized and oppressed peoples (Adam, 1978, p. 44). TESTING POSITIVE IN THE CONTEXT OF AN EXISTING RELATIONSHIP When one or both of the partners in a current relationship test HIV-positive, many of the same issues arise, but couples often must actively adjust comfortable, routine, and well-liked patterns of interaction. These adjustments may vary between symmetric (couples where both partners are HIV-positive) and asymmetric couples (where only one partner is seropositive).7 Despite a widespread perception of the abandonment of people with AIDS by their domestic partners propagated by the media in the mid-1980s (Altman, 1986, p. 60), respondents in this study insisted that in the few post-test break-ups of couples which did occur, HIV was no more than a minor factor. On the contrary, in several instances, testing positive led to the initiation of distancing or break-up by the partner with HIV. Like the single people reviewed above, many partnered individuals experienced a sense of de-sexualization, withdrawal, and worthlessness after diagnosis. One gay black man put it this way: I just started to push away. In other words, I wanted to end this relationship. I don't want to subject anyone to what is wrong with me and eventually it did end and it ended on a very good note, not a bad note. I keep in touch with his parents now; they keep in touch with me.

An HIV-negative lover of another man found: He was the one who was standoffish from it all. Any move I was trying to make towards him was like, no, get away, get away from me, because he didn't want to hurt me ... figuring we're going to get too deep into this and it's too scary for him. So I had to break through that barrier and when

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I did and started just mutual masturbation for sexual contact and what not, it was like somebody took a ton of weight off of his back.

A woman of southern European background remarked: He hates condoms - and I would feel guilty about that because it would take him longer to climax. Oh God, this is all my fault; he wouldn't have to do this if it weren't for me. So we just quit having sex for quite awhile.

Problems in the introduction of safer sex practices arise in both symmetric couples, who attend to warnings by public health officials of the danger of reinfection, and in asymmetric couples who must guard against HIV transmission. One woman expressed the problem of coping with the message implied by the introduction of condoms into a relationship: The issue is we never used them before . . . Because he has to use them now, what does that mean? That means that he could give me - that he is a vector of disease. That is, psychologically, it takes away from the fun part of it ... Unfortunately we have not gotten to the point where we could . . . resume where we had left off years ago.

For gay male couples who had heard the safer sex message many times before, the adjustment was sometimes smoother: We don't enter each other or fist. We learned new turn-ons - or to us anyway - putting a rubber on each other, that is a turn-on now.

Nearly all of the symmetric couples in this study stated firmly that the transition to safer sex had been made and remained a consistent policy in their relationships. The adoption of safer sex proved difficult in several asymmetric couples and, again, in several instances, the seropositive person felt responsible for its introduction. As far as sexual activity . . . I have to encourage her now and then or remind her what's safe, what's not safe and be careful (white heterosexual male). Sometimes he act like he can't wait and I might be sleepy but he does stuck me, but he still straight [HIV-negative] thank God. But he not worried about that. I be the one that be saying, 'use a condom' (black heterosexual female). We had a real hard time dealing with that one because my lover really didn't see any purpose in safe sex and he said, 'we've been doing it this way for six years and I haven't become positive yet . . . I'm obviously not going to get it from you' (white gay male).

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The seronegative partner may feel, however, that he or she is being kept to too strict a standard of safety. This white gay man complained: Safer sex is not obnoxious but it's a restriction . . . Everything that is listed as safe sex, mutual masturbation, . . . is not my cup of tea. Condom use is okay but he rejects the idea of doing anal intercourse with a condom because condoms are not 100% safe.

A 'rational man' model of sexual behavior might predict that asymmetric couples would be quicker to adopt safer sex given the imperative to protect the uninfected partner, whereas failure to practice safer sex among symmetric couples might be more likely as it leads to less serious and more abstract consequences. The examples here suggest a deeper logic and a different conclusion flowing out of a complex and treacherous interplay of meanings. The asymmetric test result violates a fundamental property of couples by rupturing their sense of a shared fate in its designation of one partner as marked by a life-threatening disease and as a potential threat to the other. In some sense, the HIV-negative partner may seek to abstain from confirming this script by refusing to comply with this stigmatization of his or her partner through failing to protect himself or herself from the imputed threat of infection.8 While the shift toward safer sex among symmetric couples can remain consistent with their sense of a shared fate, it must signify a divergence for asymmetric partners. Ultimately all couples must embrace an essentially scientific, abstract, but highly disturbing 'fact' into an everyday reality which seemed perfectly sufficient and comfortable up to that point, if they are to make the transition to safer sex. More than one individual in an ongoing asymmetric relationship mentioned that their safer sex practices were not always consistent. Finally, a considerable issue in sexuality is the effect of illness itself. A man of northern European ethnicity stated: Since I have had pneumonia and my energy level dropped, I really don't have the desire for the sex. So he says it doesn't bother him, that he understands. Sometimes I think it bothers me more than it does him.

A heterosexual man of eastern European background concurred: I don't think it affected us in terms of the intimacy. Frequency probably has changed because of fatigue and that has been probably the main stumbling block.

Kaposi's sarcoma, which inflicts visible lesions, poses special problems. One gay man expressed sharp disappointment at the spread of (well-camouflaged) lesions over his body:

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I have people constantly telling me: well you are still attractive, you are still fascinating, you are still personable, I could listen to you for hours, and I say, well that is all shit because when the lights go out, you are going to feel, even if you don't see them. You are going to feel bumps all over my body.

Another, who was in a relationship, commented: There's a lot that goes along with dealing with AIDS . . . fatigue, getting sick occasionally, having a cold and it's severe . . . having lesions. I have a lot of them on my penis and scrotal sac, probably ten little spots and it just looks funny and I'm sure it affects a little bit how B. feels.

The lover of another man with AIDS remarked: He's lost a lot of the body and his muscle structure has deteriorated and stuff. . . I've managed to, to kind of bring him off in a safe and gentle way a couple of times but it's hard to have sex with him in a sense that's satisfying to me. I think he knows that. I know he knows that.

Elsewhere in the same interview, he reflected on the change in their relationship: The eros was still there but it was transformed in a way to a different kind of love. I mean I would still cuddle him and hold him and all of that but it wasn't sexually charged so much as it was passionate . . . in the sense that his life was literally in immediate jeopardy and I thought he was lost and I was beginning to mourn him and have continued to mourn him. I mean I couldn't talk about this, couldn't think about this without crying. I was crying at work.

CONCLUSION In the early period after testing, some people with HIV infection mourn the loss of their sexuality and see that loss as part of a downward trajectory. The people we interviewed often went through a period of withdrawal from sexual activity as they sorted out issues in living with HIV infection, but, over time, took it up again. They resumed sex in ongoing couple relationships or found new partners. The construction of sexual activity after HIV infection involved the negotiation of a number of specific issues. Many of those seeking new relationships felt that it would be easier with another HIV-positive person. Yet, this did not necessarily work out in practice. These respondents found that HIV support groups, for example, did not often prove to be successful places for establishing relationships. Many people we interviewed did, however, develop new relationships. This meant coming to terms with issues of disclosure of seropositivity. While in shorterterm relationships disclosure was not necessarily seen as required as long as safer

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sex was practiced, in ongoing relationships the issue of seropositivity arose. The most common response among these people with HIV disease was that early disclosure is generally the best policy. Potential partners often responded well to disclosure of seropositivity, indeed sometimes 'too well'. Respondents who sought to exploit the 'AIDS menace' cultural code by using their seropositivity to fend off unwanted sexual advances sometimes found that it failed to do so. People with HIV infection often found the responsibility for following safer sex fell on their shoulders, even when partners knew of their seropositivity. This was true, as well, in ongoing couple relationships, particularly those in which only one partner was seropositive. Couples also faced the issue of changes in desire associated with states of health, raising complex issues for both ill and healthy partners. There is sex after HIV infection and it raises a number of practical issues. These practical issues are overlaid with very rich negotiations of meanings that sometimes defy a 'rational person' model of sexual life. Safer sex is not only a practical problem with a specific solution, but it is also a complex negotiation about love, trust, mutuality, and the erotic. Similarly, the same social codes which would demonize people with HIV infection and cast them as the negation of desire carry with them the obverse - the eroticization of the HIV-infected. This is not to argue that sexuality is not subject to conscious control, but rather that erotic and emotional relationships draw upon a complex interweaving of social codes, practical negations, and layered meanings. NOTES 1. Several seropositive respondents were also caregivers to other HIV-positive friends, lovers, or spouses. 2. Rose Weitz's (1991) study Life with AIDS is a notable exception to this pattern, having been done in Arizona. 3. Several US participants also indicated Canadian parentage; similarly some Canadians mentioned American heritage. 4. This issue will be addressed further in future reports from this study. 5. The 'you' in this instance refers to two other women who were also being interviewed at the same time. 6. This theme appears in the form of Greek statuary on the cover of Paul Monette's (1988) Borrowed Time, a memoir of the death of a man from AIDS by his lover. 7. This section continues with the examination of impacts of HIV on sexual relationships. The effects on other aspects of relationships will appear in later reports from this study. 8. Levine and Siegel (1992, p. 63) report a similar finding in their investigation of unprotected sexual practices.

REFERENCES Adam, B. D. (1978) The Survival of Domination (New York: Elsevier/Greenwood). Adam, B. D. (1992a) Sociology and People Living with AIDS, in J. Huber and B. Schneider (eds), The Social Context of AIDS (Newbury Park, CA: Sage), pp. 3-18.

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Adam, B. D. (1992b) The State, Public Policy, and AIDS Discourse, in J. Miller (ed.), Fluid Exchanges (Toronto: University of Toronto Press), pp. 305-320. Altman, D. (1986) AIDS in the Mind of America (Garden City, NY: Anchor). Atkinson, J., Grant, I., Kennedy, C., Douglas, D. (1988) The prevalence of psychiatric disorders among men infected with human immunodeficiency virus. Archives of General Psychiatry, 45, pp. 859-864. Barnes, B. (1977) Interests and the Growth of Knowledge (London: Routledge). Habermas, J. (1968) Knowledge and Human Interests (Boston: Beacon). Herdt, G. and Boxer, A. (1991) Ethnographic issues in the study of AIDS. Journal of Sex Research, 28, pp. 171-187. Herek, G. (1990) Illness, Stigma, and AIDS, in: P. Costa and G. Vanden-Bos (eds), Psychological Aspects of Serious Illness (Washington, DC: American Psychological Association). Joseph, J., Caumartin, S., Tal, M., Kirscht, J. (1990) Psychological functioning in a cohort of gay men at risk for AIDS. Journal of Nervous and Mental Disease, 178, pp. 607-615. Kessler, R., Price, R., and Wortman, C. (1985) Social factors in psychopathology. Annual Review of Psychology, 36, p. 531. Levine, M. and Siegel, K. (1992) Unprotected Sex, in: J. Huber and B. Schneider (eds), The Social Context of AIDS (Newbury Park, CA: Sage), pp. 47-71. Monette, P. (1988) Borrowed Time (San Diego: Harcourt Brace Jovanovich). Scheper-Hughes, N. and Lock, M. (1986) Speaking 'truth' to illness. Medical Anthropology Quarterly, 17, pp.137-139. Schutz, A. (1973) Interpretive Sociology, in: H. Wagner (ed.), On Phenomenology and Social Relations (Chicago: University of Chicago Press). Siegel, K. and Krauss, B. (1991) Living with HIV infection. Journal of Health and Social Behavior, 32, pp.17-32. Singer, M. (1990) Reinventing medical anthropology. Social Science and Medicine, 30, pp. 179-187. Strauss, A. (1975) Chronic Illness and the Quality of Life (St Louis, MS: Mosby). Watney, S. (1987) Policing Desire (London: Comedia). Weitz, R. (1991) Life with AIDS (New Brunswick, NJ: Rutgers University Press).

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SOCIAL SUPPORT

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FIVE

Support Service Use by Persons with AIDS and their Caregivers Richard G. Wight, Allen J. LeBlanc and Carol S. Aneshensel

INTRODUCTION Previous research has focused on describing the types of services that have emerged to meet the needs of the AIDS-affected community. There is little research concerning predictors of service utilization, particularly in the presence of a third party, i.e. an informal caregiver, who is also providing similar types of support. Additionally, there is scant information available concerning unmet needs for AIDS services and the barriers to meeting these needs (McCann and Wadsworth, 1992; Butters et »/., 1993; McCormick et al., 1993; Piette et al., 1993). It is important to begin to compile this type of information given the expanding need for such services and the potential benefits these services offer. Thus, the purpose of this analysis is to examine the types of support services used by persons with AIDS (PWAs) and their caregivers, the factors related to service use, and perceived unmet needs and barriers to use. Disease progression among PWAs typically produces increasing symptomatology, illness, and disability. In many cases, the PWA requires assistance with virtually all activities of daily living. Others require less personal care, but need substantial assistance with household maintenance, transportation, or meal preparation. As the number of AIDS cases increases, so too does the need for such assistance. Moreover, as longevity increases for PWAs, the scope of assistance expands to include a broader array of tasks and services. For example, the trajectory for care may include longer intervals of intense assistance and everchanging medical care regimens. Care responsibilities often fall upon the shoulders of the persons who comprise the PWA's social network. This situation is not unlike that of long-term caregiving among the frail elderly, where the majority of care is provided by the family as distinct from institutional sources of care (Brody, 1985; McCann, 1990).

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Informal caregiving for PWAs, however, is not limited to traditional family members: caregivers are also likely to be drawn from the ranks of gay lovers, friends, and other members of the HIV-affected community (Turner et al., 1994). Usually with little or no training, these caregivers become financial advisers, service co-ordinators, and personal attendants. The tasks performed by informal caregivers mirror many of the types of services provided by community-based AIDS organizations. Many of these organizations emerged in the early 1980s to fill the gap left by an inadequate governmental response to the epidemic. AIDS service organizations were begun typically by gay men acting as volunteers and helped to make counselling and other support resources more accessible for PWAs and individuals in high incidence groups (Arno, 1986; Silverman, 1988; McGuire, 1989; McCann, 1990; Katoff, 1992). The functions of these formal supports range from facilitating access to medical treatments for PWAs to providing practical and emotional support to both PWAs and their caregivers. Each type of service can be seen to occur along an overall continuum of HIV-related care (Benjamin, 1989). Key elements of this continuum include personal care, help with household chores, help with medical regimens, money management, legal assistance, emotional support, and training and support for the informal caregiver. The partnership between formal support services and informal caregivers creates a situation whereby professionals and lay persons are working together to reach a shared goal: assisting the PWA to manage his or her illness. A critical contribution of this partnership is enabling PWAs to continue to live in the community as distinct from being hospitalized (Katoff, 1992; Kelly et al., 1993). Institutional care accounts for a large percentage of the total medical costs of caring for persons with AIDS (Hellinger, 1993): extending community-based care, therefore, promises to reduce substantially the total costs of AIDS care. Simply stated, informal caregivers provide free labour to our formal system of health care. However, the provision of informal care is not without cost: care demands often become overwhelming, placing extreme burdens on the caregiver. An extensive body of research on caregiving to elderly family members illustrates the financial, emotional and health-related burdens imposed by this type of care (Baumgarten, 1989; Schulz et al., 1990; Wright et al., 1993). Providing care to a person with AIDS may be especially taxing (Pearlin et al., 1988; Weitz, 1989; Guinan et al., 1991; Raveis and Siegel, 1991; Siegel and Krauss, 1991; Wardlaw, 1994). Most PWAs are relatively young, must deal with the stigma associated with HIV, homosexuality or drug use, and are vulnerable to unpredictable episodes of opportunistic infections. Additionally, many AIDS caregivers are themselves HIV-positive and face the same types of uncertainties and health risks. Community support services may be crucial in enabling caregivers to continue to provide home care under these taxing circumstances.

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63

METHODS Data were obtained from personal interviews conducted with primary caregivers to PWAs in two sites: San Francisco and Los Angeles. These two metropolitan areas rank among the top three in the United States for cumulative numbers of AIDS cases (Centers for Disease Control and Prevention, 1994). Interviews were conducted by lay persons selected and trained specifically for this data collection. Caregivers typically were interviewed in their homes; interviews lasted 1.5-2 hours. Each caregiver was paid $25 upon completion of the interview. Measurement The structured interview contained questions about service use by both the PWA and the caregiver along with aspects of stress, coping and health (Pearlin et al, 1994). The content of the interview schedule was developed from two sources. First, qualititive, formative interviews were conducted with AIDS caregivers to identify key themes in caregiving and unique elements associated specifically with AIDS. These interviews were used to develop standardized measures that were extensively pilot-tested, revised and evaluated with regard to their psychometric properties. Second, measures to ascertain aspects of caregiving shared in common across various health conditions were adapted from similar research we have conducted with Alzheimer's caregivers (Pearlin el al, 1990). Data for this report were analysed during univariate descriptive analysis and logistic regression. Sample Recruitment A total of 472 caregivers were recruited through several channels. Most responded to mass-media announcements in newspapers, radio or television (32%), or to flyers or announcements from AIDS service agencies (32%). The remaining caregivers were recruited through doctors' offices, clinics, health fairs, gay pride festivals or other miscellaneous sources (36%). Given the potential biases of a self-selected sample of caregivers, we include method of recruitment as a variable in our analyses. Potential participants were screened for eligibility criteria. Both the caregiver and the PWA had to be adults. At enrolment, caregivers had to be currently providing the majority of assistance needed by a non-institutionalized individual with an HIV-related health problem. Only informal or non-professional caregivers were included, thus excluding 'buddies' or those providing paid health care. Some level of physical activity on the part of the caregiver was required: the exclusive provision of emotional support was not sufficient. Because of the episodic nature of opportunistic infections among PWAs, some caregivers were providing a great deal of hands-on help, while others were providing minimal assistance. Most caregivers excluded from the study had previously cared for a PWA who died, but were not doing so at present, or were not the primary caregiver.

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Table 5.1 Percentage distribution of sociodemographic characteristics (n = 472) Caregiver

PWA

13.8 43.8 42.4

10.8 48.9 40.3

88.6 11.4

98.7 1.3

78.4 8.7 7.0 5.9

78.4 5.9 11.2 4.5

83.0 6.0 11.0

91.8 6.2 1.9

3.8 13.1 32.4 28.8 21.9

6.4 19.3 30.7 26.5 17.1

62.3 37.7

14.8 85.2

33.1 53.2 13.7

°

58.3 41.7

b

Characteristic Age <30 30-39 40 + Gender Male Female Race/ethnicity Non-Hispanic White African American Hispanic Other Sexual orientation Gay Bisexual Heterosexual Education < High school High school High school + College College + Employment status Employed Not employed HIV status Positive Negative Unknown City of residence San Francisco Los Angeles a b

All PWAs are HIV positive. All PWA-caregiver pairs reside in the same city.

RESULTS The Sample Caregivers and PWAs are very similar (Table 5.1): most are young, male, nonHispanic white, gay or bisexual, and well educated. Caregivers are more likely than PWAs to be employed, but one in three are not employed. Also, a third of the caregivers are HIV positive (33.1%). Mean annual income in thousands of dollars is 26.1 for caregivers and 18.8 for PWAs. Over half of the PWAs have an official case manager. The nature of the relationship between the PWA and his or her caregiver forms an important context for understanding the types of supplemental

SUPPORT SERVICE USE

Table 5.2

65

Percentage distribution of support service use among PWAs and their caregivers

Caregiver emotional support Support group for caregivers Individual/group therapy At least one service PWA emotional support AIDS support group AIDS emotional support volunteer Individual/group therapy At least one service PWA practical support Practical support volunteer/buddy Delivered meals Food bank Emergency financial help Transportation service Housekeeping service At least one service

Current use %

95% Confidence Interval

15.9 30.5 38.1

12.6,19.2 26.4, 34.6 33.8, 42.4

21.8 22.0 28.6 45.8

18.1,25.5 18.3,25.7 24.5, 32.7 41.3,50.3

13.8 29.0 34.7 7.8 18.4 13.3 61.2

10.7,16.9 24.9,33.1 30.4, 39.0 5.4,10.2 14.9,21.9 10.2, 16.5 56.9, 65.5

assistance that might be required by either or both parties. Fifty per cent of the caregivers are the partner or lover of the PWA; 46% are a friend of the PWA; the remaining caregivers describe themselves as acquaintances or room-mates. Most of these caregivers live with the PWA (69%); the average length of their relationship is 7.6 years. The average PWA has been symptomatic for 2.5 years; caregivers have been assisting for an average of 1.8 years. Almost half (45%) of the caregivers are the sole provider of informal care. Service Use

For this analysis, 11 support services were grouped into three composite categories (Table 5.2): (1) emotional support services for caregivers; (2) emotional support services for PWAs; and (3) practical support services for PWAs. With regard to the latter, we note that practical support is oriented toward helping the PWA, yet it indirectly benefits the caregiver as well. Use of emotional support services by caregivers was measured by asking the caregiver about their use of either of two services since they began helping care for the PWA. Current use is reported here, as opposed to never using the service or past use only. Use of emotional and practical support services by PWAs was measured by asking the caregiver if the PWA had used any of nine services since he or she had been HIV symptomatic. Again, current use is reported here, as opposed to never using the service or past use only. Nearly four out of ten caregivers use an emotional support service. This rate far surpasses estimates for use of similar mental health services by the general population of United States adults (Shapiro et al., 1984). The use of individual or group therapy is twice that of caregiver-specific support groups, suggesting variation in need and/or availability.

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R. G. WIGHT et al.

PWAs use emotional support services at a somewhat higher overall rate than their caregivers (45.8%). However, this difference may be an artifact of asking about three rather than two services. These figures are perhaps not surprising given that PWAs are dealing directly with a life-threatening crisis, but again, these rates are very high when compared to the general population. Like their caregivers, PWAs are using individual or group therapy more often than AIDSspecific services. The use of practical support services by PWAs is also exceptionally high, exceeding the rates for emotional services. Delivered meals and food banks appear to be especially important forms of assistance. This rinding is consistent with previous research (Marazzi et al., 1994) and may reflect the importance of nutrition as a basic human need. Emergency financial help is not being utilized at a rate comparable to the other services, but this may well reflect the general lack in the availability of such help rather than an absence of need. Factors Related to Service Use

Four types of variables were employed in the analysis of whether a type of service was used: (1) characteristics of the PWA; (2) characteristics of the caregiver; (3) characteristics of their relationship; and (4) contextual factors (city residence and recruitment method). Table 5.3 presents the logistic regression results for each type of service use, along with the 95% confidence intervals and P-values for each coefficient. Four variables contribute to the caregiver's use of emotional support services, as seen in the left-hand column of Table 5.3 (Somer's D = 0.33). Caregivers who are HIV-positive are more likely to use services than those who are HIV-negative or who do not know their serostatus. Symptoms of nonspecific psychological distress (depression, anxiety, anger, and cognitive symptoms) are positively associated with service use as well. Caregivers who are highly educated are also more likely to use emotional support services. The likelihood of caregiver service use is reduced when the caregiver and PWA are co-residing as lovers versus other living arrangements. As is evident in the middle column of Table 5.3, few variables predict the use of emotional support services by PWAs. PWAs who have a case manager are more likely to use emotional support services than those who do not have a case manager. The link between case management and service use is fairly clear given that case managers typically direct PWAs to available services. This variable is not redundant with the dependent variable because some PWAs with case managers do not use these services (24.5%), while many who do not have a case manager do use emotional support services (18.9%). Like their caregivers, PWAs who are highly educated are also more likely to use emotional support services. The likelihood of this type of service use is reduced when the PWA, the caregiver, or both are minority group members. There remains considerable variation in service use to be explained, however, as reflected by a Somer's D of 0.26 for this model.

Table 5.3

Results of logistic regression analysis for use of support services Emotional support for caregiver (CG)

Practical support for PWA

Emotional support for PWA

Independent variables

Odds ratio

95% a

P

Odds ratio

95% Cl

P

Odds ratio

95% Cl

P

PWA poor health ( 1 = excellent, 5 = poor) No. PWA hospitalizations PWA depression ( 1 -4) Years PWA symptomatic Case manager (/no) CG psychological distress (1-4) CG poor health ( 1 = excellent, 5 = poor) CG HIV positive (/negative, unknown) CG-PWA agea CG-PWA education13 CG and/or PWA minority (/no)c Co-residing as lovers (/no) Combined income (thousands of dollars) Lives in Los Angeles (/San Francisco) Agency recruitment (/other)

0.79

0.62,1.02

0.07

0.86

0.67,1.10

0.22

1.00

0.77,1.30

0.98

0.99 1.10 0.99 1.49 1.17

0.89,1.10 0.81,1.50 0.90,1.10 0.98,2.28 1.06,1.29

0.83 0.52 0.85 0.06 <0.01

.05 .23 .01 .91 .00

0.95,1.15 0.91,1.68 0.91,1.11 1 .26,2.90 0.91,1.10

0.36 0.18 0.89 <0.01 0.95

1.26 1.02 1.01 1.79 0.99

1.12,1.42 0.72,1.43 0.90,1.13 1.14,2.80 0.89,1.10

<0.01 0.92 0.90 0.01 0.89

0.86

0.68,1.09

0.21

0.92

0.73,1.16

0.48

1.12

0.86,1.45

0.41

2.10

1.31,3.36

<0.01

1.05

0.66,1.65

0.85

1.67

1 .00,2.79

<0.05

1.01 1.13 0.95 0.60 1.00

1.00,1.01 1.02,1.25 0.62,1.47 0.39,0.91 0.99,1.01

0.61 0.02 0.83 0.02 0.58

0.99 1.10 0.64 0.90 1.00

0.96,1.02 1.01,1.21 0.42,0.97 0.60,1.37 0.99,1.01

0.42 0.04 0.04 0.63 0.83

1.01 0.92 0.77 0.60 0.99

0.98,1.04 0.83,1.02 0.49,1.23 0.38,0.95 0.98,1.00

0.63 0.10 0.28 0.03 0.01

0.98

0.64,1.51

0.94

0.94

0.62,1.44

0.79

1.05

0.65,1.67

0.85

0.92

0.58,1.45

0.71

0.89

0.57,1.39

0.60

2.38

1 .43,3.95

<0.01

°b For emotional support for caregiver, caregiver's age entered; for emotional and practical support for PWA, PWA's age entered. For emotional support for caregiver, caregiver's education entered; for emotional and practical support for PWA, PWAs's education entered. c Either PWA or caregiver are not non-Hispanic white.

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R. G. WIGHT et al.

Table 5.4

Unmet need and barriers to use for PWA services

% PWA emotional support AIDS support group AIDS emotional support volunteer Individual/group therapy PWA practical support Practical support volunteer/buddy Delivered meals Food bank Emergency financial help Transportation service Housekeeping service

Unmet need0

95% a

Primary barrierb

33.5 40.3 33.3

29.2,37.8 35.8,44.8 29.0,37.6

PWA unwilling to use PWA unwilling to use PWA unwilling to use

40.1 21.6 12.5 27.8 35.4 42.2

36.4,45.4 17.9,25.3 9.6,15.4 23.7,31.9 31.1,39.7 37.7,46.7

PWA unwilling to use Needs not pressing enough Didn't know it existed Didn't know how to access Didn't know it existed Service too expensive

° % of total sample where PWA not using service, but caregiver thought it would have been helpful. b In cases of unmet need, most frequently cited reason for non-use of service.

As shown in the right-hand column of Table 5.3, the use of practical support services for PWAs is associated significantly with several variables (Somer's D = 0.51). Frequent hospitalizations for the PWA is a strong predictor of the use of these services, probably indicating heightened need as the PWA's health deteriorates. Practical support services are likely to be used when the caregiver is HIV-positive, when the caregiver and PWA have low incomes, and when the caregiver and PWA are not co-residing as lovers. If the caregiver was recruited into the study through an AIDS service organization, the likelihood of practical support service use rises, as would be expected. This effect is primarily accounted for by two specific services: delivered meals and food banks. When the composite measure of practical support is disaggregated, agency recruitment emerges as a significant predictor for only these two services. Aside from recruitment, the predictors of use for these two services are comparable to those predicting our composite dependent variable. Unmet Need Unmet need for AIDS service has been identified as a public health problem in other HIV-affected samples where at least 40% reported a lack of various needed services (Piette et al., 1993). Unmet need in our study was measured by asking the caregiver if he or she thought a service not being used by the PWA would have been helpful. Thus, unmet need refers only to services for the PWA, not to services for the caregiver. Given the relatively high rates of PWA support service use, unmet need might be expected to be minimal. However, our data reveal substantial unmet need for PWA support services, at least as caregivers perceive the needs of those for whom they provide care (Table 5.4). Rates of unmet need exceed rates of actual service use for almost all of the services listed (refer to Table 5.2). Perceptions of unmet need for emotional support may indicate that caregivers

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69

feel inadequate at providing emotional support, or feel very drained by it and desire relief. Reported gaps in the needs for practical support may be due to the fact that practical support volunteers, transportation services, housekeeping services and the like can ease some of the demands placed on the caregiver. Perceptions of unmet need for delivered meals and food banks are not as pronounced in our sample. High rates for unmet need indicate the existence of certain barriers to service use. Caregivers who thought that unused services would have been helpful were asked why the service was not used. The most frequently cited reasons for not using each service are shown in the right-hand column of Table 5.4. Access problems and financial obstacles are mentioned far less frequently than the PWA's unwillingness to use services, suggesting that attitudinal or motivational factors present formidable barriers to service use. In particular, there appears to be substantial disagreement between the caregiver and the PWA in relation to seeking outside help, especially for emotional support services: many PWAs were reportedly unwilling to seek therapy or counselling. Access to services which provide emergency financial help is apparently limited and housekeeping services are not affordable.

DISCUSSION Service Use Overall there is a high rate of service use among PWAs and caregivers in our sample. In addition to the patterns of current use just described, 93% of the PWAs had used at least one emotional or practical support service since becoming HIV symptomatic. We anticipated that service use in this sample might be limited precisely because these PWAs have primary caregivers: if caregivers are providing many of these services, we reasoned, then the use of formal services should be curtailed. In the light of the rates reported here, it can be concluded that PWAs have substantial service needs even when being assisted by an informal caregiver. The high rate of use may be partially accounted for by the presence of case managers. Fifty-two per cent of the PWAs have an official case manager. As has been discussed elsewhere (Benjamin, 1988; Layzell and McCarthy, 1992; Widman et «/., 1994), case managers increase the utilization of support services. In addition, if the caregiver is viewed as an informal case manager of sorts, the combined 'case management' effect on service use is readily apparent. Unmet Need Even with the high levels of service use demonstrated here, unmet need for PWA services, as perceived by the caregiver, is quite substantial. This appraisal may mean that additional services would be helpful, but more so for the caregiver

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R. G. WIGHT et al.

than for the PWA. Increased practical support provided by agencies would alleviate at least some of the physical tasks of caregiving, such as cooking, driving or housecleaning. Similarly, use of PWA emotional support services might lessen some of the responsibility caregivers feel for the PWA's emotional well-being. It would be too simplistic, however, to suggest that a change in the attitude of the PWA would lead to an increase in service use, a decrease in perceived unmet need on the part of the caregiver, and an enhancement of care provision. Rather than blaming the PWA for not wanting to use services, the services themselves should be examined to determine what it is about the services that makes the PWA unwilling to use them. Such services are presumably created to help PWAs and, therefore, should cater to the PWA's needs and hesitancies. Clearly, there is great value in future research which examines why PWAs are unwilling to utilize certain types of support services as well as why they find others desirable or satisfactory. Factors Related to Service Use

The HIV status of the caregiver is influencing service use across two of the categories we examine (caregiver emotional support and PWA practical support). There is a potential for overlap between the care-provider and care-receiver roles in this context. Many of the HIV-positive caregivers in our sample report that they are sometimes receiving assistance because of AIDS-related health problems, often from the PWA to whom they provide care. Thus, the caregiver and PWA roles may be switched at times, depending on who is in the best health. A caregiver who is also a PWA is certain to experience tremendous stress (both emotional and physical), but at the same time the dual roles seem to generate an increase in service use. HIV-positive caregivers may have an 'inside track' on the available services because of their own use of such services or because they themselves may have a case manager. Of course, support services may also be strongly relied upon because the HIV-positive caregiver simply cannot perform many physically draining tasks. Health problems may also force HIV-positive caregivers and PWAs out of the workplace at a time when they are incurring heavy medical expenses. Financial burden thus increases the need for free services such as delivered meals or food banks. When the caregiver and PWA live together as partners or lovers, the use of caregiver emotional support services and of PWA practical support services is less than when they live together under other circumstances or live apart. It may be that partners or lovers are more likely to provide the practical support that other PWAs receive from service agencies. This, in turn, may lead to time constraints which make it difficult for the caregiver to seek emotional support. It is also possible that both partners are hesitant to seek help beyond the boundaries of an intimate relationship. PWAs are less likely to use emotional support services when either the PWA or the caregiver are African American, Hispanic, or members of other ethnic

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71

minority groups. Non-Hispanic white PWAs may be targeted more aggressively for this type of support in the United States or may respond more readily to outreach techniques. Alternatively, available emotional support services may not be sufficiently culturally sensitive, deterring use by members of ethnic minorities. The relative lack of association between the PWAs' overall health status and service use may indicate that use is more a matter of knowing how to access services than a matter of need. Otherwise it would seem that PWAs who are depressed, who are rated in poor health, and who have been HIV symptomatic for long periods of time would be most likely to utilize emotional and practical support services. The general absence of such a finding in these data may also indicate that the sickest PWAs find themselves in institutional care. Alternatively, the need for support services may be independent of these health variables because the PWA's health fluctuates. PWAs who experience many ups and downs in their health do not regularly require high levels of assistance, meaning that the need for support services may be sporadic.

CONCLUDING COMMENTS The universe of AIDS caregivers is not defined and we do not assume that the caregivers in our sample fairly represent all caregivers. This is especially true because our sample is made up largely of well educated, white, gay or bisexual men, typical of what Turner et al. (1994) identify as AIDS caregivers living in central cities. For example, given the important role that education plays in predicting service use, we would expect to find rates of service use to be lower in less educated groups of PWAs and caregivers. We might expect to find lower rates of service use among caregivers who are traditional family members (mothers, siblings, heterosexual wives), because these individuals are less likely to be HIV-positive. Caregivers and PWAs in our sample appear to represent a clearly defined segment of the AIDS-affected community in the United States that is likely to be targeted by AIDS service agencies. They are also derived from San Francisco and Los Angeles, geographic areas which were early innovators in the development of AIDS services (Silverman, 1988). Rates of service use are likely to vary in areas where the community-based response is developed to a greater or lesser extent. Additionally, it is important to note that our findings cannot be generalized to developing countries, where HIV infection patterns, service availability and cultural norms differ from those of the United States and other developed countries (Schopper and Walley, 1992). Still we do not want to minimize the finding that PWAs and their caregivers, even in AIDS epicentres such as Los Angeles and San Francisco where AIDS service systems are relatively well developed, appear to have high rates of unmet need. Thus, it is not likely that resources directed to AIDS support agencies are duplicative or unnecessary in most populations. Rather, it seems that much more support would be readily absorbed. In closing, we feel that the importance of support services for caregivers cannot

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R. G. WIGHT et al.

be overstated, particularly in the light of our growing understanding of the varied and far-reaching consequences of the caregiving role. Although much of that understanding has been garnered from research on caregivers to the frail elderly (Aneshensel et al., 1995), emerging research on AIDS caregivers is beginning fully to explore their unique needs and vulnerabilities (LeBlanc et al., 1995). Future examinations of caregivers who are parents, siblings, and other traditional family members will help us gain a broader understanding of the types of support needed by HIV-affected communities.

REFERENCES Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H. and Whitlach, C. J. (1995) Profiles in Caregiving: The Unexpected Career (San Diego, CA, Academic Press). Arno, P. S. (1986) The nonprofit sector's response to the AIDS epidemic: community-based services in San Francisco. American Journal of Public Health, 76, pp. 1325-1330. Baumgarten, M. (1989) The health of persons giving care to the demented elderly: a critical review of the literature. Journal of Clinical Epidemiology, 42, pp. 1137-1148. Benjamin, A. E. (1988) Long-term care and AIDS: perspectives from experience with the elderly. The Milbank Quarterly, 66, pp. 415-443. Benjamin, A. E. (1989) Perspectives on a continuum of care for persons with HIV illnesses. Medical Care Review, 46, pp. 411-437. Brody, E. M. (1985) Parent care as a normative family stress. The Gerontologist, 25, pp. 19-29. Butters, E., Higginson, L, George, R. and McCarthy, M. (1993) Palliative care for people with HIV/ AIDS: views of patients, carers and providers. AIDS Care, 5, pp. 105-116. Centers for Disease Control and Prevention (1994) HIV/AIDS Surveillance Report, 6, pp. 6-7. Guinan, J. J., McCallum, L. W., Painter, L., Dykes, J. and Gold, J. (1991) Stressors and rewards of being an AIDS emotional-support volunteer: a scale for use by care-givers for people with AIDS. AIDS Care, 3, pp. 137-150. Hellinger, F. J. (1993) The lifetime cost of treating a person with HIV. Journal of the American Medical Association, 270, pp. 474-478. Katoff, L. (1992) Community-based services for people with AIDS. Primary Care, 19, pp. 231-243. Kelly, J. J., Che, S. Y. and Buehler, J. W. (1993) AIDS deaths shift from hospital to home. American Journal of Public Health, 83, pp. 1433-1437. Layzell, S. and McCarthy, M. (1992) Community-based health services for people with HIV/AIDS: a review from a health service perspective. AIDS Care, 4, pp. 203-215. LeBlanc, A. J., Aneshensel, C. S. and Wight, R. G. (1995) Psychotherapy use and depression among AIDS caregivers. Journal of Community Psychology, 23 (2), pp. 127-42. Marazzi, M. C., Palombi, L., Mancinelli, S., Liotta, G. and Pana, A. (1994) Care requirements of people with ARC/AIDS in Rome: non-hospital services. AIDS Care, 6, pp. 95-104. McCann, K. (1990) Care in the community and by the community. AIDS Care, 2, pp. 421-424. McCann, K. and Wadsworth, E. (1992) The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs? AIDS Care, 4, pp. 25-34. McCormick, W. C., Hopkins, S. G., Wood, R. W., Wood, C. D., Deyo, R. A. and Inui, T. S. (1993) The Seattle appropriate level of care survey: health status and health service use in ambulatory persons with AIDS. AIDS Care, 5, pp. 369-378.

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McGuire, J. F. (1989) AIDS: the community-based response. AIDS, 3, pp. S279-282. Pearlin, L. I., Semple, S. and Turner, H. (1988) Stress of AIDS caregiving: a preliminary overview of the issues. Death Studies, 12, pp. 501-517. Pearlin, L. I., Mullan, J. T., Semple, S. J. and Skaff, M. M. (1990) Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist, 30, pp. 583—594. Pearlin, L. I., Mullan, J. T., Aneshensel, C. S., Wardlaw, L. and Harrington, C. (1994) The structure and functions of AIDS caregiving relationships. Psychosocial Rehabilitation Journal, 17, pp. 51-67. Piette, J. D., Fleishman, J. A., Stein, M. D., Mor, V. and Mayer, K. (1993) Perceived needs and unmet needs for formal services among people with HIV disease. Journal of Community Health, 18, pp. 11—23. Ravels, V. H. and Siegel, K. (1991) The impact of caregiving on informal and familial caregivers. AIDS Patient Care, February, pp. 39-43. Schopper, D. and Walley, J. (1992) Care for AIDS patients in developing countries: a review. AIDS Care, 4, pp. 89-102. Schulz, R., Visintainer, P. and Williamson, G. M. (1990) Psychiatric and physical morbidity effects of caregiving. Journal of Gerontology: Psychological Sciences, 45, pp. 181-191. Shapiro, S., Skinner, E. A., Kessler, L. G. and Von Korff, M. (1984) Utilization of health and mental health services. Archives of General Psychiatry, 41, pp. 971-978. Siegel, K. and Krauss, B. J. (1991) Living with HIV infection: adaptive tasks of seropositive gay men. Journal of Health and Social Behavior, 32, pp. 17-32. Silverman, M. (1988) AIDS care: the San Francisco model. Journal of Ambulatory Care Management, 11, pp. 14-18. Turner, H. A., Catania, J. A. and Gagnon, J. (1994) The prevalence of informal caregiving to persons with AIDS in the United States: caregiver characteristics and their implications. Social Science and Medicine, 38, pp. 1543-1552. Wardlaw, L. (1994) Sustaining informal caregivers for persons with AIDS. Families in Society: the Journal of Contemporary Human Services, June, pp. 373-384. Weitz, R. (1989) Uncertainty and the lives of persons with AIDS. Journal of Health and Social Behavior, 30, pp. 270-281. Widman, M., Light, D. W. and Platt, J. J. (1994) Barriers to out-of-hospital care for AIDS patients. AIDS Care, 6, pp. 59-67. Wright, L. K., Clipp, E. C. and George, L. K. (1993) Health consequences of caregiver stress. Medicine, Exercise, Nutrition and Health, 2, pp. 181-195.

SIX

Carers' Burden and Adjustment to HIV Kenneth I. Pakenham, Mark R. Dadds and Debra J. Terry

INTRODUCTION Caring for a chronically ill person is generally viewed as a stressful task. The chronic distress associated with caregiving has been linked to negative psychological and immunological changes in carers (e.g., Kennedy et al., 1988). However, empirical evidence from well designed studies into the effects on carers of caring for a person with HIV is lacking. The present study contributes to the growing body of research designed to explore the impact on carers1 of caring for a loved one with HIV. The physical, emotional, instrumental and social problems associated with caregiving are typically referred to as caregiver burden. Recently, the term burden has been used to refer to carers' subjective perceptions of the extent of problems experienced in relation to caregiving (e.g., Braithwaite, 1990). Burden has been conceptualized as an interactive, rather than an individualistic variable (Dadds et al., 1985; Braithwaite, 1990). In this respect, burden may be regarded as stemming from the conflict between the demands of the patient and the needs of the carer (Braithwaite, 1990). Burden in the present study is conceptualized as a subjective and interactive phenomenon. Although the growing move towards the community-based management of HIV-infected persons means that the needs of the carer are likely to assume a greater priority, there is nevertheless limited knowledge of the impact of HIV on carers. Some descriptive studies on the effect of caring for a person with AIDS have been published; however, empirical validation of findings from these studies is needed. Descriptive accounts of the burden of carers have included discussions of the psychosocial needs of significant others by researchers and clinicians (e.g., Furstenburg and Olsen, 1984; Christ et al., 1986; Lippmann et al., 1993), surveys of carers' needs (McMcann and Wadsworth, 1992), first-hand reports by carers

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75

(Peabody, 1986), studies based on retrospective interviews with carers after the death of AIDS patients (Geiss et al., 1986), and documented psychiatric consultations with family members of AIDS patients (Frierson et al., 1987). These descriptive accounts have demonstrated that some carers experience trauma and difficulty after a loved one has been diagnosed as having AIDS (Frierson et al., 1987). Despite the fact that there has been such research on the burden of carers of persons with HIV, these studies have suffered from small sample sizes and other sampling problems. Furthermore, they have largely restricted their investigation of carers to those caring for people with AIDS. The present study examines the nature of burden (using a problem specification approach; see Turk, 1979) experienced by carers of persons with HIV across the disease continuum. There has also been a lack of research that has investigated a range of different predictors of burden. The present study investigates the relationships between carers' level of burden and adjustment and several different factors including demographic variables, characteristics of the caregiving relationship, patients' illness stage, patients' health status and HIV-related problems, and carers' coping strategies. Each of these variables is briefly discussed below. Of the many demographic variables explored in relation to caregiving, the effects of gender are most marked. In general, women report higher caregiving burden than men and there is a tendency for care to be provided to members of the opposite sex (Gilhooly, 1984; Fitting et al., 1986). However, given that in Australia the majority of those affected by HIV are gay/bisexual males, there are likely to be more men involved in providing care to infected persons and, hence, more same-sex carer-patient dyads than in other chronic illness areas. Characteristics associated with the caregiving relationship have also been examined as determinants of carers' adjustment. Several studies report significant differences in the way carers respond depending on their familial relationship with the patient (Cantor, 1983). The general finding is a negative correlation between the 'distance' in the blood/role relationship and the mental health of the carer (i.e. the greater the familial distance, the better the carer's mental health) (Cantor, 1983; Gilhooly, 1984; George and Gwyther, 1986). The finding has been explained in terms of the degree of emotional and practical involvement of the caregiver (Gilhooly, 1984). However, the role relationship is often confounded with living arrangement. The relationship between characteristics of the patient and carers' level of burden has also been investigated. Studies have attempted to identify aspects of the patients' medical condition that may be linked to carers' distress. Most studies in the dementia field have found nonsignificant or weak associations between the patients' condition (e.g. illness duration, severity of symptoms) and carers' burden (e.g. Gilhooly, 1984; Eagles et al., 1987). However, other studies have found that carers' perceptions of the severity of dementia are correlated with distress in female carers but not in male carers (Fitting, et al., 1986), although Braithwaite (1990) found that carers' perceptions of emotional and

76

K. I. PAKENHAM ef a/.

cognitive impairment in the patient predicted burden and minor psychiatric symptoms in carers (both male and female). Other important areas of patient functioning that may impact on carers' adjustment are patients' level of adjustment, their perceptions of their physical health, and the number of illnessrelated problems they are experiencing. It is reasonable to expect that the more poorly a patient functions in these areas the more burden and lower levels of adjustment his/her carer is likely to experience. Stage of HIV appears to be a significant determinant of psychological adjustment among HIV-infected gay men (Pakenham et al., 1994). The stage of a patient's illness - that is, whether he/she is HIV asymptomatic or symptomatic - is also likely to be an important variable that might influence the carer's level of burden and adjustment. It would be reasonable to expect that caring for someone who is symptomatic will be more burdensome than caring for an asymptomatic person, given that symptomatic patients have more HIV-related problems, poorer levels of adjustment and subjective health than asymptomatic patients (Pakenham et al., 1994). According to the stress and coping paradigm, one variable that is likely to mediate between the impact of caregiving and psychological adjustment is the carer's coping style (Lazarus and Folkman, 1984). The importance of carers adopting appropriate coping strategies has been frequently demonstrated, particularly in the dementia area (e.g. Pagel et al., 1985; Morris et al., 1989); however, there have been few direct attempts to investigate their association with carers' psychological adjustment. In the wider stress literature, there is a tendency for problem-focused strategies to be associated with low distress and emotionfocused strategies to be linked to high distress (Revension and Felton, 1989; Vitaliano et al., 1989). Studies that have examined the coping strategies of carers have reported results that are consistent with these proposals (Pratt et al., 1985; Braithwaite, 1990). In general, studies examining the impact of chronic illness on the marital unit have found that not only the patient but also his/her partner experiences a range of psychological problems. Generally, patients are more distressed than their partners, but there is a close correlation between their own and their partners' level of distress (Block and Boyer, 1984; Soskolne and Kaplan De-Nour, 1989). A plausible explanation for this pattern of results is that patients and carers achieve a similar level of adjustment, because of the mobilization of complementary or similar types of coping strategies (e.g. Soskolne and Kaplan De-Nour, 1989). These data suggest that a reciprocal determinism approach may be useful in understanding how both patient and carer adjust to illness. Within such a model the patient and his/her illness impact on the carer and the carer's response in turn impacts on the patient (Turk and Kerns, 1985). After reviewing the literature we found no published studies that had investigated whether such results are evident in the responses of gay couples to illness in one member of the couple, which is relevant to the HIV area, given that many carers of persons with HIV may be their gay partners. An added complication in the care of an

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77

HIV-infected partner is the fact that the non-infected partner may be at some risk of acquiring the disease him- or herself. The present study, therefore, explores the utility of the reciprocal determinism model in understanding patient and carer adjustment to HIV. In summary, the aims of this study were, first, to examine the relationships between carers' burden and adjustment and the following factors: demographic variables, characteristics of the caregiving relationship, patients' stage of illness, patients' health status and HIV-related problems, and carers' coping strategies. With respect to the relationship between carers' adjustment and burden and patients' stage of HIV, it was predicted that carers of HIV-symptomatic persons would show higher levels of burden and poorer adjustment than those caring for asymptomatic persons. Regarding the association between carers' burden and adjustment and patients' health status and HIV-related problems, it was predicted that patient health status and number of HIV-related problems would be positively related to carers' burden and adjustment. With respect to the relationship between carers' burden and adjustement and carers' coping strategies, it was predicted that a preference for problem-focused coping would be related to higher levels of adjustment and lower levels of burden, whereas emotion-focused coping strategies were proposed to be related to poorer levels of adjustment and higher levels of burden. Second, the study explored the utility of the reciprocal determinism model by investigating the differences and similarities in adjustment between patients and carers within patient-carer dyads on the same set of adjustment variables. It was predicted that patients would report lower levels of adjustment than carers and that carers' and patients' scores on all adjustment domains would be positively correlated. METHOD Participants A total of 34 carers and 30 patients were interviewed. One carer per infected person was interviewed for 30 infected persons, and two carers (both parents) per infected person were interviewed for two infected persons.2 Recruitment was achieved via advertising in the gay and HIV community's media outlets within Queensland as part of the first Commonwealth Government-funded HIV/ AIDS needs-assessment study in Australia (Pakenham, 1990). A total of 40 patient-carer dyads were approached. Table 6.1 summarizes the characteristics of the carers and their patients. The sample of carers was fairly evenly divided between females and males. All patients identified themselves as gay. The median age range for carers was 33 to 44 years and for the patients it was 35 to 39 years. Just under half (n = 14) were family members, 7 were friends, and 13 were partners. The median length of time for caring was 6 months to 1 year. Most carers (n — 29) were in daily contact by phone and/or in person with the patient,

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Table 6.1 Characteristics of carers (n = 34) and their HIV-infected patients (n = 30) expressed as percentages Carer

%

n

%

n

Sex Male Female

53 47

(18) (16)

100 0

(30)

Geographical location State capital Regional cities

47 53

(16) (18)

47 (53)

(14) (16)

(0)

Age 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69

0 6 6 9 18 18 12 3 12 9 9

(0) (2) (2) (3) (6) (6) (4) (1) (4) (3) (3)

3 13 17 23 30 7 7 0 0 0 0

(1) (4) (5) (7) (9) (2) (2) (0) (0) (0) (0)

Occupation Managers/admin. Professionals Paraprofessionals Trades persons Clerks Sales/service Plant operators Labourers

18 21 6 9 15 12 6 15

(6) (7) (2) (3) (5) (4) (2) (5)

13 13 7 17 17 13 3 17

(4) (4) (2) (5) (5) (4) (1) (5)

Religious affiliation Protestant Roman Catholic Other religion Nil religion

18 27 3 53

(6) (9) (1) (18)

Carer

Patient

23 27 3 47

(7) (8) (1)

Patient

%

n

%

n

Marital status Never married Married Divorced Separated

47 44 0 9

(16) (15) (0) (3)

87 0 13 0

(26) (0) (4) (0)

Highest education level Primary Secondary Year 1 0 Secondary Year 1 2 Tertiary Trade

32 24 9 32 3

(11) (8) (3) (11) (1)

27 27 10 20 17

(8) (8) (3) (6) (5)

Employment status Self-employed Employed full-time Employed part-time Unemployed Retired Disabled

9 32 9 15 21 6

(3) (11) (3) (5) (7) (2)

13 10 7 17 0 53

(4) (3) (2) (5) (0) (16)

Relationship with patient Partner Mother Father Sister Friend Relative

38 21 9 9 21 3

(13) (7) (3) (3) (7) (1)

Duration of caring < 6 months 6 months to < 1 year 1 year to < 2 years 2 years to < 3 years 3 years to < 4 years

21 32 21 21 6

(7) (11) (7) (7) (2)

(14)

4 had contact 2-4 times per week and one carer had contact once per week. The majority (n = 24) of carers lived with the patient. Half were in fulltime employment and, of those not employed fulltime, two indicated that they were unable to work because they were caring for their HIV-infected loved one. All carers and patients were of European origin. Twenty-six patients were symptomatic (Centers for Disease Control [CDC], 1987; HIV Classification Group III and IV) and 8 were asymptomatic (CDC Group II).

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79

Measures INTERVIEW SCHEDULES

The interview schedule used for the carers was identical to the one given to persons with HIV. For persons with HIV, interview questions were related to their being HIV-infected, and for carers, questions were related to their caregiving role. The schedule included a problem checklist, and a biographical section eliciting general demographic information, details of patients' history of HIV testing and global health, and carers' caregiving role. PROBLEM CHECKLISTS

Two problems checklists were developed; one for carers and another for patients. Validation of the Problem Checklists was conducted by having HIV/AIDS service providers and persons with HIV rate, from their perspective, the importance of each problem area for investigation; only items rated as important by the majority were retained. The items and format of both the carer's and patient's Problem Checklists were similar. The Carer's Problem Checklist (Carer's PC) consisted of 28 items and the Patient's Problem Checklist (Patient's PC) consisted of 29 items.3 Examples of the items included service difficulties, grief, isolation, transport difficulties, and religious difficulties. The methods of administering both Problem Checklists were identical. For each item, interviewees indicated ('yes' or 'no') whether a particular problem had been experienced in the last month. People with HIV were asked to endorse those problems associated with being HIV-infected, while the carers were required to endorse problems they had experienced associated with their caregiving role. The Problem Checklists were scored by summing the number of problems that were endorsed by respondents. The sample size for carers precluded the use of a factor analysis to explore the structure of the Carer's PC. Instead, the Carer's PC was submitted to a post hoc reliability analysis that yielded a Cronbach's alpha of 0.75. Hence, for the purposes of the present study, the Carer's PC total score was used as an overall measure of burden. Scores ranged from 1 to 16 with a mean of 8.71 (s.d. = 4.26). The most widely endorsed items (by more than a third) were distressing emotions (n = 31), relationship difficulties (n = 23), somatic symptoms (n = 18), grief (n = 17), confidentiality concerns (n = 16), death concerns (n = 15), lack of respite from caring (n = 14), anxiety (n = 14), isolation (n = 13), depression (n = 12), healthcare system concerns (n = 12), and acceptance of patient's HIV status (n — 12). Previous research with the Patient's PC, using a larger sample of persons with HIV, showed that it can be used as a total score (Cronbach's alpha = 0.70) or as two dimensions: emotional, spiritual and psychological discomfort, labelled the Emotional and Existential Concerns Scale (Cronbach's alpha = 0.71); and instrumental difficulties associated with a decline in physical health, called the Instrumental Concerns Scale (Cronbach's alpha = 0.80) (Pakenham et al., 1994).

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BRIEF SYMPTOM INVENTORY (BSI)

The 53-item BSI is a self-report symptom scale that measures nine primary symptom dimensions: somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation and psychoticism (Derogatis and Spencer, 1982). The BSI was completed by each participant at the end of the interview. Two global distress scores were derived from the BSI, the General Severity Index (GSI) and the BSI total score. The GSI score, which includes the somatization subscale, was used in analyses of the carer's data. For the patients, the BSI total score excluded the somatization subscale, because it was considered to be confounded with their HIV-illness symptoms. This score was used when comparing carers with patients. PSYCHOSOCIAL ADJUSTMENT TO ILLNESS SCALE - SELF-REPORT (PAIS-SR) The PAIS-SR assesses a patient's psychosocial adjustment to a current medical condition or its residual effects (Derogatis and Lopez, 1983). This 45-item selfreport scale consists of seven subscales developed specifically to measure the impact of physical illness on the behaviour of the patient across different domains, including: health care orientation, vocational environment, domestic environment, sexual relationships, extended family relationships, social environment, and psychological distress. This instrument has been validated and used extensively to assess life adaptation in numerous chronic illnesses (e.g., Baider and Kaplan De-Nour, 1984). With minor alterations, the PAIS-SR may be used to measure the quality of carers' adjustment to a patient's illness (Derogatis and Lopez, 1983). In the present study, the questionnaire was rephrased to enquire about the extent to which the patient's HIV infection had interfered with the carer's functioning in the seven domains assessed by the PAIS-SR. The questionnaire has been shown to have high reliability in samples of both carers and patients across a range of samples (e.g., Baider and Kaplan De-Nour, 1988; Soskolne and Kaplan De-Nour, 1989). The psychological distress subscale was excluded because of overlap between items on this subscale and the BSI. A total PAIS-SR score was computed by summing across the other six subscales, which measured social adjustment to illness for patients and measured social adjustment to the patient's illness and caregiving for carers. Higher scores indicated poorer adjustment. THE COPING STRATEGIES DEVICE

Carers' coping strategies were assessed using the Coping Strategies Device (Viney and Westbrook, 1982). It is made up of six clusters of coping strategies, each of which was presented to respondents on a separate card. Respondents were asked to rank the strategies from the one which they were most likely to use to the one which they were least likely to use. The coping strategies device was presented at the end of the interview, and was defined as referring to their caring for their patient. The six clusters of coping strategies were: action strategies (e.g., 'I try to find out the cause of my problem'), control strategies (e.g., 'I control my feelings'), escape strategies (e.g., 'I become involved in other activities to keep my mind off

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81

things), fatalism strategies (e.g., 'I am prepared to expect the worst'), optimism strategies (e.g., 'Things usually work out fine'), and interpersonal coping (e.g., 'I talk with friends about the problem'). The optimism, fatalism, escape, and control coping strategies can be regarded as emotion-focused coping strategies, as they involve diverting attention from the realities at hand and focus on dealing with associated emotional distress. Action and interpersonal coping strategies are more directed at problem solving or doing something to alter the source of the stress. Multidimensional scaling with a normative sample was used to derive the sixdimensional structure (Westbrook, 1979), which has been independently replicated by another sample (Beattie and Viney, 1981). Its dimensions are similar to those of other self-appraisal measures of coping (e.g. Folkman and Lazarus, 1980). The reliability of the coping strategies device over time has varied from moderate over a period of a month (with a reliability coefficient of 0.70) to high (0.90) over a period of a day (Viney and Westbrook, 1982). The validity of the measure is satisfactory. For example, it has been shown to discriminate between physically ill patients and non-patients (Viney and Westbrook, 1984). PATIENT HEALTH-STATUS INDICES Two patient health-status measures were used: a global health rating and the number of physical symptoms. As a global rating of health, patients rated their current physical health status on a 5-point rating scale: (1) 'excellent' to (5) 'extremely poor'. Participants were asked if they had HIV-related symptoms and, if so, they were asked to identify the physical symptoms. From this information a measure of the number of physical symptoms reported was derived. Symptoms which could be considered depressive symptoms (e.g., fatigue, loss of sleep, weight loss) were excluded from the measure. The two physical health indices were validated using a sample of 95 patients by showing that both measures correlated significantly with their CDC HIV classification (Pakenham et al., 1994). Summary of Measures Carers' measures included the BSI (BSI total score and GSI) PAIS-SR total score, Carer's PC total and coping strategies. Patients' measures included BSI total score, PAIS-SR total score, Patient's PC total score, Instrument Concerns Scale score, Emotional and Existential Concerns Scale score, number of symptoms, and global health rating. These patient measures were used as dependent variables in analyses comparing patients and carers, and as independent variables when used in analyses to explore the relationship between patient characteristics and carers' adjustment and burden. Three of the carers' measures were used as dependent variables, the BSI and PAIS-SR (adjustment indices) and the Carer's PC (burden). Independent variables included: demographic variables (carer's sex, age and education), characteristics of the caregiving relationship (duration of caring, living arrangement, and type of relationship), patient's illness stage (asymptomatic and

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K. I. PAKENHAM et al.

symptomatic), patient's health status (number of symptoms and global health rating), patient's HIV-related problems (Instrumental Concerns and Emotional and Existential Concerns), and carers' coping strategies.

RESULTS Given the small sample size, a strict Bonferonni adjusted alpha was not used; instead the alpha was set at P < 0.01. Demographic Variables as Determinants of Carers' Adjustment To explore the impact of demographic variables on carers' adjustment and burden, ANOVAs were conducted to test for differences on the dependent variables (GSI, PAIS-SR total, and Carer's PC total) using the following demographic characteristics as independent variables: sex, age, and education.4 There were no significant differences on the dependent variables as a function of these variables. Characteristics of the Caregiving Relationship as Determinants of Carers' Adjustment and Burden In order to examine the effect of characteristics of the caregiving relationship on levels of adjustment and burden, ANOVAs were used to test for differences on the dependent variables (GSI, PAIS-SR total and Carer's PC total) using the following characteristics of the caregiving relationship as independent variables: duration of caring, carers' living arrangement with the patient, and the nature of the relationship between carer and patient (e.g. partner, family, friend). None of the caregiving characteristics was significantly related to any of the dependent variables, apart from the carers' living arrangement with the patient, which approached significance. Carers who lived with the patient (M = 9.67, s.d. = 4.44) reported markedly more burden (/\1,32) = 4.60, P < 0.05) than those who did not live with patient (M = 6.40, s.d. = 2.80). Patients' Illness Stage as a Determinant of Carers' Adjustment and Burden In order to determine whether carers' adjustment or burden varied as a function of the patient's illness stage as predicted, an ANOVA was performed to test for differences on the dependent variables between carers who supported an asymptomatic patient and those who cared for a symptomatic patient. Results indicated that whether a carer was caring for a symptomatic or asymptomatic patient was not significantly related to carers' adjustment or burden. Correlations Between Patient Health and HIV-Related Problems and Carer Adjustment and Burden In order to explore the relationship between patient health and HIV-related problems and carers' adjustment and burden, correlations between patient vari-

CARERS' BURDEN AND ADJUSTMENT TO HIV

83

Table 6.2 Correlations between carers' adjustment and burden, and patients' HIV-related problems and health status and carers' coping strategies Carer's global psychological distress (BSI) Patients' HIV problems (n = 30) Instrumental concerns Emotional/existential concerns Patients' health status (n = 30) Number of symptoms Global health rating Carers' coping strategies (n - 34) Escape Action Control Optimism Fatalism Interpersonal

Carer's social adjustment (PAIS-SR)

Caregiving burden (Carer's PC total)

0.33 0.68*

0.41 0.49*

0.60* 0.52*

0.17 0.18

0.29 0.32

0.54* 0.55*

0.22 -0.42 -0.24

-0.18 -0.16 0.26 -0.15 -0.05 -0.13

-0.41 -0.08 -0.10 -0.21 -0.01 -0.04

-0.03 0.27 0.14

*A»<0.01.

ables (number of physical symptoms, global health rating, Instrumental Concerns and Emotional and Existential Concerns subscale scores) and carers' dependent variables (GSI, PAIS-SR total, and Carer's PC total) were conducted. Correlations are shown in Table 6.2. As predicted, all patient health and HIV-related problem variables were positively related to carers' adjustment and burden. The patient's Instrumental Concerns scale score, number of symptoms, and global health rating were significantly positively correlated with the Carer's PC total. Patient's Emotional and Existential Concerns subscale score was significantly positively related to all domains of carers' adjustment and burden (GSI, PAIS-SR total score, and Carer's PC total). No other significant correlations emerged. Thus, the patient characteristic that was most strongly related to all domains of carers' adjustment and burden was the emotional and existential concerns dimension of the Patient's PC. That is, the more HIV-related emotional and existential concerns reported by a patient, the more likely his carer was to experience psychological distress and impaired social adjustment. In contrast, patients' subjective health status and instrumental concerns were only related to carers' burden. That is, the more instrumental concerns and health complaints a patient reported, the more likely his carer was to experience high levels of caregiving burden. Correlations Between Carers' Coping Strategies and Carers' Adjustment and Burden Before exploring the relationship between carers' coping strategies and carers' adjustment and burden, ANOVAs were used to test for differences on each of the coping strategies using the following factors as independent variables: sex, age, education, duration of caring, residence, type of relationship with the patient and illness stage of the patient. Groups did not significantly differ with respect

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Table 6.3 Patients' and carers' mean scores on the PC, BSI, and PAIS-SR with corresponding lvalues and correlation coefficients (n = 30 dyads) Carer

Patient Measure

mean

s.d.

mean

s.d.

/•value

Correlation coefficient

PC total BSI total PAIS-SR total

11.60 6.05 38.18

4.3 4.81 15.93

9.07 4.38 24.54

4.28

3.93" 1.65 4.41**

0.66** 0.30 0.44*

3.98 14.86

* P< 0.01 ; * * P < 0.001.

to preference for each of the coping strategies. Therefore, these demographic and caregiver relationship variables were not controlled for in analyses using coping strategies. It was predicted that preference for problem-focused coping would be related to higher levels of adjustment and decreases in burden, while emotion-focused coping strategies would be related to poorer levels of adjustment and increases in burden. To test this hypothesis, correlations were performed between carers' coping strategies and each of the dependent variables (GSI, PAIS-SR total and Carer's PC total). Correlations are shown in Table 6.2. None of the correlations was significant at P < 0.01. Thus, the hypothesis that preference for problemfocused coping would be related to better adjustment and less burden, while emotion-focused coping strategies would be related to poorer adjustment and increases in burden, was not supported. However, action coping, a problemfocused coping strategy, was (P < 0.05) negatively correlated with the GSI, a finding that was in the predicted direction. The correlations between the emotionfocused coping strategies, escape and fatalism, and carers' adjustment and burden were also in the predicted direction. Patient-Carer Differences and Similarities within Dyads In order to further explore differences and similarities between carers and patients (the second aim of the study) on each of the dependent variables, ?-tests for matched pairs and correlations were performed. Given that a hypothesis was made on the direction of the difference between carer and patient, statistical significance was based on a one-tailed test, P < 0.01. Mean scores on each of the dependent variables and the ^-values and Pearson correlations appear in Table 6.3. Differences in scores on the BSI total, PAIS-SR total, and PC totals between carers and patients were in the predicted direction and all were statistically significant except for the difference between the scores on the BSI. That is, patients scored significantly higher than their carers on the PAIS-SR and the PC. Patients' and carers' scores on these two dependent variables (PAIS-SR and Carer's PC) were also significantly positively correlated as predicted. Thus, patients had significantly poorer levels of adjustment than carers. In addition, the more poorly adjusted the patient, the more likely the carer was to be poorly adjusted. T-tests and correlations were performed on the BSI and PAIS-SR subscales to

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Figure 6.1 Mean BSI subscale scores for carers and their patients with corresponding lvalues and correlation coefficients (n = 27). (O-C = obsessive-compulsive, I-S = interpersonal sensitivity, DEP = depression, ANX = anxiety, HOS — hostility, PHOB = phobic anxiety, PAR = paranoid ideation, PSY = psychoticism. * P< 0.01).

determine on which psychological distress and social adjustment dimensions patients differed significantly from carers and on which dimensions they covaried. Figure 6.1 presents the mean BSI subscale scores (excluding the somatization subscale) of the patients and of carers, along with the ^-values and correlations. Although differences between all the BSI subscale means were in the predicted direction, the only dimension on which patients significantly differed from carers and on which there was a significant positive correlation was the depression subscale. Figure 6.2 presents the PAIS-SR subscale scores of the patients and of carers, along with the t-values and correlations. Once again, differences between all the PAIS-SR subscale means were in the predicted direction. However, the only domains on which the differences between patients and carers reached significance were the vocational and sexual relations domains. Significant positive correlations occurred on the vocation and social activities domains. Thus, the more impaired a patient was in these areas, the more likely his carer was to experience difficulties in the same domains. DISCUSSION The major finding of this study is the moderately high correlations between patients' and carers' levels of adjustment (within caring dyads), indicating that

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Figure 6.2 Mean PAIS-SR subscale scores for carers and their patients with corresponding Values and correlation coefficients (n = 27). (HCO = health care orientation, VOC = vocational environment, DOM = domestic environment, SEX = sexual relations, FAM = extended family, SOC = social environment, PSYCH = psychological distress. * P< 0.01).

both patient and carer cope well together or have many problems together. This high level of synchrony between carer and patient supports a reciprocal determinism approach to understanding how both patients and carers adjust to a life-threatening illness. The model is able to accommodate the fact that caregiving involves a reciprocal relationship between two people. Within such a model the patient and his/her illness impact on the carer and the carer's response in turn impacts on the patient. These data are also consistent with those studies that have found high correlations of psychological distress, psychosocial adjustment and perceptions of life areas between patients and their spouses (e.g., Penn, 1983; Block and Boyer, 1984). The present study extends these findings by demonstrating that it is not only married heterosexual couples who tend to react to disease as a unit, but also other caring dyads. However, several limitations of the study should be considered when interpreting findings from this study. These include the relatively small sample size, the inclusion of only one sub-group of HIVinfected persons and the fact that the study was cross-sectional in design. Regarding the latter, it is acknowledged that no conclusions can be made with respect to the causal direction of relationships between variables. It was proposed that the tendency for patients and carers to react as a unit to an illness may occur because patients and carers achieve a similar level of adjustment by mobilization of complementary or similar types of coping strategies.

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To explore this explanation, post hoc analyses were conducted which indicated that carers' coping strategies were correlated with patients' coping strategies. Specifically, there was a significant positive relationship between patients' and carers' preference for escape coping strategies and a moderately strong positive relationship between patients' and carers' preference for action strategies. That is, the more patients preferred escape and action strategies the more likely carers also relied on these coping strategies. Consistent with these findings, there was a significant negative correlation between patients' preferences for escape coping strategies and carers' preferences for action strategies and between patients' preferences for optimism coping strategies and carers' preferences for escape coping strategies. Thus, the more patients preferred escape coping strategies, the less carers preferred action coping strategies, and the more patients preferred optimism coping strategies, the less carers preferred escape coping strategies. In summary, patients and carers tended to match their coping strategies, so that both tended to prefer problem-focused coping or emotionfocused coping. Another important set of findings were those concerning the specific correlates of carers' burden and adjustment. Correlates of carers' burden and adjustment appear to be whether the carer is living with the patient, patients' health, and HIV-related problems. Those living with a patient experienced markedly more burden than those who did not live with the patient. It should be noted that, although the nature of the relationship between carer and patient was unrelated to carer adjustment and burden, the small sample size may have prevented the detection of potential differences between groups of carers (e.g., parents versus friends). As predicted, patients' number of HIV-related problems and subjective health status were positively related to carer adjustment and burden. Of particular interest was how the various patient characteristics related to each of the measures of carers' adjustment and burden variables. The number of emotional and existential problems associated with being HIV-infected emerged as the strongest correlate of carers' adjustment and, to a lesser extent, burden, whereas the number of instrumental concerns experienced by patients and their subject health status was strongly associated with carers' burden. Research that has explored the relationship between patient characteristics and carer burden has typically assessed patient characteristics by using objective measures (e.g., duration of illness) or carer's perceptions of aspects of the patient's medical condition (e.g., problem behaviours), instead of using the patient's perceptions of the impact of his/her illness on various life domains (as used in the present study). It was hypothesized that the preference for problem-focused coping among carers would be related to higher levels of adjustment and lower levels of burden, whereas emotion-focused coping strategies were proposed to be related to poorer levels of adjustment and higher levels of burden. Although this hypothesis was not strongly supported, correlations between the use of problem-focused coping

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strategies and carers' adjustment and burden were in the predicted direction, with the action coping strategy showing the strongest relationship with carers' adjustment. Preference for this problem-focused coping strategy was weakly associated with lower levels of psychological distress. This trend is consistent with other research that has also found problem-focused coping to be associated with lower distress in carers (Pratt et al., 1985; Braithwaite, 1990). The correlations between two of the emotion-focused coping strategies (escape and fatalism) and carers' adjustment and burden were also in the predicted direction, with the use of escape coping showing the strongest relationship with carers' adjustment. A number of other findings of the study are worthy of mention. Contrary to expectation, patients' illness stage failed to impact significantly on carers' adjustment or burden. It is of interest that carers of HIV-asymptomatic patients experienced such high levels of burden and adjustment difficulties, given that the asymptomatic patients had no physically disabling illness, whereas most symptomatic patients experienced marked degrees of ill health. These findings suggest that the aspect of caring that is perhaps more burdensome than the practical tasks of physical care is the psychological aspect of caring. Most of the services that provide assistance for carers are directed towards the terminal end of the disease continuum, whereas less support is provided to carers of asymptomatic persons. The present study also investigated the differences in adjustment between patients and carers. Specifically, it was predicted that patients would report lower levels of adjustment than carers. When considered in dyads, carers were significantly better adjusted and had fewer problems compared to their patients. With respect to differences in global psychological distress, depression was the only dimension on which the difference between patients and carers reached significance. As expected, patients' and carers' depression scores were highly correlated, in that the more depression patients reported the more depression carers were likely to report. Post hoc analyses comparing carers' BSI scores with published BSI norms for nonpatients (Derogatis and Spencer, 1982) revealed that six carers had scores greater than one standard deviation above the norm. Given that six carers had clinically significant levels of psychological distress, it is important that healthcare professionals assess and monitor the factors found in the present research that place carers at risk for mental health problems. As discussed earlier, the most problematic aspect of a carer's caregiving role appears to be his/her own process of adjustment to the reality that the loved one has a stigmatized life-threatening illness and the patient's HIV-related psychological and existential distress. Carers, like their infected loved ones, need support to 'work through' this adjustment process. A model of intervention that may be helpful is the psychoeducational approach, which has been used extensively with carers of persons with a psychiatric illness (e.g., Pakenham and Dadds, 1987). Future research employing longitudinal designs, larger samples of carer-patient dyads from several different sub-groups of HIV-infected persons, and more rigorous statistical analyses will shed more light on the determinants of

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carers' burden and adjustment and the potential reciprocal effects of patients' and carers' adjustment. Nevertheless, the present study is notable in that it provides further evidence regarding the correlates of carers' burden and adjustment to HIV and the synchrony between patients' and carers' response to the illness situation.

NOTES 1. The terms 'carer' and 'caregiver' in this paper refer to persons caring for a person with HIV primarily because of a pre-existing informal relationship with the infected person (e.g., partner, family member, close friend) and do not refer to professional or paraprofessional caregivers. 2. In analyses performed on patient-carer dyads the two HIV-infected persons and the two sets of parents were excluded as it was difficult for both patients to select who was the primary carer. Regarding analyses that included the complete sample of carers (n = 34), it is recognized that including the two sets of parents may potentially violate assumptions of independence. Therefore, analyses were performed with these four carers excluded and the results were similar to those analyses performed on the complete sample. 3. A copy of the Carer's PC and Patient's PC is available on request from Dr Kenneth I. Pakenham. 4. Differences on the dependent variables between gay and non-gay carers were explored using ANOVAs and no significant differences were found. However, being a gay carer was confounded with type of relationship (e.g., partner) and living arrangement.

REFERENCES Baider, L. and Kaplan De-Nour, A. (1984) Couple's reactions and adjustment to mastectomy: preliminary report. International Journal of Psychiatry in Medicine, 14, pp. 265-276. Baider, L. and Kaplan De-Nour, A. (1988) Adjustment to cancer: who is the patient - the husband or the wife? Israel Journal of Medical Sciences, 24, pp. 631-636. Beattie, S. and Viney, L. L. (1981) Appraisal of lone parenthood after marital breakdown. Journal of Personality Assessment, 45, pp. 415-423. Block, A. R. and Boyer, S. L. (1984) The spouse's adjustment to chronic pain: cognitive and emotional factors. Social Science and Medicine, 19, pp. 1313-1317. Braithwaite, V. A. (1990) Bound to Care (Sydney, Allen & Unwin). Cantor, M. H. (1983) Strain among caregivers: a study of experience in the United States. Gerontologist, 23, pp. 597-604. Centers for Disease Control (1987) Revision of the CDC surveillance case definition for acquired immunodeficiency syndrome. Morbidity and Mortality Weekly Report, 36 (Suppl. 1), pp. 3S-15S. Christ, G. H., Weiner, L. S. and Moynihan, R. T. (1986) Psychosocial issues in AIDS. Psychiatric Annals, 16, pp. 173-179. Dadds, M., Dooley, R. and Pakenham, K. I. (1985) Behavioural family interventions in the management of schizophrenia: a review. Behaviour Change, 2, pp. 102-110. Derogatis, L. R. and Lopez, M. C. (1983) Psychosocial Adjustment to Illness Scale (PAIS & PAIS-SR) Scoring, Procedures and Administration Manual-1 (Baltimore, Clinical Psychometric Research). Derogatis, L. R. and Spencer, P. M. (1982) Administration and Procedures: BSI Manual - I (Baltimore, Clinical Psychometric Research). Eagles, J. M., Craig, A., Rawlinson, F., Restall, D. B., Beattie, J. A. G. and Besson, J. A. O. (1987) The

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psychological well-being of supporters of the demented elderly. British Journal of Psychiatry, 150, pp. 293-298. Fitting, M., Rabins, P., Lucas, J. M. and Eastham, J. (1986) Caregivers for dementia patients: a comparison of husbands and wives. Gerontologist, 26, pp. 248-252. Folkman, S. and Lazarus, R. S. (1980) An analysis of coping in a middle-aged community sample. Journal of Health and Social Behavior, 21, pp. 219-239. Frierson, R. L., Lippman, S. B. and Johnson, J. (1987) AIDS: psychological stresses on the family. Psychosomatic*, 28, pp. 65-67. Furstenburg, A. L. and Olsen, M. M. (1984) Social work and AIDS. Social Work In Health Care, 9, pp. 45-62. Geiss, S. B., Fuller, R. L. and Rush, J. (1986) Lovers of AIDS victims: psychosocial stresses and counseling needs. Death Studies, 10, pp. 43-53. George, L. K. and Gwyther, L. P. (1986) Caregiver well-being: a multidimensional examination of family caregivers of demented adults. Gerontologist, 25, pp. 253-259. Gilhooly, M. L. M. (1984) The impact of caregiving on caregivers: factors associated with the psychological well-being of people supporting a dementing relative in the community. British Journal of Medical Psychology, 57, pp. 35-44. Kennedy, S., Kiecolt-Glaser, J. K. and Glaser, R. (1988) Immunological consequences of acute and chronic stressors: mediating role of interpersonal relationships. British Journal of Medical Psychology, 61, pp. 77-85. Lazarus, R. S. and Folkman, S. (1984) Stress, Appraisal, and Coping (New York, Springer). Lippmann, S. B., James, W. A. and Frierson, R. L. (1993) AIDS and the family: implications for counselling. AIDS Care, 5, pp. 54-71. McCann, K. and Wadsworth, E. (1992) The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs? AIDS Care, 4, pp. 25-34. Minuchin, S., Baker, L., Roseman, B., Liebman, T., Milman, L. and Todd, T. (1975) A conceptual model of psychosomatic illness in children. Archives of General Psychiatry, 32, pp. 1031-1038. Morris, L. W., Morris, R. G. and Britton, P. G. (1989) Cognitive style and perceived control in spouse caregivers of dementia sufferers. British Journal of Medical Psychology, 62, pp. 173-179. Pagel, M. M., Becker, J. and Coppel, D. B. (1985) Loss of control, self-blame and depression: an investigation of spouse caregivers of Alzheimer's disease patients. Journal of Abnormal Psychology, 94, pp. 169-182. Pakenham, K. I. (1990) Research Report: The Needs of Those Affected by HIV in Old Age (Brisbane, Leader Press). Pakenham, K. I. and Dadds, M. (1987) Family care and schizophrenia: the effects of a supportive educational program on relatives' personal and social adjustment. Australian and New Zealand Journal of Psychiatry, 21, pp. 580-590. Pakenham, K. L, Dadds, M. and Terry, D. J. (1994) The relationships between adjustment to HIV and both social support and coping strategies. Journal of Consulting and Clinical Psychology, 62, pp. 1194-1203. Peabody, B. (1986) Living with AIDS: a mother's perspective. American Journal of Nursing, pp. 45-46. Penn, P. (1983) Coalitions and binding interactions in families with chronic illness. Family Systems and Medicine, 1, pp. 16-26. Platt, C. C, Schmall, V. L., Wright, S. and Cleland, M. (1985) Burden and coping strategies of caregivers to Alzheimer's patients. Family Relations, 34, pp. 27-33.

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Revenson, T. A. and Felton, B. J. (1989) Disability and coping as predictors of psychological adjustment to rheumatoid arthritis. Journal of Consulting and Clinical Psychology, 57, pp. 344-348. Soskolne, V. and Kaplan De-Nour, A. (1989) The psychosocial adjustment of patients and spouses to dialysis treatment. Social Science and Medicine, 29, pp. 497-502. Turk, D. C. (1979) Factors Influencing the Adaptive Process with Chronic Illness, in: I. Sarason and C. Spielberger (eds), Stress and Anxiety, Vol. 6 (Washington, DC, Halsted Press). Turk, D. C. and Kerns, R. D. (eds) (1985) Health, Illness and Families: A Life-span Perspective (Toronto, John Wiley & Sons). Viney, L. L. and Westbrook, M. T. (1982) Coping with chronic illness: the mediating role of biographic and illness-related factors. Journal of Psychosomatic Research, 26, pp. 595-605. Viney, L. L., Westbrook, M. T. (1984) Coping with chronic illness: strategy preferences, changes in preferences and associated emotional reactions. Journal of Chronic Disability, 37, pp. 489-502. Vitaliano, P. P., Katon, W., Maiuro, R. D. and Russo, J. (1989) Coping in chest pain patients with and without psychiatric disorders. Journal of Consulting and Clinical Psychology, 57, pp. 338-343. Westbrook, M. T. (1979) A classification of coping behaviour based on multidimensional scaling. Journal of Clinical Psychology, 35, pp. 407-410.

SEVEN

Identifying Helpful and Unhelpful Behaviours of Loved Ones: The PWA's Perspective Robert B. Hays, Robert H. Magee and Sarah Chauncey

INTRODUCTION A considerable body of research demonstrates that the support provided by one's informal social network of friends and family is a significant contributor to successful coping with serious illness (Bloom, 1982; Wortman and Con way, 1985), including AIDS (Joseph et al., 1990; Hays et al., 1992; Britton et al., 1993; Green, 1993). Friends and family can provide persons with AIDS (PWAs) with a wide range of valuable resources - including emotional support, companionship, information and advice, task assistance and material aid - that may significantly enhance the PWA's quality of life. Unfortunately, however, research also shows that many factors frequently interfere with the degree to which friends and family members actually provide effective support to an ill loved-one. Factors such as anxiety, interacting with someone who is seriously ill and uncertainty as to what behaviours are most helpful or appropriate often cause people to avoid interacting with the seriously ill, or to behave in ways that are perceived as unsympathetic, insensitive or rejecting by the ill person (Wortman and Lehman, 1985). Indeed, as Dunkel-Schetter and Wortman (1982) have discussed with regard to cancer patients, the more unfortunate the victim's plight, the more threatened, uncomfortable and rejecting others may become, thus 'individuals in greatest need of social support may be least likely to get it' (p. 70). The importance of examining dissatisfactions with one's social network is underscored by findings that negative social interactions are more strongly related to mental health outcomes than positive elements of social relationships (Fiore et al., 1983; Rook, 1984), though it is also true that poor mental health may predispose one to view social interactions in a more negative light (Beck, 1976). Since AIDS is a relatively new illness and many people have not had much experience in dealing with persons with AIDS, many individuals may feel

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uncertain or confused about how they can provide the most helpful support to persons with AIDS. The purpose of this study was to identify specific behaviours performed by friends and family1 that individuals with AIDS feel are helpful and supportive, or unhelpful and upsetting. The findings from this study may be useful to AIDS service providers in: (a) guiding their own behaviours with PWAs; (b) providing counselling and support services to those who interact with PWAs as friends, family, caretakers or support providers; and (c) developing policies and procedures that will enhance the support resources of PWAs. METHOD Participants Twenty-five men living in the Washington, DC area participated in this study. Participants in the study were recruited from the Washington, DC area through announcements: (a) placed in the local gay community newspaper, (b) distributed at support group meetings for PWAs offered by a community health clinic, and (c) distributed by a private physician. The announcements asked for gay men who would be willing to be interviewed about their social networks and the impact AIDS has had on their relationships with other people. Interested individuals were asked to contact the principal investigator by telephone, at which time the research was more fully explained and interview appointments were set. Due to our limited resources, participants were not offered any compensation for their involvement. The participants ranged in age from 23 to 51, with a mean age of 34.76 (s.d. = 7.96). Twenty-four men described themselves as gay; one as bisexual. Twentythree were white; one Hispanic, one Black. Twenty-two reported diagnoses of AIDS, ranging from 1 month to 4.5 years prior to the interview. Three reported diagnoses of AIDS-related complex (ARC), ranging from 7 months to 7 years. Eleven of the men lived alone, 9 lived with friends or lovers, 3 lived with relatives, 2 lived in housing for persons with AIDS run by the community health clinic. Eight of the men were currently employed (3 full-time, 5 part-time). Seven men regularly attended AIDS/ARC support groups run by the community health clinic; 28% also attended other forms of support groups (most commonly Alcoholics Anonymous). Ten men were involved in a 'lover/partner' relationship. Procedure Individual semi-structured interviews were conducted in a private location selected by the interviewee, most commonly the interviewee's home or a clinical interview room on the university campus. The interviewers included a gay male psychologist (the principal investigator) and two female psychology students (one lesbian and one bisexual) trained by the principal investigator. At the beginning of the interview, the interviewers explained the purpose and format of the

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interview, emphasizing the confidentiality of all information collected. The men were asked to sign a consent form if they agreed to participate. Permission was also requested to audio-tape the interviews; all men agreed to this. The interviews focused on a broad range of topics related to the men's social networks. The men's social networks were assessed using procedures adapted from Antonucci and Israel (1986). First, the interviewee was presented with a diagram consisting of two concentric circles with 'you' written in the centre, asked to think of all the people he had contact with, and asked to select those individuals 'whose relationships you consider particularly enjoyable or important to you in some way'. The first names of people he felt especially close to were written in the inner circle, while the outer circle was for people who were 'not as close as those in the first circle, but still enjoyable or important in some way'. No limit was imposed on the number or types of individuals who could be listed. The men were then asked to provide more detailed information about the 10 closest network members listed on the diagram, including demographic information and ratings of the amount and types of support that person provided. Finally, we asked two open-ended questions with regard to each of the 10 network members: (1) perceptions of specific behaviours which the network member had done that he felt were helpful or supportive. ('What has been the most helpful thing, or things, this person has said or done for you since your diagnosis?'), and (2) perceptions of specific behaviours which they felt were not helpful or were annoying. ('Sometimes, in trying to help someone, people may say or do things that are not in fact helpful. In the time since your diagnosis, is there anything this person has said or done that has not been helpful, or that has upset or offended you? If so, what was that?') Only that portion of the data dealing with behaviours perceived to be helpful and unhelpful will be treated here. Detailed findings related to social network functioning and psychological well-being can be found in Hays et al. (1990).

RESULTS Network Composition The number of individuals listed on the men's social network diagrams varied greatly, ranging from 9 to 82, with a median of 18 (s.d. = 6.51). On average, PWAs included 14 people in their 'close' inner circle and 11 people on the outer circle. Seventy-six per cent included at least one other person with AIDS or ARC in their social networks. Of the 10 closest network members about whom the PWA was asked to provide more detailed information, 55% were friends and 33% were relatives. Two-thirds were male and 54% were gay or lesbian. Sixty per cent of the men included their mothers, 52% their fathers, and 76% included a sibling, most often a sister. Most men included at least one fellow PWA among their closest network members. Most typically, the men had been friends with this person prior to their diagnoses and reported subsequently becoming closer.

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Table 7.1 Categories of helpful and unhelpful behaviours identified by PWAs Helpful

Unhelpful

Emotional Expressing love or concern Serving as confidant to express feelings

Avoiding expression of feelings Breaking confidentiality Expressing a pessimistic attitude Expressing doubt about PWA's medical care Criticizing PWA's response to AIDS Being treated in a patronizing or overprotective manner Making unreasonable demands Acting in a judgmental manner

Providing encouragement

Providing an opportunity for reciprocity Providing a philosophical perspective

Acting embarrassed or ashamed

Interacting naturally Acting as a role model Providing companionship or enjoyment

Avoiding interaction with them Rude or insensitive comments or actions

Instrumental Practical assistance Providing material aid Providing information or advice Providing support for other network members

Although we did not directly ask whether each network member was aware of the PWA's diagnosis, from the PWA's responses, it seemed virtually all of their closest members did know. Content-Analysis Procedure The open-ended questions were transcribed and content-analysed by the authors to identify categories of helpful and unhelpful behaviours. Prior to identifying the categories, we reviewed categories of helpful/unhelpful behaviours formulated with regard to other challenging life experiences, such as cancer (PetersGolden, 1982; Dakof et «/., 1987), single motherhood (Gottlieb, 1978) and bereavement (Lehman et «/., 1986), and theoretical taxonomies of social support resources (e.g., Barrea and Ainlay, 1983; House and Kahn, 1985), but our goal was to derive categories that were particularly relevant to AIDS and behaviourally specific enough to provide practical guidance for those who interact with PWAs. The 12 categories of helpful behaviours and 11 categories of unhelpful behaviours that were identified are presented in Table 7.1. Helpful Behaviours Many of the behaviours considered helpful can be seen as providing what in the social support literature is deemed 'emotional support', in that they foster feelings of comfort and assurance that the recipient is loved, understood and respected; or help him to adapt emotionally to the challenges of living with AIDS. These emotionally supportive behaviours are described below.

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EXPRESSING LOVE OR CONCERN The most frequently cited helpful behaviour - and perhaps the most highly valued resource network members can offer - is expressing love, concern or other positive feelings for the PWA. This can be done through physical, verbal or behavioural gestures, and was often described by the men as expressing a willingness to help in any way needed or simply 'being there'. The following quotes convey the variety of ways this can be expressed: He makes me feel that the reason he's around is because he wants to be with me whether I'm making $100,000 a year or I'm on welfare, AIDS or not. She's been going to a support group for people who know others with AIDS - that lets me know she cares. Always restating her support and love, repeating that she's there for me. Every time I see my father, he says 'You've given me the greatest gift anyone could give by coming to see me', and he hugs me and cries every time I leave. There's nothing to equal that kind of support. I couldn't ask for anything else.

SERVING AS CONFIDANT TO EXPRESS FEELINGS Having someone to talk to was greatly appreciated by the men - a 'shoulder to cry on', someone who listens and expresses empathy or understanding. In the words of one man: 'The most helpful is* that he listens to me groan, moan, bitch and whine.' Another said, 'When I have a problem, he's probably the first person I call, just to talk. It seems like his phone is always open to me. If I need to talk, I can always call him. We talk for hours on end sometimes.' Friends who also have AIDS were cited as highly valued confidants. One man described such a friend this way: We're sort of in the same position, and we found out at the same time, so in that way, we have this unique relationship. I can say things to him that I wouldn't say to my lover, just because he doesn't want to hear every gory detail, whereas somebody who's in the same shoes, it doesn't matter.

PROVIDING ENCOURAGEMENT Behaviours that express a positive, optimistic attitude toward the PWA's ability to cope with AIDS or toward the future possibility of a cure or treatments were greatly appreciated. Since AIDS is typically portrayed as a hopeless, inevitably fatal illness, the optimistic, encouraging attitudes of loved ones can be very gratifying. The following quotes from participants reflect this type of support: 'She calls me at least once a week and it's basically to see how I'm doing, telling me to hang in there, she knows they'll find a cure'; 'He's a very positive person, so I get some of that each time I speak with him. Every time we speak on the phone, I get reassurance.'

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PROVIDING AN OPPORTUNITY FOR RECIPROCITY

This extremely important and often overlooked aspect of social support helps the PWA to feel valuable or needed. As one man said, Generosity can become very oppressive. Being on the receiving end for dinner or a movie, repeatedly, can become a problem. Sheila's very good about allowing me to do the things that I can do, that I want to do, to help myself. She ends up helping me more than anyone else, yet at the same time, she seems to offer as many opportunities as possible to help myself, to carry my own weight.

Another man said, She's been going through some rough times. It's like you really feel a bond with someone who's also having some rough stuff. You feel like you have something to give them as well as them to you.

This is one reason participation in support groups can be beneficial for PWAs. In describing his group, one man expressed it very well: They represent opportunities for me to offer support in return, and I think that's often undervalued. Having AIDS makes you feel, in many ways, so incapable and impotent. Being involved in a support group can pull you out of yourself, and out of your problems, and help you to realize that you can still make a difference to people, that you can still make someone else feel better. It's so very empowering to have the opportunity not just to receive such support, but to give it in return.

The importance of reciprocity was underscored in quantitative analyses of other data from this study, in which the degree to which the PWA felt he reciprocated support to network members emerged as the variable most highly correlated with positive psychological well-being (Hays et al., 1990). ACTING AS A ROLE MODEL

The participants very much appreciated experiencing inspiring behaviours by network members that motivated them to follow his or her example. Again, other PWAs were reported as especially important in providing this type of support. Reflecting this are quotes such as 'he's the kind of person I'd like to be', 'he's a long-term survivor'. Another man said, He's been better about dealing with not being depressed as I have by the illness. Just by his example sort of plunging ahead with projects and stuff he's been helpful to me.

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PROVIDING A PHILOSOPHICAL PERSPECTIVE A number of men reported that they felt it to be helpful when network members provided a philosophical or spiritual perspective about their experience. As one man said, She's talked to me about the other life, which I believe in. And she'll say 'Well, so, everybody has to die sometime/ and she takes it like that. She has an attitude about it that it's a good thing, not a bad thing, to go into the other life. And it's a little bit refreshing, in a way, for me to hear that point of view.

Another man described a helpful friend, saying He's kind of like an existentialist, like 'why worry and cry over it'. It's not really sounding as good as he says it, but like 'you really should be enjoying life the best you can'. He has taught me a lot.

Of course, to be experienced as helpful, it is important that the provider and recipient share similar philosophies or beliefs. If not, statements will have no effect or can be very annoying (e.g., 'Sonny is the kind of person who thinks that faith will get you through. He comes from a very religious background. But I don't think faith in God is gonna find a cure or allow me to live 50 years.') INTERACTING NATURALLY One of the most appreciated qualities of helpful network members is 'not treating me differently' - relating to the PWA in the same way they always have. For example, in describing his sister, one man said, 'Of all my other family members, she is the only one who treats me the way she did before. It's a great comfort - a breath of fresh air.' Another appreciated what he called the sense of normalcy with his friend: 'Laughter and banter on the phone, we talk about the same things we talked about before I got sick. I appreciate that the relationship is what it has always been.' A second general category of helpful behaviours is more directly problemfocused, providing resources that are more instrumental in nature. PROVIDING INFORMATION OR ADVICE

Given the tremendous amount of uncertainty surrounding an AIDS diagnosis particularly in terms of prognosis and treatment approaches - it is not surprising that informational support was greatly appreciated. Information about medical issues was valued, as well as advice about dealing with ramifications of the illness, such as telling one's parents and legal issues. Fellow PWAs were often mentioned as especially helpful and trusted sources of information, as were network members who had expertise in relevant areas:

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Since he's been diagnosed with the virus, he knows more about it than I do. He's told me not to get upset with certain things that I've been looking for, and given me a lot of information. He sent me articles to read. One sister has provided me with quite a bit of medical advice. She's a nurse. She's given me articles to read on AIDS.

PRACTICAL ASSISTANCE Since AIDS can be an overwhelming drain on both one's physical and psychological energy, helping with day-to-day tasks or performing errands for the PWA can be extremely valuable. This permits the PWA to conserve his or her energy, or to focus it on more central issues. Frequently mentioned types of assistance were giving rides, cooking meals, helping with household tasks, and helping with medical treatments or insurance issues. PROVIDING MATERIAL AID

Since illness often forces individuals with AIDS to stop working and medical treatments can greatly strain his or her financial resources, gifts can be very helpful. Gifts can also serve as pleasant reminders that one is loved and cared for. For example, one man very much appreciated the sister who sent him 'care packages', or the relatives who included cheques for money in their letters. One man reported being delighted when his friends all chipped in to give him a free trip to Jamaica. The two remaining categories of helpful behaviours represent positive interactions that are often not included in typologies of social support but were described as highly valued by our respondents. PROVIDING COMPANIONSHIP OR ENJOYMENT

Having AIDS can understandably make one feel very alienated and depressed. There can be a tendency to withdraw from others or for others to withdraw from the PWA. Therefore, one of the most helpful things network members can do is simply spending time with the PWA, engaging in social activities, providing fun, enjoyment or relaxation. Comments about network members which exemplify this type of support are: He's fun, he gets me to do a lot of things where otherwise I might sit home on my ass. Visiting in the hospital and spending time with me at the hospital, coming down and spending an afternoon. He's a fun person, he has a lot of energy and he's just a lot of fun to be around.

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PROVIDING SUPPORT FOR OTHER NETWORK MEMBERS

The men often expressed a sense of uneasiness or guilt that their being sick was causing pain or a burden for their loved ones. Thus, anything someone could do to alleviate the loved one's plight was greatly appreciated by the men. For example, one man talked about how when he was first diagnosed, and in the hospital, his supervisor at work talked with his co-workers to help them deal with it before he came back to work. Another described how a friend 'stepped in and became my primary caretaker, and relieved (my lover) of the responsibilities that he'd taken on.' Others expressed appreciation for siblings who helped their parents deal with their illness. Unhelpful Behaviours On the other hand, the men were not at a loss to describe ways in which their friends and family had, usually unintentionally, upset them or failed to provide effective support. Many of these behaviours were the opposites of those cited as helpful, as shown in Table 7.1. Eleven categories of unhelpful behaviours were identified: BEING TREATED IN A PATRONIZING OR OVERPROTECTIVE MANNER The most commonly reported complaint the men had about the behaviour of their loved ones was that they often acted in an overly 'mothering' or protective way toward them, as if they were children, incapable of taking care of themselves. This feeling of being 'babied' can be very difficult for adult men to deal with, and was reported with regard to both family and friends. In describing a friend who was guilty of this, one man said, 'He's tried to mother me a little too much, constantly telling me to dress warm, something that small to picking up the phone and calling my lawyer and speaking for me when I should have been the one to do it. He's a little overprotective and I've had to tell him to stop.' Another man said: I think sometimes he assumes there are things I can't do for myself, for example, over New Year's he went to Atlantic City, and he said he would've invited me, but he didn't think I was up to the trip. In fact, on New Year's Eve, I went dancing and probably did more than he did.

This overprotectiveness was often exemplified by loved ones' continually asking the men how they were feeling, which can become quite annoying. In one man's words, One of the biggest things is don't ask me how I feel or how I am doing, if someone else asks me one more time today I'm gonna scream. Again, that concern that they have wanting to know, but when you have to talk about it everything comes back, and then you have to deal with it constantly. Sometimes when he's sitting here by the TV, he'll ask me 5 times.

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AVOIDING INTERACTION WITH THEM

One of the responses which the men described as very painful was friends and family leaving them alone or excluding them from social activities. In some cases, the men felt this was due to an irrational fear of 'catching AIDS' from them, but more typically due to emotional discomfort of being around someone with AIDS. The men described network members who would telephone, but not come up to their apartment, or would keep their children away from them. One man who lived with his brother expressed being very hurt by his sister who would telephone and speak to his brother: She won't talk to me at all, except to say hello, or how are you doing or such. That's kind of annoying. I find that all of my siblings are doing that. They'll talk to him for an hour, and they won't talk to me at all, and I'm right there, next to the extension phone, and they won't even talk to me. AVOIDING EXPRESSION OF FEELINGS

A different level of avoidance was also frequently mentioned - that is, despite physically interacting with the PWA, avoiding open expressions of feelings or beliefs. Some network members avoided directly mentioning or discussing AIDS or any emotional issues related to the PWA's illness. They would close off any direct expression of emotions or act in a phony, insincerely cheerful manner. Respondents told of friends and family members who wouldn't let them talk about AIDS, who would always hurry to change the subject if it ever seemed like it was coming up, or if he started to express 'negative emotions'. Others described network members who would only talk about superficial things and never mention AIDS or illness. Referring to a friend who did this, one man said, 'He doesn't seem to want to acknowledge the impact AIDS has on your life. To him, it's something he would prefer to keep in the background.' This can be infuriating for PWAs and impede their working through their own emotional adaptation to their condition. CRITICIZING PWA'S RESPONSE TO AIDS

Giving unsolicited advice or criticism was felt to be very unhelpful. The men resented when network members sometimes suggested they should act or feel differently. Speaking of his brother, one man said, He doesn't understand my depression over the illness entirely, and he expects me to be cheerful more than I feel. The depression in my situation is normal. He doesn't tolerate it, he just yells at me if I get too down, if I get too negative. Anybody in my situation would feel the same depression I think. I wish he was more understanding of it. We can't be happy all the time.

Another man said, 'He often thinks I overreact to symptoms I'm having and it's irritating to be told how you should feel or how you should respond.' The

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criticism can also be transmitted nonverbally: 'When I was really sick and I had so much fatigue I just couldn't move some days and she didn't know what was going on. It's like you get a sense of someone just waiting for you to snap out of it.' ACTING EMBARRASSED OR ASHAMED

Many men reported that their network members sometimes tried to keep their illness a secret from others or expressed the desire that the PWA would keep it secret. One man described how he had telephoned his mother to tell her about his illness and her first comment was 'Don't tell your brother and the children', then later when he tried to call her again, the phone was disconnected. The family had moved out of state and didn't tell him where they had moved. They were so concerned about the family's reputation, they wanted nothing to do with him anymore. Other men expressed frustration with relatives or co-workers who were insistent that neighbours or customers not find out about the PWA's illness. BREAKING CONFIDENTIALITY

There are many very good reasons why someone with AIDS may not want particular people to know about his illness, and it can be extremely upsetting when a network member tells someone else without permission. As one man said, It's a burning issue with me that people are very loose at spreading this information. People with AIDS have a lot they can't control, but they ought to be able to control who knows and how someone finds out.

Sometimes the betrayal is inadvertent but still upsetting, for example, one man described attending a church service with his sister: They have a long list of people to pray for, and I was included on the verbal list spoken by the pastor. It surprised me and made me uncomfortable. I don't really mind them praying for me, it was just my name being publicly identified as a PWA. MAKING UNREASONABLE DEMANDS

Oftentimes the men felt that friends and family were not sensitive to the limitations AIDS may place on one's abilities, and so expressed expectations or made requests that they could not realistically meet. For example, men described friends who would get impatient with them when they got tired easily. One man talked about how his mother 'insisted I eat, and expressed frustration when I'd throw up'. Even though the men could often see good intentions underlying the person's behaviour, they still felt uncomfortable that they were being pressured or were disappointing others. The demands loved ones placed on PWAs were often inadvertent, occasionally coupled with support attempts. For example, one

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man talked about the strain of having visitors to his home since it meant he had to do extra cleaning, shopping and cooking to accommodate the visitor. ACTING IN A JUDGMENTAL MANNER

The men expressed great displeasure about network members making comments that suggested they were at fault for their illness or using religious or moral references to change them in some way. For example, when one man told his exwife about his illness, she said, 'If you had stayed with me, this wouldn't have happened.' Speaking of his mother, another man said: She probably thinks I'm going to hell if I don't accept Jesus. I think she wants to save me. I'm not so sure our religious beliefs are that far apart, but I prefer not to talk about it. When she sent me a cheque for the AZT, she also sent me a note asking where I wanted to spend eternity, and wouldn't it be nice to be with the rest of the family.

EXPRESSING A PESSIMISTIC ATTITUDE The men reported that it was very unhelpful when those they interacted with communicated a negative, hopeless attitude about AIDS or acted depressed or gloomy around them. The men complained about family members who were always crying around them, or friends who 'act like I'm going to die tomorrow'. One man's mother told him how heartbroken she was that he would be dying before her. EXPRESSING DOUBT ABOUT THE PWA'S MEDICAL CARE Perhaps well-intentioned questions and comments about medical treatments can be very troubling for PWAs when they raise doubt about their doctor's competence or the effectiveness of their treatment. Providing otherwise helpful information and advice is perceived as unhelpful when it is presented in a critical or pessimistic manner. For example, one man described discussing his treatment with a friend who also had AIDS. His doctor is much more aggressive than mine is, and it's a little disquieting. It's interesting and helpful that he mentions these things, and it's not that I don't want him to do it. It's just the way he does it. It's like he's doubting my medical care.

As one man explained it, The reason it upsets me so much is that it goes straight to the heart of my fears that 'what if my medical treatment isn't effective?' Someone taking an evangelistic stand about any sort of treatment puts you in a position where you either have to stop listening completely and just write them off, or you have to accept the possibility that you're being foolish by not listening.

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RUDE OR INSENSITIVE COMMENTS OR ACTIONS

The men reported occasionally being hurt or upset by insensitive or inconsiderate behaviours by network members. The men gave a wide range of examples, including 'being ridiculed about my bad memory'; being asked 'to start planning my funeral arrangements'; having people smoke around them; having one's possessions thrown out by relatives who were cleaning his house; not being given opportunity to be alone, etc. One man described being hurt when his mother 'mentioned that she felt she could have brought me up better. I told her it wasn't her fault. In a way, she kind of blamed herself for my turning out gay. That kind of upset me a bit.' Others complained about friends who 'tell me horror stories of other PWAs'. ('The thing that disturbed me the most was probably that he said that this one person died and all the emergency people arrived in these sort of moon suits, and all the family was there. It was really distressing.')

DISCUSSION As the comments of the participants attest, the behaviours of friends and family can impact PWAs both positively and negatively. Many of the helpful behaviours identified in this study parallel those found in research with other major life events such as cancer (Peters-Golden, 1982; Dakof et al., 1987), single motherhood (Gottlieb, 1978) and bereavement (Lehman et al., 1986). Expressing love or concern, serving as a confidant, providing encouragement, and offering practical assistance seem to be universally appreciated. However, the impact of informational support for persons with AIDS may differ from research with other life crises, in which advice-giving is often not perceived as helpful. The tremendous amount of uncertainty and continually changing knowledge base surrounding AIDS may make informational support more appreciated than is the case with other life crises. The debilitating nature of AIDS and high expenses of treatments may also increase the need for material aid for PWAs as compared to other life crises. Interestingly, the unhelpful behaviours identified here are somewhat more AIDS-specific. Due to the greater stigma, discrimination and moralizing associated with AIDS compared to other illnesses (Nichols, 1987; Kegeles et al., 1989), persons with AIDS can be especially sensitive when others do not respect their confidentiality, or respond to them in a judgmental, ashamed or avoidant manner. Likewise, since there is still a great deal of uncertainty regarding the medical course of AIDS and little consensus on the most effective treatment approaches, criticisms of one's medical care can be very unsettling for PWAs. It is important to emphasize, however, that even though we have focused on specific behaviours performed by network members, the nature of the relationship between the PWA and network member is critical in giving meaning to the behaviour. There were a number of behaviours which were perceived in some cases as helpful, but in others as unhelpful, depending on who performed them. For example, 'making AIDS jokes' was fairly commonly reported and considered a helpful way to ease tension when made by a fellow PWA, but offensive when

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made by most other network members. Likewise, attempts to express love and concern will fall flat if there is no underlying bond between the network member and the PWA. For example, complaining about his parents' behaviour, one man said, 'It really stems from the fact they don't know who I am, so anytime they are trying what they think might be some sort of emotional support, it doesn't come off that way. It comes off as false, hollow.' Likewise, the timing of the support attempt is critical. For example, one man reported being very upset when his sister asked him about his preferences for his funeral very soon after his diagnosis, saying She believes in getting things in order. I guess the negative part of it was that it was brought up so soon after diagnosis. I can remember that negative moment, and since that time frame, it's become a positive thing, discussing it and trying to get things in order. At the time, I would've preferred her bringing it up at some later point.

In addition, sometimes particular behaviours can be experienced simultaneously as helpful and unhelpful. For example, one man said about his mother, 'Sometimes she nags a bit too much, but that's a help sometimes, it shows me that she's concerned, and due to her nagging, I might do something more healthy than I would have.' Another man said: Well, sometimes she means well, but she tries to regulate my life too much. Like she controls all my money and everything. But I understand that because I do have a drug problem, and I might spend all the money on drugs, so that's kind of helpful and not kind of helpful.

In considering the effectiveness of support attempts, one must consider both the short- and long-term effects of the behaviour. For example, criticizing a PWA's medical treatment may be immediately anxiety-provoking for the PWA, but if the medical care truly is substandard and the criticism motivates him or her to seek a more competent doctor, then the criticism may serve a valuable purpose. A key lesson to learn from these findings is that those who attempt to provide support to persons with AIDS must be attuned to the implicit meaning of the behaviours they direct toward the PWA. As social psychological theory (Mead, 1934; Gergen, 1977) informs us, individuals derive much of their identity and self-esteem from observing how other people relate to them. In interacting with PWAs, network members should be mindful that their attempts to be helpful are not unintentionally 'victimizing', i.e. that they do not convey a sense that the PWA is incapable of managing his life or strip him of his personal dignity. In coping with their illness, PWAs confront many personal losses, in terms of their energy level, personal appearance, future goals, social and career opportunities, etc. It is thus very gratifying for PWAs when friends and family relate to them in

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such a way that allows them to retain the identity of the persons they were prior to AIDS. In the words of one participant, You can get into kind of being the victim or someone who's just one mass of sickness. [My friend] was able to get me to connect with some positive things that could make me feel like I wasn't just this sick person.

This is one reason being provided opportunities to reciprocate support was so appreciated by the participants; helping others affirms that they are still active, contributing members of their social worlds. The importance of this research for AIDS service providers is twofold. First, AIDS service providers must be aware of the psychological impact of their behaviours on the PWA. Second, AIDS service providers may be effective in providing counselling and feedback to social network members who may be unsure how to relate to loved ones with AIDS. PWAs themselves may be reluctant to directly voice specific requests or dissatisfactions with the behaviours of loved ones due to fear of offending or driving away the loved one whose involvement is otherwise very much appreciated. By offering guidance and support to social network members, service providers may be able to increase and strengthen the social support resources available to PWAs. There are a number of limitations to the research presented here. The small sample size and the fact that all the participants were gay men (and predominantly white, middle-class) may limit the generalizability of the findings. Whether individuals with AIDS who represent different social and demographic groups differ in the types of behaviours they perceive to be helpful is an important question for future research. In addition, we assessed only the perspectives of the PWAs. Investigations of the perspectives of the network members would provide a valuable supplement, particularly in understanding the intentions behind their behaviours and the contributing reasons for their behaviours, e.g., what cues do the PWAs give off that may elicit or shape their support attempts? Likewise, examinations which link support attempts to objective indices of well-being (rather than simply the PWA's perceptions) would provide a more secure basis for making recommendations to network members. In conclusion, it is important to emphasize that friends and family clearly want desperately to be helpful and supportive to their loved ones with AIDS, but often they simply don't know how. Hopefully, the findings from this line of research can be used to provide information to counsel friends and family - to help build their support skills so they are more likely to behave in ways that truly are experienced as helpful. NOTES 1. We use the term 'family' inclusively to refer to both biological kin and other loved ones (e.g., partners) with whom the PWA feels bonded as family.

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REFERENCES Antonucci, T. C. and Israel, B. (1986) Veridicality of social support: a comparison of principal and network members' responses. Journal of Consulting and Clinical Psychology, 54, pp. 432—437. Barrera, M. and Ainlay, S. (1983) The structure of social support: a conceptual and empirical analysis. Journal of Community Psychology, 11, pp. 130—143. Beck, A. T. (1976) Cognitive Therapy and the Emotional Disorders (New York, Hoeber). Bloom, J. F. (1982) Social support, accommodation to stress and adjustment to breast cancer. Social Science and Medicine, 16, pp. 1329-1338. Britton, P. J., Zarski, J. J. and Hobfoll, S. E. (1993) Psychological distress and the role of significant others in a population of gay/bisexual men in the era of HIV. AIDS Care, 5, pp. 43-54. Dakof, G. A., Taylor, S. E. and Collins, R. L. (1987) Family support and the cancer patient. Paper presented at the Annual Meeting of the American Psychological Association, New York. Dunkel-Schetter, C. and Wortman, C. B. (1982) The Interpersonal Dynamics of Cancer: Problems in social relationships and their impact on the patient, in: H. S. Friedman and M. R. DiMatteo (eds), Interpersonal Issues in Health Care (New York, Academic Press), pp. 349-381. Fiore, J., Becker, J. and Coppel, D. (1983) Social network interactions: a buffer or a stress? American Journal of Community Psychology, 211, pp. 423—439. Gergen, K. J. (1977) The Social Construction of Self-knowledge, in: T. Mischel (ed.), The Self: Psychological and Biological Issues (Totowa, NJ, Rowman & Littlefield). Gottlieb, B. H. (1978) The development and application of a classification scheme of informal helping behaviors. Canadian Journal of Behavioral Science, 10, pp. 102—115. Green, G. (1993) Editorial review: social support and HIV. AIDS Care, 5, pp. 87-104. Hays, R. B., Chauncey, S. and Tobey, L. (1990) The social support networks of gay men with AIDS. Journal of Community Psychology, 18, pp. 374-385. Hays, R. B., Turner, H. and Coates, T. J. (1992) Social support, HIV symptoms and depression among gay men. Journal of Consulting and Clinical Psychology, 60, pp. 463—469. House, R. J. S. and Kahn, R. L. (1985) Measures and Concepts of Social Support, in: S. Cohen and S. L. Syme (eds), Social Support and Health (New York, Academic Press), pp. 83-108. Joseph, J. G., Caumartin, S. M. and Tal, M. (1990) Psychological functioning in a cohort of gay men. Journal of Nervous and Mental Disorders, 178, pp. 607—615. Kegeles, S. M., Coates, T. J., Christopher, A. and Lazarus, J. (1989) Perceptions of AIDS: the continuing saga of AIDS-related stigma. AIDS, 3 (suppl.), S253-S258. Lehman, D. R., Ellard, J. H. and Wortman, C. B. (1986) Social support for the bereaved: recipients' and providers' perspectives of what is helpful. Journal of Consulting and Clinical Psychology, 54, pp. 438-446. Mead, G. H. (1934) Mind, Self, and Society (Chicago, IL, University of Chicago Press). Nichols, S. E. (1987) An Overview of the Psychological and Social Reactions to AIDS, in: J. C. Gluckman and E. Vilmer (eds), Acquired Immunodeficiency Syndrome (Paris, Elsevier), pp. 261-269. Peters-Golden, H. (1982) Breast cancer: varied perceptions of social support in the illness experience. Social Science and Medicine, 16, pp. 483-491. Rook, K. S. (1984) The negative side of social interaction: impact on psychological well-being. Journal of Personality and Social Psychology, 46, pp. 1097-1108. Wortman, C. B. and Conway, T. L. (1985) The Role of Social Support in Adaptation and Recovery

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from Physical Illness, in: S. Cohen and S. L. Syme (eds), Social Support and Health (New York, Academic Press), pp. 281-302. Wortman, C. B. and Lehman, D. (1985) Reactions to Victims of Life Crises: Support that doesn't help, in: I. G. Sarason and B. R. Sarason (eds), Social Support: Theory, Research and Application (The Hague, Martinus Nijhof), pp. 463-489.

EIGHT Reliance by Gay Men and Intravenous Drug Users on Friends and Family for AIDS-Related Care Darcy Johnston, Ron Stall and Kevin Smith

INTRODUCTION The provision of care to people with AIDS in San Francisco, where approximately one out of 25 adults is HIV-seropositive (Surveillance Branch, 1992), places an enormous strain on the formal healthcare system (Pearlin et al., 1988; Anonymous, 1990; Osborn, 1992; Silverman, 1993). Among these strains are the public costs associated with providing medical care and hospitalization for people with AIDS (Bor et al., 1990; Anderson, 1991; Anonymous, 1992; Seage et al., 1993). Since universal healthcare insurance has yet to become a reality in the United States, the lack of guaranteed formal health care raises the question of how people who are living with AIDS manage to get their healthcare needs met, especially if they do not have health insurance. In this paper, we examine the extent to which people with AIDS in San Francisco rely on informal friendship and kin networks to obtain needed practical and emotional support. Despite the surprising paucity of data regarding the extent to which people with AIDS rely on friend and kin networks for support, several themes emerge from the existent literature. Caregivers often experience psychological distress, increased physical ailments, strained interpersonal relationships and financial difficulties (Adelman, 1989; Cowles and Rodgers, 1991; Frank, 1993; Turner et al., 1993). In the same way that people infected with HIV often experience a barrage of new emotions after a diagnosis, informal caregivers also experience shock, anxiety, sadness, helplessness and anger in response to the AIDS diagnosis of someone they love (Lippmann et al., 1993). To cope with these feelings, caregivers are said to adopt many of the same strategies as people with AIDS themselves. They take one day at a time, live more fully in the present and put energy into actualizing dreams (Brown and Powell-Cope, 1993). Coping mechanisms aside, the burden of AIDS care on friends and family members causes an economic and

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emotional strain (Murie, 1991; Ankrah, 1993) which can either weaken or strengthen existing kinship ties and social support networks. These qualitative generalizations, however, are drawn largely from the experience of caring for gay men with AIDS and describe the burden of caregiving largely from the perspective of the care provider. Recent work on care-seeking by gay men indicates that they rely to a large extent on friends and partners for care and to a much lesser extent on family members (Hays et al., 1990a; Hays et al, 1990b; Catania et al, 1992; McCann and Wadsworth, 1992). Turner et al. (1993) found that personal acceptance of one's gay identity and talking to family members about AIDS was positively correlated with support while depression and number of HIV symptoms were negatively correlated with support. Comparatively little attention has been devoted to how caregiving may (or may not) take on different characteristics among different populations affected by the AIDS epidemic. Furthermore, insufficient attention has been devoted to how people with AIDS themselves perceive the care that they receive through friendship and kin networks and how the person with AIDS participates in the informal caregiving process. Accordingly, we present in this paper a comparison of the extent to which gay men and intravenous drug users receive care for AIDS from their friendship and kin networks and their qualitative assessments of the care that they receive through these informal networks. METHODS Sampling Two separate convenience samples of gay-identified men with AIDS (n = 81) and intravenous drug users (IDUs) with AIDS (combined n = 88, with 52 men and 36 women) were drawn largely through physician referral at San Francisco General Hospital (see Johnston et al., 1994 for a more detailed description of sampling methods). Respondents were paid $15.00 for completing an interview, which on average took 90 minutes for trained interviewers to administer. Taperecorded interviews were conducted between November 1988 and May 1990. Both groups were diagnosed with AIDS, according to the pre-1992 CDC definition, for at least three months before being interviewed. Gay men with a history of intravenous drug use were excluded from the sample, as were intravenous drug users with a history of male homosexual activity during the last 10 years. These sampling procedures yielded samples that were not statistically different in terms of age (mean age of 30 for gay men, 32 for needle users) or self-reported level of health during the previous three months (mean of 4.5 for gay men and 4.4 for needle users on a 10-point scale where 10 is 'very healthy'). The samples were statistically different in terms of the length of time since their AIDS diagnosis (mean of 20 months for gay men and 15 for needle users,/value 4.5, P < 0.04), monthly income after taxes (at the lowest income level, 14% of the

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gay men make $500 or less per month while 41% of the intravenous drug users are at that income level, Pearson's chi square value for the entire income distribution = 22.6, P < 0.02), education (modal educational level for the gay men included some college, the modal educational level for intravenous drug users was high school graduate, Pearson's chi square for the entire educational distribution = 48.8, P < 0.001), and ethnicity (71% of the gay men and 52% of the intravenous drug users were white, Pearson's chi square value for the ethnicity distributions = 22.6, P < 0.01). The intravenous drug users were more likely to be African American (31%) than were the gay men (8%). Questionnaire Design and Measures Considerable care was taken in the construction of the research instrument to provide a mix of quantitative, closed-ended items (to identify what is different about the care-seeking patterns of intravenous drug users and gay men) and qualitative, open-ended items (to raise hypotheses concerning why identified differences may exist). Both gay men and intravenous drug users were asked to name all the friends and family members from whom they received help in the previous three months. Respondents were also asked how many times they received help from each individual in the last three months. A series of openended qualitative questions were then asked in order to elicit reasons for satisfaction or dissatisfaction with the care received from friends and family. Questions concerned: why the respondent was either still using, or not using, a particular person for help; what the respondents liked most and least about the care that they received; and the most important reasons that respondents did not get more care from particular individuals. Open-ended questions on overall satisfaction with care from friends and family were also asked. ANOVA was used to determine whether differences existed between these two groups of AIDS patients. Mean values are given with standard deviations in parentheses. The quantitative data were analysed through the use of an SPSS statistical package. Tapes of the interviews were transcribed and coded using the Ethnograph software package. The analysis of the quantitative and qualitative data was conducted independently by different members of the research team, to maximize the possibility that convergent and divergent themes would be inductively identified in the quantitative and qualitative analyses. This study was reviewed and approved by the Human Subjects committee at the University of California, San Francisco.

RESULTS Quantitative Comparisons of Reliance on Friends and Family for AIDS-related Care The first goal in the quantitative analysis was to determine if differences exist in the extent to which gay men and IDUs reported relying on friends and family

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to meet AIDS-related care needs. Analysis of the quantitative data indicated that neither gay men (mean = 0.30, s.d. = 0.64) nor intravenous drug users (mean = 0.21, s.d. = 0.63) relied to any great extent on kin for AIDS-related health care during the previous three months. Indeed, the mean scores indicate that less than one in three gay men received care from a family member. For IDUs, on average, less than one in five relied on a family member for care. These differences in reliance on family members for AIDS-related care were not statistically significant (/Value = 0.82, n.s.). Both gay men and IDUs relied to a greater extent on friends for AIDS-related health care. Furthermore, significant differences existed between the two groups regarding the extent that they relied on friends for care (f value = 6.44, P < 0.001). On average, gay men (mean = 1.17, s.d. = 1.28) had seen at least one friend for AIDS-related care in the preceding three months. In contrast, on average, not every IDU (mean = 0.73, s.d. = 0.91) had a friend help them with AIDS-related care during the previous three months. We also examined whether the number of reported visits for AIDS care by kin and family differed between the two groups. Regarding family members from whom respondents had received AIDS-related care in the last three months, IDUs (mean = 5.62, s.d. = 33.42) received more visits or phone calls from family members than did gay men (mean = 1.23, s.d. = 4.44). In contrast, the gay men received far more visits from their friends (mean = 14.72, s.d. = 48.36) than they did from their families (P < 0.001). They also received significantly more visits from their friends than did the IDUs (mean = 4.48, s.d. = 13.04). In sum, even though IDUs received more AIDS-related help from friends than family members, they still received more help from family members than did gay men. However, IDUs had significantly fewer friends and saw friends for AIDS care significantly fewer times than did gay men. Conversely, gay men received more help from friends than family and had significantly more contact with their friends than did IDUs. Qualitative Comparisons of Reliance on Friends and Family for AIDS-related care The following quotes, drawn from open-ended interview questions, are representative of the concepts which emerged from our analysis of the qualitative data. These should be read bearing in mind that many of the IDUs and gay men with AIDS that we interviewed were relatively isolated and had few friends and family members on whom they could rely for help. The quotes are presented here to illustrate what IDUs and gay men both liked and disliked about the care they received from friends and family. Their comments have been categorized, in keeping with the principles of grounded theory, into inductively-identified themes. The two major themes of instrumental and emotional support are consistent with the work of Stowe et al. (1993). The third category that we

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discuss - barriers to care — serves well to illustrate the similarities between people with AIDS and people with other chronic conditions. INSTRUMENTAL NEEDS

Relatives often bring food to sick family members, and even children also sometimes make sure their mother or father eats. One IDU said that while he was the only one who could keep himself from using drugs his friends made him eat when he went to visit them: Sometimes, I don't feel like eating, and they say, come on, try a little bit, which is good, because once I start not eating, I can't eat at all after a day, so [then] I'm not eating.

Gay men and IDUs also often relied on their friends to do chores like changing cat litter, washing clothes, cooking meals and cleaning. For example, one woman who was in the hospital said her sister not only took care of her children for her, she also cleaned her house: . . . in fact this morning I talked with her and she told me she was cleaning the house up so I wouldn't come home to a mess. I appreciate that. Right now I need her. Emotionally I need her too. We're very close . . . She's family and I feel that she'll always look out for my best interest. She's an intelligent woman and I know she's capable of making intelligent decisions.

People with AIDS also rely on their friends to take them to appointments, to the doctor, to the food bank, to the dentist, to the Social Security office, to the methadone clinic, or to the grocery store. One IDU claimed that he would be dead if his girlfriend had not taken him to the hospital: I was walking down the street going to cop me some drugs, some heroin because I was still sick, and I was walking, I had a long walk, and right about when I go to the dope sector, the dope man, I collapsed. And my girlfriend picked me up and felt that I was real warm. And she shot me out here to San Francisco General and she went in there and got a nurse and a wheelchair, and the nurse came out with a thermometer, took my temperature and it was 106. They packed me down with ice and gave me a large needle and filled me up with a lot of pain pills. And I was like in a slight coma for about two days before I come to. And a lot of doctors came to see me and tell me what I had. They told me that I had AIDS . . .

Despite the utility of instrumental care provided by friends or family, some respondents hinted that they were rationing care so as to not exhaust their caregivers. For example, a gay man said of his friends:

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Sometimes i feel like when I ask for help or I ask for something that I need I'm putting them off. Like if I ask them to help me go to the food bank or do that kind of stuff, I wonder should I be doing this or should I just take a car or work something else out? I hate to be a sick friend who's a pest.

Partners, as primary care-givers, are especially important to both gay men and IDUs, if possible, perhaps more so than they were before they were diagnosed. Respondents often stated that their partners have had a lot to do with their ability to cope with the virus. Many liked the protective concern that they received from their partners. A female IDU said: A lot of the time I'm nauseated or I'm on the toilet with diarrhoea or down on the energy . . . he's extremely protective of me. He makes sure I take all my meds every day. He cooks all the meals. He makes the bed. He does the laundry. He helps with my bath. . . . I'd never leave this room without him. Anywhere I go he takes me. And if he's got to go places and I don't feel like going, he'll make sure I have water by the bed and cigarettes, you know juice. He makes sure I've eaten before he leaves. You know just everything. He damn near pampers me.

Several respondents said that they received health care advice or even care from other people with AIDS. As one gay man put it: I have a few friends with AIDS, so if I have something wrong, they will give me whatever they have to fix it. Like, I have a rash on my scrotum, my friend is having the same problem, so he gave me some cream for it. And I had a really bad chest congestion, and another friend of mine that has AIDS gave me something he takes for it. EMOTIONAL CARE

For the most part, respondents appreciate the fact that their friends listen to them, are concerned about them, provide trust and support, and are understanding and compassionate. More commonly, gay men and IDUs expressed the desire to have someone to listen to them, hold their hand, tell them things are going to be all right, or just to spend more time with them. As from their friends, most gay men and IDUs would like their families to be more understanding, unconditionally loving, concerned, attentive, financially supportive, but mainly to just lend an ear. The rebellion is over and they would like to make amends before they die. Others would like 'to be able to meet people that could accept [their] condition'. Some parents were able to change their attitudes about AIDS before it was too late: When I first told my father, he says 'you don't have that damn AIDS, do you?' I says 'Yeah I do'. He says 'Ah, shit'. It was like a big burden on him. It was something that he had to be ashamed of. I said 'hey, look, I'm the

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one that got it'. I said, 'matter of fact, I don't even want to talk about it no more', and I hung up. And they called back and he has been having a, I guess, they have been talking to somebody about it, because he has been coming around, you know, with a lot of different attitude.

Some respondents appreciate the feeling that their friends accept them as they are, despite their illness. They tell them 'to keep [their] head[s] up'. Others appreciate the fact that when they are depressed and need someone to talk to, they can 'do all the talking' and their friends just listen or they can 'cry on their shoulder'. Others appreciate the reliability of their friends, that is, 'when they say they are going to do something, they do it'. Just as they do from their friends, gay men and IDUs appreciate simple things from their families. Most said that they liked just sitting and talking to members of their families and both groups appreciate phone calls from friends and family members who just ask how they are doing. One gay man said: Different people give you different emotions and so if there's something that I feel I need now which you can just get out of a conversation and the other person doesn't even know that the/re giving it to you and so you just go I think I'll call them up and we'll just have a nice long chit-chat and after it's over they had a nice talk with me and they feel good and then I've gotten whatever I needed.

Another respondent, a gay man, said: Most of my friends have the willingness to accept me as who I am and what I am, and accept the fact that I have an illness and their willingness to stick beside me. In fact one of my friends said, 'Roy, you still need to be loved'.

Sometimes receiving help is viewed by the recipient as beneficial to the caregiver. One male IDU, when asked why he was still getting help from his mother, said: If I told her no, it'd make her miserable. My sister said just let her do it because you know she's going to keep on pestering you, so just take it as just a visit, and she gave me my bath and she be talking to me just yaketyyaketyyak. And I hear water running, and I say she washing dishes and then all of a sudden I hear a washing machine and I say she's going into the closet to get my clothes. Things I could do myself. She be yappetyyappetyyap to keep my mind from saying 'you don't have to do that', but if I do, it hurts her feelings. It really does. It hurts her.

Both gay men and IDUs, however, are concerned about overloading their caregivers. One IDU thinks that her partner

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gets real scared sometimes. They call him the cheerleader. He gets his pompoms out and tries to cheer me up and there are days when it's like I need to have my fear validated rather than laugh about something I'm not finding funny at the moment . . . [but, I like it] for the same reason that I don't like i t . . . he'll make a joke in an effort to cheer me up and he never makes me feel like I'm less of a wife because of AIDS. He constantly tells me how special I am . . . [I am] overloading him. He's trying to like hold this whole thing together with the apartment and the car payments and he's been on disability for awhile . . . He's a workaholic trying to hold it all together.

BARRIERS TO CARE Although many respondents have received care from friends and family, they are sometimes blocked from receiving more by fear and ignorance on the part of others, by their own inability or desire to ask for help, by their desire to become more selective about who they spend time with, or by their friends' own illness or death. Some IDUs complain that their friends are not real friends, they are a bad influence, or that their friends still use drugs. One IDU said that his friends 'weren't really friends, they were drinking associates'. Another IDU said Tm glad that they dropped off when they did. They could have kept me on and killed me in the end.' Another IDU said that his friends 'would rather give you drugs, or get you drunk, or change the subject. I'm not looking for that now. I need support.' Others said that their friends dropped away because they don't want to spend the time. They don't even want to be a part of it. They have so much negative thoughts about that subject to where they just don't want to be a part of it.

Many respondents felt that their families did not care about them and that they had been abandoned. One IDU woke up in the hospital to find his family staring at him. The doctors told them instead of letting me tell them. And they were really looking at me like I had dog mess on me. And some of them turned it back and some didn't, but I learned to take it in my stride because I have a lot of friends at Shanti and through the First Pentecostal Church . . . they talk to me and help me a lot. And I got a lot of friends at the food plant and the clothing place. So I get quite a bit of help from the outside.

Many respondents also said that their friends are either scared, or ignorant, or afraid to get too close. More than one IDU said that his friendship network had decreased because he got tired of having to explain to everyone what AIDS was about. Some said words to the effect of 'they don't understand about the virus

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period'. Or 'they don't know how to help me'. One IDU said that 'they make AIDS seem like something that dirty people catch . . . that you got it ... because you eat out of the garbage can. . . . People are not sensitive.' A gay man experienced it somewhat differently: A couple of my friends still have the attitude . . . that if you have a disease, you're infected because you're promiscuous and you did something bad. I did something wrong. And sometimes in their conversations, I can hear that reflected in their conversations. Not about me, but about other people, in my presence.

Some respondents said that their families had not helped them more because of conservative social values, as expressed by the following: They couldn't handle the fact that I had this disease. They're all out-of-state, redneck Missouri-type people, and they just couldn't handle it, just couldn't . . . if I had AIDS, I had to be gay and it was bad enough that I was a dope fiend, but now I was a queer dope fiend. That type of mentality. They just couldn't handle it.

One woman went back to a small town in Wisconsin to see her mother and her best friend: I told my best friend that I was seropositive and provided her with brochures and stuff to look at. She wouldn't even look at them. She went around spraying the doorknobs with Lysol as I left, she was so freaked out. . . . I went back to Chicago for my friend Debbie's wedding . . . we were like sisters . . . and all of a sudden she cut me off, after fifteen years, poof . . . so I have no long-term friendships. . . . My friend Shirley, we had only been friends for about three years. She found out I was positive, that was it: I never saw her again.

Others said that many of their friends are dying or sick with the virus themselves and they do not like to bother them. Some said that their friends are disappearing and 'nobody's giving a damn'. One male IDU said that he came home one day to find that a friend had jumped out of the back window after he had found out his own diagnosis that afternoon. Another said that his friend was just too weak and fatigued to help him. Yet another said that he has held the hands of fourteen of his friends while they died. He 'used to say, as a care-giver, that I was teaching people how to die'. One IDU explained the situation as follows: We is all down in this dungeon, we all on our backs, they can't help me, they can't help me financially and stuff like that. But they could help me, or I could help them, when we are sitting and talking. You know, nobody else

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around, then we just open up and talk about this stupid virus, what we feel about it.

Many of the respondents living with AIDS would agree with the following quote: This epidemic has drained everybody so much, that they are all tired too . . . most of the old-timers are either infected or so drained as care-givers . . . we are at our limits.

In addition to their friends dying and general population-based fear and ignorance, many respondents felt that their personal natures block them from receiving more care because they do not like to ask for it. Many said that they would rather take care of tasks on their own because they grew up looking after themselves and want to continue to look after themselves now that they are ill. I have feelings of being inadequate, or not being able to take care of things myself. It's frustrating. I'm used to being pretty independent. And it's very difficult to have someone come in and have you sit there and say, 'Well do this'... or 'I need help'... I isolate [myself].

Several women appreciated the love they received from their children. One woman talked about trying to do her own job as a mother with a limited amount of time. She wanted to instil in her children the same fierce sense of independence which prevented her from asking for help. I've got my own impending doom to deal with and then trying to raise my daughters to be healthy adults, you know, physically and psychologically and emotionally and I feel like there's a time limit on me. And so I'm trying to do all these things and you know in the meantime I hear the clock ticking away in the background. I feel pressured, you know. I'm just trying to do so many things in a short time. . . . It's like I want to pound things into their heads. 'Listen to me!' And it's tough. It's tough. It's really hard. It's a big job I've got and all of us that are mothers go through this big job, but I just feel like mine's a little bit bigger because I've got more to tell them and less time to do it in. ... I'm trying to build their characters. I want them to have strong characters. There are certain things that I believe in morally and I'm passing those along to them. The Golden Rule and how to get along in life and what's expected of you out there in the real world and basically, I want them to have a strong character and I want them to be able to make it. I want to turn them into survivors, okay? I don't want them to be scared to turn a corner or to take a chance. I want them to be able to make it on their own, not depend on anyone, and can walk out and give the world hell.

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Some respondents even took on the position of the care-giver, but did not ask for care in return. A male IDU said: I don't really have friends. I mean, I do. . . . It's really hard. Like I have friends at work but that's sort of a different thing. I mean, there's a couple of guys at work I go out with. We'll go to dinner together or go to a movie together. . . . They're men. It's not like having a girlfriend where you can really sit down and cut it up. ... I spend time with them, but they're not really friends. . . . I've tried to get friendships going . . . but ever since I was a kid, I was the person that people would go to for advice and for help, and it is still that way. Whenever . . . I try and develop a friendship, I found myself being a caretaker. . .

Some respondents pointed out that they have become more selective about who they associate with now that they have a terminal illness. One gay man said: I've let go of some non-positive friendships. There's the one man that I've known for a couple of years and he was a wonderful person, very loving and came and visited me in the hospital quite frequently when I was there. But he was always coming from this sexual stance . . . and he was always verbalizing it, and it just made me very uncomfortable.

Some respondents still have not told their family or friends that they have the HIV virus. Some respondents said: 'They don't know that I have AIDS . . . I haven't told them'. One gay man complained about having to lie to his family about his AIDS diagnosis which was presented to his extended family as a cancer diagnosis: I'm tired of lying to my family. It's easier to lie in a letter, but when you're right there, it's going to be harder. It's just getting too complicated. And I'm tired of having to lie. I'm not ashamed of the disease I have. Or my lifestyle. So, if they can't deal with it, then I don't need them. That's how I feel.

It is particularly difficult to provide care to a child who has been diagnosed with a fatal disease when the parent and child have been unable to form a strong relationship prior to the illness. These difficulties are further compounded when the child gets sick as a result of behaviours to which the parent has long objected. In such cases, an AIDS diagnosis cannot be expected to heal an already alienated relationship. Some respondents said that because they were always the 'black sheep' of the family, they were not surprised by their family's neglect. From a male IDU: Basically I've always been a black sheep because my family is religious fanatics [Pentecostal] and I've always been the outcast so they tell me simply that you got what you asked for. . . . Hallelujah!

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A gay man said: I've learned to live without my family. Unfortunately, after 16 years, you learn that they are anti-gay. They don't like Blacks. They don't like Chicanes. They don't like anything unless it's white. Typically Southern family. If I'd married, had children, everything would have been fine. But by no means was I fine.

It was not uncommon for gay men and IDUs with AIDS to mention that their families of origin had problems of their own, sometimes related to issues of ageing among parents of children who are now middle-aged, which made it impossible for them to extend much care. For example, one gay man stated: I wish someone in my family could come here to see me. It's pretty impossible for any of them. My father just died about a month ago and my mother's very sick. They told her she probably won't live long, about another six months. My sister and I have never been close, but she has very small children that require all of her time.

Even when families did extend a helping hand, not all the care received was appreciated. Parents and other relatives were sometimes reported as being controlling or overly intrusive. One male IDU's mother made burial arrangements for him when he specifically said that he wanted to be cremated. Consequently, he was left with the added burden of undoing her arrangements. Another female IDU said that she did not like the help that she had received from her grandmother: I don't like her company because all she do is sit there and look at me like I'm crazy and talk 'if you wouldn't been around all those nasty dope shooting and prostitutes and pimps'. You know how they get when they getting aged and she's really something 'cause she's full-blooded Choctaw Indian . . . I despises her visits. I have never called her for anything. She just take it upon herself. Sometimes the doorbell rings and I've looked at people and I don't answer the door. . . . I love my grandmother, still close to her. But I can't stand the way she come over and do. She makes me miserable too and she makes me sick. Like I just want to go to the hospital. . . . She complains, throws nasty comments, and ask me all kind of questions, judges my friends. Lord knows. I can't take it no more. I'm serious.

DISCUSSION Gay men and intravenous drug users are the two groups hit hardest by the AIDS epidemic in both San Francisco and the United States as a whole. In many ways, gay men and IDUs with AIDS report the things that they need from friendship and kin networks to be the same. They both report needing supportive and concerned friends and/or family members who understand the realities of AIDS.

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Phone calls, visits, compassion, understanding without condescension, dependability and reliability are the qualities that were most appreciated. Sometimes all the ill person wants is someone to talk to about how they feel. They also need help with the practical matters of daily living: household chores; meals; transportation; financial assistance. In short, their needs may not be so different from those of anyone who has a debilitating illness and do not appear to differ substantially between gay men and IDUs. Those affected by AIDS, however, differ from many other sufferers of chronic conditions in that they are, on average, considerably younger. Stricken in the prime of their lives, they are not accustomed to having to depend on others for their needs, nor did they have the time to plan for these needs in the way that an elderly person might. Further, due to the stigmatization of both intravenous drug use and homosexuality, care networks may be abridged for AIDS patients. For these reasons, care provided through informal social networks may be particularly welcome to people living with AIDS. Despite having important needs, analysis of the qualitative data indicates that neither gay men nor IDUs relied to any great extent on family networks for AIDS-related social, emotional or practical care. Both groups relied to a greater extent on friends for AIDS-related social support and services. Gay men relied on more friends and had more contacts with their friends than did IDUs, while IDUs had more contacts with family members than did gay men and they saw family members more frequently. In sum, both groups relied more on friends than they did on family members, but gay men relied on friends far more frequently than did IDUs and IDUs had more contact with family members than did gay men. When help was provided by family members, both groups expressed appreciation about having received help with meals, general household chores, transportation and financial assistance. Based on the qualitative data, more female IDUs reported becoming closer to their mothers and appreciated having received instrumental help with childcare and household chores. As before noted, gay men received less help from their family members. This difference may reflect the tendency for gay men to live further away from their families, since many may have moved to San Francisco to be a part of its well-known gay community. While some IDUs have moved to San Francisco from the other parts of the country, many are from the San Francisco Bay area and thus may have more ready access to family members. The tendency for IDUs to see fewer family members, but to see more of the ones that they do see, may also reflect the relative lack of support that they received from friends. It may also reflect the tendency of female IDUs to live closer to their biological families and to have more frequent contact with them. Some IDUs expressed pleasure at the new-found love and support that they had received from their biological families, in particular their mothers and sisters. For the most part, however, having an AIDS diagnosis seems to have done little to change broken family relationships which had previously left some respondents

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feeling that they were the 'black sheep' of their families. Self-identified 'black sheep' felt rejected before they were diagnosed with AIDS and often still felt rejected after their diagnosis. Our analysis of the qualitative data led us to identify several barriers to the provision of care through social or kin networks. First, many people with AIDS are not used to asking for help and did not expect that they would have to do so at such a young age. They do not like being a burden on their friends and family and are concerned about overloading their support systems or perceived to be taking advantage of people who are providing them with care. We noted that some people with AIDS have devised conscious strategies to ration or distribute care burdens through social/kin networks, in order that individual providers may not become exhausted. Second, the social stigma surrounding AIDS sometimes leads to isolation. Some respondents felt that care was blocked owing to fear and ignorance on the part of friends and family. Third, many people with AIDS are diagnosed in their middle years, and so have parents who themselves are elderly or who are aproaching old age. Some respondents felt that their biological families had too many problems of their own and either could not afford to help them or were not capable of providing needed help. Fourth, the AIDS epidemic has not been randomly distributed throughout the population. Certain social networks in San Francisco have been devastated by this disease, leaving surviving members of these groups exhausted by a seemingly never-ending progression of sickness, debilitation and death among their friends and loved ones. Thus, some respondents reported that many of their friends were sick or dying themselves (or too emotionally exhausted by the AIDS epidemic) and could not provide as much help as they might have liked. Finally, some respondents choose to voluntarily cut themselves off from relationships which they perceived to be demanding, critical and/or destructive now that they were diagnosed with a serious illness. The burdens imposed by having AIDS can easily overwhelm the resources of an individual and can even overwhelm the resources of a healthcare system of a specific community. People with AIDS need both instrumental and emotional support, and in many cases these needs cannot be met by friends and family alone. These findings indicate that important barriers exist to the use of kin- or social-network based care for people with AIDS. Some of these barriers have to do with the stigmatization of AIDS, others have to do with the natural dynamics found within many families and friendships, others have to do with the extent to which AIDS has already burdened a particular community, and others have to do with limits imposed by the person with AIDS. It therefore cannot be assumed that social or kin networks can be used to provide necessary instrumental or emotional care to all people with AIDS. In particular, attempts to balance healthcare budgets by cutting back on home healthcare or volunteer services (in the expectation that gaps in such services would be met by kin or family) may well have very painful consequences. Finally, professional care providers should be aware of the dynamics found with the informal care network of their patients,

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and should be alert to the areas where social or kin networks cannot meet the basic needs of people living with AIDS.

REFERENCES Adelman, M. (1989) Social support and AIDS. AIDS & Public Policy Journal, 4, pp. 31-39. Anderson, H. J. (1991) Outpatients AIDS care squeezed by high costs, low payments. Hospitals, 65, pp. 40-42. Ankrah, E. M. (1993) The impact of HIV/AIDS on the family and other significant relationships: the African clan revisited. AIDS Care, 5, pp. 5-22. Anonymous (1990) Caring for AIDS caregivers. Dimensions in Health Service, 67, p. 6. Anonymous (1992) Outcomes and costs of inpatient AIDS care. Military Medicine, 157, p. A19. Bor, R., Elford, J., Hart, G. and Sherr, L. (1990) AIDS care: into the 1990s [Editorial]. AIDS Care, 2, pp. 3-4. Brown, M. A. and Powell Cope, G. (1993) Themes of loss and dying in caring for a family member with AIDS. Research in Nursing and Health, 16, pp. 179-191. Catania, J. A., Turner, H. A., Choi, K.-H. and Coates, T. J. (1992) Coping with death anxiety: helpseeking and social support among gay men with various HIV diagnoses. AIDS, 6, pp. 999-1005. Cowles, K. V. and Rodgers, B. L. (1991) When a loved one has AIDS: care for the significant other. Journal ofPsychosocial Nursing and Mental Health Service, 29, pp. 6—12. Frank, S. K. (1993) Long-term AIDS care given from the heart. American Nurse, 25, p. 14. Hays, R. B., Catania, J. A., McKusick, L. and Coates, T. J. (1990a) Help-seeking for AIDS-related concerns: a comparison of gay men with various HIV diagnoses. American Journal of Community Psychology, 18, pp. 743-755. Hays, R. B., Chauncey, S. and Tobey, L. A. (1990b) The social support networks of gay men with AIDS. Journal of Community Psychology, 18, pp. 374-385. Johnston, D. L., Smith, K. and Stall, R. (1994) Sources of formal and informal care among gay men and intravenous drug users in San Francisco. AIDS Care, 6, pp. 303—316. Lippmann, S. B., James, W. A. and Frierson, R. L. (1993) AIDS and the family: implications for counselling. AIDS Care, 5, pp. 71-78. McCann, K. and Wadsworth, E. (1992) The role of informal carers in supporting gay men who have HIV related illness: what do they do and what are their needs? AIDS Care, 4, pp. 25-34. Murie, R. (1991) AIDS: family matters. Nursing Times, 87, pp. 38-40. Osborn, J. E. (1992) AIDS and the politics of compassion. Hospitals, 66, p. 64. Pearlin, L. L, Semple, S. and Turner, H. (1988) Stress of AIDS caregiving: a preliminary overview of the issues. Death Studies, 12, pp. 501-517. Seage, G. R., Hertz, T., Stone, V. E. and Epstein, A. M. (1993) The effects of intravenous drug use and gender on the cost of hospitalization for patients with AIDS. Journal of Acquired Immune Deficiency Syndrome, 6, pp. 831-839. Silverman, D. C. (1993) Psycho social impact of HIV related care giving on health providers: a review and recommendations for the role of psychiatry. American Journal of Psychiatry, 150, pp. 705-712. Surveillance Branch, AIDS Office (1992) HIV Incidence and Prevalence in San Francisco in 1992: Summary Report from an HIV Consensus Meeting (San Francisco, San Francisco Department of Public Health).

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Turner, H. A., Hays, R. B. and Coates, T. J. (1993) Determinants of social support among gay men: the context of AIDS. Journal of 'Health and Social Behavior, 34, pp. 37-53. Turner, H. A., Catania, J. A. and Gagnon, J. (1994) The prevalence of informal caregiving to persons with AIDS in the United States: caregiver characteristics and their implications. Journal of Behavioral Medicine, 38 (11), pp. 1543-52.

NINE Perceptions of Social Support and Psychological Adaptation to Sexually Acquired HIV among White and African American Men Larry M. Gant and David G. Ostrow

In recent studies of the psychosocial coping activities of HIV-infected individuals, the presence and use of social support have gained importance as an indispensable component of psychological care (Flynn et al., 1991; Lackner et al., 1991; Ostrow et al., 199la; Reisbeck et al., 1991). In particular, much has been learned about the mental health and psychosocial impacts of the HIV epidemic among selfidentified gay men, primarily those residing in epicenters of AIDS such as San Francisco and New York. However, more information is needed regarding groups commonly ignored by current research. Few studies exist, for example, on the mental health of men who have sex with men but do not self-identify as gay or bisexual, of men of color who experience an increase in psychosocial pressures without a corresponding increase in community-based resources, and on the much broader socioeconomic distribution of men at risk of infection through homosexual activities (Mays and Cochran, 1987). For instance, one study of HIV-infected gay white men found relationships among active—behavioral coping, lower mood disturbance, satisfaction with social support, and higher self-esteem (Namir et al., 1987). In another study of 29 HIV-infected gay white men, however, active-behavioral coping was significantly related to greater mood disturbance and lower social support (Wolf et al., 1991). Finally, Hays et al. (1990) found friends and fellow persons with AIDS to be the greatest source of social support for a sample of 24 gay white men, with size of the social support network correlated with mental health measures. The assumption that the relationships between social support and perceptions of psychosocial and mental health functioning in the presence of AIDS are similar for African American and white men is unwise, problematic, and difficult

126 L. M. GANT AND D. G. OSTROW

to substantiate for three reasons. First, ethnic distinctions in help-seeking for mental health problems and physical problems are well documented (e.g., Dressier, 1985; Broman, 1987; Sussman et al., 1987). Second, African Americans and white people differ in the relative use of formal and informal social support systems (Broman, 1987; Neighbors and Jackson, 1987; Antonucci and Jackson, 1990). Third, African American men who have sex with men face issues that may be qualitatively different from those of their white counterparts, including differential expressions of homophobia in certain African American subpopulations (Friedman et al., 1987; Loiacano, 1989). Although this paper will provide brief examples to develop this point, we refer the reader to Dalton's (1989) classic article for a fascinating and more extended discussion. African American men who have sex with men have minimal interaction with existing social support networks within the gay white male community (Friedman et al., 1987). Research suggests that this population faces isolation and aliention stemming from real or perceived racism in traditional gay community organizations and depends more heavily on support systems oriented outside the white gay community, particularly family support systems (Icard, 1986; Mays and Cochran, 1987). However, many times family support for African American men is compromised; families may rally around when the physical illnesses of the person become manifest but criticize his sexual orientation and the route of transmission (Icard et al., 1992). The reliance of African American men with HIV on informal social support systems that hold negative or stigmatizing attitudes toward HIV infection, sexual orientation, and homosexual or bisexual behavior may negatively affect their psychosocial and mental health status (Dalton, 1989; Loiacano, 1989; Icard et al., 1992). We emphasize that there is no evidence whatsoever that homophobia is greater in African American than non-African American communities; rather, homophobia may be expressed quite differently in African American communities than in other communities. In many African American communities, the issue of homosexuality has been handled in a complex, ambivalent manner characterized by 'boisterous homphobic talk, tacit acceptance in practice, and a broad-based conspiracy of silence' (Dalton, 1989, p. 219). In studying the differences between white and African American men's patterns of social support, socioeconomic status (SES) factors must be controlled for, especially when race is considered a critical determinant of health or helpseeking behavior (Wilkinson and King, 1987). Rodin and Salovey (1989) observed the following: Race and ethnic variables are confounded with socioeconomic factors that may influence health and disease. Low socioeconomic status usually results in a less stable physical environment, a less stable and supportive social environment, altered perceptions of oneself and one's group, and altered capacities to adapt psychologically and behaviorally. (p. 549)

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However, Kessler and Cleary (1980) challenged the widely held belief that all racial differences in coping behavior and social support use are explainable by class or SES difference. It is therefore important that a study examining racial patterns of adaptation to stress and of social support separate SES effects and access to care from cultural factors independent of SES. The study described in this paper sought to examine the roles of social support in the mental health and behavioral adaptation of men with homosexually acquired HIV infection. The study also examined whether the sources, functions, or effects of social support differed among African American and white men with HIV. We hypothesized that social support from family would be strongly predictive of mental health outcomes among African American study participants but not white study participants, and that social support from friends would be strongly predictive of mental health outcomes for white men but not for African American men. The findings in this paper are based on data collected for a biracial cohort study of social support among gay and bisexual white and African American men in southeastern Michigan. The findings also reflect the experience of social support among this population. Considerable caution should be used in generalizing these findings to other gay and bisexual male populations and to female populations. METHOD Subjects All of the men were recruited from the HIV/AIDS program of the Henry Ford Hospital Medical Center of Detroit, Michigan. All had medical insurance coverage and volunteered for the study. A cohort of 40 men (20 African American and 20 white) with HIV infection but not AIDS participated in this study. Of this group, one participant chose not to complete major portions of either the baseline or nine-month follow up assessment procedures; his results were deleted from the analysis. Nine months after baseline assessment, follow-up evaluations were performed on 33 of the remaining 39 eligible study participants (17 African American, 16 white). Of the six dropouts, three had moved out of state, two were too ill to participate, and one could not be located. Measures Each subject was given intensive psychiatric, face-to-face neuropsychological, behavioral, and psychosocial assessments at entry (1989 to mid-1990) and were re-examined an average of nine months later. After physical examinations, blood draws, and interviews, each man was given a take-home self-report questionnaire assessing social support, mental health, and other psychosocial factors. During the follow-up examinations, several alternative measures of coping behaviors and

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styles and social support were pilot tested. The measures of particular interest for this investigation - those of social support and mental health - were administered only during the follow-up examinations and interviews. Social Support A modified version of the O'Brien and Wortman (1993) social support questionnaire was evaluated and used in this study. The modifications were made after the results of pilot study observations in this cohort showed differences in the direction of correlations between social support and mental health outcome measures (Ostrow et al., 1991b). Four subscales were derived: (1) social conflict (for example, 'Do you feel misunderstood by the people in your personal life?'), (2) objective social integration (for example, 'How active are you in the groups or clubs you belong to?'), (3) material social support from family (for example, 'Is there a family member who would help take care of you if you were confined to bed for several weeks?'), and (4) material social support from friends (for example, 'Is there a friend who would help take care of you if you were confined to bed for several weeks?'). Alphas for the overall social support questionnaire were 0.84 for the entire sample, 0.77 for the African American respondents, and 0.89 for the white respondents. Overall and race-specific alphas for each of the two material social support subscales were all greater than 0.80. Mental Health Three self-report measures that have been used extensively in studies of mental health and people with AIDS/HIV were used in this study: the Profile of Mood States (POMS) (Euros, 1978), the Beck Depression Inventory (Beck, 1979), and the UCLA Loneliness Inventory (Ostrow et al., 1991b). The Profile of Mood States is a 65-item self-report symptom scale measuring current mood or affect. It consists of six-factor analytically derived subscales for anxiety, anger, depression, confusion, fatigue, and vigor that are summed to generate a total mood disturbance score. Total, affective, and cognitive scale scores from the Beck Depression Inventory were used. Finally, the UCLA Loneliness Inventory was used because of prior findings of its correlation with overall mental health and risk behaviors among HIV-infected men (Pace et al., 1990; Rundell and Brown, 1990; Kelly et al., 1991). All three measures of mental health were normed with racially mixed groups including representative percentages of African American men and women (Beck, 1979; Rundell and Brown, 1990; Ostrow et al, 1991b). Statistical Methods For all subsequent analyses, Spearman correlations were first computed to identify social support measures that were most closely associated with the three general indexes of mental health. Z-transformed correlations were used to test

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129

Table 9.1 Demographic characteristics and CD-4 (T-helper cell) counts African American respondents 1/7=20)

White respondents (n=20) mean

s.d.

35.8 7.3 15.8 2.1 29.8 18.0 Suburban

35.2 15.1 24.7

77 2.1 16.3

268

601

320

Characteristic

mean

s.d.

mean

Age (years) Years of education Yearly income (thousands of $) Residence CD-4 count0

34.5 14.5 19.4

8.2 2.0 12.8

388

575

a

Urban 637

Total

s.d.

The CD-4 count is the number of white cells (T4 lymphocytes) present per cubic millimeter [sic] of blood.

whether correlations were significantly different between white and African American respondents.

RESULTS The African American and white men did not differ in mean age (35.2) or years of education (15.1 years) (Table 9.1). There was, however, a substantial if nonsignificant difference in reported average yearly income (African American, $19,400; white, $29,800). Differences in residential location reflect the geographic segregation commonly found in urban (African American respondents) and suburban (white respondents) areas. There were no significant differences in CD-4 counts, major depression status (Table 9.2), or infection classifications under the Centers for Disease Control Classification System (O'Malley, 1989) (Table 9.3) between the two subsamples. Correlations between Social Support and Mental Health Measures ALL PARTICIPANTS

In an analysis of the grouped data (Table 9.4), all correlations between social support and general mental health variables were statistically significant except one (material social support from family and anger/hostility). Not surprisingly, Table 9.2

Major depression states of cohort as determined by Beck Depression Inventory scale Baseline

Follow-up tn

To '

Tntnl

n

%

African American

No depression Depression within past 6 months Depression more than 6 months ago Depression unknown time ago

25 7 5

2

64 18 13 5

15 2 1 1

10 5 4 1

24 9 NA 0

Total

39

100

19

20

33

Characteristic

NA = not applicable.

African American

White

NA 0

11 5 NA 0

13 4 NA 0

100

16

17

White

n

% 73 27

130 L. M. GANT AND D. G. OSTROW

Table 9.3 Participants' HIV infection classifications using Centers for Disease Control (CDC) Classification System for HIV Infections Baseline

All

African American

Follow-up

All

African American

Characteristic

n

%

II (asymptomatic infection) III (persistent generalized lymphadenopathy) IV A (constitutional disease) IV B (neurological disease) IV Cl (specified secondary infectious diseases listed in the CDC surveillance definition of AIDS) IV C2 (other specified secondary infectious diseases) IV D (secondary cancers) IV E (other conditions)

15

39

7

8

3

9

2

1

7 0 0

18 0 0

2 0 0

5 0 0

11 0 2

34 0 6

4 0 1

7 0 1

0

0

0

0

2

6

2

0

17 0 0

43 0 0

10 0 0

7 0 0

14 1 0

42 3 3

9 0 0

5 1 0

Totals

39

100

19

20

33

100

18

15

White

n

%

White

social conflict correlated positively with increased tension/anxiety, depression, anger/hostility, and loneliness. Increased objective social integration, material social support from family, and material social support from friends were associated with lower scores across all indexes of mental health. WHITE PARTICIPANTS

The pattern of correlations between social support and mental health measures for the white participants was very similar to that identified for all subjects (Table 9.5). With the exception of the correlations between material social support from family and tension/anxiety, depression, and anger/hostility, the direction and significance of the correlations are the same for white respondents as for all respondents. Social conflict is again correlated with high scores on all measures, and, with the exceptions noted above, objective social integration, material social Table 9.4

Correlations of social support with mental health indicators for all subjects (n = 32) Type of social support

Mental health indicator

Social conflict

Objective social integration

Material social support: family

Material social support: friends

Tension/anxiety0 Depression0 Anger/hostility0 Depression15 Lonelinessc

0.546* 0.587* 0.679* 0.529* 0.596*

-0.399* -0.525* -0.339** -0.317** -0.643*

-0.326** -0.472* -0.256 -0.382* -0.346*

-0.491* -0.602* -0.397* -0.419* -0.499*

° Measure used was the Profile of Mood States (Buros, 1978). b Measure used was the Beck Depression Inventory (Beck, 1979). c Measure used was the UCLA Loneliness Inventory (Ostrow etal., 1991). * P< 0.05; **/>< 0.10.

PSYCHOLOGICAL ADAPTATION TO SEXUALLY ACQUIRED HIV

Table 9.5

131

Correlations of social support with mental health indicators for white males (n = 15) Type of social support

Mental health indicator

Social conflict

Objective social integration

Material social support: family

Material social support: friends

Tension/anxiety0 Depression0 Anger/hostility0 Depression13 Lonelinessc

0.823* 0.792* 0.834* 0.560* 0.781*

-0.619* -0.683* -0.597* -0.463** -0.719*

-0.358 -0.415 -0.486** -0.557* -0.466*

-0.852* -0.783* -0.719* -0.441* -0.663*

a

Measure used was the Profile of Mood States (Buros, 1978). b Measure used was the Beck Depression Inventory (Beck, 1979). c Measure used was the UCLA Loneliness Inventory (Ostrow etal., 1991). *P<0.05; **P<0.10.

support from family, and material social support from friends were significantly and negatively associated with all measures. AFRICAN AMERICAN RESPONDENTS

The pattern of correlations between social support and mental health measures differed dramatically for the African American respondents (Table 9.6). Correlations between social conflict and the mental health indexes were in the same direction and statistically significant, if somewhat weaker, than the correlations noted in the total sample and white subsample. Although the correlations between the remainder of the social support measures and the mental health indexes were in the same direction as the other patterns, these correlations were extremely weak or nonsignificant. In fact, with two exceptions — objective social integration with loneliness and material social support from family with depression - there were no significant correlations between measures of social support and measures of general mental health in the African American sample. Especially surprising, in light of the literature citing the importance of family in the social support networks of African Americans, is the lack of significant associations between material social support from family and tension/anxiety, anger/hostility, Table 9.6

Correlations of social support with mental health indicators for African American males (n = 17) Type of social support

Mental health indicator

Social conflict

Objective social integration

Material social support: family

Material social support: friends

Tension/anxiety0 Depression0 Anger/hostility0 Depression15 Lonelinessc

0.417** 0.487* 0.543* 0.473* 0.451**

-0.193 -0.326 -0.100 -0.261 -0.552*

-0.270 -0.473* -0.132 -0.219 -0.183

-0.149 -0.335 -0.234 -0.156 -0.289

° Measure used was the Profile of Mood States (Buros, 1978). b Measure used was the Beck Depression Inventory (Beck, 1979). c Measure used was the UCLA Loneliness Inventory (Ostrow etal., 1991). *P<0.05; **P<0.10.

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L. M. GANT AND D. G. OSTROW

depression, and loneliness. Only one association, between depression and material social support from family, was significant.

DISCUSSION People infected with HIV are at high risk for developing serious psychological and neuropsychological dysfunction (Fan et al., 1991). Such impairment can interfere with access to and use of resources critical to enhanced quality of life and increased longevity of the individual. In this study, social support was hypothesized to be a critical element of adaptive responses to HIV infection. Because social support can be obtained from informal self-help support groups, there is much potential for promoting such groups, either naturally as they occur in the individual's personal environment or purposefully as in specifically developed supportive interventions. At the outset of the study, we expected that because of the isolation from traditional gay organizations and ambivalent support networks identified in the literature, the African American respondents would have less access to resources and thus greater risk of developing mental illness than the white respondents. Given the role that social support appears to play in facilitating adaptive mental health among men with HIV, and given the acknowledged importance of the family as a primary social support group among African American populations, we expected to find a strong inverse relationship between the indictors of mental health and reported social support from the family. We did not expect to find relationships between mental health indicators and social support from friends for the African American men in the sample. We expected to find exactly the reverse relationship for the white men in the sample. That is, we expected that social support and mental health outcomes would be found among friends and not family. To some extent, our expectations for the white men in the sample were confirmed. The relationship between mental health indicators and material social support from friends was as anticipated; material social support was strongly associated with lower reported scores on all mental health indicators. The pattern, while evident, was weaker for material social support from families. Our expectations for the African American men in the sample were only partially confirmed. We expected and found weak, nonsignificant relationships between the mental health indicators and material social support from friends. We also expected to find strong inverse relationships between social support from family and mental health indicators. We believed that absence of social support would lead to mental illness or would at least be correlated with mental illness. Of all the expected associations, we thought this would be the most obvious and hence the strongest relationship. Instead, we found a pattern of weak, nonsignificant relationships (with the previously mentioned exception of relationship between depression and material social support from the family). Why did this occur?

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Unfortunately, methodological limitations of the current study do not allow us to answer this question. We provide an extended discussion of seven major methodological shortcomings in the hope that future investigations will address and resolve these limitations and conjectures. First, it is possible that the measures of social support we used were not sensitive to the various dimensions of social support from either friends or family for African American men. Other models of social support reflect alternate dimensions of support (for example, emotional support or psychological support). Perhaps African Amerian men with sexually acquired HIV do not seek material, resource-based forms of social support, but rather more emotional or psychological kinds of support, from their families. Investigation with an instrument that allows respondents to describe the type of social support they receive from their families may provide a better, clearer indicator of social support. The authors are currently field-testing such an instrument (Antonucci, 1986) with small groups of African American and white men with sexually acquired HIV. Second, African American men may feel so conflicted by the compromised nature of social support (that is, support provided for the disease but not for the route of acquisition) that they prefer not to seek material social support from their families (or, apparently, their friends). We noted high associations between social conflict and the mental health measures and the lack of associations between material social support and mental health. It is possible that African American men may feel so conflicted that they perceive receiving social support as more painful than beneficial (Loiacano, 1989). Third, the relationship between social support and mental health could be mediated by a third factor - the stage of disease. These men tested positive for HIV but were asymptomatic. The African American men may simply have decided that they were not sick enough to call on the material social support resources of their families. It is possible that the progression of the disease may be associated with the use of material social support. The more the disease overtly manifests itself in the symptomatic stages, the greater the perceived need for social support. Fourth, the African American men with sexually acquired HIV may have feared the disclosure of the disease and the route of transmission — in this case acquired by having unprotected sex with HIV-infected men - more than their white counterparts in the study. Several qualitative studies and anecdotal reports suggest that African American men who have sex with other men may consider or identify themselves as bisexual rather than gay. Alternately, African American men who have sex with other men may choose not to assign themselves with the value-laden and lifestyle-implicative terms 'gay' or 'bisexual' but rather use a simple description of the behavior (for example, having sex with men). African American men who have sex with other men, then, may often reject the gay or bisexual indicator of sexual expression in favor of the behavioral description. However, although they themselves may be comfortable with this self-identification they may feel that family and friends (at least female friends

134 L. M. GANT AND D. G. OSTROW

and male friends who do not have sex with men) would perceive them as gay or homosexual and therefore disapprove of them or even terminate the relationship. The fear of disclosure of this route of transmission may therefore prevent African American men from seeking either social support in general or material social support in particular from family or friends. Fifth, it is possible that the significant associations between social conflict and general mental health outcomes reported by these African American men reflected more the general stresses and conflict of being African American in the United States rather than either specific stresses related to sexual expression ('outness') or HIV/AIDS-related stresses. Unfortunately, we did not ask questions about AIDS ethnocentrism (race-relevant beliefs that African American men may hold regarding their risk of HIV/AIDS) (Peterson et al., 1992). Participants responded to several items addressing HIV/AIDS-related stresses, but these items had very low interitem reliability and thus were not reported. Sixth, it is possible that socioeconomic status determines access to social support. This possibility is raised given the previously cited comments of Rodin and Salovey (1989) and Kessler and Cleary (1980). Because of the careful selection of an economically and educationally matched sample, and given the lack of significant educational and economic differences between the white and African American gay and bisexual men, it seems that this conjecture has been adequately resolved and needs no further consideration for this study. Finally, it is possible that the African American men may have lied about their mental health. Certainly, the issue of African Americans disclosing information to white interviewers is a serious methodological problem (Mays and Jackson, 1991). However, in this project the interviewer knew the respondents extremely well and had worked for several years in the clinic. It is hoped that the African American men did not perceive him as a stranger collecting information and therefore gave honest answers. Additionally, if one considers as valid the notion that the African American men lied about their mental health, one would wonder about the extent to which they lied in their other responses to the survey. This study, although largely descriptive in nature, has several practice implications. Readers of past and current studies that indicate a relationship between social support and mental-health status of men with HIV have developed both formal and informal social support groups. Without a better understanding of the types of social support, it is conceivable that support groups that are avowedly 'supportive' may actually have negative consequences, especially if the social support is focused on the identification of social conflict issues (for example, 'no one understands me', 'I feel misunderstood by my friends' 'I feel misunderstood by my family'). Support groups for HIV-positive African American and white men who have acquired HIV through unprotected sex with other men may be more heterogeneous than initially thought. The distinctly different perceptions of sexual expression held by African American and white men may lead to conflict over several topics. For instance, the issue of 'coming out' may be much more

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135

problematic or irrelevant for African American men than white men, simply because the definition of sexual expression is not desired. Social workers who work with African American men with sexually acquired HIV need to explore fully their client's notions of social support, and if a family of origin or choice is identified as a potential resource, the worker may wish to explore the kind of support desired by the client from his family. Material social support may not be desired at the current time. Likewise, the social worker working with such clients may wish to pay more attention to the clients' stage of disease. If the client declined the support of the family in earlier, asymptomatic stages of the disease, it is possible the client may reconsider seeking family social support as the disease moves to the symptomatic stages. Finally, this study reflects the need to understand what social support is and what it means, both theoretically and practically. At the very least, the worker should endeavor to understand what social support means for African American and white men with sexually acquired HIV and to assume neither that all social support is good and positive social support nor that what is perceived as social support for some is equivalently perceived as social support for all.

REFERENCES Antonucci, T. C. (1986) Measuring social support networks: hierarchical mapping technique. Generations, 10, pp. 10-12. Antonucci, T. C. and Jackson, J. S. (1990) The Role of Reciprocity in Social Support, in: B. R. Sarason, I. G. Sarason and G. R. Pierce (eds), Social Support: An Interactional View (New York, John Wiley & Sons), pp. 219-250. Beck, A. T. (1979) Cognitive Therapy of Depression (New York, Guilford Press). Broman, C. L. (1987) Race differences in professional help seeking. American Journal of Community Psychology, 15, pp. 473-489. Euros, O. K. (ed.) (1978) The Eighth Mental Measurements Yearbook (Highland Park, NJ, Gryphon Press). Dalton, H. L. (1989) AIDS in blackface. Daedalus, 118, pp. 205-227. Dressier, W. W. (1985) The social and cultural context of coping: action, gender, and symptoms in a southern black community. Social Science and Medicine, 21, pp. 499—506. Fan, H., Connor, R. F. and Villarreal, L. P. (1991) The Biology of AIDS (Boston, Jones & Bartlett). Flynn, R., Smith, A. P., Bradbeer, C. and Watley, J. (1991) The role of social support in modifying the relationship between stress and self-reported physical symptoms, cognitive deficits and psychopathology in gay men with HIV infection: a pilot study. Paper presented at the First International Conference, Biopsychosocial Aspects of HIV Infection, Amsterdam, The Netherlands, August 1991. Friedman, S. R., Sotheran, J. L. and Abdul-Quader, A. (1987) The AIDS epidemic among blacks and Hispanics. Milbank Quarterly, 65, pp. 455-499. Hays, R. B., Chauncey, S. and Tobey, L. A. (1990) The social networks of gay men with AIDS. Journal of Community Psychology, 18, pp. 374—385. Icard, L. (1986) Black gay men and conflicting social identities: sexual orientation versus racial identity. Journal of Social Work and Human Sexuality, 4, pp. 83-93.

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Icard, L., Schilling, R. F., El-Bassel, N. and Young, D. (1992) Preventing AIDS among black gay men and black gay and heterosexual intravenous drug users. Social Work, 37, pp. 440-445. Kelly, B., Dunne, M., Raphael, B. and Bickham, C. (1991) Relationships between mental adjustment to HIV diagnosis, psychological morbidity and sexual behaviour. British Journal of Clinical Psychology, 30, pp. 370-372. Kessler, R. C. and Cleary, P. D. (1980) Social class and psychological distress. American Sociological Review, 45, pp. 463-478. Lackner, J. B., Joseph, J. G., Ostrow, D. G., Kessler, R. C. and O'Brien, K. (1991) Predictors of psychological distress in a cohort of gay men: the role of social support and coping. Paper presented at the First International Conference, Biopsychosocial Aspects of HIV Infection, Amsterdam, The Netherlands, August 1991. Loiacano, D. K. (1989) Gay identity issues among black Americans: racism, homophobia and the need for validation. Journal of Counseling and Development, 68, pp. 21-25. Mays, V. M. and Cochran, S. D. (1987) Acquired immunodeficiency syndrome and black Americans: special psychosocial issues. Public Health Reports, 102, pp. 224—231. Mays, V. M. and Jackson, J. S. (1991) AIDS survey methodology with black Americans. Social Science and Medicine, 33, pp. 47-54. Namir, S., Wolcott, D. L. and Fawzy, F. (1987) Coping with AIDS: psychosocial and health implications. Journal of Applied Social Psychology, 17, pp. 309-328. Neighbors, H. and Jackson, J. S. (1987) Barriers to medical care among adult blacks: what happens to the uninsured? Journal of the National Medical Association, 79, pp. 489-493. O'Brien, K. and Wortman, C. B. (1993) Social relationships of men at risk for AIDS. Social Science Medicine, 36, pp. 1161-1167. O'Malley, P. (1989) The AIDS Epidemic: Private Rights and the Public Interest (Boston, Beacon Press). Ostrow, D. G., Fraser, K., Nelson, C. Schork, T., Thomas, C., Whitaker, R., Gant, L. and Fisher, E. (199la) Social support and mental health among a biracial cohort of HIV-infected homosexual/bisexual men. Paper presented at the First International Conference, Biopsychosocial Aspects of HIV Infection, Amsterdam, The Netherlands, August 1991. Ostrow, D. G., Whitaker, R. E., Frasier, K. and Cohen, C. (1991b) Racial differences in social support and mental health in men with HIV infection: a pilot study. AIDS Care, 3, pp. 55-62. Pace, J., Brown, G. R., Rundell, J. R. and Paolucci, S. (1990) Prevalence of psychiatric disorders in a mandatory screening program for infection with human immunodeficiency virus: a pilot study. Military Medicine, 155(2), pp. 76-80. Peterson, J. L., Coates, T. J., Catania, J. A., Middleton, L., Hilliard, B. and Hearst, N. (1992) High risk sexual behavior and condom use among gay and bisexual African-American men. American Journal of Public Health, 82, pp. 1490-1494. Reisbeck, G., Buchta, M., Hutner, G., Oliveri, G. and Schneider, M. M. (1991) Coping, social support, and well-being of HIV-infected homosexuals, hemophiliacs and women: a qualitative-quantitative comparison. Paper presented at the First International Conference, Biopsychosocial Aspects of HIV Infection, Amsterdam, The Netherlands, August 1991. Rodin, J. and Salovey, P. (1989) Health psychology. Annual Review of Psychology/, 40, pp. 533-579. Rundell, J. R. and Brown, G. R. (1990) Persistence of psychiatric symptoms in HIV-seropositive persons. American Journal of Psychiatry, 147, pp. 674-675. Sussman, L. K., Robins, L. N. and Earls, F. (1987) Treatment-seeking for depression by black and white Americans. Social Science and Medicine, 24, pp. 187-196.

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Wilkinson, D. Y. and King, G. (1987) Conceptual and methodological issues in the use of race as a variable: policy implications. Milbank Quarterly, 65, pp. 56-71. Wolf, T. M., Balson, P. M., Morse, E. V., Simon, P. M., Gaumer, R. H., Dralle, P. W. and Williams, M. H. (1991) Relationship of coping style to affective state and perceived social support in asymptomatic and symptomatic HIV-infected persons: implications for clinical management. Journal of Clinical Psychiatry, 52, pp. 171-173.

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PARTNERS

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TEN

Family Support for Heterosexual Partners in HIV-Serodiscordant Couples Marianne Foley, Joan H. Skurnick, Cheryl A. Kennedy, Ramona Valentin and Donald B. Louria

INTRODUCTION As the HIV/AIDS pandemic progresses and HIV-seropositive individuals contend with devastating illness, it seemed timely to inquire if they receive support from family members. It was also important to develop a normative idea of how much family support exists and from whom it emanates. In heterosexual serodiscordant couples (one HIV-positive, one HIV-negative) in durable domestic partnerships the impact of HIV falls on both sexual partners. Over time, support and care have the greatest impact on the HIV-negative partner. Because HIV/AIDS affects relatively young people, the burden can be immense in proportion to maturity and resources. Couples contend with HIV disease within a social background in which beliefs and expectations about the family's role in the illnesses of its members are superimposed on societal attitudes toward sexually transmitted disease, sexuality and substance use (Brandt, 1987; Sherlock and Dingus, 1988; Anderson, 1989; Boyd-Franklin and Aleman, 1990; Levine, 1990; Nelkin et al, 1991). This report is part of a longitudinal epidemiologic study of clinical, behavioral and psychosocial factors associated with HIV transmission between heterosexual partners in HIV-discordant couples in New Jersey, where the epidemic is concentrated in eastern—urban and suburban areas. The research objective was to determine the extent of awareness of HIV seropositivity and perceived support among family members for partners in serodiscordant heterosexual couples. METHODS We analyzed family member awareness and perceived support for 214 adult heterosexual partners from 109 serodiscordant couples interviewed between

142 M. FOLEYe/o/.

August 1990 and June 1992. Referrals of known serodiscordant couples came from infectious disease clinics, private physicians, counseling and testing sites, drug treatment clinics and community social service agencies. Because heterosexual transmission was the principal focus of research, HIV-negative partners with other transmission risks (injecting drug use or male homosexuality) were excluded. Due to confidentiality restrictions, information on couples screened but not enrolled was not retained. Couples were screened for willingness to participate and eligibility. Partners were interviewed separately to ensure confidentiality. At entry, written informed consent was obtained, baseline social/demographic questionnaires were administered, and medical history, physical examination and laboratory testing were conducted for both partners. While the HIV serostatus of both partners was known prior to study entry, both were retested using enzyme-linked immunoabsorbent assay; seropositive tests were confirmed by Western blot. Partners received pre-test counseling in accord with New Jersey Department of Health policy. At the beginning of interviews there were few support groups for HIV-positive individuals. Later, many support groups existed in the region. Couples were referred to support groups by field staff throughout the study. All HIV-seronegative partners remained seronegative throughout the 23 months of analysis. Flow cytometry immunophenotyping was performed to obtain counts for CD4+ T cells. The clinical status of HIVpositive partners was classified by Centers for Disease Control and Prevention stage of disease criteria (Centers for Disease Control and Prevention, 1992). Duration of knowledge of infection was established from baseline data. A family support questionnaire was administered once within the first 6 months of the study to ask about the support experienced from family members. Partners were first asked if a particular family member was aware that one partner in the couple was HIV-infected. Response choices were: 'not applicable', 'no' and 'yes'. A response of 'not applicable' indicated there was no particular family member to inform (for example, no siblings or living parents). A response of 'no' indicated the family member was not aware of HIV infection. If a 'yes' response was given partners were asked to describe the family member as 'not supportive', 'not very supportive', 'moderately supportive' or 'very supportive'. Analyses of family members were confined to the primary relationships of parents and siblings. Other relatives, with family relationships unspecified, were included only in a final analysis of overall family member support for each partner. Data on children were excluded because the questionnaire was not appropriate for children. Family members aware of HIV and described as 'moderately' or 'very supportive' were categorized as 'supportive', and those 'not supportive' or 'not very supportive' as 'non-supportive'. Stastical analysis Statistical analyses addressed the following: (1) what characteristics of HIVserodiscordant partners are associated with family member awareness and

FAMILY SUPPORT FOR HETEROSEXUAL PARTNERS

143

Table 10.1 Sociodemographic characteristics of heterosexual partners in discordant couples. HIV-positive Women

Men

Women

24 30

23 32

85 35

5 12 7 0 20,000-29,999

5 10 6 2 20,000-29,999

13 51 21 0 20,000-29,999

High school

High school

High school

Men

82 Number (n= 214) 38 Mean age (range, 20-66 years) Frequency/race 15 Black 41 White 24 Hispanic 2 Asian/other 20,000-29,999 Median household income (range, < $5,000 to > $75,000) High school Median education (range, < high school to graduate school) Number (%) IDU* 57(70) CDC stage 43* A (asymptomatic) 17 B (symptomatic) C (AIDS) 15

HIV-negative

7(29) 14* 3 6

Of

Of

-

-

* At some point since 1978; f HIV-negative partners with a history of injecting drug use were excluded from study; * missing values for seven men, one woman. IDU = injecting drug user; CDC = Centers for Disease Control and Prevention.

support; (2) does familial relationship (for example, father) affect awareness and support; and (3) do partners in HIV-serodiscordant couples have at least one family member they perceive as supportive. Analyses were conducted with the individual as the unit, because questions referred to support experienced by individual partners. Sociodemographic and clinical characteristics were evaluated as correlates of family member awareness or support. Characteristics included: HIV serostatus, sex, age, race, household income, education, injecting drug use, clinical status of HIV-positive partners, and duration of knowledge of infection. Pearson's j^2, McNemar's and Fisher's exact test were used to analyze two-way associations between frequencies of aware and supportive relatives and sex, HIV status, race, and family relationships. Logistic regression and log-linear models were used to evaluate continuous variables and correlates of awareness and support. Rank tests were used for group comparisons of ordered categorical variables. The criterion for statistical significance was P < 0.05; all P values report two-sided results. SAS statistical packages (SAS Institute, 1988) and StatXact (Mehta and Patel, 1991) were used for all analyses.

RESULTS Cohort Characteristics A Sociodemographic and clinical description of the cohort is shown in Table 10.1. Data on four partners in 109 couples were missing due to illness or severed

144 M. FOLEYe/o/.

Table 10.2 Family member awareness of HIV and support of heterosexual partners n(%)

HIV+ men (n = 82) Aware and supportive Aware and nonsupportive Not aware Not applicable HIV+ women (n = 24) Aware and supportive Aware and nonsupportive Not aware Not applicable HIV- men (n = 23) Aware and supportive Aware and nonsupportive Not aware Not applicable HIV- women (n = 85) Aware and supportive Aware and nonsupportive Not aware Not applicable

Mother

Father

Sister

Brother

31 (40) 4(5) 33 (42) 10(13)

19(26) 7(10) 33 (45) 14(19)

33 (43) 3(4) 32 (42) 8(11)

27 (36) 3(4) 35 (47) 10(13)

18(78) 0(0) 4(17) 1(4)

7(32) 4(18) 8(36) 3(14)

12(57) 4(19) 3(14) 2(10)

9(39) 3(13) 7(30) 4(17)

8(35) 1(4) 12(52) 2(9)

3(14) 2(9) 11(50) 6(27)

4(18) 1(5) 13(59) 4(18)

6(29) 1(5) 12(57) 2(10)

22 (28) 11(14) 40(51) 5(6)

16(22) 4(5) 42(57) 12(16)

27 (36) 5(7) 39 (52) 4(5)

16(21) 7(9) 45 (60) 7(9)

partnerships before 6-month follow-up. Racial distribution of partners was 18% black, 53% white, and 27% Hispanic. Income range, education achievement and ages reflect both urban and suburban participants. The majority of HIV-positive partners were asymptomatic (category A) at study entry. AWARENESS AND SUPPORT Data for awareness of parents and siblings are shown in Table 10.2. Higher proportions of HIV-positive partners, particularly women, reported more frequently aware parents and siblings than HIV-negative partners. Being an HIVpositive woman was associated with more frequent awareness of mothers (P = 0.04). All HIV-positive partners more frequently had aware sisters than HIVnegative partners (P = 0.01). Neither HIV positivity nor sex affected the frequency of awareness of fathers and brothers (P = 0.33 and P = 0.30, respectively). Consistently lower proportions of HIV-seronegative partners had aware family members. Sex and education were not significant factors. Among HIV-positive partners there was a tendency for fewer to have an aware family member as education increased (less than high school (92%) versus high school (85%) versus more than high school (70%); P = 0.02). Age, household income, injecting drug use, and duration of knowledge of infection showed no statistical association with family member awareness or support for any subgroup.

FAMILY SUPPORT FOR HETEROSEXUAL PARTNERS

145

Table 10.3Family member support.* n(%)

HIV-positive men (n = 82) HIV-positive women (n = 24} HIV- negative men (n =23) HIV-negative women (n = 85)

None

At least one*

20 (24) 6(25) 1 1 (48) 36 (42)

62 (76) 18(75) 12(52) 49 (58)

Includes parents, siblings and other adult relatives. * Twenty partners (9%) received support only from other unspecified relatives.

Of asymptomatic partners, 77% reported family member awareness. Awareness increased to 91% in symptomatic (category B) or with AIDS-defining (category C) stages of disease, but these differences were not significant (P = 0.07). Presence of Support Percentages for each subgroup of 'nonsupportive', 'not aware' and 'not applicable' yielded data for parents and siblings from whom support could not be obtained. These percentages ranged in HIV-positive partners from 22 to 74%. Among HIV-negative partners percentages were far higher and ranged from 65 to 86%. Regardless of specific familial relationship, family members who became aware of HIV in the couple were highly likely to be perceived as supportive by all partners of either sex (range over subgroups, 75-87%). Subgroup differences were not significant. Thus, absence of support reflected lack of awareness. Matched comparisons were conducted to ascertain whether specific intrafamilial relationships were associated with awareness and support. Within the same family mothers were more frequently aware and supportive than fathers (P = 0.0001 and P = 0.0001, respectively). Sisters were reported as more often aware and supportive than brothers (P = 0.02 and P = 0.01, respectively). Support was analyzed across parental, sibling and other relative categories (Table 10.3) to determine if each partner had at least one supportive family member. HIV-positive partners were significantly more likely to have at least one supportive family member than HIV-negative partners (P = 0.01). HIV-positive partners also experienced significantly broader family support: 53% (56 out of 106) reported more than one category of family member to be supportive compared with 31% (34 out of 108) of HIV-negative partners (P = 0.002). Sex differences were not significant. Race and serostatus were statistically significant characteristics among the 24-48% partners without any support. Black HIV-negative men and women were less likely to have at least one aware family member compared with whites and Hispanics (39 versus 69 versus 81%, respectively; P = 0.02), and consequently were less likely to have at least one supportive family member.

146 M. FOLEYe/o/.

DISCUSSION It is not known what constitutes adequate family-member awareness and support. In this cohort, HIV-positive status and female sex were determinants of familymember awareness and support. Most partners have at least one aware and supportive primary relative, particularly HIV-positive partners whose family members are more often aware than their seronegative partners. However, the extent of family support is often meager, as one-quarter of HIV-positive partners and nearly half of HIV-negative partners have no support. Dearth of support was particularly marked for black HIV-seronegative partners. Mothers and sisters are strongly perceived as more supportive than fathers and brothers. Clearly a family member cannot provide supportive activities if unaware of the problem. Potential support, in effect, is truncated by lack of knowledge. However, when informed of HIV, family members are far more often perceived as supportive than nonsupportive. Reluctance to disclose an HIV-positive status to family members is associated with increasing education of the HIV-positive partners in this cohort. This may reflect a greater sense of control, a desire for more privacy, or even embarrassment at becoming infected despite greater education achievement. Field staff have noted that some couples delay disclosure until hospitalization, or until wasting alters physical appearance, or depression and/or aberrant behaviour reveals HIV invasion of the brain. This observation is confirmed by increasing family awareness as the disease progresses. Black HIV-negative male and female partners may receive significantly less support than whites or Hispanics due to black family decimation from successive epidemics of poverty, injecting drug use and HIV, particularly in urban areas, and differing norms of privacy. Disclosing an HIV-positive status is a dreaded task (Nichols, 1985; Abrams et al, 1986; Tiblier et al, 1989; Wadland and Gleeson, 1991; Walker, 1991a). Family member reactions to disclosure are not much different from those of society as a whole: fear of contagion, concern about sexual transmission, stigmatization, anger, confusion, grief, conflict, and viewing the disease as a punishment for past behaviors (Holland and Tross, 1985; Frierson et al., 1987; Brandt, 1988; Dailey, 1990). Families develop considerable sympathy for HIVpositive members as well as despair at unacceptable loss; these emotions compete with hope for a cure. Family members may choose not to engage in supportive activity or may respond with remarkable support, falter, or not understand what to do (Walker, 1991b). Field staff have observed that most couples meet the demands of their situation quite well but need support at different stages in the illness of the positive partner. HIV-positive partners generally adapt to disease progression during transitions from being relatively young, healthy persons to being made dependent by illness, experiencing declines in economic production, enduring changes in self-image and actual physical appearance. They struggle for normal appearance and activity as long as possible, balancing discouragement against hope, often

FAMILY SUPPORT FOR HETEROSEXUAL PARTNERS

147

maximizing the time with loved ones and compressing desired life activity into a shorter time span (Kubler-Ross, 1970; Walker, 1991; Marks and Dilley, 1992; Dowd, 1993). The HIV-negative partner moves into caregiver and management roles, becoming the principal economic provider, and often the sole parent. Caring for and losing a relatively young partner close to one's own age can be especially grievous. As disease progresses, HIV-negative partners experience increased demands and often physical and mental exhaustion. If they have not sought out and obtained support, their ability to carry out necessary responsibilities may be substantially impaired. Family members can provide a base of support that alleviates many of these difficulties (Ekberg and Foxall, 1986; Eidson, 1988; Friedman et al., 1988; Macklin, 1989; Hepworth and Shernoff, 1989; Sussman, 1989; Bor et al., 1991; Brown and Powell-Cope, 1991; Yarling, 1992). There are certain limitations to this report. We did not investigate whether partners selectively informed family members who were perceived as potentially supportive, nor did we examine the perceived quality of relationships that may foster disclosure. We may have underestimated family support by not examining whether partners received support from each other's family or from specific extended family members. We have no comparison groups of seroconcordant HIV-positive couples. The study design makes it unlikely that more than a trend of increased family awareness and support related to disease progression can be determined. This report did not examine objective measure such as financial support, home or hospital visits, assistance in home care, or inclusion in family activities. It would be interesting to compare family support in HlV-serodiscordant couples with family support during the course of other chronic and lethal diseases. Further studies should also probe the impact of multiple losses to HIV in families, and effects on surviving children. These couples also completed psychosocial instruments including the Brief Symptom Inventory (Derogotis and Spencer, 1983). We are now investigating relationships between perceived support and psychological characteristics (for example, depression), and their association with measures of immune function.

REFERENCES Abrams, D., Dilley, J., Maxey, L. and Volberding, P. (1986) Routine care and psychosocial support of the patient with acquired immunodeficiency syndrome. Medical Clinics of North America, 70, pp. 707-720. Anderson, E. (1989) A Definition of Family, in: E. Macklin (ed.), AIDS and Families (New York, Harrington Park Press), pp. 129-194. Bor, R., Miller, R., Salt, H. and Scher, I. (1991) The relevance of a family counseling approach in HIV/AIDS. Patient Education and Counseling, 17, pp. 235-242. Boyd-Franklin, N. and Aleman, J. (1990) Black, inner-city families and multi-generational issues: the impact of AIDS. New Jersey Psychologist, 40, pp. 14-17.

148 M. FOLEYefo/.

Brandt, A. (1987) Plagues and Peoples: the AIDS epidemic, in: No Magic Bullet: A Social History of Venereal Disease in the United States since 1880 (Oxford, Oxford University Press), pp. 183-204. Brandt, A. (1988) AIDS: from social history to social policy, in: E. Fee and D. Fox (eds), AIDS: The Burdens of History (Berkeley, University of California Press), pp. 156-157. Brown, M. and Powell-Cope, G. (1991) AIDS family caregiving: transition through uncertainty. Nursing Research, 40, pp. 338-345. Centers for Disease Control and Prevention (1992) 1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. MMWR CDC Surveillance Summaries, 41, pp. RR1—19. Dailey, L. (1990) Therapy with inner city AIDS clients. New Directions for Mental Health Services, 46, pp. 65-74. Derogotis, L. R. and Spencer, P. M. (1983) The brief symptom inventory: an introductory report. Psychological Medicine, 13, pp. 595-605. Dowd, M. A. (1993) Coping with HIV over the course of disease, in: FOCUS: A Guide to AIDS Research and Counseling, vol. 8 (San Francisco, University of California), pp. 5—6. Eidson, T. (1988) The family's experience, in: AIDS Caregiver's Handbook (New York, St Martin's Press), pp. 90-98. Ekberg, J. Y. and Foxall, M. J. (1986) Spouse burnout syndrome. Journal of Advanced Nursing, 11, pp.161-165. Friedman, L. C., Baer, P. E., Nelson, D. V., Lane, M., Smith, F. E., Dworkin, R. J. (1988) Women with breast cancer: perception of family functioning and adjustment to illness. Psychosomatic Medicine, 50, pp. 529-540. Frierson, R., Lippman, S. and Johnson, J. (1987) AIDS: psychological stresses on the family. Psychosomatics, 28, pp. 65—68. Hepworth, J. and Shernoff, M. (1989) Families and partners of persons with HIV, in: E. Macklin (ed.), AIDS and Families (New York, Harrington Park Press), pp. 66-67. Holland, J. and Tross, S. (1985) The psychosocial and neuropsychiatric sequelae of the acquired immunodeficiency syndrome and related disorders. Annals of Internal Medicine, 103, pp. 760—764. Kubler-Ross, E. (1970) The patient's family, in: Death and Dying (New York, Macmillan), pp. 157-180. Levine, C. (1990) AIDS and changing concepts of family. Milbank Quarterly, 68 (Suppl. 1), pp. 33-58. Macklin, E. (ed.) (1989) Introduction, in: AIDS and Families (New York, Harrington Park Press), pp. 4-10. Marks, R. and Dilley, J. (1992) Language, conceptions of AIDS, and mental health, in: FOCUS: A Guide to AIDS Research and Counseling, vol. 7 (San Francisco, University of California), pp. 1—4. Mehta, C. and Patel, N. (1991) StatXact Statistical Software for Exact Nonparametric (Cambridge, CYTEL Software Corporation).

Inference

Nelkin D., Willis, D. and Parris, S. (1991) Introduction, in: A Disease of Society: Cultural and Institutional Responses to AIDS (Cambridge, Cambridge University Press), pp. 7-9. Nichols, S. (1985) Psychosocial reactions of persons with acquired immunodeficiency syndrome. Annals of Internal Medicine, 103, pp. 765-767. SAS Institute (1988) SAS/STAT User's Guide (Gary, SAS Institute Inc). Sherlock, R. and Dingus, C. (1988) Families and the Gravely III: Roles, Rules, and Rights (Westport, Greenwood Press), pp. 1-23, 24-45. Sussman, M. (1989) AIDS and its impact on families, in: E. Macklin (ed.), AIDS and Families (New York, Harrington Park Press), pp. 236-239.

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Tiblier, K., Walker, G. and Rolland, J. (1989) Therapeutic issues when working with families of persons with AIDS, in: E. Macklin (ed.), AIDS and Families (New York, Harrington Park Press), pp. 81-127. Wadland, W. and Gleeson, C. (1991) A model for psychosocial issues in HIV disease. Journal of Family Practice, 33, pp. 82-86. Walker, G. (1991a) Issues of Secrecy. Living with AIDS: the symptomatic phase, in: In the Midst of Winter. Systemic Therapy with Families, Couples and Individuals with AIDS Infection (New York, Norton), pp. 113-133, 153-177. Walker, G. (1991b) The Family and the Cultural Context of AIDS: family systems approach, in: In the Midst of Winter. Systemic Therapy with Families, Couples and Individuals with AIDS Infection (New York, Norton), pp. 3-27, 29-38. Walker, G. (1991c) In the Shadow of Death: Preparing for loss, in: In the Midst of Winter. Systemic Therapy with Families, Couples and Individuals with AIDS Infection (New York, Norton), pp. 203—237. Yarling, J. (1992) Financial loss and benefits, in: FOCUS: A Guide to AIDS Research and Counseling, vol. 7 (San Francisco, University of California), pp. 1-6.

ELEVEN The Social Dynamics of HIV Transmission as Reflected Through Discordant Couples in Rural Uganda David Serwadda, Ronald H. Gray, Maria J. Wawer, Rebecca Y. Stallings, Nelson K. Sewankambo, Joseph K. Konde-Lule, Bongs Lainjo and Robert Kelly

INTRODUCTION The HIV epidemic in Uganda and adjacent African countries has been extensively documented (Dolmans et al., 1989; Wawer et al., 1991; Serwadda et al., 1992; Serwadda et al., 1994; Wawer et al., 1994), and few studies have focused on discordant couples from East and Central Africa (Ryder et al., 1990; Mulkolenkole et al., 1991; Allen et al., 1992). These latter studies have mainly explored the effect of counseling on sex behavior and HIV seroconversion rates in discordant couples residing in large towns or cities. There is, however, little information on the dynamics of HIV infection in discordant couples from rural areas of Africa. Since 70% of the sub-Saharan population resides in rural areas and substantial levels of infection have been identified in these rural populations (Dolmans et al., 1989; Wawer et al., 1991; Serwadda et al., 1994), the spread of the epidemic outside the cities will largely determine the impact of HIV on mortality in subSaharan Africa. Since 1989 we have conducted a large cohort study of over 3,000 adults in Rakai, a high HIV-1 prevalence rural district of southwestern Uganda. This descriptive study has helped to define the epidemiology of HIV-1 transmission in this rural population (Wawer et al., 1991; Serwadda et al., 1992; Wawer et al., 1994). We previously demonstrated that the most important determinants of HIV prevalence are age, sex, place of residence and sexual behaviour, particularly the number of sexual partners. In brief, prevalence and incidence of HIV-1 were highest in the 20-29-year-old age group, and women were infected at younger ages than men; prevalence was highest in trading centers located on main roads, intermediate in trading villages on secondary roads and lowest in rural villages; and individuals reporting multiple sexual partners are at increased risk of HIV infection, particularly if they reside in the main-road trading-center communities.

THE SOCIAL DYNAMICS OF HIV TRANSMISSION

151

In this study we report on the characteristics and behaviors of discordant couples to further explore the social epidemiology of HIV transmission in a rural setting. An analysis of discordant couples is important because it can reveal the sex-specific factors affecting the introduction of HIV into a family, since the positive partner is likely to be the source of new infection into the relationship. The proportion of either male- or female-HIV-seropositive discordant couples and the covariates associated with sex-specific discordant infection can be of importance in developing preventive strategies for high-risk populations. METHODS The Rakai study is an open, population-based cohort investigation in 31 randomly selected community clusters in rural Rakai district. High prevalence trading centers and villages on main and secondary roads were oversampled (Wawer et al., 1991). In 1989, 21 community clusters were randomly selected within the district, and in 1990, the cohort was expanded with the enlargement of existing clusters and addition of 10 randomly selected new clusters. The study methodology has been described previously (Wawer et al., 1991; Wawer et al., 1994). Each household in the study clusters is visited annually to obtain information on sociodemographic characteristics and behaviors of all consenting adults aged ^13 years. All interviews are conducted in private by trained interviewers. A venous blood sample is also obtained from adults ^13 years. HIV infection is determined by double enzyme-linked immunosorbent assay (ELISA; Cambridge BioTech, Worcester, Massachusetts, USA) with Western blot confirmation (Cambridge BioTech). All individuals are offered counseling and HIV results are readily available on request. We previously established a geographic typology to characterize the communities in Rakai district. This typology was found to be strongly associated with the prevalence of HIV infection in the study populations (Wawer et al., 1991; Serwadda et al., 1992). Based on our data, communities were divided into trading centers located on main roads on trucking routes to Kampala, Rwanda or Tanzania, and which contain bars and hotels or lodges (1990 HIV prevalence for 15-59-year-olds, 37.9%); intermediate trading villages located on secondary roads and which have bars, but generally do not have hotels (1990 HIV prevalence for 15-59-year-olds, 25.8%); and rural villages located on minor roads or tracks with limited vehicular access. These latter communities do not contain bars or lodges (1990 HIV prevalence for 15-59-year-olds, 13.6%). In the 1990 survey, serum samples and interview information were obtained from both partners on 571 men and 622 women aged 15-59 years who identified themselves as living in the same household and married or in consensual union (51 men were in polygamous relationships with 102 women). There were 411 relationships (411 men, 451 women) in which both partners were HIV-seronegative (72%), 81 in which both partners (81 men, 88 women), were HIV-seropositive (14.2%), and 79 discordant relationships (79 men and 83 women, 13.8%) in which

152 D. SERWADDA et al.

Table 11.1 Sociodemographic characteristics of male and female partners in discordant couples. Discordant couples n (%} Female respondents

Male respondents

Age (years) <19 20-29 30-39 40-59 Education None Primary Secondary Place of residence Trading centers Intermediate villages Rural villages

P*

HIV(n = 48)

HIV+ (n=35)

P*

0.08

12(25.0) 22 (45.8) 1 1 (22.9) 3 (6.3)

8 (22.9) 20(57.1) 4(11.4) 3 (8.6)

0.5

2 (5.7) 19(54.3) 14(40.0)

0.7

13(27.7) 29(61.7) 5(10.6)

5(14.3) 24 (68.6) 6(17.1)

0.3

17(48.6) 12(34.3) 6(17.1)

0.03

13(27.1) 1 1 (22.9) 24 (50.0)

17(48.6) 12(34.3) 6(17.1)

0.008

HIV+ (n = 44)

HIV(n = 35)

22 (50.0) 14(31.8) 8(18.2)

17(48.6) 5(14.3) 13(37.1)

3(7.0) 27 (62.8) 13(30.2) 13(29.6) 1 1 (25.0) 20 (45.4)

* f test.

one partner was HIV-positive and the other HIV-negative at the 1990 survey. The characteristics and behaviors of these discordant relationships were used to examine the factors associated with either male or female infection. Since interviews were conducted in private with each individual, data are analyzed and presented separately by the sex of the respondent. In addition, we used information on the 411 concordant HIV-negative couples to estimate the prevalence of behaviors such as condom use or multiple sexual partners among couples in the general population. Tests of statistical significance were based on the %2 test, and Fisher's exact test was used when cell frequencies were less than five observations. Individuals in a discordant or concordant negative relationship were followed over an approximate 1-year period (mean, 0.98 person-years of observation (PYO); range, 0.4-1.9) to determine seroconversions among the initially seronegative partners. This follow-up information was used to estimate the incidence of seroconversion per 100 PYO and the standard errors (SE). Rate ratios and 95% confidence intervals (CI) were used to assess the differentials in incidence rates (Rothman, 1986).

RESULTS The discordant relationships, in which both members were aged 15-59 years, consisted of 79 men and, because of polygamy, 83 women on whom data were available. The four women married to polygamous men lived in rural villages. There were 44 relationships in which the man was HIV-positive and the woman HIV-negative (n = 48), and 35 in which the woman was the HIV-positive partner. Table 11.1 shows the sociodemographic characteristics of HIV-positive men and women in discordant partnerships, for information provided by male or

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Table 11.2 Sexual behavior and symptomatology of sexually transmitted diseases among male and female partners in discordant relationships. Discordant couples n (%) Female respondents

Male respondents

Number of sexual partners 0-1 >2 Use of condoms No Yes Genital ulcer disease No Yes Genital discharge No Yes

HIV+ (n = 44)

HIV(n = 35)

P

HIV(n = 48)

HIV+ (n = 35)

P

21 (51.2) 20 (48.8)

19(54.3) 16(45.7)

0.82

47(97.9) 1(2.1)

30 (85.7) 5(14.3)

0.08f

38 (90.5) 4(9.5)

29 (82.9) 6(17.1)

0.50

46 (97.9) 1(2.1)

31 (88.6) 4(11.4)

0.16

32 (72.7) 12(27.3)

28 (80.0) 7 (20.0)

0.60

46 (95.8) 2(4.2)

28 (80.0) 7 (20.0)

0.03

35 (79.6) 9 (20.4)

28 (80.0) 7 (20.0)

1 .00

47 (97.9) 1(2.1)

35(100) -

1.00

* Fisher's exact test, t One-tail test, P = 0.046.

female respondents. As expected in this society, husbands were older and better educated than their wives, and HIV-negative men were somewhat older than HIV-positive men (P = 0.08). Fifty-three out of the 79 discordant couples (67%) lived in trading centers or intermediate trading villages, which reflects the higher prevalence of HIV infection in these communities. There was, however, a marked disparity in the proportion of male and female HIV-positive discordant couples by place of residence. Approximately half the couples in male HIV-positive/ female HIV-negative relationships resided in rural villages. However, among the female HIV-positive/male HIV-negative couples, only 17% lived in rural villages. These differences were statistically significant, and suggest that in the trading or intermediate centers, women are as likely as men to be the source of new infection into the family, whereas in the rural villages, men are the predominant source of new HIV infection. Table 11.2 summarizes sexual behaviors and pertinent sexually transmitted disease (STD) symptomatology. There were substantial differentials in reported sexual behavior between male and female HIV-positive discordant couples, and between male and female respondents. Among 76 men who provided sexual partner information, 47.4% reported having two or more sexual partners within the year prior to interview, but there were no differences between the reported sexual activity of men in male or female HIV-positive discordant relationships. Only a small proportion of women respondents reported two or more sexual partners (7.1%), which is significantly less than for the men (P = 0.001). However, a higher proportion of women in female HIV-positive discordant relationships reported two or more sexual partners (14.3%) than women in the male HIV-positive discordant relationships (2.1%), and this difference was of borderline statistical significance (P = 0.08). The higher frequency of multiple

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Figure 11.1 Reported condom use by male and female partners in discordant (• = HIV-negative male, HIVpositive female; D = HIV-positive male, HIV-negative female) and concordant (0 = HIV-negative) relationships (P<0.05).

partners among HIV-positive women was observed both in the trading and intermediate centers (13.8%) and rural villages (16.7%). Among 450 women in concordant HIV-negative relationships, only 16 (3.6%) reported more than two sexual partners, and this is significantly less than the 14.3% reported by HIVpositive women in discordant relationships (P = 0.001). Reported preventive behaviors such as condom use varied by sex of respondent and by the sex of the seropositive partner in a discordant relationship. As shown in Figure 11.1, seronegative men with seropositive wives reported condom use more frequently (17.1%) than seropositive men with uninfected wives (9.5%), or concordant seronegative couples (5.8%). Condom use primarily occurred in trading and intermediate centers: among residents of these communities, HIVnegative men in discordant relationships with an HIV-infected female partner reported 20.7% condom use (six out of 29), compared with 9.4% in concordant HIV-negative couples (15 out of 160). This difference was of borderline statistical significance (P = 0.08). Women reported less condom use than men (Table 11.2 and Figure 11.1), but among discordant couples in which the man was HIVnegative, 11.4% of the female seropositive partners reported condom use, compared with 2.1% of women who were seronegative partners of infected men, and 1.6% of concordant seronegative couples. In the intermediate and trading centers, 10.3% of 29 HIV-seropositive women with seronegative partners reported condom use, compared with 2.8% of 177 women in concordant seronegative relationships (P = 0.09). These findings, although constrained by small numbers, suggest that condom use is higher when the woman is the infected partner, whereas if the man in a discordant relationship is HIV-positive, condom use is similar to that of the general population of concordant HIVnegative couples. We also examined symptoms of STD and other illnesses among men and women in discordant relationships. HIV-seropositive women more frequently

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Table 11.3 Seroconversion rate per 100 person-years of observation (PYO) among all couples.

Discordant couples HIV+ men and HIV- women HIV- men and HIV+ women Total Concordant HIV-negative couples Men Women Total

No. couples

No. seroconversion

PYO

Incidence per 100PYO±s.e.

44 22 66

4 2 6

43.4 23.0 66.4

9.2±4.6 8.7±6.1 9.0±3.7

323

3 3 6

318.9 363.8 682.7

375 698

0.94±0.5 0.82±0.5 0.87±0.4

reported genital ulcer disease (20.0%) than seronegative women (4.2%), and this difference was statistically significant (P = 0.03). No other significant differentials were observed in reported symptomatology among men or women. All individuals were offered free, readily accessible and confidential HIV serological counseling and their HIV results; participation in the counseling program was voluntary. Among the discordant couples, only 10 men (12.7%) and six women (7.2%) requested both counseling and their HIV test results during 1990-1991. The incidence rates of HIV among discordant and concordant HIV-negative couples are shown in Table 11.3. Follow-up information was available on 44 (91.7%) out of the 48 seronegative female partners of infected men. Follow-up was less satisfactory for the male partners of the 35 HIV-seropositive women; only 22 seronegative husbands (62.9%) provided a serological sample at the subsequent survey round. The rate of seroconversion was similar for men and women in discordant relationships (8.7 and 9.2 per 100 PYO, respectively), and the rate for both sexes combined was 9.0 per 100 PYO (s.e. ± 3.7). Among concordant HIV-negative couples, 1-year follow-up information was available on 375 (83%) out of 451 women and on 323 (79%) out of 411 men. HIV incidence was similar among men and women (0.94 and 0.82 per 100 PYO, respectively). HIV incidence rates among discordant couples were much higher than those for the general population of seronegative couples, and the rate ratio of seroconversion among discordant relative to concordant couples was 10.3 (95% CI, 3.3-31.9).

DISCUSSION HIV infection was found in 160 (28%) of the 571 couples in this study cohort. Extrapolated to the district as a whole, we estimate that 18.7% of couples have one or more HIV-infected partners. This is high compared with reported HIV prevalence rates in other parts of central Africa; Ryder et al. (1990) found HIV infection in 5.3% of married couples in Kinshasa, Zaire, and Allen et al. (1992) estimated a 14% prevalence among couples in Kigali, Rwanda. The high prevalence of HIV infection among couples in this rural community is of concern as it indicates the magnitude of the HIV epidemic and the potential future problems of orphanhood. This analysis of discordant relationships has revealed important information

156 D. SERWADDA et al.

on the social dynamics of the HIV epidemic in a rural Ugandan population. We have shown that for discordant couples residing in main-road trading centers or secondary-road trading villages, the woman is as likely as the man to be the index HIV-positive partner. However, in rural villages, the man is more likely to be the HIV-positive partner. This suggests that in trading centers or trading villages, women are at high risk of HIV infection possibly as a consequence of sexual contact (commercial or otherwise), with both local men and external truck drivers and traders. However, in more remote rural villages, the greater mobility of men, generally for purposes of work or trade, may be the main source of infection. It is of interest that women in female HIV-positive discordant relationships, who predominantly reside in trading centers or trading villages, had significantly more sexual partners in the past year than HIV-negative women in male HIV-positive discordant couples (Table 11.2). Overall, however, the difference in the number of sexual partners reported by sex was as expected; there is a tendency for men to report more sexual partners than female respondents in our cohort (Serwadda et al., 1993). The association between HIV seropositivity and symptoms of STD among women is consistent with data from our cohort and other studies in East Africa (Mulkolenkole et al., 1991; Serwadda et al., 1994). There are also important differences in preventive behavior between men and women among these discordant couples (Table 11.2). As expected, men reported more condom use than women, but most noteworthy was the finding that if the husband was HIV-negative and the wife HIV-seropositive, condom use was higher than if the man was HIV-positive and the woman HIV-negative, or if both partners were negative (Figure 11.1). The project made substantial efforts to promote serological testing and to provide test results and confidential counseling, but very few individuals requested their results in 1990—1991 (Lainjo et al., 1994). It is interesting to note that although a high proportion of individuals did not know their HIV serostatus, there is a tendency for men to protect themselves, particularly if a seronegative male was in union with a higher-risk woman. Presumably there is a process of self-identification whereby men can assess their own or their partner's risk status. The disparity in reported male and female condom use probably reflects the propensity of men to use condoms with extramarital partners as well as the inequality of decision-making power within the marital relationship. Men have greater control over condom use, so if they perceive themselves to be at risk of HIV transmission, they can choose to use condoms as HIV prophylaxis. However, women have less choice and given the premium placed upon childbearing in this culture, women may be under pressure to conceive, irrespective of their partner's HIV status. Similar cultural-social considerations were raised by Ulin (1992) in her review of behavioral factors affecting the risk of HIV transmission in African women. Overall condom use remained low in Rakai despite condom promotion and distribution by the project (Konde-Lule et al., 1994). Munkolenkole et al. (1991) have demonstrated the effectiveness of condom use in reducing HIV transmission in discordant couples in a large town in Zaire. Similar results have been reported from Kigali (Allen et

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al., 1992) and more recently from Europe (de Vincenzi et al., 1994). Our experience to date suggests that condoms are only accepted slowly in these rural communities despite their availability. The observed HIV incidence rate of 9.0 per 100 PYO among discordant couples in our cohort is high, but not dissimilar to the rates observed in Kigali (Allen et al., 1992) or from European data (de Vincenzi et al., 1994) despite significant use of condoms in the latter populations. The seroconversion rates among discordant couples in Rakai were 10 times higher than in concordant negative couples (Table 11.3), which is expected, since persons in a discordant relationship are at very high risk of HIV exposure from the infected partner. However, the incidence rates were similar among men and women, both in discordant couples and in concordant HIV-negative couples. Although men report more sexual partners than women, and this may put men at greater risk, our observation is consistent with reports of high transmission rates from women to men among prostitutes in Nairobi (Cameron et al., 1989), and equality of male and female incidence rates among rural and urban populations in Tanzania (Killewo et al., 1993). Also, de Vincenzi et al. (1992) observed comparable rates of seroconversion among male and female heterosexual partners in European populations. In contrast, earlier studies of discordant couples in Europe and the United States suggested more efficient transmission of HIV from men to women (Peterman et al., 1988; Padian et al., 1991). Ulcerative and non-ulcerative genital infections are strongly associated with seroconversion among discordant couples (de Vincenzi et al., 1994). Therefore, in Africa, where untreated STDs are common, these may contribute to the efficiency of HIV transmission from women to men (Wasserheit, 1992). Our results highlight the fact that both men and women are vulnerable to acquiring HIV infection from their spouses. Furthermore, these couples are reluctant to use counseling services or to use condoms. Women may be particularly vulnerable in this respect because they lack decision-making power and are under social pressure to bear children. There is, therefore, a need for health education, counseling programs and condom promotion targeted particularly to couples residing in high HIV seroprevalence areas to help reduce introduction of HIV infection into the marital relationship and to prevent subsequent high transmission rates within discordant couples. In rural villages where men are the predominant source of HIV introduction into the community, there is an urgent need to promote preventive measures such as monogamy or condom use, particularly among men who travel to high prevalence trading centers or trading villages.

REFERENCES Allen, S., Tice, J., Van de Perre, P. (1992) Effect of serotesting on condom use and seroconversion among HIV discordant couples in Africa. British Medical Journal, 394, pp. 1605-1609.

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Cameron, D. W., Simonsen, J. N., D'Costa, L. J. (1989) Female to male transmission of human immunodeficiency virus type 1; risk factors for seroconversion in men. Lancet, ii, pp. 403-407. de Vincenzi, I. and the European Study Group on Heterosexual Transmission of HIV (1994) A longitudinal study of human immunodeficiency virus transmission by heterosexual partners. New England Journal of Medicine, 331, pp. 341-346. Dolmans, W. M. V., van Loon, A. M., van den Akker, R. (1989) Prevalence of HIV-1 antibody among groups of patients and healthy subjects from a rural and urban population in the Mwanza region, Tanzania. AIDS, 3, pp. 297-299. Killewo, J. Z. J., Sandstrom, A., Raden, U. B., Mhalu, F. S., Biberfeld, G. and Wall, S. (1993) Incidence of HIV-1 infection among adults in the Kagera Region of Tanzania. International Journal of Epidemiology, 22, pp. 528-536. Konde-Lule, J. K., Wawer, M. J. and Lainjo, B. (1994) Condom use in young adults in rural Uganda (abstract PC0505), X International Conference on AIDS, Yokohama, August 1994. Lainjo, B., Wawer, M. J., Lutalo, T., Sewankambo, N. and Kelly, R. (1994) Use of HIV counselling in rural Uganda (abstract PD0734) X International Conference on AIDS, Yokohama, August 1994. Munkolenhole, K., Ryder, R. W., Jingu, M. (1991) Evidence of marked sexual behavior change associated with low HIV-1 seroconversion in 149 married couples with discordant HIV-1 serostatus: experience at an HIV counselling center in Zaire. AIDS, 5, pp. 61-67. Padian, N. S., Shiboski, S. C. and Jewell, N. P. (1991) Female to male transmission of human immunodeficiency virus. Journal of the American Medical Association, 266, pp. 1664—1667. Peterman, T. A., Stoneburner, R. L., Allen, J. R. (1988) Risk of human immunodeficiency virus transmission from heterosexual adults with transfusion associated infection. Journal of the American Medical Association, 259, pp. 55-58. Rothman, K. J. (1986) Modern Epidemiology (Boston, Little, Brown & Co.), pp. 170-236. Ryder, R. W., Ndulu, M., Hassig, S. (1990) Heterosexual transmission of HIV-1 among their employees and their spouses at two large businesses in Zaire. AIDS, 4, pp. 725-732. Serwadda, D., Wawer, M. J., Musgrave, S. D., Sewankambo, N. K., Kaplan, J. E. and Gray, R. H. (1992) HIV risk factors in three geographic strata of rural Rakai district, Uganda. AIDS, 6, pp. 983-989. Serwadda, D. S., Wawer, M. J., Musgrave, S. D., Stallings, R. and Sewankambo, N. K. (1993) Concurrent partners and the results of the Uganda Rakai project (letter). AIDS, 1, pp. 287-288. Serwadda, D., Mhalu, F., Karita, E. and Moses, S. (1994) HIV and AIDS in East Africa, in: M. Essex, S. M'boup, P. Kanki and R. Mbowa (eds), AIDS m Africa (New York, Raven Press), pp. 669-687. Ulin, P. R. (1992) African women and AIDS: negotiating behavioral change. Social Science and Medicine, 34, pp. 63-73. Wasserheit, J. N. (1992) Epidemiology synergy: interrelationships between human immunodeficiency virus infection and other sexually transmitted diseases. Sexually Transmitted Diseases, 19, pp. 61-77. Wawer, M., Serwadda, D., Musgrave, S., Konde-Lule, K., Musagara, M. and Sewankambo, N. (1991) Dynamics of spread of HIV-1 infection in a rural district of Uganda. British Medical Journal, 303, pp. 1303-1306. Wawer, M., Sewankambo, N., Berkley, S. (1994) HIV incidence in a rural district of Uganda. British Medical Journal, 308, pp. 171-173.

TWELVE

Prevention of Heterosexual Transmission of Human Immunodeficiency Virus Through Couple Counseling Nancy S. Radian, Thomas R. O'Brien, YoChi Chang, Sarah Glass and Donald P. Francis

Worldwide, sexual intercourse between men and women is the most common mode of transmission of HIV (WHO, 1990). In the absence of an effective vaccine, behavior change remains the most effective means to prevent the spread of HIV (Hinman, 1991). As the HIV epidemic expands, a growing population is at risk because of an ongoing sexual relationship with an HIV-infected person. Although in the United States there are programs to counsel and test HIV-infected or atrisk individuals (Cleary 1991; Higgins, 1991; Wenger, 1991), and some partner notification programs that locate, counsel, and test the partners of HIV-infected individuals (Giesecke et al., 1991), few, if any, programs provide couple counseling in which infected individuals and their sexual partners are counseled and educated at the same time about effective behavior change. The effectiveness of couple counseling has been suggested by Higgins et al. (1991), who reported that after counseling, reductions in unprotected sex were greater among discordant couples than among cohorts of high-risk individuals. However, in their review, little information was given about the composition of the samples, the nature of the counseling, or the length of the follow-up period. Here we report on behavior change over time and the rate of HIV seroconversion in a cohort of heterosexual couples who have been counseled about reducing HIV risk. METHODS Sample In 1985 we began a cross-sectional study in which we enrolled HIV-infected individuals (index cases) and their heterosexual partners to examine risk factors

160 N. S. RADIAN et al.

for heterosexual HIV transmission. From the beginning of the study, we maintained contact with many enrolled couples, and in 1988 we began a prospective phase of the study. Thus, couples were recruited on an ongoing basis since 1985, and recruitment of new couples continues today. The study protocol has been approved by the University of California-San Francisco Committee on Human Research. Approximately 32% of couples were recruited from local departments of public health, including alternative test sites and public clinics, 31% were recruited from their health care providers, 21% were recruited from friends or advertising including hotlines, 13% were recruited from other research studies, and 3% were recruited from blood banks. In order to be enrolled, the susceptible partner could have no reported source of HIV risk other than sexual relations with the index case. The source of transmission in the index case and lack of extraneous exposures in the partner were established through risk histories. If this could not be established with certainty, the couple was eliminated from the study. Partners with more than one partner could be enrolled only if the other partners were known to be low risk. Retrospective results about transmission rates and associated risk factors have been presented elsewhere (Padian et al., 1987; Padian et al., 1991). After enrolment, if the couple was discordant for HIV serostatus and was still having sexual relations, they were enrolled in a prospective study with biannual (on average) visits to examine HIV seroconversions and associated risk factors as well as behavior change over time. Couple Counseling and Social Support At each visit, each member of the couple was interviewed separately by a staff member to obtain epidemiologic information (including sexual practices), and the same staff member offered couple counseling about safer sex practices. Both partners were present together for one counseling session per visit, although counseling was reinforced after the interview during follow-up visits for each partner separately. Counseling focused on how to purchase, store, and use condoms, refraining from the practice of anal sex, choosing abstinence, and not entering into sexual relations with new partners. We also provided couples with condoms. Study staff used male and female genital models to educate couples about HIV transmission, contraception, and conception. The models provided a reference point for couples to talk about sex without referring to their own bodies. Sessions also included role-play to build self-esteem and confidence, and discussions of social, financial, and legal issues associated with infection with HIV (e.g., what the index case would do if the other partner or a child became infected; child-care if a parent becomes ill). Although practicing safe sex was the goal of the counseling, non-judgmental support rather than persuasion was offered so as not to interfere with truthful answers about behavior. On average, a counseling session lasted approximately one hour. Although many index cases had received HIV counseling before enrollment, >90% of the HIV-negative

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161

partners had not. Time between learning of infection in the index case and entry into the study ranged from a few weeks to 2 years. Counseling was conducted on average every 6 months at each follow-up visit (although not necessarily by the same staff member), and couples were encouraged to ask questions and describe any problems using safer sex. Follow-up visits were scheduled 1-2 months before the follow-up visit, and couples were reminded again 1 or 2 days before the visit. Study staff were also available to participants at other times by telephone. Other sources of social support included a 'buddy' system in which individual participants were matched with other participants and phone numbers and addresses were exchanged, quarterly social gatherings, and information nights. Because of issues of anonymity and confidentiality, about half of the couples participated in the buddy system and information nights, and approximately one-third came to the social gatherings. We also published a quarterly newsletter for participants that included scientific information and articles by participants. Statistical Analysis Here we report interview data on condom use, abstinence, the practice of unprotected anal intercourse, and the number of sexual partners during followup. For questions about monogamy, we considered responses from both members of the couple. For other sexual behaviors, we used the female partner as the informant for the couple's sexual behavior, although agreement about reported sexual behaviors between both partners in the couple was >90% (Padian, 1990). Besides number of sexual partners, sexual behaviors reported here refer only to behaviors between partners in the enrolled couple. Condom use was defined as consistent use at every sexual contact, whereas anal intercourse was defined as ever engaged in during the follow-up period. Monogamy was defined as no additional partners for either partner at intake and during the interval between interviews. We also examined whether behavior change was affected by various demographic variables. Race/ethnicity refers to the race of the female partner; 93% of the couples were concordant for race. Age also refers to the female partner. Index risk group refers to the reported source of infection in the index case: heterosexual partner includes individuals who were infected from previous heterosexual partners; several women in the study were infected from a man at entry into the study, but took on a new partner after they broke up with their infected partner or he died. In this report, we examined behavior with the current partner, so no one in this report was counted more than once. To evaluate the likelihood that practicing safer sex may be mediated by the degree of illness in the HIV-infected partner, diagnostic status based on medical history indicated disease stage of the index case was included as a co-factor. To control for secular trends that might influence behavior change, we looked at behavior change by year of entry into the study. To evaluate whether sex of the index partner affected behavior change, we

162 N. S. RADIAN et al.

also included gender as a predictor of behavior change. Finally, we examined the duration of the couples' relationship, because this too might influence the commitment to behavior change. Statistical comparisons were made using %2 trend tests comparing multiple points in time for categorical data in analysis of the whole sample. Data on condom use were also compared over time for each couple using McNemar's matched analysis test in which couples' behaviors at follow-up were 'matched' to behavior at intake.

RESULTS One hundred and seventy-five couples were eligible for follow-up (i.e., they were discordant, had a current partner, and had been in the study for at least an intake visit). Of these, 20 couples (11%) were lost to follow-up before their first followup visit due to poor locating information, seven couples (4%) moved away from the study area, and four couples (2%) did not wish to continue in the study. The rest of this paper will be limited to those 144 with at least one follow-up visit. No differences existed between couples lost to follow-up and couples who remained in the study according to sexual practices reported at intake, duration of the relationship, age of the female partner, risk group, gender of the index case, or year of entry into the study. However, a smaller proportion of Latino couples participated in follow-up than couples of other racial/ethnic backgrounds (P = 0.02). Table 12.1 presents the distribution of those demographic factors at study entry that we examined as co-variates of behavior change. Over two-thirds of the participants were white. The mean age of the women was 34 years, ranging from 19 to 61 years of age. No single risk group was predominant among the index cases. In 36% of the couples, the index cases had AIDS or another symptomatic manifestation of HIV infection at enrollment. Most of the couples were recruited during or after 1988. The mean duration of a relationship was 5.6 years, ranging from 1 month to almost 40 years. Among the 144 couples, follow-up ranged from 0.25 to 5.5 years per couple (mean = 1.34 years, median =1.5 years). The mean frequency of penile-vaginal intercourse among couples who were not abstinent at their most recent follow-up (n = 109) was two to three contacts per month. We observed no seroconversions during 193 couple-years of follow-up. Table 12.2 examines the number of couples reporting condom use or abstinence over time. Because study recruitment is ongoing, the numbers become smaller with each successive follow-up. In addition, over time, 71 additional couples became ineligible for further follow-up. Locating information became invalid (the couple moved or could not be located) for 28 (40%) of these couples, 20 (28%) of the couples broke up or were divorced, 20 (28%) of the index cases died, and three (4%) of the couples voluntarily dropped out of the study. Among the 28 couples with invalid locating data, at their last follow-up visit, 25% abstained

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Table 12.1 Demographic variables examined as co-variates at study entry

Race of female partner White Black Latino Other Age of female partner (years) 16-20 21-30 31-40 >41 Risk group of index case Bisexual Hemophiliac/transfusion IVDU Heterosexual partner* No identified risk Diagostic status of the index case* Al DS/sym ptomatic Asymptomatic Gender of index case Female Male Year of entry 1985-1987 1988-1989 At or after 1 990 Duration of relationship < 1 year 1 + year to 3 years 3 + years to 5 years 5 + years to 1 0 years > 1 0 years

n

%

100

17 20 7

69 12 14 5

4 47 61 32

3 33 42 22

40 24 43 12 25

28 17 30 8 17

52 92

36 64

32 112

22 78

32 74 38

22 51 26

25 31 21 46 21

17 21 15 32 15

* comprised women who were infected from a previous partner in the study; at entry into the study.

f

from sex, 50% always used condoms, and 25% used condoms about half of the time. Of the three couples who did not wish to continue in the study, one abstained and the other two used condoms every time at their last follow-up visit. Table 12.2 Behavior change over time Intake Abstinence Condom usef No longer eligible*

0/144 70/144 (49%)

Istf.u. 24/144 (17%) 105/120 (88%)

2nd f.u. 3rd f.u. 4th f.u. 5th f.u. 6th f.u. 7th f.u.

19/81 (23%) 56/62 (90%) 41 2

8/45 (18%) 37/37 (100%) 22

4/21 (19%) 14/17 (82%) 6

1/13 (8%) 11/12 (92%) 1

Fvalue*

0/7

0/3

< 0.001

6/7 (86%) 1

3/3 (100%) 0

< 0.001 0

* P value is the same for a trend test and a x comparing intake to first follow-up, where most behavior change occurs; f n for condom use is the number of sexually active couples only; * broke up, moved, or partner died - also includes three couples who voluntarily dropped out after one follow-up visit; f. u., follow-up.

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Table 12.3 Condom use at intake compared to most recent follow-up (n = 109*) Condom use at follow-up (row percentages)

Condom use at intake

Yes No

Yes

No

54 (87%) 40 (85%)

8(13%) 7(15%)

P< 0.001 f * Not including the 35 couples who abstained from sex at their most recent followup; * derived from McNemar's test.

Couples who abstained from sex (first row in Table 12.2) were deleted from consideration of condom use. Most behavior change occurred between intake and the first follow-up. Forty-nine per cent of all couples reported they consistently used condoms at intake, whereas 88% reported they consistently used condoms by their first follow-up with no other significant changes in use over time noted throughout the remainder of follow-up (P < 0.001 for overall trend test). Most couples who reduced their risk did so by consistent condom use, but 17% were abstinent by their first follow-up visit (P < 0.001); 24% were abstinent at their most recent follow-up visit. These reported behavior changes were not associated with any demographic characteristics of either the partner or the index case. However, couples were more likely to be abstinent at their last follow-up visit if the infected partner was symptomatic at that time (P = 0.02). Of the 81 couples who had at least two follow-up visits, 4 (5%) said they were abstinent at each follow-up visit. Of these, one was abstinent because the partner feared infection, one was abstinent because the infected partner was too sick to have sexual intercourse, and 2 couples were having difficulties with their relationship. In order to examine changes by couple rather than the whole sample, we also conducted a matched analysis comparing condom use at intake to condom use reported at the most recent follow-up visit for each couple (Table 12.3). Again, couples who abstained at their most recent follow-up (n = 35) were excluded. Eighty-five per cent of the couples who did not use condoms at intake did so by their most recent follow-up, whereas 13% of couples who used condoms at entry were not using them at follow-up (P < 0.001). Couples who used condoms at follow-up did not differ from couples who did not use condoms according to race/ethnicity, age, risk group, gender or diagnostic status of the index case at entry into the study, year at entry into the study, or duration of the relationship. Seventy-eight per cent of the 144 couples were monogamous at intake and at each follow-up visit; 86% of all couples were monogamous at entry into the study (4 partners and 16 index cases had other partners), and 92% of all couples were monogamous at their last follow-up visit (P = 0.46). Overall, 13 couples who were not monogamous at entry became so during the follow-up period, and 11 couples who were initially monogamous did not remain so during follow-up. In 9 of the 11 couples, only the women had other partners (one of these women was

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abstinent with her HIV-infected partner in the study); in one of these 11 couples, both partners had multiple partners, and in another couple only the man had multiple partners. Four of the 12 participants who had sex with additional partners during follow-up were HIV-positive (3% of all HIV-infected individuals in the study). The visit(s) in which multiple partners were reported were not associated with disease status of the index case, or whether the couple had abstained from sexual relations with each other during the time covered by that visit. Similarly, these 11 couples did not differ from couples remaining monogamous according to any of the co-variates we examined. Twenty-six per cent of all couples had engaged in anal sex at least once before enrollment. During the follow-up period, two of these couples (5%) reported practicing anal intercourse; no couples initiated this practice at follow-up. We also compared couples who consistently engaged in safer sex practices with couples who engaged in more risky practices. There were 105 couples (73%) who said they always practiced safer sex (consistent condom use, no anal intercourse, no new partners) at each follow-up visit, and 39 couples who either did not consistently use condoms, practiced anal intercourse, or had multiple partners for at least one follow-up visit. The couples who engaged in risky practices did not differ from couples practicing safer sex with respect to any of the independent variables we considered with the exception of year of entry into the study. Forty-three per cent of couples who entered the study during its first 3 years practiced risky behavior during follow-up compared to 22% for the later 3 years (P = 0.01). Fifteen of these 39 couples who practiced risky sex had only one follow-up visit. Twenty-four had multiple follow-up visits (median = three visits). Five of these 24 couples never practiced safer sex - reported engaging in at least one of the following during every follow-up visit: practiced anal intercourse, did not use condoms, or had multiple partners (for the infected index case only) — during the follow-up period. As part of the follow-up interview, couples were asked why they did not practice safe sex (if applicable). Reasons the five couples gave for engaging in risky behavior included a sense of shared fate (one couple), feelings of invulnerability (i.e., if they were not yet infected, they were probably not susceptible; two couples), and the fear that safer sex interferes with intimacy (two couples).

DISCUSSION We recorded significant sexual behavior change and no HIV seroconversion in our study sample over the follow-up period. Behavioral changes occurred mainly between intake and the first follow-up visit. Behavior change for specific practices did not vary by any demographic characteristics, but couples who were enrolled in the first few years of the study were less likely to report practicing safer sex consistently at each follow-up visit. This may represent a change in social norms over time, or it may represent relapse on the part of couples enrolled earlier in

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our study. These couples also have the longest follow-up period, and it is uncertain whether these results will be duplicated among other couples as their follow-up time increases. We have not observed any differences in the rate of such change according to race/ethnicity, age, risk group, gender, or diagnostic status of the index case, or duration of relationship - although our sample was fairly homogeneous with respect to several of these factors, thus reducing the power to detect an effect for any of these variables. Because the vast majority of participating couples continued or began safer sex practices after enrollment, it is difficult to characterize the small number of couples that persisted in high-risk behavior, and we are unable to predict reasons for relapse from safer sex practices for those couples reporting this. Nevertheless, only four of 144 HIV-infected individuals in the study acquired new sexual partners during the course of follow-up, and only five discordant couples who had more than one follow-up visit consistently reported behaviors that put them at continued risk of HIV seroconversion. There are several limitations to this study. Obviously, an experimental design with a control group that received no counseling would be a more powerful test of an intervention than this paired comparison. However, the primary goals of this study were to measure HIV transmission rates, and not to evaluate counseling and education. The study subjects do not constitute a random sample of discordant heterosexual couples; our participants might be more willing to change their behaviors than couples who were not recruited or who were lost to follow-up. Eighteen percent (13 of 175) of all eligible couples did not participate in follow-up mainly due to insufficient locating information, although 4 couples chose not to participate in follow-up. An additional 3 couples voluntarily dropped out of the study after their second follow-up, but these couples were practicing safe sex when they dropped out. Nevertheless, it is possible that these couples reverted to high-risk activities after they left the study. In addition, although there is no reason to invoke selection bias among couples lost due to poor locating information, we cannot rule out this possibility in the 28 couples for whom this was the case. Seven of these couples did not use condoms consistently at their last follow-up and they may have remained at risk, whereas the remaining couples may have relapsed to high-risk activity once they left the study. We also tended to enroll monogamous couples in long-term relationships who may have been more committed to behavioral change than couples with relationships of shorter duration. Likewise, some behavior change may not be due to the study intervention; it may simply result among couples who are adjusting to HIV infection or AIDS in one partner. Moreover, our behavioral data are based on self-report, and the same staff member often served as both interviewer and counselor. Thus, after enrollment, couples may have reported behavior change because they believed that this is what we wanted to hear. Furthermore, HIV seroconversion may be of limited value as a biological marker to corroborate behavior change because transmission may never occur in many

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couples. Finally, although we observed 193 couple-years of follow-up, the average couple was followed for only 1.5 years. It remains to be determined whether behavior change can be sustained over longer periods of time and whether such changes can be sustained in the absence of continued counseling should funding constraints result in termination of the study. Nonetheless, to our knowledge, the lack of seroconversion in our study has not been demonstrated in similar studies that do not include couple counseling. Although duration of follow-up and analytic methods of other studies of HIVdiscordant couples vary (most of which are not based in the United States), on average other investigators report a seroconversion rate of 7% (mode = 5%) with a range of 5-17%, after almost 2 years of follow-up (Marinacci et al., 1991; Papetti et al., 1991; Rehmet et al., 1991). Therefore, we suggest that intensive couple counseling and social support offered through our study may represent an effective way to promote and maintain safer sex practices among individuals who are at risk of HIV transmission from an infected partner. If these findings are confirmed in additional studies, couple counseling should be considered for incorporation into HIV prevention programs.

REFERENCES Castilho, E. A., Gguimaraes, M. D., Sereno, A. et al. (1991) Condom use among female partners of HIV infected men, Rio de Janeiro, Brazil. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 17. Cleary, P., Van Devanter, N., Rogers, T. et al (1991) Behavior changes after notification of HIV infection. American Journal of Public Health, 81, pp. 1586-1591. Deschamps, M.-M., Pape, J. and Haffner, A. (1991) Heterosexual activity in at risk couples for HIV infection. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 19. De Vincenzi, I. and Ancelle-Park, R., for the European Community Study Group on Heterosexual Transmission of HIV (1991) Heterosexual transmission of HIV: follow-up of a European cohort of couples. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 17. Falciano, M., Ferri, F., Macedonio, A. et al. (1991) Heterosexual transmission of HIV: a 4-year followup. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 17. Giesecke, J., Ramstedt, K., Granath, F. et al. (1991) Efficacy of partner notification for HIV infection. Lancet, 338, pp. 1096-1100. Higgins, D., Galavotti C., O'Reilly, K. et al. (1991) Evidence for the effects of HIV counseling and testing on risk behaviors. Journal of the American Medical Association, 266, pp. 2419-2429. Hinman, A. (1991) Strategies to prevent HIV infection in the United States. American Journal of Public Health, 81, p. 1557. Jordi, T., Casabona, M., Condor, K. et al. (1991) HIV transmission in heterosexual partners of intravenous drug users. A follow-up study. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 17. Kamenga, M., Ryder, R., Jingu, M. et al. (1900) Evidence of marked sexual behavior change associated with low HIV-1 seroconversion in 149 married couples with discordant HIV-1 serostatus: experience at an HIV counseling center in Zaire. AIDS, 5, pp. 61-67.

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Marinacci, G., Costigliola, P. and Chiodo, F. (1991) Risk factors in heterosexual transmission of HIV. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 19. Massimo, M. (1991) Incidence and risk factors of man to woman sexual HIV transmission: longitudinal study on 171 women steady sexual partners of infected men. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 17. Moss, G., Clemetson, D., D'Costa L. J. et al. (1991) Despite safer sex practices after counselling, seroconversion is high among HIV serodiscordant couples in Nairobi, Kenya. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 19. Padian, N. (1990) Sexual histories of heterosexual couples with one HIV-infected partner. American Journal of Public Health, 80, pp. 990-991. Padian, N., Marquis, L., Francis, D. et al. (1987) Male-to-female transmission of human immunodeficiency virus. Journal of the American Medical Association, 258, pp. 788-790. Padian N., Shiboski, S. and Jewell, N. (1991) Female-to-male transmission of human immunodeficiency virus. Journal of the American Medical Association, 266, pp. 1664-1668. Papetti, C., Mezzaroma, L, D'Offizii, G. P. et al. (1991) Risk factors for heterosexual transmission of HIV-1 in stable couples. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 19. Rehmet, S., Staszewski, S., Heim, E. B. et al. (1991) Cofactors of HIV transmission in heterosexual couples. Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 19. Skurnik, J., Bromberg, J., Grijalva, K. et al. (1991) Behavior changes in heterosexual couples discordant for HIV: a report from the Heterosexual Transmission Study (HATS). Paper presented at the Seventh International Conference on AIDS, Florence, Italy, June 19. Wenger, N., Linn, L., Epstein, M. et al. (1991) Reduction of high-risk sexual behavior among heterosexuals undergoing HIV antibody testing: a randomized clinical trial. American Journal of Public Health, 81, pp. 1580-1586. WHO (1990) Current and Future Dimensions of the HIV/AIDS Pandemic: A Capsule Summary, September 1990 (Geneva, World Health Organization), WHO/GPA/SFI/90.2.

THIRTEEN Gender Differences in HIV-Related Psychological Distress in Heterosexual Couples Cheryl A. Kennedy, Joan H. Skurnick, Marianne Foley and Donald B. Louria

INTRODUCTION The psychosocial impact of HIV and AIDS on individuals has long been the subject of studies and the focus of many community agencies. Less work has been done on the effect on families and significant others and whether the support of families has a role in the psychological well-being of those directly affected by HIV. Worldwide, heterosexuals comprise the overwhelming majority of HIV-infected persons (WHO, 1994) and millions more are the seronegative sexual partners of persons with HIV, yet surprisingly few studies have examined the mental-health status and needs of these heterosexual HIVpositive persons and their partners, particularly women. An earlier literature review by Nakajima and Rubin (1991) showed 31 studies examining the psychosocial aspects of HIV infection in 2,438 patients, only 13 of whom were women. In 1993 du Guerny and Sjoberg discussed a strategy for using gender analysis to examine the spread of HIV/AIDS. This report, which is a subset of a large epidemiologic HIV-transmission study of heterosexual couples, set out to determine if lack of family support was correlated with psychological distress as measured by the Brief Symptom Inventory (Derogatis and Melisaratos, 1983). The results were presented in part at AIDS' IMPACT: Biopsychosocial Aspects of HIV Infection, held in Brighton, England, July 1994 (Kennedy et al., 1994). It is commonly perceived that persons coping with the extreme stressors of chronic and life-threatening illnesses can benefit from emotional support and counseling (Lazarus, 1974; Holland, 1977; Weisman, 1989; Spiegel, 1990). Normal bereavement reactions in response to loss or potential loss have been well described since Freud's Mourning and Melancholia (1917). Parkes (1974) specifically described spousal bereavement and the stages of grief. Kiibler-Ross (1993)

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Table 13.1 Subjects & Selected Characteristics

HIV+ HIVTotal n = 2001 Race Black White Hispanic Other Graduated 1 2th grade (US High School) Mean Age in years Mean CD4 count (HIV+)2 Mean length of knowledge of HIV status (own or partner's) in years2

Males

Females

76 21 97

30 73 103

17 45 34 1

14 58 30 1

43 (45%)

37 422/^1

2.3

32(31%) 34 456/nl 2.2

1 18 individuals (8 males, 10 females) are part of HIV seroconcordant couples; remainder (89 males, 93 females) part of HIV serodiscordant couples. Some data missing on 4 males. 2 Difference not statistically significant.

has written extensively about the psychiatrist's role in consulting with dying patients and their families. SUBJECTS AND METHODS As part of the Heterosexual HIV Transmission Study (HATS) of the National Institute of Health/National Institute of Allergy and Infectious Diseases (NIH/ NIAID; Bethesda, Maryland, USA ), we examined the existence and relationship of family support to psychological distress as measured by the BSI (Derogatis and Melisaratos, 1983) in 200 heterosexuals (see Table 13.1). Couples were recruited from HIV Counseling and Testing Sites in New Jersey, as well as from drug treatment centres, private physicians, community agencies and hospital clinics for infectious diseases. Serodiscordant couples were recruited to monitor for HIV transmission and concordant seropositive couples were recruited as a comparison group. For discordant couple eligibility, the seronegative partner could not have been an injecting drug user (IDU) or a man who had sex with other men. Written informed consent was obtained and structured interviews were conducted by trained staff. Information on demographics, including age, gender, ethnicity, education and income, medical, drug, alcohol histories and sexual practices, were collected. The BSI, a point-in-time measure of psychological distress administered at baseline interview, was used as the outcome measure here. The BSI is a 53-item self-report inventory designed to reveal psychological symptom patterns of individuals. Nine primary symptom dimensions are identified: somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility,

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phobic anxiety, paranoid ideation and psychoticism. Symptoms are rated on a five-point scale of distress ranging from 'not at all' to 'extremely'. Four additional items covering sleep, appetite disturbance, guilt feelings and thoughts of death and dying are part of the General Severity Index (GSI) (Derogatis and Spencer, 1982). Participants, interviewed between August 1990 and June 1992, were asked if they had family members who were aware of the presence of HIV within the couple. If there were aware family members, the extent of support was characterized from 'not supportive', 'not very' (no support), to 'moderately', 'very' (supportive). Mean scores of subgroups defined by presence of family awareness, family support and demographic factors were compared by two-way analysis of variance, with gender as a second factor. Gender comparisons of mean CD4 counts were conducted by Student's ?-tests. Analyses were stratified by HIV serostatus. Comparisons of length of knowledge of HIV status were performed using nonparametric rank tests. Two-tailed P-values are presented throughout. The criterion for statistical significance was P < 0.05.

RESULTS Eighty-nine males and 93 females from HIV-serodiscordant couples and 8 males and 10 females from seroconcordant couples were interviewed for a total n of 200. Selected cohort characteristics and serostatus breakdown are presented in Table 13.1. The average span of time of HIV status knowledge reported by HIVpositive males (n = 66) was 2.8 years; for HIV positive females (n = 20) it was 2 years; for HIV negative males who reported knowing of their sexual partner's seropositivity (n = 21) it was 1.8 years, and for HIV negative females who reported knowing of their sexual partner's seropositivity (n = 70) it was 2.4 years. The average CD4 lymphocyte count of seropositive males was 422/pl; for seropositive females the average was 4567|il. Seropositive subjects were conventionally categorized based on CD4 counts: below 200/^1, n = 27; between 200-500/^1, n = 29; greater than 500/^1, n = 39. Values for CD4 counts were not obtained for 11 seropositive individuals. There was no significant difference by serostatus or gender in reported length of knowledge of HIV status or CD4 counts. Sixty-five per cent of study participants reported that at least one family member was aware of HIV within the couple, but only 50% of those with aware family members reported them as supportive. Drinking and drug-use problems were not associated with lack of family support. Family support was not a significant predictor of psychological distress. Only gender was significantly correlated with psychological distress. On every BSI dimension females had higher scores (more distress) than males (see Table 13.2). Analysis of potential confounders (race, age, education) did not yield any significant associations.

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Table 13.2 Gender differences HIV positives Females = 29 Males = 76

HIV negatives Females = 71 Males = 21 BSI dimensions

p value

BSI dimensions

p value

Somatization Obsessive compulsive Interpersonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoia Psychoticism General Severity Index

0.009* 0.04* 0.08 0.04* 0.008* 0.09 0.09 0.5 0.1 0.01*

Somatization Obsessive compulsive Interpersonal sensitivity Depression Anxiety Hostility Phobic anxiety Paranoia Psychoticism General Severity Index

0.05* 0.06 0.0004* 0.1 0.04* 0.0007* 0.002* 0.01* 0.09 0.003*

*Gender was the significant predictor for distress on these subscales. Note: Females (HIV + and HIV -) had higher scores than males on all subscales.

DISCUSSION It is interesting that lack of family support is not associated with psychological distress in this cohort and that being female was the most significant predictor of more psychological distress. This was found for both HIV-positive and HIVnegative women who confront HIV in their domestic partnerships, i.e. with their primary sexual partners, whether or not they themselves are infected. Other gender differences were noted in prior analyses conducted on family support in this cohort: within the same family, mothers were more frequently aware and supportive than fathers, and sisters were more often aware and supportive than brothers (Foley et al., 1994). Our instrument did not characterize or qualify 'support' nor did we analyze the presence or effectiveness of other social supports that may have influenced the outcome. Length of knowledge of HIV status was not significantly different between men and women, positives and negatives; thus both groups had similar amounts of time to begin to establish coping mechanisms and formulation of management strategies. Both HIV-positive women and HIV-positive men had average CD4lymphocyte counts between 400-500/[il, generally not considered dangerously low in most clinical situations. At another point in disease progression, emergence of multi-system symptoms, for example, may prompt more disclosure to families or more distress related to lack of support (Foley et al., 1994). Those needing or seeking support may require different types and quality of support at different times during the course of infection. In the Epidemiologic Catchment Area (EGA) study of psychiatric disorders in the general population of the United States, women were nearly twice as likely as men to have a primary psychiatric disorder (Regier et al., 1988), so finding evidence of more psychological distress in a population experiencing chronic, progressive disease that is generally fatal should be expected. In the Brown and

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Rundell (1993) prospective study of psychiatric aspects of HIV in 29 women, hypoactive sexual desire and a trend toward an increase in marital problems were reported. The incidence of mood and anxiety disorders was higher than it was for the men that were concurrently studied. What are the implications of this psychological distress? The BSI is not a diagnostic tool, but as a valid and reliable screening instrument, it serves to alert clinicians to individuals who have subjective distress in particular domains, which upon further evaluation by a qualified mental-health professional may yield more substantial pathology. The relationship between health and stress is complex and gender differences relative to health and stress have been reviewed elsewhere (Baum and Grunberg, 1991). Pertinent policy recommendations and a re-thinking of our approach to HIV/AIDS regarding women have been made by other authors (du Guerny and Sjoberg, 1993). In the face of an illness that commands stigma and shunning from society and healthcare workers alike, having excessive psychiatric symptoms may impair a woman's ability to cope and manage her own disease or cope with and help care for the illness in a partner. Women as the traditional family caregivers may feel overwhelmed by the enormity of the tasks they face and, if they have children, the inherent uncertainties in disease course may undermine their capability to adjust and adapt. Women with psychological distress may be less able to practice riskreduction techniques to prevent acquisition or transmission, especially if they have drug- or alcohol-use problems (Kennedy et al., 1993). Optimal mental health can facilitate an individual's ability to participate in timely evaluations of medical complications and treatment options. The central nervous system and psychological complications of HIV/AIDS demand a genuine biopsychosocial approach for care and treatment. Regardless of severity, symptom reports and subjective distress may respond to established intervention methods designed to assist HIV-affected individuals actively to participate in their medical care and to cope with the psychological impact of disease. The potential benefits of providing psychological (and psychopharmacological care when indicated) are great and should be routine in the comprehensive medical care of the HIV-infected.

REFERENCES Baum, A. and Grunberg, N. E. (1991) Gender, stress and health. Health Psychology, 10, pp. 80-85. Brown, G. R. and Rundell, J. R. (1993) A prospective study of psychiatric aspects of early HIV disease in women. General Hospital Psychiatry, 15, pp. 139-147. Derogatis, L. and Melisaratos, N. (1983) The Brief Symptom Inventory: an introductory report. Psychological Medicine, 13, pp. 595-605. Derogatis, L. and Spencer, P. (1982) The Brief Symptom Inventory (BSI): Administration and Scoring Procedural Manual-1 (Baltimore, Maryland, Clinical Psychometric Research). Du Guerny, J. and Sjoberg, E. (1993) Inter-relationship between gender relations and HIV/AIDS epidemic: some possible considerations for policies and programmes. AIDS, 1, pp. 1027-1034.

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Foley, M., Skurnick, J. H. and Kennedy, C. A. (1994) Family support for heterosexual partners in HIV serodiscordant couples. AIDS 8, pp. 1483-1487. Freud, S. (1917) Mourning and Melancholia, in: Complete Works, vol. XIV (translated 1957) (London, Hogarth Press). Holland, J. (1977) Psychological aspects of oncology. Medical Clinics of North America, 61, pp. 737-748. Kennedy, C. A., Skurnick, J. H., Wan, J. Y., Quattrone, G., Sheffet, A., Quinones, M., Wang, W. and Louria, D. B. (1993) Psychological distress, drug and alcohol use as correlates of condom use in HIVserodiscordant heterosexuals. AIDS, 7, pp. 1493-1499. Kennedy, C. A., Skurnick, J. H., Jaffee, M., Foley, M. and Louria, D. B. (1994) Psychological distress is associated with lack of family support in female HIV+ heterosexual couples: a report from the HATS study (abstract Wl 1.1). AIDS' IMPACT: Biopsychosocial Aspects of HIV Infection, Brighton, England. Kiibler-Ross, E. (1993) On Death and Dying (New York, Macmillan Publishing Company). Lazarus, R. S. (1974) Psychological stress and coping adaptation and illness. International Journal of Psychiatry in Medicine, 5, pp. 321-333. Nakajima, G. and Rubin, H. (1991) Lack of racial, gender, and behavior-risk diversity in psychiatric research on HIV/AIDS in the United States. Florence, Italy, Proceedings of the 7th International Conference on AIDS, 1:193 [MB 2044]. Parkes, C. M. (1974) Bereavement (New York, International Universities Press). Regier, D. A., Boyd, J. H., Burke, J. D., Rab, D. S., Myers, J. K., Kramer, M., Robins, L. N., George, L. K., Karno, M. and Locke, B. Z. (1988) One-month prevalence of mental disorders in the United States. Archives of General Psychiatry, 45, pp. 977-986. Spiegel, D. (1990) Can psychotherapy prolong cancer survival? Psychosomatics, 31, pp. 361-366. Weisman, A. D. (1989) Vulnerability and the psychological disturbances of cancer patients. Psychosomatics, 30, pp. 80-85. WHO (World Health Organization) (1994) Global Programme on AIDS, The Current Situation of the HIV/AIDS Pandemic (Geneva, WHO).

FOURTEEN Intimacy and Sexual Risk Behaviour in Serodiscordant Male Couples Robert H. Remien, Alex Carballo-Dieguez and Glenn Wagner

INTRODUCTION Many research efforts have identified individual-level determinants of high risk sex behaviour, such as youth (Kelly et al., 1991; Valleroy et al., 1993), poor education (Dublin et al., 1992), minority ethnic status (DiClemente, 1991; Hadden et al., 1992; Collinset al.,1993) alcohol and drug use in the context of sex (Kelly et al., 1991; Collins et al., 1993; McKirnan et al., 1993; Valleroy et al., 1993), depression (Hadden et al., 1992; Beltan et al., 1993), low self-efficacy (Aspinwall et al., 1991; Basen, 1992), negative attitudes towards condom use (Kelly et al., 1991), and preference for anal intercourse (Ekstrand and Coates, 1990). Little research has been conducted to specifically identify couple-level factors leading to unsafe sexual behaviour. In as much as sexual risk behaviour occurs in a dyad this constitutes an especially important gap in the literature. The current study is designed to begin to fill this gap. HIV serodiscordant male couples (where one partner is HIV-seropositive and the other is HIV-seronegative) are not uncommon, and sexual risk behaviour does occur in these relationships. Doll et al. (1991) studied 601 homosexual men who engaged in unprotected oral and anal sex and found that 50% of the men were in primary relationships, of which only 10% were in relationships known to be concordant for HIV status. Several studies (Berger, 1990; Stall et al., 1990; Doll et al., 1991; Valleroy et al., 1993) have shown that risky sex is more prevalent in sex with primary partners than in sex with casual partners among gay men. Doll et al. (1991) report that steady partnership (versus occasional partnership) was one of the most consistent predictors of risk behaviour across the three sites of their study. While some may argue that unprotected sex in relationships where both members have the same HIV serostatus (either both positive or both negative) is

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an acceptable choice for that couple, most would agree that this is not the case for couples of serodiscordant-HIV status where there is a known risk for HIV transmission. Little is known about the context and reasons for sexual risk behaviour in these couples. Clinically, one of the authors has reported that men in HIV serodiscordant relationships face several emotional and behavioural challenges to the development and maintenance of satisfying relationships (Remien, 1994). The need always to maintain safe sex behaviours was reported as a barrier to ongoing intimacy. These couples also experience a lack of support from their peers for participating in relationships with obvious uncertainty regarding future longevity. Concerns about HIV transmission, health status of the HIV-positive partner, and future planning are examples of the sources of conflict and anxiety faced by these couples and seem to play a role in their ability to maintain safer sex behaviour, as well as satisfying relationships. It is important to identify ways that mental health-care providers can intervene with couples facing these circumstances to facilitate maintenance of safer sex behaviour as well as the development of satisfying and emotionally intimate relationships. This preliminary report documents the initial step of a three-year project designed to assess couple-level determinants of sexual-risk behaviour and to describe the context and challenges to sexual and emotional intimacy in male couples of known HIV-serodiscordant status. Increased understanding of the determinants of risky sex behaviour, barriers to intimacy, and related contextual concerns in couples known to be serodiscordant can have important public health implications for other couples as well. We used qualitative data collection and analytic techniques to ask the following questions: (1) Which sexual risk behaviours occur in known HIV-serodiscordant male couples? (2) What are the barriers to and facilitators of consistent safer sex? (3) What are the barriers to emotional intimacy and sexual satisfaction? (4) What interventions are helpful to reduce sexual risk behaviour and improve couple satisfaction for male couples in HIV serodiscordant relationships?

METHOD Recruitment and Eligibility Criteria Male couples were recruited via advertisements in AIDS newsletters, flyer postings at community AIDS organizations and other organizations within the gay community, and through word of mouth and referrals from local healthcare providers. Given the consistent documentation of a higher risk for HIV transmission among Latinos (Selik et al., 1988; Kellogg et al., 1990; Doll et al.,

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1991), we decided actively to recruit Latino couples. So that we could focus on a single ethnic group, we targeted Puerto-Ricans, since Puerto-Ricans represent the largest of New York City's Latin American ethnic groups. After expressing interest in study participation, a telephone screening instrument was administered to all couples that included inquiries relevant to the following eligibility criteria; minimum age for participation was 18 and minimum length of relationship was 4 months; one member had to be HIVpositive and the other HIV-negative, with each member knowing their own and the other's serostatus; having sex with each other at least once a month was required. Focus Groups In order to understand the complex nature of sexual risk behaviour, the context of its occurrence, and the emotional needs and challenges to intimacy for these couples, we chose focus groups as our method of qualitative data collection. Focus groups involve bringing together people of similar background and experiences to discuss issues that affect them. Participants are asked to reflect on focused questions posed by the interviewer. The object of focus groups is to get valid data in a social context where people are allowed to consider their own views in the context of the views of others. They are seen as a highly efficient qualitative data-collection technique (Patton, 1990). We conducted five focus groups. They consisted of five couples each and were conducted by two of the authors who are licensed clinical psychologists (Drs Remien and Carballo-Dieguez). One of these groups was conducted in Spanish, this being the dominant language of the participants. At the request of the participants in one of the focus groups, two more groups were held with that same group of participants, one with the HIV-negative partners and the other with the HIV-positive men. All groups lasted from 90 to 120 minutes. Participants were encouraged to discuss their views on risky and non-risky sex behaviour, barriers to and facilitators for maintaining safer sex, challenges to and promoters of emotional intimacy, ways in which their HIV status differences had an impact on their sex life and their relationship in general, and what they found helpful confronting these issues. All focus groups were audiotaped and transcribed. Telephone Follow-up Survey To acquire additional qualitative data we conducted a telephone survey with participants of two of the focus groups (10 couples), between 3 and 7 weeks after the meetings. The phone survey utilized a semi-structured interview that assessed their reactions to the group experience and the impact of the group on the couples' functioning and sexual behaviour. This interview was conducted by two trained interviewers (members of the research team) who were instrumental in participant recruitment.

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Qualitative Data Analyses We followed Patton's (1990) guidelines for qualitative data analysis. All focus group interviews were transcribed and carefully reviewed by eight raters, four members of the research team and four independent raters with expertise in qualitative research methods. Each rater independently identified all references to the couples' sexual behaviour, with special attention to HIV-risk behaviour, as well as all contextual and psychological (affective, cognitive and behavioural) determinants of such behaviour. Each rater independently identified and indexed the main themes. Themes were then compared, and the discrepancies between investigators were discussed to reach consensus. Common themes were pooled and analysed for the purpose of identifying recurrent patterns. The goal of these analyses was to identify themes and form hypotheses regarding sexual risk behaviour and couple functioning that will be tested on a sample of 90 couples currently being assessed. In this report we are unable systematically to quantify the number of couples that agreed with each thought or feeling expressed, since couples who did not spontaneously endorse a rinding cannot be assumed to have agreed or disagreed. Thus we report here the themes that were elicited in this qualitative phase of investigation which is the preliminary stage of a three-year project. When possible (i.e., when every couple commented on a particular issue) we provide quantifiable results.

RESULTS Demographics A total of 15 couples (30 participants) took part in the focus groups. There were eight Caucasian couples, four Puerto-Rican couples, and three couples of mixed ethnicity (one Caucasian and one Puerto-Rican). Among the total sample, 19 (63%) men were Caucasian and 11 (37%) were Puerto-Rican. The mean age of the sample was 37. Seventy per cent had attended college; 60% were employed. Relationship Variables and Health Status The mean length of relationship was 50 months (range, 4 months to 12 years). Mean length of time since serodiscordant status had been known was 30 months. Nearly half (47%) of the couples had known each other's HIV status prior to their first sexual encounter. Most couples (73%) were living together. Of the 15 HIV-positive partners, 8 (53%) had been diagnosed with AIDS. Which Sexual Risk Behaviours Occur? Only one couple said they did not engage in any behaviour that carried the risk of bodily fluid transmission, which for them included oral sex, anal sex, and open-mouth kissing. Fourteen of the 15 couples engaged in oral sex on a regular

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basis and approximately two-thirds of them did not use condoms. All of them said they avoided ejaculation and some couples reported that the HIV-positive partner always assumed the receptive role. Seven of the 15 couples reported engaging in anal intercourse. Five of these couples reported using condoms either most of the time or always for anal sex, while two couples said they did not use condoms for this behaviour. One of the latter two couples said that the seronegative partner was always the inserter for unprotected anal sex, which they did not think carried significant risk for HIV transmission. The second couple decided not to use condoms so as to maintain pleasure and intimacy in the relationship (see below). What are the Barriers to Maintenance of Safer Sex? LACK OF PERCEPTION OF RISK FROM ORAL SEX

Most couples perceived unprotected oral sex, without ejaculation, as carrying minimal to no risk for HIV transmission. As one couple said, 'It never comes up as far as oral sex is concerned. We have never considered using condoms for oral sex.' At the same time a certain level of anxiety and concern was expressed, by many, about the possibility of transmission via this behaviour, and there was a range of methods for coping with this uncertainty. In some couples the seronegative partner did not perform oral sex on his partner while the converse behaviour did occur. Others rationalized the safety of the behaviour, at times after the fact. For example, 'It's easier to give up fucking without a condom than it is to give up oral sex without a condom, so we've decided it's [unprotected oral sex] safe.' Similarly, repeated seronegative test results were often considered a justification for not using condoms (and as a guideline for future behaviour). One man said, 'It's what's happening in my own personal experience, remaining negative, that's going to tell me more about what I can do and what I can't do with my lover.' It seems that remaining seronegative after engaging in potentially unsafe behaviour justifies the continuation of that behaviour, and continues to reassure over time. One seronegative man said, 'I'm looking forward to being tested in another nine months, so that I can feel more mentally at ease with how I'm behaving.' Others simply decided that while unprotected oral sex carried some risk for HIV transmission, it was 'safe enough'. PERCEIVED INTERFERENCE WITH PLEASURE AND INTIMACY There is a lack of pleasure associated with the use of condoms and couples spoke of how condoms interfere with the development of sexual intimacy. On this issue, one man said, 'They [condoms] just got in the way.' Another one said, 'We use them and it [the intimacy and passion] dies. So we don't use them.' Quality of life and sexual relations may take precedence over sexual precautions for some couples. One man said, 'I set my limits and if I am doing something that's risky, that's the risk I'm taking. Because I want to live, I want to be happy.' Another couple had

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decided never to use condoms for oral or anal sex (regardless of which partner was receptive) 'for the sake of satisfaction and quality of our sexual relationship'. AVOIDANCE OF THE TOPIC

Avoidance of the topic is often discussed in the context of protecting the partner. Participants voiced their reluctance to discuss with their partner their fears and concerns about HIV, illness progression, and the impact that the infection had on their sexual lives: 'We have some problems talking about the illness itself, the future, and death. I haven't known how to talk about these things.' Condom use is perceived as a constant reminder to the couple of the positive serostatus of one of the members. The desire to suppress awareness of serodiscordant status results in a cycle of unsafe sex, remorse, wish to change, denial of risk, and recurrence of the cycle. LENGTH OF RELATIONSHIP

Familiarity or length of time in the relationship can lead to a sense of invincibility. Over time, as emotional intimacy grows, the perception of the possibility of being harmed by one's partner decreases and, consequently, unsafe sex increases. This feeling is reinforced by repeated seronegative testing on one partner. One couple described the following: When we first met we practised safe sex. We were using condoms . . . but once the relationship became solidified . . . we fell in love . . . We became more familiar with each other sexually and aware of each other and we started to drop those things [safer sex precautions]. Cause there's a certain amount of invincibility . . . there's just sort of a security you feel when there's just the two of you.

CULTURAL PREFERENCES

Emphasis on anal penetration seemed to characterize the Puerto-Rican participants when compared to Caucasian participants. In serodiscordant couples this becomes a barrier for engaging in behaviours that are less risky than anal penetration. The Puerto-Rican participants viewed anal penetration as a basic, indispensable component of sexual behaviour, as exemplified in the following quotes: Para mi es bien importante la penetracion. Tener una relacion sin penetracion es bien dificil . . . [For me, penetration is very important. To have sex without penetration is very hard . . .] I see that Americans can have sex without penetration, and for me that's really hard to visualize. Una vez tuve un amante [estadounidense] por tres meses y nunca tuvimos penetracion . . . A los americanos como que eso no les importa tanto.

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[Once, I had a [US] lover for three months and we never had penetration. Americans don't care about it that much.]

Those Puerto-Ricans who abstained from penetration regarded it as a loss and a diminishment in sexual pleasure, as described in the following quote: Han habido varios accidentes y eso me ha hecho cambiar un poco el acto sexual en cuanto a penetracion. Ya no tenemos tanta penetracion como antes y eso trae un poco de dificultad en la relacion porque al principio habia mas penetracion y se disfrutaba el sexo mejor. [There have been several accidents and that made me change sexually concerning penetration. We do not penetrate as much as before and that brings difficulties to the relationship because before, with more penetration, there was more sexual enjoyment.] ADDITIONAL BARRIERS

Other barriers to maintaining safer sex practices that have been found in studies of gay men at the individual level (see Introduction) also existed as barriers for couples. These included accidents of passion, emotional distress (depression, hopelessness), and alcohol or drug use during sex. What are facilitators of maintenance of safer sex? SAFER SEX ROUTINE AND TIMING OF COUPLE FORMATION RELEVANT TO ONSET OF HIV EPIDEMIC

Many spoke of safer sex precautions as a way of life: 'We're so aware of each other's status, safe sex is just the natural thing to do. It's like putting cream in the coffee. You just put the condom on.' This seems to be easiest for couples who entered the relationship already knowing about their serodiscordant status and for individuals who first became sexually active well after the onset of the AIDS epidemic. One man said, 'Part of the reason it's easier for me than some of you is that I came out just seven years ago. So I never knew gay sex that wasn't safe sex.' BEING CREATIVE

Some of the couples spoke of a process in which they had redefined their sexual relationship with a comfortable mix of safety and sexual intimacy: 'I think that there are ways to have wonderful sex without it being dangerous, such as having showers together and using oils and whatever. We put an extraordinary amount of time into celebrating just being with each other and touching each other and creating evenings for each other instead of fucking.' Another couple said, 'The last time we were in the shower together, we just didn't do certain things. Even in the heat of the moment there are other activities that we can do that do not necessarily require penetration. Mutual masturbation is a great thing. It's an art. It's re-making love-making into an art.'

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OVERCOMING FEAR OF TRANSMISSION

Couples talked about their fears of HIV transmission within the relationship and how it's helpful to get past that fear and become comfortable with the sex that they are having. This process includes talking to each other about these fears and agreeing on behaviours that both partners view as safe. One man said, 'Once you get over your fear that whatever you are doing sexually you're not going to give it to him - once you get past that stage, you begin to have some pleasant sex together, safe as it may be.' SEX OUTSIDE THE RELATIONSHIP Other couples have turned to sex outside the relationship to complement it. One couple explained, 'Sometimes we go out together. We go our separate ways, and then we come back together again. And we sort of talk like girlfriends. And it's the only time that we are able to communicate like that. So in a way, it brings us closer together because we're able to talk about our mutual experiences.' For others, sex outside the relationship is a substitute for an unsatisfied relationship at home. One man explained, 'I have to relieve my tension somehow. And I know it's not going to come from my lover. So I will go to a bookstore or something, and I'll relive sort of the old days, but in a safe way, of course.' What are the Barriers to Emotional Intimacy and Sexual Satisfaction? SAFER SEX As stated earlier, the need for safer sex created an obstacle, for some couples, in maintaining or achieving a healthy sexual relationship that was satisfying to both partners. One participant said: It [deciding whether to use condoms for oral sex] has been the worst thing for our sexual relationship. I'd say it's affected our sexual relationship the most. We ask, 'how long has it been hard?' If it's not hard, is it okay? How about 30 seconds before there's even a chance for any pre-cum? It affects the pleasure of our sexual relationship a lot.

STIGMA, EMOTIONAL RESPONSE TO SEROPOSITIVITY, AND PHYSICAL ILLNESS Obstacles to achieving a healthy sexual relationship included the stigma of HIV: 'When you first hear that you are HIV-positive you don't feel like doing anything sexually. You tighten up, you blame yourself, you blame it all on this wonderful thing that nature has for us.' Another man said, 'The first two or three weeks [after HIV-seropositive notification] I was totally revolted by sex.' The HIV-seropositive partner often feels unattractive because of illness and signs of illness. Some men spoke of their feelings on this issue: 'Oh, that scar, it's so ugly. I ask him, "do you think I have a cute body?" I'll run around nude in the apartment. He'll say "Yes, very cute", but, of course, I don't feel like I do.' Another said, 'I have scars from shingles and also I have scabs. And I'm really

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self-conscious. I have them all over my body. I don't know how he ever gets aroused.' Also, sexual dysfunction and a loss of interest in sexual activity were noted by a few physically symptomatic men. FEAR OF HIV TRANSMISSION The infected partner carries the fear of infecting his lover: 'It's been hard because there's a lot of guilt on my part. I'd never be able to forgive myself if he became positive.' The HIV-seronegative partner is also fearful of being infected. Many couples said that they do not typically express these fears to each other, although they readily discussed it in the group. One man said, 'I wish I could feel comfortable - safe - to be able to have decent sex. I wish I could be more calm with him. I am so afraid of getting infected. He has fear about it too. He's terrified about infecting me.' PROTECTING EACH OTHER Earlier, we discussed how avoidance of the topic of HIV can be a barrier to maintaining safer sex. This avoidance can also serve as a barrier to emotional intimacy for both the seropositive and seronegative partners. The HIV-seronegative participants said that they often feel that their emotional needs are less valid. They discussed how they did not want to express their sadness and fears, so as not to 'burden him with something else to worry about since after all, he's infected and I'm not.' Similarly the HIV-seropositive men expressed their need to protect their partners: 'I try to protect him a lot from what happens to me physically. I worry about him worrying about me. So sometimes I fudge a little bit. I'll say, oh, I had a really good day when I had just a good day, because I don't want to have him worry. I don't want to see that in his eyes.' The consequence of this mutual protection is emotional withdrawal within the relationship. When this was discussed, the men began to question who or what was really being protected. In the words of one participant, 'Earlier, somebody mentioned that the HIV-positive person tends to push the negative person away, or keep him at a distance. I find myself doing that. And I think this is one of the important issues. I tend to keep him at a distance to protect him, in every way, sexually, emotionally, physically to protect him, or to protect me? I don't know.' FUTURE UNCERTAINTY Couples reported that issues related to future outlook and a foreshortened life were very difficult to discuss in the relationship. HIV-positive and HIV-negative men had different perceptions about the future and had difficulties expressing their own thoughts and understanding the perspective of their partners. For the HIV-positive men there was often a sense of urgency which impacted future planning: 'Since I've learned that I'm HIV-positive, I feel time is more precious. I want to do this, and I want to do it now, because there is no tomorrow.' The unpredictable nature of the course of HIV-illness was reported by several

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couples to be troubling. One man said, 'There is no time frame. Which makes it real, real difficult. It could be six months, it could be a year, it could be ten years, nobody knows, which is the real hard thing.' When discussing their attempt to try to live for today, one man said, 'But I have trouble not worrying about the future, and being able to live for today.' Another said, 'I found it very difficult. We tried to do everything normally, but it's always in the back of your mind.' What Interventions Are Helpful? Although the focus groups were not intended to be clinical interventions, participants derived positive results from them. They valued greatly the opportunity to come together with other couples who shared their circumstances. We learned from our telephone survey that nearly all appreciated the group experience. They reported that it helped reduce their feeling of isolation, it validated their existence as a mixed serostatus couple, and it made them wish for more interactions of this nature. The couples who participated in the split groups felt that meeting both with and without their partners in group settings was useful for them. Several participants said that the group helped them gain insight into how their partner was coping with their situation. For many, the group provoked discussions about their sexual behaviour that had not taken place before in their relationship. Those couples who were extremely conservative (and anxious) about their sexual behaviour expressed an increased desire for more intimacy and comfort with safer sexual behaviour, while those who found their behaviour to be riskier than most of the other couples subsequently discussed the need to reevaluate their behaviour and to consider safer practices. In other words, peer norms influenced their thoughts about their own behaviour, and there seemed to be a tendency for movement towards the mean in terms of considering safer sex practices. DISCUSSION Behaviour that carries risk for HIV transmission occurs in commited relationships where both partners are fully aware of their serodiscordant HIV status. We have identified several factors which directly or indirectly contribute to high-risk sex behaviour in these male couples. Sexual risk behaviour within an established relationship has many interrelated determinants. Some factors have to do with individuals' background variables such as age and ethnicity. Other factors have to do with couple-level variables, such as length of relationship, already-established behaviour patterns, level of emotional and sexual intimacy, satisfaction with the relationship, and communication patterns. Other determinants of sexual risk behaviour are situational, such as use of alcohol and drugs with sex, and the passion of the moment. Finally, some determinants are more intrapsychic which include feelings of depression and hopelessness, personal preferences in sexual

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behaviour (e.g., a preference for anal sex), lack of feeling susceptible and lack of motivation for change. It is clear that these factors interact in numerous ways to determine sexual risk behaviour in a couple. For example, a couple that has a history of engaging in unsafe sex in the past (perhaps before they were even aware of their status) is vulnerable to resuming that behaviour. This risk will be heightened if one or both of them have a high preference for anal sex, they are feeling hopeless about their future, they find it difficult to talk to each other about intimate things, and they are using recreational drugs while engaging in sexual activities. Couples, just like individuals, have a strong resistance to change familiar behaviour patterns. They find ways to rationalize behaviours that go against their beliefs about safe and unsafe sex behaviour. Therefore conflicts between beliefs, normative behaviour, and the couple's risk behaviour need to be addressed. Couples demonstrate a range of strategies to cope with the stress and distress of HIV infection in their relationship, some positive and some negative. Sex is an intimate behaviour that can influence and be influenced by other modes of emotional intimacy within a relationship. When communication is impaired due to unexpressed fears about HIV transmission, potential illness and loss, future uncertainty and a desire to protect each other from these fears, many aspects of the relationship can be negatively affected. Confronting these issues and legitimizing the emotional needs of both members of a serodiscordant relationship is a challenge for couples and for mental health clinicians developing intervention strategies for these couples. Couples can have a powerful influence on each other. Exposure to other couples with which they can identify and share coping strategies as well as model safe and intimate behaviours should be the core ingredient of an intervention for male couples confronted with HIV or the threat of HIV in their relationship. Providing an environment for serodiscordant couples to meet with other serodiscordant couples can be a powerful mode of intervention. It's an important first step in helping to reduce the often profound isolation experienced by these men. Meeting both separately and jointly allows for the emergence and further discussion of emotionally intimate issues that are difficult for these couples to confront. Providing couples with the opportunity to discuss these issues can lead to improved satisfaction with their sexual and emotional relationship, a feeling of validation as a couple, and a reduction in sexual risk behaviour without a reduction in feelings of intimacy.

REFERENCES Aspinwall, L. G., Kemeny, M. E., Taylor, S. E., Schneider, S. G. and Dudley, J. P. (1991) Psychosocial predictors of gay men's AIDS risk reduction behavior. Health Psychology, 10, pp. 432-444. Adie, S. M., Joseph, J. G., Ostrow, D. G. and James, S. A. (1991) Predictors of relapse in sexual practices among homosexual men. AIDS Education and Prevention, 3, pp. 293-304.

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Basen, E. K. (1992) Psychosocial predictors of'safe sex' behaviors in young adults. AIDS Education and Prevention, 4, pp. 120-134. Beltan, E. D., Ostrow, D. G. and Joseph, J. G. (1993) Predictors of sexual behavior change among men requesting their HIV-1 antibody status: the Chicago MACS/CCS cohort of homosexual/bisexual men, 1985-1986. AIDS Education and Prevention, 5, pp. 185-195. Berger, R. M. (1990) Men together: understanding the gay couple. Journal of Homosexuality, 19(3), pp. 31-49. Collins, J., Holtzman, D., Kann, L. and Kolbe, L. (1993) Predictors of condom use among US high school students, 1991. International Conference on AIDS, 9, p. 94. Doll, L. S., Byers, R. H., Bolan G., Douglas, J. M., Moss, P. M., Weller, P. D., Joy, D., Bartholow, B. N. and Harrison, J. S. (1991) Homosexual men who engage in high-risk sexual behavior. A multicenter comparison. Sexually Transmitted Diseases, 18, pp. 170-175. DiClemente, R. J. (1991) Predictors of HIV-preventive sexual behavior in a high-risk adolescent population: the influence of perceived peer norms and sexual communication on incarcerated adolescents' consistent use of condoms. Journal of Adolescent Health, 12, pp. 385-390. Dublin, S., Rosenberg, P. S. and Goedert, J. J. (1992) Patterns and predictors of high-risk sexual behavior in female partners of HIV-infected men with hemophilia. AIDS, 6, pp. 475-482. Ekstrand, M. L. and Coates, T. J. (1990) Maintenance of safer sexual behaviors and predictors of risky sex: the San Francisco Men's Health Study. American Journal of Public Health, 80, pp. 973-977. Hadden, B., Gilbert, L., el Bassel, N., Schilling, R., Gray, O. and Glassman, M. (1992) Predictors of sexual behavior change in women on methadone: demographic, psychosocial and communication variables. International Conference on AIDS, 8, p. D473. Kellogg, T. A., Marelich, W. D., Wilson, M. J., Lemp, G. F., Bolen, G. and Rutherford, G. W. (1990) HIV prevalance among homosexual and bisexual men in the San Francisco Bay area: evidence of infection among young gay men. International Conference on AIDS, 6, pp. 218. Kelly, J. A., St Lawrence, J. S. and Brasfield, T. L. (1991) Predictors of vulnerability to AIDS risk behavior relapse. Journal of Consulting and Clinical Psychology, 59, pp. 163-166. McKirnan, D., Stokes, J., Vanable, P., Burzette, R. & Doll, L. (1993) Predictors of unsafe sex among bisexual men: the role of gay identification. International Conference on AIDS, 9, p. 819. Patton, M. Q. (1990) Qualitative Evaluation and Research Methods, 2nd edn (Newbury Park, Sage). Perkins, D. O., Leserman, J., Murphy, C. and Evans, D. L. (1993) Psychosocial predictors of high-risk sexual behavior among HIV-negative homosexual men. AIDS Education and Prevention, 5, pp. 141-152. Remien, R. H. (1994) Couples therapy with HIV serodiscordant gay men. Annual meeting of the American Psychiatric Association. Syllabus and Proceedings Summary, No. ID, 46. Selik, R., Castro, K. and Pappaioanou, M. (1988) Distribution of AIDS cases, by racial/ethnic group and exposure category, United States, June 1, 1981-July 4, 1988. Morbidity and Mortality Weekly Report, 37 (55-3), pp. 1-3. Stall, R., Ekstrand, M., Pollack, L., McKusick, L. and Coates, T. J. (1990) Relapse from safer sex: the next challenge for AIDS prevention efforts. Journal of Acquired Immune Deficiency Syndromes, 3, pp. 1181-1187. Valleroy, L., O'Reilly, K. and Rolfs, R. (1993) Predictors of lapse to unprotected anal intercourse in a cohort of homosexual and bisexual men in the USA. International Conference on AIDS, 9, p. 745.

FIFTEEN

Factors Associated with Hispanic Women's HIV-Related Communication and Condom Use with Male Partners Jan Moore, Janet S. Harrison, Kelly L. Kay, Sherry Deren and Lynda S. Doll

INTRODUCTION Data on rates of HIV infection and AIDS in the United States suggest an alarming increase in the number of women who have been affected (CDC, 1994). Demographically, women with HIV disease tend to be young women of colour living in large metropolitan areas (CDC, 1994). Although the highest percentage of women infected with HIV have a history of injection drug use (48%), heterosexual contact has accounted for an increasing percentage (36%) of HIV infection among women (CDC, 1994). Hispanic women have been particularly affected by heterosexual transmission of HIV. Whereas 36% of the AIDS cases among non-Hispanic white women and 33% among black women have been attributed to heterosexual transmission, 43% of the cases among Hispanic women are accounted for by heterosexual contact with an infected partner (CDC, 1994). The majority of Hispanic women who have acquired HIV heterosexually have had a partner who is an injecting drug user: however, over one-quarter have had an HIV-infected partner whose risk was unknown to the woman (CDC, 1994). Hispanic women may be at particular risk for heterosexually acquired HIV, not because of their own sexual behaviour, but because their male partners have multiple partners (Marin et al., 1993a, 1993b; Sabogal et al, 1993). For example, a recent survey reported that Hispanic men are more likely than Hispanic women and than both non-Hispanic white men and women to report having had multiple partners in the previous 12 months. Hispanic women, on the other hand, are less likely to report having had multiple partners than are non-Hispanic white women (Marin et al, 1993a). To reduce the rate of HIV infection among Hispanic women, more information is needed about their understanding of their HIV risk vis-a-vis male partners,

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their communication with male partners about HIV risk, and the extent to which this communication results in safer sex activities in the relationship. Several researchers have suggested that women of colour, particularly Hispanic women, may be at a distinct disadvantage in protecting themselves from heterosexually acquired HIV because they are unable or find it unacceptable to confront male partners about HIV-related concerns and to initiate safer sex practices (Mays and Cochran, 1988; Fullilove el al., 1990; Ickovics and Rodin, 1992). For women in stable relationships with a male partner at risk for HIV, these topics may be even more difficult to approach because they raise issues of trust and intimacy in the relationship (Mays and Cochran, 1988; Worth, 1989). Additionally, confronting HIV risk and initiating behaviour change may require that the couple establish new patterns of communication and decision-making. Few studies have examined women's communication about HIV and safer sex in stable, primary heterosexual relationships. Data on the factors that influence women's ability to communicate and initiate safer sex practices in these relationships are also limited. Some researchers have suggested that many women do not broach these issues with partners because the women do not acknowledge, or they deny, their risk for HIV despite the presence of objective risk factors such as the high-risk sexual practices of their primary partner (Mays and Cochran, 1988; Worth, 1989; Hobfoll et al, 1993). For these women, confronting the risk of acquiring HIV and the actions required to reduce risk (e.g., confronting their partner or leaving the relationship) can be overwhelming. To avoid this stressful situation, women may overlook or deny the relevance of information (e.g., the HIV risk resulting from a partner's infidelity) to maintain equilibrium in their lives and relationships. In those cases in which women perceive themselves to be at risk for HIV, they may fail to bring up HIV-related concerns and issues related to sexual risk behaviours because of cultural mores dictating that, in matters of sex, women should play a submissive, non-initiating role, with men making sexual decisions (Mays and Cochran, 1988; Worth, 1989, 1990). The available data present inconsistent findings: some researchers report that women take a more active role in sexual decision-making (Amaro, 1988; Fullilove et al., 1990; Kline et al., 1992) than that reported by earlier researchers (Madsen, 1961; Heller, 1966). Among Hispanic women, level of acculturation may influence adherence to cultural imperatives, with less acculturated women following more traditional roles in sexual decision-making (Marin et al., 1993b; Sabogal et al., 1993). Women also may be reluctant to initiate communication about HIV and behaviour change because they anticipate negative reactions from their male partner (Mays and Cochran, 1988; Wingood and DiClemente, 1992). A number of theories of health behaviour change propose that costs and benefits of performing a particular behaviour are weighed before one adopts new patterns of behaviour change (Becker et al., 1977; Carovano and Middlestadt, 1993). For women, anticipated partner reaction may be a cost that deters initiation of sexual risk reduction. Data are not available, however, on male partners' reactions to

HISPANIC WOMEN'S HIV-RELATED COMMUNICATION AND CONDOM USE 189

women's initiation of discussions about HIV and safer sex, nor on the effects of anticipated negative consequences on women's willingness to raise these issues. The present study examines the extent to which women in stable relationships communicate with primary male partners about HIV-related topics and requests that partners change their sexual behaviour. Potential influences on level of communication examined include perception of HIV risk, level of acculturation, relationship factors (i.e., openness of communication, openness of sexual communication, and relationship conflict), and expectations surrounding partner's reactions to requests. Finally, we examine the relationship between women's HIV and safer sex communications with primary male partners and condom use in the relationship. Because condom use is the most effective HIV prevention method other than sexual abstinence, women have been encouraged to initiate condom use with male partners at risk for HIV. Discussion of HIV and safer sex issues between women and their male partners has been portrayed as an important precursor to condom use in the relationship. Women, however, may initiate conversation about HIV and even request that a partner change his behaviour, but these communications may not be translated into condom use for a number of reasons. First, the woman may feel that she has found a way to protect herself through means other than condom use in the primary relationship (e.g., the man's condom use with his other partners). Expectations that the partner may react negatively to requests for condom use in the relationship may prompt the woman to attempt other protective measures (e.g., persuade partner to reduce or eliminate sex with other partners) so as to avoid the issue of condom use in the primary relationship. Second, a woman may communicate about HIV/AIDS and condom use, but her partner may refuse to co-operate or the couple may not carry through on the decision to use condoms. Condom use may occur in the absence of discussions about HIV or the need for safer sex practices; condom use may be a routine practice that requires little discussion for the couple. We explored issues related to HIV communication and condom use with three groups of Hispanic women: Dominican, Puerto Rican, and Mexican American. Researches have stressed behavioural and attitudinal differences among subgroups of Hispanic persons and the importance of examining subgroup differences (Amaro, 1988; Marin and Marin, 1991). For example, rates of multiple partners (Marin et al, 1993a; Sabogal et al, 1993) and HIV/AIDS-related knowledge and beliefs have been shown to vary across Hispanic subgroups (Dawson and Hardy, 1989; Biddlecom and Hardy, 1991). Also, dramatic differences in rates of HIV infection among the three Hispanic subgroups have been reported (Diaz et al., 1993), with the highest rates of HIV infection found among Puerto Ricans living in the northeastern United States. Differences in HIV rates among these groups could lead to differences in perceived risk for HIV, comfort in discussing HIV, social norms surrounding condom use, and rates of condom use. Finally, the extent to which Hispanic groups have been influenced by the dominant culture of the United States may also influence behaviours and attitudes, especially those

190 J. MOORE etai

related to sexuality (Marin and Marin, 1991). For example, data suggest that number of sex partners, condom use, and acceptance of traditional sex roles vary with level of acculturation (Marin et al., 1993b; Sabogal et al., 1993). This study explores the influence of Hispanic group differences and level of acculturation on communication and condom use. METHOD Formative Research Focus groups were conducted with Dominican, Puerto Rican and Mexican women to determine the appropriateness of research questions. Survey items were finalized with assistance from study interviewers, who were part of the Hispanic community. The final survey instrument was translated into Spanish and then back-translated into English. Different versions of the Spanish instrument were constructed to be responsive to the variants of Spanish spoken by Dominican, Puerto Rican and Mexican women. Procedure Study participants were recruited from the waiting rooms of primary health care clinics and social service agencies in the Washington Heights (Dominican) and East Harlem (Puerto Rican) sections of New York City and in El Paso, Texas (Mexican). Women were approached and asked to participate in a short screening interview to determine study eligibility. Appointments were then scheduled for eligible women to return to the clinic or agency for the longer study interview. Participants Inclusion criteria for participation in the study were (1) being between 18 and 40 years of age, (2) being in a relationship with a primary male partner for at least one year, and (3) believing that the primary male partner had one or more sex partners outside the relationship during the past year. Exclusion criteria included ever having injected drugs, having used drugs such as cocaine or heroin during the past 6 months, and having used marijuana daily during the past 6 months. Pregnant women and those who had given birth in the past 6 months were also excluded. Forty-five Dominican, 62 Puerto Rican and 91 Mexican women were enrolled in the study. The women received $20 for their participation. Instrument The questionnaire was administered through a structured face-to-face interview with a female interviewer of the same ethnic background as the participant. Women could choose to have the interview conducted in either English or

HISPANIC WOMEN'S HIV-RELATED COMMUNICATION AND CONDOM USE 191

Table 15.1 Factor analysis - relationship characteristic items Factors and items

Openness of communication (a = 0.78) Does he listen when you need someone to talk to? Do you think that you and he have things to talk about? Can you tell him how you feel when you are upset? Conflict (a = 0.66) How often do you and your partner have arguments? How often do you and your partner have arguments where one of you leaves the house? How often have you thought about leaving your partner? Sex communication (a = 0.72) Do you find that it is too uncomfortable to talk with him about your sex life? (R)* Are you willing to talk about your sex life with him? Is it easy for you to talk to him about what you like to do during sex?

Factor loadings

0.82 0.61 0.76

0.61 0.59 0.81 0.74 0.76 0.79

This item was reverse scored.

Spanish. The questionnaire included measures of sociodemographic characteristics, sexual behaviour and condom use in the past 6 months, relationship characteristics, perceived risk for HIV, and HIV-related communication with the primary male partner. The following is a more detailed description of the variables used in the analyses. ACCULTURATION Women were asked to indicate how often they spoke Spanish in four different contexts: with their primary partner, with parents or older relatives, with friends, and with children or younger relatives. Their responses were scored on a 4-point scale from never to almost always. The four items were summed to create an index of acculturation (a = 0.83). PERCEIVED RISK FOR HIV Three questions assessed participant's perception of risk: (1) How much do you worry about getting the AIDS virus? (4-point scale: none to quite a lot); (2) What do you think your chances are of getting the AIDS virus? (4-point scale: no chance to good chance); and (3) How much do you worry about getting the AIDS virus from your husband/boyfriend? (4-point scale: none to quite a lot). These three items were summed to form an index of perception of HIV risk (a = 0.69). RELATIONSHIP CHARACTERISTICS Women were asked questions about the nature of their relationship with their primary partner. Responses were scored on a 3-point scale from never/rarely to always/almost always. These items were entered into a factor analysis, from which 3 factors emerged. The items, factor loadings, and Cronbach alphas for the three factors are presented in Table 15.1. The items within each factor were summed to create three separate indices of (1) openness of communication; (2) openness of sex communication; and (3) degree of conflict in the relationship.

192 J. MOORE etal.

EXPECTED PARTNER REACTIONS TO REQUESTS FOR CONDOM USE Participants were read a list of potential negative partner reactions to requests for condom use. Women indicated if they thought their partner would react in each of these ways if asked to use a condom. Women were given a score of 1 on the expectations variable if they believed their partner would react in at least one of the following ways: (1) he would think you were having sex with others; (2) he would think you were accusing him of having a disease; (3) he would get mad; (4) he would scream at you; (5) he would ignore you; (6) he would laugh at you; and (7) he would argue with you. Participants who said that he would not react in any of these ways were given a score of 0. Three other negative reactions were included in the list: he would hit or beat you; he would break up with you; and he would stop giving you money or support. However, because few women endorsed these items, they were not included as part of the expectations variable. HIV-RELATED COMMUNICATION

Five items were summed to create an index of HIV-related communication between the study participant and her primary partner (a = 0.74). Items included in this index were: (1) Have you and your partner ever talked about the AIDS virus? (2) Have you and your partner ever talked about being tested for the AIDS virus? (3) Have you told him that you were worried about getting the AIDS virus from him? (4) Have you ever asked your partner to be tested for the AIDS virus? and (5) Have you asked your partner to change his behaviour in any way so that he would not get the AIDS virus? (0 = No, 1 = Yes). Women who indicated that they had asked their partner to change his behaviour were then asked to specify the requests they had made of him. CONDOM USE

Condom use with primary partners was assessed with a question on frequency of condom use during vaginal sex in the past 6 months. The responses were collapsed into three categories: always use; sometimes use; and never use. Statistical Analyses Descriptive statistics were used to examine the rates of HIV-related communication and condom use. Differences between the three Hispanic subgroups were examined using chi-square and analysis of variance. Ordinary least squares regression was conducted to identify predictors of HIV-related communication, and logistic regression was used to examine factors influencing condom use.

RESULTS Description of the Sample The following analyses were conducted with 44 Dominican, 54 Puerto Rican and 91 Mexican women. (One HIV-infected Dominican woman and 8 Puerto Rican

HISPANIC WOMEN'S HIV-RELATED COMMUNICATION AND CONDOM USE 193

15.2 Participant characteristics by Hispanic subgroup (%} Dominican (n = M) Born in the continental US Education < High school High school > High school Lives with primary partner Receives public assistance

Mexican (n = 9 } )

Puerto Rican (77=54)

P-value

6.8

44.4

18.2

0.001

22.7 34.1 43.2 61.4 54.6

15.4 32.7 51.9 44.4 70.4

46.2 23.1 30.8

0.002

0.0001 0.01

100

79.1

women with extensive missing data were excluded from the analyses.) The mean age of women in the study was 30, with no age differences among the three Hispanic subgroups. Overall, most of the study participants were born outside the continental United States (77%), had at least a high school education (68%), lived with their primary partner (75%), and received some type of public assistance (71%). Differences among the three Hispanic subgroups on these sociodemographic variables are presented in Table 15.2. Generally, Puerto Rican women were significantly more likely to have been born in the continental US and were more highly educated than women from the other two subgroups. Mexican women were more likely than Dominican and Puerto Rican women to live with their primary partner. Dominican women were least likely to receive some type of public assistance. Description of Predictors Table 15.3 contains the mean values of predictor variables for the overall sample and for each subgroup. In general, women had low scores on the acculturation index and moderate scores on perceived risk, openness of communication, conflict and sex communication. The three Hispanic groups did not differ in their perceived risk for HIV or the openness of sex communication. Puerto Rican women were more acculturated than women from the other two groups. Mexican Table 15.3 Mean values on predictor variables for entire sample and each Hispanic group

Acculturation (Potential range 0-1 2) Perceived risk (Potential range 0-9) Openness of communication (Potential range 0-6) Conflict (Potential range 0-6) Sex communication (Potential range 0-6)

Entire Sample (/7=189)

Dominican (n = 44)

Puerto Rican (n = 54)

Mexican (n = 91)

P-value

2.2

1.8

3.7

1.4

0.0001

5.5

6.0

5.4

5.3

ns

4.0

4.3

4.2

3.6

0.05

2.8

2.1

3.3

2.9

0.002

3.8

3.9

4.1

3.5

ns

194 J. MOORE etal.

Table 15.4 Percentage of women in each Hispanic group responding 'yes' to HIV-related communication items (%)

Ever talked about AIDS? Ever told him you were worried about getting the AIDS virus from him? Ever talked about being tested? Ever asked him to be tested? Ever asked him to change his behaviour so that he does not get the AIDS virus?

Dominican (n = 44)

Puerto Rican (n = 54)

Mexican (n=91)

P-value

79.6

77.8

89.0

ns

77.3 54.6 52.3

77.4 72.2 63.0

63.7 27.5 26.4

ns 0.0001 0.0001

61.4

51.0

61.8

ns

women reported less open communication with their partners, whereas Dominican women reported less conflict. When asked how they thought their partner would react to a request for condom use, few participants expected severe reactions from their partners, including physical violence (4.5%), loss of financial support (1.2%), or loss of the relationship (4.1%). Instead, the majority of women (74%) expected that their partner would have milder negative reactions (e.g., get mad, suspect her of having sex with someone else, interpret the request as an accusation that he had a disease). Puerto Rican women were least likely to expect any negative reaction from their partner (Puerto Rican, 61%; Mexican, 78%; Dominican, 82%). Description of HIV-Related Communication The mean for the entire sample on the HIV-related communication index was 3.0 (range = 0-5). Puerto Rican (mean = 3.4) and Dominican women (mean = 3.3) reported more HIV-related communication with their primary partner than did Mexican women (mean = 2.7; P < 0.02). Responses to the individual items that make up this index are shown in Table 15.4 by Hispanic subgroup. Most of the participants (84%) had talked about HIV with their partner, and 71% had told their partner they were worried about getting the AIDS virus from him. Forty-seven per cent of the women had talked with their partner about being tested for HIV and 43% had asked him to be tested. The majority of participants (59%) had asked their partner to change his behaviour in some way so that he would not get the AIDS virus. Group differences were found on the testingrelated communication items: Mexican women were less likely than the other women to talk about being tested or to request that their partner be tested. Women who had asked their partner to change his behaviour were asked to specify the requests made. Table 15.5 presents the specific requests made of partners by Hispanic subgroup. Fifty-five per cent of the women asked their partner to stop having sex with others, 14% asked him to reduce his number of sex partners, and 36% asked him to use condoms when having sex outside the relationship. Mexican women were less likely than women in the other groups to request that their partner reduce his number of sex partners and that he use condoms with other partners.

HISPANIC WOMEN'S HIV-RELATED COMMUNICATION AND CONDOM USE 195

Table 15.5 Requests for partner behaviour change by women in each Hispanic group (%) Specific requests* Reduce number of sex partners Stop having sex with others Use condoms with others

Dominican (n=27)

Puerto Rican (n=27)

Mexican (n = 55)

P-value

37.0 66.7 59.3

18.5 40.7 48.2

0 56.4 18.2

0.0001 ns 0.0001

* Some women made more than one request, so the total will not add up to 100%

Prediction of HIV-Related Communication Ordinary least squares regression analysis was used to examine the effects of perception of risk, relationship variables (openness of general and sexual communication and degree of conflict in the relationship), and expected negative reactions from partner on HIV-related communications. Characteristics of the women, including age, Hispanic subgroup, level of acculturation, and whether she had multiple sex partners, were also included in the equation. Results showed that women who perceived greater risk of becoming HIV-infected and reported more open communication in their relationship with their male partner communicated more with him about HIV-related issues (Table 15.6). Mexican women and women who themselves had other sex partners were less likely to communicate with their main partner about HIV-related issues. Description of Condom Use Overall, 74% of the study participants reported never using condoms with their primary partner in the past 6 months, 13% reported sometimes using condoms, and 13% reported always using them. The three Hispanic subgroups differed significantly in their frequency of condom use, with Mexican women the least likely to report any condom use (P < 0.05). Sixty-three per cent of the Puerto Table 15.6 Ordinary least sauares rearession of factors associated with HIV-related communication Standardized parameter estimate

lvalue

Age Subgroup 1 Dominican vs Puerto Rican Subgroup 2 Mexican vs Puerto Rican Education

0.06 -0.14

0.40

-0.36

0.0003

-0.04

0.57

Acculturation Woman has other sex partners

0.08 -0.28

0.32 0.0003

Perceived risk Openness of communication Openness of sex communication

0.30 0.17 -0.07

0.0001 0.05 0.37

Conflict Expect negative partner reaction to request for condom use

0.04 -0.05

0.62 0.50

0.13

196 J. MOORE etal. Table 15.7 Logistic regression of factors associated with condom use Standardized parameter estimate Age Subgroup 1 Dominican vs Puerto Rican Subgroup 2 Mexican vs Puerto Rican Education Acculturation Woman has other sex partners Perceived risk Openness of communication Openness of sex communication Conflict Expect negative partner reaction to request for condom use HIV-related communication

P-value

-0.31 0.18

0.03 0.26

-0.25

0.17

0.23 0.13 -0.01 0.05

0.13 0.34 0.97 0.74 0.95 0.79 0.52 0.0001 0.10

-0.01 0.04 0.10 -0.54 0.24

Rican women and 67% of the Dominican women reported that they and their partners had not used condoms at all during vaginal sex in the last 6 months, whereas 83% of Mexican women reported no condom use. Only 17% of the Puerto Rican, 21% of the Dominican, and 7% of the Mexican participants indicated that they and their partners had always used condoms during vaginal sex in the past 6 months. Prediction of Condom Use Because of the skewed distribution of condom use, logistic regression analyses were conducted with two levels of condom use (never use versus sometimes or always use). The primary predictor variables of interest were perception of risk, openness of general and sexual communication, degree of conflict in the relationship, expectations regarding partner's reaction to request for condom use, and HIV communication. Characteristics of the woman, including age, ethnicity, acculturation, and whether she had other sex partners, were also included as predictors. Results of this logistic regression are presented in Table 15.7. Women who expected negative reactions from partners were less likely to report any condom use with the primary partner. Additionally, HIV-related communication was marginally related to condom use: those who reported more HIV communication were more likely to use condoms with their primary partner. Finally, older women were less likely to report any condom use with the primary partner, and there was a trend for Mexican women to report less condom use.

DISCUSSION This study explored HIV-related communication and condom use with male partners among three groups of Hispanic women at risk for heterosexually acquired HIV. Results indicate that HIV is a salient issue for most of these

HISPANIC WOMEN'S HIV-RELATED COMMUNICATION AND CONDOM USE 197

women, and many are concerned that their partner's behaviour puts them at risk for HIV. A majority of these women have expressed these concerns to their primary male partner in some form: most have had general discussions with their partners about HIV, and a majority have asked their partner to be HIV tested and to change his behaviour to reduce his chances of acquiring HIV. Because these women were recruited from health clinics and social service agencies, they may have had more information about HIV/AIDS and HIV testing than the average women in these communities. Thus, the issue of HIV/AIDS may have been particularly salient to them, thereby increasing their communication and condom use with their partner. Although many women reported fairly extensive HIV-related communication with their partner, a substantial number reported minimal communication. As predicted, lower levels of HIV-related communication were associated with lower perceptions of HIV risk. Women who do not perceive themselves to be at risk for HIV have less reason to discuss HIV and safer sex behaviours with their partners. However, because all women in this study believed their partners had other sex partners, one would expect that all would be concerned about HIV risk. Women reporting less perceived risk, however, may have had objective information indicating that their partners were only at minimal risk for HIV. On the other hand, women may have been denying their HIV risk. Although they were willing to admit that their partners had other sex partners, they may have denied the implications of his behaviour for their own HIV risk. Women who deny their HIV risk are obviously less likely to bring up issues of HIV risk or attempt behaviour change within the relationship. These findings suggest the important influence of beliefs about risk for acquiring HIV from primary partners on willingness to initiate HIV discussions and behaviour change in primary, stable relationships. The first intervention step with many women may be to work through barriers to objectively assessing HIV risk. The level of general communication in the relationship was also related to level of HIV communication: women who felt their partner was open to discussions of their general concerns reported more HIV-related communication in their relationship. This finding suggests that interventions aimed at improving the general communication skills of heterosexual couples may assist them in broaching issues of HIV risk and behaviour change. Prevention activities aimed at couples rather than the individual members of the couple may be more effective at promoting HIV-related communication. Women in the study who had multiple partners themselves reported less HIV communication with primary male partners than did women with only a primary partner, even after the level of general communication in the primary relationship was controlled for. Women who have other partners may be unwilling to confront their primary partner about the HIV risk posed by his behaviour because doing so may raise issues related to their own sexual behaviour outside the relationship. Unfortunately, couples in which both members have multiple partners may be most in need of confronting and discussing HIV risk.

198 J. MOORE etal.

Finally, HIV communication was different across subgroups of Hispanic women: Mexican women reported lower levels of HIV communication with male partners when level of acculturation was controlled for. There are several potential explanations for this finding. Mexican women may follow more traditional sex roles that discourage assertive sexual behaviour by women. Alternatively, because the Mexican community in the Southwest has fewer reported AIDS cases than either the Puerto Rican or Dominican communities in the Northeast (Diaz et al., 1993), HIV may be a less salient issue in the Mexican community than in the other two communities. Because Hispanic group and geographic region were confounded in this study, we could not distinguish effects due to ethnicity and those due to regional and HIV seroprevalence differences. This study also described the frequency of condom use by women and their primary partners and examined predictors of condom use, with particular interest in the relationship between HIV-related communication and condom use. Although all groups reported low levels of condom use in the primary relationship, younger women reported more use than older. In qualitative interviews conducted as part of this project, women reported that condoms were easier to introduce early in a relationship; this finding may partially account for the relationship between age and condom use (Deren et al., 1996). Mexican women reported less condom use with their primary partner than either Dominican or Puerto Rican women. However, when education and acculturation were statistically controlled, no differences in reported condom use were found among the three Hispanic subgroups. The level of HIV-related communication was marginally related to condom use. There are a number of explanations for the finding that women who had discussed HIV-related issues with their partners reported more condom use in the relationship. Couples who are most concerned about HIV risk may be more likely to talk about the topic and take action in the form of condom use. However, holding perception of risk constant did not eliminate the relationship between HIV communication and condom use. Alternatively, couples with more open communication and intimacy in their relationships may talk more about HIV and risk behaviour and be more open to condom use. Controlling for quality of the relationship, however, did not completely eliminate the association between HIV communication and condom use. Another possible explanation is that women who are more able to initiate conversations about HIV and risk behaviour are also more able to initiate condom use in the relationship. Finally, it is possible that HIV-related discussions themselves promote condom use: if a couple begins to talk about HIV-related issues, then protective behaviour may naturally ensue. Understanding the nature of the relationship between HIV communication and condom use has important implications for intervention and should be thoroughly investigated in future studies. Finally, the strongest predictor of condom use was expectations about the partner's reaction to request for condom use. Again, there are several potential explanations for these findings that cannot be easily disentangled from the cross-

HISPANIC WOMEN'S HIV-RELATED COMMUNICATION AND CONDOM USE 199

sectional data presented. Women who expect partners to react negatively to suggestions of condom use may not confront these issues and, thus, condoms are not used. These expectations may or may not be based on the partner's actual feelings about and probable reactions to condom use. Interventions that allow couples to discuss their expectations about partner reactions and to assess the validity of their expectations may result in more open and honest discussions about condom use. On the other hand, past condom use with the primary partner may be driving the woman's expectations, with the result that women whose partner uses condoms with them report that he will not react negatively to future requests for condom use. Additional research is needed to determine cause and effect in this complex association. Without a clearer understanding of the dynamics of heterosexual relationships in which one or both persons are at risk for HIV, interventions are unlikely to be sufficiently sensitive or targeted to produce meaningful behaviour change. This study offers an initial examination of the intricate patterns of interaction among stable couples and how these interactions may affect behaviours that reduce the risk for HIV.

REFERENCES Amaro, H. (1988) Considerations for prevention of HIV infection among Hispanic women. Psychology of Women Quarterly, 12, pp. 429-443. Becker, M. H., Haefner, D. P., Kasl, S. V., Kirscht, J. P., Maiman, L. A. and Rosenstock, I. M. (1977) Selected psychosocial models and correlates of individual health-related behaviors. Medical Care, 15 (Suppl. 5), pp. 27-46. Biddlecom, M. A. and Hardy, A. M. (1991) AIDS Knowledge and Attitudes of Hispanic Americans: United States, 1990. Provisional data from the National Health Interview Survey, October, No. 207. Carovano, K. and Middlestadt, S. (1993) Understanding women's prevention behavior, in: W. A. Smith et al. (eds), A World against AIDS: Communication for Behavior Change (Washington, DC, Academy for Educational Development). CDC (Centers for Disease Control and Prevention) (1994) HIV I'AIDS Surveillance Report, 6(1). Dawson, D. A. and Hardy, A. M. (1989) AIDS Knowledge and Attitudes of Hispanic Americans: United States, 1988. Provisional data from the National Health Interview Survey, April, No. 166. Deren, S., Shedlin, M. and Beardsley, M. (1966) HIV-related concerns and behaviors among Hispanic women. AIDS Education and Prevention, 8(4), pp. 335-42. Diaz, T., Buehler, J. W., Castro, K. G. and Ward, J. W. (1993) AIDS trends among Hispanics in the United States. American Journal of Public Health, 83, pp. 504-509. Fullilove, M. T., Fullilove, R. E., Haynes, K. E. and Gross. S. (1990) Black women and AIDS prevention: a view towards understanding the gender rules. Journal of Sex Research, 27, pp. 4—64. Heller, C. S. (1966) Mexican-American Youth: Forgotten Youth at the Crossroads (New York, Random House). Hobfoll, S. E., Jackson, A. P., Lavin, J., Britton P. J. and Shepherd, J. B. (1993) Safer sex knowledge, behavior, and attitudes of inner-city women. Health Psychology, 12, pp. 481—488. Ickovics, J. R. and Rodin, J. (1992) Women and AIDS in the United States: epidemiology, natural history, and mediating mechanisms. Health Psychology, 11, pp. 1-16.

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Kline, A., Kline, E. and Oken, E. (1992) Minority women and sexual choice in the age of AIDS. Social Science and Medicine, 34, pp. 447-457. Madsen, W. (1961) Society and Health in the Lower Rio Grande Valley (Austin, TX, Hogg Foundation for Mental Health). Marin, G. and Marin, B. V. (1991) Research and Hispanic Populations (Newbury Park, CA, Sage Publications). Marin, B. V., Gomez, C. A. and Hearst, N. (1993a) Multiple heterosexual partners and condom use among Hispanics and non-Hispanic whites. Family Planning Perspectives, 25, pp. 170—174. Marin, B. V., Tschann, J. M., Gomez, C. A. and Kegeles, S. M. (1993b) Acculturation and gender differences in sexual attitudes and behaviors: Hispanic vs non-Hispanic white unmarried adults. American Journal of Public Health, 83, pp. 1759-1761. Mays, V. M. and Cochran, S. D. (1988) Issues in the perception of AIDS risk and risk reduction activities by black and Hispanic/Latina women. American Psychologist, 43, pp. 949-957. Sabogal, F., Faigeles, B. and Catania, J. A. (1993) II. Multiple sexual partners among Hispanics in high-risk cities. Family Planning Perspectives, 25, pp. 257-262. Wingood, G. M. and DiClemente, R. J. (1992) Cultural, gender and psychosocial influences on HIVrelated behavior of African-American female adolescents: implications for the development of tailored prevention programs. Ethnicity and Disease, 3, pp. 381-388. Worth, D. (1989) Sexual decision-making and AIDS; why condom promotion among vulnerable women is likely to fail. Studies in Family Planning, 20, pp. 297-307. Worth, D. (1990) Minority women and AIDS: culture, race and gender, in: D. A. Feldman (ed.), Culture and AIDS: the Global Pandemic (New York, Praeger), pp. 1-43.

PARENTS AND CHILDREN

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SIXTEEN

Orphan Prevalence and Extended Family Care in a Peri-Urban Community in Zimbabwe Geoff Foster, Ruth Shakespeare, Frances Chinemana, Helen Jackson, Simon Gregson, Choice Marange and Stanley Mashumba

BACKGROUND The problem of increasing orphanhood in areas of sub-Saharan Africa badly affected by the HIV epidemic has been receiving increasing attention (UNICEF, 1991). A number of studies have attempted to predict the future impact of the HIV epidemic on orphanhood (Preble, 1990; Bos, 1991; Palloni and Lee, 1992; Gregson et al., 1994). By 1992, it was estimated that there were 1.1 million HIVinfected children throughout the world and that 575,000 children had contracted AIDS. At that time, 1.8 million children were estimated to have lost one or both parents as a result of AIDS (Mann et al., 1992). By the year 2000, WHO have estimated that more than 10 million uninfected children will be orphaned because either parent will have died of AIDS (Chin, 1990). Poorer communities may be in double jeopardy with regard to the requirement to care for orphans. Firstly, they may be least able to take measures to avoid HIV infection so that the absolute numbers of children becoming orphans may be higher in poorer than in more affluent communities. Secondly, these communities are less able to provide support to orphans due to their limited economic resources. Simulations of the impact of the HIV epidemic upon the demography of populations suggest that the orphan burden could exceed one orphan for every two healthy economicallyactive women (Gregson et al., 1993). The first systematic attempt to enumerate orphans and study their social and economic characteristics was conducted in Uganda in 1989 (Hunter, 1990; Dunn, 1992). The wide variations that occur in orphan prevalence even in different surveys performed in the same area suggest that methodological differences in enumeration surveys are important (Table 16.1). Orphan children and families may be undercounted as a result of superficial enumeration (Gregson et al., 1994).

204

G. FOSTER et al.

Table 16.1 Orphan prevalence at various sites

Location

Orphan definition (age in years)

Sample size and site

4.4

Hoima, Uganda

under 1 8

4.9

Masaka, Uganda

under 1 5

4.5 5.6

Nairobi, Kenya Luwero, Uganda

under 1 8 under 1 8

6

N.W. Tanzania

under 1 7

6.8 8.7'

Manicaland, Zimbabwe Tanzania

under 1 5 unknown

10

Masaka, Uganda

under 1 5

10.2

Lusaka, Zambia

under 20

12.8

Rakai, Uganda

under 18

25 47

Rakai, Uganda Masaka, Uganda

under 1 8 unknown

5967 orphans in District 15,41 9 orphans in District 9 villages in slum 1 1 ,879 orphans in District unknown; Bukoba District 596 households 1 369 families, 6 villages 5022 children, 15 villages high-density city area 17,148 orphans in District 1 village 6 villages

Orphan prevalence (% children)

Reference Dunn, 1992 Dunn, 1992 NduatieM/., 1993 Dunn, 1 992 Mukoyogo and Williams, 1991 Fostered a/., 1992 UKIMWI, 1993 Kamaliefa/., 1992 Mataka, 1993 Dunn, 1992 Hunter, 1990 Naerland, 1993

' Prevalence stated is orphans as percentage of total population.

The progression of the HIV epidemic in Zimbabwe has been rapid. Anonymous unlinked surveillance of pregnant women in 14 urban and rural antenatal clinics during 1990-92 found 20.5% (734/3,587) to be HIV-positive. Rates in rural areas in Manicaland Province were 13.9% (1991) and 16.0% (1993) whilst in one small town in the Province antenatal surveillance found 46% women to be HIV-positive in 1993 (MOH, 1993). In 1991, an orphan enumeration survey was conducted in Manicaland (population 1.57 million) during the course of a national maternal and child health survey (Foster et al, 1992). Overall, 8.9% (52/586) of households contained orphans; 6.8% (120/1775) of children were orphans. On the basis of these figures, it was estimated that there were 47,000 orphaned children in the province. The rapid recent increase in parental deaths suggests that AIDS may be responsible for the increasing number of orphans being seen by health and social welfare agencies throughout the province (Shakespeare, 1992). Nineteen institutions throughout the province were found to contain 170 orphaned children; thus over 99% of orphaned children were being cared for by extended families within the community (Shakespeare, 1992). In spite of the enormity of the current and impending orphan crisis, and despite the call urgently to mobilize resources for data collection and planning in order to avert disaster, there has been little evidence of such mobilization taking place (Hunter, 1990). Little is known about the mechanisms that exist to support orphaned children within extended families. Descriptions of the orphan situation have tended to concentrate on cases where family support mechanisms have

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appeared to break down (Armstrong, 1993); by emphasizing failures of the extended family system of caring and by suggesting innovative non-traditional strategies of support such as orphanages, foster homes, day care centres and the use of schools as parenting facilities, published literature may contribute to the undermining of extended family coping mechanisms (WHO, 1990; UNICEF, 1991; WHO, 1992). In Manicaland, these concerns led to the establishment of a collaborative research team to enumerate orphans and document socio-economic, health, educational and cultural factors relating to their situation. The research took place in the urban area of Mutare (population 131,800), the capital of Manicaland province, and in the surrounding rural area of Zimunya, including communal farmlands some 10-90 km from Mutare City. Sakubva (population 52,600) is an old suburb of Mutare with poor quality unserviced housing; residents have access only to communal ablution blocks and water installations. The critical shortage of accommodation has led to the construction of wooden shacks on many plots. Dangamvura (population 39,800), in contrast, is a relatively newly-developed suburb where most houses are of the self-build core-house type located on serviced stands. In Zimunya communal area (population 53,400), subsistence farming is the primary economic activity. Sanitary facilities are not well developed, with few families using conventional ventilated pit latrines. Electricity is available at a few isolated rural service centres. Public transport is facilitated by regular buses which connect the area with Mutare by a network of gravel and two wide tarmac roads. METHOD The definition of 'orphan' used in this paper is of a child aged 14 years or less whose mother and/or father has died. This definition is one commonly used in studies of children orphaned as a result of AIDS (WHO, 1990). This is consistent with the understanding of the concept of orphan (nherera) employed in Zimbabwean (Shona) culture. 'Mixed' households were defined as households in which orphaned children were living with non-orphaned children; in 'pure' households, all children were orphaned. The study sample consisted of 60 clusters of 10 households, randomly selected with sampling weighted to reflect population data; within each cluster the first 10 households containing at least one child under 15 years old were sampled. Thirty clusters were sampled from 10 wards in Zimunya; 18 clusters were selected from Sakubva and 12 clusters from Dangamvura, the two main townships of Mutare. All households were surveyed during a two-month period in 1992. Basic demographic and socio-economic data was obtained from all households surveyed. A household was defined as one which normally cooked and ate food together. Households which were identified as having orphans resident within them were re-interviewed within a month. Detailed genograms and information concerning

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orphan care and parental deaths (including death certification information where available) were obtained from these households. Interviewers were trained to use a simple verbal autopsy method to determine the cause of parental death; respondents were asked to name the cause of death and about specific symptoms of the parent's terminal illness, including TB, weight loss, herpes zoster, chronic diarrhoea or oedema. Deaths were attributed to categories of not AIDS, possible AIDS, probable AIDS or undetermined, using the following criteria: Category

Criteria

Not AIDS

Death before 1987 Death 1987 or after from trauma or well-defined illness Death 1987 or after and male, age not known and at least one of TB, weight loss, diarrhoea, swollen body or death 1987 or after and female, aged under 40 years and no well-defined cause of death Death 1987 or after and age under 55 years and at least one of TB, weight loss, diarrhoea, swollen body, herpes zoster All other deaths, 1987 or after

Possible AIDS

Probable AIDS

Undetermined

Focus group discussions were conducted with 12 groups of caregivers, community members and teachers; the objectives of these discussions were to assess perceptions of coping behaviours of families, communities and orphaned children, to obtain information concerning discrimination, exploitation or stigmatization of orphaned children and to assess what potential existed for the development of community-based initiatives. Screening interviews were conducted by 20 community development workers and community volunteers associated with an AIDS Service Organization. Focus group discussions and interviews with orphan households were conducted by women living in the communities surveyed who had previous experience in community research and home visiting. All interviewers were trained during a one-week period by a social scientist with previous experience of conducting community-based research. A pilot survey was conducted prior to carrying out the actual research and the results were discussed with interviewers in order to improve the quality of data collection. Data from interview schedules were analysed statistically using Epi info version 5 (Dean et al, 1990). Other information from interview schedules and focus group

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Table 16.2 Education of head of household Type of household

No school

Primary school

Rural

30(11%) 5(11%) 17(9%) 16(25%)

1 1 1 (40%) 30 (68%) 132(73%) 37(61%)

Urban

No orphans Orphans No orphans Orphans

Secondary school

Total

136(49%) 9 (20%) 32(18%) 8(13%)

277 44 181 61

discussions was analysed empirically and important themes were included in the survey findings.

RESULTS Respondents

The 30 urban clusters yielded 322 households; with the large number of squatter stands and shacks in the city, it was possible to find two or three separate households at one address. The 30 rural clusters yielded 248 households. One complete ward of 3 clusters (30 households) was omitted from the survey results because of poor data quality. In some villages fewer than 10 households were interviewed because a suitable respondent was not available during the survey period. The householder interviewed was female in 88.9% of cases, with no difference between orphan and non-orphan households. There was a significant difference in age of respondent; the median age of respondent in non-orphan households was 30 years (range 10-75 yrs) and for orphan households 38 (range 13-92 yrs) (P = 0.00068, Kruskal-Wallis H = 1.159). There was a significant difference between orphan and non-orphan households in the level of education of the head of household. Urban orphan household heads were less likely to have attended secondary school than non-orphan household heads (%2 = 12.6, P < 0.0005); rural orphan household heads wer less likely to have attended primary school than non-orphan household heads (x2 = 11.0, P< 0.001) (Table 16.2). Orphan Prevalence Of the 570 households interviewed, 105 (18.3%, 95% CI 15.1-21.5%) included children aged 0-14 years who had lost one or both parents. A total of 1723 children aged 0-14 years lived in these 570 households; 12.8% of the total children surveyed were orphans (95% CI 11.2-14.3%); a further 6.6% (11 children) were non-orphans living in orphan households. Orphan prevalence was lowest in Dangamvura and highest in Zimunya (Table 16.3). Orphan prevalence rose with age from 4.9% of under-fives to 23.9% of 10-14 year olds (Table 16.4). Of the 105 orphan households, 83 (79%) were interviewed in greater detail; 39 (47%) of these were pure orphan households containing only orphaned children;

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Table 16.3 Orphan prevalence by site Site

Total households

Orphan households

Total children

Orphans (%)

Dangamvura Sakubva Zimunya

127 195 248

1 1 (8.7%) 32(16.4%) 61 (24.6%)

376 477 870

16(4.3%) 55(11.5%) 149(17.1%)

Total

570

105(18.3%)

1723

220(12.8%)

44 (53%) of these households were mixed containing both orphaned children and non-orphans. In 22 households, no suitable respondent was available or the orphan household was initially miscoded so that a follow-up interview was not arranged. In 5 out of 83 families, orphaned children had been relocated between rural and urban areas. In each case, the direction was from rural to urban area; in four cases, this followed the death of the father when the mother relocated with her orphaned children to town. Parental Deaths

One hundred and eighty (81.8%) orphans had lost their father, 30 (13.6%) their mother and 10 (4.5%) had lost both parents (Table 16.5). Parental deaths were reported from 1979 until the end of July 1992. In 12 out of 109 cases, the date of parental death was not known. Of the remaining 97 deaths, 46 (47.4%) had occurred since January 1990 (Figure 16.1). The expected distribution in the absence of AIDS is derived using a mathematical model outlined in Gregson et al. (1993) and represents that which would be expected given constant age-specific mortality rates similar to those observed in the 1987 Zimbabwe Inter-Censal Demographic Survey (Mandishona, 1991). These levels Table 16.4 Orphan prevalence by age group Age group (years) 0-4 5-9 10-14

Total

Children in orphan households

Orphans

589 582 552

86 109 139

29 59 132

57 50 7

4.9 10.1 23.9

1723

334

220

114

12.8

Total children

Non-orphans

Orphans as % of all children

Table 16.5 Orphaned children by age group and parent lost Age group (years)

Father dead

Mother dead

Both parents dead

0-4 5-9 10-14

24 51 105

5 2 23

0 6 4

29 59 132

Total

180

30

10

220

Total

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Figure 16.1 Orphans by year of death of parent: percentage distribution (D, survey distribution; —, expected distribution in the absence of AIDS).

of mortality equate to life expectancies at birth of 55.3 years and 58.6 years for males and females, respectively. From 1989, the deaths observed were consistently more than would have been expected from projection of 1987 census data. Detailed information on the cause of parental death was obtained for 87 out of 109 deceased parents (79.8%). Only one family gave AIDS as the cause of death of a parent. Causes of death were reclassified to different categories on the basis of verbal autopsy information, gender, age of parent at death and year of death; no deaths were classified as being due to possible or probable AIDS before 1987 (Table 16.6). Overall 28 out of 87 (32.2%) deaths were due to probable or possible AIDS; 28 out of 56 (50%) deaths occurring since 1987 were due to AIDS. The average age of parental death in those dying before 1987 was 45.7 years; in those dying from probable or possible AIDS, the average age was 34.3 years. Nature of Caregiver (Table 16.7) Most orphaned households (64 out of 76, 84%) were being looked after by a member of the maternal family; the paternal family was responsible for looking Table 16.6 Year of death of parent and category of death Motf lers Year of death

1979-86

Fatrlers 1987-92

1979-86

1987-92

Total 45 14 14 14 87

Not AIDS Possible AIDS Probable AIDS Undefined

6 0 0 0

3 6 5 3

25 0 0 0

11 8 9 11

Total

6

17

25

39

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Table 16.7 Relationship of caregiver in 83 orphan families Number of orphaned children families Caregiver

Father dead

Mother dead

Both parents dead

Total

Cared for by maternal relative

Mother Father Aunt Grandmother Sister Sister-in-law Stepmother

48 0 6 5 0 0 1

0 3 4 6 3 1 1

0 0 3 1 0 1 0

48 3 13 12 3 2 2

48/48 0/3 7/13 9/12

Total

60

18

5

83

64/76 (84%)

after orphaned children in only 12 out of 76 (16%) families. Fifty-one out of 83 (61%) orphan households were living with the surviving parent. After the death of the father, 48 out of 60 (80%) orphans were being looked after by the mother. However, after the death of the mother only 3 out of 18 (17%) orphan households were being looked after by the father. In five families care was being provided by a sister or sister-in-law. In two cases, older sisters had stopped attending school in order to care for younger orphans. Characteristics of Families of Children Orphaned due to AIDS Since 1987, 28 parental deaths were ascribed to probable or possible AIDS; the characteristics of these families were compared with those of 14 parental deaths since 1987 which were from well defined causes categorized as not due to AIDS. Differences between the characteristics of these two categories of orphans did not achieve statistical significance, possibly due to the small sample size. Children orphaned due to AIDS may be younger than children orphaned due to other causes, more likely to be maternal orphans, more likely to be living in low income areas, and more likely to be out of school than children orphaned due to other causes. Social Factors, Stigmatization and Discrimination PLANNING FOR CHILDREN BEFORE PARENTAL DEATH

It was unusual for succession planning to take place when it was known that a person was dying. It was considered improper to raise such an issue with a dying person since the relative might be accused of causing the sickness or death by showing too great an interest in the property. A dying man might however stipulate what he wanted done with his wife, children and property. A relative instructed by the dying man to look after his property would be obliged to say 'yes' in such a situation, for fear that some misfortune would befall if they did not agree to a dying man's request.

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RELOCATED AND SPLIT FAMILIES OF ORPHANED CHILDREN In 14 out of 83 families, orphans who were already being cared for were subsequently moved to another relative's home, often some time after the death of the parent. Overall, there were five cases of rural-urban relocation, in four cases following the death of the father when the mother relocated her family to town. Four groups of orphaned children had been separated from one another and were living with different relatives. ORPHANED CHILDREN INFORMED OF THE DEATH OF THEIR PARENT In 7 out of 83 (8%) of the families, orphans had not been told that their parents had died. Most orphans over the age of 7 or 8 years old had been told of their parent's death by their caregiver. Informants explained that they found it difficult to explain to young children that the parent had actually died. They preferred to tell the child that the parent had gone away and would return sometime later, even in the knowledge that this might cause distress to the children when they later found out about the death. STIGMATIZATION AND DISCRIMINATION

Focus group discussions with community members indicated the presence of stigmatization of orphans in their community: orphaned children were likely to be known by other community members as being children whose parent had died. They might be socially isolated as a result - 14 out of 83 households specifically mentioned the presence of other orphans in their orphaned children's circle of close friends; one family mentioned that orphaned children in their care had no friends. Orphans were said to have a generally unhappy existence and were reported to be neglected and to suffer from a lack of care, lack of food and health problems; even young children would be put to work and carers were said not to provide school fees. Some community members gave examples of orphans who had been exploited or beaten physically who had subsequently run away from their home. By contrast, there were no instances of informants displaying negative attitudes towards orphans in their care during interviews; on the contrary, caregivers expressed appropriate concern for the welfare of their orphaned children. None of the caregivers considered that their care of orphaned children was likely to be a temporary measure; some expressed concern that the children might be removed from them as a result of internal family disputes. Caregivers indicated they would seek to obtain bride price when female orphans in their care were about to be married, a sign that the girls were considered as part of their new family. Community members remarked upon how well-behaved orphans were. Some commented that orphans were quiet, careful children who were likely to be blamed or beaten for family misfortunes. They might be given excessive amounts of work to perform in their adopted home and be treated differently from the caregiver's biological family. Teachers stated that it was common to be able to

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identify orphaned children by such behaviour or by the fact that they had no school fees, poor clothes or lacked food. DISCUSSION Orphan Prevalence and Under-Enumeration The orphan prevalence of 12.8% found in this study in Manicaland is almost double the 6.8% rate found during the 1991 survey and may reflect more complete enumeration of orphans undertaken in an area with a high HIV prevalence (Foster et al., 1992). The 1991 survey covered a wider area, and orphan children and families may have been undercounted as a result of superficial enumeration (Gregson et al., 1994). Under-enumeration rates of up to 50% were noted in Uganda (Dunn, 1992), illustrating the difficulty of conducting enumerations involving large numbers of enumerators. Under-enumeration may be more common among orphans living in mixed households: in this study, 53% of households which contained orphans were mixed. This study identified orphans by means of thorough identification by name, age and status of both biological parents of each child under 15 years old in every household; some households of 4 children in this study had 8 different biological parents. Painstaking identification of orphan households may lead to more accurate enumeration. Parental Deaths due to AIDS The study demonstrates a recent increase in parental deaths: in retrospective studies of children and parental deaths one would expect more deaths in recent years (expected distribution in Figure 16.1); the number of recent deaths found in this study was greater than expected after 1988 and showed a similar trend to the 1991 survey. Verbal autopsy methods are useful for ascertaining the cause of death for diseases that present with relatively distinct syndromes (Gray et al., 1989). No attempt has been made in most orphan studies to ascertain the reasons for orphanhood. It is assumed that recent increases in orphan numbers are the result of AIDS. This study utilized a simple verbal autopsy method to ascertain AIDSrelated symptoms. Whilst the inaccuracy of the method used for ascribing AIDS as the cause of death is acknowledged, this exploratory approach appeared justified in view of the importance of AIDS as a cause of death. Further research to assess the accuracy of methods of classifying AIDS deaths utilizing combinations of symptoms, age, year of death and social criteria is required. Overall, 32% were categorized as being due to probable or possible AIDS: this compares with 25% in Nairobi, Kenya (Nduati et aL, 1993). A study of a population in the Rakai district of Uganda with an adult HIV prevalence of 8.2% found more than half the adult deaths and over 80% of deaths in young adults

ORPHAN PREVALENCE AND EXTENDED FAMILY CARE 213

were associated with HIV (Mulder et al., 1994): the orphan prevalence in this population using the same definition as this study was 10% (Kamali et aL, 1992). Thus the Zimbabwe data shows a problem of similar magnitude to that in Uganda. Parents dying of AIDS were significantly younger than parents dying from well-defined (non-AIDS) causes after 1987 or from any causes before 1987; however, a bias must be noted, since age at death was an identifying criterion for classification as AIDS. These data suggest that AIDS is leading to an increasing proportion of maternal orphans and an increasing proportion of orphaned children under 5 years old. Other differences which did not achieve statistical significance were that children orphaned by AIDS were more likely to be looked after by someone other than the mother and be cared for by a relative from a different generation than that of the parents. Children orphaned by AIDS were more likely to be living in low-income areas and to be out of school than children orphaned due to other causes. These findings may reflect the increased prevalence of HIV infection in poorer families, families where the parents are separated, and disrupted extended families which face difficulties in providing child care or economic support to orphaned children. Rural-urban AIDS comparison The study suggests that AIDS mortality is lower in a more affluent urban community (3 AIDS deaths amongst 127 households, 2.4%), intermediate in an overcrowded low-income township and highest in a very low-income rural area adjacent to an urban area (17 AIDS deaths in 248 households, 6.8%). Whereas high rates of HIV infection have previously been noted in urban populations, little emphasis has been placed upon the high vulnerability to HIV infection of peri-urban rural communities. Such communities may have high rates of HIV infection and high orphan prevalence. Urban-to-rural relocation of families prior to parental death may be taking place. The study found evidence only of orphans being relocated from rural areas to urban areas after the death of the father, usually when the mother took her family to the city in search of work or remarriage. No questions were asked about the possibility of urbanto-rural relocation of the family taking place before the death of the parent, possibly after the father realized he was dying of AIDS. Families may be relocating from urban areas prior to parental death for cultural and economic reasons. Large numbers of young adults leave rural areas in search of work in urban centres. A survey of households in Zimunya found fewer than one-quarter of the men aged 20-34 years and one-third of the women aged 20-24 years than expected living in their rural home (Plan, 1991). People from rural areas, especially men, live in Mutare's overcrowded, poor-quality accommodation in Sakubva; the sex ratio in Sakubva is 120 males per 100 females, compared to 94

214 G. FOSTER et al.

and 90 in Dangamvura and Mutare District, respectively (CSO, 1992). High rates of migration of young adults to the city associated with a preponderance of young males and a lack of cultural and economic opportunities for females lead to increased vulnerability of young adults to HIV infection. Disproportionately high sex ratios in young adults have been noted in cities in several African countries with high rates of commercial sex and high or rapidly increasing HIV infection rates (Larson, 1989). Adults may later return to settle in rural areas or maintain a split family survival pattern, given Zimbabwe's efficient transport system. Among Zimbabwean rural and urban women 39% and 23%, respectively, reported the absence of their partner who was in employment or seeking employment elsewhere (USAID, 1993). These patterns may account for high AIDS death rates and orphan prevalence in peri-urban rural areas such as Zimunya. Extended Family Coping Mechanisms The extended family continues to remain the predominant orphan caring unit in Zimbabwe: throughout Africa, the extended family has maintained its place as the 'central human social unit'. It has been suggested that the socio-economic impact of AIDS may lead to a strengthening of the central role for the family and clan in the urban areas (Ankrah, 1993). In this study, there were no examples of orphaned children being looked after by someone who was not a close family relation; this indicates the strength of community coping mechanisms in response to increasing numbers of orphaned children. Decisions about the inheritance of children and property traditionally took place at a ceremony occurring one year after the burial of the deceased. The Shona custom of kugadza nhaka ensured that a widow was remarried into the family of the deceased husband. Wife inheritance is now an uncommon practice in Zimbabwe. The normal direction for orphaned children was for them to be distributed to the father's brothers or parents, even when the natural mother was still alive (Gelfand, 1973). This study found that most orphaned households (84%) were being looked after by a member of the maternal family; the paternal family was responsible for looking after orphaned children in only 16% of families. This practice of care for orphaned children by the mother or one of her blood relatives is different to that which is described traditionally. Informants observed that the father's side of the family may nowadays refuse to take the orphaned children; this was especially likely if the traditional practice of the paternal side of the family paying a bride price to the maternal family had not been fulfilled. More maternal aunts than paternal aunts were caring for orphaned children. The paternal aunt, the traditional provider of care to orphans, was found in only 6 out of 83 of orphan households and 4 out of 23 where the mother had died. Maternal aunts may already have a close caring relationship with the children at the time of parental death. Informants described cases of exploitation of orphans

ORPHAN PREVALENCE AND EXTENDED FAMILY CARE

215

taking place in homes where the caregiver was a paternal aunt, a practice which is traditionally well described (Gelfand, 1973). Where a grandmother was caring for orphaned children, this was more likely to be the maternal rather than the paternal grandmother: maternal grandmothers may be younger than paternal grandmothers and thus more capable of providing financial support for the orphaned children; they may also be more knowledgeable about appropriate childcare. However, children living with grandparents are potentially vulnerable since the grandparents themselves are being 'robbed' of their support mechanism, their own sons and daughters, as the AIDS epidemic spreads (Alden et al., 1991). It may be preferable for orphans to be cared for by a relative from the same generation as the parent rather than by a grandmother or sister who is from a different generation. Caregivers from the same generation are more likely to be educated, knowledgeable about childcare and more capable of financially supporting the orphan household. The deceased's relatives may succeed in taking the property of the late father, they may refuse to provide financial support for the widow and her children, so these may return to the maternal home. Thus, the maternal relatives may be deprived of the physical resources necessary to support orphaned children. In this respect, paternal orphans being cared for by their widowed mother may have more severe economic difficulty than maternal orphans who may benefit from the physical resources of the father's family. Extended family and community coping mechanisms are constantly being adapted to accommodate changes taking place within society. The changes which are taking place in orphan caring patterns illustrate these adaptations. The traditional Shona pattern of orphan inheritance by the paternal family is giving way to alternative patterns of care for orphaned children by the maternal side of the extended family. Sibling-Headed Households During the 1991 survey no cases of care being provided by an older sister were identified (Foster et al., 1992). In this study, in three cases the mother had died and care was being provided by an older sister aged 17-23 years; two of these older sisters had stopped attending school in order to care for younger orphans. In two further cases, care was being provided by a sister-in-law who had children of her own. The emergence of orphan households headed by older siblings may be an indication that the extended family system of caring for orphans is under stress. However, the sibling-headed household situation may be a temporary phenomenon during a transitional time in which the extended family makes structural changes in order to enable a relative to provide care for orphaned children (Alden et al., 1991). In one sibling-headed household of maternal orphans observed following the completion of fieldwork, the father subsequently returned to provide adult supervision to the children. Sibling-headed households may benefit

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from a period of intensive support and assistance during which time the extended family may be helped to develop appropriate mechanisms of support and supervision. Other members of the extended family or influential members of the community reinforce supportive behaviour towards orphaned children. Community members may make efforts to find suitable adults willing to look after unsupervised children. Further studies into the mechanisms by which communities exert social control need to be undertaken so that community and extended family support mechanisms for sibling-headed households can be reinforced. DISCRIMINATION AGAINST ORPHANED CHILDREN Community members gave consistent testimony to the occurrence of discrimination and stigmatization against orphaned children. In spite of this, caregivers gave impressive verbal testimony about their genuine concern for orphaned children. Measures of health, nutrition and education detected few differences between orphaned and non-orphaned children living in the same family and only limited differences between children in orphan and non-orphan families in the same community, despite considerable economic disparity. Several factors may help to explain this discrepancy. Firstly, extended family support mechanisms appear to be changing. It may be that community members describe traditional paternal orphan inheritance patterns which were often associated with exploitation. Their knowledge of such discrimination in the past leads them to assume that such behaviour is still common, despite the fact that orphaned children may nowadays be better cared for and less discriminated against by maternal relatives. Secondly, there may be a tendency for community members to generalize about the maltreatment of orphaned children, based on usual examples. Media articles which dramatize maltreatment of individual orphaned children may lead to stereotyping and undermine community coping mechanisms. However, some examples of discrimination may be the result of poverty: as one community member stated, most caregivers want to do as much for orphaned children as for their own children, but because of financial constraints, they give first preference to their own biological children. Cases of discrimination and stigmatization need to be interpreted in the light of the economic deprivation of a large number of orphan families. Further research identifying situations in which discrimination is most likely to occur needs to be undertaken. CONCLUSION Few systems for community surveillance of the size of the orphan population currently exist and few systems monitor the ability of families and communities to cope with the increasing burden of caring for orphans. Orphaned children at

ORPHAN PREVALENCE AND EXTENDED FAMILY CARE

217

risk may suffer social, economic and health consequences without statutory agencies responsible for alleviating such suffering being aware of their plight. There is need for initiatives to support orphans in their own communities. The basis for planning and mobilizing support by policymakers is orphan enumeration. Enumerations in the past may have underestimated the number of orphans in various communities due to limitations in survey design and implementation. What may appear a relatively simple task needs to be carried out systematically by well-trained enumerators who are able to probe beyond the obvious questions on household members and parental status. By counting all orphans and not simply those due to AIDS, enumerations may contribute to a reduction of prejudices against children orphaned by AIDS. Enumerations may also raise the awareness of local communities and lead to the establishment of community-based initiatives. However, orphan surveys may also undermine community support mechanisms if they raise the expectations of community members without any benefits being forthcoming (Hunter, 1990). Dynamic community-based methods of enumeration and monitoring utilizing community members may be one method of combining data collection with community support. The current and future impact of AIDS and the likelihood of households having orphans in them may be greatest in peri-urban rural communities such as Zimunya. This study indicates substantially higher rates of orphans in vulnerable communities such as low-income high-density and peri-urban rural areas compared to middle-income medium-density areas. Orphan support programmes may need to be established initially in high-risk communities. The fact that community coping mechanisms are changing does not imply that the extended family method of caring is about to break down. Extended family and community coping mechanisms are constantly being adapted to accommodate changes taking place within society. The care of orphaned children by maternal relatives represents an adaptation of a community-coping mechanism. Current media attention concerning the plight of orphans has concentrated upon those children in greatest need; child-headed households and elderly grandmothers caring for large numbers of orphans have received undue attention. This has tended to reinforce the notion that community coping mechanisms are fragile and about to disintegrate. This is despite the fact that even the poorest and most vulnerable people have set up resilient and ingenious coping mechanisms such as voluntary associations, burial associations, self-help groups, rotating credit and savings clubs (Salole, 1991). In this survey, all orphaned children identified were being cared for by a member of the extended family. The fact that the majority of orphaned children are being cared for within extended families, often under difficult circumstances, has been overlooked. The risk of overstatement of family breakdown is that alternative, non-traditional forms of care may be overstated. The ready availability of institutions to provide long-term care for orphaned children may encourage some relatives to relinquish their responsibility to care for orphaned children;

218 G. FOSTER et al.

their presence may also discourage statutory agencies from attempting family reconstruction or providing the meaningful support to orphaned children in extended families. This survey suggests that the care of orphans in the community often falls on individuals who have least resources. In spite of this, there was only limited evidence that orphaned children were suffering any more than non-orphan children. Emphasis needs to be placed upon supporting extended families in the community and preventing rupture of stressed community coping mechanisms by utilizing existing community-based organizations and encouraging the emergence of new methods of community-based support for children in need. Pilot interventions which support extended family caring systems need to be planned in collaboration with communities and their impact monitored and evaluated in terms of their effects upon orphaned children, other children in the community, families and the communities. A key aspect of such evaluations should be to identify and quantify strategic inputs which support community caring processes, since it is impossible for agencies comprehensively to meet the wide range of needs of all orphaned children in affected communities. A system for identifying vulnerable caregivers and the children under their care who are exposed to increased risks of morbidity or mortality and educational or social deprivation needs to be developed so that the families in greatest need of assistance may receive support. References Alden, J. S., Salole, G. M. and Williamson, J. (1991) Managing Uganda's Orphan Crisis. Technologies for Primary Health Care (PRITECH) Project. Ankrah, E. M. (1993) The impact of HIV/AIDS on the family and other significant relationships: the African clan revisited. AIDS Care, 5, pp. 5-22. Armstrong, S. (1993) The lost generation. World AIDS, March 1993. Bos, E. (1991) Projecting the Number of AIDS Orphans in One African Country (Population and Human Resources Department, World Bank). Chin, J. (1990) Current and Future Dimensions of the HIV/AIDS (WHO/GPA, July 1990).

Pandemic in Women and Children

CSO (Central Statistical Office) (1992) Census 1992 Zimbabwe Preliminary Report (Harare, Central Statistical Office). Dean, A. G., Dean, J. A., Burton, A. H. and Dicker, R. C. (1990) Epi Info, Version 5: a Word Processing, Database, and Statistics Program for Epidemiology on Microcomputers (Atlanta, GA, Centers for Disease Control). Dunn, A. (1992) The Social Consequences of HIV/AIDS Save the Children Fund).

in Uganda. Working paper number 2 (UK,

Foster, G., Chinemana, F. and Shakespeare, R. (1992) Orphans in Zimbabwe - a descriptive and enumerative study. Abstract PoD 5158, VHIth International Conference on AIDS, Amsterdam. Gelfand, M. (1973) The Genuine Shona (Gweru, Zimbabwe, Mambo Press).

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Gray, R. H., Smith, G. and Barss, P. (1989) The Use of Verbal Autopsy Methods to Determine Selected Causes of Death in Children. Occasional paper number 10 (Johns Hopkins University, School of Hygiene and Public Health Institute for International Programmes). Gregson, S., Garnett, G. P., Shakespeare, R., Foster, G. and Anderson, R. M. (1993) Mathematical model simulations and empirical estimates of the impact of HIV-1 on orphanhood in sub-Saharan Africa. Paper presented at AIDS prevention in developing countries: the role of demography and social science, Annecy, France, December 5-9. Gregson, S., Garnett, G. P. and Anderson, R. M. (1994) Assessing the potential impact of the HIV-1 epidemic on orphanhood and the demographic structure of populations in sub-Saharan Africa. Population Studies, 48, pp. 435-58. Hunter, S. (1990) Orphans as a window on the AIDS epidemic in Sub-Saharan Africa: initial results and implications of a study in Uganda. Special Science and Medicine, 31, pp. 681-690. Kamali, A., Kengeya-Kayondo, J. F., Malamba, S. S., Nunn, A. J., Seeley, J. A., Wagner, H. U. and Mulder, D. W. (1992) Orphans and HIV-1 infection in a rural cohort in S. W. Uganda. Abstract PoD 5159, Vlllth International Conference on AIDS, Amsterdam. Larson, A. (1989) Social context of HIV transmission in Africa: historical and cultural bases of East and Central Africa sex relations. Review of Infectious Diseases, 11, pp. 716-731. Mandishona, G. M. (1991) Zimbabwe Inter-Censal Demographic Survey (Harare, Central Statistical Office). Mann, J., Tarantola, D. and Netter, T. (1992) AIDS in the World, 1992 (Global AIDS Policy Coalition). Mataka, E. N. (1993) Children in developing countries - children in distress. Abstract WS-D26-6, IXth International Conference on AIDS, Berlin. MOH (Ministry of Health) (1993) HIV Sentinel Surveillance Report (Harare, National AIDS Coordination Programme, Ministry of Health). Mukoyogo, M. C. and Williams, G. (1991) AIDS Orphans, a Community Perspective from Tanzania, Strategies for Hope, 5 (Action Aid/AMREF/World in Need). Mulder, D., Kamali, A., Nakyinge, J., Nunn, A., Wagner, H. U. and Kengeya-Kayondo, J. (1994) HIV-1 associated mortality in a rural Ugandan cohort: results at two year follow-up. AIDS, 8, pp. 87-92. Naerland, V. (1993) AIDS - Learning to be more helpful (Uganda, Redd Barna). Nduatti, R. J., Mutta, J. W., Olenja, L., Muiva, E., Muthani, N. and Manguvu, F. (1993) Abstract WS-D26-4, IXth International Conference on AIDS, Berlin. Palloni, A. and Lee, Y. J. (1992) Some aspects of the social context of HIV and its effects on women, children and families. Population Bulletin of the United Nations, 33, pp. 64-87. Plan (1991) Child Survival Baseline Survey, Mutare District (Mutare, Plan International). Preble, E. (1990) Impact of HIV/AIDS on African children. Social Science and Medicine, 31, pp. 671-680. Salole, G. (1991) Building on people's strengths: the case for contextual child development. Paper presented to seminar in Maseru, Lesotho, 25-30 November (Bernard van Leer Fdn). Shakespeare, R. (1992) Orphans in Mamcaland, AIDS in the Nineties - Making a Difference (Zimbabwe AIDS Network). UKIMWI (1993) Trends in assisting future orphans' programmes. Abstract. WS-D26-1, IXth International Confenrence on AIDS, Berlin. UNICEF (1991) AIDS and Orphans in Africa. Report on a meeting held in Florence, Italy, June.

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USAID (1993) Zimbabwe AIDS Prevention and Control Programme Technical Analyses, January. WHO (1990) A draft discussion on the care and support of children of HIV infected parents, Geneva, WHO, 14 September. WHO (1992) Global Stategy for the Prevention and Control of AIDS: 1992, WHA45/29 (Geneva, WHO).

SEVENTEEN

The Orphan Problem: Experience of a Sub-Saharan Africa Rural Population in the AIDS Epidemic Anatoli Kamali, Janet A. Seeley, Andrew J. Nunn, Jane F. Kengeya-Kayondo, Anthony Ruberantwari and Daan W. Mulder

INTRODUCTION Whereas much HIV/AIDS research has been carried out in sub-Saharan Africa in the last decade, there is relatively little information on the social and demographic impact of the disease. Only recently have studies addressed the effects of HIV infection on mortality in the child-bearing age-group (Mulder et al., 1994; Ryder et al, 1994; Sewankambo et al, 1994; Nicoll et al, 1995). Orphanhood resulting from mortality in this age-group is clearly a major consequence of the HIV epidemic. Unless effective social interventions are implemented, many children will be adversely affected. Various surveys have attempted to enumerate orphan prevalence and, as Foster et al. (1995) summarize, the estimated rates vary considerably in different studies, from 6.0% in Bukoba district, N.W. Tanzania (children under 17 years) to 25.0% of children aged under 18 years in Rakai, Uganda. These variations may not be due entirely to real differences but to methodological differences including definitions and sample sizes. With the advanced HIV epidemic, especially in sub-Saharan Africa, there is a need to determine the extent of orphanhood specifically resulting from AIDS and at present the data available are only indirect estimates. Using seroprevalence data from 10 Central and East African countries, Preble (1990) has estimated that 3.1 to 5.5 million children aged 0-15 will become orphans by the year 2000 as a result of their mothers dying from AIDS. This is between 6% and 11% of all children in that age group. To assess the contribution of HIV infection to the prevalence of orphans necessitates knowing whether or not the cause of death of the parent(s) was related to HIV infection. This is not usually possible in developing countries as most deaths do not occur while under medical care and HIV serology prior to death is available in only a limited number of cases.

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The Medical Research Programme on AIDS in Uganda has been following a rural population cohort since 1989. The broad objectives of the programme are to study the transmission dynamics, the natural history and the socio-economic impact of HIV-1 infection. The study design presents an excellent opportunity to assess the magnitude of the problems of orphans and the extent to which HIV1 is contributing to it. STUDY AREA AND POPULATION The study area is a cluster of 15 villages in a rural sub-county of Masaka district, South-West Uganda. The inhabitants are mainly subsistence farmers who produce small-scale cash crops such as bananas and coffee. The cohort includes approximately 10,000 people of whom 52% are under the age of 15. Each family usually lives on one compound but, as part of the extended family system, it is not uncommon for children with both parents alive to live with other relatives such as the grandparents and assist with domestic work. The overall HIV-1 seroprevalence in this cohort is approximately 5% and among adults is 8%. METHODS The cohort was enrolled in 1989—90 through baseline demographic, socioeconomic and serological surveys which included all consenting residents. Data are available for three follow-up annual demographic and serological surveys. For all children aged less than 15 years, information on whether each parent was alive was collected during the demographic survey and from this the orphan status was obtained (orphans are defined as children aged less than 15 years who have lost one or both parents). Relationships between the members within each household were coded: children were linked to their mother, if present, otherwise to the father or other close relative. In addition to the annual survey a monthly birth and death registration was used to help improve completeness and accuracy of the data collected. Sera were tested for HIV-1 antibodies using two independent EIA systems and Western blot confirmation when the EIA results were discordant or weakly concordant (Nunn et al., 1993). In the analysis the HIV-1 status of the children and their relatives was linked. The HIV-1 test results were given to those requesting them through a counselling service provided by the programme (Seeley et al., 1991).

RESULTS Prevalence of Orphans In the baseline survey a total of 4,975 children aged less than 15 years were identified, of whom 518 (10.4%) were reported to have lost one or both parents (Table 17.1). Overall, loss of father alone (6.3%) was more common than loss of

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Table 17.1 Prevalence of orphans Age-group (years)

Lost

Total orphans

Total children

mother

father

both

No.

(%)

10-14

1,771 1,746 1,458

24 60 56

54 100 157

2 31 34

80 191 247

(4.5) (10.9) (16.9)

Total

4,975

140

311

67

518

(10.4)

0-4 5-9

mother alone (2.8%). A total of 67 (13%) of the orphans were reported to have lost both parents. This is slightly more than 1% of all children. HIV-1 Seroprevalence During the 3-year follow-up HIV-1 serology results were obtained for a total of 4,594 children (481 orphans and 4,113 non-orphans): this corresponds to 93% of orphans and 92% of non-orphans enrolled in the study. The HIV-1 prevalence in the age-group 0-4 years was 5.6% (4/71) among orphans and 0.9% (14/1,526) among non-orphans (P = 0.01). The corresponding rates among those aged 5-14 years were 1.0% and 0.4% (P = 0.1). The HIV-1 prevalence among surviving parents of orphans was 15.4% (16/104) and among parents of non-orphans 6.2% (81/1,298) (P < 0.001); median ages, as obtained from the demographic surveys, were 45 and 34 years, respectively. The rates among other persons (non-parents) related to orphans and non-orphans were 7% and 9% respectively. Orphans by HIV Status of Adult Deaths During the follow-up period a total of 83 deaths occurred among adults with children (previously non-orphans) enrolled in the study. As a consequence of these deaths 169 registered children became orphaned. Of these 42.6% were due to the death of an HIV-1-positive adult and 49.7% due to an HIV-1-negative death: for 7.7% of the orphans the HIV-status of the parent was unknown. Three-Year Mortality among HIV-Negative Children A total of 98 deaths occurred among HIV-1-negative children (7 among orphans and 91 among non-orphans). Mortality rates are shown in Table 17.2. In the 0-4 year age-group death rates were 22.1 (95% CI 0.4-43.8) among orphans and 15.6 (95% CI 11.6-19.2) per 1,000 person-years (py) in non-orphans. In those aged 5-14 years the rates were 2.7 (95% CI 0-5.7) and 2.8 (95% CI 1.6-4.0) respectively. There was no significant difference in mortality rates in both age-groups. Also shown are the overall age-standardized mortality rates in the two groups (8.9 and 11.2/1,000 py respectively): this difference, however, was not significant. Mortality analysis among persons related to and living with the children was limited to the parents (Table 17.3). The overall age-standardized mortality rate among surviving parents of orphans was 66.1 (27.1-105.4) compared to 17.9

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Table 17.2 Mortality rates among HIV-negative children by orphan status and age-group Age-group (years)

No.

Person-years

Deaths

Rate/ 1, 000 py

95% CI

Orphans 0-4 5-14

76 434

181 1,115

4 3

22.1 2.7

0.4-43.8 0-5.7

Total

510

1,296

7

5.4

1 .4-9.4

Age-standardized overall mortality rate = 8.9/1, 000 py[(II 2.3-1 5.5] Non-orphans

0-4 5-14

1,677 2,755

4,501 7,516

70 21

15.6 2.8

11.9-19.2 1 .6-4.0

Total

4,432

12,017

91

7.6

6.0-9.1

Age-standardized overall mortality rate= 14.1/1,000 py [Oil. 2-1 7.0]

(12.6-23.2) per 1,000 py among those of non-orphans. This was highly significant. The difference was more marked in those aged 45+ years with rates of 90.9 (27.9-153.9) and 6.6 (0.1-13.1) per 1,000 respectively. The difference observed in the 13—44 year age-group was not significant. School Attendance among Children by Orphanhood Status Information on school attendance was collected for children aged 7-14 years. Information was available for 265 orphans of whom 200 (75.5%) had attended school during the 6-month period preceding the interview. This compares to an attendance rate of 83.6% (1,510/1,807) among non-orphans (P = 0.3). Among orphans and non-orphans aged 7 and 8 years school attendance rates were similar. Among children aged 9 years or more orphans had a slightly lower rate than nonorphans.

DISCUSSION The number of orphans in communities hit by AIDS increases rapidly as the epidemic progresses (WHO, 1992) and the resulting burden might well overTable 17.3 Mortality rates among parents by age-group and orphan status Age-group (years)

No.

Surviving parents to orphans 13-44 70 45+ 34

Person-years

184 88

Deaths

3 8

Rate/ 1, 000 py

95% CI

16.3 90.9

2.1-33.8 17.9-153.0

40.4 272 11 Total 104 Age-standardized overall mortality rate = 66.3/1, 000 py[CI 27. 1-1 05.4] Parents to non-orphans 2,874 40 13.9 13-44 1,087 6.6 45+ 21 1 603 4

16.5-64.3

12.7 3,477 44 Total 1,298 Age-standardized overall mortality rate = 17.9/1, 000 py [01 2.6-23.2]

8.9-16.4

9.6-18.2 0.1-13.1

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225

stretch traditional support systems (Hunter, 1990; Seeley et al., 1993; Foster et al, 1995). In our study 10.4% of children under the age of 15 years were orphans and, as expected, the orphan rate increased with age from 4.5% in the age-group 0-4 to 16.9% in the age-group 10-14. Loss of father contributed to 60% of orphanhood, 27% by loss of mother and 13% both parents. These findings are similar to those obtained in the neighbouring district of Rakai where 12.8% of all those under 18 years were orphans (Dunn et al., 1990) and in Zimbabwe (Foster et al., 1995), where 12.8% of children aged less than 15 years were orphans. In the Zimbabwe survey, death of father contributed to 81.8% of orphans, 13.6% by loss of mother and 4.5% both parents. Thus, both studies showed that loss of father was more common than loss of mother. There are several possible explanations to the differential parental contribution to the orphan problem. First, women often leave their children and return to their natal home in cases of separation or divorce and as a result there may be a higher probability that the loss of a father is more reported than of a mother. Secondly, men often tend to remarry after death of their wives and the children left behind by the first wife are considered to have both parents alive. Estimates of orphan rates based on census data, prior to the AIDS epidemic, in Kenya (1969), Malawi (1977) and Uganda (1969) showed that overall orphan rates from one or both parents was 5.5%—7% of all children under the age of 15 (Ainsworth and Over, 1992). Based on these estimates, our findings suggest that orphanhood has increased by 50% or more during the past two decades, probably due to the AIDS epidemic. From the latest Ugandan national population and housing census (Analytical Report, 1991) the overall number of orphans (aged less than 15 years) was 920,590, corresponding to an orphan rate of 11.7%. It is, however, difficult to deduce from this the contribution of HIV infection in view of the fact that some of this number resulted from the civil wars of the early 1980s. Follow-up data from this study have shown that approximately 43% of children who become orphans have suffered the death of an HIV-l-positive parent. Since orphans were more likely to be HI V-l-positive than non-orphans, especially among those aged less than 5 years, and knowing that vertical transmission is the main mode of HI V-l transmission in children (KengeyaKayondo et al., 1995), the deceased parents and in particular the mothers were likely to have been HI V-l-positive. Further associations between orphanhood and HIV infection are shown by the higher prevalence rates (relative risk = 2.5) among the single surviving parents of orphans compared to parents of nonorphans. The HI V-l prevalence rates of 7%-9% among other persons (nonparents) related to both orphans and non-orphans are similar to background adult seroprevalence in the same population (Wagner et al., 1993). It has been shown that HI V-l infection has a negative impact on child survival (Valleroy et al, 1990). Our findings that orphans are more likely to be HIVpositive indicate that their expected mortality rate would be considerably higher

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than that of non-orphans in the same age-group. We thus excluded the HIVpositive children to see the effect of orphanhood alone on mortality. The results among those aged less than 5 years showed that orphans had a higher mortality rate than non-orphans, though this was not a significant difference. It is not possible to make definite conclusions as the number of deaths involved, particularly for the orphans, is small. Secondly, the proportion of non-orphans aged less than 5 years (37.8%) is not comparable to that among orphans (14.9%). The mortality rates among those aged 5—14 were similar in both groups. Mortality rates among the parents of children who are not orphans (12.7 per 1,000 py) obtained from this study are close to the overall adult mortality rates in the same population (Mulder et al., 1994). A highly significant difference in mortality between surviving parents of orphans and those of non-orphans, especially among those aged 45 years and above, constitutes a great risk to orphan survival. School attendance rates were initially similar among orphans and non-orphans, but at a later age orphans tended to have a slightly lower rate. Other studies (Muller and Abbas, 1990) have observed a negative relation between being orphaned and access to school education. We were not able to assess the reasons for not going to school but probable reasons are a lack of money for school fees and lack of guidance because of the parents' death.

BIASES AND LIMITATIONS We adopted a dual system of data collection, namely annual census and monthly birth and death registration, and we are confident that the data on which the analysis is based are valid. Children who lost both parents and were staying with other relatives may, however, have been 'labelled' as non-orphans for fear of stigmatization especially for those who became orphaned at a very young age. If so, this would have resulted in an underestimate of the orphan rate. This bias was probably minimal though, since all the demographic survey staff were from the study area and knew the residents well. Moreover, the repeat surveys made it possible to check the consistency of responses obtained during the subsequent surveys: no child initially recorded as an orphan had to be re-classified. Over 90% of orphans and non-orphans were enrolled and completion of follow-up was similar for both groups. It is therefore unlikely that this would invalidate our results. This analysis of possible biases suggests that, if anything, the orphan rate in this population might have been slightly underestimated. HIV-1 infection is contributing substantially (over 40%) to the orphan problem in this community and it is probable that in other areas in sub-Saharan Africa the effect is similar. We had expected that orphans were less likely to attend school than non-orphans as a result of decreased income to the family following the death of one or both parents, and were rather surprised that in our study this effect was so limited. There was no significant difference in mortality demonstrated between orphans and non-orphans, which indicates that the general care

THE ORPHAN PROBLEM 2227

of orphans is not substantially different from that of other children, suggesting that the family system was still coping with the increased burden. This coping capacity may, however, become overstretched if the epidemic evolves further. It would be wise not to wait until this happens and to introduce now appropriate community-based interventions to enhance the coping capacity.

REFERENCES Ainsworth, M. and Over, M. (1992) The Economic Impact of AIDS: Shocks, Responses and Outcomes (Technical Working Paper No. 1). The World Bank Africa Technical Department, Population, Health and Nutrition Division. Analytical Report (1991) Vol 11: The Republic of Uganda Population and Housing Census: Socio-Economic Characteristics (pp. 157-171). Dunn, A., Hunter, S., Nebong, C. and Ssekiwanuka, J. (1990) Enumeration and Needs Assessment of Orphans in Uganda: Final Survey Report-Draftft (Kampala, Uganda, Save The Children). Foster, G., Shakespeare, R., Chinemana, F., Jackson, H., Gregson, S., Marange, C. and Mashumba, S. (1995) Orphan prevalence and extended family care in a peri-urban community in Zimbabwe. AIDS Care, 7, pp. 3-17. Hunter, S. S. (1990) Orphans as a window on the AIDS epidemic in Sub-Saharan Africa: initial results and implications of a study in Uganda. Social Science and Medicine, 31, pp. 681-690. Kengeya-Kayondo, J. F., Malamba, S. S., Nunn, A. J., Seeley, J. A., Ssali, A. and Mulder, D. W. (1995) Human immunodeficiency virus (HIV-1) seropositivity among children in a rural population of south-west Uganda: probable routes of exposure. Annals of Tropical Paediatrics, 15, 115—120. Mulder, D. W., Nunn, A. J., Kamali, A., Nakiyingi, J., Wagner, H. and Kengeya-Kayondo, J. F. (1994) Two-year HIV-1-associated mortality in a Ugandan rural population. Lancet, 343, 1021-1023. Muller, O. and Abbas, N. (1990) The impact of AIDS mortality on children's education in Kampala, Uganda. AIDS Care, 2, 77-80. Nicholl, A., Timaeus, I., Kigadye, R. M., Walraven, G. and Killewo, J. (1995) The impact of HIV-1 infection on mortality in children under 5 years of age in sub-Saharan Africa: a demographic and epidemiologic analysis. AIDS, 8, 995-1005. Nunn, A. J., Biryahwaho, B., Downing, R. G., Ojwiya, A. and Mulder, D. W. (1993) Algorithms for detecting antibodies to HIV-1: results from a rural Ugandan population cohort. AIDS, 1, 1057-1061. Preble, E. A. (1990) Impact of HIV/AIDS on African children. Social Science Medicine, 31, 671-680. Ryder, R. W., Nsuami, M., Nsa, W. et al. (1994) Mortality in HIV-1 seropositive women, their spouses and their newly born children during 36 months of follow-up in Kinshasa, Zaire. AIDS, 8, 667-672. Seeley, J., Wagner, U., Mulemwa, J., Kengeya-Kayondo, J. F. and Mulder, D. W. (1991) The development of a community-based HIV/AIDS counselling service in a rural area in Uganda. AIDS Care, 3, 207-217. Seeley, J., Kajura, E., Bachengana, C., Okongo, M., Wagner, U. and Mulder, D. W. (1993) The extended family and support for people with AIDS in a rural population in south west Uganda: a safety net with holes? AIDS Care, 5, 117-122. Sewankambo, N. K., Wawer, M. J., Gray, R. H., Serwadda, D., Chuanjun, L., Stallings, R. Y., Musgrave, S. D. and Konde-Lule, J. (1994) Demographic impact of HIV infection in rural Rakai District, Uganda: results of a population-based cohort study. AIDS, 8, 1707-1713. Valleroy, L. A., Harris, J. R. and Way, P. O. (1990) The impact on child survival in the developing world. AIDS, 4, 667-672.

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Wagner, H. U., Kamali, A., Nunn, A. J., Kengeya-Kayondo, J. F. and Mulder, D. W. (1993) General and HIV-1 associated morbidity in a rural Ugandan community. AIDS, 7, 1461-1467. WHO (1992) Current and Future Dimensions of the HIV IAIDS Pandemic: A Capsule Summary (WHO/ GPA/RES/SF1/92.1).

EIGHTEEN

Who are the Primary Caretakers of Children Born to HIV-lnfected Mothers? Results from a Multistate Surveillance Project Barbara Schable, Theresa Diaz, Susan Y. Chu, M. Blake Caldwell, Lisa Conti, Ollie M. Alston, Frank Sorvillo, Patricia J. Checko, Pat Hermann, Arthur J. Davidson, Denise Boyd, S. Alan Fann, Mary Herr and Margaret Frederick

Most women with HIV have children (Chu and Diaz, 1993) and, as these mothers become increasingly incapacitated, they will require additional assistance with childcare and with planning for future placement of their children. In 1989, an estimated 6000 children were born to HIV-positive mothers (Gwinn et al., 1991), and projections are that between 82,000 and 112,000 children and adolescents born to HIV-infected women will be orphaned by the year 2000 (Caldwell et al., 1992a; Michaels and Levine, 1992). These surviving children will require legal guardianship, health, and social assistance services (Michaels and Levine, 1992). To best plan for how these services should be allocated, it is important to know who has the primary responsibility for children of HIV-infected mothers. To obtain a better understanding of who these primary caretakers are, we interviewed women with HIV or AIDS as part of a multistate surveillance project extending routine HIV/AIDS surveillance. METHODS Ten state and local health departments are collaborating with the Centers for Disease Control and Prevention (CDC) in the Supplement to HIV/AIDS Surveillance project. Through interviews with women reported with HIV or AIDS who are at least 18 years of age, this ongoing project provides information to supplement that routinely collected through national HIV and AIDS surveillance. The methods of this project have been previously described (Diaz et al., 1994). Briefly, two procedures are used to locate women for interviews. In Arizona, Delaware, Los Angeles, South Carolina, and Washington, all women recently reported with AIDS to the health department are contacted, and in the

2300

B. SCHABLE et at.

five other sites (Atlanta/Macon, Connecticut, Denver, Detroit, and Florida), all women reported with AIDS receiving care at selected medical facilities are asked to participate in the interview when they arrive for an outpatient clinic or physician appointment, or are admitted to a hospital. In the four participating sites that have HIV reporting (Arizona, Denver, Detroit, and South Carolina), women with HIV infection who have not developed AIDS are also interviewed using the above procedures. At each site, women who agree to be interviewed are administered a 30-minute standardized questionnaire in English or Spanish by trained interviewers from the health department. Each health department has developed procedures to ensure patient confidentiality, and projects were approved by local human subject review boards. Nearly all interviews are administered in person; 3% were conducted by telephone. As part of the interview, when appropriate, women are referred for medical care, counseling, or social services. Data without names are transmitted from health departments to CDC. We analyzed data from questionnaires administered from June 1 1990 through June 18 1993. Only women who have given birth to children since 1977 were included in this analysis. Information obtained during the interview was used for all analyses except mode of HIV exposure and age, which were obtained from the AIDS or HIV case report form. A family unit was defined as the biological mother and her children. To determine the child's primary caretaker, mothers were asked the following question: Who cares for this child? Possible responses included mother alone, mother and father, father alone, grandparents, other family, foster/adoptive family, or other (respite home or other residential facility, hospital, unknown, and self (the child)). In addition, mothers were asked whether they knew about childcare assistance services in their local communities and whether they had contacted or used these services in the past. Differences in the proportional distribution of the primary caretaker were examined by the following variables: the mother's mode of HIV exposure, illness status, race/ethnicity, living situation, marital status, household income in the year preceding interview, education, and the illness status of the child. We also examined these associations separately by project site for sites with 40 or more family units; because these findings rarely differed substantially, overall findings are presented here and the few notable differences are described in the results.

RESULTS Description of Respondents Of the 1232 women with HIV or AIDS who were eligible for interviews between June 1 1990 and June 18 1993, 922 (75%) completed interviews, 195 (16%) refused to be interviewed, and 115 (9%) could not be located. Eight women were excluded because their pregnancy status was unknown. Women who were

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interviewed were more likely (P < 0.05) than women who were not interviewed to have been exposed to HIV through heterosexual contact (41% versus 31%, respectively) and to be black/African American (60% versus 46%). Of the 914 women with known pregnancy status who completed interviews, 541 (59%) first became pregnant after 1977. The race/ethnicity and age of women differed by pregnancy status. Women who had been pregnant were less likely than women who had not been pregnant to be white (20% versus 26%, respectively) or black/African American (58% versus 64%) but more likely to be Hispanic/Latina (20% versus 10%). Women who had been pregnant were also more likely to be younger (median age 32 years) than women who had not been pregnant (median age 40 years). The remainder of this report will focus only on those women who had been pregnant since 1977. Characteristics of Women Of the 541 women who had been pregnant, 314 (58%) had AIDS and 227 (42%) were infected with HIV but had not yet developed AIDS. Most women were infected with HIV through heterosexual contact (43%) or injecting drug use (37%). Fifty-eight percent of the women were black/African American, 20% were white, and 20% were Hispanic/Latina. The majority of the women lived with family or a partner (79%), were unmarried (85%), were currently unemployed (88%), had not completed 12 years of school (51%), and had an annual household income less than $10,000 (72%). Of these 541 women, 478 (88%) had living children. The number of children per mother ranged from one to seven; 244 (51%) mothers had one child, 143 (30%) had two children, and 91 (19%) had three or more children. The children ranged in age from less than 1 month to 15 years. Thirty-four percent of the children were less than 5 years of age. Primary Provider of Child Care Of the 478 family units (mother and her children), 234 (49%) consisted of two or more children (Table 18.1). Overall, and regardless of family size, the most common primary caretakers for all children within a family unit were the mother alone (46%), grandparent(s) (16%), and mother and father jointly (15%). Less than 10% of all children were cared for by others. As the number of children increased, fewer mothers were the primary caretakers, although this difference was only significant (P < 0.05) for mothers with two children compared to mothers with one child. Among mothers with more than one child, in about one in five families, the children were split between primary caretakers ('multiple caretakers'); the most frequent multiple caretaker situation was the mother and grandparent(s). Who the primary caretaker was differed by the characteristics of the mother. Although mothers alone were almost always the most common primary caretakers for their children, women with HIV but not AIDS were significantly (P < 0.05) more likely than women with AIDS to be the primary

2322 B. SCHABLE et al.

caretaker of their children (Table 18.2). Women who were exposed to HIV through injecting drug use were significantly (P < 0.05) less likely (than women in other exposure categories) to be the primary caretaker of their children. Married women were the only group where both the mother and father were the most common primary caretakers. More than 20% of all children were cared for by grandparent(s) when the mother had AIDS; injected drugs; was black/African American; was never married; lived alone, in a shelter, or with friends; or had an annual household income less than $10,000. Among all primary caretakers listed, the father alone was rarely the primary caretaker; however, a slightly higher proportion of all children (>5%) were cared for by the father alone when the mother used injection drugs, was separated or divorced, or was living with friends. Foster/adoptive care was uncommon, although this proportion varied by both geographic location (from 23% in Colorado to <1% in Florida) and mother's mode of transmission (from 6% of children born to mothers who injected drugs to 0% born to transfusion recipients). Among Hispanic/Latina women and women living alone or in a shelter, more than 20% of the children were split among multiple caretakers; most often the mother and grandparents or other family members. Who cared for the children also varied by the HIV and illness status of the child. Of the 957 children born since 1977 to the 541 mothers who completed interviews, 891 (93%) were alive on the date of the interview. Those most likely to be cared for by their mother alone were children ill with HIV infection (Table 18.3). A slightly higher proportion of HIV-negative children were cared for by their grandparent(s) than were HIV-positive children, whereas a higher proportion of HIV-positive children were in foster care than were HIV-negative children. Of the 478 mothers interviewed who had at least one living child, 142 (30%) knew about childcare assistance services in their communities. Overall, only 37 (8%) mothers had contacted or used these services.

DISCUSSION Among women with HIV or AIDS surveyed, more than half have children 16 years of age or younger. Most of the HIV-infected mothers we surveyed are of lower socioeconomic status and rely on public resources for their health care and financial support (Chu and Diaz, 1993). Besides needing to negotiate care for their own illness, these women are also the primary providers of economic and social support for their children, some of whom may also be ill. In fact, in this analysis, over half of the children ill with HIV infection were cared for by the mother alone. Moreover, in nearly half of the families, the mother had multiple young children to care for. Our findings are similar to those of a study conducted by Drucker et al. (1991), of HIV-infected women who were injection drug users in New York City. This study found that a majority of children were cared for by their mothers,

Table 18.1 Primary Caretaker by Number of Children per HIV-lnfected Mother Number of Biological Maternal Family Units

Mother and Father {%)

Father /0/\ l/b)

Grandparents)

lo/\ \/o]

(/o)

Other Family (%)

Foster/Adoptive Family (%)

Other (%)

Multiple (>2) Caretakers (%)

3+

244 143 91

51 39 45

15 15 18

4 3 2

18 18 8

8 4 1

2 1 3

2 1 0

N/A 19 23

Total

478

46

15

3

16

5

2

1

10

Number of Children

1 2

Proportion of Family Units in Which All of the Children Were Primarily Cared for by: Mother

IO/\

Table 18.2 Primary Caretaker by Characteristics of HlV-lnfected Mother Proportion of Family Units in Which All of the Children Were Primarily Cared for by:

Number of Biological Maternal Family Units

Mother (%)

Mother and Father (%)

Father

Grandparent(s)

IO/\

/0/\

Mother's HIV status AIDS HIV

273 204

39 56

17 14

4 3

Exposure group Injecting drug use Heterosexual contact Undetermined

174 204 85

32 55 56

13 16 15

Race/ethnicity White Black/ African American Hispanic/Latino

79

285 105

41 48 49

Marital status Never married Married Separated/divorced Widowed Common law/live with partner

217 74 102 31 54

Current living situation Alone or shelter Partner or family Friends

Other Family {%)

Foster/Adoptive Family (%)

Other

Multiple (>2) Caretakers

(%)

(%)

22 7

7 3

2 3

2 0

7 14

7 2 0

24 14 7

7 4 5

3 2 1

1 2 1

14 5 14

24 12 16

4 3 2

10 22 5

8 5 5

5 2 0

0 1 3

9 7 21

52 20 52 84 28

6 58 9 3 11

1 3 10 0 2

22 5 15 3 15

7 3 4 3 6

3 1 3 0 2

1 0 2 0 6

8 10 6 7 31

66 381 26

36 49 35

8 18 4

5 3 8

26 14 23

9 5 0

6 2 4

0 1 8

11 9 9

Annual household income <$10000 >$10000

348 98

46 49

11 32

3 3

20 5

6 4

2 0

1 0

10 7

Education <1 2 years of schooling >1 2 years of schooling

245 233

47 46

10 21

2 5

16 16

5 5

3 1

2 0

15 6

Total

478

46

15

3

16

5

2

1

10

Characteristics of Mother

(/o)

(/o)

Table 18.3 Primary Provider of Care by Serologic and Illness Status of Children Born to HIV-infected Women

Characteristic HIV status of child Negative* Positive* III with HIV Not ill with HIV Unknown/not tested

Proportion of Children Whose Primary Caretaker is

Number of Children

Mother i°/\ \/o)

Mother and Father (%)

Father

Grandparents) t°/\ V°l

Other Family (%)

Foster/ Adoptive Family (%)

Other

9

343 87 41 39 461

53 55 61 56 44

22 22 20 28 15

3 0 0 0 5

14 6 7 3 19

5 3 0 8 7

2 9 5 6 4

2 5 7 0 6

* Includes 10 indeterminate test results. * Seven HIV-positive children had unknown illness status.

(%)

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and only 4% were in foster care. Our findings are in marked contrast to the findings of Caldwell et al. (1992b), who reported that 40% of children whose mothers were infected by injecting drugs were in foster care. Two factors may explain this difference. Increasingly, child protective service agencies attempt to work within the existing family unit rather than place the child in foster care. The report by Caldwell et al. presented data collected from January 1989 to December 31 1990; currently, they report a lower proportion of children born to injecting drug users in foster care (33%) (CDC, unpublished data). In addition, because women who had died (9%) or were very ill (7%) could not be interviewed, the women in our survey are probably healthier than all HIVinfected mothers. The findings of our study and Caldwell et al. suggest that when HIV-infected mothers are relatively healthy and able, they primarily care for their own children. As they become very ill or die, their children will increasingly be placed in foster care (Nicholas and Abrams, 1992). We found that, under some circumstances, persons other than the biological mother, usually the grandparent(s), care for these children. An earlier study found that when mothers die of AIDS-related diseases, elderly grandmothers, who themselves may be in ill health, frequently become the guardians of their grandchildren (Cohen and Nehring, 1994). Grandparents and fathers, as well as other caretakers, may require special support services for these children to assist with childcare, to help these children deal with their mothers' illness and probable death, and to provide assistance to access appropriate health care services for children who are themselves HIV-infected. Further information or the social circumstances and social support of grandparents and fathers who care for children of HIV-infected mothers would help social service agencies to provide these services more effectively. The principal finding of our study is that most HIV-infected mothers have primary, often sole, responsibility for their children. This finding emphasizes the need for support services for these women. That only a third of all mothers knew about or had used childcare assistance services may be because either services are not widely available in the area or women were not made aware of their availability. Information about low-cost, available childcare should be distributed widely to persons who provide health care and other services to HIV-infected women. These providers, in turn, should refer mothers to these services. In addition to lack of information, mothers may be reluctant to seek childcare assistance services for fear of losing their children, the same reason some mothers are reluctant to be tested for HIV infection (Navarro, 1993). Health care, social service, and childcare assistance service providers need to address this fear and encourage mothers to seek and use these services. Moreover, HIV-infected mothers urgently need community-level assistance with permanent placement of their children, either with family members or through adoption outside the family. The Families' and Childrens' AIDS Network in Chicago, IL, and the Child Welfare Administration's Early Permanency Planning Project in New York City are two examples of innovative local programs that assist HIV-affected

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families' permanency planning needs (Michaels and Levine, 1993; Robinson et al., 1993). Both of these programs aim to identify foster parents (with the ultimate goal of adoption) for HIV-affected children who survive their mother's death. In addition, while the mother is still alive, these programs encourage close relationships among the prospective parents, the birth parents, and the children. Programs such as these will help ease the trauma that the children of HIVinfected women will face with the loss of their mothers.

REFERENCES Caldwell, M. B., Fleming, P. L. and Oxtoby, M. J. (1992a) Estimated number of AIDS orphans in the United States. Pediatrics, 90, p. 482. Caldwell, M. B., Mascola, L., Smith, W. et al. (1992b) Biologic, foster, and adoptive parents: care givers of children exposed perinatally to human immunodecifiency virus in the United States. Pediatrics, 90, pp. 603-607. Chu, S. Y. and Diaz, T. (1993) Living situation of women with AIDS. Journal of Acquired Immune Deficiency Syndrome, 6, pp. 431—432. Cohen, F. L. and Nehring, W. M. (1994) Foster care of HIV-positive children in the United States. Public Health Reports, 109, pp. 60-67. Diaz, T., Chu, S. Y., Conti, L. et al. (1994) Health insurance coverage among persons with AIDS: results from a multistate surveillance project. American Journal of Public Health, 84 (6), pp. 1015—1018. Drucker, E., Rothschild, J., Poust, B. et al. (1991) IV drug users with AIDS in New York City: a study of dependent children, housing and drug addiction treatment, in: N. Mackenzie (ed.), The AIDS Reader (New York, Penguin), pp. 144-160. Gwinn, M., Pappaioanou, M., George, J. R. et al. (1991) Prevalence of HIV infection in childbearing women in the United States: surveillance using newborn blood samples. Journal of the American Medical Association, 265, pp. 1704-1708. Michaels, D. and Levine, C. (1992) Estimates of the number of motherless youth orphaned by AIDS in the United States. Journal of the American Medical Association, 268, pp. 3456—3461. Michaels, D. and Levine, C. (1993) Social catastrophe: orphaned by AIDS. Reply. Journal of the American Medical Association, 269, p. 1942. Navarro, M. (1993) Testing newborns for AIDS virus raises issue of mothers' privacy. New York Times, August 7, pp. 1 and 17. Nicholas, S. W. and Abrams, E. J. (1992) The 'silent' legacy of AIDS. Children who survive their parents and sib lings. Journal of the American Medical Association, 268, pp. 3478-3479. Robinson, R. P., Monk, E., Coon, L. et al. (1993) Social catastrophe: orphaned by AIDS. Letter. Journal of the American Medical Association, 269, p. 1942.

NINETEEN

'We Just Want to be a Normal Family Paediatric HIV/AIDS Services at an Inner-London Teaching Hospital Geraldine Barrett and Christina R. Victor

INTRODUCTION In Britain there are increasing numbers of women infected with HIV. Vertical transmission from mother to child is the major route by which children acquire HIV infection (European Collaborative Study (ECS), 1992; Gibb and Newell, 1992), although there is an older group of children (mainly haemophiliacs) who acquired the infection from contaminated blood or blood products prior to 1985. Currently in Britain, there are 17,003 men, 2,468 women, and 435 children known to be HIV-positive, of whom 6,827 men, 514 women, and 114 children have developed AIDS (Public Health Laboratory Service, March 1993). Knowledge of paediatric HIV and AIDS is in its early stages, and diagnosis of HIV in infants is problematic. Children born to HIV-positive mothers have no manifestations of infection at birth. However, all will test positive because of maternal antibodies acquired via the placenta (Newell, 1992). Maternal antibodies can persist for as long as 18 months, thus making firm diagnosis difficult until after this time. However, a firm diagnosis can be made before 18 months using measurement of viral antigens and/or enzymatic activity, virus culture, or polymerase chain reaction test, but these tests are costly, time-consuming, of varying reliability and sensitivity, and not as yet routinely available (Gibb, 1991; Newell, 1991). There is a paucity of information about the natural history of paediatric HIV infection. When paediatric HIV infection was first identified, most affected children were critically ill and few survived until school age (Urbano and Von Windeguth, 1992). With improved healthcare and new treatment regimes, children infected with HIV are now living longer (Urbano and Von Windeguth, 1992). A child's prognosis is influenced by the age at which they are diagnosed HIV-positive, and the symptoms with which they present. As more children are

PAEDIATRIC HIV/AIDS SERVICES

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infected with HIV, a clinical picture is emerging of the likely progression of the disease (Tovo et #/., 1992). Approximately one-third of children with vertically acquired HIV infection develop AIDS or HIV-related disease in the first year of life (ECS, 1991; Gibb and Newell, 1992). The remaining two-thirds of HIVinfected children tend to experience a slower, more variable course of the disease (ECS, 1991; Gibb, 1991; Gibb and Newell, 1992) although nearly all show some manifestations of infection (clinical or immunological) by 12 months of age (ECS, 1991). Several factors associated with paediatric HIV have implications for the provision of healthcare. First, there is huge clinical uncertainty regarding the condition. Gibb (1992) recommends that until there is more familiarity with the management of the often complex medical problems associated with paediatric HIV, some centralization (i.e. specialized hospital units) is necessary. This is in contrast to adult HIV services where there is a clear trend to develop community services and create a new balance between community and hospital-based services combined with the growth of primary care in caring for HIV. Secondly, families are facing a number of problems with HIV which would not exist with other conditions. For instance, the nature of the disease means that, as well as the child, at least one other member of the family is coping with a potentially terminal disease. The implications of this are that substantial healthcare services need to be provided to a family, not just an individual. Thirdly, families are often isolated, and unlike the situation with other chronic diseases, may lack the care and support from extended family, friends and the community (Gibb, 1992). This paper describes the results of a preliminary survey undertaken with families of children with HIV/AIDS. Particular attention is paid to the role of hospital-based services for children with HIV/AIDS and considers the relationship between paediatric and adult-based services. The study hospital is already a major centre for the treatment of adult HIV and has become its regional speciality centre for the diagnosis and care of children with HIV. There are approximately 100 HIV-positive (including indeterminate) children on the current paediatric caseload. Most of these children's parents are also infected with HIV, and many attend the hospital's adult HIV services. Paediatric HIV services at the study hospital are provided by a specialist HIV team. The team comprises a Professor of Paediatrics, a Consultant Paediatrician, a Lecturer in Infectious Disease, two specialist Health Visitors, a Clinical Psychologist, a Social Worker, and a Team Co-ordinator. The team provides inpatient and outpatient care to all the children on their caseload, and can also provide shared care with local District General Hospitals and paediatricians where desired. The team aims to support the child, family and carers. METHOD For reasons of patient confidentiality, the sample was chosen and families initially approached by the paediatric department. To elicit 10 interviews, 25 children

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were chosen by the paediatric HIV team from their total caseload of approximately 97 HIV-positive and indeterminant children. Each member of the team chose vertical transmission patients from their caseload, and only excluded people whom they knew would not be willing to talk to a researcher. Although it is not possible to verify the statistical representativeness of the sample, it was felt by the team that the patients were a fair indication of the team's workload. Once the sample was chosen, a letter was sent to the parents asking them if they would agree to talk to a researcher about their child's, and their own, use of services at the hospital. It was stressed to families that participation in the study was voluntary, and that if they had any worries or anxieties about the study they did not have to take part. Ten parents volunteered to be interviewed using a semi-structured questionnaire which lasted for one to one and a half hours. The topics covered included: the age and sex of the child; how the child was referred to services at the study hospital; the child's use of, and family's satisfaction with, the paediatric clinic; the child's use of other services; the family's registration with a GP, and use of GP services; parents' referral to services at the hospital, and parents' use of services; the co-ordination of parents' and children's services, and any problems encountered and suggestions for improvement; inpatient episodes of the family; possible problems with future inpatient episodes; and socio-economic details of the family. The presentation of results has been anonymized in order to protect the identities of respondents and their families. Ethical approval was given for this study.

RESULTS The results of the study are described below. Sample Characteristics Of the sample of 10 children, four were boys. The ages of children ranged from 5 months to 11 years. All children had contracted HIV via vertical transmission from their mothers, six of whom were from sub-Saharan Africa. Of the ten children, six lived with both parents and three had both parents with HIV. Use of the Study Hospital's Paediatric Services CHILDREN'S REFERRAL PATTERNS TO THE DEPARTMENT

Families were asked how their child was referred to the paediatric department of the study hospital, in order to establish how the child came to be identified as HIV-positive. In seven of the 10 families, the child becoming ill was the first indication to the family of a possible HIV-positive status. These children were treated by GPs

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and other hospitals for a number of complaints before being tested for HIV. A typical example: The child was continually ill from a very young age. Over a 2-year period the child saw the GP many times and had a number of investigations at XXXXX, none of which showed anything. Eventually when the child was an inpatient, XXXXX suggested testing for HIV. The child was positive. The child was then referred to the study hospital.

Once diagnosed the children were usually quickly transferred to the study hospital. Only three children were referred to the paediatric department after being born at the study hospital. Two of the three mothers were diagnosed as HIV-positive before becoming pregnant. OUTPATIENT CLINIC APPOINTMENTS

Parents were asked a number of questions about their use of the paediatric outpatient clinic and how they organized family life to accommodate these appointments. The frequency of the child's attendance at the paediatric outpatient clinic varied from bi-weekly to 6-monthly according to child's health status, but parents reported that the child would be seen at the clinic sooner if there was any concern. Parents felt able to telephone the clinic with any queries or problems. All parents were happy with frequency of their child's visits to outpatients, and were happy to defer to the judgement of the Paediatric HIV team about how often the child needed to be seen: We have total trust and confidence in the team. They haven't done us wrong yet. We see [Consultant] and [Specialist Health Visitor] on every visit [once every 4 months], and XXXXX sees [psychologist] once a year, but otherwise we just knock on everyone's doors to say hello.

All parents gave priority to the child's outpatient appointments above any other family commitments. Most families made a number of, often complex, arrangements in order to attend: Mother normally takes child to the clinic as she doesn't work. Sometimes paternal Grandmother also accompanies mum. Father accompanies mum approximately every four visits just to keep in with what is going on. He doesn't take time off work, but arranges any time that is owed him to coincide with the appointment. There are two older children, and so far appointments are normally when they are at school. If there is a problem (rarely happened so far) the Grandmother can help out. Both parents work full time. Their employers don't know the diagnoses, so they take a day's annual leave to come up to the clinic. This means all their leave is used up going to the clinic. They no longer have leave for holidays,

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and soon there may not even be enough leave for clinic appointments. There are two other children in the family who are at school in the day. The parents take turns in finishing work early to collect the girls from school. At other times, when parents have to go to appointments, the girls go to a childminder.

SATISFACTION WITH THE OUTPATIENT CLINIC Parents were asked about their overall satisfaction of the quality of care provided to their child by the clinic. All the parents were very pleased with the quality of care provided for their child by the clinic, and most parents were emphatic in their praise: extremely satisfied; profoundly impressed; really happy; excellent; couldn't be more helpful; very satisfied - brilliant. One parent listed the ways in which he was impressed by the service offered in the clinic, the points of which are indicative of what most of the parents felt: (a) the appearance of unlimited time by the clinicians and the department as a whole; (b) the way they (the family) felt they could ask any questions; (c) the patience of all the staff; (d) the caring attitude of all the staff; (e) the knowledge of HIV/AIDS that the staff had - family felt the child was receiving the best care available in the country. INPATIENT EPISODES Parents were asked about any inpatient episodes their child had had in the last year. Seven of the ten children had been admitted to hospital in the last year, often having prolonged or repeated admissions. The continuity of doctors was appreciated by all parents: The children run up to the doctors and hug them. This means that when the children are admitted to hospital they are very happy to come in. If they were seeing different doctors all the time the same level of rapport and trust wouldn't be built up. This would make admitting a child to hospital a very different matter.

All seven families were very happy with the doctors and the medical care given to their child. They all felt able to ask the clinical staff questions, and all were confident that they knew what was happening to their child. However, given the frequent and often prolonged nature of inpatient stays, there were concerns about parents' overnight facilities. Complaints included: that facilities were not available for all parents to stay overnight; that the accommodation was 'lousy, awful, depressing'; the beds were uncomfortable (i.e. camp beds, no pillows); there were

PAEDIATRIC HIV/AIDS SERVICES

2243

no wardrobes or hooks to hang up clothes and no shelf in the bathroom; and there were no facilities to make tea or coffee. In praising inpatient and outpatient services at the study hospital, most parents had the yardstick of their child's treatment and care in other hospitals. They contrasted their experiences of other hospitals with their experiences of the study hospital: Parents said the difference between [the study hospital] and XXXXX was huge. When the child was admitted to XXXXX and the diagnosis became known, the parents said they were made to feel very uncomfortable, and some of the nurses refused to treat the child. Parents are very glad that they are made to feel comfortable at [the study hospital], and they aren't made to feel different. We appreciate them [the Paediatric Team] - especially after XXXXX. Parent says it would be pointless to admit child to XXXXX again because they don't have the expertise to deal with Paediatric HIV/AIDS. COMMUNITY SERVICE USE

There was little use of community services. Nine of the children and their families were registered with GPs. The one unregistered family have found a GP who is sympathetic to the needs of HIV-positive people and is willing to take them, but the local FHSA has prevented them from registering with the GP because they are outside the practice's catchment area. The FHSA remains inflexible on the issue and the family remain unregistered. The mother explained her reasons for insisting on the particular GP. We're not prepared to go to someone who will treat us as outcasts.

Three of the nine families who were registered encountered specific problems of rejection from their GPs after their diagnoses became known, e.g.: We were cold-shouldered. The GP made it clear to us that he wasn't happy treating HIV-positive people.

The GP of one family refused to make emergency house-calls at night when the child was ill, even though he knew the diagnosis. Eventually when the father complained to the GP about the service, saying that he would complain to the FHSA, the GP removed the family from his list. Two of the three families who experienced problems with their GPs reregistered with new, more sympathetic, GPs. Currently, eight families are happy with their GPs. Most families liked having their GP as a first point of call, but, despite this, most felt the GP's contribution to care was limited:

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G. BARRETT AND C. R. VICTOR

We prefer to use the hospital rather than mess around with a GP. An unnecessary bit in the middle which we don't bother with anymore. GP is not so clued up. Fine for a quick check-up. He's a bit irrelevant.

Similarly, one family who like their GP, praised her and said they were confident in her, then added, But we still bring the child to the hospital anyway,

(for the same complaint for which they consulted the GP). Two parents said the only thing their GP was useful for was a repeat prescription. Parents were also asked about their use of voluntary support groups. Use varied among the parents, but no parent was an extensive user of services, e.g. one parent had a Buddy; one parent had a weekly visit from someone from Grandmas; one parent had received a 'one-off grant from Positively Women; two parents used the legal and advice services of the Terrence Higgins Trust; and two parents used the services at the London Lighthouse. Reasons for not using the voluntary groups tended to be for either practical reasons (i.e. journey, time, money, childcare) or that there was no perceived need. One parent explained that the family was not interested in using these groups because, . . . it hasn't taken over our lives. We just want to be a normal family.

One parent also added that she felt that some of the groups were just for gay men and not for women, therefore she did not feel any desire to make use of them. Another parent just described some groups as 'a waste of time'.

CO-ORDINATION OF PAEDIATRIC AND ADULT HIV SERVICES Parents were asked how satisfied they were with the co-ordination of their family's paediatric and adult outpatient services, and how, ideally, they would like those services to be organized. Also, parents were asked about the possible problems future inpatient episodes would cause where more than one member of the family was admitted to hospital at the same time. Co-ordination of Current Outpatient Services Parents were unanimous in their views that paediatric and adult services were unco-ordinated. There were three main reasons. First, parents found attending multiple sites within the study hospital problematic:

PAEDIATRIC HIV/AIDS SERVICES

245

We're exhausted by the time we get from one department to another. Sometimes we have to rush the appointment we are in to get over to the other side of [the study hospital] for the next appointment.

Secondly, separate visits to the study hospital for different members of the family caused problems: Parent and child never have appointments on the same day. Parent's appointments are always on a Tuesday or a Thursday, whereas the child's appointments can be any day of the week.

Mother, father, and child all have appointments on different days. Thirdly, the adult facilities were felt to be unsuitable for children: The smoking, posters, literature in waiting area is not suitable for children. Mother feels her child has become 'worldlywise' before her time. Also, seeing the type of people in the clinic (i.e. gay men, with AIDS, very ill) is frightening to the child, showing her how the disease progresses.

How Parents Would Like Outpatient Services to be Organized Seven of the parents said they wanted a 'family clinic' or described that they wanted the adult and paediatric services to be together. The reasons given by two parents for combined services are representative of the views of the other parents. One mother said she would like a specific HIV/ AIDS family clinic: (a) because of the fear of infection from other children coming to a general clinic; (b) because the needs of the HIV-positive children and families are very different to those with other diseases (i.e. both parent and child ill), and feels there is a need for the family to be seen in the same place. One father said he would like services to be co-ordinated for the following reasons: (a) economic - cheaper for the family because of making less trips to the hospital; (b) convenience - arrangements for childcare, etc., would be much easier to make. It would take up less time; (c) family - it is something they go through as a family, and the happenings to different members affect them all. Father said that the study hospital's paediatric HIV team is particularly good at understanding the relationships within the family; (d) if members of the family were to become ill and needed to be admitted to

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hospital, they would be in the same place, which would make all other arrangements easier. Parents also made a number of suggestions about what they would like the family clinic to include: to be a purpose-built facility (with possible inpatient facilities); nursery (or nursery nurse, and more toys); canteen/vending machine; facilities for uninfected family members; 'grandma'-type volunteers (not a professional, just someone to listen and be around); and women's services, e.g. gynaecology. It is interesting that families did not report, when considering their ideal pattern of care, that they wanted more shared care or a greater involvement of primary care. The model of service delivery advanced was very hospital-centred. Future Inpatient Episodes Most families had experienced at least one member of the family being in hospital at some point, and any inpatient episode required a reorganization of family life. Domestic arrangements (especially the housekeeping functions) would be upset whoever became ill, but in most families the mother becoming ill caused more problems than the father becoming ill. This was a particularly acute problem in African families where it was reported that the father had often had little involvement in domestic chores and the practical aspects of childcare. Only one family had experienced a parent and a child being admitted to hospital at the same time, but for all the families, the possibility of this happening was a great source of anxiety: This is my greatest fear. I don't know what we'd do. My greatest concern is who would look after the other children.

When asked if they would like to be on the same ward as their child, eight of the parents said they would like this if it were at all possible, although one father had a reservation: 'But if I were really bad, I wouldn't want him to see me.' Two parents described their ideal inpatient situation: A self-contained ward. A dedicated AIDS inpatient facility, with a full set of adult consultants, and a full set of paediatric consultants - both sets specifically dedicated to the ward.

DISCUSSION HIV is now becoming a family illness as more women and children are infected with HIV. There is a paucity of literature available about the problems experienced by families with HIV; our study constitutes a preliminary investi-

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gation of this population. There are some limitations to our study. Our sample consists of ten interviews, but did not include any intravenous drug users. Furthermore, the sample was chosen by the paediatricians, and is therefore not a random sample, and may not be statistically representative of the caseload. The sample size was insufficient to examine the problems faced by families of children at different stages of the disease, nor could it be examined how the problems faced by families changed as their child's disease progressed. Given these limitations, this paper has presented the results of ten ninety-minute interviews with parents; the issues raised by parents about the way in which services are delivered were constant across all families interviewed. As an illness which affects the family, HIV creates some unique problems and stresses (i.e., the possibilities of a child and one or both parents becoming ill). There is also the considerable problem of uninfected siblings who may have to watch members of their family die, and possibly be left with one or no parents. The disintegration of a family in this way creates a whole range of challenges for service provision. Current HIV services were set up with a different client group in mind, i.e. homosexual men, and therefore services need to be refocused or expanded in order to meet the needs of families with HIV. Of the sample, only three of the ten children were diagnosed antenatally; for seven families, the child becoming ill was the first indication to the family of an HIV-positive diagnosis. This seems to be indicative of a wider trend. Ades et al. (1993) have examined the problem of underascertainment of children born to infected women by comparing the number of live births to infected women reported by obstetricians with the number of neonatal seropositive samples found by unlinked anonymous HIV testing. In the period up till July 1992, 287 seropositive samples were found out of 509,185 tested in the North East, North West, and South West Thames regions. However, over the same period, only 50 births to infected women had been ascertained before delivery. This confirms earlier work in the same area (Ades et al., 1991) when it was found that obstetricians were aware of maternal HIV infection in only 20% of infected pregnancies. There are a number of service implications arising from late detection of HIV-positive children. Children who are detected late are usually only found because they have become ill. These children often present with serious conditions (e.g., Pneumocystis carinii pneumonia; lymphocytic interstitial pneumonia) which, if the child were monitored from birth, could be treated at an earlier stage or prevented with appropriate prophylaxis. Late diagnosis causes a greater workload for paediatric departments; these children are more likely to require PICU, inpatient facilities, intensive drug therapies, and greater amounts of medical and nursing time. Also, with a late diagnosis, there are greater stresses for the clinical staff who have to deal with a potentially more sensitive and difficult family situation; parents of a newly diagnosed child may still be reeling from the shock of diagnosis, and may not yet have been tested for HIV themselves. However, screening is a sensitive issue, and compulsory antenatal

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screening for HIV remains contentious (Goldberg and Johnstone, 1993; Massiah, 1993). In the sample, 'shared care' with other hospitals seemed to be almost nonexistent. All parents, including those who lived outside London, wanted to continue the child's outpatient care, and any future inpatient care, at the study hospital. There were two main reasons for this. First, parents perceived the study hospital as the centre of excellence for paediatric HIV; they felt that the same clinical expertise was not available in other hospitals. Secondly, parents were very pleased with the care their children had already received from the paediatric HIV team (as inpatients and outpatients). Parents felt the study hospital's environment to be caring, supportive, and non-judgemental, and were therefore unwilling to leave it. Three of the ten families in the sample had experienced prejudice or stigmatizing attitudes from their GPs. This is unacceptable, but difficult to eradicate. Re-education of professionals is needed to prevent situations such as these, but this requires time and scarce resources. Probably more worrying and problematic in terms of service provision is the way families, who were apparently happy with their GPs, were using the service. Parents did not trust the judgement of their GP, and often preferred to use the study hospital's paediatric department for advice and consultation. A local study of GPs showed that there was a willingness to treat HIV-positive patients, especially children (Roderick et al., 1990), but problems arise with this because parents are not confident enough that their GPs have enough knowledge or experience of paediatric HIV to treat their child. These concerns may be legitimate given that the disease is still relatively rare in children, and can present in a variety of different ways. Parents' experiences of other hospitals and GPs have implications for the feasibility of future shared care. As well as training the medical, nursing and ancillary staff in other hospitals and in GP surgeries, the perceptions of parents also need to change before shared care can work. Unless services can inspire confidence in parents, effective shared care between the GP and the hospital will never happen. Parents felt that HIV was something that affected them as a family, not just as individuals, and requested that the family be seen as a unit by services. Organization of current services at the study hospital is not oriented to families. The adult HIV services were organized with a different client group in mind, and HIV-positive women with young children have different requirements of the service. Facilities at the study hospital's adult HIV clinic were also not deemed suitable for children. Parents wanted a centre where they and their children could be seen together. A variety of practical reasons were given for this (e.g., convenience of travel and childcare arrangements; less expense and time needed; and inpatient episodes easier to manage for family) but there was also a stronger feeling, particularly from the mothers, that they wanted a service that was outside the male homosexual culture, and more appropriate to the needs of women and their families.

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Although never asked in a specific question, through the course of the interviews families expressed their feelings about HIV and the effect it had on their lives. Although families tended to be positive about their problems, there was huge anxiety and uncertainty about the future. Families were coping with very difficult situations, most of which were unresolvable. The following comments were made in passing, but describe the kinds of pressures HIV/AIDS puts on families' lives: We don't have very much time. Just waiting. The world doesn't accept us yet. With AIDS so much decision-making is taken out of our hands. I want to keep some charge of my life. I know this sounds callous, but I would much rather they stay well as long as possible and then die quickly, rather than be really ill for a long time then die. I wake up in the morning and it's there, I'm at work and it's there, I'm travelling home and it's there, I go to sleep and it's there. I never understood before how people could commit suicide, but now I do.

At the moment, families infected with HIV are receiving most of their care in the hospital setting where specialist expertise has been developed. Paediatric HIV is still a relatively new phenomenon, and care has tended to be in designated centres where specialist paediatric knowledge has been available. This model has worked successfully so far, but as more children and families become infected with HIV, specialist centres will not be able to cope with the extended caseloads. In many ways the current stage of development of paediatric HIV services is similar to the situation for adult services at the onset of the HIV/AIDS epidemic. Hopefully, in developing paediatric and women's services, we can learn from the experiences of adult services. At some point in the future there will be a need to spread part of the load to other hospitals or the community. There are a number of problems around shared care (e.g., lack of knowledge and expertise in other centres; parents' perceptions of GPs and other hospital services) which need to be addressed in the form of training and re-education before shared care can become a viable model of service which is acceptable both to professionals and families alike. Ultimately, families want to lead normal lives, and for much of the time they can if properly supported. There is a clear call by parents for a 'family-sensitive' service (e.g., a family clinic; family inpatient facility), and current services need to be reorganized and refocused in order to meet this aspiration.

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References Ades, A. E., Parker, S., Berry, T., Holland, F. J., Davison, C. F., Cubritt, D., Hjelm, M., Wilcox, A. H., Hudson, C. N., Briggs, M., Tedder, R. S. and Peckham, C. S. (1991) Prevalence of maternal HIV1 infection in Thames Regions: results from anonymous unlinked neonatal testing. Lancet, 337, pp. 1562-1565. Ades, A. E., Davison, C. F., Holland, R. J., Gibb, D. M., Hudson, C. N., Nicholl, A., Goldberg, D. and Peckham, C. S. (1993) Vertically transmitted HIV infection in the British Isles. British Medical Journal, 306, pp. 1296-1299. European Collaborative Study (1991) Children born to women with HIV-1 infection: natural history and risk of transmission. Lancet, 337, pp. 255-259. European Collaborative Study (1992) Risk factors for mother-to-child transmission of HIV-1. Lancet, 339, pp.1007-1012. Gibb, D. M. (1991) HIV infection in children. Hospital Update, pp. 267-281. Gibb, D. M. and Newell, M. L. (1992) HIV infection in children. Archives of Disease in Childhood, 67, pp. 139-141. Goldberg, D. J. and Johnstone, F. D. (1993) Universal named testing of pregnant women for HIV: many benefits. British Medical Journal, 306, pp. 1144-1145. Massiah, H. (1993) Antenatal HIV testing may put pressure on women. British Medical Journal, 306, p. 1753. Newell, M. L. (1991) HIV spreads among women and children. Midwife Health Visitor and Community Nurse, 27, pp. 166-167. Newell, M. L. (1992) HIV infection: the issues for women and children. Health Visitor, 65, pp. 156-158. Roderick, P., Victor, C. R. and Beardow, R. (1990) Developing care in the community: GPs and the HIV epidemic. AIDS Care, 2, pp. 127-132. Tovo, P. A., de Martino, M., Gabiano, C., Cappello, N., D'Elia, R., Loy, A., Plebani, A., Zuccotti, G. V., Dallacasa, P., Gerraris, G., Caselli, D., Fundaro, C., D'Argento, P., Galli, L., Principi, N., Stegagno, M., Ruga, E., Palomba, E. and Italian Register for HIV Infection in Children (1992) Prognostic factors and survival in children with perinatal HIV-1 infection. Lancet, 339, pp. 1249-1253. Urbano, M. T. and Von Windeguth, B. J. (1992) Preparing preschool programs to care for children with HIV. Journal ofPediatric Health Care, 6, pp. 60-64.

TWENTY

Parents with Human Immunodeficiency Virus Infection: Perceptions of their Children's Emotional Needs Virginia N. Niebuhr, Janice R. Hughes and Richard B. Pollard

Current epidemiological data suggest that the configuration of the HIV-infected population is changing. The percentage of women among the cases of HIV and AIDS is estimated to be at least 12% and increasing (Centers for Disease Control, 1992a; Centers for Disease Control, 1992b). The percentage of heterosexuals is estimated to be > 7% and rising (Centers for Disease Control, 1992a; Centers for Disease Control, 1992b). With the increase in women and heterosexuals with HIV/AIDS, there is an increase in the number of parents with HIV/AIDS. Michaels and Levine have stated that 'the HIV/AIDS epidemic has been responsible for the creation of a new, large and especially vulnerable group o f . . . youth . . . whose mothers have died of HIV/AIDS-related complications' (1992, p. 3459). Through mathematical estimation, Michaels and his group have suggested the impact of HIV/AIDS on the patients' children. Their estimates of the number of US youths who are or will be orphaned by HIV/AIDS are 18,500 in 1992, 45,600 by 1995, and 80,000 by 2000. Some clinical insight has been provided about the needs of families affected by AIDS, but the major focus of published literature has been on the adult family members of an infected patient or the parents of an infected child rather than the child of an infected parent (Frierson et al., 1987; Garrett, 1988; Woodruff and Sterzin, 1988; Robinson et al., 1989; Kelly and Murphy, 1992). Giaquinto and his colleagues in Italy, in their discussions of the impact of HIV/AIDS on children and families, have described HIV/AIDS as a 'family disease'. They have called for national agencies and working groups to identify and educate extended families and foster families to take care of these children (Giaquinto et #/., 1992). However, little research has been conducted on the impact of HIV infection on the children of infected parents.

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The combination of parenthood and HIV infection raises complex issues related to family functioning and children's mental health. Some issues which have not been fully explored include the communication between parent and child about the parent's diagnosis, the child's emotional needs related to the parent's illness, the parent's and family's needs related to helping the child, and the parent's fear of discrimination against the child. The purposes of this research were (a) to provide preliminary epidemiological investigation of the extent to which patients with HIV infection are parents, and (b) to begin addressing the issues of the impact of the parent's disease on the child. METHODS A focus group was conducted involving persons interested in the issues of parents with HIV/AIDS. In attendance were members of the clinical care team for HIV/ AIDS adult patients, including physicians, nurses, physician assistants, social workers, and persons interested in researching the issues. The purpose of the focus group was to identify a research strategy and specific questions. A survey methodology was chosen. A goal was to create a one-page survey which required minimal effort to complete. The survey was constructed to obtain data on general demographics (age, gender, ethnicity), family status (e.g., marital status, number and age of children), and a series of questions assessing parents' perceptions of their children's knowledge of the parent's health, perceptions about communciation with children about HIV/AIDS, and worries and fears related to their children. One question was asked concerning parents' perceptions of their children's knowledge of the parent's HIV/AIDS diagnosis. This question, 'Do your children know of your health condition?' was answered with possible responses of 'no,' 'yes,' or 'not sure'. Two questions assessed parents' perceptions of their own and their children's needs related to their HIV/AIDS. 'How much do you or your family need advice on how to deal with your children around issues related to your health or AIDS?' was answered on a five-point Likert scale ranging from 'not very much' to 'very much'. 'Do you think your children need to talk to someone about your health condition?' was answered with a 'yes,' 'no,' or 'not certain' format. Three questions assessed parents' perceptions about communication with children about HIV/AIDS. 'It is difficult to explain my disease to my children', 'I should discuss AIDS prevention with my child', and 'Schools are doing a good job educating kids about AIDS' were answered on five-point Likert scales ranging from 'strongly disagree' to 'strongly agree'. Finally, two questions assessed parents' worries and fears: 'I worry that my child will be discriminated against if people know about my health condition' and 'I worry about who will care for my child if I die' were answered on five-point Likert scales ranging from 'strongly disagree' to 'strongly agree'.

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The survey was reviewed by members of the AIDS Coalition of Coastal Texas, Inc., a community-based HIV service organization. This research was approved by the university institutional review board. Subjects were recruited from the university medical center HIV/AIDS clinics during 17 clinic days in a 6-week period. This clinic provides both primary and tertiary care to adult patients with HIV infection. Recruitment efforts were conducted by the registration clerks or by research assistants positioned near the nurses' station. An effort was made to ask all registered patients to complete the survey. Patients were instructed to complete the questionnaire only if they had not already done so at a previous clinic visit. Time to complete a survey was less than 5 minutes, and surveys were collected immediately on completion. Anonymity was ensured because no names were recorded on the questionnaires or at any time during the project. X2 analyses were performed to determine whether the distributions of responses differed depending on marital status, ethnicity, gender of the parent, or age of the child. Descriptive statistics were used to present the responses to the seven questions of parental perceptions. Two questions implied certain cognitive/linguistic abilities from the children (e.g., children's awareness of parent's health condition and children's need to talk to someone about their parent's health); and for these two questions, the data were analyzed only for parents whose children were > 4 years of age.

RESULTS Response Rate

During a 6-week period, 520 patients were seen in the HIV/AIDS clinic and 443 patients were offered the survey, representing an approach rate of 85%. Two reasons explain why all patients were not offered the survey: patients were not offered the survey if they were returning to the clinic a second time within the 6-week period, and during very busy clinic registrations, the clerks simply missed offering surveys to a few patients. Refusal rate was only 5.6% (n = 25). The only stated reason for refusal was the patient feeling too ill to concentrate on the task. Comparison of the number of surveys distributed to the number returned revealed a return rate of 81%. Another four surveys were returned with enough missing data as to be unscoreable. Thus, surveys were completed by 242 patients. This represented slightly more than onefourth (27.8%) of the active patients cared for in these clinics. Demographics Of the 242 respondents, 31.8% (n = 77) were parents. Of the 200 men, 22.5% were parents (n = 45); of the 41 women, 75.6% were parents (n = 31). (Note: gender data for one parent were missing.)

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These parents collectively had 138 children, ranging in age from < 1 year to age 48. For this group of children of HlV-infected parents, 13.5% (n = 11) were infants up to age 1, 14.9% (n = 17) were preschoolers aged 2 through 4, 29.7% (n = 39) were elementary school children aged 5 through 12, 24.3% (n = 36) were adolescents aged 13 through 21, and 17.6% (n = 35) were > 21 years of age. Only 5 of these children were also HIV+ or had AIDS; all these were < 5 years of age. Several survey questions were analyzed for parents whose children were > 4; 54 parents were in this subset. The gender, age, and ethnic demographics for the sample of patients and the subsample of parents are presented in Figure 20.1. The ethnicity and age distributions are similar between the entire sample and the subsample; but the gender distributions differ, with a considerably higher percentage of women in the parent subsample than in the entire patient sample. The gender, age, and ethnicity distributions of the entire sample are equivalent to that of the overall population cared for in these clinics. Slightly more than one third of the HIV-infected parents were married (36.6%). The distribution of marital status did not differ significantly between fathers and mothers (x2 = 0.65, d.f. = 1, P = 0.42). None of the questions revealed differences based on marital status or gender. Issues Questions

When asked if their children knew of their diagnosis, 55.7% (n = 29) of parents reported that their children knew of their diagnosis, 34.6% (n = 18) reported their children did not know, and 9.6% (n = 5) reported they were not sure what their children knew (missing data = 2; sum = 54 subjects with children > 4 years old, the age we determined could 'know' of the diagnosis). This was the only question on the survey which showed a difference in response distribution based on ethnicity (x2 = 10.8, d.f. = 4, P = 0.03). The breakdown of responses by ethnicity is presented in Figure 20.2. Perceptions of need for help are presented in Table 20.1. Responding to whether they needed help for themselves or their family, nearly half of all parents (48%, n = 32) reported that they did not need help related to dealing with the children concerning the issues of the parent's health or AIDS (combination of points 1 and 2 on the Likert scale), one-fifth (21%, n = 14) indicated they did need help (combination of points 4 and 5 on the Likert scale), and nearly one-third was noncommittal or unsure (30%, n = 20). Two-thirds of parents believed their children needed to talk to someone about their parent's health (66.7%, n = 34). Responses to questions about communication with children are presented in Table 20.2. Parents were divided on whether they perceived difficulty in explaining their disease to the children (42.5% combined 'strongly disagree' or 'disagree'; 47.5% combined 'strongly agree' or 'agree'; 10% neutral). Less than one-third of parents indicated that they 'should discuss AIDS prevention with . . . child' (30.8% combined 'strongly agree' or 'agree'). Slightly more than half

PARENTS WITH HIV AND CHILDREN'S EMOTIONAL NEEDS 2 255

Figure 20.1 Demographics of patients/parents [n = 242 patients, n = 77 parents).

the parents agreed that 'schools are doing a good job educating kids about AIDS' (51.4% 'strongly agree' or 'agree'). Responses about parents' worries are presented in Table 20.3. More than onethird of the parents (53.5%, n = 38) reported that they were worried or very worried that their children would be discriminated against because of the parent's diagnosis. Nearly half the parents expressed worry about 'who will care for my child if I die' (46.5% 'strongly agree' or 'agree').

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Figure 20.22 Responses to question: 'Does your child know about your health condition?'

X2 analyses revealed no significant differences in the distributions of responses when analyzed by age of child, marital status of parent, or gender of parent.

DISCUSSION Our findings revealed that nearly one-third of the HIV-infected patients are parents. Women comprise one-sixth of the total patient sample, but two-fifths of the parent subsample. According to reports from the 1992 Eighth International Conference on AIDS in Amsterdam, women are now acquiring HIV infection almost as often as men and by the year 2000, more than half of all newly infected adults may be women (Merson, 1991). It follows from these predictions that there will be an increasing number of mothers with AIDS. Unfortunately, information was not obtained from this survey about whether the parent lived with the child or about the strength of the parent-child relationship. We know that many children of HIV-infected parents do not live with either parent but instead are in foster care. Divorce and parenthood outside marriage also contribute to high rates of children not with parents. It is likely that the nature of the parent-child relationship would affect what the parent thinks the child knows and what the parent perceives are the child's needs. In addition, it is important to note that many of the 'children' of HIV-infected patients are adult children. Their needs are likely very different from those of younger children.

Table 20.1 Parents' perceptions of their own needs and their children's needs for assistance related to the parent's health condition Missing data

Responses, % (n) Likert scale anchors

How much do you or your family need advice on how to deal with your children concerning issues related to your health or AIDS, (e.g., what to tell the children, how to answer their questions, what plans to make for them should you die?)

Do you think your child needs to talk to someone about your health condition? (for parents whose children are >4 years old)

1 Not very much

2

3

4

5 Very much

37.9 (25)

10.6(7)

30.3(20)

7.6(5)

13.6(9)

(ID

No

Not sure

Yes

Missing data

66.7(34)

21.5(11)

1 1 .8 (6)

(3)

Table 20.2 Responses to questions about communication with children Responses from parents of children > 4 years, 5&{n) Likert scale anchors

It is difficult to explain my disease to my children 1 should discuss AIDS prevention with my child Schools are doing a good job educating kids about AIDS

Table 20.3

1 Strongly disagree

2

3

4

5 Strongly agree

12.5(5) 30.8(12) 21.6(8)

20.0(8) 12.8(5) 5.4(2)

10.0(4) 25.6(10) 21.6(8)

17.5(7) 12.8(5) 13.5(5)

40.0(16) 18.0(7) 37.9(14)

Missing data

(13) (14) (16)

Parents' worries and fears Missing data

Responses, % (n) Likert scale anchors

1 worry that my child will be discriminated against if people know about my health condition 1 worry about who will care for my children if 1 die

1 Strongly disagree

2

3

4

5 Strongly agree

29.6(21) 31.0(18)

2.8(2) 12.1(7)

14.1(10) 10.3(6)

7.0(5) 10.3(6)

46.5 (33) 36.2(21)

(6) (19)

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According to the parents, slightly more than half of the children > 4 years of age know of their parents' diagnosis. Should we be more concerned about the emotional needs of these children who know or about the emotional needs of the children who have not yet been told? Or should we be concerned about the parents who have not yet been able to tell their children of their diagnosis or who are uncertain whether their children know about the diagnosis? These results provide some indication of parents' perceptions of what their children know about the parents' health status. However, this assessment indicates nothing about what the children actually know about their parents' health status, what they understand about HIV/AIDS, or their emotional reaction to knowing about their parents' illness. Further investigation from the children's point of view would be valuable, although admittedly difficult to obtain from children of parents who have not disclosed the diagnosis or who would not likely give permission for access to the children because of fear of discrimination. Overwhelmingly, parents did not perceive that their children needed emotional help with these issues nor did the parents themselves perceive they needed assistance in interacting with the children concerning issues of HIV/AIDS. Other research has revealed similar findings that HIV-infected family members rarely seek help outside their informal social network and families tend to withdraw socially and try to cope without outside help because of distrust and social anxieties (Remplein-Keller et al., 1991; Taggart et al., 1992). Perhaps the failure to recognize the child's emotional need comes from the insecurity of not knowing how to help or from fear of asking for help but not finding it available. Perhaps these parents have a genuine desire to protect their children from exposure and possible discrimination. Or perhaps parents are embarrassed and unable to admit to the children their own behaviors which led to HIV infection. It is possible that there are parents who want to discuss the impact of their illness on their children and their children's needs but who just do not know whom to approach or how to raise these concerns. It is difficult to know if these reservations might have been strong enough to prevent parents from expressing true concerns even on this survey. Further investigation is needed to better understand the parents' reservations about talking to their children. Ethnic differences were suggested by the data on which children knew of their parent's diagnosis. White parents were more likely than black or Hispanic parents to state that their children knew of their diagnosis. Black parents were more likely than the other groups to state their children did not know of the diagnosis, and Hispanic parents were more uncertain than the other two groups. These data are in concert with other published data, suggesting that non-Hispanics are more likely than Hispanics to discuss AIDS with their children (Centers for Disease Control, 1991). Overall, these preliminary findings have significant implications for healthcare providers of HIV-infected patients. Some members of the healthcare team for these subjects report that, since the beginning of this project, they have become

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more aware of the potential issue of parenthood and are more likely to ask the patient about their parental status. Other members of the healthcare team have expressed increased apprehension about how or whether to approach the patient regarding this issue. If the patients with AIDS are not acknowledging that their children have emotional needs related to the illness, it may be difficult for the healthcare staff to address the children's needs. Experiences at this HIV/AIDS clinic have included several cases of a social worker referring the family to a pediatric psychologist for assistance for the children, only to have the appointment missed by the unwilling family. Once a parent, child, or health professional recognizes the need for assistance, will there be available resources? Do we know enough about the emotional needs of the child of an HIV-infected parent? Much is known about children's experiences and needs when facing the death of a parent (Furman, 1974; Hummer and Samuels, 1988; Galloway, 1990; Kranzler et al., 1990; Siegel et al., 1990; Fitzgerald, 1992), and certainly some of this can be applied to the special needs of the AIDS orphans. However, because of societal reactions to HIV infection compared with other terminal illnesses, this body of knowledge can only partly help us understand the issues. Infection with HIV carries a definite stigma that affects community support and extended family acceptance and adjustment, and interventions will need to be tailor-made for these children. Already the mental health needs of AIDS patients are underserved; and, in general in this country, the mental health needs of children are underserved. The unfortunate combination of being a child of a parent with AIDS places that child at high risk for lack of access to mental health care. It may be that those healthcare professionals who best understand the plight of the AIDS orphans are the ones who must now take political action, as suggested by Nicholas and Abrams in their recommendation to identify 'the federal, state and local actions that are needed to meet the needs of every person . . . affected by the AIDS epidemic' (1992, p. 3479). There is an increasing possibility that HIV-infected patients may be parents facing hard decisions about the future of their children. The patients may eventually turn to their healthcare providers to help with or locate resources to help with the social and emotional needs of the children. Or perhaps the care providers, when grappling with the many ethical dilemmas of caring for patients with HIV/AIDS, will conclude that they need to coax patients to deal with these issues. Hopefully, the patients and the care providers will be able to deal with these issues sooner than in the patient's last days of life. These findings also have implications for professionals who interact with children (e.g., pediatricians, mental health professionals, and school personnel). These professionals must become aware of the increasing probability that they will encounter children/youth who have or will soon be orphaned by AIDS. If a child is having increased difficulties with social or academic adjustment or having increased stress-related health problems, in the search for contributing factors, it may be worth asking about parents' health. A recent survey has revealed that

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parents' physical and mental health ranks among the top five worries of adolescents (Kaufman et al., 1993). Add this 'normal' tendency to worry about parent's health to the existence of an illness as serious as HIV/AIDS, and the probability that the teenager will worry is very great. Less is known about the worries of younger children related to parent's health. It may be through careful questioning that a sensitive professional may be able to identify concerns of a child whose parent has HIV/AIDS. A better understanding of the emotional, social, and health needs of children of HIV-infected parents and an increased understanding of how healthcare professionals can respond to the parents and the children are needed. In the meantime, all those who work with HIV-infected adults and all those who work with children must acknowledge the increased probability that the HIV-infected adult may be a parent and that an increasing number of children are affected by HIV infection in the family.

REFERENCES Centers for Disease Control (1991) Characteristics of parents who discuss AIDS with their children United States, 1989. Morbidity and Mortality Weekly Report, 40, pp. 789-791. Centers for Disease Control (1992a) HIV/AIDS Surveillance Report, pp. 6-8. Centers for Disease Control (1992b) Update: acquired immune deficiency syndrome - United States, 1991. Morbidity and Mortality Weekly Report, 41, pp. 463-468. Fitzgerald, H. (1992) The Grieving Child: A Parent's Guide (Fireside Books, New York). Frierson, R. L., Lippmann, S. B. and Johnson, J. (1987) AIDS: psychological stresses on the family. Psychosomatic*, 28, pp. 65-68. Furman, E. (1974) A Child's Parent Dies (New Haven, CT, Yale University Press). Galloway, S. C. (1990) Young adults' reactions to the death of a parent. Oncology Nursing Forum, 17, pp. 899-904. Garrett, J. E. (1988) The AIDS patient: helping him and his parents cope. Nursing, September, pp. 50-52. Giaquinto, C., Giacomet, V., Pagliaro, A. et al. (1992) Social care of children born to HIV-infected parents. Lancet, 339, pp. 189-190. Hummer, K. M. and Samuels, A. (1988) The influence of the recent death of a spouse on the parenting functioning of the surviving parent, in: S. Allschul and G. H. Pollock (eds), Childhood Bereavement and its Aftermath (New York, International Universities Press). Kaufman, K. L., Brown, R. T., Graves, K., Henderson, P. and Revolinski, M. (1993) What, me worry? A survey of adolescents' concerns. Clinical Pediatrics, 32, pp. 8-14. Kelly, J. A. and Murphy, D. A. (1992) Psychological interventions with AIDS and HIV: prevention and treatment. Journal of Consulting and Clinical Psychology, 60, pp. 576-585. Kranzler, E. M., Shaffer, D., Wasserman, G. and Davies, M. (1990) Early childhood bereavement. Journal of the American Academy of Child and Adolescent Psychiatry, 29, pp. 513-520. Merson, M. J. (1992) AIDS: the world situation. Journal of Public Health Policy, 13, pp. 18-26. Michaels, D. and Levine, C. (1992) Estimates of the number of motherless youth orphaned by AIDS in the United States. Journal of the American Medical Association, 268, pp. 3456-3461.

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Nicholas, S. W. and Abrams, E. J. (1992) The 'silent' legacy of AIDS: children who survive their parents and siblings. Journal of the American Medical Association, 268, pp. 3478—3479. Remplein-Keller, S., Bruns, E. and Ermann, M. (1991) The social network of families of HIV-infected patients. Journal of Psychosomatic Medicine and Psychoanalysis, 38, pp. 143-155. Robinson, B. E., Walters, L. H. and Skeen, P. (1989) Response of parents to learning that their child is homosexual and concern over AIDS: a national study. Journal of Homosexuality, 18, pp. 59—80. Siegel, K., Messagno, P. and Christ, G. A. (1990) A prevention program for bereaved children. American Journal of Orthopsychiatry, 60, pp. 168-175. Taggart, M. E., Reidy, M. and Asselin, L. (1992) Psychosocial aspects of certain fundamental needs of families with a child with HIV infection. Canadian Journal of Public Health, 83, pp. 42-46. Woodruff, G. and Sterzin, E. D. (1988) The transagency approach: a model for serving children with HIV infection and their families. Child Today, May-June, pp. 9-14.

TWENTY-ONE

Childhood Bereavement Due to Parental Death from Acquired Immunodeficiency Syndrome Karolynn Siegel and Eileen Gorey

Because AIDS is a universally fatal disease, loss and bereavement are prominent psychosocial issues. That it is a stigmatized disease, and one that often affects multiple family members, suggests that resolution of the tasks of mourning by the bereaved may be complicated (Klein and Fletcher, 1986; Trent, 1987; Fawzy et al., 1991; Worden, 1991). However, no studies have been conducted that identify what differs in the grief process when the death was AIDS-associated and whether the extensive clinical and research literature on bereavement can be generalized to AIDS. To date, existing research on this question has focused almost exclusively on gay men who have lost lovers or friends to AIDS and who themselves may be HIV-infected, and has primarily addressed the psychologic impact of multiple loss (Martin, 1988; Viney et al., 1991-1992; Neugebauer et al., 1992). This paper will focus on another, largely neglected, bereaved population who has suffered AIDS-related loss - the uninfected children of mothers who die of AIDS, or those often referred to as 'AIDS orphans'. This population is defined in terms of maternal, rather than paternal, loss, because in most affected families, the mother is the caretaker and the father is absent. A review of the published literature produced no empirical studies of the grief reactions of AIDS orphans and only recently have their mourning problems begun to receive attention in the clinical literature (Dane and Miller, 1992; Siegel and Freund, 1994). One unpublished study focused on the mental health needs of healthy adolescents (ages 10 to 19) living in 40 families in which a parent had AIDS or had already died of AIDS (Draimin et al., 1992). At the end of 1991 it was estimated that the number of AIDS orphans ranged from between 14,500 (Caldwell et al., 1992) and 18,200 (Michaels and Levine,

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1992), but by the year 2000, that number will rise to between 80,000 (Michaels and Levine, 1992) and 112,000 (Caldwell et al., 1992). Such a large and growing number of affected children and adolescents makes it essential that we learn about their needs so that effective interventions can be provided. We begin with a brief discussion of factors that may complicate the grief process for those who lose a significant other to AIDS. Then, we discuss factors that the literature on childhood bereavement suggests may influence adjustment to parental death. Next, we apply this literature to children losing a parent to AIDS. Finally, we propose some recommendations for future research. We have chosen not to consider the grief reactions of HIV-infected children who have lost a mother to AIDS, because we believe that their circumstances are unique - i.e., coming to terms with their own illness and probable death while simultaneously confronting the loss of a parent - and require a separate discussion. Further, although we have defined AIDS orphans in terms of maternal death, when the father has been involved with his children, his death from AIDS would be of similar psychologic significance to that of the mother's death, and our observations would similarly apply.

FACTORS COMPLICATING THE MOURNING OF AN AIDS-RELATED DEATH Stigma The social stigma that has been attached to AIDS is perhaps the most frequently cited factor complicating the work of mourning. As Gray (1991) has written, 'Unlike other families with a member who has a life-threatening illness, families with AIDS must uniquely contend with societal disapprobation . . .' They are themselves the victims of social stigmatization and ostracism. Giancquinta (1989) interviewed 45 family members of 27 people with AIDS, most of whom were gay males. He described their stigmatization by society at large and their 'emotional exile' from close relatives and friends, sometimes self-imposed. Because of the stigma and discrimination associated with AIDS, the illness and cause of death are often kept secret. Frequently, the children are either not told the true diagnosis or told not to reveal it to anyone outside the family. Even within the family, discussion about the illness and cause of death may be avoided, and extended family members may be kept uninformed. This secrecy is motivated by both shame and by a fear of the social consequences of the parent's HIV status becoming known. For example, the patient and family members may be subject to social isolation or ostracism, their housing may be jeopardized, and the children may experience ridicule and rejection by peers at school. Although the need for discretion in disclosure is clear, an unfortunate consequence of such secrecy is that families will not receive the social support that can buffer the stress of an event like death. Doka (1989) has discussed the phenomenon of 'disenfranchised grief, which

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'. . . can be defined as grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported'. It typically occurs under three circumstances: (1) when the relationship between the deceased and the griever is not socially recognized (e.g., gay men and their lovers), (2) when the loss is not socially recognized (e.g., abortions), and (3) when the griever is not socially defined as capable of grief (e.g., children, the mentally impaired). Disenfranchised grief can exacerbate bereavement (Doka, 1989) by intensifying strong emotional reactions typically associated with bereavement, such as anger, guilt, and depression. In the cases of AIDS, family members may feel particular anger at the deceased for having a self-destructive lifestyle and for the potential shame he/she has brought upon the family. Two other factors, ambivalent feelings about relationships and concurrent crises, also tend to complicate grief work. For example, ambivalence is common between family members and HIVinfected individuals. Whereas the family may love the infected individual and feel a strong sense of obligation to assist him/her, they may also resent the burden and family disruption imposed by the illness and death. Multiple Loss It is not unusual for more than one family member to be infected with HIV. For example, both parents may be infected because sexual intercourse has led to the transmission of infection from one to the other, or because they shared needles for intravenous drug use; mother and child may be infected with the child having acquired HIV infection perinatally. Further, because participation in some risk behaviors, such as intravenous drug use, often affect more than one generation, both a parent and grandparent may be infected. Whatever the family constellation of infection, a large proportion of AIDS orphans will lose more than one family member to AIDS. Almost two decades ago, Kastenbaum (1977) coined the term 'bereavement overload' to refer to the elderly who experienced many friends' deaths within a relatively short time. The task of emotionally integrating multiple loss is a difficult one, even when it is anticipated. How much more overwhelming multiple loss must be for children who typically mourn in a more intermittent pattern than adults (i.e., alternating between confronting the loss and denying it) because of their limited capacity to tolerate the psychic pain of a meaningful loss (IMCHCSB, 1984).

DEVELOPMENT AND BEREAVEMENT Response to parental loss will vary according to a child's developmental stage primarily because children of diverse ages have different cognitive capacities to understand the meaning and causes of death (Christ et al., 1993). Some believe that before age 3 or 4, the concept of death is too abstract for children's immature

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cognition development, but others argue that by age 2 or 3, children are able to understand the external fact of their loss and to experience the corresponding inner changes (Sekaer, 1987). As children progress from age 3 to about age 6 they begin to gain some limited understanding of death, but generally still do not grasp the finality of death (Schaefer and Lyons, 1986). As they mature, their capacity for abstract thinking increases as part of normal development and maturation. By age 7 or 8 children have the capacity to begin to grasp the finality of death. By ages 10 and 11, the causes of death can be understood, and death is perceived as final and inevitable (Osterweis et al., 1984). At least two fundamental differences between adult mourning and childhood mourning can be identified. First, adults will eventually detach memories and hopes from the dead person (Furman, 1974; Schaefer and Lyons, 1986). Children have a completely different goal (Miller, 1971) - to both accept and avoid the reality of death. That is, while acknowledging the loss of the parent in the external world, children try very hard in their inner world to maintain the relationship with the deceased. Wessel (1973) argued that children will often attempt to keep the deceased parent 'alive' in their minds because of their intense need to possess a mother and father, especially in the first year of the loss. Reunion fantasies may be common and represent both an attempt to maintain a tie to the parent and also to stave off an emotional emptiness created by the loss (Arthur, 1964). Second, children's mourning tends to be more intermittent than that of adults. Children are more limited in their capacity to confront and manage the emotional impact of the loss; thus, they will tend to alternate between periods of mourning and periods of not acknowledging the loss or pain. For example, children may be sad and weepy upon learning of a parent's death, but this typically lasts only a short time (Wessel, 1973). Days, or even hours later, they may act as if nothing unusual has transpired. Wolfenstein (1966) referred to this phenomenon as the child's 'short sadness span' and suggested that it represented the limits of a child's tolerance for confronting the pain of the loss. CONDITIONS THAT INFLUENCE ADJUSTMENT TO PARENTAL DEATH A review of the clinical and research literature on childhood bereavement suggests three factors to be of central importance to children's adjustment to parental loss: the quality of care and support children receive from their primary caretaker after the death, open family communication about the illness and death, and the stability of their environment (Siegel, 1990). Sustained Provision of Care and Support After a parental death, children's needs for love, support and care are enormous. Meeting their basic physical and emotional needs is a necessary precondition to permit mourning (Furman, 1983). If these needs are unmet, mourning may be inhibited because anxiety leads them to deny the loss (Miller, 1971; Furman,

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1974; Raphael, 1982). Indeed, denial of the loss is often part of the clinical picture of adults who were unable to mourn in childhood when the death occurred and enter therapy years after the parental death (Wolfenstein, 1969). Young children, in particular, may be preoccupied with practical day-to-day functioning and activities after a parent's death (Christ et al, 1993). They worry about who will care for them and adequately meet their basic needs for food, physical care, and safety. The quality of care and support children receive after a parent's death can protect against adult disorder (Bowlby, 1980; Garmezy, 1983). Among girls younger than age 17, the lack of adequate care after the death of a mother is a more potent risk factor for depression than the loss itself (Brown et al., 1986; Bifulco et al., 1987). Open Family Communication Bereaved children need an environment in which they feel free to communicate their thoughts and fantasies about the parent's death. A common experience of children with pathologic grief reactions is an absence of parent communication about the loss, which fosters avoidance and denial (Becker and Margolin, 1967; Rosenthal, 1980). Healthy adaptation to a parent's death is more likely when the family communicates, openly shares information, and makes decisions collectively (Kliman, 1973; Cohen et al., 1977). In one study, the most significant situational factor characterizing children having difficulty mourning was inadequate and unrealistic communication about the death (Greenberg, 1975). Children's adjustment to parental death has been found to be less difficult when families tolerated the open expression of anger, guilt, sadness, and loss (Volman et al., 1971), and shared information and feelings about the loss (Hilgard et al., 1960; Warren, 1972; Kliman, 1973; Bowlby, 1980; Black and Urbanowicz, 1987). When children are inhibited from asking questions about a parent's illness and/or death, misconceptions can persist and be a significant source of psychologic distress. For example, when a parent dies, a common fantasy among latencyage children is that their own aggresssive behavior, misbehavior, or evil thoughts have been instrumental in the death (Schaefer and Lyons, 1986). Children may also believe that if they had done something differently, such as helped the parent more at home, they could have prevented the unhappy outcome. Additionally, they may view their parent's death as a punishment for their own bad behavior or thoughts, which leave them feeling confused and guilty. Consistency and Environmental Stability Extensive environmental change is likely to have an adverse impact on children's adjustment to parental loss by contributing to their perception of having little control over their world (Rutter, 1966; Nagera, 1970; Furman, 1983). Feelings of powerlessness and helplessness may ensue. Bereaved children feel more secure in and draw comfort from familiar surroundings and predictable routines,

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whereas chaos and disorganization can evoke anxiety and insecurity (IMCHCSB, 1984). Furman (1974) and Rutter (1979, 1983) have argued that changes in children's environment at the time of parental death are stresses that jeopardize children's adjustment.

PARENTAL LOSS TO AIDS In this section we join together the literature on complicated mourning after an AIDS-related death with the literature on children's adjustment to a parent's death. Because of the perceived risks associated with disclosure of HIV infection, secrecy is common. However, it assumes particular importance for many minority families (Mays and Cochran, 1987; Boyd-Franklin and Aleman, 1990). Immediate family members of minority persons with AIDS frequently keep the diagnosis secret from the extended family members because of the powerful cultural stigma attached to homosexuality and intravenous drug abuse (Carballo-Diegues, 1989; Dalton, 1989; Morales, 1990). The stigma and secrecy surrounding AIDS can have many adverse consequences on AIDS orphans. They may not be permitted to talk about the illness and death either within or outside the family. Dane and Miller (1992) have noted that children who lose a parent to AIDS may feel guilty and, without discussing their feelings, they may blame themselves. Further, when children know there is a family secret they are not told, it engenders feelings of isolation. Secrecy about a parent's diagnosis or death quickly leads children to believe that something shameful has occurred. In one study, none of the adolescents interviewed had revealed the mother's HIV diagnosis even to his or her closest friend (Drairm'n et al., 1992). The shame these children feel is not only self-imposed — they frequently are the target of ridicule by classmates and peers. That is, they may be subject to what Goffman (1963) has called a courtesy stigma, in which the stigma attached to a particular individual is extended to his/her close associates. Taunting by peers and discrimination at school can seriously undermine emotional well-being, social competence, and achievement (Rinella and Dubin, 1988). It is likely that uninfected children might worry that they have contracted AIDS from an ill parent. They may be anxious about their own future health and so constitute an overlooked population of 'worried-well individuals'. Yet, because family communication about HIV/AIDS is usually discouraged, such distressing misconceptions often go uncorrected. The very real social discrimination that infected and related individuals suffer may justify secrecy, but this secrecy also precludes open expression of grief, accessing of appropriate support systems, and participation in the societal rituals that facilitate grief work and the process of decathexis. The sustained care, support, and environmental stability so important to adjustment after parental death often are compromised among AIDS orphans.

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Mothers often fail to make adequate custody plans for their children. This lack of planning may result from denial of the illness or its severity, fear of disclosure, absence of a potential guardian, lack of legal counseling, previous negative experience with lawyers and the court system, misunderstandings about the rights of the guardian before the death, and cultural beliefs that acknowledging the possibility of a negative event (death) will increase the likelihood that the event will occur (Draimin et al., 1992; Nicholas and Abrams, 1992). In the absence of proper planning, AIDS orphans may be placed in foster care or another temporary care situation, which increases their vulnerability to physical or psychologic distress. Further, when custody planning does not occur, siblings are more likely to become separated. Frequently, relatives will agree to assume custody for younger children but not for adolescents, especially if they exhibit behavioral problems (e.g. truancy, drug use, or sexual acting-out) (Draimin et al., 1992). Yet, in socioeconomically disadvantaged families, older siblings are often the primary caretakers of younger ones. Consequently, dependency on and attachment to older siblings can be quite strong. In these cases, if the sibling group is divided after the death, the pain of the loss of the parent will be compounded by separation from brothers and sisters (Tiblier et al., 1989). On the other hand, it must be acknowledged that a significant number of AIDS orphans are the children of drug-abusing mothers who may have provided only minimally adequate care. Dane and Miller (1992) have observed that some children may actually receive more stable and adequate caregiving in their new placement. They write, 'In these cases, grandmothers or other custodial parents provide basic necessities and stability previously unknown or inconsistently available to these youngsters.' The chronic phase of HIV infection is typically characterized by recurrent multiple episodes of acute illness. An infected parent may experience hospitalization or periods of significant debilitation before death. Thus, by the time the death occurs, children already may have experienced many separations and varied caregivers. In these cases, the child already may have developed effective adaptations to the kinds of changes that typically accompany parental death. When this occurs, the stress of readjustment to a world without the parent may be somewhat eased. The death of a parent may be only one of several losses. Dane and Miller (1992) note that children who experience multiple losses across generations 'lose the security of the relationships and a familiar environment'. Their sense of security may be totally disrupted, evoking concerns about their own survival and that of others they care about and depend on. Survivor guilt, that they escaped the ravages of HIV while the parent and possibly other family members have suffered, also may be a common reaction when multiple family members have been infected and die.

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RECOMMENDATIONS FOR FUTURE RESEARCH Although limited data are available regarding the experiences of uninfected children who lose a mother to AIDS, they do suggest that factors that facilitate a successful resolution of the loss are likely to be absent for a substantial proportion of these children. Typically, these children also confront multiple losses and stresses in their lives (Draimin et al., 1992) and a range of chronic unmet social, educational, and healthcare needs (Tiblier et al., 1989). Because stressors can have a synergistic risk effect (Wolkind and Rutter, 1985), these children would seem to be at substantially increased risk for psychopathology. A priority area for future research is the grief reactions of children losing a parent to AIDS. Is the course of childhood mourning in this population different from that among children losing a parent to any other illness? Another comparison population might be children whose parent commits suicide. Like AIDS-related death, suicide is stigmatized and often is concealed from both child and adult family members. Is the prevalence of pathologic or complicated grief reactions higher among AIDS orphans than among these other groups? It also might be advantageous to investigate whether these children are prone to the kind of pessimistic expectation and foreshortened view of the future that Terr (1983) described among children experiencing past psychic trauma and profound feelings of helplessness. Beyond describing the prevalence of pathologic grief reactions in this population, future research should identify facts that increase risks for pathologic grief reactions and factors that are protective. Given the limited practical resources available to this population, research should focus on identifying more naturally occurring 'protective' resources (e.g., strong extended family networks, religious beliefs, and reliance on older siblings). Additionally, because AIDS orphans may be socially isolated, and family discussion about the illness typically restricted, how do these children obtain emotional support? Given the well-documented value of emotional support in buffering the impact of negative stressful life events, this is an important issue to address. If, when, and how disclosure of the mother's diagnosis is made to the children and how these variables are associated with the impact of the disclosure and of her subsequent death are issues that also warrant more systematic investigation. Although most professionals would stress the importance of disclosure, are there circumstances under which some children should not be told? What kinds of supports should ideally be in place before disclosure to children occurs?

REFERENCES Arthur, B. and Kemme, M. L. (1964) Bereavement in childhood. Journal of Child Psychology and Psychiatry, 5, pp. 37-49.

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Becker, B. and Margolin, F. (1967) How surviving parents handled their young children's adaptation to the crisis of loss. American Journal of Orthopsychiatry, 37, pp. 753-757. Bifulco, A. T., Brown, G. W. and Harris, T. O. (1987) Childhood loss of parent, lack of adequate parental care and adult depression: a replication. Journal of Affective Disorders, 12, pp. 115-128. Black, D. and Urbanowicz, M. A. (1987) Family intervention with bereaved children. Journal of Child Psychology and Psychiatry, 28, pp. 467-476. Bowlby, J. (1980) Loss (New York, Basic Books). Boyd-Franklin, N. and Aleman, J. A. (1990) Black, inner city families and multigenerational issues: the impact of AIDS, New Jersey Psychologist, 40, pp. 14-17. Brown, G. W., Harris, T. O. and Bifulco, A. (1986) Long-term effects of early loss of parent, in: M. Rutter, C. E. Izard and P. B. Read (eds), Depression in Young People: Developmental and Clinical Perspectives (New York, The Guilford Press), pp. 251-296. Caldwell, M. B., Fleming, P. L. and Oxtoby, M. J. (1992) Estimated number of AIDS orphans in the United States (letter). Pediatrics, 90, p. 482. Carballo-Diegues, A. (1989) Hispanic culture, gay male culture, and AIDS: counseling implications. Journal of Counseling and Development, 68, pp. 26-30. Christ, G. H., Siegel, K., Freund, B. et al. (1993) Impact of parental terminal cancer on latency-age children. American Journal of Orthopsychiatry, 63, pp. 417—425. Cohen, P., Dizenhuz, I. M. and Winget, C. (1977) Family adaptation to terminal illness and death of a parent. Social Casework, 58, pp. 223-228. Dalton, H. L. (1989) AIDS: in blackface. Daedalus, 118, pp. 201-227. Dane, B. O. and Miller, S. O. (1992) Intervening with Hidden Grievers (Westport, CT, Auburn House). Doka, K. (1989) Disenfranchised grief, in: K. J. Doka (ed.), Disenfranchised Grief: Recognizing Hidden Sorrow (Lexington, MA, Lexington Books), pp. 3-11. Draimin, B., Hudis, J. and Segura, J. (1992) The Mental Health Needs of Well Adolescents in Families with AIDS: A Study Funded by the National Institute of Mental Health and the Health Resources and Services Administration (New York, Human Resources Administration Division of AIDS Services). Fawzy, F. L., Fawzy, N. W. and Pasnau, R. O. (1991) Bereavement in AIDS. Psychiatric Medicine, 9, pp. 469-482. Furman, E. (1974) A Child's Parent Dies: Studies in Childhood Bereavement (New Haven, CT, and London, Yale University Press). Furman, E. (1983) Studies in childhood bereavement. Canadian Journal of Psychiatry, 28, pp. 241-247. Garmezy, N. (1983) Stressors of childhood, in: N. Garmezy and M. Rutter (eds), Stress, Coping and Development in Children (New York, McGraw-Hill), pp. 43-81. Giancquinta, B. S. (1989) Researching the effects of AIDS on families. American Journal of Hospice Care, 6, pp. 31-36. Goffman, E. (1963) Stigma (Englewood Cliffs, NJ, Prentice-Hall). Gray, M. (1991) Helping the children of parents who die of AIDS, in: C. Newnes (ed.), Death, Dying and Society (London, Lawrence Erlbaum Associates), pp. 234—248. Greenberg, L. I. (1975) Therapeutic grief work with children. Social Casework, 56, pp. 396-403. Hilgard, G. R., Newman, M. F. and Fisk, F. (1960) Strength of adult ego following childhood bereavement. American Journal of Orthopsychiatry, 30, pp. 788-798. IMCHCSB (Institute of Medicine Committee on the Health Consequences of the Stress of Bereavement) (1984) Bereavement during childhood and adolescence, in: M. Osterweis, F. Solomon and M.

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Green (eds), Bereavement: Reactions, Consequences and Care (Washington, DC, National Academy Press), pp. 99-141. Kastenbaum, R. J. (1977) Death and development through the life span, in: H. Friegel (ed.), New Meanings of Life (New York, McGraw-Hill), pp. 35-47. Klein, S. J. and Fletcher, W. (1986) Gay grief: an examination of its uniqueness brought to light by the AIDS crisis. Journal of Psychosocial Oncology, 4, pp. 15-25. Kliman, G. (1973) Facilitation of mourning during childhood, in: I. Gerber, A. Weiner, A. H. Kutscher et al. (eds), Perspectives on Bereavement (New York, Arno Press, New York Times), pp. 76-100. Martin J. (1988) Psychological consequences of AIDS-related bereavement among gay men. Journal of Clinical and Consulting Psychology, 56, pp. 856-862. Mays, V. M. and Cochran, S. D. (1987) Acquired immunodeficiency syndrome and black Americans: special psychosocial issues. Public Health Reports, 102, pp. 224-231. Michaels, D. and Levine, C. (1992) Estimates of the number of motherless youths orphaned by AIDS in the United States. Journal of the American Medical Association, 268, pp. 3456-3461. Miller, J. (1971) Children's reactions to the death of a parent. Journal of the American Psychoanalytical Association, 19, pp. 697-719. Morales, E. S. (1990) HIV infection and Hispanic gay and bisexual men. Hispanic Journal of Behavioral Sciences, 12, pp. 212-222. Nagera, H. (1970) Children's reactions to the death of important objects: a developmental approach, in: The Psychoanalytic Study of the Child, vol. 25 (New York, International Universities Press), pp. 360-400. Neugebauer, R., Rabkin, J. G., Williams, J. B. et al. (1992) Bereavement reactions among homosexual men experiencing multiple losses in the AIDS epidemic. American Journal of Psychiatry, 149, pp. 1374-1379. Nicholas, S. W. and Abrams, E. F. (1992) The 'silent' legacy of AIDS: children who survive their parents and siblings. Journal of the American Medical Association, 268, pp. 3478-3479. Osterweis, M., Solomon, F. and Green, M. (eds) (1984) Bereavement: Reactions, Consequences and Care (Washington, DC, National Academy Press). Raphael, B. (1982) The Anatomy of Bereavement (New York, Basic Books). Rinella, V. J. and Dubin, W. R. (1988) The hidden victims of AIDS: healthcare workers and families. Psychiatric Hospital, 19, pp. 115-120. Rosenthal, P. A. (1980) Short-term family therapy and pathological grief resolution with children and adolescents. Family Process, 19, pp. 151-159. Rutter, M. (1966) Children of Sick Parents (London, Oxford University Press). Rutter, M. (1979) Protective factors in children's responses to stress and disadvantage, in: M. W. Kent and J. E. Rolf (eds), Primary Prevention in Psychopathologyi, vol. 3, Social Competence in Children (Hanover, NH, University Press of New England), pp. 49-74. Rutter, M. (1983) Stress, coping and development: some issues and some questions, in: N. Garmezy and M. Rutter (eds), Stress, Coping and Development in Children (New York, McGraw-Hill), pp. 1-41. Schaefer, D. and Lyons, C. (1986) How Do We Tell the Children? (New York, Newmarket Press). Sekaer, C. (1987) Toward a definition of childhood mourning. American Journal of Psychotherapy, 41, pp. 201-219. Siegel, K. and Freund, B. (1994) Parental loss and latency age children, in: B. O. Dane and C. Levine (eds), AIDS and the New Orphans: Coping with Death (Westport, CT, Greenwood Press). Siegel, K., Mesagno, F. and Christ, G. (1990) Parent guidance prevention program for bereaved children. American Journal of Orthopsychiatry, 60, pp. 168-175.

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INDEX

Note: Most references are to HIV/AIDS, which is therefore omitted as a qualifier. action coping 80, 81, 84, 87, 88 adoption 232, 236-7 African Americans and the family 126, 127, 131, 135 and the issue of homosexuality 126 psychological adaptation to sexually acquired HIV 125-35 social support and psychological well-being xxii-xxiii AIDS Coalition of Coastal Texas 253 AIDS' IMPACT: Biopsychosocial Aspects of HIV Infection (Brighton, 1994) 169 AIDS service organizations 62, 68 AIDS support groups 48, 97 alcohol support groups 47, 51, 93 anal sex 160, 161, 165, 175, 178-81, 185 ANOVA (univariate analysis of variance) 33, 82,83,111 anxiety, see psychological distress asymmetric couples 52, 53, 54 Beck Depression Inventory 128 bereavement 45, 169-70 childhood 262-9 'bereavement overload' 264 bisexuality African American men and 133 choice of significant others 28 looking for new relationships 47, 48 Bonferonni adjusted alpha 82 Brief Symptom Inventory (BSI) 80, 81, 84-5, 88, 147, 169, 170-1, 173 brothers, less aware and supportive than sisters 145, 172 'buddy'system 63, 161,244

carers barriers to care 116-20 carers' burden and adjustment to HIV 62, 74-89 of children born to HIV-infected mothers 229-37 coping strategies 76, 77, 80-1, 86-7, 109 counselling of 65 demographic variables 77, 79, 81, 82 emotional support by 62, 63, 68-9, 88, 114, 115-16 gender 75, 83-4 HIV-positive 62 and orphans in Zimbabwe 209-10, 211,215, 217-18 and the patient's illness stage 76, 77, 81-3 practical help by 62, 63, 88 primary caretakers of children with HIVinfected mothers 229-37 psychological distress 83, 88, 109 relationship between patient and carer xxii, 64-5, 66, 70, 76, 77, 81, 82, 86, 87 and support services 62, 65, 66, 68—72 welfare of xxii, xxiii Carer's Problem Checklist (Carer's PC) 79, 81-4 case management 64, 66, 69 CDC, see Centers for Disease Control and Prevention celibacy 45-6, 48, 55 Centers for Disease Control and Prevention (CDC) 229, 230 Central Africa 150,155,221 child protection service agencies 236 Child Welfare Administration, New York 236-7

274

INDEX

children bereavement xxiv, 262-9 care of children born to HIV-infected mothers 229-37 custody of 268 infected with HIV 238-49 orphaned xxi, xxiii-xxiv, 14, 155, 203-18, 221-7 parents with HIV and children's emotional needs 251-60 ofaPWA 118 collectivism 29, 30 'coming out' 134-5 communication, Hispanic women and 187-99 community services xxiv, 243-4 conception 160 condom use xxiii, 48, 53, 54, 152, 154, 156-7, 160-5, 175, 179, 180,181,189, 190, 192, 194-9 confidence intervals (CI) 152 contraception 160 control coping 80-1 coping 42, 76, 77, 80-1, 83-4, 86-8, 109, 125, 127, 172,185, 214-15, 217, 227 Coping Strategies Device 80-1 counselling and AIDS service organizations 62, 106 of carers 65 and chronic/life-threatening illnesses 169 prevention of heterosexual HIV transmission through couple counselling 159—67 programme in Tanzania 15-26 of PWAs 66, 159 tailoring to specific needs 38 in Uganda 156, 157 Cronbach's alpha 79, 191 depression, see psychological distress disclosure of HIV/AIDS status xxi, 3-12 consequences of 9-10,11-12 ethnic differences in 29, 34-8 family reactions 146 interpersonal consequences of 4, 5 and negotiating sexual relations 49-52, 56 patterns of xxii, 3-4 reasons for 3, 31, 37 and the severity of one's disease 28-9, 37, 172

and sociodemographic variables 8 and symptomatic status 3-4, 8 and time since diagnosis and 3-6, 8, 9, 11, 28-9 to partners 23, 36 see also non-disclosure; significant others divorce 258 Dominican women 189, 190, 192, 194, 195-6, 198 drug support groups 47, 48, 51 drug users, and family of origin xxii Early Permanency Planning Project 236-7 East Africa 16,150,156,221 Eighth International Conference on AIDS (Amsterdam, 1992) 256 elders, in Tanzania 16, 17, 22, 24-5 emotional care 62, 65, 66, 68-71, 95-100, 114-16,121,169 Emotional and Existential Concerns Scale 79, 81, 82, 83 Epidemiological Catchment Area (EGA) study of psychiatric disorders 172 eroticization of the HIV-infected 51-2, 56 escape coping 81, 84, 87, 88 extended families xxiii-xxiv, 16, 22, 25, 204-5,214-15,217,259,269 Ftest 6 familism 29, 37 family of African American men 126, 127, 131, 135 awareness 171 black family decimation 146 of black HIV-seronegative partners 145, 146 care of the children of HIV-infected mothers 232, 236 and childhood bereavement due to AIDS 263, 265-9 of children infected with HIV 239-49 choice of significant others 21, 22, 25 the construct of xxi depression and material social support 131, 132 and disclosure of HIV status xxii, 114-15 extended xxiii-xxiv, 16, 22, 204-5, 259, 269 and familism 29 ofgaymen 112,115,119-20,121

INDEX

oflDUs 112, 115, 116,119-22 non-disclosure to 23, 119 parents with HIV and children's emotional needs 251-60 psychological well-being of xxi reaction to disclosure 146 support for heterosexual partners 141-7 support of 110, 112, 113, 127, 130, 132, 133, 170, 171 of white American males 127 family of affiliation xxi Family and Children's AIDS Network, Chicago 236-7 family clinics 245-6, 248, 249 Family Health Services Authority (FHSA) 243 family of origin xxi fatalism coping 81, 84, 88 fathers children and father's AIDS-related death 263 deaths in Sub-Saharan Africa 222-3, 225 disclosure of serostatus to 9-10, 11, 34, 114-15 disclosure of sexual orientation to 35 of HIV-infected children 245-6, 246 less aware and supportive than mothers 145, 172 non-disclosure to 8, 35, 36 as primary caretaker 232 FHSA (Family Health Services Authority) 243 Fisher's exact test 6, 9, 35, 143, 152 focus groups 177 foster care 232, 236, 237, 251, 258, 268 friendship, see significant others gay men and bereavement 262 choice of significant others 28 disclosing seropositivity 49-51 early quandaries after testing HIV-positive 45,46 and family of origin xxii helpful and unhelpful behaviours of loved ones 92-106 looking for new relationships 47, 48 rates of disclosure 29-30

275

reliance on friends and family for care (compared with IDUs) xxii, 109—23 sexual risk behaviour in 175-85 testing positive in the context of an existing relationship 52-5 gender of carers 75 and choice of significant other 20-5 gender differences and psychological distress 169-73 general practitioners (GPs) 240-1, 243-4, 248, 249 General Severity Index (GSI) 80-4, 171 generation, and choice of significant other 21, 24,25 genital infection 157 genital ulcer disease 155 global health rating 79, 81, 82, 83 Grandmas 244 haemophiliacs 238 health education 157 health status AIDS fatigue 54-5 the course of paediatric HIV 239 disease progression 61, 76, 135, 183-4, 245 fluctuations in 71 Kaposi's sarcoma 54-5 opportunistic infections 62, 63 relation to the carer's burden and adjustment 77, 83 and service use 71 health-status indices 81 healthcare system 109, 122 Heterosexual HIV Transmission Study (HATS) 170 heterosexuality disclosing seropositivity 53, 54 early quandaries after testing HIV-positive 45,46 increase in HIV cases 251 looking for new relationships 47, 48 prevention of HIV transmission through couple counselling 159—67 testing positive in the context of an existing relationship 49, 51-2 Hispanic men, multiple partners 187, 194 Hispanic women

276

INDEX

HIV-related communication and condom use xxiii, 187-99 multiple partners 195, 196,197 HIV-serodiscordant heterosexual couples family support for 141—7 in Uganda xxiii, 150-7 HIV/AIDS Surveillance project 229-30 homophobia 126 homosexuality, the issue in African American communities 126 hospital services mothers and xxiv paediatric HIV/AIDS services 238-49 hospitalization avoiding 62 of children infected with HIV 242-3, 246 costs of 62, 109 frequent use of 68 Instrumental Concerns Scale 79, 81, 82, 83 interpersonal coping 81 intravenous drug users (IDUs) HIV-infected mothers 232, 236, 268 and multiple loss of family members 264 reliance on friends and family for care (compared with gay men) 109-23 isolation and social stigma 62, 104, 122, 259 and bereavement 262, 263, 267, 269 and disclosure xxi and GPs 243, 248 and non-disclosure 28, 30 of orphans in Zimbabwe 211-12,216 in Tanzania 14, 16-17, 23, 25 Kaposi's sarcoma 54-5 Kenya 225 kugadza nhaka (Shona marriage custom) 214 Latino men AIDS incidence rate 29 cultural values 29, 30, 37 English-speaking 31, 32, 34, 35, 36, 38 and non-disclosure xxii, 12, 30, 33, 34, 36, 37-8 Spanish-speaking 31, 32, 34-8 Likert scales 252 London Lighthouse 244 lymphocitic interstitial pneumonia 247

McNemar's exact test 143 McNemar's matched analysis test 162 Malawi 225 Mantel-Haenszel tests 6, 8 masturbation 181 maternal antibodies 238 Medical Research Programme on AIDS (Uganda) 222 Mexican American women 189, 190, 192-6, 199-200 monogamy 157, 161, 164, 166 morality issue 41 in Tanzania 17, 22, 24 mortality rate of orphans in Africa 225-6 mothers care of children born to HIV-infected 229-37 deaths in Sub-Saharan Africa 221, 222-3, 225 disclosure of serostatus to 9-10, 11, 34 disclosure of sexual orientation to 35 helpful/unhelpful behaviour 105 of HIV-infected children 238, 241, 243, 245, 246, 247, 263 lack of custody plans for their children 268 more aware and supportive than fathers 145,172 non-disclosure to 35, 36 PWAasa 118 multidimensional scaling with normative sample 81 multiple partners 165, 187, 195, 196, 197 National Institutes of Health/National Institute of Allergy and Infectious Diseases (NIH/NIAID) 170 non-disclosure 9, 10, 11 Latino men and xxii, 12, 30, 33-8 reasons for 12, 23, 28-31, 35, 36, 37 and safer sex 55-6 and social support 28 to family 23,119 to partners 36 white American men and 37-8 objective social integration 130 open-mouth kissing 178 optimism coping 81, 87

INDEX

oral sex 175, 178-9, 180 orphanhood xxi, xxiii—xxiv, 14, 155, 203-18, 221-7,251,259 and bereavement 262—9 paediatric HIV/AIDS services 238-49 parents accessibility for disclosure 32, 34 childhood bereavement due to AIDS 262-9 and disclosure 9-10, 11, 34 of HIV-infected children 240-9 non-disclosure to 35—6, 37 parental deaths in Sub-Saharan Africa 221, 222-3,225, 236 parental deaths in Zimbabwe 203-18 parents with HIV and the children's emotional needs 251-60 unhelpful behaviour 105 partners as carers 65,70,76,82, 114 choice of xxi disclosure to 23, 36 family support for heterosexual partners 141-7 non-disclosure to 36 protecting each other 183, 185 psychological problems 76 risk of acquiring the disease 77 serodiscordant heterosexual xxiii and sexual risk behaviour 175, 180 Patient's Problem Checklist (Patient's PC) 79, 81 Pearson correlations 84-5 Pearson's chi square 111 Pearson's 72 test 143,152,162 Pneumocystis carinii pneumonia 247 polygamy 151, 152 polymerase chain reaction test 238 Positively Women 244 practical help 62, 63, 65, 66, 68-71, 88, 121 prevention through couple counselling 159-67 in Uganda xxiii, 152, 154, 156-7 primary care xxiv, 246 Profile of Mood States (POMS) 128 prostitutes (Nairobi) 157 psychological adaptation to sexually acquired HIV 125-35

277

psychological distress and the carer 83, 88, 109 gender differences in 169—73 high risk for those with HIV 132 of loved ones 92 and non-disclosure 11, 23 of partners 76 and problem-focused coping 88 psychometric tests 42 and social support 3, 15, 38 and support services 71 women with 171, 172, 173 psychological well-being, social support and xxii-xxiii, 125-35 psychometric tests 42 Psychosocial Adjustment to Illness Scale Self-Report (PAIS-SR) 80-5 Puerto Rican men 177,178,180-1 Puerto Rican women 189, 190, 192-6, 198 rate ratios 152 role-play 160 safer sex after testing positive 48, 53, 54 barriers to xxiii, 176, 179-81, 183 counselling and 160,167 and disclosure 3 facilitators to 176,181-2 and Hispanic women 188, 189, 197 and non-disclosure 55—6 problems 53-4, 56, 161 SAS statistical packages 143 screening 247-8 self-help support groups 132 serodiscordant male couples, sexual risk behaviour in 175-85 sexual abstinence xxiii, 160—5, 189 and serodiscordant heterosexual couples xxiii sexual behaviour, Uganda study 150—7 sexual orientation assessment of 32 and disclosure of HIV infection 36-7 disclosure of 30, 35 and families of African American men 126 non-disclosure of 29 significant other's awareness of 28, 30, 32

278

INDEX

sexual relations effect of the illness 54-5 negotiations after testing positive 41-56 testing positive in the context of an existing relationship 52-5, 56 testing positive for those not in couple relationships 44-52, 55-6 sexual risk behaviour, in male couples xxiii, 175-85 sexually transmitted disease (STD) symptomatology 153, 154-5,156, 157 siblings separation after parent's death 268 sibling-headed households 215-16, 217, 268, 269 significant others choice of 14-26, 28 disclosure to 3, 4, 8-12 emotional support 95-100 helpful and unhelpful behaviours 92-106 non-disclosure to 30 simpatia 29, 37 sisters, more aware and supportive than brothers 145, 172 social dynamics of HIV transmission 150-7 social support and disclosure xxi, 3 from the family 130, 132, 133 helpful behaviours 92, 95-100, 104, 105-6 nature of 135, 172 and non-disclosure 28 and psychological adaptation to sexually acquired HIV 125-35 and psychological distress 3, 15, 28, 38 and psychological well-being xxii-xxiii, 125-35 reliance by gay men and IDUs on 109-23 unhelpful behaviours 92, 100-5 see also carers; significant others social support questionnaire (O'Brien and Wortman) 128 socioeconomic status (SES) factors 126-7, 134 Spearman correlations 128 StatXact 143 STD, see sexually transmitted disease stigma, see isolation and social stigma stress, see psychological distress

Sub-Saharan Africa, orphanhood in 221-7 support services 61-72 and carers 62, 65, 66, 68-72 and case management 66, 69 emotional support 62, 65, 66, 68-71 factors relating to service use 66-8, 70—1 high rate of use 69 practical support 62, 65, 66, 68-71 unmet need 68-70 symmetric couples 52, 53, 54 'synchrony' between carer and patient xxii, 86, 89 T-tests 84-5 Tanzania 157 concept of disease 17 counselling programme 15-26 and disclosure of HIV status xxii and negative social impact 14 Terrence Higgins Trust 244 testing for HIV/AIDS confidentiality 18, 22 counselling in Tanzania 18-19, 22 efforts to promote (Uganda) 156 informed consent 18, 22 therapy, see counselling UCLA Loneliness Inventory 128 Uganda orphaned children xxiv, 203, 222, 225 serodiscordant heterosexual couples xxiii, 150-7 United States growth of the the HIV pandemic in ethnic minority populations 29 increase in women with HIV disease 187, 251,256 Validation of the Problem Checklists 79 viral antigens/enzymatic activity 238 virus culture 238 voluntary support groups 244 white American males and disclosure 30, 33, 34, 35 and non-disclosure 38 psychological adaptation to sexually acquired HIV 125-35

INDEX

social support and psychological well-being xxii-xxiii WHO, see World Health Organization widowhood 45 wife inheritance 214 women increase in women with HIV disease (US) 187, 251, 256 psychological distress levels 171, 172, 173 World Health Organization (WHO) 15, 203 Z-transformed correlations 128-9 Zimbabwe

279

characteristics of families of children orphaned due to AIDS 210 discrimination against orphans 211,216 extended family in 204-5, 214-15, 217-18 HIV epidemic in 204 orphaned children xxiii—xxiv, 203-18 parental deaths 203-18 rural-urban AIDS comparison 213-14 sibling-headed households 215-16 social factors, stigmatization and discrimination 210—12 Zimbabwe Inter-Censal Demographic Survey 208