Women and Aids: Coping and Care (Aids Prevention and Mental Health)

Women and AIDS Coping and Care

AIDS Prevention and Mental Health Series Editors: David G. Ostrow, M.D., Ph.D., and Jeffrey A, Kelly, Ph.D. Medical College of Wisconsin Milwaukee, Wisconsin

Methodological Issues in AIDS Behavioral Research Edited by David G. Ostrow, M.D., Ph.D., and Ronald C. Kessler, Ph.D. Preventing AIDS: Theories and Methods of Behavioral Interventions Edited by Ralph J. DiClemente, Ph.D., and John L. Peterson, Ph.D. Women and AIDS: Coping and Care Edited by Ann O’Leary, Ph.D., and Loretta Sweet Jemmott, R.N., Ph.D., F.A.A.N. Women at Risk: Issues in the Primary Prevention of AIDS Edited by Ann O’Leary, Ph.D., and Loretta Sweet Jemmott, R.N., Ph.D.

A Continuation Order Plan is available for this series. A continuation order will bring delivery o f each new volume immediately upon publication. Volumes are billed only upon actual shipment. For further information please contact the publisher.

Women and AIDS Coping and Care Edited by

Ann O’Leary, Ph.D. Rutgers University, Busch Campus New Brunswick, New Jersey

and

Loretta Sweet Jemmott, R.N., Ph.D., F.A.A.N. University of Pennsylvania Philadelphia, Pennsylvania

Kluwer Academic Publishers New York / Boston / Dordrecht / London / Moscow

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Contributors Stacy N. Broun Vivian Brown

•

3609 Cedar Springs Road, Dallas, Texas 75219

• PROTOTYPES, Culver City, California 90230

Michael Conard • Department of Architecture, Columbia University, New York, New York 10025 Helen L. Coons sylvania19107

• The Health Federation of Philadelphia, Philadelphia, Penn-

Anke A. Ehrhardt • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, and Department of Psychiatry, Columbia University, New York, New York 10032 Kathleen A. Ethier • Department of Psychology, Yale University, New Haven, Connecticut 06520-8205 Barbara Greenberg • Department of Epidemiology and Social Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York 10467 Jeannette R. Ickovics • Departments of Psychology and Internal Medicine, Yale University, New Haven, Connecticut 06520-8205 John B. Jemmott III • Department of Psychology, Princeton University, Princeton, New Jersey 08554 Sharon Rae Jenkins • Department of Psychology, University of North Texas, Denton, Texas 76203-6587 Claude Ann Mellins • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, and Department of Psychiatry, Columbia University, New York, New York 10032 Sutherland Miller • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, New York, 10032 v

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Contributors

Suzanne Miller • Division of Population Science, Fox Chase Cancer Center, Philadelphia, Pennsylvania 19107 Janet S. Moore • Division of HIV/AIDS Prevention, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia 30333 Debra A. Murphy • Department of Psychiatry, Division of Social and Community Psychiatry, University of California, Los Angeles, California 90024 Lucile Newman • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, New York, New York 10032; and Department of Community Health, Brown University, Providence, Rhode Island 02912 Judith Rodin • Departments of Psychology and Internal Medicine, Yale University, New Haven, Connecticut 06520-8205; present address: Office of the President, 121 College Hall, University of Pennsylvania, Philadelphia, Pennsylvania 19104-6380 Mary Jane Rotheram-Borus • Department of Psychiatry, Division of Social and Community Psychiatry, University of California, Los Angeles, California 90024 Paula Schuman • Division of Infectious Diseases, Department of Internal Medicine, Wayne State University School of Medicine, Detroit, Michigan 48201 Dawn K. Smith • Division of HIV/AIDS Prevention, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia 30333 Liza Solomon • Department of Epidemiology, School of Hygiene and Public Health, Johns Hopkins University, Baltimore, Maryland 21205 Michael Stein • Division of General Internal Medicine, Rhode Island Hospital, Providence, Rhode Island 02903 Dora Warren • Division of Reproductive Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia 30333 Gloria Weissman Maryland 20857

• Health Resources and Services Administration, Rockville,

Preface Women were among the first documented cases of AIDS (Corea, 1992; Shilts, 1987), and have continued to become infected, develop AIDS, and die, throughout the course of this pandemic. Women have consistently constituted more than half of those infected with HIV globally, while in the United States their representation among those struck by AIDS has been increasing dramatically in recent years; more new infections occur among women than men at the present time. However, until recently, they have received little attention in research, service, or policy efforts (Corea, 1992). Public discourse about women with HIV/AIDS has often been stigmatizing, painting them as “vectors” of infection to men and children, and ignoring their own health concerns and well-being. However, there has been growing recognition of the fact that HIV and AIDS affect women in many unique ways, medically, psychologically, and socially. This book is an effort to bring together findings from research studies, both recently completed and ongoing; insights from those who have been providing health and mental health services to HIV-infected women in communities; and policy recommendations from specialists in women and HIV infection. Some of the authors have been pioneers in their work with women affected by HIV, others are eminent researchers in health, women’s studies, and HIV/AIDS. Each chapter in this volume provides a perspective unique to the topic and the orientation of its authors. While there is, inevitably, some overlap among the issues discussed by different authors, we believe that each chapter provides its own way of examining its subject. The first chapter provides a comprehensive review of the epidemiology, disease processes, and treatment of AIDS in women. It will serve as a useful resource for the health care provider—as up to date as it is possible to be in published material—and will also bring the medical background necessary for understanding some of the psychosocial aspects discussed in other chapters to those unfamiliar with biomedical aspects of HIV. The second chapter, by Jenkins and Coons, discusses stress and coping processes relevant to HIV-infected women’s lives. Unfortunately, there is a paucity of high-quality, available research on these issues; however, the authors present a discussion of the context of HIV in the lives of the disadvantaged women it disproportionately affects; a qualitative description of the types of stresses that vii

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accompany each stage in the course of HIV disease in women; and a review of some related research literatures, such as those concerning women’s adjustment to chronic and terminal illness generally and AIDS stress and coping research in other populations. This chapter will stimulate many ideas for research among readers interested in advancing the still-nascent field of women’s adaptation to HIV/AIDS. Adolescent women, a group greatly affected by HIV/AIDS, are the focus of the third chapter. After reviewing the nature and scope of the problem of HIV infection among adolescent women, Rotheram-Borus and colleagues describe their ongoing research in which they have developed and are delivering a psychosocial intervention for HIV-infected youth. The chapter outlines the topic areas and skill domains addressed in the multifaceted intervention; these include reducing sexual behavior that causes risk of transmission, avoiding substance use, developing “resiliency,” and enhancing quality of life. Access to needed physical and mental health care services is problematic for many of the disadvantaged women most affected by HIV. However, for the HIVinfected woman who is addicted to drugs, these are more frequently compounded by homelessness, dire concerns about maintaining or regaining custody of children, social isolation and alienation, and vulnerability to violence. Further, their health is additionally compromised by the use of drugs, both present and past. Accessing drug treatment services—for many the only viable way to reduce HIV risk—is more difficult for HIV-infected women than either uninfected women or other infected populations. The chapter by Weissman and Brown discusses these issues in the context of a large national HRSA/NIDA research demonstration project that was directed by Dr. Weissman. Mellins and colleagues present results of a qualitative study of the structures of families affected by pediatric AIDS, demonstrating the great complexity of configurations that occur among these families. They propose the term “selective kin” to refer to all individuals central to the well-being of children and their caregivers. Family structure is but one aspect of the complexity and variability that make it difficult to conduct psychosocial AIDS research and that make interpretation of findings problematic; others include the heterogeneity of disease processes and the varying cultural, ethnic, and behavioral backgrounds of those affected. This chapter also describes stressors reported by participants and policy implications of their proposed redefinition of family. Stacy Broun’s chapter is a moving and inspiring testament to the strength of women with HIV/AIDS and to the value—to both parties—of the provision of mental health services to them. It is based on her many years of experience in this role, and will be particularly useful to anyone who engages in counseling, advocacy, or friendship to women with AIDS. It also personalizes many of the issues discussed by Jenkins and Coons. Challenges faced by women at different stages in the disease course are discussed and include antibody testing, behavioral change, treatment decisions, and rational suicide.

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Jemmott and Miller present a comprehensive review of a topic that has been of central concern to feminists throughout the AIDS epidemic: reproductive decision-making by HIV-infected women (Amaro, 1993; Arras, 1990). While many such women desire pregnancy, for a variety of reasons—some directly related to their enhanced awareness of their mortality—historically they have been stigmatized and pressured into pregnancy termination (Arras, 1990; Corea, 1992) despite the fact that most children are born uninfected. The recent finding that prenatal use of the antiviral drug zidovudine brings the transmission rate down to eight percent has resulted in a recommendation for universal antibody testing of pregnant women by the Centers for Disease Control and Prevention (CDC), and has alleviated concerns about coercion. This chapter reviews empirical data regarding the relative frequencies of pregnancy and pregnancy termination among women, using meta-analysis to demonstrate that HIV+ women do terminate pregnancies more often than HIV– women. The authors also present a psychological model for reproductive decision making by HIV-infected women. The CDC’s HIV Epidemiology Research (HER) Study is a large-scale longitudinal investigation of women infected with HIV and a comparison group of HIV– women. The chapter by Smith, Warren, and colleagues describes the study design and participants along with some early results from the biomedical, health care, behavioral, and psychosocial components of the study. This effort, along with the closely coordinated NIH/NIAID-funded sister study, the Women’s HIV Interagency Study, are beginning to provide the first substantive empirical data regarding issues discussed throughout this volume. The final chapter, by Ethier, Ickovics, and Rodin, highlights some key aspects of current public policy as they affect women with HIV/AIDS, and makes recommendations for policy modifications to meet women’s unique needs. HIV prevention, counseling and testing, partner notification, access to care, and women’s inclusion in research are among the topics considered. The potential costs and benefits of numerous policy issues, many of them highly controversial, will be extremely useful for those readers who are in positions to inform and guide policy decisions and will constitute provocative reading for anyone interested in women’s health, HIV/AIDS, or the social and philosophical underpinnings of public policy formation. The AIDS epidemic in the United States and elsewhere has unfolded against a sociopolitical backdrop of disenfranchisement of the poor, the feminization of poverty, and stigmatization of AIDS and those who suffer its consequences. This volume goes to press at a time when the victims of poverty are more and more often blamed for their condition, yet we live in a society that fails to provide opportunities for disadvantaged men and women, especially those of minority ethnicity, to be adequately educated and to gain dignified employment and ability to contribute to society that every human being desires. Poverty and racism are major determinants of health generally (Adler, Boyce, Chesney, Folkman, & Syme,

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1993) and contribute to the persistence and severity of the AIDS epidemic in many ways (see Aral & Wasserheit, 1995). Further, financial resources to combat it have been grossly inadequate throughout the course of the epidemic, particularly to meet the needs of women. Yet despite these overwhelming circumstances, many courageous women fight persistently to survive and to maintain a high quality of life for themselves and their families. Many other women and men work tirelessly to alleviate the suffering that this disease brings to those infected with the virus and to their loved ones. All of us who care about these issues must work, not only to assist individuals in need, but also to transform our society into one that is responsive to the needs of all of its citizens, and grants to each the right to health that is intrinsic to the right to life. Ann O’Leary Loretta Sweet Jemmott

REFERENCES Adler, N. E., Boyce, W. T., Chesney, M. A., Folkman, S., & Syme, S. L. (1993). Socioeconomic inequalities in health: No easy solution. Journal of the American Medical Association, 269, 31403145. Amaro, H. (1993). Reproductive choice in the age of AIDS: Policy and counseling issues. In C. Squire (Ed.), Women and AIDS: Psychological perspectives (pp. 20-41).Beverly Hills: Sage. Aral, S. O., & Wasserheit, J. N. (1995). Interactions among HIV, other sexually transmitted diseases, socioeconomic status, and poverty in women. In A. O’Leary & L. S. Jemmott (Eds.), Women at risk: Issues in the primary prevention of AIDS (pp. 13-41).New York: Plenum Press. Arras, J. D. (1990). AIDS and reproductive decisions: Having children in fear and trembling. Milbank Quarterly, 68, 353-382. Corea, G. (1992). The invisible epidemic: The story of women and AIDS. New York: HarperCollins. Shilts, R. (1987). And the band played on. New York: Penguin Books.

Contents Chapter 1. Epidemiology, Manifestations, and Treatment of HIV Infection in Women . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1

Dawn K. Smith and Janet S. Moore The Epidemiology of HIV/AIDS in Women . . . . . . . . . . . . . . . . . . . . . . . Extent of the Epidemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Characteristics of Women with HIV Disease . . . . . . . . . . . . . . . . . . Modes of Exposure of Women to HIV . . . . . . . . . . . . . . . . . . . . . . . Manifestations of HIV Infection in Women . . . . . . . . . . . . . . . . . . . . . . . Disease Manifestations: Non-AIDS-Defining Conditions . . . . . . . . . Disease Manifestations: AIDS-Defining Conditions . . . . . . . . . . . . . Disease Course: Rate of Progression . . . . . . . . . . . . . . . . . . . . . . . . . Disease Course: Survival . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Health Care Issues for Women with HIV Infection . . . . . . . . . . . . . . . . . Identification of HIV Infection in Women . . . . . . . . . . . . . . . . . . . . . Access to and Use of Health Care Services . . . . . . . . . . . . . . . . . . . Treatment of HIV Infection in Women . . . . . . . . . . . . . . . . . . . . . . . Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1 1 3 4 7 7 10 11 12 13 14 16 18 22 24

Chapter 2. Psychosocial Stress and Adaptation Processes for Women Coping with HIV/AIDS . . . . . . . . . . . . . . . . . . . . .

33

Sharon Rae Jenkins and Helen L. Coons Women, Gay Men, and HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Psychosocial Context of HIV in Women’s Lives . . . . . . . . . . . . . . . Women Coping with Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stressors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Coping . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Women Confronting HIV Infection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi

34 39 42 43 43 46 48

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Schemas of Psychological Aspects of HIV Disease Progression . . . HIV Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Receiving a Seropositive Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . Progression to AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Studies of Stress, Coping, Social Support. and Adaptation . . . . . . . . . . . Studies of Both Genders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Studies of Women . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Future Research and Treatment Priorities . . . . . . . . . . . . . . . . . . . . . . . . . Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

48 49 53 59 63 63 65 69 69 71 72

Chapter 3. Intervening with Adolescent Girls Living with HIV . . . .

87

Mary Jane Rotheram-Borus. Debra A. Murphy. and Sutherland Miller Epidemiology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Identification of HIV+ Youths . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Adaptation to Living with HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Intervention Context and Components . . . . . . . . . . . . . . . . . . . . . . . . . . . . Content of the Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

87 91 94 96 99 103 104

Chapter 4. Drug-Using Women and HIV: Access to Care and Treatment Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

109

Gloria Weissman and Vivian Brown Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HRSA/NIDA Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sample Characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HIV Risk Behaviors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HIV Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Service Utilization and Access Barriers . . . . . . . . . . . . . . . . . . . . . . . Overcoming Barriers to Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Outreach as the First Step in Access . . . . . . . . . . . . . . . . . . . . . . . . . The Role of Substance Abuse Treatment . . . . . . . . . . . . . . . . . . . . . Care Coordination and Case Management . . . . . . . . . . . . . . . . . . . . . HIV Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Need for Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

109 111 112 112 113 113 114 115 115 116 117 118

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Current Research Priorities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

119 119 120

Chapter 5. “Selective Kin”: Defining the Caregivers and Families of Children with HIV Disease . . . . . . . . . . . . . . . . . . . . . . .

123

Claude Ann Mellins, Anke A. Ehrhardt, Lucile Newman, and Michael Conard Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Selective Kin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Family Studies Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Selective Kin Configurations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Selective Kin Configurations. Stress. and Coping . . . . . . . . . . . . . . . Factors Influencing “Selective Kin” Structures . . . . . . . . . . . . . . . . . . . . Ethnicity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Substance Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Homosexuality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HIV Orphans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Policy Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

123 125 126 126 127 135 139 139 140 141 141 142 143 146 147 147

Chapter 6. Clinical and Psychosocial Issues of Women with HIV/AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

151

Stacy N. Broun Safe-Sex Behavior for Women . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lesbians Can Get AIDS? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Denial about Women and AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Cultural and Ethnospecific Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Women as Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatment Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatment across the HIV Spectrum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . General Considerations in Treatment of HIV Patients . . . . . . . . . . . . . . . Treatment Goals over the Course of HIV Disease . . . . . . . . . . . . . . . . . . Getting Tested . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

152 153 154 154 155 156 157 157 161 161

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Early Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Behavior Changes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Middle Stages of HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Later Stages of the Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Rational Suicide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Rewards of This Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

161 162 162 163 164 165 165

Chapter 7. Women’s Reproductive Decisions in the Context of HIV Infection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

167

John B. Jemmott III and Suzanne Miller Women, Children, and HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HIV Serostatus and Reproductive Behavior . . . . . . . . . . . . . . . . . . . . . . . HIV Serostatus and Pregnancy Decisions . . . . . . . . . . . . . . . . . . . . . HIV Serostatus and Pregnancy Termination and Continuation . . . . . Social-Psychological Factors and Reproductive Decisions in the Context of HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Chapter 8. The Design, Participants, and Selected Early Findings of the HIV Epidemiology Research (HER) Study: A Prospective Cohort Study of the Impact of HIV Infection on the Health of American Women . . . . . . . . . .

168 170 170 172 175 179 182

185

Dawn K. Smith, Dora Warren, Liza Solomon, Paula Schuman, Michael Stein, Barbara Greenberg, and Janet S. Moore for the HER Study Group Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Recruitment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Core Visit Protocols . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Core Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Physical Exam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Specimen/Test Data Collection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Psychosocial Interview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . CD4 <100 Visits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Participant Safety and Confidentiality . . . . . . . . . . . . . . . . . . . . . . . . Medical Record Abstraction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Quality Control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

185 187 189 189 190 190 191 191 192 192 192

Contents

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Data Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sample Characteristics and Early Findings . . . . . . . . . . . . . . . . . . . . . . . . Demographics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Early Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Biomedical Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Health Care Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Behavioral and Psychosocial Findings . . . . . . . . . . . . . . . . . . . . . . . . Sexual Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Drug Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Future Plans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

193 193 193 195 195 196 197 199 199 200 201 202

Chapter 9. For Whose Benefit? Women and AIDS Public Policy . . .

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Kathleen A. Ethier, Jeannette R. Ickovics, and Judith Rodin HIV Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HIV Counseling and Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Access to Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Coordinated Services and Quality of Care . . . . . . . . . . . . . . . . . . . . Women’s Inclusion in Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Access to Clinical Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

209 211 216 218 220 221 223 224

About the Authors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Epidemiology, Manifestations, and Treatment of HIV Infection in Women Dawn K. Smith and Janet S. Moore Data on rates of the acquired immunodeficiency syndrome (AIDS) in the United States suggest an alarming increase in the number of women affected. Much of what is known about HIV and AIDS, however, has been learned from studies of those first affected by the AIDS epidemic, namely, homosexual/bisexual men and male injection drug users. Although the disease course of HIV infection is similar in men and women, an accumulating literature suggests that both the profile of the epidemic among women and the treatment needs of women differ from those of men. Thus, findings from these earlier studies may not generalize to nor fully describe HIV disease in women. This chapter summarizes data on the epidemiology of HIV and AIDS in women in the United States and describes the available information on medical manifestations of and treatment considerations for HIV infection in women.

THE EPIDEMIOLOGY OF HIV/AIDS IN WOMEN Extent of the Epidemic Women are increasingly represented among AIDS cases in the United States. As of June 1995, 64,822 cases of AIDS in women had been reported to the Centers for Disease Control and Prevention; these cases account for 14% of all adults reported with AIDS in the United States and 18% of adult cases reported from June DAWN K. SMlTH and JANET S. MOORE • Division of HIV/AIDS Prevention, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, GA 30333. Women and AIDS: Coping and Cure, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 1

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1994 through June 1995 (CDC, 1995). The rate of increase of AIDS among women has been very rapid. Half (52%) of all cases of AIDS in women were reported during 1992 and 1993 alone (CDC, 1995). At the beginning of 1993, the AIDS case definition expanded to include those cases meeting the 1987 definition and HIVinfected persons with pulmonary tuberculosis, recurrent bacterial pneumonia, invasive cervical cancer, or CD4+ lymphocyte counts <200 cells/µ1. The addition of new AIDS-defining conditions caused a large increase in the numbers of reported AIDS cases diagnosed in both women and men; with 30% of AIDS cases diagnosed in 1992, and 55% of cases diagnosed in 1993, meeting only the 1993 expanded definition. Even so, between 1992 and 1993, the rate of increase of AIDS among women (151.3%) was a third greater than that among men (104.9%) (CDC, 1995). AIDS case projections indicate that women will account for an increasing percentage of cases during the next several years (CDC, 1992a). This projection is borne out in surveillance data from 26 states with confidential HIV reporting. In these states, women accounted for 27% of adults reported in 1994 with HIV infection (but not AIDS), while nationwide they accounted for 18% of adults reported in 1994 with AIDS (CDC, 1995). Thus, HIV/AIDS surveillance data support the conclusion that AIDS case reports underestimate the proportion of women living with HIV infection. Mortality rates clearly demonstrate the increasing impact of AIDS on women. As early as 1992, AIDS and HIV-related disease was the fourth leading cause of death among women 25 to 44 years of age in the United States (CDC, 1993a) and accounted for 7% of all deaths nationwide among women in this age group. In 1990, in nine cities (New Haven and Stamford, CT; New York City; Jersey City, Newark, and Paterson, NJ; Fort Lauderdale and Miami, FL; and Baltimore, MD), HIV disease was the leading cause of death in 1991 among women of reproductive age (Selik, Chu, & Buehler, 1993). In 1993, HIV had remained the fourth leading cause of death for women aged 25-44overall (8.4% of deaths) but was the leading cause of death for black women in that age group (17% of deaths) (National Center for Health Statistics, 1994). Because analyses of mortality rates are based on the cause of death listed on death certificates, the impact of HIV infection on mortality rates among women is probably greater than current statistics indicate. Previous studies suggest that among women 25-44 years old, deaths for which HIV infection is listed as the underlying cause represent only 55-80%of HIV-related deaths among women in this age group (Buehler, Hanson, & Chu, 1992). Because the time from HIV infection to the development of AIDS can extend for 10 years or longer, reported AIDS cases do not provide a complete picture of the extent of the epidemic. A number of studies have attempted to estimate the number of women who are HIV-infected. These seroprevalence studies are essential for understanding the extent and characteristics of the epidemic. Much of the information on seroprevalence rates among women has been collected from studies of

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childbearing women. A large ongoing survey of childbearing women in 38 states and Washington, DC reports that approximately 1.7 per 1000 women who gave birth between 1989 and 1992 were infected with HIV, with the highest seroprevalence rates found in New York, Washington, DC, New Jersey, and Florida (CDC, 1994a; Gwinn, Wasser, Fleming, Karon, & Petersen, 1993). Other seroprevalence studies have confirmed the high rates of infection among women in specific geographic locations. For example, a study conducted from 1987 to 1989 found that in certain areas of New York City, one out of 22 childbearing women had HIV (Novick et al., 1991). Studies of seroprevalence rates among women attending inner-city hospital family planning, abortion, and prenatal clinics found rates ranging from 0 to 2.3%, with rates over 1% in clinics on the East Coast and in Puerto Rico (CDC, 1994a; Sweeney, Onorato, Allen, Byers, & The Field Services Branch, 1992). HIV seroprevalence surveys in clinics for treatment of sexually transmitted diseases (STDs) report a median rate of 0.9% for women with no history of injection drug use; however, rates as high as 8.5, 5.8, and 5.2% have been reported in STD clinics in San Juan, Puerto Rico, Miami, and New York City, respectively (CDC, 1994a). Characteristics of Women with HIV Disease Although only a small proportion of women infected with HIV have developed AIDS, most descriptive data on women with HIV disease are from surveillance studies of the subset of HIV-infected persons diagnosed with AIDS. Thus, the data presented here refer to the reported demographic characteristics of women with AIDS. Seroprevalence studies of HIV-infected women, however, indicate that those who are HIV-infected but have not developed AIDS, have a similar epidemiologic profile. Demographic data on women with AIDS indicate that most are young, minority women living in large metropolitan areas. Approximately one-fourth of women with AIDS are 20-29years of age, and 84% are between 15 and 44 years old (CDC, 1995). Because AIDS often does not appear until several years after infection, many of these women may have been infected as adolescents. The majority of women with AIDS are black (54%) or Hispanic (20%); cumulative incidence rates are 15 times higher among black women and 7 times higher among Hispanic women than among white women (CDC, 1993b, 1995). Geographically, most AIDS cases in women have been reported from large metropolitan areas in the Northeast (CDC, 1993b); however, the numbers of AIDS cases reported from southern states have increased steadily (CDC, 1992a). In 1992, ten metropolitan areas in the Northeast, the South, and Puerto Rico accounted for more than half (51.5%) of reported AIDS cases in women (CDC, 1993b). Recently, growing numbers of HIV and AIDS cases in women have been reported from small, rural communities, particularly in southeastern states, reflecting another demographic

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change in the epidemic (Ellerbrock, Bush, Chamberland, & Oxtoby, 1991; Wasser, Gwinn, & Fleming, 1993). Modes of Exposure of Women to HIV Injection Drug Use

Approximately 48% of women with AIDS have a history of injection drug use and are assumed to have been infected with HIV through this route (CDC, 1995). Only 22% of AIDS cases among men are associated with injection drug use (CDC, 1995); however, among male and female injection drug users (IDUs) in treatment, similar rates of HIV infection have been reported (CDC, 1994a; Hahn, Onorato, Jones, & Doughtery, 1989). Seropositivity rates among women entering drug treatment programs range from 0 to 38.6%, with a median of 6.3% (CDC, 1994a). Reliable estimates are not available on rates of HIV infection among female IDUs who do not seek treatment. The highest rates of HIV infection among women have been detected among female IDUs in the Northeast and Puerto Rico (CDC, 1994a; Hahn et al., 1989); although heterosexual contact has become the predominant mode of HIV transmission among women in some regions of the country, injection drug use continues to be the primary route in the Northeast (CDC, 1993b). Disproportionate rates of AIDS have been found among black and Hispanic IDUs, who account for approximately 80% of the AIDS cases among persons who inject drugs (Chaisson, Moss, Onishi, Osmond, & Carlson, 1987; Curran et al., 1988; Lange et al., 1988). This racial/ethnic difference has been attributed to differences in needle-sharing habits and in attendance at “shooting galleries” among black, Hispanic, and white IDUs. Among black IDUs, prostitution and low participation rates in drug treatment programs have also been related to increased risk for HIV (Lewis & Waters, 1991). Heterosexual Contact

Heterosexual contact accounts for 36% of AIDS cases in women (CDC, 1995). This percentage increased from approximately 15% in 1983 to 36% at the end of 1994. From 1992 to 1993, heterosexual contact accounted for the largest proportionate increase in reported cases of AIDS among both men and women (CDC, 1995). In 1992, for the first time, the number of AIDS cases diagnosed among women infected through heterosexual contact exceeded the number diagnosed among those infected through injection drug use, after adjusting for reporting delays (CDC, 1993b). This trend, however, varied by region: injection drug use remained the predominant mode of acquiring HIV among women in the Northeast, and heterosexual transmission exceeded transmission through injection drug use in the South, the Midwest, and the West (CDC, 1993b).

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The number of women who have been infected with HIV through heterosexual contact may be underestimated. Women who inject drugs frequently have male sex partners who also inject drugs or have other risk factors. Thus, some female IDUs may have become HIV-infected through sexual contact with these partners. Additionally, approximately 11% of women who have AIDS report that they have none of the established risk factors (Castro et al., 1988; CDC, 1995). It is likely that a portion of these cases represent women who were heterosexually infected by partners whose HIV status or risk history was unknown to the woman (CDC, 1995). Women currently are more affected by heterosexually acquired HIV than are men; 67% of heterosexually acquired AIDS cases are in women. Potential explanations for these higher rates include: (1) the greater efficiency of transmission from a man to a woman than from a woman to a man (Padian, Shiboski, & Jewell, 1990) and (2) the greater number of men infected with HIV, and therefore, the greater probability that a woman will encounter an infected partner. Heterosexual transmission of HIV may be increasing among men, however. From 1992 to 1993, the rate of increase in the incidence of heterosexual transmission was greater among women (139%) than men (114%) (CDC, 1995). Women are more likely to acquire HIV through heterosexual contact if they have unprotected sex with a partner at high risk or with multiple partners. Existing data on patterns of women’s sexual behavior suggest that most women have relatively few sex partners (Seidman, Mosher, & Aral, 1992; Smith, 1991). Thus, most women are at heterosexual risk because of the behaviors of their partners. Sexual contact with a male partner who injects drugs is the most prevalent transmission route for women with heterosexually acquired HIV, representing 53% of all heterosexual AIDS cases among women (CDC, 1995). Most female partners of male IDUs do not themselves inject drugs (Mondanaro, 1990); however, the drug use of their partners puts them at extremely high risk for HIV. The remaining heterosexually acquired cases of AIDS among women can be accounted for by sexual contact with a bisexual male (9%), a person with hemophilia (1%), a transfusion recipient (3%), and a person with HIV infection whose risk is initially reported as unknown (36%) (CDC, 1995). Women with multiple sex partners have a greater chance of encountering an HIV-infected partner than do women with fewer partners. Additionally, they are at increased risk for acquiring an STD, and to the extent that STDs facilitate transmission of HIV, the higher incidence of STDs may contribute to the higher incidence of HIV in women with multiple sex partners (Holmberg, Horsburgh, Ward, & Jaffe, 1989). Several groups of women are at increased risk for HIV because they have multiple sex partners. Commercial sex workers, in particular, are at increased risk for HIV because of the number of sex partners they have; however, they may also be at risk because of the frequency of sex, high-risk sex practices (anal sex), and their own injection drug use (Miller, Turner, & Moses,

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1990). Estimates of the prevalence of HIV infection among sex workers range from 50% in certain areas of the Northeast and Puerto Rico to 0% in smaller cities in rural areas (Darrow, 1990). Women who use crack cocaine are also more likely to have multiple sex partners, including partners with whom they exchange sex for drugs or money, and thus are at increased risk for encountering an HIV-infected partner (Fullilove, Fullilove, Bowser, & Gross, 1990; National Research Council, 1990; Edlin et al., 1994; Ellerbrock et al., 1995). Finally, recent studies have suggested that women who begin sexual intercourse early are more likely to have multiple partners and thus to be at greater risk for HIV infection than women who delay intercourse (Greenberg, Magder, & Aral, 1992). The National Survey of Family Growth has shown that first sexual experiences are occurring at younger ages and that younger age at first intercourse is associated with a greater number of sex partners (CDC, 1991). These factors may have contributed to the significant increase in AIDS cases among women infected as adolescents. The risk of acquiring HIV heterosexually can be greatly reduced through the use of latex condoms during sex. The evidence indicates, however, that only a small percentage of persons use condoms consistently, even with partners at high risk for HIV. In a national telephone survey, Catania et al. (1992) found that 71% of the persons surveyed who had partners at risk for HIV had not used condoms in the previous 6 months. Even lower rates of condom use have been reported by women who have casual partners (Soskolne, Aral, Magder, Reed, & Bowen, 1991), by prostitutes (CDC, 1987), and by women being treated for STDs (Quinn et al., 1988). Other Modes of Transmission

Transfusion recipients and recipients of other blood products account for approximately 5% of women with AIDS (CDC, 1995). The number of women who have become HIV-infected through blood or blood products has tapered. Virtually all new cases of transfusion-related AIDS cases are associated with the receipt of blood before 1985 (i.e., before HIV antibody screening of blood donations was implemented) (Ward, Kleinman, Douglas, Grindon, & Holmberg, 1988). The remaining 11% of women with AIDS are accounted for by a small number of women who have acquired HIV through occupational exposure, primarily through needle stick injuries, and a larger number of women who have no initial identifiable risk (CDC, 1995). Of women with no identified risk on their initial AIDS case report, follow-up interviews reclassified 66% as having heterosexual contact risk for HIV and 27% as having drug use risk. For only 1% of women could no risk factor be identified (CDC, 1995). Female-to-female sexual transmission of HIV has been of interest and concern to health care providers and HIV-infected women. A few cases of female-tofemale transmission have been reported in the medical literature (Marmor et al.,

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1986; Monzon & Capellan, 1987; Perry, Jacobsberg, & Fogel, 1989). However, several reviews of women reported with HIV/AIDS who had sexual contact with other women revealed that in all of these cases but one, another risk factor was present including injection drug use and sex with male partners (Chu, Hammett, & Buehler, 1992; Chu, Conti, & Schable, 1994).

MANIFESTATIONS OF HIV INFECTION IN WOMEN The first case of AIDS in a U.S. woman was reported in August, 1981 (CDC, 1981), and the first description of clinical and epidemiologic characteristics of women with AIDS appeared in May, 1982 (Masur et al., 1982). However, because of the early severe impact of the epidemic on homosexual/bisexual men, almost all studies to date of the natural history of HIV infection have been conducted in cohorts of white homosexual men living in AIDS epidemic centers such as New York and San Francisco. Studies of blood transfusion recipients and IDUs have included some women, but not in sufficient numbers to definitively examine gender differences in HIV disease progression. In recent years, several studies have attempted to describe aspects of the course and clinical manifestations of HIV infection in groups of women monitored over varied periods of time. Many of these studies, however, have not included large enough numbers of HIV-infected women, appropriate seronegative controls, or sufficient periods of follow-up to clearly establish the natural history of HIV disease in women. The following information represents a review of what is currently known about the manifestations and progression of HIV infection in U.S. women. Disease Manifestations: Non-AIDS-Defining Conditions An acute HIV infection syndrome that has been described in homosexual men may occur in 50-70% of persons with recent HIV infection (Tindall & Cooper, 1991). This illness is characterized by flulike symptoms and occurs 3-6weeks after HIV exposure (Kinloch-de Loës et al., 1993). Of eight women in Rhode Island with documented acute retroviral syndrome, six had symptoms previously described in seroconverting homosexual men (fever, malaise, and lymph node enlargement), while two had acute nonbacterial meningitis (Carpenter et al., 1991). Following this acute illness is a long period of asymptomatic HIV infection, during which HIV establishes a chronic infection, primarily involving lymph nodes. Over several years, chronic HIV infection leads to the gradual impairment of the immune system by several mechanisms, including destruction of CD4+ T lymphocytes, alterations in the function of several types of immune cells, and impaired regulation of the secretion of important immunologically active sub-

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stances (e.g., interleukins, interferons). This process eventually leaves the infected person susceptible to the many opportunistic infections and malignancies that define AIDS. The hallmark of HIV disease progression, a decline over time in CD4+ T lymphocytes, has been prospectively studied in a few cohorts of women and heterosexual men, and these studies have suggested no substantial difference in immunologic decline between HIV-infected men and women. For example, studies of male and female IDUs found no significant gender differences in patterns of CD4+ T-lymphocyte counts over time (Chaisson et al., 1992; Selwyn et al., 1992) or in other markers of disease progression such as neopterin, ß2-microglobulin, or serum IgA levels (Chaisson et al., 1992). Because women normally experience a mild form of immunosuppression during pregnancy, including a decline in CD4+ T lymphocytes (Biggar et al., 1989), the effect of pregnancy on HIV disease progression in women was initially of concern. Early studies appeared to show that pregnancy had a deleterious effect, but these studies included small numbers of women who were diagnosed with HIV infection because of their own illness or the illness of a child from a previous birth (both of which are in themselves associated with compromised health and shortened survival when compared to women diagnosed while asymptomatic). In addition, these early studies did not include appropriate controls (Jensen et al., 1985; Minkoff, Nanda, Menez, & Kikhig, 1987; Scott et al., 1985). Larger, prospective, controlled studies have showed no increase in disease progression over the short term (1-2years postpartum) associated with pregnancy, suggesting that pregnancy has little or no independent effect on the progression of HIV disease (Brettle & Leen, 1991; Deschamps et al., 1993). Similarly, the few published studies have not shown any specific effects of HIV infection on the course or outcome of pregnancy (Vermund, Galbraith, Ebner, Sheon, & Kaslow, 1992). The normal, asymptomatic presence of candida in the vagina of healthy women and the known estrogenic effects that facilitate candidal growth (Styrt & Sugarman, 1991) might increase the opportunity for invasive candidal disease among immunosuppressed women with HIV infection. This possibility is supported by recent studies indicating that the location and severity of mucosal candidiasis in women appear to be correlated with degrees of immunosuppression: among women with early HIV infection, recurrent or chronic vaginal candidiasis, as opposed to the episodic vaginal candidiasis seen in uninfected women, may be a frequent clinical manifestation (Carpenter et al., 1991; Rhoads, Wright, Redfield, & Burke, 1987); moderate immunosuppression in women is associated with oral candidiasis; and in women with marked immunosuppression, esophageal candidiasis (an AIDS-defining condition) occurs (Imam et al., 1990). A recent study has looked at the occurrence of oral candida (and other) lesions in women. This 4-year prospective study of 176 HIV-infected and 117 HIVuninfected women found that 22% of HIV-infected women had at least one oral

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lesion on exam, while only 3% of uninfected women had a lesion. A higher prevalence of oral candidiasis and oral hairy leukoplakia was found among HIVinfected compared to uninfected women, as has been found in men. Among HIVinfected women, the prevalence of oral candidiasis was significantly associated with increasing levels of immunosuppression (Shiboski et al., 1994). Although well-controlled, prospective data are sparse, several studies report that the prevalence of both human papilloma virus (HPV) infection (the cause of genital warts) and abnormal growth of cervical cells (dysplasia) is higher among HIV-positive than HIV-negative women. This finding is of special concern because some strains of HPV are probably the causative agents of cervical dysplasia, and cervical dysplasia can lead to cervical cancer. A study of 67 women found that 49% of the 35 HIV-infected women but only 25% of the 32 HIV-uninfected women had HPV infection. Among the seropositive women, 50% with symptomatic HIV infection had cervical dysplasia, while only 23% with asymptomatic infection did (Feingold et al., 1990). Because the immune system both controls the response to infection and provides defense against the development and spread of cancer cells, additional concerns are raised about the control and disease course of HPV infection in HIV-immmunocompromised women. Studies of HIV-infected women have shown an association between immunosuppression and severe grade of dysplasia on Pap smear or cervical biopsy, particularly among women shown to be infected with both HIV and HPV (Maiman et al., 1991; Schafer, Friedmann, Mielke, Schwartllander, & Koch, 1991). A study of 96 women in New York City found cervical dysplasia in 52% of the 27 women infected with both viruses, in 18% of the 34 women with either HIV or HPV infection, and in 9% of the 35 women infected with neither virus (Vermund et al., 1991). The largest of these controlled studies examined 398 HIV-seropositive and a demographically similar group of 357 seronegative women recruited from the same clinical sites (HIV/AIDS clinics, STD clinics, a methadone clinic, and a research clinic) (Wright, Ellerbrock, et al., 1994; Xiao-Wei et al., 1995). Each woman underwent a cytologic and colposcopic evaluation, was tested for HPV DNA, and was interviewed. Cervical intraepithelial neoplasia (CIN; all grades) was confirmed by colposcopy and/or biopsy in 80 (20%) HIV-infected women and 15 (4%) HIV-uninfected women (p <0.001). No invasive cancers were found. The sensitivity and specificity of Pap smears in seropositive women were 81 and 87%, respectively. Among those with high-grade CIN, Pap smears failed to detect an abnormality in only 0.8% of the 398 HIV-seropositive women evaluated. By multiple logistic regression analysis using a model that included behavioral and biologic risk factors for CIN, CIN was independently associated with HPV infection (OR, 9.8), HIV infection (OR, 3.5), CD4+ T-lymphocyte count <200 cells/µ1 (OR, 2.7) and age greater than 34 years (OR, 2.0). Several studies of treated cervical dysplasia suggested that HIV-infected, immunosuppressed women receiving standard therapies may have high rates (48-

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50%) of recurrence or persistence of dysplasia (Maiman et al., 1993; Adachi, Fleming, Burk, Ho, & Klein, 1993). Wright and colleagues recently reported a retrospective review of treatment outcome among 34 HIV-seropositive women and 115 women of unknown serostatus who had undergone loop electrosurgical excision for biopsy-proven CIN, and who had at least 6 months of follow-up, or documented recurrent/persistent disease during less than 6 months of follow-up (Wright, Koulous, et al., 1994). HIV-infected women had a significantly higher rate of recurrent/persistent CIN (56%) than women of unknown serostatus (13%), regardless of grade of CIN (p, 0.001). Additional treatment questions are raised by the finding that CIN in a multifocal, circumferential pattern that surrounded the area of the cervix that had been excised occurred in 32% of the HIV-infected women who developed recurrent/persistent disease, but in none of the 10 women of unknown serostatus. Early reports suggested that pelvic inflammatory disease (PID) in HIVinfected women occurred more frequently, was more likely to be caused by unusual organisms, and required more aggressive treatment than in uninfected women (Hoegsberg et al., 1990). However, these findings have not been borne out in recent controlled studies which have shown that although PID in HIV-positive women may present with greater clinical severity, it has the same microbial etiologies and responds as quickly to standard treatments as PID in HIV-negative women (Irwin et al., 1993; Moorman et al., 1993). A recent study examined whether HIV infection affects menstruation and found no independent effect when substance use and age are controlled for (Shah et al., 1994). Disease Manifestations: AIDS-Defining Conditions Although the occurrence of AIDS-defining conditions differs somewhat for men and women, the available data suggest there are more similarities than differences. When comparisons are made between men and women infected by the same mode of HIV transmission (i.e., heterosexual sex, injection drug use, or blood transfusion), few gender differences in AIDS-defining conditions are observed (Ellerbrock et al., 1991; Selwyn et al., 1992; Ward et al., 1989). A recent analysis of gender differences among persons with AIDS-defining conditions diagnosed from 1988 through mid-1991 indicated similar prevalence for most, but not all, AIDS-defining conditions when differences in race/ethnicity and mode of transmission were controlled for. In a comparison of 7183 female and 21,776 male IDUs, only esophageal candidiasis, herpes simplex virus (HSV) disease, and cytomegalovirus (CMV) disease were significantly more frequent among women than men, while toxoplasmosis, cryptococcosis, histoplasmosis, Kaposi’s sarcoma (KS), and lymphomas were significantly more common among men (Fleming, Giesielski, Byers, Castro, & Berkelman, 1993).

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Pneumocystis carinii pneumonia (PCP) is the most frequently reported AIDS-defining condition in both women and men (both homosexual and heterosexual). Early studies with small numbers of participants suggested that women were less likely to develop PCP than men (Carpenter, Mayer, Fisher, Desai, & Durand, 19889; Chu, Buehler, & Berkelman, 1990); however, recent controlled studies with larger numbers of women have reported no gender differences in risk of developing this opportunistic infection (Fleming et al., 1993; Selwyn et al., 1992). Recurrent bacterial pneumonia, a recently added AIDS-defining condition, is common in both male and female IDUs, but no gender differences have been detected (Farizo et al., 1992). KS is uncommon among U.S. women and heterosexual men with HIV disease and primarily occurs among homosexual men (Beral, Peterman, Berkelman, & Jaffe, 1990; Farizo et al., 1992). In areas of Africa where an endemic form of KS occurs, women with HIV infection have KS more frequently than do women in North America or Europe, but still less frequently than heterosexual African men (Brettle & Leen, 1991). The 1993 revised definition of AIDS (CDC, 1992b) includes one condition specific to women: invasive cervical carcinoma. This condition was included in the AIDS case definition because of the high prevalence among HIV-seropositive women of HPV infection and CIN, both considered precursors to cervical cancer. However, no data to date have shown an increased rate of invasive cancer or deaths associated with cervical cancer in HIV-infected women, despite searches for such evidence in several data bases (Buehler, Hanson, & Chu, 1992). Disease Course: Rate of Progression The median time from HIV infection to the development of AIDS is 10 years in cohorts of homosexual men, with mean cumulative rates of progression of 0-2% at 2 years, 5-10%at 4 years, 10-25%at 6 years, 30-40%at 8 years, 48-51%at 10 years, and 61% at 11.8 years (Moss & Bacchetti, 1989; Rutherford et al., 1990; Lifson, Hessol, & Rutherford, 1992). However, no information has been published from prospective studies specifically designed to examine the rate of HIV disease progression among U.S. Women. Disease progression may be somewhat faster among persons infected by blood transfusion than among homosexual men (Ward et al., 1989), but transmission through blood transfusion accounts for a small percentage of U.S. women infected with HIV. One study found a longer incubation period (from the date of HIV infection to the development of an AIDS-defining condition) for women infected by transfusion than for men (Medley, Anderson, Cox, & Billard, 1987), but other studies of transfusion cohorts have found no gender or racial differences. The rate of progression to AIDS among IDUs is not fully established. However, one prospective study of IDUs found no gender differences in disease progression over 3 years of follow-up (Selwyn et al., 1992). One retrospective chart review of 40 women with known or attributed dates

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of seroconversion (21 infected through injection drug use, 19 through heterosexual contact) yielded an estimate of 9.2-9.6years from infection to Cd4+ cell counts <200 cells/mm3 (Flanigan et al., 1992). This incubation period is similar to that found in longitudinal cohort studies of homosexual and hemophiliac men (Biggar et al., 1989; Goedert et al., 1989). Thus, the available data suggest that time to the development of AIDS does not differ significantly by gender, although additional prospective studies with larger sample sizes are needed before rates of HIV disease progression among women can be estimated more accurately. Disease Course: Survival In 1993, the last year for which complete data are available on causes of death, among women 15-44years old, HIV disease accounted for 8% of deaths among all U.S. women and was the fourth leading cause of death nationwide but it accounted for 17% of deaths among black women for whom it was the leading cause of death nationally (National Center for Health Statistics, 1994; CDC, 1993a). Among Hispanic women in this age group, in 1991, HIV accounted for 12% of deaths and was the third leading cause of death. Despite the impact of HIV infection on mortality of U.S. women, there are few data from which firm conclusions can be drawn about the survival of women from either the time of HIV infection or the development of an AIDS- defining condition. Initially, a few studies reported shorter survival times after diagnosis of AIDS among women than among men. Among 5833 persons with AIDS in New York City through 1985, women had a significantly shorter mean survival time (298 days) than men (374 days) and a higher proportion were diagnosed during the same hospitalization in which they died (16.3% of women, 10.9% of men). After age, risk group, and defining condition at AIDS diagnosis were controlled for, a significant gender difference in survival time remained (Rothenberg et al., 1987). A similar analysis of AIDS cases reported in San Francisco from 1981 to 1987 also found shorter survival times among women (median 5.9 months) than among men (median 12.5 months) (Lemp, Payne, Neal, Temelso, & Rutherford, 1990). However, recently published studies that have controlled for additional confounding variables have usually not found shorter survival times among women. Lemp reexamined the issue in a study of 139 women and 7045 men reported with AIDS in San Francisco from 1981 to 1990 and monitored prospectively through May, 1991. The study excluded those whose initial AIDS-defining condition was KS, both because it is an early manifestation of HIV infection associated with prolonged survival time, and because it occurs almost exclusively in homosexual men. Nonetheless, median survival time after the diagnosis of AIDS was significantly shorter among women (11.1 months) than among men (14.6 months). Compared with men, women in the study were older, less likely to have used antiretroviral drugs, and more likely to have received blood transfusions, all factors that have been associated with accelerated disease progression (Seage et

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al., 1993; Cooper et al., 1993; Volberding et al., 1990; Blaxhult, Granath, Lidman, & Giesecke, 1990). When these factors were statistically controlled for, the apparent gender difference in length of survival disappeared (Lemp et al., 1992). When comparing 126,363 heterosexual men and 10,558 women with AIDS reported before 1990, Ellerbrock found a median survival time of 9.8 months for women and 9.3 months for men, a statistically insignificant difference (Ellerbrock et al., 1991). A similar analysis in Massachusetts found that length of survival improved over time (1979-1988) for all AIDS patients, with no statistically significant differences in survival time after diagnosis of AIDS for women and men (Seage et al., 1993). A recent analysis of the survival of 3779 men and 768 women in the Community Programs for Clinical Research on AIDS (CPCRA), followed for a median 15.5 and 14.5 years, respectively, found that survival was statistically shorter for women although rates of disease progression were not (Melnick et al., 1994). These conflicting findings were not explained by the available data and leave open the possibility of important confounders. The findings that women are often diagnosed late in the course of illness and are less likely to use early intervention therapies suggest that apparent survival deficits for women reported in some studies are related to differences in the quality of care received by men and women. This possibility is supported by a recent report from a large French cohort study in which women who had the same rate of zidovudine use as men actually survived longer after diagnosis of AIDS, even when other prognostic variables were controlled for (Morlat et al., 1992). An analysis of data from 2526 men and 544 women admitted to the hospital in 1987 for their first episode of HIV-related PCP found that, on multivariate analysis, gender was not independently predictive of mortality (Bastian et al., 1993). Univariate analyses showed that women were more likely to be admitted through the emergency room and to be hospitalized in facilities with limited experience in treating PCP. Despite similar severity of illness among women and men, women were less likely to undergo bronchoscopy and were more likely to be intubated for respiratory failure. Few studies have been published about the causes of death among HIVinfected women, either alone or in comparison with men. Among U.S. women 1544 years old who died in 1987 and whose death certificates mention HIV/AIDS, the leading causes of death were drug abuse (26.5%), followed by PCP (19.7%), other pneumonia (14.1%), and septicemia (9.8%) (Chu et al., 1990).

HEALTH CARE ISSUES FOR WOMEN WITH HIV INFECTION Critical to optimal medical, psychological, and social service care for women are the early diagnosis of HIV infection and the provision of education about both HIV disease and the importance of early care. However, it has proved difficult to

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identify many of the women at risk for HIV and to provide appropriate education, counseling, and HIV testing services at the many sites where women traditionally receive medical and social services. Identification of HIV Infection in Women HIV infection in women may be detected in any of several circumstances. Women may perceive themselves to be at risk and seek testing. A health care provider may recognize historical risk factors or symptoms of HIV disease or may routinely recommend testing for all sexually active women. Alternatively, women may be required to undergo testing when obtaining insurance, donating blood, entering a drug treatment program, military service, or a correctional facility. The reasons women are tested vary by site. One study of outpatient, HIV, and STD clinic patients indicated that HIV-infected women were most likely to be tested when they develop symptoms of HIV disease (Beevor & Catalan, 1993). However, another study of HIV clinic patients found that 38% of HIV-positive women with a history of injection drug use, and 49% of heterosexually infected women were tested because they perceived themselves or their sex partner(s) to be at risk rather than because of symptoms. Twenty-five percent of the women who had injected drugs had undergone mandatory HIV testing in prison or on admission to a drug treatment program, while 7% of the drug-injecting women and 10% of those with only heterosexual risk were the first tested because of pregnancy. Only 20% of the female IDUs and 8% of the heterosexually infected women were asymptomatic and tested at the suggestion of their physician (Stein, Leibman et al., 1991). Evidence is accumulating that many opportunities for identifying women with HIV infection are missed. The population of women with the highest rates of HIV infection often seek medical care through emergency rooms or hospital clinics (NCHS, 1993a) or when seeking contraceptive or pregnancy care. Several studies have found that health care providers at these sites often fail to identify HIV-infected women and thus miss the opportunity to refer women to appropriate care (Schoenbaum & Webber, 1993; Boekeloo, Rabin, Coughlin, Labbok, & Johnson, 1993). Standard recommendations for HIV testing rely largely on the patient’s history of behaviors associated with risk of HIV infection. However, studies in which results from blinded testing are available indicate that standard risk history questions fail to identify the majority of asymptomatic HIV-infected women. Many studies have demonstrated that asymptomatic HIV infection among women is poorly detected in prenatal care clinics (Boekeloo et al., 1993), in emergency rooms (Schoenbaum & Webber, 1993), in STD clinics, and among hospitalized patients. Providers are often reluctant to ask sensitive questions about sexual and

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drug use behaviors, and women are frequently unwilling to disclose such behaviors to providers whom they do not know or trust. In addition, women may be unaware of behaviors of their sex partner(s) that place them at risk of heterosexual transmission. Stokes, McKirnan, Doll, & Burzette (submitted for publication) used print ads, outreach in community “pickup” areas and “mixed” bars, and snowball sampling to recruit 350 men in Chicago who reported having sex in the previous 6 months with both men and women and with at least one female partner. The 350 men reported a total of 960 female partners in the prior 6 months, of whom 71% (685) had been unaware of the man’s homosexual activity before having sex with him. Of the men who had not disclosed their bisexual behavior to any of their female partners, 64% reported unprotected sex with a woman in the past 6 months. Of the 206 men (regardless of disclosure status) who reported unprotected male-femalesex, 6% of those with a steady female partner or wife and 35% of those with no steady female partner reported unprotected receptive anal sex with a man in the prior 6 months. In a study of blood donors, 37 of 66 seropositive women were unaware of their partner’s HIV risk behavior until these women had donated blood and been found HIVseropositive (Doll, Petersen, White, Ward, & the HIV Blood Donor Study Group, 1991). Reliance on sporadically elicited risk histories is likely to perpetuate inadequate identification of asymptomatic HIV infection in women and may explain in part the repeated findings that women receive less early intervention care and more often have AIDS or HIV infection diagnosed near the time of death (Rothenberg et al., 1987). For these reasons, some have suggested that all women should be educated about HIV infection and offered HIV testing by their health care providers. The Centers for Disease Control and Prevention has recently issued guidelines recommending that all women know their HIV status and that all pregnant women be offered HIV counseling and voluntary testing by their prenatal care provider (CDC, 1994b). As part of the effort to more effectively identify seropositive women at an early stage of their infection, there is clearly a need to extend the availability of voluntary counseling and testing services to more sites where women receive health care services, such as at family planning clinics. Now that administration of AZT to women during later pregnancy and delivery (coupled with its administration to newborns) has been shown to markedly reduce perinatal HIV transmission (Connor et al., 1994; CDC, 1994b), access to affordable, culturally appropriate HIV counseling and testing must be extended to all women receiving prenatal care. Additional weight and urgency is added to the provision of voluntary HIV testing of all women of reproductive age in order to empower women with information critical to their decisions about their own physical and emotional health as well as that of their children and their husbands or partners.

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Access to and Use of Health Care Services Several conditions must exist for women to receive appropriate treatment for HIV infection and its related conditions: providers of high-quality health care services must be available and affordable, women must have knowledge of and access to clinical trials of new medications, and women must use accessible services and comply with recommended follow-up and therapy. First, health care providers who are interested in, and experienced in, the treatment of HIV disease in women must be available. Urban centers usually have physicians experienced in HIV care, but most have worked primarily with men. These physicians often refer women to other providers for medical care specific to women, such as pelvic exams, contraceptive care, or counseling about and HIV testing of young children. This fragmentation of care can contribute to “noncompliance” by increasing a woman’s number of medical visits and thus adding to demands on her time, transportation costs, and complexity of coordination of family responsibilities. Additionally, inexperience with some populations of HIVinfected patients may lead providers to alter treatment decisions based on expectations derived from sociodemographic rather than clinical characteristics of their patients (Moore, Stanton, Gopalan, & Chaisson, 1994). For example, in one study, although persons of different races, sexes, and risk behavior groups had similar HIV-related symptoms, physicians offered AZT 17% more often to men than to women, 10% more often to non-drug users than to drug users, and 10% more often to white patients than to minority patients (Stein, Piette, et al., 1991). On the other hand, providers experienced in women’s health care frequently are not familiar with HIV related care issues and so may not adequately address HIV-related concerns such as the need for drug treatment. One survey of obstetrician-gynecologists in Washington, DC found that 20% did not know which tests were recommended for screening blood and confirming HIV infection, 41% did not know that monitoring CD4+ T-lymphocyte counts is recommended for following the progression of asymptomatic HIV infection, and 55% did not regularly ask new patients if they had ever injected drugs (Boekeloo et al., 1993). Outside major metropolitan areas, providers who are trained, experienced, and interested in the care of HIV-infected women are even rarer. This situation is especially worrisome because mortality rates among patients with AIDS appear to be related to the level of experience of medical personnel in the treatment of AIDS (Stone, Seage, Hertz, & Epstein, 1992). Finding pregnancy-care providers and pediatricians who are knowledgeable about and comfortable with managing AZT therapy during pregnancy and the newborn period may be a special problem for rural women and for those in metropolitan areas with a low prevalence of HIV. The geographic availability of experienced providers may be a special problem for women in rural areas or in correctional institutions. Medical care visits that require

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traveling long distances are unlikely to be made at the recommended frequency and are not feasible during acute illness episodes when early, appropriate medical intervention may determine survival. Second, health care services must be affordable if appropriate medical care is to be realistically available to HIV-infected women. Financial accessibility can be achieved through the acceptance of both public and private insurance, and through the provision of sliding-fee scales or subsidized care for women without insurance. Over the past few decades, marked improvements have been made in funding health care services for poor women, especially those with dependent children. Consequently, higher percentages of women (88% in 1985) are covered by either public (12%) or private insurance (76%) than in the past (U.S. Bureau of the Census, 1989). Women actually may have better access to public insurance (12%) than do men (5.6%) in their communities (U.S. Bureau of the Census, 1989). Although eligibility for Medicaid and welfare has been curtailed in some places, HIV-positive women with dependent children have, in most cases, remained eligible for these programs, whereas men were first to be dropped. This factor may be part of the reason, for example, that women have more age-adjusted physician contacts per year (mean = 6.3) and report more recent health care visits (84% within the previous 12 months) than do men (mean = 4.9 visits per year with 74% within the previous 12 months) (NCHS, 1993a,b). Additionally, persons with the lowest family incomes (<$14,000) have more physician contacts than do those with higher incomes (NCHS, 1993a). These associations are consistent with studies reporting that persons with Medicaid coverage use health care services more than do either poor persons without Medicaid or those whose Medicaid has been terminated (Muller, 1988; Lurie et al., 1986). Although public insurance coverage has made many services available to the demographic groups of women who have been hit hardest by the AIDS epidemic, these insurance programs often limit coverage for HIV-related services and medications. Antiretroviral medications such as AZT, didanosine (ddI), and zalcitabine (ddC), in particular, are not always covered. Medications that are experimental, new, or expensive are almost never subsidized, although many therapies for HIV infection and its related infectious conditions fall into these categories. The small proportion of HIV-infected women with private insurance may face reimbursement caps that make their coverage insufficient for comprehensive and extended HIV-related care. Some clinics may not accept Medicaid payment for important women’s health care services, even when public insurance technically covers such services (University of Massachusetts Law Center, 1992). For example, following enactment of the Hyde amendment, which disallowed the use of federal funds for Medicaid payment of abortion services, only 12 states continued funding this procedure with state funds alone (Chavkin, 1990).

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Finally, for HIV-infected women to receive state-of-the-art care, the legal, organizational, and communication barriers to the participation of women in clinical trials must be removed so that women have early access to experimental drugs and treatments that may prolong their quality of life and survival. Though previously many women were excluded from the AIDS Clinical Trials Group and Community-Based Clinical Trials Group HIV treatment studies because of either past or present injection drug use or potential pregnancy (University of Massachusetts Law Center, 1992), many of the appropriate steps have been taken for these studies to include increasing numbers of IDUs and women. Liability issues will likely need to be further negotiated with pharmaceutical companies to increase their willingness to evaluate the metabolism, dosing, and benefit/harm ratio of investigational drugs among pregnant women (Levine, 1990). Additionally, legal issues related to the inclusion of adolescent or imprisoned women remain to be resolved. However, substantial numbers of women may yet be denied access to clinical trials because of pregnancy or a history of injection drug use or because academic medical programs concentrating on women’s health issues often do not participate in HIV-related clinical trials. Although 77 of the existing 78 maternal-fetal medicine training programs had cared for HIV-infected women during pregnancy (65 with more than five patients annually), only 18 were participating in multicenter HIV treatment studies. However, these perinatal programs provided care for an estimated 40% of the symptomatic HIV-infected women, and 34% of the asymptomatic women cared for at these 78 centers (Grossman, Nies, Lopez-Zeno, Bathgate, & Parenti, 1992). Thus, even where access to trials technically exists, nontraditional communication methods may be needed to enhance awareness by HIV-positive women of the protocols, eligibility requirements, and means of enrolling. This is particularly important for the inclusion of non-English-speaking, low-literacy, and drug-using women and for providers outside of major teaching institutions or in suburban/rural practices. Treatment of HIV Infection in Women Clinical Care

Basic HIV-related medical care is not gender-specific. All HIV-infected persons should have periodic medical histories, physical exams, and laboratory tests to identify treatable conditions such as fungal skin infections, periodontal disease, thrush, unexplained weight loss, neurologic disease, anemia, or asymptomatic CMV retinal infection (Jewett & Hecht, 1993). Additionally, periodic monitoring of CD4+ T-lymphocyte counts is recommended to assess disease progression and to direct early intervention therapy (NIAID, 1990).

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General Health Cure. General preventive health care measures for HIVinfected women should include: • Assistance with changing behaviors such as illicit drug use that may affect HIV disease progression, general health status, or health care utilization rates (Weber, Ledergerber, Opravil, Siegenthaler, & Lutley,1990), alcohol abuse (Kaslow et al., 1989), and cigarette smoking (Royce & Winklestein, 1990). • Vaccination against infections such as pneumococcal pneumonia and influenza that may occur more frequently in immunocompromised persons that those with healthy immune system (CDC, 1993~). • Vaccination against hepatitis B for women who inject drugs or whose sex partners are likely to have a history of injection drug use (CDC, 1993~). • Documentation of previous vaccination against or infection with polio, rubella (German measles), and varicella among women who may become pregnant or who care for young children. This information is used to provide appropriate vaccination and immunotherapy to women and the children to whom they are exposed (CDC, 1993~). • Screening women by history and skin testing for exposure to tuberculosis and prescribing medication to prevent active disease (CDC, 1990). • Regular gynecologic exams, including breast exam and screening tests for STDs and vaginitis, to identify treatable conditions early. Regular Pap smears (every 6-12months) are crucial for detecting cervical dysplasia and identifying women in need of further diagnostic procedures such as colposcopy or cervical biopsy (CDC, 1993d; Ellerbrock, Wright, Chaisson, Bush, & the Cervical Disease Study Group, 1993) and for determining the need for appropriate therapy to prevent the development of invasive cervical carcinoma. Cure of HIV Diseuse. Early intervention therapies for HIV-infected women are intended to prevent or delay the development of serious infections, malignancies, or symptoms associated with the progression of HIV disease. These interventions may include: • Timely prescription of medication to prevent the occurrence of opportunistic infections such as PCP (CDC, 1992c) and Mycobacterium aviumintracellulare infection (CDC, 1993e; Nightingale et al., 1993). • Timely initiation of systemic medication (e.g., fluconazole) to prevent chronic, recurrent, or severe thrush or candida vulvovaginitis and the development of esophageal candidiasis. • Timely prescription of antiretroviral medications such as AZT, ddI, ddC, or stavudine (d4T), either alone or in combination (Fischl et al., 1987,

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1990; Volberding et al., 1990; Hamilton et al., 1992; Aboulker & Swart, 1993; Cooper et al., 1993). Care Specific to HIV-Infected Women

Reproductive health raises special issues in the care of HIV-infected women. Because most HIV-infected women are of reproductive age, all providers caring for HIV-infected women must be prepared to deal with contraceptive and pregnancy-related issues. All women with reproductive capacity, regardless of HIV status, should receive basic family planning education about available contraceptive methods and be offered assistance with contraception if they desire it. All women should receive education about perinatal and sexual HIV transmission and have multiple opportunities to have questions answered and to solicit advice. ContraceptiveCare. While the safety of specific contraceptive methods for HIV-infected women is of theoretical concern, no studies have been published that document HIV-related problems with any contraceptive method. For example, although oral contraceptives may affect or be affected by antibiotics (e.g., rifampin, tetracycline) because of alterations in drug metabolism (Minkoff & DeHovitz, 1991), studies of interactions between contraceptives and antiretroviral medications are lacking. As a part of routine HIV care, health care providers should strongly recommend that women encourage their male sex partners to use condoms. Consistent condom use will protect women from acquiring STDs (e.g., hepatitis B, syphilis, chlamydia) and will protect their seronegative partners from HIV infection. However, many women are unable to insist on condom use, many men will not comply with a woman’s request, many women do not like sex with condoms, and the failure rate of condoms used alone for contraception is high. Additionally, some HIV-infected women and their partners may want to have children. Pregnancy-related decisions are often difficult for HIV-infected women, for their partners, families, and for their health care and social service providers. Many health care providers and clinic counselors have strong personal feelings about HIV-infected women having children. To provide noncoercive education and counseling, staff may need opportunities to address these feelings. In addition, they will need to receive training in pretest and posttest HIV counseling (CDC, 1993f) and basic information about HIV disease and perinatal transmission and be provided with referral sources for pregnancy-related counseling needs that they may be unable to meet. HIV-specific training and support services for family planning, primary care, and obstetrical staff are fundamental. Prenatal Care. Most published obstetrical studies of HIV-infected women to date have focused on the health status of newborns or perinatal transmission.

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Some providers assess CD4+ cell counts each trimester and postpartum to monitor their expected fall during pregnancy and document anticipated postpartum recovery to near prepregnancy levels (ACOG, 1992). Early in the epidemic, theoretical concerns arose about the safety of antiretrovirals and some antibiotics during pregnancy. A reexamination of data from animal studies, experience with HIV-uninfected women, and accumulating experience with HIV-infected women who have received AZT or trimethoprim/sulfametoxazole during pregnancy have not led to documented adverse effects on either pregnant women or their newborns (NIAID, 1991; ACOG, 1992; Sperling et al., 1992). While pregnancy has been shown to alter the metabolism of some medications, requiring alteration in dosage, few studies have examined the metabolism of HIV-associated medication such as AZT in pregnant women (O’Sullivan et al., 1993). The recent findings of the AIDS Clinical Trials Group (ACTG) Protocol 076 will have an immediate and profound impact on the care of pregnant HIV-infected women (Connor et al., 1994; CDC, 1994b). This Phase III, randomized, doubleblind, placebo-controlled clinical trial found that perinatal transmission rates were reduced by two-thirds by: (1) providing oral AZT therapy (100 mg 5x daily) to HIV+ pregnant women beginning at 14-34weeks of gestation, (2) administering intravenous AZT (2 mg/kg loading dose followed by 1 mg/hr infusion) during labor, and (3) providing oral AZT (2 mg/kg every 6 hr) to infants for the 6 weeks following birth. Women in the study had CD4+ lymphocyte counts >200 cells/µ1, had not taken AZT previously, and had no clinical indications for maternal AZT therapy. For the 183 women-infantpairs who received placebo, HIV infection of the infant HIV-infected blood culture) occurred in 25.5%. Among the 180 women-infantpairs who received AZT, 8.3% of infants were HIV-infected. No pregnancy, fetal, or infant health problems were attributed to AZT exposure. Prior to this trial, recommendations were to offer medications as indicated by the mother’s health status, present available information about the drug’s safety or risks, and follow standard practices used for nonpregnant women until a therapy was demonstrated to be associated with severe fetal complications that would justify a different standard for HIV-seropositive women (Sperling et al., 1992; Minkoff & Moreno, 1990). Following the release of results from ACTG Protocol 076, additional recommendations will undoubtedly be made to maximize access for pregnant HIV-infected women to AZT therapy for the reduction of perinatal HIV transmission risk. Obstetrical Care. Like family planning providers, obstetrical care staff will require HIV-specific training to provide nonjudgmental, high-quality care to HIVpositive pregnant women. In particular, they must be able to provide counseling to HIV-infected women about the risks and benefits of AZT therapy during pregnancy. Such counseling will need to be scientifically accurate and nonjudgmental

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about the personal value systems and beliefs of women and noncoercive of their eventual decisions about AZT therapy. Physicians will need to be fully informed about, and comfortable with, the antepartum and peripartum administration of AZT to reduce HIV transmission to offspring. To minimize the risk of perinatal HIV transmission, prenatal care providers are advised to carefully consider the risk/benefit ratio for invasive diagnostic procedures (e.g., amniocentesis, fetal scalp monitoring) that could facilitate maternal-fetalHIV transmission by exposing fetal circulation to infective maternal body fluids. Recent studies have raised the possibility that cesarean section may play a role in the preventing some perinatal transmission (Goedert, Duliége, Amos, Felton, & Biggar, 1991), but large, prospective, well-controlled studies will be necessary to determine whether the acknowledged operative risks of cesarean sections for women are outweighed by as yet unproven benefits to newborns. Finally, in the United States, formula feeding of newborns is recommended to avoid the additional risk of transmission through breastfeeding. In addition to the topics mentioned above, obstetrical care providers will need to be familiar with specific resources, such as residential facilities, women’s HIV support groups, and drug treatment programs, targeted to HIV-infected women. Pregnancy Terminations. Studies of reproductive decisions indicate that 25-44%of HIV-infected women (and a similar proportion of uninfected women) may elect to terminate their pregnancy. In a blinded 3-year seroprevalence study in New York City abortion clinics, 1 in 84 women seeking elective abortions were HIV-infected (Araneta, Weisfuse, Greenberg, Schultz, & Thomas, 1992). These investigators estimated that 1200 HIV-infected women seek abortions in NYC each year. However, no well-controlled studies have been published about the safety or complications of various methods of pregnancy termination in HIVinfected women. In the absence of contrary information, abortion protocols and procedures for HIV-seropositive women should be the same as those for HIVseronegative women. Studies have shown that abortion care providers often discriminate against known HIV-infected partners, either refusing them appointments or charging excessively high prices (APHA, 1991). This finding suggests that HIV education is a pressing need for staff at these sites and that such education should include discussion of existing antidiscrimination laws and penalties for noncompliance. Such an education program could be made part of the licensing requirements for freestanding or hospital-based clinics.

CONCLUSIONS HIV infection is affecting an increasing number of women. At present, the burden imposed by HIV primarily affects young urban minority women, who face

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many challenges in addition to those resulting from HIV. Epidemiologic data on the characteristics of HIV-infected women strongly suggest that, to impede the surge of new infections, effective interventions are urgently needed that are targeted to the particular life circumstances of women at greatest risk for HIV. Women must be offered prevention programs designed to reduce injection drug use, needle sharing by female IDUs, early initiation of sexual intercourse, and sexual encounters without condom use. Many women, however, are already HIVinfected. To ensure that these women receive the appropriate health care services, a number of issues must be considered. First, because women with HIV often are not identified in a timely manner, they frequently do not receive the early HIV care that is essential for prolonging and enhancing the quality of their lives. Clearly, efforts must be made to raise women’s awareness of HIV risks and to increase their use of counseling and testing services. Additionally, efforts must be made to increase health care providers’ awareness of indicators of HIV infection in women and to develop their risk assessment skills. Both efforts will be aided by making standard HIV counseling and testing services available at more sites where women receive health care services, such as family planning clinics. All women seeking pregnancyrelated care must be provided access to HIV counseling and voluntary testing services early in their prenatal care. Second, for women to receive appropriate health care services, more must be known about the manifestations of HIV disease in women and the effectiveness of various treatments for HIV-related conditions in women. Small studies have examined some of these issues and will continue to offer important new information about women and HIV. These studies, however, are usually limited by small numbers of participants and short periods of observation. Currently, a large-scale prospective study of HIV-infected women and a comparable group of seronegative women, the CDC “HER” Study, is under way in four cities in the United States. A collaborative study, the NIAID “WIHS” study, will begin enrolling women at six sites in late 1994. These studies will monitor participants over several years to describe the manifestations of HIV infection in women; the biologic, social, and psychological factors related to disease progression; and the use and effectiveness of medical treatments for specific HIV-related conditions. Similar studies of women are being conducted in Europe and Africa (Lindan et al., 1992; Morlat et al., 1992; Deschamps et al., 1993). This information is sorely needed to assist health care providers in improving their management of HIV infection in women and in planning for appropriate social and psychological services that will enhance the quality of women’s lives. Finally, if women are to receive the needed care for HIV disease, appropriate services must be accessible to them. Currently, health care providers with expertise in both the treatment of HIV infection and areas specific to the care of women are needed. Without health care providers who have expertise in both areas, women too often must go to multiple providers for care, thereby fragmenting the medical advice and services that they receive and increasing the chances that they will not

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comply with health recommendations. Health care systems need to provide centralized care or to offer case management to assist women in finding, accessing, and coordinating the needed services. When the special needs of women (which can include assistance with reproductive issues, child-care, family problems, and substance abuse) are added to the burdens experienced by all HIV-infected persons, the task of getting appropriate services becomes overwhelming. As the number of HIV-infected women in need of health care services swells in the coming years, these issues will become increasingly salient. Care providers, administrators, funders, and advocates must begin to plan for the medical, psychological, and social service care of HIV-infected women.

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Nightingale, S. D., Cameron, W., Gordin, F. M., Sulam, P. M., Cohn, D. L., Chaisson, R. E., Eron, L. J., Sparti, P. D., Bihari, B., Kaufman, D. L., Stern, J. J., Pearce, D. D., Weinberg, W. G., LaMarca, A., & Siegle, F. P. (1993). Two controlled trials of Rifabutin prophylaxis against Mycobacterium avium complex infection in AIDS. New England Journal of Medicine, 329, 828-833. Novick, L. F., Glebatis, D. M., Stricof, R. L., MacCubbin, P. A., Lessner, L., & Berns, D. S. (1991). Newborns seroprevalence study: Methods and results. American Journal of Public Health, 81, 15-21. O’Sullivan, M. J., Boyer, P. J., Scott, G. B., Parks, W. P., Weller, S., Blum, M. R., Balsely, J., Bryson, Y. J., and the Zidovudine Collaborative Working Group. (1993). The pharmacokinetics and safety of zidovudine in the third trimester of pregnancy for women infected with human immunodeficiency virus and their infants: Phase I acquired immunodeficiency syndrome clinical trials group study (protocol 082). American Journal of Obstetrics and Gynecology, 168, 1510-1516. Padian, N., Shiboski, S., & Jewell, N. (1990, June). The relative efficiency offemale-to-male HIVsexual transmission. Paper presented at the Sixth International Conference on AIDS, San Francisco. Perry, S., Jacobsberg, L., & Fogel, K. (1989). Orogenital transmission of HIV. Annals of Internal Medicine, 111, 951-952. Quinn, T. C., Glaser, D., Cannon, R., Matuszak, D., Dunning, R., Kline, R., Campbell, C., Israel, E., Fauci, A., & Hook, E. (1988). Human immunodeficiency virus infection among patients attending clinics for sexually transmitted diseases. New England Journal of Medicine, 318, 197. Rhoads, J. L., Wright, C., Redfield, R. R., & Burke, D. S. (1987). Chronic vaginal candidiasis in women with human immunodeficiency virus infection. Journal of the American Medical Association, 257, 3105-3107. Rothenberg, R., Woelfel, M., Stoneburner, R., Milberg, J., Parker, R., & Truman, B. (1987). Survival with the acquired immunodeficiency syndrome: Experience with 5833 cases in New York City. New England Journal of Medicine, 317, 1297-1302. Royce, R. A., & Winklestein, W. (1990). HIV infection, cigarette smoking and CD4+ T-lymphocyte counts: Preliminary results from the San Francisco Men’s Health Study. AIDS, 4, 327-333. Rutherford, G. W., Lifson, A. R., Hessol, N. A., Darrow, W. W., O’Malley, P. M., Buchbinder, S. P., Barnhart, J. L., Bodecker, T. W., Cannon, L., Doll, L. S., Holmberg, S. D., Harrison, J. S., Rogers, M. F., Werdegar, D., & Jaffe, H. W. (1990). Course of HIV-1 infection in a cohort of homosexual and bisexual men: An 11-year follow-up study. British Medical Journal, 301, 1183-1188. Schafer, A., Friedmann, W., Mielke, M., Schwartlander, B., & Koch, M. A. (1991). The increased frequency of cervical dysplasia-neoplasia in women infected with the human immunodeficiency virus is related to the degree of immunosuppression. American Journal of Obstetrics and Gynecology, 164, 593-599. Schoenbaum, E. E., & Webber, M. P. (1993). The underrecognition of HIV infection in women in an inner-city emergency room. American Journal of Public Health, 83, 363-368. Scott, G. B., Fischl, M. A., Klimas, N., Fletcher, M. A., Dickinson, G. M., Levine, R. S., & Parks, W. P. (1985). Mothers of infants with the acquired immunodeficiency syndrome. Journal of the American Medical Association, 253, 363-366. Seage, G. R., Oddleifson, S., Carr, E., Shea, B., Makarewicz-Robert, L., van Beuzekom, M., & De Maria, A., (1993). Survival with AIDS in Massachusetts, 1979 to 1989.American Journal of Public Health, 83, 72-78. Seidman, S. N., Mosher, W. D., & Aral, S. 0. (1992). Women with multiple sexual partners: United States, 1988. American Journal of Public Health, 82, 1388-1394. Selik, R. M., Chu, S. Y., & Buehler, J. W. (1993). Human immunodeficiency virus infection as the leading cause of death among young adults in U.S. cities and states. Journal of the American Medical Association, 269, 2991-2994. Selwyn, P. A., Alcabes, P., Hartel, D., Buono, D., Schoenbaum, E. E., & Klein, R. S., Davenny, L., & Friedland, G. H. (1992). Clinical manifestations and predictors of disease progression in drug

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users with human immunodeficiency virus infection. New England Journal of Medicine, 327, 1697-1703. Shah, P. N., Smith, J. R., Wells, C., Barton, S. E., Kitchen, V. S., & Steer, P. J. (1994). Menstrual symptoms in women infected by the human immunodeficiency virus. Obstetrics and Gynecology, 83, 397-400. Shiboski, C. H., Hilton, J. F., Greenspan, D., Westenhouse, J. L., Derish, P., Vranizan, K., Lifson, A. R., Canchola, A., Katz, M. H., Cohen, J. B., Moss, A. R., & Greenspan, J. S. (1994). HIV-related oral manifestations in two cohorts of women in San Francisco. Journal ofAcquired Immune Deficiency Syndromes, 7, 964-971. Smith, T. W. (1991). Adult sexual behavior in 1989. Numbers of partners, frequency of intercourse, and risk of AIDS. Family Planning Perspectives, 23, 102-106. Soskolne, V., Aral, S. O., Magder, L. S., Reed, D. S., & Bowen, G. S. (1991). Condom use with regular and casual partners among women attending family planning clinics. Family Planning Perspectives, 23, 222-225. Sperling, R. S., Steatton, P., O’Sullivan, M. J., Boyer, P., Watts, D. H., Lambert, J. S., Hammill, H., Livingston, E. S., Gloeb, D. J., Minkoff, H., & Fox, H. E. (1992). A survey of zidovudine use in pregnant women with human immunodeficiency virus infection. New England Journal of Medicine, 326, 857-861. Stein, M. D., Leibman, B., Wachtel, T. J., Carpenter, C. C., Fisher, A., Durand, L., O’Sullivan, P. S., & Mayer, K. H. (1991). HIV-positive women: Reasons why they are tested for HIV and their clinical characteristics on entry into the health care system. Journal of General Internal Medicine, 6(4), 286-289. Stein, M. D., Piette, J., Mor, V., Wachtel, T. J., Fleishman, J., Mayer, K. H., & Carpenter, C. C. (1991). Differences in access to zidovudine (AZT) among symptomatic HIV-infected persons. Journal of General Internal Medicine, 6(1), 35-40. Stokes, J. P., McKirnan, D. J., Doll, L., & Burzette, R. G. Female partners of bisexual men: What they don’t know might hurt them. Psychology of Women Quarterly (in press). Stone, V. E., Seage, G. R., Hertz, T., & Epstein, A. M. (1992). The relation between hospital experience and mortality for patients with AIDS. Journal of the American Medical Association, 268,26552661. Styrt, B., & Sugarman, B. (1991). Estrogens and infection. Reviews of lnfectious Diseases, 13, 11391150. Sweeney, P. A., Onorato, I. M., Allen, D. M., Byers, R. H., & the Field Services Branch. (1992). Sentinel surveillance of human immunodeficiency virus infection in women seeking reproductive health services in the United States, 1988-1989.Obstetrics and Gynecology, 79, 503-510. Tindall, B., & Cooper, D. A. (1991). Primary HIV infection: Host responses and intervention strategies. AIDS, 5(1), 1-14. University of Massachusetts Law Center. (1992). Searching for women: A literature review on women, HIV and AIDS in the United States (pp. 92, 94). Boston: Author. U.S. Bureau of the Census. (1989). Health insurance coverage status by selected characteristics, 1985. Statistical Abstract (p. 96). Vermund, S. H., Galbraith, M. A., Ebner, S. C., Sheon, A. R., & Kawlow, R. A. (1992). Human immunodeficiency virus/acquired immunodeficiency syndrome in pregnant women. Annals of Epidemiology, 2, 773-803. Vermund, S. H., Kelley, K. F., Klein, R. S., Feingold, A. R., Schreiber, K., Munk, G., & Burk, R. D. (1991). High risk of human papillomavirus infection and cervical squamous intraepithelial lesions among women with symptomatic human immunodeficiency virus infection. American Journal of Obstetrics and Gynecology, 165, 392-400. Volberding, P. A., Lagakos, S. W., Koch, M. A., Pettinelli, C., Myers, M. W., Booth, D. K., Balfour, H. H., Reichman, R. C., Bartlett, J. A., Hirsch, M. S., Murphy, R. L., Hardy, W. D., Soeiro, R., Fischl,

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M. A., Bartlett, J. G., Merigan, T. C., Hysloop, N. E., Richman, D. D., Valentine, F. T., Corey, L., & the AIDS Clinical Trials Group of the National Institute of Allergy and Infectious Diseases. (1990). Zidovudine in asymptomatic human immunodeficiency virus infection: A controlled trial in persons with fewer than 500 CD4-positive cells per cubic millimeter. New England Journal of Medicine, 322, 941-949. Ward, J. W., Bush, T. J., Perkins, H. A., Lieb, L. E., Allen, J. R., Goldfinger, D., Samson, S. M., Pepkowitz, S. H., Fernando, L. P., Holland, P. V., Kleinman, S. H., Grindon, A. J., Gamer, J. L., Rutherford, G. W., & Holmberg, S. D. (1989). The natural history of transfusion-associated infection with human immunodeficiency virus: Factors influencing the rate of progression to disease. New England Journal of Medicine, 321, 947-952. Ward, J. W., Kleinman, S. H., Douglas, D. K., Grindon, A. J., & Holmberg, S. D. (1988). Epidemiologic characteristics of blood donors with antibody to human immunodeficiency virus. Transfusion, 28(4), 298-301. Wasser, S. C., Gwinn, M., & Fleming, P. (1993). Urban-nonurbandistribution of HIV infection in childbearing women in the United States. Journal of Acquired Immune Deficiency Syndromes, 6, 1035-1042. Weber, R., Ledergerber, B., Opravil, M., Siegenthaler, W., & Lutley, R. (1990). Progression of HIV infection in misusers of injected drugs who stop injecting or follow a programme of maintenance treatment with methadone. British Medical Journal, 301, 1362-1365. Wright, T. C., Ellerbrock, T. V., Chaisson, M. A., Xun, X. W., Young, S., Bush, T., Dole, P., Van Devanter, N., Richart, R. M., Koulos, J., Brudney, K., Marte, C., Perez, G., &Johnson, E. (1994). Cervical intraepithelial neoplasia in women infected with human immunodeficiency virus: Prevalence, risk factors, and validity of Pap smears. Obstetrics and Gynecology, 84, 591-597. Wright, T. C., Koulos, J., Schnoll, F., Swanbeck, J., Ellerbrock, T. V., Chaisson, M. A., & Richart, R. M. (1994). Cervical intraepithelial neoplasia in women infected with human immunodeficiency virus: Outcome after loop electrosurgical excision. Gynecologic Oncology, 55, 253-258. Xiao-Wei, S., Ellerbrock, T. V., Lungu, O., Chaisson, M. A., Bush, T. J., &Wright, T. C. (1995). Human papillomavirus infection in human immunodeficiency virus-seropositive women. Obstetrics and Gynecology, 85, 680-686.

2

Psychosocial Stress and Adaptation Processes for Women Coping with HIV/AIDS Sharon Rae Jenkins and Helen L. Coons This chapter reviews the sources of stress for women coping with HIV; how stresses change from preinfection through disease progression; and how coping responses may assist or impede longer-term adaptation. Stresses and apparent failures of coping are associated with both immune function and physical health (e.g., Andersen, Kiecolt-Glaser, & Glaser, 1994; Cohen & Williamson, 1991; Herbert & Cohen, 1993; O’Leary, 1990; Taylor, 1990), and specifically among men with HIV (Baum & Temoshok, 1990; Glaser & Kiecolt-Glaser, 1987; Goodkin, Fuchs, Feaster, Leeka, & Rishel, 1992; Ironson et al., 1990, 1994), although there have also been negative findings (Kessler et al., 1991; Perry, Fishman, Jacobsberg, & Frances, 1992). However, there is much less systematic documentation relating stressors and adaptation processes to physiological functioning in women, and almost none in women with HIV/AIDS. Women may differ from men and from each other in their stress exposure and experience, the resources available to them, and thus in their vulnerability to distress. Resources shown to carry health benefits for Caucasian men, such as social support, may be less useful or more complex to use for women and for men of color (Shumaker & Hill, 1991). Emotion-focused coping that is helpful to women has not been well studied (Stanton, Danoff-Burg, Cameron, & Ellis, 1994). Generalizations are difficult, and problematic if they misrepresent the diversity and differential vulnerability among women. This chapter explores the range of psy-

SHARON RAE JENKINS • Department of Psychology, University of North Texas, Denton, TX 76203-6587. HELEN L. COONS • The Health Federation of Philadelphia, Philadelphia, PA 19107. Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 33

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chosocial concerns and adaptation processes of women coping with HIV/AIDS in the United States, as reported by researchers and clinicians. Understanding the sources of stress that women experience and what adaptive resources they use to cope with HIV is important for four reasons. First, in studies of HIV+ gay men, attitudes such as fatalism that are suggestive of depression, and depression itself, have been shown to have a negative impact on immune functioning (Kemeny et al., 1994; Reed, Kemeny, Taylor, Wang, & Visscher, 1994); personality variables associated with positive coping have predicted longer survival (Rabkin, Remien, Katoff, & Williams, 1993; Temoshok, O’Leary, & Jenkins, 1995). Thus, poor coping and depression may be associated with susceptibility to infection, and with more rapid disease progression and shorter survival in HIVinfected persons. Second, information about potential stressors and useful coping strategies may be helpful to newly diagnosed women in reducing their expected and actual isolation and alienation, allowing them to gather their resources to confront the crises that may lie ahead. Third, this information should be used to improve our existing systems for HIV education and service delivery by making them more accessible and appropriate to the populations of women who are most at risk for HIV infection and most vulnerable to its consequences. Finally, an examination of stressors in relation to coping and supportive resources may suggest gaps where psychological interventions and other services might be most needed to prevent premature hospitalizations, crises caused by delay, and lowered quality of life for women with HIV and their families. The first section presents an interdisciplinary overview of literatures relevant to women coping with HIV and AIDS. These include literatures on women’s situation relative to gay men coping with HIV; the psychosocial context of HIV for women; and coping with chronic or life-threatening physical illness. In the sections that follow, sources of stress and issues in coping are presented for each stage of HIV disease progression: HIV testing, initial HIV+ diagnosis, and progression to AIDS. Challenges at these different crisis points across the disease course are reviewed.

WOMEN, GAY MEN, AND HIV Too often, women have been omitted from HIV research, or studied as sources of contagion to men and infants (Broun, 1993; Carovano, 1991; Fox, Ethier, Cerreta, & Ickovics, 1995; Sherr, 1991), “as risk factors themselves rather than as persons at risk” (Center for Women Policy Studies, 1990). AIDS education efforts have not focused on women’s concerns (Campbell, 1990; Ickovics & Rodin, 1992). As late as 1991, the male-femaleratio in HIV research was 4:1, and inappropriate generalizations of findings on males to females were made in over 50% of studies; gender differences were often unanalyzed, even of failing to identify subjects by

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gender 25% of the time (Rabinowitz, Sechzer, Denmark, & Weeks, 1994). Even when women have been included as HIV research subjects, crucial aspects of women’s life situations such as mothering and other caregiving responsibilities for family members have been overlooked (Arnold, 1994; Stasior, Shapiro, Gore, Ware, & Hogan, 1994). More broadly, there is a general dearth of basic behavioral science research on the life situations and coping resources of ethnically diverse women and poor women, who are most at risk for HIV, that might provide tools and concepts to build research programs on HIV-related problems in women. There are several reasons, beyond the known differences in opportunistic infections (Carpenter, Mayer, Fisher, Desai, & Durand, 1989; Murrain, 1993; Pfeiffer, 1991), use of medical treatments (Lemp et al., 1992), and the disease manifestations discussed in Chapter 1, why our knowledge and interventions about coping with HIV among gay men may not apply to women. These differences are organized and described according to three levels of analysis: (1) social structure [socioeconomic status (SES), ethnicity, community, and socially structured aspects of marriage], (2) personal relationships (relational orientation and behavior, family responsibilities), and (3) individual behavior [drug use (and involvement with drug-using sexual partners), HIV awareness, and self-monitoring]. First, HIV+ women and gay men differ in several aspects of SES such as educational level, personal income, and private insurance (Hellinger, 1993). A recent major review shows that SES is directly related to health even when variables that mediate indirect relationships, such as health behaviors, psychological characteristics, and stress, are controlled (Adler et al., 1994). High-SES gay men show slower disease progression regardless of access to health care (Craib et al., 1994; Schechter et al., 1994). HIV+ gay and bisexual men may suffer financial difficulties (Kass et al., 1994), but the average HIV+ woman is more likely to be poor, and more vulnerable to stresses associated with poverty, than is the average HIV+ man, regardless of his sexual preference (e.g., Vogt, Zaza, RichmondCrum, O’Neal, & Heath-Chiozzi, 1994). Female sex workers are especially threatened by poverty, homelessness, and violence, which may take priority over HIV concerns (Blankenship, 1995). Gender differences in variables such as education, insurance status, race, exposure category, and typical physical symptoms explain gender differences in medical service use by HIV+ people (reviewed in Hellinger, 1993). Inadequate financial resources may limit women’s ability to use coping options that require money, including leaving abusive HIV+ men (Slaughter & Kanter, 1994) and getting access to good nutrition, medical care, and psychological services (Gupta & Weiss, 1993; Ward, 1993). Social-structural influences such as SES may also affect personal relationships; “poor people do not always have the luxury of honesty” in the communication of their sexual history to partners or service providers (Mays & Cochran, 1988). Too little is known about the diverse lives, constraints, and resources of poor women (Reid, 1993). Second, gender differences are often confounded with ethnic differences.

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Most studies of men have examined Caucasian gay men, with African Americans and Hispanics underrepresented. A larger proportion of HIV-infected women than gay men are members of non-European ethnic minorities; more than half are African Americans (Belgrave & Randolph, 1993), and they may carry a triple burden of isolation and stigmatization (Mays & Cochran, 1988). Thus, ethnically restricted studies seriously misrepresent the population of infected women because of known ethnic differences. For example, among Hispanic women, level of acculturation is related to differences in HIV risk (Castañeda, 1994; Main, Gómez, & Hearst, 1993). Racial identity and acculturation may be important for AfricanAmerican women as well (Landrine & Klonoff, 1992; Landrine, Klonoff, & Wilkins, 1994), especially regarding locus of control (Martin & Hall, 1992). Sexual stereotypes of African-American women and their negative impact on sexual identity development complicate risk reduction and treatment-seeking by reducing these women’s sense of personal control (Brown & McNair, 1994). AfricanAmerican family structure and functioning may differ from those of typical Anglo families, for example, by including fictive kin, which may influence the mother’s role and available resources (Greenwood, Hervis, et al., 1995). Just as ethnicity differences complicate apparent gender and sexual orientation differences, other characteristics that vary with ethnicity complicate our understanding of ethnic group differences among women. Ethnicity may be poorly or inconsistently defined, or confounded with other demographic characteristics such as SES, religion, or cultural practices including sexual behaviors (Reid, 1993; Wyatt, 1991). The white advantage in (lower) psychological distress is especially notable among low-income individuals (Kessler & Neighbors, 1986). Distress levels appear higher in low-SES blacks compared to low-SES whites and middleSES blacks (Ulbrich, Warheit, & Zimmerman, 1989), and in African-American gays and lesbians than in Caucasians (Cochran & Mays, 1994). African-Americans have shorter postdiagnosis survival times than whites; however, when the confound with SES is removed, African Americans and whites with AIDS have similar survival times (Curtis & Patrick, 1993). Both gender and ethnicity are confounded with receipt of antiretroviral treatment; women and non-EuropeanAmerican men are less likely to have received AZT or ddI. These treatments were associated with improved survival for both genders, but more strongly for women; unfortunately, this study did not provide SES data (Lemp et al., 1992). Third, urban gay men had previously created communities in major cities that quickly rose to the challenge of supporting safer sexual behavior and caring for those affected and infected with HIV, and to which they can turn for informational, practical, and emotional support (Joseph, Adib, Joseph, & Tal, 1991). These (primarily Caucasian) communities also facilitate contacts between known HIV+ gay men and others as role models for HIV illness behavior. Political organization in their own interests has historically been difficult for heterosexual women; infected women are younger, less self-sufficient, and less well supported than the

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average gay male HIV research subject (White, 1991). Thus, they have less community support for healthy adaptation to the epidemic (Enders, 1993) and less availability of HIV+ role models. Members of ethnic minority communities are more likely to turn to formal health care systems than to community-based groups (Cochran & Mays, 1991). Ethnic minority communities may be especially rejecting of anything associated with gay men, and this may make it hard for minority women to consider the possibility that they may be or become HIV-infected. Once infection is recognized, they may become further marginalized within their own communities. Fourth, the social and psychological context of risk is different because the social structuring of sexual behavior generally differs for women and for gay men; there are also ethnic/cultural group differences in the role of sexual behavior in relationships (reviewed in Amaro, 1995; O’Leary & Jemmott, 1995; Ortiz-Torres, 1995; Wyatt, 1991, 1994). Fifth, the emotional and relational context of sexual behavior may differ for women and men in general. There is a growing theoretical literature suggesting that emotional connections and felt responsibility for relationships may be more central for women than men (Gilligan, 1982; Jordan, Kaplan, Miller, Stiver, & Surrey, 1991; Miller, 1976; Moskowitz, Suh, & Desaulniers, 1994). Male partners may be pivotal in women’s initiation into drug use (reviewed in Amaro, 1995). Anticipating and coping with relationship strains and concerns for others may be a personal agenda for many women (Jenkins, 1995a) that runs parallel to both their HIV prevention efforts and their coping with seropositivity. Acute marital conflict can have psychological, physiological, and immune consequences for women (Gottman & Levenson, 1992; Kiecolt-Glaseret al., 1987; Mayne, O’Leary, McCrady, Contrada, & Labouvie, in press), and married women more often monitor and attempt to control their spouse’s health behavior than their husbands do. These findings might explain why marriage is beneficial to men’s health, but deleterious to women’s (Umberson, 1992). These gender differences in relationship impacts, along with relational power imbalances and resource differentials, complicate the direct application of rationally based models such as the health belief model, which may be effective for Caucasian men, to research on sexual behavior in women or people of other ethnicities (Amaro, 1995; Cochran & Mays, 1993). For African-American women in particular, sex may be less a futureoriented, premeditated, cognitive experience and more a present-oriented affective experience (Wyatt, 1994). Sixth, for a larger proportion of women than gay men, responsibilities for children and for the care of elderly or infirm family members intensify stress from all other sources (Armistead & Forehand, 1995; Broun, 1993; Cochran & Mays, 1989; Hoffman, 1991). The majority of women with HIV/AIDS are of reproductive age (Ellerbrock, Bush, Chamberland, & Oxtoby, 1991). They are more likely to be single parents of young children; until recently, approximately 25-30% of the

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children born to HIV+ women were infected with HIV as well. Despite the reduction in vertical transmission since the findings of the 076 clinical trial have changed standards of care, 8-10%of infants born to HIV+ women taking AZT are nevertheless HIV+. The remaining 90-92% of HIV– children may be underrecognized as victims whose mothers face enormous parenting challenges (reviewed in Armistead & Forehand, 1995; Stasior, Shapiro, & Koocher, 1995). Women may experience more internal and external pressures to minimize their own needs in order to conserve their resources and preserve their ability to care for these others (reviewed in Guzzanti, 1992; Robles, Colon, Gonzalez, & Mateos, 1990). Disclosing their serostatus to their children, fears of their children becoming stigmatized even if HIV–, and their children’s future welfare may be frequent concerns (Arnold, 1994). Thus, family relationships may become an additional stressor rather than a source of social support, and this may have health consequences (Burg & Seeman, 1994). HIV+ women may need educational or social support interventions to legitimize their self-care over their felt responsibilities to their children and other family members, including infected male partners (Center for Women Policy Studies, 1990). Seventh, women’s HIV situation in the United States is more often linked, directly or indirectly, to injection drug use and its associated non-HIV social and physical risks (Hoffman, 1991; Lown, Winkler, Fullilove, & Fullilove, 1993; O’Leary and Jemmott, 1995; Robles et al., 1990), as discussed in Chapter 4 and 8. Women with histories of injection drug use may have difficulty facing an HIV+ diagnosis without using drugs to help relieve their fear and distress, including noninjected drugs such as alcohol and crack cocaine (Arnold, 1994). The latter drugs may negatively affect infected women’s health, as well as making violent behavior more likely. Even women who do not themselves use drugs may be affected negatively by the behavior of family members who do so, if those individuals become violent, debilitated, HIV-infected, or involved with the law, or bring into the home other drug users who are. When this happens, the woman’s social context may present both increased risk and more barriers to her coping with HIV. Finally, because of the early identification of HIV as a “gay disease’’ and the resulting attunement of homosexual men and the medical system to this possibility, gay men are more likely to monitor their serostatus routinely and to be diagnosed earlier in the disease course. Women and their physicians typically overlook possible infection initially, delaying diagnosis (Arnold, 1994; Beevor & Catalan, 1993; Hellinger, 1993; Nannis et al., 1993). When diagnosis finally occurs, adaptation to diagnosis may be complicated by adaptation to active opportunistic infections. In summary, the question at the forefront in reviewing the literature on gay men for applicability to women is, how do poorer, primarily heterosexually infected or injection drug-affected, primarily non-Caucasian women with family responsibilities differ from the primarily Caucasian population of middle-class gay

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men who have created many existing HIV community services and have been the main source of our research data on stress and coping with HIV?

THE PSYCHOSOCIAL CONTEXT OF HIV IN WOMEN’S LIVES Women’s daily lives are the social and emotional context within which they adapt to HIV. To understand these adaptation processes, it is necessary to appreciate the complexity and variety of those lives. The psychosocial context of women’s lives includes stresses (both impersonal and interpersonal) and social supports. The roles of these stressors in women’s experience with HIV and AIDS are largely shaped by their ethnicity, class, and gender (Squire, 1993), which interact in complex ways to shape their adjustment to this life-threatening disease beyond merely defining their differences from gay men (Osmond et al., 1993). When HIV risk enters women’s lives, it enters lives that contain other stressors. As discussed in Chapter 1, the incidence of HIV/AIDS is disproportionately high among African-American and Hispanic/Latina women in the United States. The inner-city, poor women most affected by HIV are often facing other challenges such as employment, child care, crime (Kalichman, Hunter, & Kelly, 1992), and securing stable shelter, food, and protection for their children. Women in these ethnic groups are more likely to live in poverty (Belle, 1990), to be victims of violence, and to witness violence in their communities (Straus, Gelles, & Steinmetz, 1980). Thus, women with limited financial resources, insufficient practical support, unstable living arrangements, and less access to quality health care are the most common group coping with HIV and its treatments (Krueger, Wood, Diehr, & Maxwell, 1990). HIV/AIDS may be perceived as simply one more concern to be added to a long list of significant stressors that may pose more immediate and extreme threats (Eversley, 1988; Mays & Cochran, 1988; Nyamathi, 1992). Other demands on the woman may prevent her from acting in her own best interests to protect or care for herself (Ward, 1993). Moore, Smith, Solomon, Harrison, and Schoenbaum (1993) found no significant difference between (but many stresses for both) HIV+ and HIV– women in number of negative life events, anxiety, or depression (although the HIV– women more often started new jobs and increased their income). Poverty, homelessness, drug abuse, and victimization are associated with increased rates of physical and psychological difficulties (Adleret al., 1994; Belle, 1990; Goodman, Saxe, & Harvey, 1991; Koss, 1990; PHS Healthy People 2000,1990). How women cope with HIV is thus interwoven with how they are currently coping with other competing life stressors. Undereducation, underemployment, and unemployment are also more common among African-American and Hispanic/Latina women than among Anglo women; thus, because of poverty, women who belong to these ethnic groups more often depend on public assistance for health care insurance. In general, women of

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color have restricted access to and utilization of health care, and frequently receive lower-quality care (Curtis & Patrick, 1993; Survey ofWomen’s Health, 1993). As a result, they may undergo HIV testing later in the disease course, and may subsequently receive substandard care. For example, black women have less access to clinical trials of antiviral agents (Medrano & Cuvilly-Klopner, 1992). Previous treatment in health care institutions may have been insensitive to gender and cultural differences. Sexual, racial, and HIV-related discrimination contribute to ongoing marginalization of women’s health care needs while coping with HIV (see Amaro, 1993a,b, 1995). As noted above, the psychosocial context of HIV differs for women and gay men; it differs for women and men in general when we consider gender differences in associations between social support and physical health. Population-based prospective epidemiological studies have shown associations between structural social network support (including presence or absence of marriage) and later mortality and morbidity, both from all causes and from specific diseases (House, Landis, & Umberson, 1988). However, these relations are strongest for white non-Hispanic men, especially for the positive effect of being married; they are weaker, more complex, or absent (especially for marriage) for women and nonCaucasian men (reviewed in Shumaker & Hill, 1991). The quality, not merely the existence, of social support may be important for women’s health (see Levy et al., 1990). House, Landis, and Umberson (1988) noted methodological limitations in the social support and health literature they reviewed, with few studies gathering comparable data on both genders and frequent failures to examine gender differences. They noted that the usual social support measures may not identify gender differences in network structure and function, reciprocal and nonreciprocal support, or provider versus recipient roles. Furthermore, women’s typically denser social networks may make them more vulnerable to others’ needs and demands for caregiving (Belle, 1987), network members’ negative life events (Kessler & McLeod, 1984), and other negative outcomes that constitute network strain (Rook, 1984). Social ties may also encourage and support dysfunctional coping styles (Burg & Seeman, 1994). Women appear to be more effective providers of social support to both men and women, but this has its psychological costs to the providers (reviewed in House, Umberson, & Landis, 1988). Because of the complexity of the conceptual and methodological issues involved in the study of social support (see Berkman, 1984; Rook & Dooley, 1985; Thoits, 1982,1984), especially in application to HIV (reviewed in Green, 1993), an adequate review of the relevant basic research literature in this area is beyond the scope of this chapter. Furthermore, both the basic literature and that on HIV are strongly biased toward white North American males, for HIV, the focus is on gay males with sexual risk factors (Green, 1993). Therefore, only a narrow selection of studies of social support and physical illness will be included, selected for rele-

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vance; these will usually be applied and problem-specific in nature. An exception is studies that link social support to models of coping so as to permit integration of the two frameworks (Thoits, 1986). For example, Dunkel-Schetter, Folkman, and Lazarus (1987) linked different aspects of coping to receipt of different kinds of social support. Both the major stressors associated with HIV and the most effective coping approaches and social supports may differ among women (as among men) of different cultural groups. Differing beliefs about infectious disease, healing processes, and values for sexual relationships and family ties may add to or relieve stresses and influence the usefulness of various coping approaches in different ethnic cultural groups (Cochran & Mays, 1991; Flaskerud & Rush, 1989; Landrine & Klonoff, 1992; Lee & Fong, 1990); different approaches to primary prevention are known to be useful (e.g., Cochran & Mays, 1993; Jemmott & Jemmott, 1993; Kalichman, Kelly, Hunter, Murphy, & Tyler, 1993; Main, 1993; Mays & Cochran, 1988). Furthermore, the “sick role” may be defined differently for women and men within different ethnic groups, and still differently according to social class. The culturally defined meaning of illness and infirmity, the behaviors expected from the sufferer and from caregivers, and the allocation of group and family resources to treatment all may influence the ill person’s quality of life, treatment compliance, and survival (Eversley, 1993; Scheper-Hughes, 1990; Schussler, 1992). For example, within Anglo middle- and upper-class culture, it may be productive to target the individual as the focus of prevention and treatment interventions; but in nonEuropean ethnic minority communities, it may be more productive to focus on the face-to-face peer group within the values of their own ethnic tradition (Jemmott & Jemmott, 1993; Levine et al., 1993), to appeal to feelings of responsibility for the family or community (Mays & Cochran, 1988), to support the efforts of community organizations (Freudenberg & Trinidad, 1992), or to empower the coping efforts of the community as a whole (Ting & Carter, 1992). However, these social forms may be defined differently across ethnic cultures. Greenwood, Hervis, Mitrani, Taylor, and Szapocznik (1995) discussed the complexity of assessing family membership among African-American HIV+ women in the light of “fictive kinship.” The importance of approaching women’s adaptation from a biopsychosocial perspective cannot be overemphasized. Traditional assessment approaches that focus exclusively on diagnosing psychopathology will miss crucial aspects of women’s experience with HIV (Coons & Revenson, 1994; Coons, Spence, Walch, Harwell, & Striepe, 1995). The relational and social context in which many women with HIV function must be considered, especially their family roles (Greenwood, Szapocznik et al., 1995; Stasior et al., 1994). In spite of limited resources or services, and insufficient social support, most women demonstrate a remarkable degree of resilience in the face of multiple life stressors, including those related to HIV (Coons, Spence, Walch, et al., 1995; O’Leary & Ickovics, 1995).

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WOMEN COPING WITH ILLNESS Research literatures on stress, coping, and illness have arisen simultaneously, but from different perspectives, in social epidemiology, sociology, psychology, psychiatry, nursing, and behavioral medicine. Unfortunately, conceptual and methodological problems identified and addressed by one discipline may not be transmitted to others. Before reviewing the literatures in these areas, it is important to understand their consistencies and their limitations, especially for understanding women. There is general agreement in most disciplines about the basic concepts relevant to stress and their general definitions. Stressors (sometimes called strains) are viewed as environmental assaults, demands, obstructions, or deprivations, and are usually classified as acute (life events, e.g., natural disasters, receiving an HIV+ diagnosis) or chronic (e.g., stigmatized social status, neighborhood crowding). Stress is the experience of a gap between situational demands and available personal and social resources for responding, resulting in a state of internal arousal. Coping is the individual’s efforts (cognitive, emotional, or behavioral) to respond to and manage external demands and any resulting internal conflicts. Coping is often described as active or problem-focused (i.e., directed at the stressor, conditions maintaining it, or its functional consequences), passive/avoidant or emotionfocused (i.e., avoiding, containing, managing, or dissipating emotional sequelae of the stressor), and information-focused or meaning-focused. Social support can be viewed as isomorphic to coping in that others may assist in problem-solving, emotion management, or information/meaning-seeking. Individuals may be differentially vulnerable, resilient, or resistant depending on both social structural position and individual personality (reviewed in Aneshensel, 1992; Folkman & Lazarus, 1980; Lazarus & Folkman, 1984; O’Leary & Ickovics, 1994; Pearlin & Schooler, 1978; Thoits, 1984, 1986; Werner & Smith, 1982). Beyond this consensus, disciplines and investigators differ in their focus on chronic versus acute stressors, stylistic versus situation-specific definitions of coping, generality versus specificity of constructs, objective versus subjective measurement of stressors and social support, and social support versus social strains. Problems with conceptualization and measurement of stress that are especially relevant to the understanding of women coping with HIV include limitations in our ability to: (1) identify and measure the full range of stressors (both primary and secondary) associated with HIV disease in women; (2) identify and measure the full range of non-HIV-related stressors common in the lives of the women most at risk for HIV infection which may complicate their coping with the illness; (3) understand the range of meanings and appraisals of these stressors in the affected population; (4) remedy conceptual and technical problems in measures of appraisal and coping, including confounding with measures of distress, omission of useful conceptual distinctions, and cultural bias; (5) remedy continuing techni-

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cal problems in the measurement of social support, including confounding with measures of distress, cultural bias, and omission of reciprocity and strains in relationships as theoretical considerations. The interactions of macro- and microstress processes (reviewed in Aneshensel, 1992, for economics and occupational stress) have seldom been considered, although potentially fruitful for understanding illness-related stress processes. Stressors Typical stress inventories underrepresent life events experienced by older adults, women, ethnic minorities, and the poor. Chronic stressors other than occupational stress are understudied (reviewed in Aneshensel, 1992, and Coyne & Downey, 1991). Similarly, stressors that may differ by race/ethnicity have been overlooked. Interactions among stressors also receive scant attention, given their likely importance (e.g., Kessler & Neighbors, 1986), especially for the women most at risk for HIV, who often experience multiple chronic and acute stressors that may compound distress (Greenwood, Szapocznik, et al., 1995). In a sample of HIV+ and at-risk women from the HER study (see Chapter 8), 10-15%reported physical attack, rape, or having their children taken away during the past year (Moore, Solomon, Schoenbaum, Schuman, Boland, & Smith, 1994). Even before HIV+ diagnosis, a sample of HIV+ mothers reported having experienced assaults, rapes, witnessing murders, and having relatives and friends murdered (Mellins, Ehrhardt, Grant, Elkin, & DuBose, 1995). One step forward is the African-American Women’s Stress Scale, which enumerates stressors identified by a group of African-American women that collectively predicted depression. About half were chronic stressors, including inadequate resources, work, relationship conflict/dissatisfaction, role functioning, racism/ethnicity-related, and personal health. Acute stressors included loss or disappointment, relationship conflict, work-related, and gain or positive life events (Watts-Jones, 1990). Cervantes, Padilla, and Salgado de Snyder’s (1990, 1991) Hispanic Stress Inventory was developed to evaluate “culturally specific stressful life conditions” for both immigrant and U.S.-born Hispanics. Both versions include scales for marital stress, parenting stress, occupational/economic stress, and cultural/family conflict, but the items composing the scales differ somewhat. In addition, the immigrant version includes an immigrant stress scale that captures problems related to speaking English, fear of deportation, and guilt about family members and friends left in the country of origin. Coping The coping research literature is currently in some disarray, with conceptual and methodological criticisms continuing to emerge (e.g., Aldwin & Revenson,

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1987; Stanton et al., 1994; Stone, Greenberg, Kennedy-Moore, & Newman, 1991; reviewed in Coyne & Downey, 1991) and a variety of new measures having disparate followings (e.g., Aldwin, 1994; Carver, Scheier, & Weintraub, 1989; DunkelSchetter, Feinstein, Taylor, & Falke, 1992; Endler & Parker, 1994). Theoretical models and empirical findings differ as to whether coping is best understood as a moderator or a mediator of relations between stressors and illness (reviewed in Vingerhoets & van Heck, 1990), or whether coping is an effect of prior distress more often than it reduces future distress (reviewed in Coyne & Downey, 1991). Depending on the theoretical orientation used, the definition of coping is sometimes applied to a stable traitlike style (e.g., Carver et al., 1989), and at other times to a process that is situation-specific, strategic, and dynamic (Folkman & Lazarus, 1985; Lipowski, 1970); the two have been related at low to moderate levels (Carver & Scheier, 1994). Coping is sometimes narrow (coping means only beneficial responses) and sometimes broad (coping is any response to a stressor, regardless of its consequences; see Haan, 1977). It appears easier to identify maladaptive coping strategies than adaptive ones (e.g., Carver & Scheier, 1994); positive strategies are less evident in current measures (Aldwin & Revenson, 1987). Even measures considered “broad” in content usually tap only behavior initiated in response to the stressor (which could be called “acute coping”), and not behavior that anticipates and averts stressors, nor habitual behavior that may have stress-buffering effects on a variety of emergent events (“chronic coping,’’ such as regular exercise, routine vacations, or scheduled recreational activities). Indeed, behaviors taught in stress management courses (e.g., systematic relaxation, exercise, creative play, sensate activities, engagement with the arts or music) are typically absent from coping inventories. Measurement of coping has proven to be technically difficult because of both conceptual and validity problems. Some of these issues may affect the accuracy and completeness of existing coping measures as applied to women and members of ethnic/cultural minorities. Research in this area has been and continues to be plagued by problems of confounded measures. When scales purporting to measure one construct (such as coping) contain items that measure another construct (such as distress), statistical tests of their association will be biased in favor of the hypothesis. Common measures of stress contain items that may be symptoms of psychological disorder (Dohrenwend, Dohrenwend, Dodson, & Shrout, 1984); measures of life events include social losses such as death of a spouse that lower scores on social support inventories, and support may prevent negative events, so that stress and support are confounded (Thoits, 1982); measures of psychological distress are increasingly nonspecific and do not distinguish between outcomes of specific stressors and chronic psychological disturbance (Depue & Monroe, 1986); preexisting disturbance may influence social support levels and the occurrence of stressful events (Thoits, 1982); measures of self-produced stressors are confounded with coping ability (Epstein & Katz, 1992); and measures of coping

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contain items that measure distress and psychological symptoms (reviewed in Stanton et al., 1994). Noting in the content of coping measures the apparent assumption that emotional expression is dysfunctional, Stanton et al. (1994) devised and tested a set of unconfounded items assessing coping by “emotional approach,” positive attempts to identify, understand, and express emotions. The resulting scale was validated in a study assessing adjustment in an undergraduate sample over a 1-month interval, relating emotional approach coping to changes in depression, hostility, and life satisfaction. Women used more emotional approach coping than men, and benefited more when they did, decreasing in depression (especially for interpersonal stressors and in low-control situations) and hostility and increasing in life satisfaction. In contrast, men coping by emotional approach became more depressed and less satisfied. This study provides an important corrective to a literature that has sometimes taken a jaundiced view of emotional expression, and thus has overlooked coping processes that may be especially important for women (Banyard & Graham-Bermann, 1993). There is also disagreement about the presence and importance of gender differences in the nature and impact of coping, and the degree to which these may be related to gender differences in the nature and/or appraisal of common stressors and in physiological responses to stress (e.g., Lazarus, 1993; Stoney, Davis, & Matthews, 1987; reviewed in Vingerhoets & van Heck, 1990). The latter authors acknowledged that few studies have controlled these possible confounding variables, but concluded that women appear to use more passive, emotion-focused coping styles and men more active and problem-focused styles. However, this conclusion is suspiciously consistent with gender-role stereotypes, which are rarely discussed in these studies. It may be that self-report “stylistic” coping measures are contaminated by gender-stereotyped aspects of self-concept related to what people believe that they should do, at the expense of accurate assessment of situation-specific coping behaviors. Gender has usually been invisible in the coping literature; research on men has assumed resources of power, money, and support to assist coping, but successful coping has been attributed to individual personality rather than to those resources. The result is theories that appear gender-neutral, derived from subjects of privileged background, usually Caucasian (non-Hispanic), that overvalue the Western idea of the autonomous self and that do not represent women’s stress experiences or coping abilities, especially those of poor women (Banyard & Graham-Bermann, 1993; Coons & Revenson, 1994). Coping for women may include interdependent relationships and reciprocity (not just one-directional social support; Jordan et al., 1991), and may be shaped by its effects on intimates (Banyard & Graham-Bermann, 1993). For example, preliminary findings for a sample of HIV+ and HIV– African-American mothers suggest that more adaptive coping is associated with better conflict resolution skills (Greenwood,

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Szapocznik, et al., 1995). African Americans may rely more on religious beliefs and on social support from family and church as ways of coping; only the Seeking Social Support and Positive Reappraisal factors of the Ways of Coping Scale were replicated on a sample of black working women (Smyth & Williams, 1991). CarterObayuwana’s (1994) measure of Hope assesses educational, economic, and spiritual assets, ego strength, and human family support, and predicts successful coping with school-related and non-school-related stressors among first-year female graduate students, primarily African-American. African-American women may make different coping choices in the context of chronic stressors such as racism which impose role definitions that limit their available behavioral repertoire and do not permit direct action (Banyard & Graham-Bermann, 1993). Black women whose oral histories included life problems involving racial and/or sex discrimination used more direct instrumental coping styles, and showed flexibility by using more than one coping strategy, especially if they saw the outcome of the incident as within their control (Lykes, 1983). Racism has both economic and noneconomic impacts on women of color that complicate their coping with other stressors as well as having direct stressful effects on health if responses are internalized (Fee & Krieger, 1994). Reformulating theory to include women’s experiences would include social forces such as racism, sexism, sexual harassment, and access to (or deficits of) resources for resistance so as to provide a more realistic picture of women’s coping options. Social Support Social support seeking is a common strategy for coping with physical illness. Greenwood, Szapocznik, et al. (1995) found that HIV+ African-American mothers sought more help from others than did their HIV– counterparts. Mothers and best friends were most often cited as important (Greenwood, 1995; Jenkins, 1995b). Dunkel-Schetter et al. (1987) reported that threats to one’s health were associated with receipt of more tangible aid and support from more sources. Women noted more support sources; this was the only gender difference reported, and it is unclear whether the other associations differed by gender. For this primarily Caucasian, affluent sample, social support was usually a resource to be marshalled in the service of problem-focused coping, rather than as a substitute or alternative to problem solving or an emotional palliative, although for some, emotional support apparently replaced their own emotion-focused coping (or vice versa) (Dunkel-Schetter et al., 1987). Alternatively, perhaps the measures used were not sensitive enough to tap the dimension of empathic understanding discussed by Thoits (1986). It is unclear how gender and ethnicity may influence the measurement and meaning of social support; clearly there are ethnic differences for HIV+ women (Jenkins, 1995b,c,d; Jenkins & Galindo, 1995). Social support can be seen as coping assistance when an empathic other

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supports the individual’s coping attempts by providing instrumental support for problem-focused coping, emotional support for emotion-focused coping, and informational support for reappraisal of meaning (Thoits, 1984, 1986). Family support may be especially helpful in maintaining active coping and reducing avoidance coping (Holahan & Moos, 1987). In their community sample, persons with more personal resources such as education, income, and self-confidence and more family support used more active-behavioral coping and less avoidance coping. But social ties may also bring strains, especially for women. Negative life events of close others are sources of stress (Kessler & McLeod, 1984), and some of the associations between low social support and distress may actually be related to the debilitating impact of negative, strain-filled relationships (Coyne & Downey, 1991). In a preliminary report, African-American HIV+ and HIV– mothers who had better conflict resolution skills were more satisfied with their social support (Greenwood, Szapocznik, et al., 1995). The social support literature has largely overlooked concomitant demands and obligations from supportive social ties and the future relational costs of support use in the present. For AfricanAmerican mothers, problems in family relationships were especially troubling (Greenwood, 1995). Especially relevant to the present topic, but not addressed in this literature, is Thoits’s (1982) question, “are life events distressing because they demand readjustment in daily patterns, or are they distressing because they deprive the individual of important support resources?” (p. 155). As discussed in more detail below, the personal shame or guilt and social stigma associated with an HIV+ diagnosis may deprive HIV+ persons of support resources whether they maintain secrecy (and emotional isolation) or disclose their serostatus and risk rejection. One of the major threats of an HIV+ diagnosis for female test site clients is relationship losses and strains (Jenkins, 1993). In summary, coping, social support, and cognitive appraisal may affect psychosocial adaptation as well as disease survival. Our knowledge of how women cope with illness has been limited, in part by the assumption of no gender differences (and therefore the failure to conduct analyses comparing women and men) and in part the confounding of gender and disease in studies including illnesses more prevalent in one gender (e.g., breast cancer). It is unclear whether and how well measures of stress, coping, social support, and control developed on men capture important aspects of women’s stress experiences; there is some evidence that they are deficient in some respects (Coons & Revenson, 1994; Coons, Walch, & Malloy, 1993; Jenkins, 1993). Furthermore, the sociodemographic characteristics as well as social and relational context of women who participated in the investigations reviewed may not be representative of women coping with HIV/ AIDS. Specifically, participants in studies of coping with breast cancer have predominantly been middle-class Anglo women. When women of color are included,

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cross-racial differences have rarely been assessed and the impact of ethnicity and class on the findings seldom evaluated. Because of a history of lack of control related to forced subjugation and socioeconomic deprivation, African Americans may be predisposed to take a fatalistic stance toward illness and the medical system, and thus may be predisposed to see their illnesses as uncontrollable (Jenkins, Lamar, & Thompson-Crumble, 1993). Additional qualitative and quantitative work is needed to evaluate these aspects and to develop new measures of stress, appraisal, coping, and social support appropriate to the populations of women involved with HIV. These measures must be technically sound and practically useful (i.e., not too long, with suitable content, and worded appropriately to subjects’ language, culture, and educational level; Jenkins & Guarnaccia, 1995). Measures developed and validated on college students may not yield valid results for more heterogeneous, less educated, and less privileged community populations.

WOMEN CONFRONTING HIV INFECTION To address changes in women’s coping with HIV across the disease course, longitudinal data are necessary; but at this writing no such studies have reached publication. Nevertheless, clinical observations suggest specific crisis points in the course of the encounter with HIV/AIDS which may be particularly challenging for women and their families. In this section, following an overview of psychological aspects of HIV disease progression, clinical observations are integrated with the available research literature to identify the major sources of stress and adaptive resources at each phase of disease progression. Schemas of Psychological Aspects of HIV Disease Progression Miller and Belak (1993) describe an AIDS accommodation syndrome, a sequence of information-processing stages implicating the person’s expectancies as the traumatic discovery of infection is psychologically accommodated. The first stage, secrecy, involves stigmatization, isolation, self-blame, and subjective feelings of being contaminated and avoided by others. The stage of helplessness may bring depression, and possibly suicidality. The avoidance stage brings conscious or unconscious denial and avoidance of treatment, and is followed by accommodation, the final stage, characterized by acceptance, care-seeking, and the organization of personal affairs. Duffy (1994) presents and discusses 14 “crisis points” that may not appear in the same order for everyone, here ranked by decreasing rated stressfulness: testing procedure and results; family/friend disclosure of serostatus, and others’ illness and death (tied ranks); life-style changes required by health or financial decline;

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any physical illness; decision to be tested; medication onset; HIV illness symptoms, AIDS diagnosis, and terminal care decisions (tied ranks); having friends/ acquaintances become HIV+ or develop AIDS; and awareness of risk behavior, and obtaining medical care (tied ranks). The first hospitalization was also noted as a serious stressor, forcing confrontation with fear of death, helplessness, and depression. Both of these schemas are focused on the physical and emotional health of the individual; other people appear primarily as sources of stress or potential losses. Except for issues of serostatus disclosure, there is less emphasis on the relationship changes and family changes that might be precipitated by the HIV+ person’s physical and psychological changes. The possibility of HIV-infected children and/or spouses or partners is rarely given significant weight. Major theories of the psychology of women (Gilligan, 1982; Jordan et al., 1991) suggest that this neglect of relationship contexts may misrepresent women’s life experiences. Concerns for others’ welfare and for relationship losses and strains are more salient for women receiving HIV testing than for men (Jenkins, 1993). Research based on such an incomplete picture does not serve the development of theory or clinical practice. HIV Testing Seeking HIV testing brings its own unique stressors, and moderate levels of distress and threat (Flickstein & Keitel, 1991), but there are few studies documenting these concerns for either women or men. Published studies of psychological responses to HIV testing are almost entirely on men or do not report gender analyses (reviewed in Jacobsen, Perry, & Hirsch, 1990). Acknowledging the need for testing means admitting risk, and some women avoid disclosing even their intentions to be tested (Beevor & Catalan, 1993). For most people, this admission is at best a threat to one’s sense of personal safety and well-being in the world. It may also follow an assaultive experience such as rape or the diagnosis of a family member or partner (Sherr et al., 1993). Ethnic minority women are less likely to be tested, and more likely to cite fear of a positive result as a reason (Eversley & Newstetter, 1993). Similarly, MACS sample men who do not learn their HIV test results are more likely to be nonwhite, younger, and less educated (Aspinwall, Kemeny, Taylor, Schneider, & Dudley, 1991). At worst, HIV risk may be felt to be a “last straw” in a life already saturated with more urgent dangers that promise a more immediate and painful demise. Women at higher risk appear to differ from lower-risk women in having more severe concerns and being more depressed (Nyamathi, 1992). One ambitious cross-sectional study of this population tested a theoretical model of stress and coping and found that avoidant coping was associated with greater HIV risk behavior, both directly and via greater emotional distress, while active coping

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predicted less risk behavior (but not less emotional distress). Self-esteem predicted low emotional distress, less avoidant coping, and more active coping, both directly and via low threat appraisals. Social support predicted more emotional distress and more active coping, directly and via low threat appraisals (Nyamathi, Wayment, & Dunkel-Schetter, 1993). Although there are some gender similarities in reasons for seeking an HIV test, more studies have found differences; but these differences may be related to confounding variables as described above, which have rarely been controlled. Mood disorders have been implicated in test-seeking for both women and men (Perry et al., 1990). A London study found that most HIV– women sought testing because they had had unprotected sex or wanted a checkup for STDs, but about half of HIV+ women had become symptomatic and sought the cause; their own injection drug use was the most common risk factor for most of this HIV+ sample (Beevor & Catalan, 1993). For women in particular, the logistics of being tested have often been more complex than for men because of the gender differences described above. Service providers report that identifying an affordable, accessible test site may not be easy for poor women without insurance or publically funded health care, although the recently increased availability of CDC-funded test sites has reduced this difficulty somewhat for urban and suburban women. Women may be reluctant to be seen entering a publically HIV-identified facility, and may not wish to be seen by an HIV counselor who lives in their neighborhood or attends their church, regardless of confidentiality assurances. Transportation may be difficult to arrange for women without cars or for those who do not drive. Women with children face additional barriers. Child care may be difficult to obtain, and few testing facilities have on-site child care for clients. Public transportation is time-consuming, and more stressful if the woman must take the children with her (Enders, 1993). The long waits in public clinics and hospitals may further increase their stress. Employed women with marginal incomes may lose work time and have their pay cut, more so if public transportation and long waits are required. The necessity for two trips, one for testing and one for results, doubles the burden. For some women, the medical procedure itself is a barrier. Women not fluent in English may have concerns about the test that cannot be answered easily. Translators may not be available, and counselors without appropriate cross-cultural training and experience may be uninformed at best about clients’ culturally based concerns, and at worst may be impatient or outright prejudiced. African-American women have a history with the U.S. medical system that supports a certain skepticism about the real intent, purposes, and possible misuses of medical procedures, and whether they are in the woman’s or her family’s best interests (Cochran & Mays, 1993; Thomas & Quinn, 1991). These barriers may also impede HIV+ women’s treatment-seeking; nevertheless, they have received little research attention.

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Anticipating a Positive Test

Probably the most stressful aspect of the HIV test is the possibility that it may come back positive. Fear of a diagnosis of HIV infection may delay or prevent some at-risk individuals from obtaining HIV testing. Understanding people’s expectations of how they would cope with this situation is important for public education about HIV testing, as well as for understanding women’s actual responses to seropositivity. One study gathered data from 494 HIV test clients (Jenkins, 1993, 1995a; Jenkins & Guarnaccia, 1995; Jenkins, Jones, & Patton, 1995; Norman & Jenkins, 1993a,b). Subjects identified five kinds of major concerns associated with receiving a positive HIV test. For women (155 heterosexual, 26 lesbian), the most important of these (in order) were fear of getting sick and dying, concerns about the welfare of others and about financial dependence (tied), feared relationship losses and strains, and (a much lower priority) loss of respect (both of self and from others) (see Folkman, Lazarus, Dunkel-Schetter, DeLongis, & Gruen, 1986). African-American and Hispanic women (n = 19) rated concern for others as their highest priority, significantly higher than for the Anglo women and notably higher than concern for their own death or illness (Jenkins, 1995a). This is consistent with Eversley’s (1988) report that black and Latina women are often socialized to put others’ needs above their own because of their special roles as stabilizers of their communities in the face of passive, hostile discrimination. Compared with the samples of gay men, heterosexual women were significantly more concerned with others’ welfare and with possible relationship losses and strains (Jenkins & Guamaccia, 1995). On average, women rated spirituality as their most likely response to a positive test, with optimistic planning second most likely. Negative, self-blaming rumination, turning to the HIV community, social-emotional support, selfisolation and withdrawal, and escape fantasies were rated as moderately likely. Anger and distancing were rated least likely (Jenkins & Guarnaccia, 1995). Compared with Anglo women, African-American and Hispanic women rated negative rumination significantly higher and joining the HIV community significantly lower, and were less likely to seek social-emotional support, but they did not differ significantly in expected use of spirituality. They were also less educated and reported knowing fewer HIV+ people (Jenkins, 1995a). Compared with gay and heterosexual men, women rated spirituality and social support significantly higher as likely reactions to the test. Heterosexual women expected to experience more escape fantasies, self-isolation, and anger than either group of men (Jenkins & Guarnaccia, 1995). Differences between women and men on these dimensions may have been related to other coincidental differences between the genders rather than to true gender differences in concerns, coping, and disclosure expectations. Controlling

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for education, number of HIV+ people known, number of people known who died of AIDS, and self-rated probability of receiving an HIV+ test result eliminated the gender differences in concern for others and relationship strains and in negative rumination among HIV test site clients (Jenkins & Guarnaccia, 1995). Expected Serostatus Disclosure

Like both samples of men, women said they were most likely to tell their spouse or significant other about a positive test, and second most likely to tell casual sex partners and best friends. Siblings, mother, and father were equally likely as third priority with other friends and “many people; will probably be very public” least likely to be told. However, compared with men, women were significantly more likely to say they would tell their fathers (Jenkins et al., 1995). There were no ethnic group differences among women as to who they would tell about a positive test. Understanding Women’s Anticipated Concerns and Coping

These results show the need to build supports for HIV+ women both inside and outside of the HIV community. These spiritual and social-emotional support systems can help newly diagnosed women to plan self-improvement, discourage negative rumination and escape fantasies, and manage anger. For women of all ethnic cultures, these systems must be culturally appropriate, must help lift the burden of responsibility for others they may feel, and must discourage the negative rumination which has been associated with depression (Nolen-Hoeksema, 1987). How women expect to cope with diagnosis of HIV infection is especially important in research on HIV for three reasons, apart from the usefulness of this information in predicting how they actually cope. First, how women expect to cope with a positive test may affect their willingness to be tested. If they feel unable to cope, or believe that coping will tax resources needed for other aspects of their survival or for the care of their dependents, they may choose not to be tested or not to return for their results. If they do not have access to medical care for early intervention, they may feel that knowing their serostatus will be stressful and useless. Second, knowledge of anticipated coping patterns is useful in shaping mental health interventions because it shows the range of ways that people make coping decisions, what information they consider, and what they neglect. These data can inform interventions that are compatible with subjects’ major concerns and cultural priorities and may be seen as more acceptable, even desirable, by them. Finally, it is crucial to help newly diagnosed individuals control any HIV risk behavior that might expose another person or reexpose themselves to the virus (Temoshok, 1992). This is especially problematic for women in that they may have only marginal control over condom use.

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Receiving a Seropositive Diagnosis Women often learn their serostatus incidental to other medical procedures or treatments, e.g., during examinations on entering drug treatment programs, prenatal testing, treatment for chronic vaginal infections or abnormal Pap smears, or following a spouse/partner’s diagnosis or the birth of a baby who is HIV+ (e.g., Sherr et al., 1993). Women are often unaware of or misjudge their risk factors, and thus the diagnosis is often unexpected and unbuffered by the kinds of community supports available to HIV+ gay men. For women who sought out testing, the period of uncertainty can be extremely stressful, as it is for men awaiting HIV test results (Ironson et al., 1990; Mansson, 1990). Common anxieties include the nature of the disease process, its progression, and treatment concerns; these anxieties are stimulated by the range and variety of physical symptoms (Fullilove, 1989). On average, HIV+ women are sicker than men when they begin receiving formal health care services; physicians may overlook the possibility of HIV disease much longer for women than for men (Arnold, 1994; Sherr et al., 1993; reviewed in Hellinger, 1993). However, a recent report of long-surviving (3-7 years) asymptomatic HIV+ women showed that 27% remained immunologically stable and asymptomatic during that period (Carpenter, Flanigan, & Mayer, 1994). The stress of receiving the diagnosis may be compounded by physicians’ discomfort with giving a “death sentence” (Mansson, 1990). Initial Reactions

Evidence from clinical literature and preliminary research findings underscores the variability of responses women may have when learning about their serostatus. Symptoms of acute psychological trauma such as nightmares, numbing, intrusive thoughts, depersonalization, and derealization may appear in African-American, Anglo, and Hispanic women (Jenkins, 1995d; Jenkins & Galindo, 1995). Acceptance of the HIV+ diagnosis is less common for women than for gay men (Couvaras et al., 1994). For some women, their child and/or partner may be infected as well, and their diagnosis may be linked to hers, compounding stress within the family (Coleman, 1994; Sherr et al., 1992). Some women may respond to their new diagnosis with feelings of shame, guilt, fear, and anger (James, 1988; Morris et al., 1994), consistent with the self-blaming rumination anticipated by test site clients (Jenkins & Guarnaccia, 1995). Others may feel hopeless, isolated, and depressed (Morris et al., 1994), and may have suicidal thoughts (Amold, 1994) or attempts (Jenkins, 1995b; Sherr et al., 1993). Some reduce sexual risks and drug use (Minkoff, Landesman, DeHovitz, Duerr, & Feldman, 1993); others may increase sexual activity, or go on an alcohol or drug binge (Rosen & Blank, 1992). Still others reach out for emotional and informa-

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tional support, including information about both HIV infection and general health care and nutrition. A few may make major life changes in a positive direction, including entering drug treatment programs, or finding a higher existential, philosophical, or religious meaning (Arnold, 1994; Taylor-Brown, Blackburn, et al., 1995). For most, as for the test site clients, who and how to tell about their diagnosis is a major concern because of the possible impact on their relationships. As anticipated by test site clients, disclosure of HIV+ serostatus is an immediate concern for many women and men receiving positive results. Decisions about disclosure are common stressors for women (Semple et al., 1993). There may be concerns about confidentiality, discrimination, and the recipient of disclosure (Moneyham, Sials, Dimi, et al., 1995). Cultural attitudes and illness roles shape the timing and manner iof disclosure (Marks et al., 1992; Simoni, Mason, Marks, Ruiz, Reed, & Richardson, 1995). A small sample of HIV+ Mexican immigrant women said they feared the consequences for the whole family if the community should learn their status, or for aggravated tensions within the family if certain male family members should be told (Jenkins & Galindo, 1995). These concerns were not mentioned by Anglo or African-American women (Jenkins, 1995b). Disclosure may be instrumental to seeking social support from family, friends, and/or health care providers (Clark, Moore, & Warren, 1994), or may be seen as an ethical responsibility for the health of lovers (Simoni, Cantero, Marks, Mason, & Richardson, 1995). A sample of HIV+ new mothers studied by Miles, D’Auria, and Christian (1995) did not disclose widely (only to about half of close family members, less often to siblings, other relations, or friends), but were generally satisfied with the resulting support. Gielen, O’Campo, Faden, and Eke’s (1995) sample of 43 African-American women reported being more accepted and supported after disclosing than they had expected; however, 6% also experienced violence as a reaction. It may also be a matter of concern in less supportive situations (such as some job situations and families) in which eventual disclosure may be necessary or forced. Disclosure may be avoided because HIV+ women fear loss of child custody if identified (Taylor-Brown, Williams, & Metzger, cited in Pizzi, 1992). Others fear violent partners (Gielen et al., 1995). Mexican immigrant and undocumented women maintain secrecy because of fear of deportation (Jenkins & Galindo, 1995). Beevor and Catalan (1993) reported that 22% of their sample of HIV+ women told no one of their test results. Simoni, Mason, Marks, Ruiz, Reed, and Richardson (1995) found that almost 13% of their sample of 65 women had told no one, and 30% had told only one person, citing concerns about stigma, parents’ worrying, and their ignorance about HIV as reasons for not telling parents, and avoiding rejection and keeping secrecy as reasons for not telling lovers and friends (concerns also reported by Jenkins & Galindo, 1995). Spanish-speaking Latina women disclosed their serostatus to about half as many persons as did English-speaking Latina, African-American, or Anglo women. Clark, Moore, and Warren (1994)

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expected that secrecy about serostatus would be associated with depressed mood in their large (N = 239) sample of HIV+ women, especially for those who had a confidant. Contrary to expectations, greater depression was related to disclosing serostatus without having a confidant, which was interpreted as perhaps related to encountering more negative reactions to disclosure outside of a trusting relationship or to enhanced awareness of the lack of a confidant under stressful conditions. The least depressed women had a confidant and did not maintain secrecy (Clark, Schoenbaum, Solomon, et al., 1995). Most women with HIV/AIDS cope with the illness in the context of other relationships. HIV+ women more often are married and/or living with steady sexual partners than a matched sample of gay men, whereas the latter more often seek out and find new sexual partners (Nannis et al., 1993). Consistent with the concerns of female HIV test clients reported above, women may be worried about how disclosure of their HIV infection will affect their personal relationships within the family. Their drug use, for example, may have been a secret. Others will feel ashamed or guilty about past drug use and sexual behavior which may have placed them at risk for HIV (Rosen & Blank, 1992). Still others are unsure about how to negotiate physical and sexual intimacy with partners after disclosure. This may be harder for women who are angry with male partners who apparently infected them (Coleman, 1994). In addition, they may actively fear the social stigma, loss of respect, and discrimination associated with HIV and AIDS (Arnold, 1994; Coleman, 1994; Hackl, Kalichman, & Somali, 1995; Jenkins & Galindo, 1995), including possible effects of these on their children (reviewed in Armistead and Forehand, 1995). Seronegative children’s long-term needs may pose further parenting challenges (Stasior et al., 1995). Two-thirds of an ethnically diverse sample of women coping with HIV and AIDS expressed interest in additional information about how to disclose their serostatus (Coons et al., 1993). Disclosing to partners may be particularly problematic in relationships involving domestic violence. Although gay and lesbian relationships are not immune to physical and emotional abuse, and men in heterosexual relationships are sometimes victims as well, in the vast majority of domestic violence cases involving major physical injury or death, the victim is a woman. HIV+ women whose partners are notified of their status may be at more immediate risk from violence than either they or their partners are from AIDS (Gielen et al., 1995). Of 64 HIV+ pregnant women, 53% noted previous domestic violence, 24% during their current pregnancy and 38% from their current partners (Shannon, Benson, Dahrouge, Pantell, & Landers, 1995). Careful weighing of relative benefits and harms to both parties must precede notification of HIV+ women’s partners (North & Rothenberg, 1993; Rothenberg & Paskey, 1995). Deciding how and when to tell their children may be especially stressful for women because of concerns about both the child’s best interests and the best interests of the parent-childrelationship (Jenkins, 1995b). The child’s maturity,

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need to know, and ability to accept the mother’s condition and cope with its stigma may all be weighed (Arnold, 1994), along with the presence of non-HIV stressors and the child’s ability to “keep the secret” (Armistead & Forehand, 1995). In a sample of 55 HIV+ mothers (64% African American, 21% Latina; 85% heterosexually infected), 55% disclosed their diagnosis to their (noninfected) children, more than half immediately. Women who disclosed said they wanted to avoid “family secrets,” prepare their children psychologically, prevent indirect disclosure, and gain greater intimacy with their children. Nondisclosers feared harming their children, wanted to protect their childhood, believed they could not understand, and feared their children’s rejection (Pliskin, Farrell, Crandles, & DeHovitz, 1993). Even disclosure to medical professionals may be problematic, given the barriers to women’s pursuit of health care and psychosocial support. Women may underreport certain sexual practices to an interviewer compared to a self-report questionnaire (Moore et al., 1995). Many women may feel that community HIV support and health care networks developed by and for white gay men cannot understand or meet their different needs (Hutchinson, 1992; Taylor-Brown, Williams, & Metzger, cited in Pizzi, 1992; Trejo, 1993). Existing HIV social services often do not address HIV+ women’s concerns, for example regarding child care and children’s services (Campbell, 1990). African-American and Hispanic women may distrust health care services because of historical relationships (TaylorBrown, Williams, & Metzger, cited in Pizzi, 1992; Thomas & Quinn, 1991). HIV+ health services which are insensitive to cultural differences among women coping with HIV may be ineffective in meeting the needs of a range of women. Depression is a particular risk for HIV+ women who may be caring for HIV+ children (O’Leary, Scudder, & Frenkel, 1991). Regardless of serostatus, women are at high relative risk for depression compared with men, especially if they are poor (McGrath, Keita, Strickland, & Russo, 1990). Depression in women has been associated with life event stress and absence of social support, especially the absence of a confidant (Brown & Harris, 1989). In a large sample of HIV+ women, depression was associated with lower education, IDU, low CD4 count, being in psychotherapy, and not (otherwise) having a confidant (Clark et al., 1994). Adequate social support may buffer stress and minimize depression and perhaps disease in both general and HIV+ populations (Cohen, 1991; Kelly et al., 1993; Lin, Woelfel, & Light, 1985). But previous social supports and familiar social roles may be lost if family and friends are fearful of and alienated by the HIV+ diagnosis (van Servellen, Nyamathi, & Mannion, 1989); they may be ill as well. Previously supportive relationships may become problematic and require coping efforts to reduce relationship strain (Coleman, 1994; Jenkins, 1995b). Unfortunately, as expected by women receiving HIV tests (Jenkins & Guarnaccia, 1995), newly diagnosed women tend to withdraw for weeks or even years, disclosing to no one or few people and not pursuing medical or psychological services, even support groups for HIV+ people (Jenkins, 1995c; Sherr et al., 1993).

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This is consistent with Klonoff and Landrine’s (1994) finding that AIDS may be attributed to punitive causes, and this attribution is related to avoiding people. Later on, HIV+ support groups are highly valued (Cambridge & Mallory, 1995; Jenkins, 1995c). Women appreciate hearing firsthand about the disease process and what to expect, and value receiving health-care information and access to help, but may also be troubled by encountering persons in advanced stages of HIV disease (Siegel, 1995). Women in more advanced stages of disease value the opportunities to make generative contributions in support groups by becoming educators for other HIV+ women, care providers, and the community (Taylor-Brown, Blackburn, et al., 1995). Preventing depression may be especially important for newly HIV+ women because there is evidence for associations between depression and immune system functioning (Burack et al., 1993; reviewed in Herbert & Cohen, 1993, and in Weisse, 1992), although there are also negative findings (e.g., Lyketsos et al., 1993). Few of these studies have included women as subjects or reported gender comparisons. In one investigation, associations found for men were not present for women (Evans et al., 1992). Assuming that depression is most likely when one feels helpless in the face of an uncontrollable stressor such as an HIV+ diagnosis, perceived coping inefficacy should be related to lower immune functioning, and self-efficacy to better immune functioning. This hypothesis was supported in an almost entirely female sample of subjects who learned efficacious responses to their snake phobia (Wiedenfeld et al., 1990), but has not yet been tested in published studies of HIV+ women. Furthermore, HIV+ African-American women reportedly perceive they have less control over their own and their children’s health, the threat of AIDS, their romantic relationships, and sexual behaviors than do HIV– African-American women (Hinkle, Antoni, Schneiderman, Ironson, & Efantis, 1993). It is unclear whether this finding results from a relation between low self-efficacy and higher transmission risk, or whether the HIV+ diagnosis and/or subsequent AIDS-related symptoms reduce perceived control. Both seem likely, and both raise the urgency of exploring possible links to immune function for women. As described in Chapter 1, IDU transmission accounts for about half of the known HIV infections among women. It is currently the primary mode of transmission for African-American, Hispanic/Latina, and Caucasian women, although heterosexual transmission is accelerating. For many women, entering drug treatment incidentally reveals their serostatus. Some find this news a compelling reason to stay off drugs; others will continue to abuse substances throughout their illness. Even women without a history of IDU may actively use and/or abuse alcohol and other drugs prior to and after diagnosis (Coons, Spence, Harwell, et al., 1995; James, 1988; Simoni, Cantero, et al., 1995), perhaps self-medicating with drugs to avoid experiencing feelings associated with the diagnosis as well as other negative experiences and losses. In a sample of 132 HIV+ Latina (61%), African-American

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(26%), and Anglo (9%) women, 57% had used drugs (including alcohol and marijuana) since receiving their diagnosis, and 36% in the past 2 months. More acculturated Latinas were more likely to use drugs (also found by Nyamathi, Stein, & Brecht, 1995), suggesting that interventions for this group might emphasize the healthful aspects of traditional culture. Facilitating access to drug detox, treatment centers, and aftercare may be a prerequisite, because otherwise these women may be unable to respond adaptively to their serostatus. However, many treatment programs have long waiting lists, turn away new clients, do not provide treatment for women, or cannot accommodate their dependent children. Some newly infected women will seek additional material on HIV and its treatment from the outset; others will wait. Over half of a group of women coping with HIV at different points in the disease course desired additional information about medical care (Coons, McCown, et al., 1993). Unfortunately, not all women readily raise concerns with their health care providers. Little is known about the types of women who will ask for or seek detailed information about HIV and its treatment at the time of diagnosis in contrast to those who do not (but see Miller, 1987). Women differ in their responses to the information typically provided during diagnostic procedures such as colposcopy (Miller & Mangan, 1983). Another group of women with HIV seize the opportunity to make positive life changes in response to learning their serostatus. Efforts to improve their general health and diet, decrease drug use, enter drug detox and treatment, and seek consistent health care are examples of strategies used by women who feel sufficiently empowered to make positive changes in the midst of a crisis. Other women may return for their GED or seek employment in an effort to support their children. These changes are frequently encouraged by health care professionals, other women in residential drug treatment centers, and family members or friends. Improved self-care may enhance self-esteem and self-efficacy, and result in an increased sense of control over the course of HIV (Murphy & Kelly, 1994). Involvement in HIV-related prevention activities in the community also allows some women to feel that they may help others by sharing their experience. Initiation of Prophylactic Treatment

Depending on CD4 T-lymphocyte count, treatment with an antiviral agent and prophylaxis for PCP and other opportunistic infections may begin near the time of diagnosis or months or years later. Some women may not have treatment initially if their CD4 count is above 500 cells/mm3. Asymptomatic women given standard treatments for emergent problems may show slow disease progression over 3-7years; in one study, 27% remained asymptomatic (Carpenter et al., 1994). Those who are diagnosed later in the course of their illness may start treatment promptly. However, controlling for diagnosis, HIV+ women and adolescent girls

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receive fewer medical services, including inpatient and outpatient care as well as medications such as AZT, even when income, race, insurance, and geographic location are controlled (Hellinger, 1993). Progression to AIDS The development of HIV and AIDS-related symptoms may be particularly distressing for some women (Coons, Harwell, et al., 1995; Coons, Spence, Walch, et al., 1995; Harwell, Coons, Spence, Striepe, Ayubi, & Manubay, 1995; Murphy & Kelly, 1994). Over 70% of Coons and colleagues’ sample reported feeling fatigued. Hospitalization(s) for PCP and weight loss may be alarming. Symptoms such as fatigue, diarrhea, paresthesias, and peripheral neuropathy may also interfere with activities of daily living. Their ability to care for family members or maintain employment may be diminished. Changes in functional status may be accompanied by a marked decrease in self-esteem if a woman’s identity is highly connected to her role as a mother and/or to her occupation (Rosen & Blank, 1992). Coons, Spence, Walch, et al. (1995) found a significant relationship between the number and severity of physical symptoms and the Brief Symptom Inventory depression subscale and global ratings in a small sample of ethnically diverse women coping with HIV/AIDS at different points in the disease course. In addition, Fleishman and Fogel (1994) found a relationship between limitations in physical functioning and distress in their large sample of persons with AIDS. As women cope with the diagnosis of AIDS, they may also experience more uncertainty about their health status from day to day. Common coping strategies include self-care, reducing avoidable stresses, seeing physicians, listening to their bodies more, seeking social support, taking a positive attitude, and spiritual activities (Coleman, 1994). They may voice concerns about becoming seriously ill and dependent on others for help and care, consistent with the findings for test site clients (Jenkins, 1993). Supportive HIV– spouses may be highly valued, but African-American women in particular noted that their felt dependency was very emotionally problematic for them (Jenkins, 1995c). Issues of grief and loss (Rosen & Blank, 1992) are clearly present throughout the course of HIV, but may be more pronounced as women cope with advanced disease. Many women with AIDS will be caretaking for infected family members and/or coping with the loss of a child or partner from the same disease (Coleman, 1994). In addition, some women will have lost other children, reflecting higher rates of infant mortality among women living in poverty. Sometimes it is necessary for women to give up the care of their children to others as their infirmity increases (Eversley, 1993). Furthermore, the high rates of homicide among young people in urban communities are such that some women will have also lost siblings and other family members as a result of violence. Women who injected drugs may have also

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lost friends in their drug community. Expressions of grief, however, may differ markedly as a function of gender, ethnicity, culture, and religion (McGoldrick, Pearce, & Giordano, 1982). As anticipated by the test site clients discussed earlier, women are likely to have significant concerns about initial disclosure of their serostatus to family members, partners, children, co-workers, and friends as well as some health care providers. These concerns are reactivated by the appearance of visible symptoms such as weight loss and rashes, or decreased functional status (Miles, D’Auria, & Christian, 1995). Among HIV+ Hispanic men, disclosure increased with disease severity, and disclosure to less significant others (e.g., employers, religious leaders) increased with negative changes in appearance (Marks et al., 1992). These findings seem likely to generalize to women. Over 75% of a group of 31 HIV+ women with different ethnic backgrounds desired additional information about disclosure to others (Coons, McCown, et al., 1993). They were concerned about who to tell, when to disclose, and dealing with the response of the other individual. Some women fear that disclosure will result in family members’ pushing them away—especially at times when they are symptomatic and in need of significant care, contact, and support. Renewed concerns about abandonment and HIV-related discrimination may be expressed (Coleman, 1994). HIV, like cancer, has been called a “family disease” (Medrano & CuvillyKlopner, 1992; Zuckerman & Gordon, 1988), consistent with the prominent concern for others expressed by women receiving testing (Jenkins, 1993). Part of that concern of HIV+ women reflects the wish not to be a burden on their families, to cause them emotional stress, or to bring them grief and shame (Coleman, 1994). The second most common mode of HIV transmission among women is through heterosexual contact; consequently, a number of women care for their HIVinfected partner as he becomes ill (Coleman, 1994). In addition, approximately 25-30%of children born to HIV+ women may become infected prenatally unless prenatal AZT is taken, in which case the infection rate drops to 8-10%. “Family,” like “community” (Cochran & Mays, 1991), needs to be defined by women themselves to respect the range of relationships and arrangements common across women in different cultural and socioeconomic groups. Irrespective of how family is defined, some women may harbor fears of transmission to other noninfected family members (Chung & Magraw, 1992; Coleman, 1994; Rosen & Blank, 1992). Chung and Magraw (1992) provide several examples of fears of transmission expressed by women during a group meeting of HIV+ women. They described an individual who was concerned about her school-age child and had him tested in spite of low risk. Another woman was concerned about a partner who borrowed her razor blades. Another group member was concerned about a partner who refused to wear a condom, although he was aware of her serostatus. As women experience more disability from a range of symptoms, planning

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for the future becomes a more significant concern. Loss of housing and jobs may increase anxiety and distress; financial support for daily needs as well as health care becomes a higher priority. The women in Coleman’s (1994) sample reported coping with financial concerns primarily in problem-focused ways, but sometimes using social support, spiritual activities, and taking a positive attitude. Home health care may become necessary, and eventually may not be sufficient (van Servellen, Lewis, & Leake, 1990). Over 60% of a sample of 35 women with HIV expressed interest in additional information about making plans for the future as well as legal matters (Coons, McCown, et al., 1993). Examples of legal concerns include custody or guardianship issues, probation issues, divorce, and HIV-related discrimination. Many women are particularly concerned about who will take care of their ill and well children as well as other extended family members when they become too sick or die. Coleman’s (1994) qualitative analysis identified five major themes regarding children expressed by the mothers in her sample of 51 HIV+ women. These included fear that children must grow up without them after they die; wishes for their children’s future health and happiness; wishes for them to become educated (in school and life); concern about being a good mother; and hope that they will not become HIV-infected. Making arrangements for the care of children is likely to be an extremely distressing experience for many women and their families. Coping with the Health Care System

Connecting women with case managers who can help them to access available community resources is frequently necessary to secure stable housing, financial assistance, transportation, and reimbursement of health care visits and medication (Eversley, 1993). Proactive case management may help women manage both their life situations and the social service system. HIV+ women’s priorities may differ from the health-care system’s emphasis on aspects of disease progression; a sample of 86 ethnically diverse HIV+ women wanted more attention to specific symptoms and more public education about AIDS (Eversley, 1995). An ethnically diverse sample of symptomatic HIV+ women indicated that a positive relationship with the service provider was the most valuable aspect of services. Difficulties with accessibility (e.g., transportation and child care problems) were the greatest impediments (Klapholz, Sugden, Coleman, Turner, & Dugan, 1993). Clinical experience and preliminary research data (Coons, McCown, et al., 1993) suggest that women are frequently in need of a range of services, especially to support their family roles (Greenwood, 1995; Greenwood, Szapocznik, McIntosh, et al., 1995; Stasior, 1994; Stasior et al., 1994). Psychosocial interventions may be extremely valuable for women coping with HIV as well as their family members. Treatment may involve crisis interven-

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tion, suicide assessment, individual and family counseling and therapy, substance abuse detox and treatment, HIV and violence prevention education, psychopharmacological treatment, and stress management instruction (see Murphy and Kelly, 1994). In addition, support groups as well as peer counseling may decrease women’s sense of isolation and enhance effective problem-solving (Chung & McGraw, 1992). The clergy can also be of assistance to those with affiliations to a particular church or religion. The type(s) of psychosocial interventions that may be helpful to women and their families may change over the course of the illness. For example, the experience of hospitalization presents its own unique stressors for HIV+ persons, including loss of independence, separation from loved ones, feelings of abandonment, medication problems, and concerns about impersonal or discriminatory treatment (van Servellen et al., 1989, 1990). Hospitalized HIV+ women’s emotional responses to their illness (such as shame and resistance to concern and attention) and their stigmatized life-styles (e.g., drug abuse, prostitution) may distance their caregivers. They may be discharged earlier than men because of family responsibilities or insurance gaps, and may not query or understand procedures or regimen adherence requirements if they are less educated or there are language barriers. Increased social worker support may be needed to offset low levels of social and community support for HIV+ women (Mouton et al., 1994). Women may also feel that their concerns and questions are not heard or adequately answered, and in response they may resist treatment regimens (Arnold, 1994). To promote optimal health and mental health outcomes for women, interventions must be appropriately tailored to the individual or family and must be culturally specific. Furthermore, they need to have “maximum contextual relevance” (Medrano & Cuvilly-Klopner, 1992, p. 126). Treatment approaches that fail to recognize the social context in which women live are likely to be ineffective. Their ethnicity, SES, problem-solving ability, drug use, availability of social support, and caretaking responsibilities could all affect the outcome of psychosocial treatment and, consequently, their quality of life. Women may be especially inclined to pursue alternatives to the medical system when they feel their needs are not respected, but also when these alternatives are more consistent with their values and beliefs. Guillory, Sowell, Cohen, Demi, and Moneyham (1994) investigated HIV+ southern women’s alternative health practices, medical regimen adherence, spirituality, and quality of life issues using content analysis of data from eight focus groups (46 women). They identified six spirituality themes, and noted that medical noncompliance themes included “the medication makes me feel bad,” lack of funds, and use of home remedies. For a mixed community sample of African-American women, AIDS was seen as having both natural causes (including God’s will and punishment for sin) and supernatural causes (most often witchcraft). Illnesses caused by God’s will require intercession through prayer; nurses and physicians are regarded as powerless over

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them. The most efficacious healers are those whose powers are bestowed by God (Flaskerud & Rush, 1989). In a primarily Puerto-Rican, 25% female, sample of HIV+ Hispanics receiving medical care, only 53% saw the HIV virus as causing their illness; 31% believed that good and evil spirits were causal, and 57% used spiritual practices (espiritismo/santeria) for treatment (Suarez, Raffaelli, O’Leary, & LoConte, 1993). The meaning of death and other existential losses may differ among individuals, and may influence their choice of coping strategies (Schussler, 1992). Hoffman’s (1991) description of AIDS as “about loss” of personal “health, vitality, sensuality, and career—and … the future as one had envisioned it” may better fit the predominantly young, Anglo, gay males who were the U.S. AIDS epidemic’s early victims. Many of the women studied by Osmond et al. (1993) may have already experienced these losses regardless of their serostatus, or were never privileged to attain these resources to begin with. For other cultural groups, death may first mean loss of relationships with others, or concern about the impact of one’s death on one’s dependents or one’s community.

STUDIES OF STRESS, COPING, SOCIAL SUPPORT, AND ADAPTATION There are few systematic studies of stresses (other than disclosure and pregnancy) associated specifically with initial HIV+ diagnosis for women, of how newly HIV+ women confront their diagnosis, or of whether different social support and coping patterns are related to psychological outcomes for women across the disease course. However, several studies reported findings on both genders. Unfortunately, time since diagnosis is rarely examined in these studies. Thus, at this time there is little evidence for or against an evolving pattern of psychological adaptation to HIV that might parallel the physical disease course. Identifying such a pattern is complicated by the wide variation among individuals in timing of diagnosis relative to disease progression. Therefore, because studies that might provide evidence for such patterns have been integrated into the foregoing or later sections, the studies of HIV+ persons discussed in the following sections usually do not distinguish among stages of disease progression. The sections that follow immediately summarize the literature on stress, coping, and social support in both genders, then on HIV+ women. Studies of Both Genders Compared to the literature on gay men, the following studies are more complex and integrative in jointly examining stressors, coping, and psychological symptoms. However, their analytic designs are usually simple, reporting gender

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differences in these variables rather than comparing patterns of prediction from stress through coping to symptoms among women with the parallel patterns for men. In addition, the differences between women and gay men discussed earlier in this chapter (SES, ethnicity, HIV community contact, sexual relationships, family responsibilities, drug involvement, and illness stage) are rarely controlled. In small samples of heterosexual non-IDU HIV+ (n = 24) and HIV– (n = 26) women and men, Pergami, Gala, Burgess, Invernizzi, and Catalan (1994) found neither gender nor serostatus differences in demographics, psychiatric history, current psychiatric distress, social supports, or locus of control; however, small sample size limited statistical power to detect differences. Comparing matched (age, education, and illness stage) samples of HIV+ military men and women, Nannis et al. (1993) found their women to be less depressed and anxious than their men, and less likely to suppress negative feelings and identify with a dysfunctional helpless/hopeless coping style. The women also indicated greater availability, satisfaction, and use of their social supports than did the men. In contrast, a largesample (N=736) study of coping and depressive symptoms in a large communitybased sample of adults with AIDS (9% female, 69% White, 57% gay or bisexual; Fleishman & Fogel, 1994) showed that women reported higher levels of depression symptoms than did men. In a preliminary study of a small sample of women ( n = 12) and men (gay and heterosexual, n = 12 in each group), mostly white and matched on age, Straits-Troster et al. (1992) found that HIV+ women used more self-controlling coping strategies than did HIV+ heterosexual men, and more escape-avoidance strategies than either gay or heterosexual men. Women and gay men reported more symptoms of depression than did heterosexual men; but the latter group was asymptomatic, whereas half of the women and gay men were at CDC stages IVA (constitutional symptoms) and IVC1, which might explain this difference. Although this evidence is too scanty to draw definite conclusions, it appears that when men and women are matched in the research design to control extraneous differences (in illness stage, SES, and/or other demographics) that may appear, HIV+ women appear more functional than HIV+ men; in unmatched samples, women appear less functional. Similar controls altered the findings of the test site client study described above (Jenkins & Guarnaccia, 1995). Thus, findings of gender differences in psychiatric symptoms, and likewise in coping and positive adaptation, may be related to these extraneous gender differences. Three mixed-gender studies related coping to symptoms, but only one assessed gender differences. Fleishman and Fogel (1994) found that positive coping predicted decreases in depression symptoms 11 months later, but this pattern was not tested separately for men and women, and may not characterize the smaller female sample. In their mixed-gender longitudinal sample, Solano, Costa, Salvati, Coda, and Bertini (1993) reported that subjects who had wanted to react with “fighting spirit” later showed less clinical evolution of symptoms, especially

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among those who were initially in better immunological condition; those who had reacted with denial/depression later showed more clinical evolution. However, no tests for gender differences were reported. Some evidence for consistency of associations across women and gay men was presented by Crystal, Bilder, Merzel, and Sambamoorthi (1993), who showed that escape-avoidance coping was associated with higher depression and anxiety in both their female and male 90% AIDSdiagnosed samples. Studies of Women It seems likely that preexisting psychological conditions may influence women’s responses to the stress of HIV+ diagnosis. However, there is contrary evidence for men (Ostrow, Monjan, et al., 1989). This section reviews first the literature on psychiatric diagnoses in HIV+ women, then that on stressors and on coping resources, then studies relating stressors and coping (including social support) to distress. Relatively few studies have evaluated the presence of psychiatric symptomatology in representative samples of women with HIV/AIDS. Because most studies in this area gathered data from subjects who had already received their serostatus diagnosis, we cannot easily determine whether such conditions were preexisting or whether they are reactions to receiving the diagnosis. Perry et al. (1990) found that male and female subjects seeking HIV testing more often met diagnostic criteria for current and lifetime mood disorders (before receiving results) than did the comparison sample of persons from the Epidemiologic Catchment Area community samples. Women more often were diagnosed with current alcohol and other noninjection substance dependence; HIV+ subjects had no more Axis I diagnoses than did the seronegatives. In Mellins et al.’s (1995) nonclinical sample of HIV+ mothers, 37 of the 40 women had a previous mental health history but had not received professional treatment; 20% met diagnostic criteria for current disorders. Although symptoms of depression have often been reported in HIV+ women, accurate assessment may be complicated by genderspecific cultural pressures as well as by physical symptoms that may reflect somatization (Zorrilla, Guevarra, Martinez, Santiago, Colon, & Schute, 1995). One cross-sectional investigation evaluated rates of psychiatric disorders, social support, and sexual behavior in 20 asymptomatic non-IDU women in the military (Brown & Rundell, 1990). Thirty-five to fifty percent of the women met DSM-III (R) criteria for mild psychiatric disorders. Hypoactive sexual desire disorder (20%), adjustment disorders (15%), and mild organic mental disorders (10%) were observed. The sample, however, was small, employed, educated, and not IDUs, and thus not representative of most females with HIV/AIDS. Women in this sample were being seen every 6-18months with a structured clinical diagnostic interview. A follow-up report of 29 women showed significantly more diag-

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nosed with hypoactive sexual desire disorder. None, however, had been psychiatrically hospitalized, Hamilton Anxiety and Depression ratings were low, and none reported suicidal behavior (Brown & Rundell, 1993). Brown and Rundell (1989) reported that suicidal ideation is much rarer in a sample of HIV+ Air Force women (N = 15) than in their HIV+ men, which they attributed tentatively to the lower psychiatric morbidity among their women, especially for alcohol abuse and dependence. In other settings, both ideation and attempts have been reported (Jenkins, 1995c; Sherr et al., 1993). James (1988) evaluated psychiatric symptomatology in 15 HIV+ pregnant women referred for psychiatric evaluations. Seven had acquired HIV from IDU alone, and five had a history of IDU and contact with a high-risk male. Based on a clinical interview, 87% had a diagnosis involving alcohol or drug abuse or dependence, 20% had mood disorders, and 53% had an adjustment disorder. This sample referred for identified problems cannot be considered representative of HIV+ women; women who were not referred or were HIV– may have also had transient or ongoing difficulties with substance use or abuse, depression, and anxiety. Others may have adjusted to their pregnancy without significant distress. Preliminary data from a sample of 41 ethnically diverse women coping with HIV/ AIDS at different points in the illness course found a wide range of depression scores on the Beck Depression Inventory and Brief Symptom Inventory (Coons, Spence, Walch, et al., 1995). Future analyses will evaluate whether the presence and severity of symptoms change as a function of disease severity and treatment or other challenges faced by women with limited resources. The major stresses reported by HIV+ women varied according to the composition and heterogeneity of the sample. The HER Study described in Chapter 8 compared 353 HIV+ women with 339 HIV– women, and found that the latter cited more stressful life events in the previous year, including financial problems (63%), relationship breakup (45%), homelessness (22%), physical or sexual attack (11%), and having children taken away (9%). However, the groups did not differ on psychological distress (Moore, Solomon, Schoenbaum, et al., 1995). Both number of events and distress were related to IDU, crack use, and multiple sex partners for both groups. HIV-related and secondary stressors were examined in a qualitative study of 31 HIV+ heterosexual non-IDU women (Semple et al., 1993). The most common stressors in this 81% white, well-educated sample were ongoing medical or psychiatric treatment (65%) and chronic financial stress (45%). Other frequently reported primary health stressors included learning one’s serostatus, and gynecological problems. Common family stressors included disclosing serostatus to family members and childrearing problems. Disclosing HIV status to spouse/ partner or a friend was also a common stressor. For Coleman and Berry’s (1994) 51 HIV+ women (about half asymptomatic, 67% Anglo, 70% heterosexually infected), the highest-rated AIDS-related concerns were those about a loved one’s well-being, the welfare of their children (for mothers), thoughts and feelings about

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the meaning of life, financial difficulties, life goals, ability to control their lives, meeting other women with HIV, death and dying, and concerns related to medical treatment (all rated 3.0 on a 1-5 scale). Most were not yet highly concerned about specific physical limitations, difficulties in functioning, or becoming pregnant and having an HIV+ child. Andrews and Williams’s (1993) 50 HIV+ mothers (26% white, 56% black, 48% past drug users) expressed concerns about eventual placement of children, their awareness of AIDS diagnosis, and their illness or eventual death. The mothers also reported feeling a need to inhibit their emotional expression about their diagnosis, even at home because of their children’s presence, and noted difficulties in obtaining child care. In an exploratory interview study of 11 HIV+ women, 6 African American and 5 white, Rose (1993) documented the environmental, health, physiological, and psychosocial stressors they reported. These included limited or no income, living in an unsafe neighborhood, a pattern of poor health behaviors, lack of support systems, rejection by family and friends, suicidal thoughts, and concern over children’s responses. In this study, the main differences between the African-American and white women were that the former prioritized their children as their main purpose in life, and were less adherent to AZT therapy. In a study of 38 HIV+ African-American women, Belgrave, Foster, Goldberg, and Hernandez (1994) reported extensive use of planning, positive reinterpretation and growth, acceptance, turning to religion, and focus on venting of emotion as coping strategies. Instrumental social support was also identified as a helpful resource. Behavioral disengagement and alcohol and drugs were least often used. By far the majority of their social support came from family members; friends and colleagues were also a frequent resource. Arnold’s (1994) qualitative study of 7 HIV+ Caucasian women showed that philosophical or religious beliefs were spontaneously reported by nearly all as a resource that helped them cope. In this homogeneous convenience sample, nearly all reported involvement in AIDSrelated activities such as speaking out and educating others. It seems likely that HIV+ women’s coping patterns would be linked to the nature and severity of their stressors, but this connection has not always been made. Exceptions include the Greenwood, Szapocznik, et al. (1995) study of 100 HIV– and 50 HIV+ African-American postpartum women. Chronic stress levels in both groups were very high from poverty, unsafe neighborhoods, and relationship conflicts. Their HIV+ women appeared to use less adaptive coping methods, including substance use, distraction, and denial. Although concerns about their children were major stressors for Andrews and Williams’s (1993) HIV+ mothers, 44% also listed their children as major sources of social support, providing engagement in life, a reason to abstain from drugs, distraction from HIV-related anxieties, unconditional love, and self-esteem support. In the HER Study sample of HIV+ women, described in Chapter 8, stress from HIV-related symptoms and other life stresses were independently related to psychological functioning (CES-

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D scores) positively, and to adaptive daily functioning negatively. Positive coping was related to lower CES-D scores and better adaptive daily functioning. Disengagement was related to higher CES-D scores and worse adaptive functioning (Moore, Solomon, Schuman, et al., 1995). In Coleman and Berry’s (1994) sample, the most common coping strategies were threat minimization/positive attitude, community involvement/spiritual growth, and seeking social support. Fatalism, avoidance/self-blame, andinfomationseeking were much less common. Frequency of thoughts about HIV and avoidance/ self-blame were independently and negatively related to psychological adaptation for these women. Demi et al. (1994) evaluated the impact of stigma and social support on distress in 160 HIV+ women. Stigma was positively related to emotional distress, and social support negatively related. Exploring the “fighting spirit” coping style, Nannis, Semple, and Patterson (1995) found that HIV+ women who identified with this style scored high on social support and low on loneliness, anger, and depression. Only one study relating coping to distress in HIV+ women has been published to date. Commerford, Gular, Orr, Reznikoff, and O’Dowd’s (1994) sample (N = 29) was 55% Hispanic and 35% (non-Hispanic) white, and about half IDUs, with about half presumptively heterosexually infected by IDU male partners. Self-blaming denial, emotional expression, threat minimization, and wishfulfilling fantasy were related to greater anxiety and depression self-ratings. IDUs and non-IDUs did not differ in coping strategies, anxiety, or depression. However, it is unclear how far the findings from this distressed psychiatric clinic sample may generalize. In a study of 27 HIV+ women caring for their HIV+ children, O’Leary et al. (1991) found that women who blamed themselves for their children’s infection were more depressed, and those who were more depressed coped by activebehavioral strategies or by avoidance, especially avoidance of the child. Emotionally sustaining, problem-solving, environment-changing, and indirect social supports were all associated with lower depression. Comparing these women with uninfected foster caregivers, the mothers were more depressed and had less social support and less hardy commitment (O’Leary, Wadhwani, Gebelt, & Frenkel, 1995). The existing literature on HIV+ women is heterogeneous in so many ways as to resist integration. Studies differed in ethnic and SES composition, family status, predominant risk factors, and HIV disease stage of subjects, all of which may affect ambient stressors, available coping and support resources, and distress. Furthermore, many subject samples are small and not representative, being disproportionately Caucasian, educated, and non-IDU, or else sampled from psychiatric settings and disproportionately distressed. Reported stressors have likewise been heterogeneous, and have only recently been linked to specific means of coping, to social support, or any of these to distress, such as by O’Leary et al. (1991), Coleman

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(1994), Commerford et al. (1994), Demi et al. (1994), and Moore et al. (1994), but only one of these has been published as of this writing. The possibility of consistent cross-cultural differences among women in stressors, preferred coping, and especially social support patterns has rarely been systematically explored (but see Jenkins, 1995d; Jenkins & Galindo, 1995). At this early stage of research on HIV+ women, it seems important to extend our exploration both forward and back. We must look back to antecedents of stress, coping, and social support such as beliefs about health and illness, material and social resources, and community norms and stigmas that may shape women’s cognitive appraisals, self-blame, and coping. We must also look forward to the consequences for women’s health and health care use of their patterns of coping with and seeking support for HIV-related illness.

FUTURE RESEARCH AND TREATMENT PRIORITIES Research To be of use to women coping with HIV and their health care support systems, research efforts must proceed on several levels. First, research findings on gay men, primarily Anglo and middle class, must be tested for their applicability to ethnically diverse and poorer women. This need is especially urgent in the case of social psycho-physiological studies predicting immune functioning, disease progression, and survival (Hankins & Handley, 1992; Ickovics & Rodin, 1992). To date, there are no published studies on the relationships between stress, coping, or social support and immunity in HIV+ women. Physiological differences between the sexes are often overlooked, with the assumption that findings for men generalize to women. Alternatively, it is assumed that the sexes are so different that entirely new research designs and measures are needed for women’s “more complex” physiology. The extent to which time since diagnosis, disease severity and disability, past or current drug use, poverty, previous psychosocial/psychiatric problems, self-esteem, and patterns of coping or social support mediate adaptation and quality of life among women with HIV/AIDS is unknown (Coons, Spence, Walch, et al., 1995). Studies of HIV+ women might productively draw on existing literature on women’s coping with other diseases such as breast cancer (e.g., Carveret al., 1993; Meyerowitz, 1983; Stanton & Snider, 1993), especially investigations suggesting that a resisting, “fighting spirit” attitude may be helpful in extending survival (Cooper & Faragher, 1992; Greer, 1991; Temoshok, 1987). Ultimately, the question of gender and culture differences is an empirical one, and answering it is an urgent priority if we are to develop interventions that are maximally useful to women living with HIV. Second, for the cases (physiological or psychosocial) in which differences predominate, theoretical models that are useful for women and cross-culturally

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generalizable must be developed, elaborated, and tested (Amaro, 1995; Jordan et al., 1991; Wyatt, 1994). Models of both adaptive and problematic behaviors over the entire illness course will be needed. In some cases, new methods and technically sound measures may be necessary to test new models in ethnically diverse populations of women (Coons & Revenson, 1994; Coons, Walch, & Malloy, 1993; Jenkins, 1995d). For example, because existing instruments for the assessment of life stress may not represent the experiences of the women who are most at risk, suitable measures that do so are needed. The development of these should follow the trajectory used for the development of measures for men, that is, beginning with systematic qualitative studies to identify and describe the relevant conditions of stress and support in ethnically and socioeconomically diverse women’s lives that have been overlooked in studying Anglo men (see Stewart, 1993). Coleman’s, Semple and colleagues’, Watts-Jones’s, and Cervantes and colleagues’ lists of stressors serve as an excellent beginning; in each case these should be replicated on samples of women differing in ethnicity from the original study. Women’s cognitive appraisals of concern and control should be examined to capture the specific features of these conditions that are stressful for women (e.g., threats to relationships) that may be less influential concerns for men; and the degree and means of control noted by women, because women may have less control in general (as well as over specific stressors) than men do. Accurate appraisal of control and appropriate coping minimize distress (reviewed in Folkman, 1984; and Thoits, 1991). Basic research to identify the active ingredients of emotion-focused coping (e.g., Stanton et al., 1994; Temoshok, 1987) and social support may be more vital for understanding stress responses in women than men. Third, both theory and methods must consider women in their social context, and the ways in which their relationships, roles, gender norms, and structural situation (and interactions among these) may shape women’s behavior and outcomes differently from men’s (Stewart, 1993), particularly by influencing the distribution of power (Beeker, Guenther-Grey, Raj, & Leslie, 1995). Special care must be taken to evaluate differences among women related to ethnicity, SES, risk factors (including drug use, family violence, enduring mental illness, and sex work), life situation stability, and stability of partners and family members whose life crises may affect women’s abilities to care for their own health needs. Pervasive gender differences and differences among women in relationship resources and felt responsibilities are especially crucial, and usually have been undervalued by researchers. Relationships must be considered as both sources of stress and coping resources (Jordan et al., 1991); the study of reciprocity in relationships is still in its infancy, and its growth must be accelerated. More differentiated (and unconfounded) measures of social support are needed that capture the quality of relationships (including strain and obligation as well as support), and that separate role-determined supports from personal caring sup-

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ports, and these from empathic skills that may be defeated by commitments to role obligations. Fourth, basic descriptive and qualitative research is needed on ways that women cope with stressors, and the multiple consequences of these ways for their physical, mental, and social functioning. Emotional approach coping (Stanton et al., 1994) seems important for further study; likewise, empathy as a component of social support deserves further attention (Mumy & Jenkins, 1995). These studies should include demographic data adequate to identify subpopulations of women who may be differentially vulnerable or who may benefit from differing resources. We know little about the types of women who use the diagnosis of HIV/AIDS as an opportunity to make dramatic improvements in the overall quality of their lives. Predictors of resilience within and across the diverse groups of women coping with HIV/AIDS remain to be investigated (O’Leary & Ickovics, 1995). The role of coping and social support in reducing stress exposure and impact needs exploration (Pearlin, 1989). Fifth, confusion about social categories is a continuing problem that must be clarified. Future studies should avoid the danger of mistaking a demographic “marker variable” for an underlying mechanism by examining each of the several associated, plausibly causal, variables, rather than relying on untested assumptions. Thus, findings that appear to characterize “gay men” may actually fit a narrow ethnic group, or age or SES range, or risk behavior group, and may not generalize even to the broader population of gay men. For example, few studies examine and control for confounding of gender, sexual preference, ethnicity, SES, religion, family pattern, social network structure, and transmission risk, and the cases of multiple transmission risk may be dealt with too simplistically (White, 1991). Analyses of ethnicity in particular may often be oversimplified (Wyatt, 1991). For example, acculturation (Landrine & Klonoff, 1992; Landrine et al., 1994) and SES (Curtis & Patrick, 1993) are often overlooked. These measures should be incorporated into needs assessments for intervention program design, and also into program evaluations, to ensure that the benefits of interventions are reaching all clients. Treatment Treatment and service priorities for women include accommodations by health care providers to the needs of the majority of HIV+ women who are poor, underresourced, and overloaded by family obligations that may threaten or preempt their self-care. This includes provision of transportation (of clients to services or vice versa), child care, and children’s services. Psychological services in particular will be more effective if they are gender- and culturally specific, and available in languages other than English (Simoni, Mason, Marks, Ruiz, & Rich-

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ardson, 1995). Services are more accessible to this population if a collaborative approach is taken, one that provides the client with rapid, high-quality services and respect, information, and a trustworthy treatment alliance. Women who are used to neglect from health care providers may expect or assume friction and inadequate care, and may thus be prepared to be nonadherent to treatment regimens. Adequate social support from relatives or other women with HIV may help to reduce emotional distress and isolation, and foster a context for improved self-care. Community and hospital-based strategies aimed at increasing contact among women who are HIV+ should be supported. Furthermore, drug treatment programs for HIV+ women that also accommodate their children will hopefully result in improved outcomes. Individual and family-focused interventions are needed to minimize adverse sequelae associated with making arrangements for children and other relatives when women become too ill to care for dependents. Studies of adaptation among women who continue to abuse drugs, who are homeless and/or cope with enduring mental illness as well as HIV are needed to inform the development of effective interventions for these underserved populations. Considering the central roles of gender, ethnicity, and social context in women’s lives underscores the need for gender, culture, and context-specific interventions. Further knowledge of women’s processes of adaptation to HIV and AIDS will greatly improve our ability to design clinical interventions that enhance health care and quality of life in women and their families.

ACKNOWLEDGMENTS. We thank Dr. Brady Allen for access to reference materials, and Dr. David Celiberti for comments on a previous draft.

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Intervening with Adolescent Girls Living with HIV Mary Jane Rotheram-Borus, Debra A. Murphy, and Sutherland Miller The HIV pandemic has dramatically influenced the lives of adolescent girls who have become infected. Young women who are HIV seropositive (HIV+) have special needs for interventions to reduce the negative consequences of their infection for themselves, for their children, partners, and families, and for society. This chapter will review the challenges posed by HIV to these young women and will outline intervention programs designed to reduce long-term negative social, behavioral, and mental health consequences of HIV.

EPIDEMIOLOGY HIV infection among adolescents is a significant and growing problem. Over half of the 17 million HIV+ adults in the world are believed to have been infected during adolescence (Goldsmith, 1993); it is estimated that there are 20,000 HIV+ adolescents in New York City alone (Baker, 1994). More than 2300 youths aged 13 to 19 years have developed AIDS (Centers for Disease Control and Prevention [CDC], 1995a). Given the long incubation period between HIV infection and AIDS diagnosis (Goeddert et al., 1989), it is likely that those with AIDS aged 20 to 30 years (about 20% of AIDS cases) became infected during their adolescence. Fewer than 1% of adolescents are currently identified as HIV+: 0.11% of teenage military applicants, 0.3% of Job Corps entrants (CDC, 1995b), 0.4% of those attending MARY JANE ROTHERAM-BORUS and DEBRA A. MURPHY • Department of Psychiatry, Division of Social and Community Psychiatry, University of California, Los Angeles, CA 90024. SUTHERLAND MlLLER • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, NY 10032. Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 87

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clinics in urban hospitals (D’Angelo, Getson, Luban, Stallings, & Gayle, 1989), and 0.7% of adolescents giving birth in New York City (Novick et al., 1989). However, there are subgroups of youths at higher risk. For example, 2.2% of youths attending sexually transmitted disease (STD) clinics are HIV+ (Quinn et al., 1988). Among runaways, HIV seropositivity ranges from a low of 2.1% in Houston (Stricof, Novick, & Kennedy, 1990) to a high of 12% in San Francisco (Shalwitz, Goulart, Dunnigan, & Flannery, 1990), and 5.3% in New York City (Stricof, Kennedy, Nattell, Weisfuse, & Novick, 1991). Gay youths are likely to be at high risk as well, given that about one-third of male adolescents with AIDS have had same-gender sexual partners (CDC, 1995a). The epidemiological profile of adolescents with HIV is quite different from the adult infection pattern. Compared to adult females, a higher percentage of adolescents who are HIV+ and who have AIDS are females (Burke et al., 1990; D’Angelo et al., 1989; Quinn et al., 1988). As expected, seroprevalence rates rise with age (Hayman et al., 1990; Stricof et al., 1991); most persons who are HIV+ are identified after the age of 18 years. High seroprevalence rates among adolescents are concentrated geographically in AIDS epicenters (e.g., Los Angeles, San Francisco, and New York City). In these AIDS epicenters, African-American and Hispanic youths are at higher relative risk for HIV infection than Anglo Americans, given these minority youths are overrepresented among adolescent AIDS cases (CDC, 1995a). In summary, while the number of adolescent AIDS cases is low (CDC, 1995a), HIV seropositivity is a significant problem, especially among African-American and Hispanic adolescents living in poverty in America’s inner cities. There are four primary nonhemophiliac subgroups of youths who are HIV+: young women who are partners of injecting drug users; those who live in neighborhoods with high accessibility to crack/cocaine, methamphetamines, and/or poppers; injecting drug users; and gay and bisexual male adolescents. Increasing numbers of young women are becoming infected (CDC, 1995c). The risk profiles of these young women vary substantially from their infected male peers (RotheramBorus et al., 1996). The typical young woman who is HIV+ has only had a median of 8 sexual partners compared to a median of 57.5 partners among young HIV+ males. About 16% of the young women used condoms consistently compared to 3% of young HIV+ men. About 2 years after the young women had been identified as HIV+, about half of them were abstinent in any 3-month time frame and 40% were using condoms consistently. Compared to young HIV+ men, women used less alcohol and drugs. Over their lifetime, 24% of young men were injecting drug users, but only 5% of young women; 73% of men reported using hard drugs (e.g., methamphetamines), while only 45% of young women reported using these drugs. Over time, young HIV+ women were even less likely to use alcohol and drugs in the last 3 months (40 and 5%, respectively) compared to young HIV+ men (68 and

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44%). Two years after learning that they were HIV+, only 5% of young women injected drugs, while 13% of young HIV+ men continued to inject drugs. Typically, HIV+ young women are identified when they are screened for pregnancy or as they are giving birth. More than 60% of young HIV+ women had at least one pregnancy, 32% had been sexually abused, 54% never used condoms with their steady sexual partners, and 73% reported STDs (Hein, Dell, Futterman, Rotheram-Borus, & Shaffer, 1995). The women appear to have become infected because their partners were HIV+, often without the young woman knowing her partner’s status. Compared to HIV-negative female peers living in similar highrisk neighborhoods, HIV+ young women are more likely to engage in each type of sexual intercourse (vaginal, receptive and active oral sex, and receptive anal intercourse) (Hein et al., 1995). Gender is a key issue that must shape the design and delivery of an HIV prevention intervention. The challenges faced by young women are quite different from those of young men. Young gay men are the most frequent consumers in adolescent AIDS programs. The numbers of women are often so low that it is difficult for them to find a cadre for social support among the group; the women must rely on their relationships with staff, rather than being able to find persons their own age coping with the illness. Second, the issues are quite different. To have, or not have, children is a critical developmental decision that most young women consider seriously at some point in their life. Learning that one is seropositive for HIV elicits even greater focus on motherhood and generativity. Young gay men almost never have this issue to confront. Third, young women are often involved in relationships of unbalanced power: with their families, their romantic partners, and in work settings. Negotiating these power relationships and implementing new skills (e.g., eating healthy, using condoms, disclosing serostatus) is more complex when one holds less power within a setting. Finally, young women have often been socialized to focus on others, rather than on their own needs, goals, and plans. Often, it is only after children are grown and leave home that women become refocused on themselves (Archer, 1990). Young women who may die before their children are adults are being asked to refocus at a very young age on themselves, the meaning they want for their life, and the actions and plans that will meet their personal goals. Fourth, since many young women are identified as HIV+ during their pregnancy or when they give birth, they often need to learn about T cells, prophylaxis, and new treatment at a time when they primarily are focused on whether their baby is healthy and when their expectancies are geared toward birth and motherhood. These concerns lead to very different intervention programs for young women who are living with HIV. While some young women are injecting drug users (IDUs), most persons acquiring HIV through injecting drug use are men (72%; CDC, 1995a). Among IDUs, transmission is likely to occur in two ways: (1) sharing needles or syringes

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(“works”) in intravenous drug use and (2) disinhibition (while using drugs) of sexual risk behavior that can lead to HIV infection, such as not using condoms during sexual intercourse (Fullilove, Fullilove, Bowser, & Gross, 1990; Hingson, Strunin, Berlin, & Heeren, 1990), exchanging sex for drugs or money (Goldsmith, 1988; Fullilove et al., 1990), and sexual activity with multiple partners. Schilling et al. (1991) note that although IDUs are engaging in safer needle practices, there is less evidence that they are changing their sexual behavior. Thus, sexual transmission appears to be a frequent route of infection among male IDUs and their female sexual partners. The number of adolescent IDUs is relatively low. In particular, needle exchange programs have significantly reduced the number of new infections among this subpopulation (Watters & Guydish, 1994). However, when injecting drugs, youths often have unhealthy eating and sleep patterns, engage in illegal activities for economic survival, and are at risk for self-inflicted violence (Fullilove & Fullilove, 1994). Therefore, the daily routines of IDUs are problematic, and exacerbate the overall stress of HIV-infected adolescents. The largest group of HIV+ youths are young men who have sex with men. We review the characteristics of these youths as a contrast to the issues experienced by young women, who are often concerned with decisions regarding romantic relationships and children. Most homosexuals do not “come-out” until early adulthood; adolescents who identify as gay or bisexual and disclose this to others are younger when coping with the challenges of coming-out and have fewer personal resources to cope with the social stigma that often accompanies this disclosure (Rotheram-Borus & Fernandez, 1995). In addition, these youths are likely to initiate sexual activity at an earlier age (12.5 years; Rotheram-Borus et al., 1994), compared to youths in national samples of adolescents (Sonnenstein, Pleck, & Ku, 1989). Illicit drug use was 83%, with 58% of youths meeting Diagnostic and Statistical Manual of Mental Disorders—III criteria for substance abuse (Remafedi, 1987). An anonymous seroprevalence survey of young gay and bisexual men in San Francisco indicates that 9.4% of young gay men are already infected with HIV (Lemp et al., 1994). There are few lesbian women who are HIV+; however, Rosario, Hunter, and Gwadz (1995) report that almost 75% of young bisexual and lesbian women who engage in cross-gender intercourse choose gay men as their sexual partners. Many young gay men have multiple partners (M = 324.4, median = 57.5) and often are involved in sexual activities in high-risk settings (e.g., bartering sex, 27%; sex with older adult male partners, 89%) (Rotheram-Borus et al., 1994). Substantial substance use characterizes subgroups of gay male adolescents. Rotheram-Borus et al. (1994) found nearly a third of minority gay/bisexual males to report alcohol or drug use on a weekly basis, similar to white, middle-class gay youths (Remafedi, 1987). In addition, substance abuse, particularly injecting drug use, is also associated with bisexual acts. Women infected in the context of substantial substance use may be lesbian.

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Gay males have additional challenges. They must stop substance use and sexual behaviors that are associated with disease transmission. However, they must also cope with society’s negative beliefs and attitudes regarding homosexuality (Rotheram-Borus & Fernandez, 1995). When disclosing their sexual orientation, gay youths are often ejected from their families, rejected by peers, and marginalized into social niches that place them at increased risk (Rotheram-Borus, Hunter, & Rosario, 1995). Therefore, complex coping strategies are required to identify when, to whom, how, and why to disclose sexual orientation, in addition to decisions regarding disclosing HIV serostatus.

IDENTIFICATION OF HIV+ YOUTHS While the estimates of the number of HIV+ youths are high, these youths typically do not know that they are infected, nor are they linked to care. A survey of AIDS programs in adolescent medicine clinics resulted in about 1200 adolescents being identified as HIV+ and linked, at least one point in time, to medical care (Futterman, Rogers, D’Angelo, & Levin, 1995). Therefore, most infected youths are unaware of their serostatus. Researchers have increasingly endorsed HIV testing for adolescents, particularly those engaging in high-risk acts (Hein, 1993). Data have demonstrated the positive value of prophylactic treatments (e.g., Lundgren et al., 1994), particularly for pregnant youths who are HIV+ (CDC, 1994). The average length of time from infection to knowledge of serostatus appears to be about 7 to 8 years (Wortley, 1995), suggesting that there is a strong need for earlier testing in order to initiate early prophylactic treatments. Researchers and some health care professionals share this perspective (Frerichs, 1995). However, it is not clear that most practitioners and AIDS-prevention advocates are enthusiastic about testing. There are substantial variations in the rate of HIV testing among adolescents considered at high risk for HIV. For example, Rotheram-Borus, Gillis, Reid, Fernandez, and Gwadz (in press) have found that 39.4% of youths in New York City agencies serving high-risk youths have been tested; in contrast, 89.2% of youths in Los Angeles and 65.7% of youths in San Francisco have been tested. Many local programs discourage testing (RotheramBorus, Murphy, & Parra, in press). Among adults, HIV testing appears to reduce HIV-risk acts and to increase prophylactic treatments (Higgins et al., 1991). There are few data on adolescents who have been tested for HIV; the available evidence on adolescent behavioral change in response to testing is either lacking (Baker, Huscroft, Morris, Re, & Firpo, 1992) or inconclusive (Futterman et al., 1990). For example, among highrisk youths who have been tested, most have been tested multiple times and continue to engage in HIV-related risk acts (Rotheram-Borus et al., 1996). HIV testing has been advocated in order to provide therapeutic interventions; however,

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such an argument is valid only when the adolescents can reasonably expect access to health care, experimental drugs, or vaccines that provide the rationale for early testing (Bayer, Levine, & Wolfe, 1986; Levine & Bayer, 1989). Substantial resources have been invested in the last 5 years to develop such programs. Since the initial authorization and funding of the Ryan White Comprehensive AIDS Resources Emergency Act (1990), a total of more than $2 billion has been awarded to cities, states, and direct service providers to develop outpatient health care and support services for people with HIV, including adolescents (G. S. Bowen, personal communication, November 1, 1995). Therefore, the argument opposing testing because of the lack of resources is less persuasive. In addition, some evidence supports the claim that HIV testing can reduce HIV-risk acts. Thorough pre- and posttest counseling may help reduce the anxiety for those who test HIV seronegative. Those who test HIV+ do not experience an increase in psychiatric symptomatology from testing (Perry, Fishman, Jacobsberg, Young, & Frances, 1991), but they are signaled that there is a need for early intervention and halting of risk acts. However, most studies of HIV testing centers and the self-reports of those tested for HIV would suggest that pre- and posttest counseling for HIV testing is brief, frequently omitted or not recalled, or is poorly done (Frerichs, 1995). Thus, it is premature to conclude that a well-designed HIV testing program with sufficient individually based counseling and follow-up would not be an effective adjunct to behavioral change to safer-sex and drug-use practices. Even if early identification of adolescents who are seropositive for HIV becomes commonplace, increased HIV testing will not likely be an effective prevention strategy to induce behavioral change in adolescents. Some studies of the impact of HIV testing among adults indicate that many do not change their behavior after being informed of their serostatus (Fox, Odaka, Brookmeyer, & Polk, 1987; Ostrow et al., 1989). The limited data available indicate that adolescents are likely to continue risk acts after learning their serostatus. Futterman et al. (1990; N = 15) found that HIV+ females did not increase condom use and continued to contract STDs after knowing their test results; among HIV+ male youths, 33% continued high-risk acts, and only 33% increased condom use. Continued crack or cocaine use was associated with ongoing high-risk sexual practices following HIV testing (Futterman, 1991). In a study of high-risk youths of unknown HIV serostatus, Koopman, Rotheram-Borus, Dobbs, Gwadz, and Brown (1992) found that only 48% of runaways and 68% of gay males anticipated disclosing a positive serostatus to their sexual partners. In addition to risk of spreading HIV infection to others, learning one’s serostatus may be associated with negative outcomes. Among 24 youths testing HIV+, suicidal ideation was common but no suicide attempts occurred (Futterman, 1991). However, 21% of New York City high school students spontaneously reported that they would commit suicide if they were HIV+ (Goodman & Cohall, 1989). Koopman et al. (1992)

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also found that many youths claimed that if they were HIV+, they would attempt suicide and/or would have sex with as many as possible in order to infect them. Rotheram-Borus et al. (1996) found that HIV+ adolescents who are linked to medical care have substantially reduced their sexual and substance-use risk acts in response to testing. A significant subset, however, maintain frequent high-risk behaviors. In this study of 151 HIV+ youths who had been linked to medical care for about 2 years, we found that the lifetime rates of high-risk sexual and substance-use patterns had shifted substantially. However, in the last 3 months, more than half of the youths had multiple sexual partners (M = 4.5-4.0), while 77% used condoms. In addition, less than half of the youths (44-46%)always used condoms. Alcohol (63%), marijuana (41%), hard drugs (36%), and injecting drugs (12%) were used by a substantial subset. Over 3 months, the rates of sexual acts and substance use remained almost identical. After initial reductions in HIV-related risk acts, these behaviors became highly stable. For example, in this sample, the correlations of the number of sexual partners over 3 months was 0.34, and 0.69 for the level of illicit substances. While many of the youths had changed their behaviors, a substantial number of risk acts remained. While HIV testing is an important public health strategy for early identification of infection, testing may also be an important prevention strategy. Many adolescent girls want to become pregnant (Lindemann & Scott, 1981; Matsuhashi, Felice, Shragg, & Hollingsworth, 1989). Emphasizing the importance of condom use is not an effective prevention strategy when a girl wants to become pregnant. Therefore, HIV testing is likely to be a component of prevention strategies of adolescents who want to parent. Europeans (e.g., see Kutchinsky, 1988) have anticipated that lifetime condom use is unlikely to be successful. Therefore, prevention researchers have advocated condom use until partners decide to become monogamous. At that point, the couple are tested for HIV, continue to use condoms and to be monogamous for the next 6 months, and then are retested for HIV. The partners agree that if either is to have sexual intercourse with another partner, condoms will be used. For those intending to become pregnant, a similar strategy is advocated. Endorsing such strategies is highly risky for adolescents, however. It is debatable whether adolescent pregnancy should ever be encouraged, given the negative consequences of early parenthood (Allen-Meares, 1991; Dryfoos, 1990; Fraser, Brockert, & Ward, 1995). Furthermore, monogamy for more than 1 year is atypical of many adolescents, and thus, it is likely to be unrealistic that adolescents will follow this strategy. Therefore, it is with many precautions that any prevention message encourage HIV testing as one component of an HIVprevention strategy. It should be noted, however, that HIV testing among adolescents is likely to become even more routine, particularly among young women who are pregnant or want to become pregnant. The recent announcements on the utility of AZT to reduce vertical transmission from mothers to children (25%

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without AZT versus 8% with AZT CDC, 1994) will dramatically increase the pressure for HIV testing for parents and potential parents. This pressure will be focused on young women, not their male partners. If testing is to be more widespread, there is a critical need to design developmentally appropriate standards for HIV testing of adolescents, Although there have been several attempts to design guidelines for adolescent testing (English, 1989; Blumenthal et al., 1990), no consensus has been reached. Many communitybased agencies have been hesitant to test for HIV because of concern that if HIV+ youths were identified, there would be no services for them. In contrast, service providers attempting to serve HIV+ youths feel that community sites are overprotecting adolescents by not perceiving them as capable of making their own decisions regarding testing. These are debates that have continued over the last 5 years with no consensus of opinion on their resolution. Resolution of these debates is central, however, especially for girls who want to become pregnant.

ADAPTATION TO LIVING WITH HIV There are three critical challenges involving young persons who are living with HIV: (1) the institution and maintenance of healthy life-styles and adherence to recommended medical regimens, (2) stopping the spread of HIV by youths who are infected, and (3) increasing HIV+ youths’ focus on their quality of life and future plans. These goals parallel an identical set of priorities that face society. Helping young HIV+ women adapt to their serostatus is a high priority for public health professionals in order: (1) to reduce long-term costs for medical care, (2) to reduce the number of new infections that could occur from transmission of the virus, and (3) to maintain and/or increase the woman’s social contribution. While these are important goals that emerge immediately when learning of one’s serostatus, for many young people, learning that one is HIV+ does not have an immediate or significant impact. In particular, young women who learn that they are HIV+ are usually hearing the diagnosis within the context of pregnancy. Low-income women are often coping with unsupportive partners, poverty, caring for existing children, and supporting their extended family; HIV is just another stressor on an already long list. The HIV diagnosis is unlikely to influence the women’s daily routine for several years; therefore, initially, few adjustments are made to the diagnosis. Rotheram-Borus, Kennedy, and Murphy (1996) have suggested a model describing how youths adapt to their serostatus. First, immediately following the initial diagnosis as HIV+, there is a brief (less than 1 week) period of emotional distress where the adolescent recognizes that seropositivity suggests a premature death. Second, the salience of the seropositivity recedes and daily life is resumed. The adolescent’s serostatus has little impact on daily life. Third, a trigger event

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occurs that precipitates a sudden, significant, negative reaction by the adolescent. This trigger event typically involves a friend dying or the onset of an HIV-related illness that signals the adolescent’s declining health. However, triggers can range from significant life events to more daily, typically noneventful things. For example, a television commercial about HIV seropositivity may be a personal trigger for an adolescent. The trigger leads the adolescent to begin to recognize the daily impact of HIV on his or her life. While suicidality and severe emotional distress have not seemed to characterize the immediate response to learning one’s diagnosis, strong negative emotional responses do appear to characterize this stage of adaptation (e.g., anger, depression, helplessness). Mental health counseling and interventions to stop substance use are critical at this stage and may be more likely, at this time, to have a positive impact on the adolescent. Among HIV– youths, self-preservation is the motivation to avoid HIV infection; among HIV+ youths, self-preservation motivates adoption of a healthy life-style and adherence to health care regimes. At this point in the process of adaptation, it is most likely that the adolescent will be willing to change her or his behavior, motivated by selfpreservation. The period of adaptation to serostatus, while the youth is seriously distressed, varies substantially. For some youths, this period appears to be short, while others may never stop a cycle of profound distress over their diagnosis (M. Kennedy & R. Reynolds, personal communication, October 15,1995). It is not until youths have reached this stage that the models of adaptation to loss and/or death become appropriate (e.g., Kuebler-Ross, 1969). Interventions regarding adaptation at this point help youths move to stages of integrating their serostatus into positive daily routines and begin to establish a quality of life. Thus, stage four involves recognition and adaptation to the disease. Planning for realistic future goals is the next stage of adaptation. Finally, when youths are ill, becoming sick on a cyclical basis, and recognizing that their life span may be as short as a few years, specific planning around death and coping with end-stage disease becomes important. The challenges at this stage are as much to the service provider as they are to the youth, and the goal becomes to assist the youth in identifying and implementing his or her plans and desires. This stagelike process has not been empirically demonstrated. It emerges from a review of case studies gathered in conducting an ethnographic study of youths living with HIV and through intensive interviews with service providers who have been designing and implementing services for HIV+ youths over the last 6 years. Specifically, Welle, Luna, Rotheram-Borus, and Murphy (1996), after examining the histories of adolescent HIV+ females, identified four distinct phases through which they came to terms with an HIV diagnosis. These four stages were: (1) reflecting on previous, non-HIV-related losses, (2) reflecting on HIVrelated losses, (3) clarifying beliefs regarding life and death, and (4) focusing on

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living with HIV. This pattern is similar to other stage models of illness and loss that have been proposed (e.g., Drotar, 1981; Hobbs, 1984; Orr & Adams, 1987). Recognition of the salience of HIV in the life of HIV+ youths is critical when attempting to have a positive impact on the behavior of adolescents and must shape the design of intervention programs. Based on this model, collaboratively developed with service providers in three major cities (Los Angeles, San Francisco, and New York City), an intervention program was designed and implemented to assist adolescents in coping with their illness. The general need for secondary prevention will be discussed next, followed by the secondary prevention model that we have developed. Secondary prevention programs are particularly critical for adolescents whose lives are characterized by substance use and sexual experimentation, and who are likely to have been sexually active and/or substance abusing for many years before becoming symptomatic (Hein, 1987). If adolescents fail to care for their health, medical costs will rise exponentially. High infection rates among adolescents have long-term costs to society as the length of survival after HIV infection lengthens, the number of persons infected by each youth increases, and the percentage of infected persons in their cohort rises with age (Morris, Baker, Huscroft, Evans, & Zeljkovic, 1991). In addition to the long-term personal and social costs of not intervening to change behavior, new and different behaviors need to be implemented by HIV+ youths: (1) disclosure to present and past sexual and needle-sharing partners, (2) coping with the discrimination and stigmatization attached to HIV, and (3) daily adherence to complex health care regimes. Prevention programs for HIV+ youths need to address the particular problems, motivations, and behaviors required of such youths. In designing any intervention for HIV+ youths, it must be recognized that relapse prevention will be necessary to maintain safe behaviors. It is critical to anticipate relapse and design programs to prevent it (Becker & Joseph, 1988; Ekstrand, Stall, Coates, & McKusick, 1989). To prevent HIV+ youth from infecting others requires long-term maintenance of behavior change. There is evidence among adult gay men (Roffman, 1991; Kelly et al., 1990; Ostrow et al., 1989; Stall, Coates, & Hoff, 1988) that relapse of high-risk sexual behavior is common. Rabkin and Remien (1991) have observed that once-a-month booster sessions can facilitate prevention of relapse of risk acts. Among gay men, relapse has been found to be especially likely among younger males (Kelly et al., 1990), suggesting that it may be an even greater problem among adolescents.

INTERVENTION CONTEXT AND COMPONENTS Small-group interventions framed in a cognitive-behavioral model have been demonstrated to be effective with a variety of adolescent populations (see

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Kirby, 1995, for a review). Typically, each session contained approximately six exercises that were constructed as meaningful personal experiences that led to increased skills or that developed attitudes and knowledge needed to support the acquisition of new behaviors. There are many advantages to this delivery format: youths provide social support, positive models, and motivation for each other; youths shape each other through concrete social rewards providing multiple sources of reinforcement for behavioral change: a group provides multiple informants to evaluate the probability of success of problem-solving alternatives; the intervention is usually cost-effective in terms of staff time and resources; leaders become facilitators of group process and change, rather than directly linked to a single youth’s success. The intervention program designed and currently being evaluated adopted this small-group implementation model. However, in replicating interventions for HIV+ youths, it is important to reconsider the group model. The number of HIV+ youths currently linked to care is low. Therefore, only large clinics with substantial numbers of HIV+ youths can organize and deliver interventions in small groups. As outlined earlier, the issues of young men are substantially different from those of young women living with HIV. Therefore, it is desirable to have same-gender intervention groups. It is even more difficult to recruit sufficient numbers of same-gender youths living with HIV to form a group. In addition, many youths fear disclosure of serostatus to peers and may refuse to join a group. As youths become more symptomatic, group members will die; only experienced group facilitators can anticipate this event and help youths integrate, share, and utilize group support to overcome this stressor. Therefore, unless highly skilled leaders can implement the model, we caution group leaders to carefully consider the format for the delivery. We encourage modification of our currently manualized intervention so that it can be delivered to one person at a time (Miller & Rotheram-Borus, 1994, 1995a,b). The intervention for HIV+ youths developed at the Health Risk Reduction Projects at UCLA is an intensive intervention that consists of three modules, each containing 8 to 12 two-hour sessions (Miller & Rotheram-Borus, 1994,1995a,b). Rotheram-Borus, Koopman, Haignere, and Davies (1991) have demonstrated that the greater the intensity of the intervention, the better the results. Building on the motivation of self-preservation, the first module emphasized staying healthy and focused on motivation for behavioral change, barriers to staying healthy, and health care skills (Miller & Rotheram-Borus, 1994). The second module’s goals were to reduce substance abuse and to increase safer-sex behaviors, thus reducing the probability of transmission (Miller & Rotheram-Borus, 1995a). Finally, improving the quality of life through self-mastery strategies was addressed in the third module (Miller & Rotheram-Borus, 1995b). Four factors guided the development of training tasks found in the intervention: meaning, knowledge, attitudes, and skills. “Meaning” referred to creating workshop experiences that connected to central themes in the individual adoles-

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cent’s life and to assuring that the learning activity used examples that were relevant and important to participants, reflecting formative events, fears, hopes, and dreams to help the youth cope with learning that they are HIV+. We identified the central themes for HIV+ adolescents by conducting focus groups with HIV+ youths, pilot groups, and conducting an ethnographic study with youths in New York City, Los Angeles, and San Francisco. Only when the activity has meaning can the participant acquire motivation to learn a new skill. Meaning was of considerable significance for this intervention with HIV+ youth because of the questionable motivation to explore the impact of HIV on their lives, to take care of themselves, and to consider both their own needs and those of other’s simultaneously. “Knowledge” was related to the acquisition of specific skills needed to take care of one’s health, cut down on substance use, practice safer sex, and improve the quality of life. This section answered the question, “What do participants need to know in order to perform the task successfully?” For example, knowing that many contraceptive methods are ineffective for preventing HIV infection is essential for making decisions on the methods to use for protecting against STDs and HIV. Knowing about disease progression of HIV is necessary for youths to take responsibility in interacting with their medical providers. “Attitudes” were facilitated or changed in the service of the skill under consideration. Attitudes provide the basis for intending to perform the new behavior. Positive attitudes help youths reach performance goals; negative attitudes have the opposite impact. Attributions, responsiveness to peer norms, recognizing one’s likes and dislikes in partners and daily routines, and recognizing situations of high personal vulnerability are examples of attitudes. Furthermore, attitudes are involved with one’s self-perceptions: self-concepts, ideal selves, possible selves, and self-efficacy. When attitudes are identified, adolescents can then answer whether they are acting in ways consistent with self-perceptions. Also, attitudes must be identified for reframing to take place, which is often necessary to assist the youth in moving on, obtaining knowledge, or implementing a skill. The intervention is based on the assumption that underlying a youth’s successful management of health care, control of substance abuse, decision making about sexual situations, and creation of a high quality of life are a series of critical “skills.” A skill is the ability to perform an action at a reasonable level of competency. The skills are reflected not only in the actions that participants take when confronted with situational demands, but also are elicited when youths have taken charge of their lives and are seeking personal goals. Skills are categorized as intellectual (solving a problem), emotional (managing anger), social (solving a family conflict), and physical (putting on a condom correctly). The manuals were written to help facilitators achieve the objectives for each session. Each session of the manuals contained: (1) a statement of what was to be accomplished; (2) the rationale; (3) a summary of the exercises; (4) materials needed; (5) the time allowed for each exercise; and (6) a word-for-word presenta-

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tion of what the facilitators were to include in each exercise of each session. The manuals presented options and examples for facilitators; they did not provide the exact words. Facilitators were encouraged to use their own words once they became familiar with the manual and had been trained to maintain the sessions’ structure. Moreover, facilitators were trained to elicit words and examples from group members and use these within the exercise formats in the manuals.

CONTENT OF THE INTERVENTION Module 1: Staying Healthy (Miller & Rotheram-Borus, 1994). To stay healthy, adolescents must develop healthy daily routines (e.g., eating and sleeping), adhere to medication regimens, keep health appointments, and participate in medical care decisions. There is concern that HIV+ youth might not be motivated to learn the required skills. Therefore, at least 3 of the 12 sessions in Module 1 overtly deal with increasing motivation. To increase motivation to take care of themselves, youths confront negative attitudes toward being HIV+, identify personal goals to live a happy life, list what is important to them, and specifically devise strategies for feeling hopeful. The advantages and disadvantages of performing health maintenance actions are explored. To facilitate coordination of the youths’ thoughts, feelings, and actions, exercises focus on monitoring linkages between self-image, feelings, and taking care of themselves. Also, group cohesion is built through the distribution of “tokens” of appreciation on a regular basis during the group and between groups. Lotteries are used at the beginning of each day as an external reinforcer for attendance (e.g., everyone on time receives a chance to win two movie tickets). Goal setting is an important feature in each intervention module, but has particular relevance to the first one. Goal setting occurs in several ways. First, youths learn the elementary steps in the process of settinga goal: determining what is wanted, identifying alternatives, making a decision, determining what skills and resources are needed, and designing an implementation plan. Youths not only work on their own goals, but also role-play assisting other youths in obtaining what they want in terms of work, living arrangements, education, and social areas. At the end of each session, youths agree on a between-session task to accomplish. For example, a between-session task might be to identify two personal reasons for taking care of themselves. At the beginning of the next group session, youths share goal achievement and brainstorm overcoming barriers to completion of the task. In summary, youths in Module 1 identify their health-care-related goals by . Now I want answering: “Before becoming HIV+ I wanted ,, . In the future I want The second major theme in the first module is barriers to staying healthy. Concern over disclosing one’s HIV status, dealing with stigma, inadequate coping skills for reducing substance use, and failure to practice safer-sex behaviors are

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typically perceived as major barriers to a healthy lifestyle. Even though substance abuse and safer-sex practices are addressed much more fully in the second module, it is considered important to begin teaching skills for coping with them in the first module. Therefore, there are a few sessions on self-regulation related to substance use, and the self-regulation skills of monitoring, evaluating, and goal setting are taught. There is also practice in needle cleaning. The initial approach in Module 1 to safer sex applied the same monitoring process used in exploring substanceabuse patterns. Youths identify their “blueprint” —how they usually deal with sex, the typical triggers, and responses. Storytelling techniques are applied to changing behavior. The exercises on safer sex also include linking unsafe sex to drug and alcohol use and comparing the youths’ descriptions of themselves to those of youths who routinely employ condoms. Three very different skills need to be addressed for HIV+ youths: disclosure to sexual partner, adherence to health care regimes, and coping with stigmatization and discrimination. Disclosure of serostatus to present and past partners is a critical public-health strategy to stop the spread of infection. Socially competent scripts for disclosing this information and specific ways to avoid or to control potentially violent encounters must be developed by intervention researchers. We anticipate that HIV+ youths who disclose their serostatus will experience discrimination. Data on stressful life events in our ongoing prevention study indicate that 27% of gay male youths have been physically assaulted. It is likely that an even higher percentage face prejudice and discrimination (Rotheram-Borus, Rosario, & Koopman,1991). To cope with the other barriers, youths practice applying a problem-solving approach to decisions about disclosure and how to tell someone after they make a decision to reveal their status. They also role-play and use problem-solving techniques for situations in which they experience stigma—particularly in medical settings. The typical approach for skill development is to make the tasks meaningful, provide guidelines on how to perform the desired behaviors, model the behavior, practice the skill in a safe environment, and receive feedback. Module 2: Making Sexual Decisions and Reducing Substance Abuse (Miller & Rotheram-Borus, 1995a). The second module has two distinct components, one related to reducing substance use and the other to safer sex. There are five sessions devoted to safer sex, with the desired outcomes being: reduced transmission, reduced reinfection or infection with other STDs, and reduced pregnancies. These sessions are framed in terms of decisions because HIV+ youths face a number of ethical dilemmas (e.g., attitudes regarding use of condoms, being altruistic). It is assumed that each youth has some latent sense of what is ethical behavior that can be activated through presenting relevant scenes and discussion. Also, comparing decision alternatives to what one’s “possible self” would do is employed as a way to assist the youths in clarifying their values. Examples of ethical dilemmas include: wanting a baby but risking having an

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HIV+ baby; being close to an HIV+ lover through unprotected sex, but taking the chance of reinfecting or transmitting an STD to him or her; risking communicating that there is a lack of trust by asking for condom use; avoiding community service that might reveal one is HIV+; telling a partner that you are HIV+ when it might cause breaking up; and refusing unprotected sex with a partner who has been very loving and giving but insists on unprotected sex. Sexual transmission dilemmas are introduced through a “soap opera” scene that is acted out by two participants and then discussed by the group. No effort is made to impose a “right” way to behave. An example of a scene follows: Someone to Love LUCIA: I’m so miserable! INEZ:

That’s nothing new. What is it now?

LUCIA: No one cares what happens to me. INEZ:

I do. But don’t go feeling sorry for yourself.

LUCIA: You would feel awful if you were me. You are my only friend. I have no boyfriend. My family’s split up. I haven’t seen my father for years. My mother has so many problems that she can’t be bothered with me. INEZ:

I know it feels bad, but maybe there are some things you can do to fix it.

LUCIA: I’m going to do something. I’m going to get pregnant. I’d love to have a baby. It would feel so good. I’d love it, and it would love me. INEZ:

Aren’t you forgetting that you have the virus?

LUCIA:

I just know in my heart that I wouldn’t pass it on.

INEZ:

You can’t be sure.

LUCIA: That’s a chance I’m willing to take. INEZ:

For you or for the baby?

LUCIA: For both of us. The baby needs me. What are you going to say to me when the baby comes out all right? INEZ:

You really need to think this out carefully.

LUCIA:

I have. Don’t I have a right to be happy?

In addition to exploring ethical dilemmas, youths practice a variety of behaviors supportive of safer sex and useful in resolving the conflicts they face. They identify the effects of STDs on HIV vulnerability and determine which sex acts are the most dangerous. Youths brainstorm making condom use more erotic, practice putting on condoms correctly using a wooden model, and make choices

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among different protective methods, while learning that many popular and effective birth control devices do not protect against disease. Through role-playing, the participants practice telling a partner about being HIV+, asking a partner to use protection, influencing a partner to engage in safer sex, refusing a partner, and coping with any abuse that may occur as a result of the refusal. In each session on sexual safety, youths answer a questionnaire on what their behaviors are at that time. An example is, “Now I tell my sexual partners that I am HIV+.” The statements are labeled with “yes” or “no” by the participants to indicate whether they apply to their current behavior, and are a part of a self-monitoring strategy. The second series of sessions in Module 2 are aimed at reducing substance use or maintaining already low use. These six sessions are designed to initiate skills training adequate for light or moderate substance users, but they are not sufficient treatment for heavy or addicted users. For those youths who need it, a hoped-for outcome is a referral to a substance abuse program. The substance abuse model used here follows the pattern. The treatment objectives are to interrupt this cycle by having the person avoid triggers and prevent thoughts from progressing. Self-monitoring, evaluation, and goal setting are central to this process. A second main theme is resolving some of the real-life problems that substance users display in areas such as adequate housing, employment and work issues, educational effort, and marriage and family relations. Thus, in each session, one typical problem introduced by the group members is selected for problem solving. To reduce chaos and provide a model of focused activities, each session follows a standard format with self-monitoring exercises followed by skill development in one area that interrupts the pattern, and problem-solving of a real-life situation. The sessions follow a cognitivebehavioral group treatment approach. The skill-building activities that are sandwiched between self-monitoring, fixing everyday living issues, and goal-setting are: thought stopping; identifying and avoiding external triggers; and reframing and countering negative thoughts and beliefs, as well as other coping strategies for dealing with emotions and internal triggers. Also, there are exercises designed to increase frustration tolerance, as frustration is very problematic for adolescent substance users. Relaxation and assertive communication are employed here. The module ends by blending sex and substance use together. Youths identify situations in which substance use can lead to unsafe sex. Problem-solving strategies are applied to these scenes, and youths role-play a “scared self” and a “smart self” who are addressing the separation of drugs, alcohol, and sex. Module 3: Being Together (Miller & Rotheram-Borus, 1995b). The third module consists of eight sessions aimed at improving the quality of life of the HIV+ youth. Few youths have the luxury of focusing on quality of life, particular HIV+ youths who have had to fight for survival for several years living on the

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streets. Developing resiliency or hardiness might be terms that best communicate the primary goal of Module 3. As their lives move toward illness and death, HIV+ youths can increase their quality of life by: (1) discovering core values, preferences, and attitudes (i.e., identifying a socially constructed sense of self that is inconsistent with behaviors, beliefs, and values), (2) reducing pain, loss, and discontent in response to learning their serostatus, (3) increasing a sense of personal control, (4) reducing self-destructive motivations, and (5) feeling joy on a routine basis. We presume that pain, loss, discouragement, and discontent are a frequent aspect of daily emotional life for most people and are far more prevalent conditions than joy and serenity. However, it is also believed that there are cognitive, affective, and behavioral skills that can reduce misery—partially by enabling the individual to see life differently and, consequently, participate in daily living more deeply. In these eight sessions youths learn how to concentrate on the quality of each moment, emphasizing drug-free routines. To develop an awareness of every drugfree moment, meditation skills are taught in order to increase concentration and awareness and to provide a vehicle for recognizing personal self-destructive behavior patterns. Metaphors and stories are employed to change perceptions or to encourage youths to reflect on different ways of framing issues. Most sessions contain a humorous dialogue between an aggressive TV reporter and the Wise Person, illustrating an important theme for that session. There is also a strong focus on personal responsibility and ethics. Youths are encouraged to develop and share guidelines for living their lives and relate them to very practical issues. For example, what jobs would be acceptable from their ethical perspective? Then their standards are applied to ethical dilemmas—choices between two positive or two negative sets of actions. As other people are a key element in most individuals’ experience, youths deal with increasing altruism and applying the same framework regarding personal responsibility to looking at social relationships. That perspective entails recognizing that we typically desire others to be as we want them to be, not valuing the other person for who they are. Difficulties in relationships are mirrors. For example, “I am mad at you” may mean “You are not giving me what I want and must have.” Youths practice being highly aware of each other and identify when they show deep caring for others and in receiving social reinforcement for their actions. The title of these eight sessions, “Being Together,” thus means both being an independent person and being part of a healthy, caring community.

SUMMARY As do all adolescents, youths living with HIV face complex challenges daily. Being seropositive may be just one more stressor on an already overloaded system that the organism does not address; however, learning that one is HIV+ or

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subsequent triggers that focus the youth on his or her serostatus may allow what mental health professionals would term a “window of opportunity” in which treatment may be efficacious. It is at these times that the youths have the possibility of focusing on and recognizing the possibilities of each moment in life. The type of intervention presented here focuses on the personal and social goals of adolescents regarding three major topics: staying healthy, which includes developing healthy daily routines and relationships with medical providers; staying safe, which includes personal responsibility for stopping substance abuse and unprotected sexual acts; and quality of life, which includes focusing on enjoying moments in life, developing guidelines for living and relating them to practical issues, and continued recognition of self-destructive behavior patterns—especially substance abuse. These are not brief, educational goals—and because of this, the intervention is comprehensive. Engaging in the process to acquire the awareness, knowledge, attitudes, and skills to make and to maintain these behavioral changes takes time and intensive intervention.

REFERENCES Allen-Meares, P. (1991). Educating adolescents on the dangers of premature childbearing and drug use: A focus on prevention. Special issue: Chemically dependent mothers and their children. Child & Adolescent Social Work Journal, 8(4), 327-338. Archer, S. L. (1990). Females at risk: Identity development for adolescents and divorced women. In C. Vandenplas-Holper & B. P. Campos (Eds.), Interpersonal and identity development: New directions. Psychological development (pp. 87-102).Porto, Portugal: Instituto de Consulta Psicologica, Formacao e Desenvolvimento. Baker, C. J., Huscroft, S., Morris, R., Re, O., & Firpo, R. (1992). Changes in sexual behavior in delinquent youth following risk reduction counseling [Abstract]. Proceedings of the Eighth International Conference on AIDS, 8(3), 201. Baker, R. (1994, April 5). Board of Ed’s AIDS Council doesn’t want kids to know. Village Voice, pp. 11-14. Bayer, R., Levine, C., & Wolf, S. M. (1986). HIV antibody screening: An ethical framework for evaluating proposed programs. Journal of the American Medical Association, 256, 1768-1774. Becker, M. H., & Joseph, J. G. (1988). AIDS and behavioral change to avoid risk: A review. American Journal of Public Health, 78, 394-410. Blumenthal, A., Eichler, G., & Weissman, G. (Eds.). Women and AIDS: Promoting health behaviors. Washington, DC: U.S. Government Printing Office. Burke, D. S., Brundage, J. F., Goldenbaum, M., Gardner, L. I., Peterson, M., Visintine, R., Redfield, R. R., & The Walter Reed Retrovirus Research Group. (1990). Human immunodeficiency virus infection in teenagers: Seroprevalence among applicants for U.S. miliary service. Journal ofthe American Medical Association, 263, 2074-2077. Centers for Disease Control and Prevention. (1994). Recommendations of the U.S. Public Health Service Task Force on the use of zidovudine to reduce perinatal transmission of human immunodeficiency virus. Morbidity and Mortality Weekly Report, 43(RR-11). Centers for Disease Control and Prevention. (1995a). HIV/AIDS surveillance report: U.S. HIV and AIDS cases reported through December 1995, 7(21).

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Centers for Disease Control and Prevention. (1995b). National HIV/serosurveillance summary: Update—1993 (Vol. 3). Atlanta: U.S. Department of Health and Human Services. Centers for Disease Control and Prevention. (1995c). Update: AIDS among women-United States, 1994. Morbidity and Mortality Weekly Report, 44(5). D’Angelo, L., Getson, P., Luban, N., Stallings, E., & Gayle, H. (1989). HIV infection in adolescents: Can we predict who is at risk? (No. M.D.P. 10, p. 712). Abstracts of the Vth International Conference on AIDS. Ottawa, Canada: International Research Development Center. Drotar, D. (1981). Psychological perspectives in chronic childhood illness. Journal of Pediatric Psychology, 6(3), 211-228. Dryfoos, J. G. (1990). A review of interventions to prevent pregnancy. In A. R. Stiffman & R. A. Feldman (Eds.), Contraception, pregnancy, and parenting. Advances in adolescent mental health (Vol. 4, pp. 121-135).London: Jessica Kingsley Publishers. Ekstrand, M. L., Stall, R. D., Coates, T. J., & McKusick, L. (1989). Risky sex relapse, the next challenge for AIDS prevention programs: The AIDS behavioral research project. Abstracts of the Vth International Conference on AIDS (p. 699). Ottawa, Canada: International Research Development Centre. English, A. (1989). AIDS testing and epidemiology for youth. Journal of Adolescent Health Care, 10, 52S-57S. Fox, R., Odaka, N. J., Brookmeyer, R., & Polk, B. F. (1987). Effect of HIV antibody disclosure on subsequent sexual activity in homosexual men. AIDS, 1, 241-246. Fraser, A. M., Brockert, J. E., & Ward, R. H. (1995). Association of young maternal age with adverse reproductive outcomes. New England Journal of Medicine, 332, 1113-1117. Frerichs, R. R. (1995, October). Discussion on future directions of HIV/AIDS research. Presented at UCLA symposium: Ethical Issues Surrounding Mandatory HIV Testing, Los Angeles. Fullilove, M., & Fullilove, R. (1994). Post-traumatic stress disorder in women recovering from substance abuse. In S. Friedman (Ed.), Anxiety disorders in African Americans (pp. 89-101).New York: Springer. Fullilove, R., Fullilove, M., Bowser, B., &Gross, S. (1990). Risk of sexually transmitted disease among African-American adolescent crack users in Oakland and San Francisco, Calif. Journal of the American Medical Association, 263, 851-855. Futterman, D. (1991, January). Medical issues with HIV-infected adolescents. Presentation at the National Pediatric Conference on AIDS, Washington, DC. Futterman, D., Hein, K., Kipke, M., Reulbach, W., Clare, G., Nelson, J., Orane, A., & Gayle, H. (1990). HIV+ adolescents: HIV testing experiences and changes in risk related sexual and drug use behavior [Abstract]. Proceedings of the Sixth International Conference on AIDS, 6(3), 254. Futterman, D., Rogers, A., D’Angelo, L., & Levin, L. (1995, May). Transmission dynamics and clinical status of HIV+ youth. Paper presented at the meeting of the Society for Adolescent Medicine, Vancouver, Canada. Goeddert, J. J., Kessler, C. M., Aledort, L. M., Biggar, R., Andes, W., White, G., Drummond, J., Vaidya, K., Mann, D., Eyster, M., Ragni, M., Lederman, M., Cohen, A., Bray, G., Rosenberg, P., Friedman R., Hilgartner, M., Blattner, W., Kroner, B., and Gail, M., (1989). A prospective study of human immunodeficiency virus type I infection and the development of AIDS in subjects with hemophilia. New England Journal of Medicine, 321, 1141-1148. Goldsmith, M. (1988). Sex tied to drugs = STD spread. Journal of the American Medical Association, 260, 2009. Goldsmith, M. (1993). Invisible epidemic now becoming visible as HIV/AIDS pandemic reaches adolescents. Journal of the American Medical Association, 270, 16-19. Goodman, E., & Cohall, A. T. (1989). Acquired immunodeficiency syndrome and adolescents: Knowledge, attitudes, beliefs and behaviors in a New York City adolescent minority population. Pediatrics, 84, 36-42.

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Hayman, C., St. Louis, M., Petersen, L., Miller, C., Job Corps, U.S. Department of Labor, & Centers for Disease Control and Prevention. (1990). HIV infection in underprivileged teenagers: Update from the Job Corps (Vol. 2, No. F.C. 572, p. 224). Abstracts of the VIth International Conference on AIDS, San Francisco. Hein, K. (1987). AIDS in adolescents: A rationale for concern. New York State Journal of Medicine, 87, 290-295. Hein, K. (1993). “Getting real” about HIV in adolescents. American Journal of Public Health, 83(4), 492-494. Hein, K., Dell, R., Futterman, D., Rotheram-Borus, M. J., & Shaffer, N. (1995). Comparison of HIV+ and HIV– adolescents: Risk factors and psychosocial determinants. Pediatrics, 95(1), 96-104. Higgins, D. L., Galavotti, C., O’Reilly, K., Schnell, D. J., Moore, M., Rugg, D. L., &Johnson, R. (1991). Evidence for the effects of HIV antibody counseling and testing on risk behaviors. Journal of the American Medical Association, 226, 2419-2429. Hingson, R., Strunin, L., Berlin, B., & Heeren, T. (1990). Beliefs about AIDS, use of alcohol and drugs, and unprotected sex among Massachusetts adolescents. American Journal of Public Health, 80, 295-299. Hobbs, N. (1984). Chronically ill children in America. Rehabilitation Literature, 45(7-8), 206-213. Kelly, J. A., St. Lawrence, J. S., Brasfield, T. L., Lemke, A., Amidiei, T., Roffman, R. E., Hood, H. V., Smith, J. E., Kilfore, H., & McNeill, C., Jr. (1990). Psychological factors that predict AIDS high risk versus AIDS precautionary behavior. Journal of Consulting and Clinical Psychology, 58, 117-120. Kirby, D. (1995). A review of educational programs designed to reduce sexual risk-taking behaviors among school-aged youth in the United States. Springfield, VA: National Technical Information Service, #PB 96108519. Koopman, C., Rotheram-Borus, M. J., Dobbs, L., Gwadz, M., & Brown, J. (1992). Beliefs and behavioral intentions regarding human immunodeficiency virus testing among New York City runaways. Journal of Adolescent Health Care, 13, 576-581. Kuebler-Ross, E. (1969). On death and dying. New York: Macmillan Co. Kutchinsky, B. (1988). The role of HIV testing in AIDS prevention. Copenhagen: University of Copenhagen. Lemp, G. F., Hirozawa, A. M., Givertz, D., Nieri, G. N., Anderson, L., Lindegren, M. L., Janssen, R. S., & Katz, M. (1994). Seroprevalence of HIV and risk behaviors among young homosexual and bisexual men: The San Francisco/Berkeley young men’s survey. Journal of the American Medical Association, 272, 449-454. Levine, C., & Bayer, R. (1989). The ethics of screening for early intervention in HIV disease. American Journal of Public Health, 79, 1661-1667. Lindemann, C., & Scott, W. J. (1981). Wanted and unwanted pregnancy in early adolescence: Evidence from a clinic population. Journal of Early Adolescence, 1(2), 185-193. Lundgren, J., Phillips, A., Pedersen, C., Clumeck, N., Gatell, J., Johnson, A., Ledergerber, B., Vella, S., & Nielsen, J. (1994). Comparison of long-term prognosis of patients with AIDS treated and not treated with zidovudine. Journal of the American Medical Association, 271, 1088-1092. Matsuhashi, Y., Felice, M. E., Shragg, P., & Hollingsworth, D. R. (1989). Is repeat pregnancy in adolescents a “planned” affair? Journal of Adolescent Health Care, 10(5) 409-412. Miller, S., & Rotheram-Borus, M. J. (1994). Staying healthy: A training manual for youth. Department of Psychiatry, Division of Social Psychiatry, UCLA. Miller, S., & Rotheram-Borus, M. J. (1995a). Act safe. Department of Psychiatry, Division of Social Psychiatry, UCLA. Miller, S., & Rotheram-Borus, M. J. (1995b). Being together. Department of Psychiatry, Division of Social Psychiatry, UCLA. Moms, R., Baker, C., Huscroft, S., Evans, C. A., & Zeljkovic, S. (1991). Two year variation in HIV risk

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behaviors in detained minors. Abstracts of the VIIth International Conference on AIDS, Florence, 16-21June 1991 (No. W.D. 109). Novick, L., Berns, D., Stricof, R., Stevens, R., Pass, K., & Wethers, J. (1989). HIV seroprevalence in newborns in New York State. Journal of the American Medical Association, 261, 17451750. Orr, D. W., & Adams, N. O. (1987). Life cycle counseling: Guidelines for helping people. Springfield, IL: Charles C. Thomas. Ostrow, D. G., Joseph, J. G., Kessler, R., Soucy, J., Tal, M., Eller, M., Chmiel, J., & Phair, J. (1989). Disclosure of HIV antibody status: Behavioral and mental health correlates. AIDS Education and Prevention, 1(1), 1-11. Perry, S., Fishman, B., Jacobsberg, L., Young, J., & Frances, A. (1991). Effectiveness of psychoeducational interventions in reducing emotional distress after human immunodeficiency virus antibody testing. Archives of General Psychiatry, 48, 143-147. Quinn, T. C., Glasser, D., Cannon, R., Matuszak, D., Dunning, R. W., Klein, R. L., Campbell, C. H., Israel, E., Fauci, A. S., & Hook, E. (1988). Human immunodeficiency virus infection among patients attending clinics for sexually transmitted diseases. New England Journal of Medicine, 318, 197-202. Rabkin, J., & Remien, R. (1991). Depression, stress, and immune status in two HIVpositive cohorts & psychological outlook and suicidality in AIDS long-term survivors. Paper presented at the HIV Center, Columbia University, New York. Remafedi, G. (1987). Male homosexuality: The adolescent’s perspective. Pediatrics, 79, 326-330. Roffman, R. (1991, May). AIDS prevention with gay men. Paper presented at a meeting of the National Institute of Mental Health, Bethesda. Rosario, M., Hunter, J., & Gwadz, M. (1995). The HIV-risk acts and coming-out process of lesbian and gay youths (p. 137). Abstracts of the Annual Meeting of the American Public Health Association, San Diego. Rotheram-Borus, M. J., & Fernandez, M. I. (1995). Sexual orientation and developmental challenges experienced by gay and lesbian youths. Journal of Suicide and Life Threatening Behavior, 25, 1-10. Rotheram-Borus, M. J., Gillis, R., Reid, H., Fernandez, I., & Gwadz, M. (in press). HIV testing, behaviors, and knowledge among adolescents at high risk. Journal of Adolescent Health. Rotheram-Boms, M. J., Hunter, J., & Rosario, M. (1995). Coming-out as lesbian or gay in the era of AIDS. In G. Herek and B. Greene (Eds.), AIDS, Identity, and community: The HIV epidemic and lesbians and gay men. Contemporary perspectives on lesbian and gay psychology. (Vol. 2; pp. 150-168).Washington, DC: American Psychological Association Press. Rotheram-Borus, M. J., Kennedy, M., & Murphy, D. A. (March 1996). Stages of adaptation to AIDS. Presentation at the San Francisco Department of Health Annual AIDS Update. Rotheram-Borus, M. J., Koopman, C., Haignere, C., & Davies, M. (1991). Reducing HIV sexual risk behaviors among runaway adolescents. Journal of the American Medical Association, 266,12371241. Rotheram-Boms, M. J., Murphy, D. A., Coleman, C., Kennedy, M., Reid, H., Futterman, D., Levin, L., Birnbaum, J., Schneir, A., & Cline, T. (1996). Risk acts among HIV+ youths in care over time. Manuscript submitted for publication. Rotheram-Borus, M. J., Murphy, D. A., & Parra, M. (In press). Interventions for adolescents living with HIV. In S. Knapp & L. VandeCreek (Eds.), Innovations in clinical practice: A source book (Vol. 14). Sarasota, FL: Professional Resource Press. Rotheram-Borus, M. J., Rosario, M., & Koopman, C. (1991). Minority youths at high risk: Gay males and runaways. In S. Gore & M. E. Colten (Eds.), Adolescent stress: Causes and consequences (pp. 181-200).Hawthorne, NY: Aldine. Rotheram-Borus, M. J., Rosario, M., Meyer-Bahlburg, H., Koopman, C., Dopkins, S. C., & Davies, M.

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(1994). Sexual and substance use acts of gay and bisexual male adolescents in New York City. Journal of Sex Research, 31(1), 47-57. Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. (1990). Public Law No. 101-381, 104 Stat. 576; 42 U.S.C.A. §300ff et seq. (West Supp. 1991). Schilling, R. F., El-Bassel, N., Schinke, S. P., Gordon, K., Nichols, S., Botvin, G., & Orlandi, M. (1991). Sexual behavior, attitude toward safer sex, and gender among a cohort of 244 recovering IV drug users. International Journal of the Addictions, 26(8), 859-877. Shalwitz, J., Goulart, M., Dunnigan, K., & Flannery, D. (1990). Prevalence of sexually transmitted diseases (STD) and HIV in a homeless youth medical clinic in San Francisco. Abstracts of the VIth International Conference on AIDS (No. S.C.571, p. 231). San Francisco. Sonnenstein, F., Pleck, J., & Ku, L. (1989). Sexual activity, condom use and AIDS awareness among adolescent males. Family Planning Perspectives, 21(4), 152-158. Stall, R. D., Coates, T. J., & Hoff, C. (1988). Behavioral risk reduction for HIV infection among gay and bisexual men. American Psychologist, 43, 878-885. Stricof, R. L., Kennedy, J. T., Nattell, T. C., Weisfuse, I. B., & Novick, L. F. (1991). HIV seroprevalence in a facility for runaway homeless adolescents. American Journal of Public Health, 81 (Suppl.), 50-53. Stricof, R. L., Novick, L. F., & Kennedy, J. (1990). HIV-1 seroprevalence in facilities for runaway and homeless adolescents in four states: Florida, Texas, Louisiana, and New York. Abstracts of the VIth Annual International Conference on AIDS (Vol. 2, No. F.C. 47, p. 101), San Francisco. Watters, J. K., & Guydish, J. (1994). HIV/AIDS prevention for drug users in natural settings. In R. J. DiClemente & J. L. Peterson (Eds.), Preventing AIDS: Theories and methods of behavioral interventions. AIDS prevention and mental health (pp. 209-225). New York: Plenum Press. Welle, D., Luna, G. C., Rotheram-Borus, M. J., & Murphy, D. A. (1996). “It’s a lot of thoughts”: Adolescent women’s grieving and adjustment to HIV. Manuscript submitted for publication. Wortley, P. (1995). HIV testing patterns: Where, why and when were persons with AIDS tested for HIV? AIDS, 9, 487-492.

4

Drug-Using Women and HIV Access to Care and Treatment Issues Gloria Weissman and Vivian Brown INTRODUCTION In Women at Risk: Issues in the Primary Prevention of AIDS (Weissman & Brown, 1995), we discussed the complex issues that surround risk reduction and prevention efforts aimed at drug-using women. Despite these efforts and despite the fact that heterosexual transmission now accounts for more new AIDS cases among women than injection drug use (CDC, 1995), the majority of women living with HIV disease in this country are either active or recovering drug users. The challenges facing these women in obtaining adequate and appropriate care and their providers in giving it are formidable indeed. Until recently there have been no large-scale studies of the natural history of HIV infection in women. Specific treatment protocols for drug-using women need to grow out of the study of the natural history of infection in these women. They also need to take into account the many underlying and sometimes long-standing health issues with which these women frequently present. For drug-using women with HIV there are multiple barriers to access: educational, cultural, economic, psychological, physical, and social. Most of the women have family responsibilities; and many have children or partners/spouses who are also infected with HIV, or may be ill. Many have lost children or partners—to HIV, to violence, to drug abuse, to foster care, and to the criminal justice system. In addition to the psychological access barriers these losses may engender, they tend only to increase these women’s distrust of both systems and care regimens. Many women with HIV are homeless or living in makeshift arrangements with family and friends. Without a stable living situation, receiving GLORlA WEISSMAN • Health Resources and Services Administration, Rockville, MD 20857. VlVIAN BROWN • PROTOTYPES, Culver City, CA 90230. Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 109

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regular care is nearly impossible, and not a first priority. Many of these women are poor at diagnosis and, like others living with HIV, become considerably poorer as their illness progresses. While many are Medicaid eligible, many others are not. Many have undocumented status; others have health insurance that may pay for medical care, but not for mental health or substance abuse services. The same psychosocial realities that impinge on drug-using women’s ability to engage in preventive interventions and to change risk behaviors affect their ability to access and use the medical and other services they need to receive optimal care for their HIV disease. These include: a significant likelihood of sexual, other physical, or psychological abuse (both current and past); significant feelings of powerlessness, psychological distress, and depression; a lack of consistent social supports and related systems and resources; and a lack of available, appropriate, and accessible drug treatment. However, for women living with both HIV and drug abuse, there are additional institutional and psychosocial factors that affect their ability to effectively cope with and utilize service systems, particularly those not designed for their needs. First, many of the psychosocial factors noted above may be exacerbated simply by virtue of a diagnosis of HIV infection; these include especially denial/ fatalism, depression, lack of supports, stigma, and poverty. Second, the primary delivery system for services for drug abusers with HIV is likely to have been designed with men’s needs in mind, since there are approximately three men for every woman living with HIV disease and drug abuse. The largest group of individuals living with HIV have been men who have sex with men, and the overall HIV care delivery system is often oriented toward this population. Third, it has been well documented that drug users as a group have difficulty accessing care for HIV-related illness. A number of studies have compared health care access and utilization for persons living with HIV who do versus do not have histories as injection drug users (IDUs). IDUs with HIV disease have significantly less access to and lower utilization of zidovudine (AZT) therapy than their nonIDU counterparts (Stein et al., 1991; Moore, Hidalgo, Sugland & Chaisson, 1991; Crystal, 1992). Fleishman, Hsia, and Hellinger (1994), Mor, Fleishman, Dresser, and Piette (1992), Seage, Landers, Lamb, and Epstein (1990), and Seage, Hertz, Stone, and Epstein (1993) have found that current and former IDUs reported significantly fewer outpatient visits, more emergency room visits, more inpatient hospital admissions, and lengthier hospital stays than other persons with HIV. This pattern of care utilization has been related to drug users’ lack of stable housing and informal support systems, as well as their difficulties in accessing communitybased services, particularly early in the course of HIV disease (Drucker et al., 1991; Solomon, Frank, Vlahov, & Astemborski, 1991; Bennett, Pascal, & Cvitanic, 1992). Less information has been available on drug-using women’s access to and utilization of HIV-related medical care, but considerable evidence exists that, at

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entry into the health care system, women diagnosed with HIV show a higher rate of serious infections than do men (Stein et al., 1991; Caschetta, 1990; Harvard AIDS Institute, 1991). A number of researchers have found that women are less likely than men to receive AZT, even when studies control for factors such as time since diagnosis, insurance status, exposure category, race, and disability status for Medicaid eligibility (Moore et al., 1991; Stein et al., 1991). A recent study by Hellinger (1993), which analyzed data from the AIDS Cost and Service Utilization Survey (ACSUS), showed that after being diagnosed and gaining access to the medical care system, women receive fewer medical care services than men, even after controlling for income, race, insurance, and geographic differences. More specifically, women living with AIDS receive fewer services than male IDUs with AIDS and asymptomatic women are less likely than men to receive AZT. Finally, given the difficulties active addictions pose for using medical services and adhering to treatment regimens, drug treatment is an essential part of a comprehensive continuum of care for women who are living with drug abuse and HIV. In addition, treatment for substance abuse may facilitate use of other HIVrelated services and reduce risk of reinfection and transmission to others. Yet, it has been well documented that women encounter special barriers in entering drug treatment services. These barriers are described in Weissman and Brown (1995). Even if a woman with HIV can find a treatment slot—and drug treatment services are even harder to find for women with HIV than for other women—treatment models for women have been slow to address their special needs (Wells & Jackson, 1992; Weissman & the National AIDS Research Consortium, 1991).

HRSA/NIDA STUDY In 1992, the Health Resources and Services Administration (HRSA), in collaboration with the National Institute on Drug Abuse (NIDA), undertook a longitudinal, multisite study to elucidate the HIV-related service delivery and service access issues for active/recovering drug users, with a distinct focus on the special barriers women drug users face.* The study is also assessing, over a 3-year *The Project Directors and research organizations in the five cities are: Robert Booth, Ph.D., Project SAFE, University of Colorado Medical Center, Denver; Geoffrey Smereck, J.D., Personalized Nursing Corporation, Detroit; Frederick Altice, M.D., Yale University School of Medicine, New Haven; Adelbert Jones, Ph.D., Desire Narcotics Rehabilitation, Inc., New Orleans; and Linda Cottler, Ph.D., Washington University School of Medicine, St. Louis. George Huba, Ph.D., and Lisa Melchior, Ph.D., of the Measurement Group in Culver City, California, provide general methodological consulting, perform data analysis, and prepare annual and special reports on the study. HRSA collaborators include Sheila McCarthy, R.N., Katherine Marconi, Ph.D., and Moses Pounds, Ph.D. NIDA collaborators were Richard Needle, Ph.D., and Sander Genser, M.D. Gloria Weissman conceptualized and directs the study,

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period, the impact of Ryan White CARE Act Title I funding on the availability of services to this population. In the first year of the study (Baseline Data), 303 HIV-infected drug abusers (187 men and 116 women) were interviewed in five cities-Denver, Detroit, New Haven, New Orleans, and St. Louis (Huba & Melchior, 1994).* The participants were recruited by programs in the community providing HIV prevention outreach or related services (e.g., needle exchange) to drug users. Given their special access issues and service needs, women were oversampled in each city. Interviews with the drug abusers covered their demographic characteristics, their substance abuse and sexual risk behaviors, their HIV testing history, and the course of their HIV disease. Respondents were also asked whether they had needed or used each of a large number of specific health and social services and what barriers they had encountered in finding or using the service. Sample Characteristics The majority of men and women interviewed were African American. Approximately 20% of the men and women described themselves as homeless. Approximately five times as many women as men reported that they had children under the age of 18 living with them. Overall, 75.2% reported use of any drug (not including alcohol) in the last 6 months. More than half reported current use of alcohol. HIV Risk Behaviors Many of those interviewed for the study reported engaging in behaviors that would put them at risk for reinfection and/or transmission of HIV to others. There was a trend for a greater percentage of the women than the men to report having ever exchanged sex for drugs. The gender difference for having ever exchanged sex for money was highly significant, with the rate for the women approximately double that for the men. In terms of current unprotected sexual activity, there was no significant difference between the men and the women interviewed; approximately 30% of the men and women reported having unprotected sex in the last 30 days. In terms of current needle sharing, no significant gender differences emerged; less than 10% of both men and women interviewed shared needles in the last 30 days.

*A full copy of the report is available from Gloria Weissman, HRSA, Room 7A07,5600 Fishers Lane, Rockville, MD 20857.

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HIV Testing A positive HIV test was verified for all of the study respondents. On the average, study respondents reported receiving their first positive HIV test 2.88 years before the interview. Approximately a third of those interviewed received their first positive result more than 3 years ago. Some significant gender differences emerged in terms of experiences regarding both pre- and posttest counseling. A significantly greater percentage of men than women said they understood “what was happening” the first time they were tested; less than two-thirds of the women reported understanding the test’s full meaning. A greater percentage of men than women said they received counseling before both their first and their most recent HIV test; less than a third of the women received pretest counseling the first time and less than a half received it at their most recent test. Significantly more men than women reported receiving posttest counseling after their first test, and there was a strong trend for more men than women to report receiving counseling after their most recent test. More than a quarter of the men and a third of the women reported that no one helped them get services after their first positive test; the gender differences were not statistically significant. At the time of their most recent positive test result, approximately 20% of the men and 25% of the women reported being told that they should get medical services, A significantly higher percentage of men tried to get and actually received medical services and drug abuse treatment after their most recent test. Significantly more men than women also received assistance with basic needs such as food and clothing. Service Utilization and Access Barriers There are significant gaps between the services men and women perceived needing and the services they reported receiving in the last six months. The differences between what was needed and what was received were highly significant for both genders for the following: drug detoxification, short-term residential drug treatment, long-term residential drug treatment, outpatient drug maintenance, outpatient drug-free treatment, day treatment, long-term housing, overnight shelter, food and clothing, dental services, HIV self-care, HIV home care, outpatient mental health services, self-help groups, family counseling, vocational training, case management, and HIV testing for someone else. For example, 28.7% of the women reported they needed drug detoxification services, while only 12.1% reported receiving such services; 16.4% reported needing overnight shelter, while 7.8% reported receiving shelter. For many of the services, a greater percentage of women than men indicated that a lack of child-care options would significantly impact their ability to access

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services. Cost, transportation difficulties, and having to wait too long were the barriers most often mentioned by respondents.

OVERCOMING BARRIERS TO CARE Cultural sensitivity, cultural relevance, and cultural competence are of paramount importance as we attempt to improve access to care for women with HIV. We cannot and should not ignore the fact that most drug-using women with HIV are members of racial/ethnic minorities. On the other hand, we must remember that drug use is its own, very powerful culture. In addition, women, whatever their racial or ethnic background or their experience with drugs, share a culture. In access to care, many of the issues facing women cut across lines of race, ethnicity, class, and sexual preference and many relate, first and foremost, to gender issues. Women are socialized differently and follow a different developmental path, which inclines them to act primarily in relation to others and others’ needs rather than their own. This difference extends to women’s health-seeking behaviors. For example, women with HIV often will seek care for their partners and their children and neglect their own health. This may be one of the most important factors associated with women’s later entry than men into the HIV care system. Just as it is a major prevention issue, physical and sexual abuse is a major care issue for drug-using women living with HIV. Helping a woman with HIV who is being battered find a way out of that situation, through specialized counseling and housing, may be the most important care a provider can render her; it may also be the one service without which access to other services is rendered meaningless. Yet many providers of HIV care are unprepared to cope with the complex issues of violence and victimization; many have not even been trained to recognize it. In general, many of these so-called “hard to reach” women are those to whom providers have been most reluctant to reach out and with whom they are least knowledgeable about working. These women often are not the kind of clients providers like to serve. To ensure that they get adequate HIV care will require extensive training of providers, including cross-training on HIV and drug use. PROTOTYPES Cross-Training Consortium in Los Angeles has developed specialized modules on issues specific to women (both adult and adolescent), HIV, and drug use to be used in the training of HIV providers, substance abuse treatment providers, and adolescent services providers. Such training is essential to the delivery of more appropriate services to drug-using women with HIV. We can fund more providers, we can make clinics and AIDS service agencies more hospitable to drug-using women, we can train staff to deal more sensitively with the women—and we need desperately to do all of these—but the fact remains that many of these women will probably still not come to care providers. Overcoming this barrier will require considerable pressure on the system by advocates and

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the use of innovative outreach, drug treatment, and case management strategies, some of which are discussed below. Outreach as the First Step in Access In order to reach drug-using women with HIV, providers are going to have to put aside business as usual and go out into the community to find them. Because many drug-using women are unwilling or unable to enter substance abuse treatment, because appropriate treatment is not always available, and because abstinence may be an unrealistic goal for some women with HIV, these outreach efforts must include specific efforts to reach actively drug-using women who are outside the treatment system. The need for sensitive, but aggressive, outreach strategies is discussed in detail in Women at Risk: Issues in the Primary Prevention of AIDS (Weissman & Brown, 1995). For women living with HIV, the use of peers (other women living with HIV) and incentives, such as foodbanks, child care, and diapers, may be particularly important features in outreach programs. In addition, since some recovering women may relapse into substance abuse when they are diagnosed with HIV, they may need especially enhanced outreach. Needle exchange programs have been successful in increasing access to and utilization of drug treatment. However, the ability of needle exchange programs to reach more women must be enhanced (Weissman & Brown, 1995). In addition, needle exchange programs often have high client turnover. Repeated outreach and follow-up efforts may be needed to keep users connected to the services offered by needle exchange programs. In conducting outreach, it is important to remember that drug-using women with HIV have to bear a double burden of isolation and stigma, that facing drugusing women in general and that conferred by HIV. Additional issues exist for pregnant women living with HIV. For example, they may be concerned that they will be urged to terminate their pregnancies. The very real fear women have of losing their children to the social service or legal system if they reveal drug use and/or HIV status has become an increasingly significant barrier to outreach and treatment. The Role of Substance Abuse Treatment For a woman with HIV who is a drug user, clearly addressing that drug abuse is a crucial aspect of the continuum of HIV care. Since the majority of women with HIV continue to be drug users, the lack of affordable, acceptable, and accessible drug treatment for them is a major access to care issue. This situation is beginning to change. Many drug treatment programs are now giving priority admission to HIV-

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infected and/or pregnant women. In addition, to meet the special needs of women living with HIV, drug treatment programs are reexamining their “rules” and procedures. Some of the newer protocols allow for: • Concept of harm reduction—rather than a strict abstinence model • Complex medication regimes for women who are dually or multiply diagnosed (e.g., drug user with mental illness who is HIV-infected and depressed) • More flexible readmission policies for women who relapse • Individually tailored treatment—each woman does not get the same program (for example, the types of groups a woman with HIV may be offered could be based on the stage of her illness; specialized groups on medications such as AZT could be offered; a woman who has lost a partner or child to AIDS would participate in a grief and loss group; a woman who is pregnant would participate in a pregnancy and HIV group; a woman with early signs of dementia would be assisted individually to learn specialized coping strategies) • Women in residential treatment resting when fatigued and taking a “leave” for temporary hospitalizations for HIV-related symptoms/illnesses Care Coordination and Case Management Outreach and prevention projects have taught us critical intervention principles that can be applied to improve access to care for drug-using women through innovative case management and support strategies. To engage and retain women in care, two principles are key: sensitivity to their perceived needs, and understanding of the context of their lives. As the data suggest, most of the women have multiple needs and multiple problems; lack of transportation and the need for multiple services are concrete obstacles to care for women living with substance abuse and HIV. These can be reduced through the “one-stop shopping” model of care. This model can allow for most/all services, including medical care, drug treatment, mental health, and pharmacy, to be provided at one location or facility. Utilizing this model, some comprehensive drug treatment programs have incorporated HIV testing, primary care, and mental health services. This ensures that women view health and HIV services as an integral part of their drug treatment. Many programs have implemented HIV services in locations where women already receive health care, such as Community or Migrant Health Centers. Many of these models are funded through the Title IIIb Program of the Ryan White CARE Act, administered by HRSA. In other programs, including those funded through HRSA’s CARE Act Title IV Program and the Special Projects of National Significance under Title 11, care for both mother and child is coordinated. This

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family-centered approach reduces obstacles to access and enhances the strengths inherent in the family unit. Another effective model that improves access to care for women living with substance abuse and HIV is one in which drug outreach and treatment programs establish strong linkages with health/HIV services in their communities. In this model, case managers ensure that referrals are sensitive and that follow-up and monitoring occur. Another lesson of HIV prevention projects working with drug-using women is that indigenous workers—who may share not only a community, but also a history of drug abuse and/or HIV with their clients—can act as bridges between the women and the care systems these women are being encouraged to access. In many cases, such workers are needed literally to bring the women to the service providers, to walk them through the system, and to follow up with the women once they begin to participate in the services. In addition, the importance of building peer networks to increase both support and access to care for drug-using women with HIV cannot be underestimated. Other strategies being tried to offer support and increase access include the use of older women volunteers to serve as role models, surrogate parents, and advocates. OUTREACH, Inc. in Atlanta has evaluated the efficacy of such a program through a Special Projects of National Significance (SPNS) grant from HRSA and found that it increased consistent use of drug treatment, medical, and other services by women living with drug abuse and HIV. Utilizing these community-based workers and volunteers is not enough; their unique skills and contributions must be truly valued by colleagues and their voices heard as decisions are made about designing and implementing systems of care. Given the documented lack of effective social supports among drug-using women, and the great need for support by individuals dealing with a life-threatening and highly stigmatized disease such as HIV, it is important to develop innovative strategies for building such support into these women’s lives. HIV Testing How certain events in the course of HIV disease are handled is absolutely crucial in ensuring that drug-using women access the entire continuum of care they need. Perhaps the most important of these is HIV testing, which is often seen as a part of prevention, but which is, in fact, also a critical care component. It is at the point of testing—at the point of pretest counseling, in fact—that we may have the best chance of ensuring access to care for a woman with HIV. Before instituting outreach and routinely recommending HIV testing for women, care providers and policymakers have an ethical duty to create the care systems these women need and to ensure that effective mechanisms for follow-up are in place. If we do not actively and immediately link women who have just been diagnosed with HIV to the

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services they need, we may miss our golden opportunity to help them access the system. A positive HIV test result will not, by itself, propel most women into care. In an ongoing natural history study of self-reported health care utilization by IDUs, the single most important predictor of utilization was the presence of two or more HIV-related clinical symptoms. HIV-positive serostatus alone or known low CD4 counts were not significantly associated with increased use (Solomon, Celentano, & Vlahov, 1991). Yet, as the recent HRSA/NIDA study (Huba & Melchior, 1994; Weissman et al., 1995) demonstrates, many drug-using women are receiving inadequate preand posttest counseling and linkages with services are often problematic. Their experiences around counseling, testing, and early intervention are significantly different than their male counterparts. This suggests that protocols and quality assurance procedures must be in place at all testing sites serving women to ensure that adequate pre- and posttest counseling is performed. We need to assess at every stage whether the woman understands the language and concepts of testing, what services she needs, and how to access them. One to three sessions may be required. This issue becomes even more complex and even more critical in light of the findings of clinical trial 076. Given that discussion of AZT’s role in reducing perinatal transmission may now become a standard part of counseling and testing protocols for pregnant women and given that women care what happens to their infants, it is the responsibility of providers to ensure that women understand as much as possible about the potential risks and benefits of AZT during pregnancy and postpartum and can make truly informed decisions. It is also critical to ensure that referrals made during posttest counseling can be used by the women. Given the fact that the receipt of a positive test result is an extremely stressful situation for the client, follow-up of these referrals is essential. It is interesting to note that in the HRSA/NIDA study the individuals most likely to help clients obtain services were physicians; this suggests the critical role that physicians have to play in linking drug-abusing women with services, as well as the fact that most testing of women may be occurring in medical settings. Need for Advocacy Women generally have less power than men at every level; this may be true whether we are talking about planning bodies making decisions about how money should be spent, about service organizations deciding how to focus their efforts and train their staff, about researchers setting up clinical trial protocols, and about the woman sitting in a physician’s office trying to make decisions about her own care. As discussed previously, the experience of outreach and prevention projects suggests that programs for drug-using women must devote considerable attention and resources to advocacy activities focused on building the external resources

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(e.g., affordable housing, adequate and appropriate drug treatment programs, child care, income alternatives) needed to provide women with some real power over their lives and to sustain individual behavior changes. In fact, advocacy must be integrated into the continuum of care at every level for drug-using women with HIV. In addition, providers of services to drug-using women have a particular responsibility to inform policymakers and others about the special needs of these clients and to advocate on their behalf. For example, policymakers calling for mandatory or routine testing of pregnant women without consent, in response to ACTG 076, need to understand that the unintended consequence of such policies may be to drive more drug-using women away from prenatal care and thus cost the lives of women and children, rather than saving them.

CURRENT RESEARCH PRIORITIES Clearly, there are inadequate HIV-related services for drug-using women. More funding is needed, but it is important that the programs funded be effective and based, whenever possible, on sound research. More research also is needed on the factors that influence women to seek and remain in care. There is a considerable literature on factors affecting access to family planning and prenatal care, but we must remember that women are more—and need care for more—than just their reproductive systems. It is also critical that we implement, evaluate, and disseminate successful models for engaging and retaining women who are living with both drug abuse and HIV disease in a continuum of medical, psychosocial, and support services. Three projects funded by HRSA’s SPNS program in Detroit, Los Angeles, and Atlanta currently are testing the efficacy of innovative, community-based approaches to meeting the needs of this population.

CONCLUSION Women living with the dual burden and dual stigma of drug abuse and HIV disease face numerous, complex barriers in accessing and utilizing the medical and other services they need. Some of these are internal and stem from gender issues, drug use, or drug use histories. The same psychosocial realities that impinge on the ability of women who abuse drugs to engage in preventive interventions and to change risk behaviors affect their ability to access the care they need if they become infected with HIV. Other barriers are institutional or systemic. Some of these relate to issues of provider training, sensitivity, and willingness to treat this population; some arise from the fact that many programs were established or designed for men or for individuals outside of the drug use culture and cannot meet

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these women’s special needs; and some relate to deficiencies in the overall system of care for people with HIV in general, and for drug users and women living with HIV in particular. A number of recommendations for improving access and utilization of care for drug-using women were discussed. These include: expanding outreach to women living with HIV; changing drug treatment policies and procedures; implementing one-stop shopping models of care; building peer networks and ongoing support structures for and with the women; improving HIV counseling and testing procedures to ensure that women understand the testing and the services needed; cross-training of providers in women’s issues; and enhanced advocacy for women living with drug abuse and HIV disease.

REFERENCES Bennett, C. L., Pascal, A., & Cvitanic, M. (1992). Medical care costs of intravenous drug users with AIDS in Brooklyn. Journal of Acquired Immune Deficiency Syndromes, 5, 1-6. Caschetta, M. B. (1990). Clinical manifestations of HIV infection in women. Treatment Issues, 5(1), 3. Centers for Disease Control and Prevention. (1995). Update: AIDS among women—United States, 1994. Morbidity and Mortality Weekly Report, 44(5), 81-84. Crystal, S. (1992). Health-care barriers and utilization patterns among intravenous drug users with HIV disease. AIDS and Public Policy Journal, 7(3), 187-198. Drucker, E., Rothschild, J., Poust, B., et al. (1991). Drug users with AIDS in the city of New York A study of dependent children, housing, and drug addiction treatment. In N. F. Mackenzie (ed.), The AIDS reader: Social, political and ethical issues. New York: Meridian. Fleishman, J. A., Hsia, D. C., & Hellinger, F. J. (1994). Correlates of medical service utilization among people with HIV infection. Health Services Research, 29(5), 527-548. Harvard AIDS Institute. (1991). AIDS drug development and testing: A roundtable discussion. The AIDS Report, May-June, 5-12. Hellinger, F. J. (1993). The use of health services by women with HIV infection. Health Services Research, 28(5), 543-561. Huba, G., & Melchior, L. (1994). Summary report: Evaluation ofthe effects of Ryan White Title I funding on services for HIV-infected drug abusers: Baseline data: Year I (DHHS Publication No. HRSA-RD-SP-94-8). Rockville, MD: Health Resources and Services Administration, National Institute on Drug Abuse, Consortium on Drug Abuse and HIV Services Access. Moore, R. D., Hidalgo, J., Sugland, B. W., & Chaisson, R. E. (1991). Zidovudine and the natural history of the acquired immunodeficiency syndrome. New England Journal of Medicine, 324, 1412-1416. Mor, V., Fleishman, J. A., Dresser, M., & Piette, J. (1992). Variations in health service use among HIVinfected patients. Medical Care, 30, 17-29. Seage, G. R., Hertz, T., Stone, V. E., & Epstein, A. M. (1993). The effects of intravenous drug use and gender on the cost of hospitalization for patients with AIDS. Journal of Acquired Immunedeficiency Syndromes, 6(7), 831-839. Seage, G. R., Landers, S., Lamb, G. A., & Epstein, A. M.(1990). The effect of changing patterns of care and duration of survival on the cost of treating the acquired immunodeficiency syndrome (AIDS). American Journal of Public Health, 80 (7), 835-839. Solomon, L., Celentano, D. D., & Vlahov, D. (1991). HIV-infection prevention messages for injecting drug users: Sources of information and use of mass media—Baltimore 1989. Morbidity and Mortality Weekly Report, 40, 465-469.

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Solomon, L., Frank, R., Vlahov, D., & Astemborski, J. (1991). Utilization of health services in a cohort of intravenous drug users with known HIV-I serostatus. American Journal of Public Health, 81(10), 1285-1290. Stein, M. D., Piette, J., Mor, V., et al. (1991). Differences in access to zidovudine among symptomatic HIV-infected persons. Journal of General Internal Medicine, 6, 35-40. Weissman, G., & Brown, V. (1995) Drug-using women and HIV Risk-reduction and prevention issues. In A. O’Leary and L. S. Jemmott (Eds.), Women at risk: Issues in the primary prevention of AIDS (pp. 175-193).New York: Plenum Press. Weissman, G., & the National AIDS Research Consortium. (1991). AIDS prevention for women at risk: Experience from a national demonstration research program. Journal of Primary Prevention, 12(1), 49-63. Weissman, G., Melchior, L., Huba, G., et al. (1995). Women living with substance abuse and HIV disease: Medical care access issues. Journal of the American Medical Women’s Association, 50, 115-120. Wells, D. V., & Jackson, J. F. (1992). HIV and chemically dependent women: Recommendations for appropriate health care and drug treatment services. International Journal of the Addictions, 27, 571-585.

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“Selective Kin” Defining the Caregivers and Families of Children with HIV Disease Claude Ann Mellins, Anke A. Ehrhardt, Lucile Newman, and Michael Conard INTRODUCTION It is clear that HIV disease in women and children can have devastating consequences for the entire family system. New York City has one of the fastest growing rates of HIV infection in children in the United States, with nearly all HIV-infected children acquiring the virus from their mothers during pregnancy. It has been estimated that 1.2% of pregnant women in New York City are HIV-infected (New York State Department of Health, 1992) and with vertical transmission rates of 1130%,* there will be increasing numbers of families with both an HIV-infected mother and child. Unlike other chronic illnesses, multiple members of a family can become HIV-infected, particularly mothers and children, but also fathers and siblings. Furthermore, the disease can have severe consequences for uninfected

*Most longitudinal studies in the United States and Europe report that mother-infanttransmission rates of HIV disease range from 11 to 30% (Oxtoby. 1994). Recently, investigators have focused on maternal characteristics that might increase or decrease risk of transmission. In 1994, a study sponsored by NIH demonstrated that use of antiretrovirals during pregnancy and labor could significantly reduce the rate of HIV transmission to newborns by as much as two-thirds (Conner et al., 1994).

CLAUDE ANN MELLlNS and ANKE A. EHRHARDT • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, and Department of Psychiatry, Columbia University, New York, NY 10032. LUCILE NEWMAN • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, New York, NY 10032; and Department of Community Health, MICHAEL CONARD • Department of ArchitecBrown University, Providence, RI 02912. ture, Columbia University, New York, NY 10025. Women and AIDS: Coping and Cure, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 123

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members of the family who must live with and care for their potentially terminally ill relatives. The role of the family in preventing and helping individuals cope with HIV disease is of increasing interest to both clinicians and researchers (Levine, 1990; Mellins & Ehrhardt, 1994a; Sherwin & Boland, 1994). However, this area of research is hampered by the lack of a unifying definition of “family.” In the United States in 1990, only 23% of households were characterized by a married couple with children under the age of 18 years (U.S. Bureau of the Census, 1990). Yet in spite of this statistic, the most dominant American definition of “family” continues to be a “nuclear family,” and the vast majority of research on family functioning has been on white middle-class families consisting of one mother, one father, and several of their biological children. Families affected by maternal and pediatric HIV are not typically represented by such a “nuclear” structure. Given the linkage of HIV infection and substance use, these families have often had to cope with the impact of parental substance use and chronic poverty, as well as AIDS-related illness and death on family structure. Family disruption is not an uncommon experience for children affected by pediatric HIV disease. The limited literature on this population suggests that their family situations are characterized by diversity and change. For example, early in the epidemic, many HIV-infected newborns and children were abandoned at the hospital. These so-called “boarder babies” spent their first few years living in institutions. With increases in subsidies for the foster care placement of HIVinfected children in some states, many of these children moved into the foster care system. By the time these children were 2 or 3, many had already experienced several different living situations (e.g., birth mother’s home, hospital, foster care placement). In addition to foster care placements, many HIV-infected children are formally or informally placed with extended family members such as grandmothers or aunts as a result of parental substance use or illness. In several studies of HIVinfected children, it has been reported that less than 50% are living with a birth parent because of maternal substance use during pregnancy, or maternal illness and death. For example, Heslin (1993) found that the majority of family units seen at the AIDS program at Bellevue Hospital in New York City were single-parent households as a result of incarceration, drug use, or death of a parent. A similar picture emerges in other countries. Gurbino, Hoez-Sampelayo, Arana, Moreno, and Escudero (1992) reported on 33 HIV-infected children living in Madrid. They found that 24% of these children lived with parents, 42% were in institutions or foster care, 4% were adopted, 21% were with grandparents, and 9% with uncles. Children with HIV disease have often lived in more than one family system and have experienced numerous separations from caregivers as they move among different foster care homes or back and forth between their mother’s care and that

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of a relative or foster parent. The projected numbers of HIV-infected mothers and children warrant an understanding of family structure and functioning, as well as of who provides care to children. However, since we are lacking comprehensive and realistic definitions of “family” that characterize the diversity of this population, it is difficult for researchers to examine the impact of HIV on family functioning and to identify “family” members for intervention/prevention programs. Such information may have substantial economic, medical, custody, housing, and psychosocial implications. The present chapter will focus on the family in the context of pediatric HIV and will: (1) provide an alternative way of conceptualizing “family,” (2) use this conceptualization to examine stress and coping in women and children affected by HIV disease, (3) discuss the contributions of HIV, substance use, poverty, culture, and gender to this conceptualization of “family,” and (4) discuss the implications of this approach for helping women, children, and their “families” adapt to HIV/ AIDS, as well as for policy decisions about their care.

SELECTIVE KIN Traditional notions of the family have focused on blood ties. In the United States, “family” has typically referred to a mother and father and their birth children. However, as noted this “nuclear” definition of “family” does not apply to the large majority of the families affected by HIV disease (Cohen, 1994; Levine, 1990; Mellins & Ehrhardt, 1995). The ongoing use of this traditional definition of “family” as a reference point perpetuates a normative belief of what a family “should be,” thereby implying that there is something abnormal about the families of HIV-infected children. In addition, this outdated definition has influenced policy decisions such as who is eligible for benefits, inheritance, housing, and who should provide care. These decisions are often not in the best interests of the children. In order to describe the families of HIV-infected children, we are proposing an alternative method of defining and illustrating the structure and diversity of families. We have developed a classification system based on the genograms of 25 families affected by pediatric HIV disease, as well as data on household composition, on who provides care, and on who provides emotional, practical, and financial support to the children. Given that the word “family” has such strong connotations, we chose an alternative term to describe these configurations. “Selective kin” represents both need and variation in the caregiving situations of children affected by pediatric HIV disease. Levine (1990) reviewed some essential characteristics of family relationships, including: permanence (intention), commitment to economic, social, and emotional support, and intimacy. Based on these characteristics, she defined family as “individuals who by birth, adoption, marriage or

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declared commitment share deep, personal connections and are mutually entitled to receive and obligated to provide support of various kinds to the extent possible.” We believe that the term “selective kin” encompasses this definition.

FAMILY STUDIES PROJECT The Family Studies Project was started in 1990 to examine the impact of HIV disease on women, children, and their families. The first study was a qualitative study, conducted between 1991 and 1993 on families in which there was an HIVinfected preschool or school-age child (Mellins & Ehrhardt, 1994b). The goals of the study were to: (1) describe the caregivers and families of children affected by HIV disease, (2) describe the stressful events experienced by these families and their use of coping strategies, and (3) explore what psychological and social needs were not being met. We will describe some of the results from the qualitative study, focusing on the research participants’ descriptions of “family” and the differential experiences of families with varying configurations. Method The method for this project has been described elsewhere in detail (Mellins & Ehrhardt, 1994b). In brief, 25 families with an HIV-infected child were recruited from pediatric primary care clinics at three metropolitan hospitals in New York City. Families were eligible for the study if the HIV-infected children had acquired the virus through perinatal transmission and were at least 4 years of age. We interviewed all family members living together for whom we were able to obtain consent. In total, 52 family members were recruited, including HIV-infected children, caregivers, and uninfected siblings. Reflecting the HIV epidemic in New York City, these families were primarily African American and Latino and they were socioeconomically disadvantaged. On average, there were five members per household. Each adult family member was given an open-ended qualitative interview with questions concerning family structure, household composition, social support, stressful life experiences, and coping strategies. Research participants were interviewed individually at their respective clinics or homes. On average two members from each family were interviewed. In order to assess family composition, each caregiver was asked to create a family genogram. They were also asked, “Who is in your family, who lives in your house, and do you have children outside of your home or who have died?” In addition, they were asked a variety of questions on caregiving, specifically on who provides different types of care and who is available as a “backup” for the primary

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caregiver. The primary caregiver was defined as the person with legal custody and/ or primary responsibility for the care of the child. In the present study, all caregivers with primary responsibility for the care of the HIV-infected child also had legal custody. In this sample, there was only one married couple (foster parents) who functioned as coparents and shared all caregiving responsibilities equally. In the remaining 24 selective kinships, there was only one primary caregiver, who was usually a single female caregiver. Secondary caregivers were defined as people who assisted in the care of the child on a regular basis (e.g., take children to medical appointments or school, baby-sit, provide meals, provide social activities). These people may or may not live in the household. In the present study, secondary caregivers included: (1) the father of an HIV-infected child who did not live in the household but who visited every day and participated in the daily care of the child, (2) a grandmother who did not live in the household but who was responsible for the HIV-infected child’s medical care, including arranging and taking the child to all medical appointments, (3) several adult daughters of foster care mothers who lived in the house and sometimes functioned as “coparents,” (4) the brother of a foster care mother, who did not live in the child’s house, but who visited every day in order to help care for the children, as well as assist with shopping, health care visits, school appointments, and recreational activities for the children, and (5) the new girlfriend of an HIV-infected father who moved into the house with her two children. In addition to secondary caregivers, many of the primary caregivers also mentioned people they considered to be “family” and who provided social support (including emotional, practical, and child care support) on a semiregular basis. These tertiary caregivers included: grandparents, sisters and brothers, neighbors, and best friends of the primary caregiver. HIV-infected children often called these people “aunt” or “uncle,” regardless of whether or not they were blood relations. Selective Kin Configurations After reviewing the 25 family genograms and interview questions related to family composition, what was most clear to us was that there was not one single family system, nor an expected way that family members came together to accomplish the care of children. Rather, it was done by those who were willing to take responsibility, who were, at a particular time, able to take over care, supporting the concept of selective kin as a term to describe the multiple configurations of the families in this study. Graphic representations of data can be effective in illustrating the diversity and richness of a particular data set. Graphic representations of family (e.g., genograms) have been useful in clinical work in describing relationships and blood ties among family members. However, genograms become unwieldy when used to

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describe non-nuclear family systems with nonblood ties. Boyd-Franklin (1994, personal communication) discusses the “messy genogram” as being the outcome of attempts to represent the structure of many African-American families. In order to graphically present the configurations of selective kin found in this study, we use different housing forms to provide a pictorial representation. The diversity of caregiving structures can be captured in the variations of housing forms, allowing us to describe the many ways in which kin come together in different arrangements to care for an HIV positive child as well as other siblings. Among the 25 families, there were no two selective kin configurations that were exactly the same. Thus, we initially illustrated 25 different houses. Similar to housing structures, the possibilities of selective kin configurations are endless. However, there were several characteristics that were common to many of the caregiving arrangements. Thus, instead of presenting all 25 houses we have selected 12 of the 25 houses that represent the majority of “selective kin systems’’ identified in this study (houses 1-12).In Figure 1, the first house represents the traditional “nuclear family,” with a mother and father who are married and who have produced two children. There were no children in this study whose selective kin were represented by this drawing. The key at the top of Figure 1 indicates the various components of each child’s selective kin. Similar to traditional genograms we have used circles and squares to reflect the gender of the selective kin member (circle = female, square = male). Each floor of the house (represented by adjacent boxes) represents a different generation, with the bottom floor representing the youngest of age. The roof of each house (triangles) represents the primary caregiver and any secondary caregivers of the same generation (e.g., sexual partners, spouses, siblings of the primary caregiver, etc.). If a member of a given generation does not live in the household and is not considered to be kin, an empty box is drawn. Children may be related by blood, by foster care or adoption, by marriage, or by informal care arrangements. Blood ties to the primary female caregivers (including those who have died) are indicated by bold perimeter lines. Paternal bloodlines are characterized by dots at the base of each box. For example, the father of the oldest children (considered to be the first father in the house) has one dot at the base of his triangle and his children have one dot at the base of each of their boxes. If there is a child from a second father, that child has two dots at the base of his or her box. The order of siblings for each father is indicated by dots on the left side of the children’s boxes. Thus, the first child of the first father has one dot on the side and one dot on the bottom. The second child of that father has two dots on the side and one dot on the bottom. The first child by a second father would have one dot on the side and two dots on the bottom. Adoptive and foster care children are represented by cut-off squares attached to the houses’ left and right sides, respectively. HIV-infected individuals are

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represented by a line across the middle of the circle or square within the triangle or box. A cross in the circle or square indicates that the individual has died of AIDS. An X in the circle or square indicates death by some other cause. In one case (house 10), there are two caregivers in the second generation who both have children in the third generation. In order to clarify which children belong to which caregiver, a second square is drawn around each member of the third generation. The inside square describes the child, in terms of paternity and sibling order. The dots on the outside square correspond with the respective parent of that child. Thus, in the case of house 10, the birth daughter of the primary caregiver has one son of her own. The birth son of the primary caregiver has two children, a son and a daughter. Often, there are people outside the house who are considered to be selective kin (i.e., they, as well as the primary caregiver, provide substantial care and support to the children). These people may be blood relatives. However, sometimes they are not related by blood, but are considered to be “fictive kin” (Boyd-Franklin, 1989). Regardless of relationship, they meet our definition of selective kin and need to be considered. We have drawn circles and squares outside the house to depict these “fictive kin” (e.g., house 3). If the people are related by blood, we have connected them to caregivers using a genogram system (houses 1, 2, 3, 4, 7, 11, and 12). For example, in house 4, the oldest child of the primary caregiver does not live in the house. His square is drawn outside the house, but connected to his mother by a genogram line. Finally, we have tried to show change over time in selective kin configurations. In two cases (houses 2 and 5), we have drawn the new caregivers (one of whom has two children included) who moved into the household after a parent died. The symbols for these kin are shaded. We have placed the 12 houses from this study into four categories of selective kin, based on the relationship between the primary caregiver and the HIV-infected child. The most frequent selective kin structure found in this sample (32%; 8 of the 25 families) consisted of an HIV-infected birth mother living with several children from several different fathers. Four of the eight selective kin systems in this category are presented in Figure 1. These four houses were selected because they depict the variety of configurations that characterize HIV-infected children living with their HIV-infected mother as the primary caregiver. The houses differ in terms of: • Secondary caregivers (a male partner, house 3; a female friend, house 2; the father of the HIV-infected child who is not living in the house on a regular basis, house 4) The number of children with different fathers (e.g., in house 1 the children all had the same father, whereas in house 4 there have been three fathers)

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The path of HIV disease (e.g., in house 6 all of the members are HIVinfected, whereas in house 3 the new partner of the mother and two of the children are HIV-negative) In some cases, an HIV-infected child or father who was living in the household had already died (e.g., houses 1 and 2) and in other cases, a new caregiver (male or female) had moved in to assist the mother (e.g., houses 2 and 3). Nonblood and blood kin were sometimes available to the mother and child (e.g., houses 2 and 3), although not always. Sometimes, the mother has other children who do not live in the household (e.g., house 4). Finally, for many mothers there may be a father who does not live in the house, but who provides substantial care to the children (e.g., house 4). A more detailed case example of this type of configuration is presented below representing house 2. Carmen is a Latina HIV-infected mother caring for her 7-year-old HIVinfected son, Mario, from her most recent marriage, as well as two uninfected teenage sons from a different relationship. Mario’s father acquired HIV from a transfusion. He transmitted the virus to his wife and she to Mario during pregnancy. Mario’s father died 2 years prior to this interview. Mario has been hospitalized many times, primarily for ear infections and neurological problems. Carmen experienced herfirst opportunistic infection, for which she was hospitalized l month prior to the interview. At that time, Carmen asked a female friend to move into the house to assist with care and rent. Thisfriend will take over the care of the children when Carmen dies. While Carmen believes that she must take on most of the caregiving responsibilities and that no one can provide the same kind of comfort to her sons that she can, she has been able to derive support and assistance from herfriend, her mother, and her sister: Thus, Mario is beginning to depend on four caregivers, as well as his two older brothers. However, the fear of loss and separation from his mother results in his clinging to her and his desire to sleep in her room instead of with his brothers. While the majority of primary caregivers were women, in 5 of the 25 selective kin groups, the primary caregiver was a single father, 3 of whom were HIVinfected. Two of these cases are represented by houses 5 and 6. In house 6, the father is the birth father of the HIV-infected child. All of the members of this selective kinship are/were HIV-infected and the birth mother has recently died. Tom and Miranda, a white married couple, met while both were injecting drugs. After several years of substance use, they were both able to stop when Miranda became pregnant. Tom was able to get a job and Miranda became a fulltime mother: They were happy and on their way to fulfilling their “American dreams.” However, when their child, Ben, was 4 years old, Mirandafound out that she had AIDS. Shortly after, Tom and Ben tested positive for the virus. Miranda died 2 year later: At the time of the study interview, Tom and Ben were living on their own. While both Tom and Miranda had many friends and blood relatives, Tom and Miranda were the primary selective kin for their son. After Miranda died,

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Tom and Ben became somewhat isolated. If Tom dies before Ben, Ben will go to live with his paternal uncle. However, at the time of the study interview, the uncle was not involved in Ben’s care and not in touch with Tom. Therefore, he was not considered by Tom or Ben to be selective kin. In house 5, the HIV-infected father is the stepfather of the children. The children’s birth mother had died of AIDS. In addition, she and the stepfather had a child who also died of AIDS. Similar to house 6, the parents’ HIV diagnoses were made after both had stopped using drugs and had stabilized their family. Recently, the stepfather’s new girlfriend moved into the house with her two children. As mentioned previously, selective kin can change for children over time. In house 5 (as well as in house 3), we have tried to depict changes in caregiving arrangements by including previous caregivers who have died as well as the new selective kin configurations. In house 5, the surviving children initially lived with their mother, then with their mother and stepfather, then with their stepfather alone, and now with their stepfather, his new girlfriend, and her two children. In house 3, Mario first lived with his mother, father, and stepbrothers. After his father died, he lived with his mother, stepbrothers, and mother’s friend. If his mother dies before he does, his “selective kin” will change again. The second most common type of selective kin structure that we found in this sample was characterized by an older female caregiver, either a grandmother, great-grandmother or great-aunt who had already raised her own children and now is raising the next generation of children (e.g., houses 7-10).House 9 is an example of this type of situation in which the path of HIV has been devastating. Daphne is an African-American grandmother who has been caring for her three HIV-infected grandchildren since they were infants (the children were removed from their mother’s home because of her drug use). At the time of this interview, the youngest grandchild and the mother had died of AIDS. Daphne is currently caring for her son (the children’s father who is sick with AIDS and who moves in and out of the house depending on his health), as well as the two remaining grandchildren, ages 7 and 9. The 9-year-old has had a considerable number of health and educational problems, requiring weekly medical and school appointments. While Daphne has derived support from a self-help support group that she founded, she is the only caregiver in the household and receives limited caregiving assistance from outsiders. She is the only selective kin for these children, aside from their father, who is often unavailable or too sick to interact with them. Daphne must cope with her own health problems (e.g., arthritis, heart trouble), and frequently worries about what will happen to the children ifsomething should happen to her. However, to date, she has coped quite well, the children feel secure with her, and she has been able to provide a stable home for her grandchildren. There have been a number of articles written on the role of “older black women” in the HIV epidemic. In the present study there were three women who

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were at least 60 years old, who had raised their own children, and who were the primary caregivers for the next generation. Mary, the primary caregiver in house 7, is another example. Mary is a 47-year-old African-American woman who is currently caring for her three great-nieces and -nephews as well as one great-grandchild. Mary raised not only her own son, but also one of her sister’s children, Tina. She has since taken on the care of Tina’s three children, one ofwhom is HIV-infected. Tina had a history ofsubstance use and died ofAIDS. Mary is the only caregiver in the house. Although she has received some emotional support for herself from her exhusband, he is not involved in the care of the children. She has many medical problems of her own and is often overwhelmed and exhausted with the care of the children. Several of the children have serious learning and behavioral disabilities that get them in trouble at school and with the police. Mary is quite concerned about what will happen to them as she becomes increasingly medically fragile. Mary feels that there are no other potential caregivers in herfamily and that she is the only option for these children. Thus, at the time of the interview, there were no prospective caregivers, which was stressful for Mary. Most of Mary’s blood relatives had died, were too old to care for the children, or had substance-use problems. Mary was concerned that the children would end up in the foster care system. The last group of selective kin configurations consist of families in which the HIV-infected children are living in foster care or have been adopted (e.g., houses 10-12). While we have only depicted three cases in Figure 1, there were 8 such selective kin groups in the study sample of 25 (32%). While the relationship of primary caregivers to HIV-infected children was that of a foster care or adoptive parent, within each of these kinship groups, there were multiple types of blood and nonblood relationships among the members. House 10 is a typical example: In this household, the primary caregiver for the HIV-infected child is an African-American foster care mother; Rose. She is caring not only for an HIVinfectedfoster child, Marcus (whom she plans to adopt), but also for several of her own grandchildren. Her son, Jackson, has had several relationships with drugusing women that have resulted in two prenatally drug-exposed children, one of whom is autistic. Jackson is sometimes involved in his children’s care, although he moves in and out of the house and is not always available for sharing child-care responsibilities. At the time that Jackson’s children were born, Rose was caringfor Marcus and two other HIV-infected foster care children whom she was close to. Rose reported to us that the Child Welfare Administration told her that she had to become the primary caregiver of her two blood grandchildren ifshe wanted to keep the threefoster care children who were not related to her by blood. Forced to make this choice, Rose opted to bring her son’s two children into the household. Rose’s adult daughter; Mary, also lives in the house with her infant son. Mary does provide caregiving assistance to Rose and treats Marcus as if he were a younger brothel: Thus, the selective kin in this system consists of foster care relations, blood

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relations, and legal guardianship relations. One year after the interview, Rose had successfully adopted Marcus. The family lives in a project and often has to cope with violence and drug related crimes. The two otherfoster care HIV-infected boys in this household died of AIDS prior to the study interview. In addition to grandmothers and great-grandmothers, gay couples have also responded to the devastating toll of AIDS on families by taking on the care of HIVinfected children. The selective kin represented in house 12 is an example of this type of caregiving arrangement. Roberto and George were two gay men in a long-term committed relationship. They decided to adopt Henry, who was HIV-infected. Shortly after the adoption went through, they took in two more foster care children (two brothers, one HIV-infected, one a seroreverter*). Unfortunately, at the time of the foster care placement, they learned that George had AIDS. Two years later he died and Roberto found out that he also was HIV-infected. For 2 years, Roberto cared for the children as their primary caregiver, managing all of their medical appointments as well as his own. He wasfortunate to have very supportive blood relatives who took on substantial caregiving roles. His mother cooked dinner for the children several nights a week and often picked them up from school (allowing him to work and attend his medical appointments). His brother and sister-in-law had a pool, lived in the suburbs, and took care of the children most weekends during the summer. It is Roberto’s plan that the children will move in with his brother and sister-in-law, Susie, when he dies. It is Susie who will be largely responsiblefor the care ofthe children and who now takes primary care of them on weekends. Roberto is trying to adopt the twofoster care boys so that they will receive benefits when he dies. Henry, who is now 8 years old, has experienced numerous changes in living arrangements. He lived in two foster care homes (at least one of which was abusive) prior to his adoption by Roberto and George. He has experienced the death of one adoptive father and may experience the death of a second father or foster brothel: In addition, he may experience at least one more change in living arrangements if Roberto dies before he does. Selective Kin Configurations, Stress, and Coping In a prior publication, Mellins and Ehrhardt (1994b) described in detail the stressful events experienced by the HIV-affected families in this study. Briefly, the caregiver and child interviews contained open-ended questions about stressful *Seroreverter is the term used to describe children who are born to HIV-infected mothers but, who never acquire the virus. Although less than a third of infants born to HIV-infected mothers will be HIVinfected themselves, virtually all infants born to these women will initially show a positive HIV antibody test at birth because they have passively acquired maternal HIV antibodies. However, once they have lost the maternal antibodies, at 15-18months, approximately 70-80%of these infants will be found not to have acquired the virus, and therefore will test HIV-negative.

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experiences encountered, use of coping strategies, social support, and psychological and social needs. Content analysis was performed on the transcripts of interviews using a coding scheme developed by the authors. The goal was to identify important themes for this sample. An interrater agreement of 80-90% was achieved for codes in each area (stress, coping, and social support). Stress and different coping resources clearly can have an impact on the structure of selective kin and vice versa. In this section, we will highlight some of the stressors that were differentially experienced by caregivers in different types of selective kin situations. Finances

First, it is important to note that many participants identified many stressful experiences that were not directly related to HIV, but rather to inner-city living and being a parent, such as basic living needs, inner-city violence, substance use, job stress, and meeting children’s educational needs. Single HIV-infected mothers and grandmothers reported more financial needs for their kin than did other types of caregivers and HIV-infected mothers reported more stressors related to poor housing (e.g., living in dangerous projects or “slums,” inadequate space, poor heating and plumbing systems). Furthermore, while most of the participants were economically deprived, foster care and adoptive caregivers reported larger yearly incomes (median = $30,000-40,000) than either relatives (median = $15,00020,000) or birth parents (median = $10,000-15,000). On average, five people had to live on this income. The disparity in financial resources between birth mothers and foster care parents is largely related to the fact that in New York State, foster care parents receive considerable subsidization for the care of HIV-infected children (on average, $1400 a month per child). Birth mothers and relatives who are legal guardians (as opposed to foster kinship parents) do not receive additional funding for the care of their children, other than a small addition to public assistance (if they are on public assistance). Moreover, while mothers and children with AIDS are eligible for Social Security Income (SSI), it is not available to those who are HIV-infected but asymptomatic. Also, in New York State, blood relatives who take on the care of children through the foster care system are eligible for subsidization by the state. However, to join the foster care system, they must give up legal rights to the child. Therefore, if a relative is going to gain custody of a child, they must often choose between legal guardianship—which gives them full legal rights and decision-making capabilities, but no financial support—and foster care—which provides financial support, but no legal rights. The child becomes the legal custodian of the State (e.g., Child Welfare Administration). For families who are economically disadvantaged, the financial burden of these children can be substantial, particularly if the children have emotional, behavioral, learning and/or health problems that require

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intervention. These needs may make foster care an attractive option. On the other hand, the children may require medical decisions (e.g., different treatment options, whether or not to resuscitate a child with end-stage AIDS). Relatives who are foster care parents give up their right to make these decisions, which cannot be finalized without the approval of the Child Welfare Administration. Furthermore, if foster care parents want to move and leave the state with the children, they must obtain permission from the foster care agency. HIV-Related Stress

As expected, the most frequently reported stressors were related to HIV disease and its impact on the selective kin. HIV-infected parents, in particular, discussed the stress of having to manage multiple health care appointments in different locations for multiple family members. The burden and competing demands of caring for ill members and healthy siblings often require support and assistance for primary caregivers. For some families, accessing outside support services such as homecare is not an acceptable option. Some women in this study reported feeling that they “should be able to handle the situation” from within the family, even if “family” only refers to one caregiver and multiple children. Almost every caregiver had experienced multiple deaths, including deaths of young children, parents, and adult children to AIDS. Many caregivers had also lost selective kin to drugs, inner-city violence, and other illnesses such as cancer. HIVinfected parents and relatives in particular described the pain and stress of losses related to AIDS, as well as the toll it took on the family. In this sample, three birth mothers with whom children were living had died of AIDS, as well as one father and five siblings. Relatives, such as grandmothers, frequently had to simultaneously face the losses of adult children and grandchildren to AIDS, as well as take on the custody of other uninfected or infected grandchildren. Bereavement was a major psychosocial stressor for these families. The issue of disclosure was often reported, particularly by HIV-infected mothers. Secrecy and ostracism were reported most frequently by birth parents. Many caregivers discussed not only the stigma of HIV and fears of ostracism as reasons for secrets, but also concerns about disclosure of a child’s or parent’s HIV status to children in the family. For some HIV-infected parents, disclosure would reveal histories of drug use or risky sexual behavior that they did not want to reveal to their children. Furthermore, in this sample of HIV-infected children, 71% did not know their diagnosis. Alternatively, all of the siblings who we interviewed were aware of HIV in the family and as a result had to carry the burden of secrecy. Impact of HIV on Kin Relationships

Many caregivers discussed alienation from extended kin related to secrecy, conflict, and ostracism because of AIDS and associated risk behaviors (e.g.,

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substance use histories, sexual behavior). Often kin do not express anger because of HIV disease, but rather because of the associated risk behaviors as well as the impact of these behaviors on children and other relatives. For example, teenage siblings must often confront their parent’s substance use or sexual behavior that they see as dividing the family or destroying it. They are often full of rage, acting out their anger. These uninfected siblings also reported to us that they had fewer resources for social support and “no one to talk to about HIV.” While there are aspects of HIV that divide kin, there are also aspects that can bring them closer together. Some caregivers received considerable support from their selective kin. In many of the selective kin units, particularly those in which mothers had to worry about their own death as well as that of a child, fears of separation and loss led to increased closeness, strong bonding, clinging behavior in children, and difficulty separating from family members even for short periods of time. Kin relationships are also important in terms of mitigating the impact of HIV disease on caregivers and children. In a recent study we found that family cohesion was associated with fewer symptoms of distress and demoralization in HIVinfected mothers with pre-school-age children. Furthermore, family communication was very important to the HIV-infected mothers (Mellins & Ehrhardt, 1995).

Coping

In this sample of primarily female caregivers, the predominant modes of coping involved use of religiosity, beliefs in God, and self-reliance. Eighty-nine percent of the female caregivers reported that they derived the most support from their belief in God. They discussed the importance of their faith and spirituality in helping them cope with HIV, even if they did not belong to a formalized religion. They turned to God for emotional support as well as guidance in making decisions. A large majority also reported that they primarily relied on themselves (as opposed to other people) for coping with HIV and related stress. Reasons for selfreliance ranged from fears of ostracism, to beliefs that “I should be able to handle this,” to “there is no one else who can help me.” HIV-infected mothers in particular reported that they had few resources for financial and social support. Boyd-Franklin, Aleman, Jean-Gilles, and Lewis (1995) discuss the myth that grandmothers and other extended family caregivers are “towers of strength.” While they report that the myth is accurate, they also acknowledge that this image can prevent these women from calling for help when the burden of caregiving becomes too great. Until recently, very little attention has been paid to the psychosocial needs of these female caregivers. It is important to acknowledge that many of the female caregivers reported that they and their children were coping effectively with the illness, which is remarkable given the number of stressors in their lives. For example, in spite of

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limited resources, many women were able to provide housing, food, clothing, health care, and recreational activities for their children.

FACTORS INFLUENCING ‘SELECTIVE KIN” STRUCTURES While we have used the term “selective kin” to describe the structure of families coping with pediatric HIV disease, this study is a microcosm for a larger phenomenon of reconfiguration of living arrangements in the United States at the present time. As noted earlier, only 23% of the families in the United States in 1990 consisted of a married couple and their children, Other living arrangements include divorcees, nonmarital cohabitation, group living arrangements, single-parent households, children living with grandparents or other relatives, and so on. The census also indicates increased ethnic diversity and migration to and from other countries, such that families may be caught in an intermediate stage of migration requiring some of the same kinds of flexibility in household arrangements that is noted in HIV-affected families. In this section, we will highlight some of the other factors that may influence family structure or, as we define it, selective kin. Ethnicity As summarized by McGoldrick (1982), different ethnic groups vary in their definition of family. While the dominant American definition focuses on the nuclear family, other cultures have focused on the extended family including aunts, uncles, cousins, and others (e.g., Italian and Puerto Rican families) and more informal networks that may include “nonblood” relatives (e.g., African-American families). The large majority of families affected by maternal and pediatric HIV disease in the United States are not part of what is considered to be the dominant American culture, but rather are African-American and Latino families, who are socioeconomically disadvantaged. Thus, it is important to consider some of the research on ethnicity and family structure. There have been a large number of articles written about the AfricanAmerican family (e.g., Boyd-Franklin, 1989; Hines, 1988; Scott & Black, 1989). The work of Nancy Boyd-Franklin has emphasized the importance of black cultural patterns in determining what is “family.” The forms we traditionally use to identify family members may not be sufficient. She recommends that instead of simply asking “Who is in your family?,” investigators inquire as to who is in the household, who provides care, who visits regularly, who stays over, and so on. In defining the selective kin of HIV-infected children, we made an attempt to address these questions with caregivers. Boyd-Franklin has also emphasized the importance of extended family and nonblood relatives in African-American families prior to HIV disease and, thus, their significant role in caring for children whose parents have died of AIDS.

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There is a more limited literature on Latino families (e.g., Szapocznik & Kurtines, 1993; Garcia-Preto, 1982). Garcia-keto (1982) points out that “family” in Puerto Rican culture refers to not only those related by blood and marriage. “Family” includes godparents, informally and formally adopted children, and “coparents” (compadres). What is important to remember when looking at Latino families is that there is not one prototype of a Latino family. Latino families come from a number of different countries, including, but not limited to, the Dominican Republic, Puerto Rico, Spain, Cuba, and Central and South American countries. Each of these different countries as well as issues of acculturation may contribute to the diversity of Latino families. McGoldrick (1982) notes that ethnicity can affect the family’s view of children and of responsibility for care. In other cultures, it is acceptable for children to be transferred from one “nuclear” family to another, within an extended family system, when there is a crisis (Garcia-keto, 1982). This would result in a more flexible, dynamic conceptualization of family for the children. Other work has demonstrated that ethnicity can have an impact on the families’ attitudes toward illness thereby affecting who becomes responsible for care. In the present study, many of the African-American grandmothers and great-grandmothers who grew up in southern states reported that as children they were responsible for the care of a large number of siblings. This job of “caregiver” became part of their self-definition and their decisions to take on the caregiving responsibilities for their grandchildren, great-grandchildren, nieces and nephews, as well as children who were nonblood relatives, affected by AIDS. Poverty In addition to ethnicity, finances can influence family structure. In many studies the number of single mothers may be overrepresented if what defines “single parent status” is “marriage status.” Some mothers, particularly if they are receiving Aid to Families with Dependent Children (AFDC), are reluctant to reveal boyfriends or children’s fathers for fear of losing income from welfare. There may be fathers who contribute a small amount to the household or who provide substantial care for children. However, their identity could compromise the family’s financial situation and thus may be omitted from descriptions of family and who lives in the household (Boyd-Franklin, 1989). Boyd-Franklin (1989) points out that the picture of a given family presenting for therapy may change over time as the family begins to trust the therapist. Thus, the number of men identified in the present study as caregivers may have been underrepresented, given that we only met with women on one occasion and may not have acquired such trust. Poverty can also disrupt family functioning. As resources become less available, maladaptive coping responses may increase, resulting in the breakup of the

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family system (Hines, 1988). Alternatively, adult children and their children may move in with grandparents or other relatives in order to provide adequate housing and care. While such cohabitation may bring a family closer together, it can also result in considerable tension and infantalizing of adult children who are now parents. Substance Use As noted, there is a strong linkage between the HIV and substance use epidemics in women and children. Forty-seven percent of women with AIDS have injection drug use (IDU) as their primary risk factor for HIV transmission (CDC, 1996). Corresponding with this number, 37% of children with AIDS are born to IDU women and an additional 17% of pediatric AIDS cases are born to the partners of drug-using men (CDC, 1996). Moreover, there is evidence that a large percentage of HIV-infected children are born to women who used crack cocaine during pregnancy. As a result, a substantial number of HIV-infected children were prenatally drug exposed or were exposed to parental drug use during early childhood. Parental substance use can have a significant impact on family structure. Many prenatally drug-exposed children are removed from the homes of their birth parents and placed in foster care or in the care of relatives. Furthermore, many of the children affected by HIV are exposed to parental substance use postnatally (Mellins & Ehrhardt, 1995). As a result, they may have experienced several temporary placements with other relatives, neighbors, or foster care parents when their parents were actively using drugs. Homosexuality In the present sample, there was one selective kin system in which children were living with a gay parent (in this case a male foster parent). This system is not a rare one. There are increasing numbers of lesbian and gay birth parents raising their own birth children and there are increasing numbers of gay and lesbian couples who are choosing to be foster parents or to adopt children. According to Bell and Weinberg (1978), 20% of gay men have fathered a child or children and 40% of lesbians have given birth to children. Fowlkes (1994) has noted that lesbians are increasingly “embracing parenting” holding the belief that two women together can provide more flexible and mutual models of parenting. The increasing acceptance of homosexuality is affecting the rights of gay partners to housing and economic benefits as well as to caring for children. For example, San Francisco and New York City have passed domestic partnership laws allowing unmarried gay couples to register publicly as domestic partners, thereby obtaining benefits and increasing their acceptance as a family. Changes in domestic partner legislation will help achieve equality between homosexual and heterosexual fam-

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ily households (Green & Bozett, 1991), and therefore the rights of gays and lesbians to adopt and/or raise children. However, in spite of some recent positive changes in policies and the fact that research has failed to find differences in rates of psychopathology between the children of gay and lesbian parents and the children of heterosexual parents (Golombok, Spencer, & Rutter, 1983; Kirkpatrick, Smith, & Roy, 1981), there is still considerable stigma attached to gay parenting. There have been several recent court decisions that have discriminated against gay and lesbian parents (Rivera, 1991). Custody is often refused to lesbian and gay parents because of beliefs that they won’t be effective parents, their children will have difficult relationships with peers, and/or their children will develop emotional, behavioral, and genderidentity problems (Kleber, Howell, & Tibbits-Kleber, 1986). Changes in the definition of family to include same gender parents would help reduce the stigma associated with gay parenting and more accurately reflect the full range of living and care situations. HIV Orphans It has been estimated using a mathematical model based on AIDS-related deaths and fertility that over 45,000 children and adolescents will lose their mother to AIDS by the end of 1995 (Michaels & Levine, 1992). The vast majority will come from poor communities of ethnic minority status. By the year 2000 this number should grow to 72,000-125,000,35,000 of whom will live in New York City. Many of these children will have been raised by single mothers, creating a new epidemic of orphans and a need for alternative caregivers. This epidemic has resulted in several policy changes in New York, such as the development of early permanency planning for parents with a terminal illness such as HIV. Parents can designate legal guardians for the care of their children prior to their death (e.g., Standby Guardianship). Unfortunately, for many HIV-infected parents, finding an appropriate caregiver is not always an easy task. Resources of potential caregivers within the family may be depleted given that HIV often affects multiple generations and/or many HIV-infected parents are alienated from family members because of histories of drug use. Furthermore, concerns about ostracism lead many HIV-infected parents to keep their diagnosis a secret, thereby increasing social isolation and making it difficult for them to plan for their children’s future care. In a recent study of HIV-infected mothers, we found that mothers who have trouble with disclosure experience difficulty making permanency plans for their children (Mellins & Ehrhardt, 1995). As more women and children become HIV-infected, it is imperative that legal services address parents’ need to identify future caregivers and establish plans that are legally binding. Furthermore, when parents are still healthy, it is important that they are able to establish permanency plans for their children’s future care without

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having to give up legal rights to the children (e.g., Standby Guardianship laws). Establishing permanency plans while a parent is still healthy can help reduce stress for both parents and children, provide some semblance of family stability, and provide a way to support the child during the family transition.

DISCUSSION In the present chapter we have introduced the concept of selective kin in order to address the changing dynamics and structure of the American family. Justification for the need of a new term and conceptualization is threefold. First, the structure of the American family has changed drastically such that the “nuclear family” is no longer the predominant configuration. Second, in the sample of 25 families affected by HIV disease described in this chapter, not only were there no cases of a “nuclear family,” but there were no two family structures that were identical. Third, researchers and family therapists have increasingly called for alternative definitions of family that include the many different types of living and care arrangements that characterize the general population (e.g., Boyd-Franklin, 1989) and more specifically the families affected by AIDS (Cohen, 1994; Levine, 1990; Mellins & Ehrhardt, 1994a). For example, Cohen (1994) in a discussion of families affected by HIV emphasized the need to expand the definition of families to include: (1) families of origin or of choice, (2) single-parent families, (3) femaleheaded families, (4) multigenerational families, (5) stepparents and/or -children, (6) half siblings, (7) adoptive and/or foster care families that may or may not be kinship, and (8) families composed of some related and some not-related members. While some clinicians and researchers may be accepting alternative definitions and conceptualizations of family, there have been few attempts to document the range of possible family structures and to propose alternative definitions. In this chapter, we have presented an alternative term for family, “selective kin,” and a new way of illustrating the “selective kin” of HIV-infected children. Our definition of selective kin is based on who provides care and support and who is considered to be family to the children. The term was chosen because it does not carry with it preconceived notions of what is “normal” and what is “abnormal.” It allows for blood and nonblood relatives to be included equally, as well as for changes over time in a nonpejorative manner. Families affected by HIV disease have presented an important context for developing the selective kin concept, since many of the variables that affect selective kin are present. These include positive or neutral influences (e.g., different cultural and ethnic conceptions of family and different sexual orientations of coparents), as well as factors that can negatively disrupt family structure (e.g., substance use, illness, and death). We believe that in order for research to adequately assess family functioning,

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the definition of family needs to be expanded to include a full range of living and caregiving situations. A diagnosis of pathology should not be based on whether or not the family structure is a nuclear one. Current political debates concerning single mothers and welfare and the rights of lesbian mothers and gay fathers to raise children are only two indications of the discrimination that is still encountered by people in nontraditional living and care situations. A second issue that we have highlighted in the study is the important role of women in maintaining the family in the context of the AIDS epidemic. Women are typically the primary heads of households, the primary caregivers of children, regardless of blood relations, and the primary source of emotional, physical, and monetary support of children. Women are also playing an important role as secondary caregivers, assisting with child care, medical appointments, school appointments, and support of primary caregivers. As a result, these women are at high risk for experiencing considerable stress, caregiver burden, and health and mental health problems of their own. Given their central role in the family, illness or death of the mother will have a significant impact on structure and emotional and physical well-being of the entire family system. We found that both HIV-infected mothers and HIV-negative grandmothers were concerned about what would happen to their children and families were something to happen to them. One implication of this research is that health and mental health services and financial resources are required that are tailored to meet the needs of these women and their children, and that help with family preservation. In spite of the predominance of women, we should not minimize the role of men. In 5 of 25 selective kin groups, there were five male primary caregivers, and in 4 cases, men were playing roles as secondary caregivers, supporting women and children. While there is clearly a need for services that support women in their roles as mothers and caregivers, these same services are needed for the men who play significant caregiving roles. Furthermore, policies are needed that do not penalize poor families when fathers are present in the household. Clearly, there are limitations to this research and to the categorization system. The present study examined the selective kin of children with HIV disease, focusing on who provides care and support to the child. Obviously this limits who is considered to be selective kin. If we had extended our conceptualization to include all those considered to be kin by the caregivers, regardless of their relationship to the HIV-infected child, the number of people would have increased substantially. Furthermore, there are families in which there are no children. Inclusion of these different situations would only increase the number of possible selective kin configurations and would further serve as proof of the need for a redefinition and reconceptualization of family. Because we have chosen to present selective kin in the context of HIV disease, we run the risk of putting too much focus on the impact of HIV disease on structure, undermining the multifaceted influences on family configurations. As

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we have tried to point out, there are many contextual influences on who is selected or considered to be kin (e.g., ethnicity, economic status, availability). HIV is just one out of many. As a result we believe the data are generalizable to families who are not coping with HIV disease. A second limitation is presented by the housing schema. We chose to look at family at one point in time. For many children the concept of selective kin is not static, but constantly changing, requiring a more complex system of representing the structure of selective kin than was possible. In several cases we attempted to depict this change (e.g., houses 2 and 5). However, in many other cases, the number of changes were too extensive and complicated to graphically represent in a two dimensional static picture. For example, one type of configuration that was present in the study sample but whose graphic schema was not included in Figure 1, represents selective kin in which children move back and forth between a birth mother and a relative or foster care parent because of the mother’s substance use or treatment. In the present study, there was one family in which an HIV-infected boy spent his first few years with his birth mother, the next few years with his maternal aunt (because of mother’s substance use and inpatient treatment), the following year with a foster care mother, and now is back living with his birth mother. Thus, there are three different groups of selective kin that this child would call “family.” When asked to draw a picture of his family, this child requested to draw three pictures. In spite of these limitations, we feel that this conceptualization and approach has research implications and highlights the needs of families affected by HIV, poverty, and substance use. There is a need for research on family functioning that examines selective kin and not just “nuclear family structures.” Such research would examine the impact of different configurations and the impact of changing selective kin on children’s functioning, and on the functioning of the primary caregivers, who are typically women. For example, as we noted, HIV-infected birth mothers experienced more economic stressors which can exacerbate their experience of other stressful events and the impact of stress on mental health. Extreme poverty can be associated with premature birth, poor nutrition, inadequate medical and health care, experience of crime, violence, poor education, unemployment, poor housing, and so forth (Sherwin & Boland, 1994). Many of the selective kin systems that were headed by single HIV-infected mothers reported more social isolation and fewer resources for financial and social support. Foster care and adoptive kin often had access to other types of respite and support through agencies and support groups for foster care parents. They also typically had higher annual incomes and thus experienced less economic stress (Mellins & Ehrhardt, 1994b). Clearly different kinds of selective kin systems have different needs that must be differentially addressed by health, mental health, and social service providers. This type of work also has implications for family research. For example, an

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expanded definition of family should result in the development of research instruments that are valid and reliable for alternative family configurations and for different ethnic and cultural groups. Development of these instruments would improve research on family functioning and its impact on health and mental health.

POLICY IMPLICATIONS While gay men as a community have been successful in advocating for research and clinical funding for HIV, women and children have been relatively ignored and are often sufficiently disenfranchised making it difficult for them to advocate for themselves (Sherwin & Boland, 1994). Since women and children have become the fastest growing groups of AIDS cases, it will be important for research and public policy to be so accorded. One of the most significant needs of women and children affected by HIV disease is family stabilization. By redefining family, improved recommendations could be made to address: eligibility criteria for benefits and other financial resources, access to services, adoption, foster care, and the legal role of caregivers helping family members with HIV. Custody and legal guardianship is one area that has been significantly affected by antiquated notions of family. For HIV-infected women, the future legal guardianship of their children is an extremely important concern. Levine (1990) provides a comprehensive discussion of many of the legal ramifications including the question of who gets future custody of children (e.g., biological relatives, foster care, orphanages). Alternative definitions of family that eliminate preconceived notions of what a “normal family” is and instead focus on what is in the best interests of women and children as well as other caregivers, may help HIV-infected mothers develop permanency plans with a wider range of options. For example, family courts often give preference to blood relatives over nonblood caregivers in custody decisions, even if a mother has requested that her children be placed with the nonblood caregiver, and even if the nonblood caregiver has played much more of a role in raising the children, functioning as a secondary caregiver. In some cases, the children have had little or no contact with the blood relative and are very attached to the nonblood caregiver. It can be seriously disruptive for a child to be faced with not only the loss of his or her mother, but also separation from this secondary caregiver. Redefining family might have an impact on how courts make decisions about such custody cases. A second concern is the issue of foster care versus legal guardianship. Relatives should not have to make the choice between financial assistance and legal rights when deciding to take care of children. This is clearly not always in the best interest of the family. Boyd-Franklin and Boland (1995) suggest that it might be important to change child care laws so as “to provide a more equitable financial allowance for extended family members who are supporting relatives’ children, particularly children with emotional, behavioral, learning and medical needs.”

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The overriding concern for the future provision of care to HIV-infected and HIV-affected children is looming large while the AIDS and drug epidemics are taking their toll on family composition and availability of potential caregivers. A more appropriate conceptualization of family structure such as selective kin may aid in realistic planning and policy decisions for care and support and may also be a useful step in eliminating discrimination and stigma based on racism, classism, and homophobia.

CONCLUSION In this chapter, we are proposing a new way of classifying family structure. Our classification schema, which we call “selective kin,” is based on an in-depth qualitative study of 25 families who are affected by HIV. It is our hope that a more appropriate and realistic approach to defining the variety of family constellations involved in the care of HIV-infected children will influence future research and policy determining legal, financial, health care, and permanency planning. In addition, the concept of selective kin may have important implications that go beyond HIV-affected families. Our society is currently in transition, and the concept of a nuclear family is outdated. Selective kin illustrates a range of caregiving units that are presently evolving. Such a new conceptualization may lead to the realistic assessment of the strengths and challenges that are presented by these different configurations and may help to foster tolerance for diversity and appropriate societal responses.

ACKNOWLEDGMENTS. This research was supported in part by center grant 5P50-MH43520 from NIMH/NIDA (P. I. Anke A. Ehrhardt, Ph.D.), training grant T32 MH19139 from NIMH (P. I. Zena Stein, M.D.), and a grant from the Aaron Diamond Foundation (P.I. Claude Ann Mellins, Ph.D.). The authors thank Dr. Ram Kairam, Dr. Stephen Nicholas, Dr. Jane Pitt, Kim Geromanos, and Andrea Jurgrau for their invaluable assistance. We also extend our gratitude to the children and caregivers who participated in this study.

REFERENCES Bell, A. P., & Weinberg, M. S. (1978). Homosexualities: A study of diversity among men and women. New York: Simon & Schuster. Boyd-Franklin, N. (1989). Black families in therapy: A multisystems approach. New York: Guilford Press. Boyd-Franklin, N., & Boland, M. G. (1995). Service deliverers and system issues. In N. Boyd-Franklin, G. 1. Steiner, & M. G. Boland (Eds.), Children, families, andHIV/AIDS (pp. 199-215).New York: Guilford Press.

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Boyd-Franklin, N., del C. Aleman, J., Jean-Gilles, M. M., & Lewis, S. Y. (1995). Cultural sensitivity and competence: African American, Latino, and Haitian families with HIV/AIDS. In N. BoydFranklin, G. L. Steiner, & M. G. Boland (Eds.), Children, families, and HIV/AIDS (pp. 53-77). New York: Guilford Press. Centers for Disease Control and Prevention. (1994). HIV/AIDS Surveillance report. Cohen, F. L. (1994). Research on families and pediatric human immunodeficiency virus disease. Journal of Developmental and Behavioral Pediatrics (Supplement), 15, S34-S42. Conner, E., Sperling, R. S., Gelber, R., et al. (1994). Reduction of maternal-infanttransmission of human-immunodeficiency virus type 1 with zidovudine treatment. New England Journal of Medicine, 331, 1173-1180. Fowlkes, M. R. (1994). Single worlds and homosexual lifestyles: Patterns of sexuality and intimacy. In A. S. Rossi (Ed.), Sexuality across the life course (pp. 151-184).Chicago: University of Chicago Press. Garcia-Preto, N. (1982). Puerto Rican Families. In M. McGoldrick, J. K. Pearce, & J. Giordano (Eds.), Ethnicity and family therapy (pp. 164-186).New York: Guilford Press. Golombok, S., Spencer, A., & Rutter, M. (1983). Children in lesbian and single-parent households: Psychosexual and psychiatric appraisal. Journal of Child Psychology and Psychiatry, 24, 551. Green, G. D., & Bozett, F. W. (1991). Lesbian mothers and gay fathers. In J. C. Gonsiorek & J. D. Weinrich (Eds.), Homosexuality: Research implications for public policy (pp. 197-214).Beverly Hills: Sage Publications. Gurbino, M. D., Hoez-Sampelayo, T., Arana, J. L., Moreno, M., & Escudero, B. (1992, July). Pediatric HIV-infection: A family and social major problem. Who takes care of the children? Paper presented at the VIII International Conference on AIDS. Abstract No. PuB 7224. Heslin, P. (1993, June). When children are the only survivors: Parents with AIDS. Paper presented at the IX International Conference on AIDS. Abstract No. PO-DO3-3496. Hines, P. (1988). The family life cycle of poor black families. In B. Carter & M. McGoldrick (Eds.), The changing family cycle: framework for family therapy (2nd ed.) (pp. 515-544).New York: Gardner Press. Kirkpatrick, M., Smith, C., & Roy, R. (1981). Lesbian mothers and their children. American Journal of Orthopsychiatry, 51, 545-551. Kleber, D. J., Howell, R. J., & Tibbits-Kleber, A. L. (1986). The impact of parental homosexuality in child custody cases: A review of the literature. Bulletin of the American Academy of Psychiatry and Law, 14, 81-87. Levine, C. (1990). AIDS and changing concepts of family. The Milbank Quarterly, 68, 33-58. McGoldrick, M. (1982). Ethnicity and family therapy. In M. McGoldrick, J. K. Pearce, & J. Giordano (Eds.), Ethnicity and family therapy (pp. 3-30).New York: Guilford Press. Mellins, C. A., & Ehrhardt, A. A. (1994a, July). The impact of HIV on women and their families: Insights from studies of inner-city mothers and children. Invited paper presented at the 2nd annual conference of the NIMH on the Role of Families in Preventing and Adapting to HIV-infection and AIDS, Virginia. Mellins, C. A., & Ehrhardt, A. A. (1994b). Families affected by pediatric AIDS: Sources of stress and coping. Journal of Developmental and Behavioral Pediatrics (Supplement), 15, S54-S60. Mellins, C. A., & Ehrhardt, A. A. (1995, February). Stress, social support and psychosocial functioning in HIV-infected mothers and children. Paper presented at the HIV Infection and Women’s Conference, Washington, DC. 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, 3456-3461. New York State Department of Health. (1992). AIDS in New York State. Albany. Oxtoby, M. J. (1994). Vertically acquired HIV infection in the United States. In P. A. Pizzo & C. M. Wilfert (Eds.), Pediatric AIDS: The challenge of HIV infection in infants, children, and adolescents (2nd ed.) (pp. 3-20).Baltimore: Williams & Wilkins.

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Rivera, R. R. (1991). Sexual orientation and the law. In J. C. Gonsiorek & J. D. Weinrich (Eds.), Homosexuality: Research implications for public policy (pp. 81-100). Beverly Hills: Sage Publications. Scott, J. W., & Black, A. (1989). Deep structures ofAfrican American family life: Female and male kin networks. Western Journal of Black Studies, 13, 17-24. Sherwin, L. N., & Boland, M. (1994). Overview of psychosocial research concerning pediatric human immunodeficiency virus infection. Journal of Developmental and Behavioral Pediatrics (Supplement), 15, S5-S11. Szapocznik J., & Kurtines, W. (1993). Family psychology and cultural diversity: Opportunities for theory, research, and application. American Psychologist, 48, 400-407. U.S. Bureau of the Census. (1990).

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Clinical and Psychosocial Issues of Women with HIV/AIDS Stacy N. Broun ... I am promises withering in the sun. My dream seeds are not my own, they were stolen, Gone away, stolen. No justice will be done. No thine sweet kingdom come. No Holy, Holy, Holy, now not and never more to be Sweet, See? Into retirement I step, the cord of replication cut, First cry of life refused. They were stolen, gone away, stolen. I teeter, pause, and Then proceed. I shake the tears from out of my eyes. I enter down the long dark hall. Shadows from the valley of death have been imported. And Yeah ... I shall walk. An excerpt from No Thine Sweet Kingdom Come by Miranda LaFaye, a woman living with AIDS (Rudd & Taylor, 1992)

When asked to contribute to this volume on HIV and women, I was a little reticent at first. I am not an academician or researcher. I do not compute statistics or interpret their results. I am a clinical psychologist who has been working with men, women, children, and families affected by HIV/AIDS for the past 10 years. My practice is like most, except that the patients I treat who have AIDS enter treatment because of difficulties including their illness. Their termination from treatment is usually as a result of death. Most psychologists have IQ and personality testing materials in their offices. While I have those, I also have funeral planning kits and price lists for different forms of burial and cremation. My office looks like any other, except I always have a blanket handy for patients experiencing chills or fever. There is also an unobtrusive hook in my wall for patients to hang their IV STACY N. BROUN

•

3609 Cedar Springs Road, Dallas, TX 75219.

Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 151

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drugs. So while I cannot offer you research on AIDS and women, I do hope to offer you something equally as important. I hope to put faces to those numbers and their caretakers you are reading about in other chapters. I hope to touch you (as I have been) with the courage of these persons I have seen. One of my colleagues, Barbara Cambridge, M.D., starts her lectures with the comment, “I do not work with AIDS. I work with women who have AIDS.” Like Mary Fisher and Elizabeth Glaser, women with AIDS often do not look sick. They drive carpools, they shop for groceries, they watch soap operas, they work as lawyers, secretaries, and doctors, they are our sisters, mothers, aunts, and grandmothers—they are us. For years now, AIDS has been perceived as a gay man’s disease, the myth being that women did not get AIDS. The truth is that the first Westerner recorded to have died of AIDS was a woman, Dr. Grethe Rask, who was a physician in Zaire and contracted the virus there. Officially her death was listed as Pneumocystis carinii pneumonia but the fact is she died of AIDS (Shilts, 1988). As of 1993, women constituted 11% of the U.S. cases of HIV and are among the “fastest-growing category of people with AIDS in this country” (APA, 1993). Among those infected, 56% are African American, 21% are Latina, 22% are Caucasian, and 1% are classified as other (Asian, Pacific Islanders, American Indians, and Alaskan natives). The clearly disproportionate numbers of minority women continue to increase at a higher rate than for Caucasian women (APA, 1993); more will be written about that later on. I have seen this same phenomenon in my own practice: my first two female patients with AIDS were infected by transfusion and a needle stick. In the past 2 years, however, every woman I have seen who was infected acquired the virus through heterosexual sex.

SAFE-SEX BEHAVIOR FOR WOMEN While it is clear that it is much harder to transmit HIV between women who are having unprotected sex than it is to transmit it while shooting drugs or during unprotected sex with men, there is reason to believe that the virus can be transmitted through vaginal secretions in high enough concentrations to be infectious over time (especially if there are co-existing factors such as HPV, herpes or yeast infections, or if menstrual blood is exchanged). Hence, the use of dental dams and latex gloves is as essential for safe sex among lesbian women who are infected as condoms are for heterosexual men. Another interesting, yet terribly sad phenomenon among women with AIDS is the stigma they feel about themselves, and the same stigma the public feels about them. This stigma could actually keep women from protecting themselves sexually. This was illustrated dramatically to me in a training workshop I participated in

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sponsored by the American Psychological Associations’ HIV Office on Psychology Education (Project HOPE). This workshop involved approximately 30 female mental health professionals of all ages, races, sexual orientations, and backgrounds. During the exercise we were asked to respond to four questions: 1. 2. 3. 4.

Women Women Women Women

who who who who

transmit HIV to children are ... transmit HIV to women are ... transmit HIV to men are ... are HIV infected are ...

The respondents were asked to say what first came to mind as they answered the questions. In response to question #1, people answered with “murderous,” “killers,” “irresponsible,” “unfit to be mothers,” and the like. To question #2, responses included “queer,” “dykes,” and “promiscuous.” To #3, typical answers were “are going to die,” “promiscuous,” and “stupid for not being responsible.” If these responses were those of trained mental health professionals who were attending a workshop because they worked with HIV-infected women, imagine how the general public feels. Feelings of shame and embarrassment are common for women infected with HIV. While these may be experienced by some men, it seems that women have introjected societal views and feel ashamed of their status. One subset of women for which this is particularly true is middle- to uppermiddle-class Caucasian women. Despite how they were infected, many feel great shame, guilt, and loneliness. Most of these women have worked and have insurance. Imagine how it must feel to go to your doctor, an HIV specialist, and be the only woman there. This tends to push these women back further into the HIV closet, feeling that they should not have a “gay man’s disease.” What is not known is the effect these feelings of shame and fear of rejection have on HIV-impacted women. We can hypothesize that they probably keep the women more isolated and less trustful (Bor & Elford, 1994). Oddly enough, it is these women who tend to be discriminated against: they make too much money for government-funded programs, yet they still face the very real issues of isolation and lack of specialized medical treatment.

LESBIANS CAN GET AIDS? “Do lesbians get HIV disease? The answer is yes, but for some reason, this fact has been buried beneath data stemming from research set up explicitly to discount this fact. As a result, lesbians with HIV disease have been vilified and belittled in many lesbian communities and disbelieved by many health care providers’’ ( Focus, 1994b). Again, lesbian women are equally at risk as others whenever bodily fluids are exchanged. Early studies of lesbian transmission seemed to be flawed in design ( Focus, 1994b). Recent studies, such as the Lesbian

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AIDS Project (KAP), had contact with 200 HIV-infected women; these were women who only had sex with other women and were not in additional transmission categories (i.e., IV drug use or transfusion). At the San Francisco Department of Public Health, a study of 498 lesbian and bisexual women found a seroprevalence rate three times the rate for men in San Francisco: 1.2% overall; 2.8% for bisexual women and 0.9% for lesbians (Lemp et al., 1993).

DENIAL ABOUT WOMEN AND AIDS There continues to be a great deal of denial in the general public that women can get AIDS, not just among laypersons, but professionals as well. One of my female patients was advised three times by three different doctors that she did not need to be tested for AIDS. This was when she and her husband married, then when they had trouble conceiving a child, and lastly, when the patient got pregnant. Again, the stigma of AIDS raises its ugly head—it can’t happen to a “nice girl” who comes from an upper-middle-class background. It was not until their infant daughter got sick that the pediatrician realized the child was HIV-positive. When the mother was tested, her CD4 count was under 200. She had probably been infected for 8-10years, but because of the myth surrounding women and HIV, she hadn’t known. When she learned her HIV status, she remembered having unprotected sex 8 years before and assumes that is how the virus was contracted. The myth is that women do not get AIDS. The facts are many women are already infected and more are testing positive everyday. Women get AIDS and women die of AIDS.

CULTURAL AND ETHNOSPECIFIC FACTORS Cultural and ethnospecific factors notwithstanding, we as clinicians have to be most consciously aware of the psychosocial issues of our patients with AIDS. Unlike the gay male culture, women who are infected tend to be involved in the mainstream of society. HIV disease among women in the United States takes place first in a social context, i.e., race, culture, ethnicity, financial status, marital status, number of dependents, and so forth (Kline, Kline, &Oken, 1992). AIDS occurs in a cultural context. Roles for women are culturally scripted and affect the experience of women with HIV. Psychologists (and others) must become aware of what it means to be a female in her culture and especially an infected female in her culture, community, and family (APA, 1993). Fortunately, women are willing to change their behavior (i.e., become more assertive about condom use) if given the opportunity to learn the skills. In the book Women and HIV/AIDS (1992), by Marge Berer with Sunandra Ray, examples of women-led

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support groups across the world demonstrate women’s willingness to change, and in doing so, protecting the lives of their children and themselves. While I have a number of patients who will practice unsafe sex with their infected partner, that carries risk factors also. Certain viruses (e.g., CMV) can be passed as well as more virulent strains of HIV. Furthermore, some women will simply not insist on a condom; this is especially true in minority cultures (Mays & Cochran, 1988). Also, another whole “species” believes they are immortal and that nothing will hurt them—this group is adolescents. One 14-year-old girl was shocked to learn that performing fellatio without a condom could give her AIDS. She responded appropriately, “Gross!”

WOMEN AS CAREGIVERS For many women, they are the caretakers in their families. It is difficult to give up this role even though the woman herself may be sick. In my own experience I have had patients who would cook dinner for their husbands even though they had neither the strength nor the energy to eat. Furthermore, most women tend to see themselves as dependent on their male partners or families. “Women living with HIV in the community will usually bear the responsibility for child care, housekeeping, health and social work appointments, and their own illness as well as the illness of their partner, possibly children and other family members. Often their own needs are the least well met” (Berry, Morrison, & McLachlan, 1992). It has been my experience that women with HIV are reluctant to give up their role as the family caretaker and nurturer. One woman who was HIV-positive refused to go to the doctor even though her husband was dying of AIDS. She knew the importance of early intervention, yet felt like she needed to take care of him rather than herself as “she was just going to die from this disease too.” Women with HIV-infected children present a particularly tough dilemma. Most of the mothers I have worked with express feelings of having “failed” as a mother because they could not protect their child from the horrors of this illness. They feel guilty for not being the mother they wish they could be. One woman expressed her pain by saying that “a mother should be able to protect her child ... not only can I not do that, I have killed him simply by bringing him into the world.” For those families who feel they must keep their HIV infection a secret (lest they be excluded or discriminated against), they must explain to their children that if they bleed while playing with friends, no one should touch their blood. Imagine how heavy a burden it must be to not only try to protect your child, but also to protect those around him or her. Even if the family’s relationship with the community and extended family is one of openness and acceptance, a mother will battle with her own feelings of anxiety, depression, and sadness over her inability to truly be a mother to her

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family. Often this will produce a significant degree of depression. One mother I saw came in one day and challenged me to “give her one good reason to live.” She was tired of fighting the illness and just wanted to go to bed. We decided that wanting to see her son in his Halloween costume was good enough for now. Women, by their nature, are caretakers. It is very difficult for them to give up that job in order to take care of themselves. In my opinion, a therapist’s main goal is to initially empower these women to care for themselves as well as their families, by using outside support, AIDS service agencies, support groups, and the like. Women must realize they are not alone with this disease. Our second and most important task is to be with these women, hold their hands, cry with them as they bury a child or husband. Don’t be afraid to let them need you.

TREATMENT GOALS Even more specifically, a woman’s experience of being infected is also tempered by her individual psychological makeup. This would include issues such as premorbid mental health, sexual orientation, substance abuse, self-esteem, religion/spiritual beliefs, support from family and others, and so on. It is at this point that the clinician becomes an important part of the treatment team. In my work with women, the greatest challenge, yet the one that reaps the most benefit, is empowering women to become activists for their own health care. My goal is not that they become any specific kind of activist, but that they become active, not passive participants in a medical community which may (or may not) treat the “squeaky wheels” first. At times this push toward activism is quite difficult. It may be defined as simply disclosing to others their HIV-positive status. Needless to say there is a great fear there, given the prejudices I spoke of earlier. Helping patients to find appropriate persons to tell is important. In one case, an HIV-infected (by needle stick) woman had also been an incest survivor. Helping her see that the needle stick was not a reenactment of earlier destructive bodily intrusions by the perpetuation of her abuse was imperative. A needle stick did not constitute self-abuse. There are times when the opposite extreme occurs, i.e., when a woman becomes so identified with her HIV status that to become less active (for health’s sake) is frightening. This is especially true for women who work in agencies when there tends to be a covert blanket denial of an employee’s illness and one may be compelled to work until they drop. In that case, helping the woman see that she is loved and important not simply because she has AIDS is important. For both women and men the self-esteem issue is a very important one. It takes a lot of courage just to live in the world today; add to that a fatal and stigmatized illness, and living becomes burdensome. It is at that point that psychological treatment may become necessary.

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Psychotherapy of people with AIDS has many of the same qualities as treatment of any other patient. While the patient is healthy, she may wish to deal with family of origin issues, problems with a significant other, discipline problems with a child, and so on. It is when HIV rears its head that things change; denial is a healthy way of coping for the most part. When one gets an opportunistic infection be it thrush, shingles, or PCP, then the patient remembers, “Oh yeah, I have AIDS—I’m going to die.” The issue of death and dying is not one I even studied in school. When I began my work in private practice (just 10 short years ago), it never occurred to me that I would be talking with women and men in my office about what they would wear in their casket or what songs might be played at their service. It never occurred to me that part of my public speaking would including giving eulogies. While this is incredibly sad work at times, I am also continually amazed at the strength of the human spirit and how people can tolerate a great deal of suffering yet find moments of joy and peace which make life worth living. (Broun, 1993)

TREATMENT ACROSS THE HIV SPECTRUM HIV is a progressive illness. After initial infection, a patient may remain asymptomatic for up to 10 years. It is important, therefore, to realize that treatment of HIV patients must also take place across the spectrum of the illness. It makes little sense (plus the patient will not let you!) to talk of death and dying issues on initial infection. Similarly, it would be cruel to offer false hope to a person in the final stages of HIV disease. Figure 1 (APA, 1993) shows the associated medical and psychosocial issues across the spectrum of HIV disease. Clinicians must realize that this is not a linear progression—it could take up to 15 years to go through these states depending on numerous cofactors such as access to health care, support, and the person’s will to live. One’s health may suffer a blow with the onset of an opportunistic infection (e.g., PCP), which punctures the patient’s denial and causes great anxiety and fear. Those feelings have to be dealt with at that time. Once the patient has recovered, their denial will kick in again (which is in this case a healthy defense) and the therapist must go with the patient back to the premorbid state of functioning rather than pushing them on to deal with further issues of illness.

GENERAL CONSIDERATIONS IN TREATMENT OF HIV PATIENTS Before discussing the specific phases of the illness and the therapist’s role, let me first comment on some general issues which will confront the therapist. First, the therapist needs to be flexible. I was trained in a very traditional neo-Freudian technique. Needless to say, neutrality does not work when your patient needs help

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walking up the stairs—you help them up the stairs! This kind of flexibility requires some thinking through regarding just how far one is willing to blur the therapeutic boundaries. While I see no reason not to visit a patient’s home or the hospital, I did refuse to serve as a patient’s health-care power of attorney when asked (after consultation with our State Board and in recognition of the litigious nature of today’s society). Therapists must be aware of their need to distance themselves from their patients, or risk becoming too involved in a way that joins with the patient’s denial. A middle ground must be followed. This is where a case management model might fit most neatly—where a certain professional distance is kept— but it is also at times multidimensional (i.e., you are working with the patient, her family, the doctor [who may also be your patient], and so forth). Self-disclosure would be important at this time, even if you have no answer to the question “what happens when you die?” To say “I don’t know but here is what I think” can be quite comforting. Also, respect the patient’s reciprocity in the relationship: take the cup of coffee that is offered or read a letter that is important to your patient—let them feel they have something to give to you. A good review for ambiguous situations might be to consider the following questions (from Focus, 1995): 1. 2. 3. 4.

What is the clinical justification for and intended effects of the behavior? Are there other less problematic ways of achieving the same outcome? What are the benefits to the provider? What does she/he stand to gain? What are the possible problems that could occur for the client, community, or provider? How could the behavior be misconstrued by the client or others? 5. How comfortable would the provider be if this action were reported in the paper?

There have been times when I have presented on panels with patients, with other patients in the audience. It is important for the therapist to normalize the situation as much as possible and to talk it through during the next session. One of my colleagues compared working in the HIV community to working in a small town; for example, you may see the grocer’s son in therapy and then stop at the grocery on the way home to pick up milk and bread. That analogy has been helpful to me in staying present with the patient and recognizing the potential damage that blurring boundaries might take as well as some of the benefits. I believe that the journey one takes toward the end of one’s life is the most intimate journey possible. To be a part of that is a gift to me, but it does require that I watch out for burnout and that I have sources of support for the sadness involved in this work. If you choose to work with HIV patients, then I believe you must also make a choice to get involved with them, their illness, and their families. While most psychologists terminate patients because they get better, frequently ours terminate because they have died. This means the therapist must be prepared to

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deal with his or her own issues about death and dying, helplessness, accepting ambiguity and emotional involvement. One must be prepared to make house calls and hospital visits. One must overcome one’s squeamishness about injections, IVs and other physical ailments that accompany this illness. It is not uncommon for a patient to have diarrhea or nausea, so easy access to a restroom is helpful. Most HIV patients are encouraged not to drink tap water, and distilled water needs to be available. Again, you must realize that you are treating someone who may become very sick and die. You will become attached to them, you will be amazed at their courage, and you will be saddened. That is part of the therapist’s work—to deal with his/her own reactions to the devastation of this illness. There are many times when my job is more that of case manager than psychologist, e.g., helping a patient to become enrolled in a certain service or drug study. It is important to be attuned to all of the AIDS agencies in your community and to get to know them. I do not want the previous paragraph to scare anyone away from this work, but merely to be aware. It has also been the most rewarding and satisfying work I have ever done. Those who choose to work in the area of HIV must be prepared to ride the roller coaster of the illness along with the patient. While scary, it can also be extremely gratifying and exciting to see the changes the patient makes as you ride along. The therapist may consider joining (or forming) a support group for caretakers. In Dallas we have a group of mental health professionals who meet once a month to take about cases, discuss issues, laugh and cry together. Another general character trait that helps in working with women with HIV is a sense of humor. Often, the patients will make up rather macabre jokes or morbid associations during treatment. It greatly helps the alliance if you are able to laugh with them and not be scared by their realistic views. One of my gay male patients referred to the obituaries as the “gay sports pages.” Another patient who wished to be cremated was following the wishes of her mother to first have a viewing and traditional funeral. When told that she would have to rent a casket for the funeral, she responded, “Fine, as long as U-HAUL is not printed on the side.” While I found this quite funny, the funeral director and the patient’s mother were aghast. This joke can be experienced as a “joining together” between therapist and patient. It says you are not scared of what lies ahead and can laugh at the paradoxes life (and death) present us. HIV accelerates adult development. People living with HIV are growing older and wiser faster, operating under perceived and real time constraints. That is one of the joys of working with women infected with HIV for the most part, they are motivated to make the most out of the time they have left. It is not unusual to work with patients your own age who are dealing with issues typically afflicting those much older (health care, power of attorney, living wills, incontinence, inability to see, and so forth). In many ways, working with end-stage AIDS patents is similar to working with geriatric patients.

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TREATMENT GOALS OVER THE COURSE OF HIV DISEASE In referring to Figure 1, let us look at how treatment across the spectrum of HIV changes ( HIV Frontline, 1992).

Getting Tested For many, the decision to get tested is the first step in confronting their denial. This is often quite traumatic and occurs frequently because someone the person has had sex with gets sick or dies of AIDS. It also may be that a person will not get tested until they themselves develop their first opportunistic infection. A positive test result, while expected, may still put the person in a kind of shock. While posttest counseling is most often offered, people tend to hear little of what is said and instead will focus only on their diagnosis. It is important that the therapist inform the patient of factual information, talk about what the specific numbers mean, and so forth. Discuss treatment options, plan who to tell, and begin developing a support system. In my experience, a person who just learns of their positive status is most highly susceptible to thoughts/actions of suicide. It is important to stay in touch and to quell the fears of being delivered an immediate death sentence. Typically, the first thing I try to accomplish with a recently diagnosed individual is to normalize the results.

Early Intervention The patient is no different today than she/he was yesterday, it is just that now they know for sure what they have suspected for some time. It is the time to begin the constant task of empowering the individual. Empowerment, says Terry Tafoya, Ph.D., occurs when the frustration of the person with HIV creates a breakthrough to a different level of involvement and ownership of responsibility for health. This is especially true for women who have historically tended to look to authority figures to tell them what to do. The therapist may need to be fairly directive in helping the patient establish a relationship with a doctor and ob/gyn. Furthermore, it is time to start a plan to maximize their goals with family, spouse or partner, career, etcetera. This is not the time to make decisions ... it is the time to offer options. It generally takes from two weeks to two months for patients to have integrated their HIV positive status as part of themselves, and to feel calmer. Early intervention is especially important if the woman is pregnant. While women who go untreated during pregnancy have a 25% chance of infecting their child in utero, recent studies have shown that women taking AZT during pregnancy and labor reduced that percentage to 8%. ( BETA, 1994)

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Behavior Changes Another important issue arises when a woman’s test comes back as HIV positive. She should be immediately made aware of safe sex and safe behavior. For all women, that includes not emptying cat litter boxes (could pass toxoplasmosis), not sharing needles, razors, or toothbrushes (anywhere moist blood may be lodged; persons with HIV tend to have more oral and dental problems which cause bleeding sores in their mouths). Furthermore, if a woman desires to get her ears or other parts of her body pierced or tattooed, it is important that the instruments be sterile. For heterosexual women, the use of condoms is imperative. While we used to recommend water-based lubricants with nononxynol-9 (which killed the HIV virus in vitro ), this is no longer the case. Studies have shown that a large number of persons are allergic to nononxynol-9 and that it may cause irritation, this increasing the chance of infection. Also, the woman should not perform fellatio without a condom because slight tears or abrasions on the penis could lead to infection. If oral-analcontact (rimming) is performed on the female or male, it is best that a dental dam or piece of Saran wrap be placed over the anus. For homosexual women, the use of dental dams to cover the vagina during oral sex is important. These can be purchased, made from condoms cut down the middle, or Saran wrap may be used. Place lubricant on the side that is applied to the vagina or anus in order for the dam to stay in place. If you are using finger/fist penetration of the vagina or rectum, it is important to protect yourself (especially if your hands are dry or cracked) by using latex gloves with a water-based lubricant. There are now products (called “Dammits”) which are essentially garter belts that hold the dental dams in place. Other items can be purchased by mail order [e.g., Good Vibrations, 1210 Valencia St., San Francisco, CA 94114, (415)550-0827]. Finally, if sex toys are used (e.g., vibrators, dildos), it is necessary to clean them thoroughly between use. Rubbing alcohol should work fine. Middle Stages of HIV As one enters the midstage of the HIV spectrum, it is essential that the patient’s doctor and therapist keep in close contact regarding the patient’s physical and mental health. At this point, the therapist may be asked to help choose a physician, discuss compliance with the medication, and help the patient through resistance to staying in therapy; a very common and difficult issue is that of encountering the notion of dependency and being cared for. During this time, the patient will more than likely develop symptoms. While treatment at home is becoming much more common than hospitalization, the patient has much to deal with. The therapist needs to be prepared to help the patient by making house calls, and adjusting to the loss of control, disability, and impairment. The issue of loss of

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job and income may come up if the patient is put on medical leave of absence. It is important, in my opinion, to now meet the family and significant other in the patient’s life and to reevaluate the patient’s support network. Most of the women I have worked with have already buried the partner who infected them. They may be remarried or in a new committed relationship (gay or straight), and legal issues such as wills and power of attorney need to be reviewed. This is especially true if the patient begins to experience some AIDS-related dementia. Later Stages of the Illness As the patient’s immune system weakens, she may be living with multiple chronic illnesses. I lead a group for HIV-infected women and they are all at various stages of their illness. The ones who are further along find it difficult to feel attractive; they may have constant skin problems, wasting, loss of hair, thrush, or any number of other visible signs of AIDS. Even more insidious and destructive are the loss of self-esteem and feelings of hopelessness engendered by the progression of the disease. Those patients who are in earlier stages of the illness may be frightened by the deterioration they see. In a group such as this, it is the facilitator’s task to bring these fears out in the open and confront them. Also, once the less sick members feel more comfortable, they tend to be a great source of support for the weaker members. Depression and anticipatory grief increase during this time as the patient begins to experience multiple losses—loss of functioning, loss of previous sexual behavior, physical changes, loss of others from this illness, and loss of hope. It is often tempting to tell your patient at this time that “everything will be okay.” She might live through this particular bout of whatever opportunistic infection she has contracted, but everything will never be okay again. I believe it is cruel to offer false hope to others; they know you are not being honest and will, intentionally or not, protect you by shutting you out. Your job now is simply to be: to be with your patient as she cries, to hold or hug her, to take her hand (do not be afraid to touch—the patients are so hungry for the touch of someone who cares). They may want you to read to them or be very clinical and discuss their treatment; whatever the patient needs, it is your job (and greatest gift) to be with her during her fight. As death draws near, I find that going to the patient’s house or hospital room helps me and the patient. One of my patients had developed ICU psychosis and I just sat and held his hand for an hour talking to him; he eventually drifted to sleep. You, by this time, have become a very important person in your patient’s life. You may be asked to facilitate funeral arrangements or to help the patient decide what she wants. I find it helpful to keep funeral planning kits in my office and to have visited a funeral home to know what might be needed in the planning.

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As your patient fades, she may decide to end treatment and all medications. It is important that you examine your feelings about this. Be willing to open yourself to the experience as your patient talks to you of death, afterlife, and saying goodbye. Then it is essential that you take care of your grief too. In my work, I truly feel blessed and honored to assist in these very intimate moments. While tremendously sad, the treatment feels successful if I have facilitated their death in a way that has been comforting and helpful to the patient and the family. I rejoice at the end of their suffering.

RATIONAL SUICIDE The final topic I want to discuss is that of rational suicide. Over the years, even in the gay literature, attitudes have changed from preventing suicide at all costs to consent if the “situation in which dying with dignity is more important than prolonged life” ( Focus, 1994a). While it is my personal belief that it is ultimately the patient’s choice how she or he chooses to die, I ask that the patient be very well informed. I recommend the local Hemlock Society, the book Final Exit, and discussion with the patient’s doctor. While I would feel very uncomfortable assisting in a patient’s suicide, I do believe it is their choice to die with dignity. In 1994 the National Association of Social Workers amended their code of ethics to read that while “it is inappropriate for social workers to deliver, supply, or personally participate in the commission of an act of assisted suicide, when acting in their professional role ... if legally permissible (under state law) it is not inappropriate for a social worker to be present during an assisted suicide if the client requests the social worker’s presence” ( Focus, 1994a). In my experience, virtually every HIV-positive patient contemplates suicide, but in the 11 years I have worked in this field, only three have carried it out. In all three cases, the families were involved and knew of their loved one’s intentions. I was included by having knowledge of the plans, but only once was asked to be present. In that case, a woman had taken enough drugs to kill herself, but she woke up first and her family called me because the patient became very agitated; I stayed with her until a home health-care nurse was able to put her on a morphine drip and she died within 12 hours. Generally, patients will make bargains with themselves, e.g., “when I need a central line I will kill myself.” When the time comes for the line to be put in, the patient realizes “this isn’t so bad, I’ll wait till I develop CMV”; this kind of bargaining tends to outlive the patients, and they die of natural consequences of AIDS. If a clinician is anxious about malpractice and the need to hospitalize, it is my experience that patients will tell you if it is too early for them to die, yet they feel suicidal. Then hospitalization may be necessary.

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Regarding issues of confidentiality and informed consent, the following conclusions might well be considered (Dilley, Pies, & Helquist, 1989). 1. Clinicians should feel reassured by recent court decisions which demonstrate a congruence between clinical and legal standards. Courts have not tended to be overzealous in their expectations that mental health providers’ care always prevent suicides; rather, they expect clinicians to use good clinical judgement in dealing with suicidal clients. 2. Clinicians need to understand legal standards of negligence and informed consent. 3. Clinicians are best safeguarded from malpractice suits by both objective and subjective information. 4. Clinicians should review treatment options with clients and document consultation in cases where action on the part of the clinician can be misconstrued.

I close this section with an extract from Focus (1994a): The moral challenge to clinicians is to be non-moralizing. In considering with patients the issue of rational suicide, our conduct is best determined by not only professional and legal codes, but by the dictates of the human and caring spirit. It is part of our task as clinicians to nurture that spirit and trust its influence on our judgement.

REWARDS OF THIS WORK Finally, the question inevitably arises, “Why do you do this work?” At times it is a question I ask myself after having lost over 50 patients, partners, or family members. There are times I feel enraged at AIDS, but it only takes one session with one patient who is fighting daily for her life to remind me what a blessing this job is. They are grateful for your help and seldom act out in destructive ways. This work allows me to enter into the intimate experiences of patients and families as they struggle for meaning. I feel lucky to be alive each day—my patients have taught me what a gift life is. Finally, I have learned that we only have one life on this earth. It is a gift and we should take risks, open up and live ... for those who can’t. REFERENCES American Psychological Association. (1993, Winter). Psychology & AIDS exchange. Berry, J., Morrison, V., & McLachlan, S. (1992). Working with women and AIDS. London: Tavistock/ Rutledge. BETA: Bulletin of experimental treatments for AIDS. (1994, June). San Francisco AIDS Foundation. Bor, R., & Elford, E. (1994). The family and HIV. Redwood Books. Broun, S. N. (1993, May). AIDS SUPPORT A Personal Journey. Reprinted with permission from the Dallas Psychologist. Dilley, J. W., Pies, C., & Helquist, M. (1989). Face to face: A guide to AIDS counseling. AIDS Health Project, Box 0884, San Francisco, CA 94143-0884.

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Focus: A guide to AIDS research and counseling (1994a, April). Vol. 7, No. 5. Focus: A guide to AIDS research and counseling (1994b, April). Vol. 9, No. 5. Focus: A guide to AIDS research and counseling (1994c, September). Vol. 8, No. 9. Focus: A guide to AIDS research and counseling (1995, January). Vol. 10, No. 2. Lemp, G., Jones, M., Kellogg, T., et al. (1993). Seroprevalance and risk behaviors among lesbians and bisexual women: The 1993 San Francisco/Berkeley Women’s Survey. San Francisco Department of Public Health. Lesbians and HIV. (1994, September). Vol. 8, No. 9. HIV Frontline. (1992, June). Published by Leon McKensit, Ph.D., of the Center for AIDS Prevention Studies. Burroughs Wellcome Co. Kline, A., Kline, E., & Oken, E. (1992). Minority women and sexual choices in the age of AIDS. Social Science Medicine, 34 (4), 447-457. Mays, V., & Cochran, S. (1988). Issues in the perception of AIDS risk and risk reduction activities by black and Hispanic/Latino women. American Psychologist, 47(11), 949-957. Rudd, A. P., & Taylor, D. (Eds.). (1992). Positive women: Voices of women living with AIDS. Toronto: Second Story Press. Shilts, R. (1988). And the band played on. New York: Penguin Books.

7

Women’s Reproductive Decisions in the Context of HIV Infection John B. Jemmott III and Suzanne Miller The news that one has a terminal disease is likely to have a devastating impact. And so, it is not surprising that people who learn they are HIV-seropositive experience great emotional distress. Anxiety, anger, depression, somatization, and denial are common emotional reactions (Jemmott, Sanderson, & Miller, 1995; Kelly & St. Lawrence, 1988). There may also be substantial social consequences. Friends may disengage from the HIV-seropositive person. Relationships may culminate precipitously. The person may suffer discrimination in employment, in housing, and in everyday living. Any person who is infected with HIV may suffer these sequelae, but the consequences of a diagnosis of HIV infection for a woman of childbearing age are particularly grim. She has the psychological stress of facing not only early death, but also the decision of whether to forego one of the most wonderful aspects of life. Having a child is a source of joy, self-definition, and self-affirmation; for the HIVseropositive woman, however, the decision about whether to have a child is likely to be fraught with anxiety. She must weigh the strong desire to bear a child against the knowledge that she may pass the virus to any child she may bear and that she is unlikely to survive long enough to fulfill her role of parent until her child reaches adulthood. In this chapter, we review research on women’s reproductive decisions in the context of HIV infection. We begin with a brief review of the nature of the HIV epidemic among women and children, including the risk of perinatal (i.e., motherto-infant) transmission of HIV. We then review evidence on the effects of HIV serostatus on women’s reproductive decisions, including (1) the decision to beJOHN B. JEMMOTT III • Department of Psychology, Princeton University, Princeton, NJ SUZANNE MlLLER • Division of Population Science, Fox Chase Cancer Center, 08554. Philadelphia, PA 19107. Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 167

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come pregnant and (2) the decision to terminate or continue a pregnancy. Next we consider social psychological factors that may underlie reproductive decisions in the context of HIV. Finally, we offer recommendations for future research, including suggestions for improvements in research design and methodology.

WOMEN, CHILDREN, AND HIV To understand fully the effects of HIV serostatus on women’s reproductive decisions, we must understand the impact of the HIV epidemic on women and children. Although most cases of AIDS reported in the United States have involved men who engaged in same-gender sexual activities (CDC, 1995), the number of AIDS cases among women and children is increasing at an alarming rate. Over 64,000 adult and adolescent women have been diagnosed with AIDS (CDC, 1995) and AIDS is a leading killer of women of childbearing age (Chu, Buehler, & Berkelman, 1990). One particularly pernicious aspect of AIDS among women is that it affects the most vulnerable young women in their prime reproductive years. About 80% of women diagnosed with AIDS have been 13 to 44 years of age (CDC, 1995). Impoverished African-American and Hispanic women have suffered disproportionately. African Americans comprise 13% of women of childbearing age, but account for 56% of AIDS cases among these women. Hispanic Americans comprise 8% of women of childbearing age, but 21% of AIDS cases among women of childbearing age. Injecting drug use and sexual involvement with injecting drug users account for most reported AIDS cases among Hispanic (71%) and AfricanAmerican (66%) women. These most vulnerable of women are least likely to have access to the medical, financial, emotional, and social resources necessary to cope with AIDS. Statistics on AIDS cases among women do not fully convey the social and emotional toll of AIDS on women and their children. The high incidence of AIDS among women of reproductive ages means that many women will have to cope with the realization that because of AIDS they cannot be the kind of mother for their children that they would prefer to be. And many will have to come to grips with the knowledge that their children may become orphans. The high incidence of AIDS among women of reproductive ages also means that many children will have to live with a terminally ill mother and ultimately will be orphans. Besides coping with terminal illness and its ramifications, HIV-infected women must deal with the possibility of perinatal transmission of HIV, the possibility that they may transmit HIV infection to their offspring before, during, or after birth. Over 6611 children 12 years of age or younger have been diagnosed with AIDS, and AIDS is the seventh leading cause of death in children 1 to 4 years of age (National Center for

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Health Statistics, 1993). The overwhelming majority (90%) of children with AIDS acquired HIV through perinatal transmission (CDC, 1995). Fortunately, the fact that a woman is HIV seropositive does not necessarily mean that children born to her will be infected with HIV. In fact, most HIV-infected pregnant women do not transit the infection to their infants. On average, about 25% of children born to HIV-infected women are infected with HIV. To be sure, the children of HIV-infected mothers will test positive for HIV antibodies at birth. But this may reflect the presence of maternal HIV antibody rather than viral infection. It is only when the infant is 15 to 18 months of age that serologic tests are diagnostic of HIV infection. Currently, it is not possible to predict whether a given pregnancy will result in transmission of HIV to the child. Studies have linked breastfeeding and maternal advanced HIV clinical stage during pregnancy to increased perinatal transmission (Boylan & Stein, 1991; Dunn, Newell, Ades, & Peckham, 1992). Recent evidence indicates that treatment with the antiviral drug zidovudine (ZDV) can reduce substantially the risk of perinatal transmission (Boyer et al., 1994; CDC, 1994). In a randomized double-blind, placebo-controlled study (CDC, 1994)—the AIDS Clinical Trials Group (ACTG) Protocol 076—ZDV was administered orally to HIV-seropositive women beginning at 14 to 34 weeks’ gestation and continued throughout pregnancy, followed by intravenous ZDV during labor, and oral administration of ZDV to the infant for 6 weeks after delivery. A control group received a placebo regimen administered identically. This important study revealed that ZDV therapy caused a highly significant two-thirds reduction in perinatal transmission. Transmission of HIV occurred in 8.3% of the 180 children in the ZDV group, compared with 25.5% of the 184 children in the placebo group (CDC, 1994). Although this study raises the hope that ZDV therapy can sharply reduce the risk of perinatal transmission of HIV, it is important to note that ZDV did not eliminate perinatal transmission (Mofenson, Balsley, Simonds, Rogers, & Moseley, 1994). In addition, some HIV-infected women seek medical care late in pregnancy or when they are already in labor, when the full ZDV regimen used in ACTG Protocol 076 cannot be administered. Moreover, many pregnant women are unaware that they are infected with HIV and, consequently, may not receive information about ZDV therapy. Accordingly, despite the promise of ZDV therapy, perinatal transmission remains an important concern (Mofenson et al., 1994). Concurrent pregnancy and HIV infection also raises concerns about the effects of pregnancy on the mother’s clinical condition (i.e., HIV disease progression) and the effects of HIV on the course of pregnancy. As to the former, pregnancy itself can be immunosuppressive; hence, the concern exists that pregnancy might pose a serious medical problem for women whose immune systems are already suppressed because of HIV disease. Reviews of the literature suggest

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few serious medical complications among HIV-infected pregnant women who are relatively immunocompetent (Brettle & Leen, 1991; Vermund, Galbraith, Ebner, Sheon, & Kaslow, 1992). However, the patients in most of the studies were in the early stages of HIV disease, and the picture may be different as HIV disease advances. Several studies have examined the effects of maternal HIV infection on the course of pregnancy. Although the studies have methodological weaknesses, including the lack of appropriate control groups, small sample size, and incomplete assessment of drug use, nutrition, and coinfections, they suggest that HIV does not adversely affect pregnancy outcomes (Vermund et al., 1992). For instance, HIVseropositive and -seronegative pregnant women do not have different rates of premature or low-birth-weight births.

HIV SEROSTATUS AND REPRODUCTIVE BEHAVIOR HIV-seropositive women face two important decisions regarding reproduction: They must decide whether to become pregnant and, if they are pregnant, they must decide whether to have an abortion. In this section, we review studies on these reproductive decisions. HIV Serostatus and Pregnancy Decisions Avoiding pregnancy is an effective way to avoid perinatal transmission of HIV. However, it has the drawback of foregoing the joys of having a child. Pregnancy decisions under such circumstances present a conflict likely to be particularly marked by anxiety and ambivalence. Surprisingly few studies have examined the pregnancy decisions of HIV-seropositive women. Of the seven studies we were able to identify, most (four) were descriptive studies, reporting only the incidence of pregnancy among a convenience sample of HIV-seropositive women. For instance, in a longitudinal study conducted by Kaplan et al. (1989), 134 HIV-seropositive women of childbearing age were counseled repeatedly about the importance of practicing contraception and safer sex. Kaplan et al. reported that 7.5% of the women became pregnant. Schneck et al. (1989) studied 43 HIVseropositive women in Newark, NJ, and found that 16% became pregnant within 2 to 20 months after receiving their HIV antibody test results. Barbacci, Chaisson, Anderson, and Horn (1989) conducted a retrospective review of the pregnancy decisions of 89 HIV-seropositive women at prenatal and HIV clinics in Baltimore, MD. They reported that 16% of the women became pregnant after they learned they were infected with HIV. A study by Carpenter, Mayer, Fisher, Desai, and Durand (1989) also focused exclusively on women who were HIV-seropositive. It differs from the other studies in that all of the women had been diagnosed with AIDS. The chief risk factors of

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the 24 Rhode Island women in the study were injecting drug use and sexual relations with HIV-seropositive persons. This study had the lowest percentage of women who became pregnant. Although the majority of the women continued to be sexually active after receiving the diagnosis of AIDS, they used barrier methods of contraception and none became pregnant during the study. It is tempting to conclude that the percentage pregnant was lower in this study than in the others because the women were in a later, more serious stage of HIV disease. In this view, experiencing symptoms and complications makes salient the possibility of transmission and concerns about one’s own health and the ability to care for a child. However, there is no direct evidence to support this supposition. Taken together, these studies suggest that some women who are HIVseropositive do become pregnant. However, the studies do not clarify whether the observed pregnancy rates are low, high, or about what should be expected in the absence of HIV seropositivity. In addition, the studies do not provide evidence on whether HIV serostatus is related to women’s pregnancy decisions because they lacked control groups of women who did not perceive themselves to be HIVseropositive. Three studies have included such control groups. Sunderland, Minkoff, Handte, Moroso, and Landesman (1992) examined whether women who had been informed of their serostatus subsequently became pregnant. They reported that the percentage of women becoming pregnant did not differ significantly among HIVseropositive (23%) and -seronegative women (18.8%). Sunderland et al. also reported evidence consistent with the view that seropositive women with more advanced disease are especially unlikely to become pregnant. Among the 10 seropositive women who were diagnosed with AIDS during a follow-up period there were no live births and only one induced abortion. Two studies conducted in Africa also examined pregnancy among HIVseropositive women, though implications for the United States must be drawn cautiously because of differences in culture, education, birth rate, income, and prevalence of AIDS. A study conducted by Temmerman et al. (1990) at a large maternity hospital in Nairobi, Kenya, revealed no relation between HIV serostatus and pernancy. In this study, asymptomatic HIV-seropositive women who had recently given birth were informed of their HIV serostatus and counseled about contraception. These women and a comparison group of HIV-seronegative women matched for pregnancy outcome were followed for 1 year. Temmerman et al. reported that the HIV-seropositive and -seronegative women did not differ significantly in contraceptive use, condom use, or pregnancy rates during the follow-up period. Allen et al. (1993) conducted a study on 1458 childbearing urban Rwandan women who received an HIV antibody test and counseling about perinatal transmission and the possible risk to HIV-seropositive women of pregnancy. Although the percentage of women who stopped using hormonal contraceptives was greater

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among HIV-seropositive women than among HIV-seronegative women, the HIVseropositive women reported a greater increase in condom use than did their HIVseronegative counterparts, particularly if both the women and their sexual partner had received HIV testing and counseling (Allen et al., 1992). Most importantly, the HIV-seropositive women were significantly less likely to become pregnant during the 2 years after testing and counseling than were the HIV-seronegative women (Allen et al., 1993). However, the observed reduction in pregnancy cannot be confidently attributed to HIV testing and counseling because the HIV-seropositive women were also less likely to be pregnant at enrollment, before receiving their test results. Accordingly, the HIV-seropositive women may have had a lower propensity to become pregnant, which would explain their lower pregnancy rate at the follow-up. These three studies do not provide strong evidence that HIV serostatus is related to pregnancy decisions. In two of them, HIV-seropositive and -seronegative women did not have different rates of pregnancy, and in the third study, preexisting differences in the propensity for pregnancy may account for the lower pregnancy rate observed among HIV-seropositive women compared with HIVseronegative women. HIV Serostatus and Pregnancy Termination and Continuation The second type of reproductive decision an HIV-seropositive woman may face is whether to terminate a pregnancy. This is perhaps one of the most wrenching decisions she will ever face. The issue of abortion itself is extremely emotional. Dealing with abortion in the context of HIV raises the emotional toll even higher. Often the woman may not realize that she is HIV-seropositive until she is tested in connection with her pregnancy. Such women are in the unenviable position of grappling with HIV-positive serostatus and with an abortion decision at the same time. In many instances women are not aware of being HIV-seropositive until after 24 weeks’ gestation, beyond a common legal limit for abortion. Indeed, often women are unaware they are HIV-seropositive until after they have given birth. In this section, we focus on women for whom abortion is an option. Some studies have reported the abortion rate among HIV-seropositive women without providing a context for evaluating that rate. For example, Kaplan et al. (1989) reported that, excluding miscarriages, there were 10 pregnancies among women who were HIV-seropositive and 7 were terminated. Barbacci et al. (1989) conducted a retrospective review of pregnancy termination decisions of 89 seropositive women at prenatal and HIV clinics in Baltimore. They found that, excluding miscarriages, there were 2 terminated pregnancies among 9 infected women who were less than 20 weeks’ gestation. Schneck et al. (1989), studying seropositive women in Newark, NJ, found that 6 of 9 pregnancies were terminated. Wiznia, Bueti, Douglas, Cabat, and Rubinstein (1989), studying a sample of 22

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infected pregnant women in the Bronx, NY, for whom legal abortion was an option, found that 6 terminated the pregnancy. These studies suggest that many but not all HIV-seropositive women who have the option terminate their pregnancy. The abortion rates are difficult to interpret because it is not clear what the rate would have been had the women not known they were HIV-seropositive. Four studies of abortion decisions included both seropositive and seronegative women who knew their serostatus prior to 24 weeks’ gestation. Selwyn et al. (1989) conducted a study on the relation of HIV serostatus to abortion decisions among 64 pregnant women with a history of injecting drug use who were enrolled in a methadone maintenance treatment program in the Bronx. About 62% of the women were married. The sample was racially diverse: 48.4% Hispanic, 31.2% white, and 20.3% black. All of the 28-HIV seropositive women were asymptomatic. They had been counseled that there was a 20 to 50% chance that an HIVseropositive woman would give birth to a child infected with HIV. In addition, they were told that there was an uncertain risk of adverse effects of pregnancy on the health of HIV-seropositive women. Selwyn et al. reported that although the percentage terminating their pregnancy was greater among the HIV-seropositive women than among the seronegative women, the difference was small and far from statistically significant. Johnstone et al. (1990) examined abortion decisions among 163 pregnant women (69 seropositives and 94 seronegatives) in Edinburgh. All of the women were either injecting drug users or the sexual partners of HIV-seropositive injecting drug users. No other information about the demographic characteristics of the women was reported. All of the women knew of their serostatus before 22 weeks’ gestation. Although Johnstone et al. reported that the women were counseled about HIV and pregnancy, they did not indicate what the women were told about the risk of perinatal transmission and adverse effects of pregnancy on HIV disease. Johnstone et al. reported that although a higher percentage of the seropositive women terminated their pregnancy, the difference was not statistically significant. Pivnick et al. (1991) examined abortion decisions among 34 pregnant injecting drug users who were enrolled in a methadone maintenance treatment program. The women represent a subset of a larger sample of 126 program enrollees. Although no data are presented on the demographic characteristics of these 34 women, in the whole sample, 62% of the women were Hispanic, 30% were black, and 8% were white. About 50% of the women in the whole sample were married. The extent to which these data characterize the 34 women in the study sample is unknown. Unlike the other studies, HIV serostatus in this study was based on selfreport. All 34 women reported knowing their serostatus before 24 weeks’ gestation. One-half of them reported that they were seropositive, and the others reported that they were seronegative. Pivnick et al. found that the self-reported HIVseropositive women were marginally more likely to report terminating their pregnancy than were the self-reported HIV-seronegative women.

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A study conducted by Sunderland et al. (1992) revealed the strongest support for the hypothesis that the abortion rate is higher among seropositive women than among seronegative women. Sunderland et al. studied 66 women (32 seropositives and 34 seronegatives) enrolled in prenatal care in Brooklyn, NY. About 30% of the women were drug users. About 66.5% of the women were black, 4.3% were white, and 26.7% were of another race/ethnicity, largely Hispanic. Only 28.6% of the women were married. The women had been counseled that the risk of perinatal transmission was 20 to 50% and that concurrent pregnancy and HIV infection may pose an increased risk to a woman’s health. Sunderland et al. found that the percentage of women electing an abortion was significantly higher among the seropositive women than among the seronegative women. These four studies provided data relevant to the hypothesis that HIV serostatus affects pregnancy termination decisions, but revealed results that seem to support different conclusions. Although the Sunderland et al. (1992) study supported the hypothesis, the Pivnick et al. (1991) study supported it only marginally, and the Johnstone et al. (1990) study and the Selwyn et al. (1989) study did not support it at all. To clarify whether the results of the four studies, taken together, support the hypothesis, we performed a meta-analysis (Rosenthal, 1984). We used the Pearson product-moment correlation coefficient, computed from the N and the Z or χ2 value, as the index of effect size (Rosenthal, 1984). As shown in Table 1, the effect sizes obtained in the four studies ranged from about 0.10 to 0.30. These effect sizes were not significantly heterogeneous. A test of the homogeneity of the effect sizes was nonsignificant, χ2 = 2.50, df = 3, p > 0.45, indicating that the variance in effect sizes was not greater than expected by sampling error alone. Because the effect sizes were not significantly heterogeneous, we proceeded to combine the results of the studies. We calculated the mean effect size by converting the r to a Fisher z, calculating the mathematical

Table 1.

Summary of Results of Studies of Abortion Decisions by Pregnant Women Percentage electing abortion

Study Johnstone et al. (1990) Selwyn et al. (1989) Sunderland et al. (1992) Pivnick et al. (1991)

N

HIV positive

HIV negative

163 64 66 34

44.9 50.0 18.8 52.9

35.1 44.4 2.9 23.5

Difference

Effect size (r)

Onetailed p

Z

9.8 5.6 15.9 29.4

0.10 0.06 0.26 0.30

0.100 0.330 0.019 0.039

1.27 0.44 2.08 1.76

r = Pearson product-moment correlation coefficient summarizing effect size; Z = the standard normal deviate for the one-tailed significance probability. Positive r’s and Z’s indicate a greater percentage electing abortion among seropositives than among seronegatives.

a

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average, and then converting the average Fisher z to an r. We also calculated an average weighted effect size by weighting the Fisher z’s by n – 3 (Cooper, 1989). The mean effect size was 0.18 and the mean weighted effect size was 0.14. To obtain a combined significance probability, we converted the significance probabilities for each study to one-tailed values, and applied the Stouffer method of adding Z’s (Rosenthal, 1984). Analyses performed on both unweighted Z’s and Z’s weighted by sample size revealed that the combined results of the four studies indicated a significant effect of HIV serostatus on pregnancy continuation decisions. For example, the combined significance probability was 0.01 using the weighted Stouffer method, indicating that the percentage of women who terminated their pregnancy was significantly greater among the seropositive women than among the seronegative women. The likelihood that the observed significance probabilities from the four studies would have resulted if the null hypothesis of no difference between the percentage of women terminating pregnancy in the two groups were true is less than 1 in 100. Thus, the data are consistent with the view that HIV-positive serostatus is associated with a greater incidence of abortion.

SOCIAL-PSYCHOLOGICALFACTORS AND REPRODUCTIVE DECISIONS IN THE CONTEXT OF HIV The hypothesis that HIV serostatus can affect reproductive decisions raises the question of how that might occur. For example, in interpreting evidence linking HIV serostatus to elective abortion, one assumes that perceived HIV serostatus affected some intervening social and psychological mechanism that led to an elective abortion. Unfortunately, we know little about the mediating mechanisms that underlie the relationship between HIV serostatus and reproductive outcomes. In this section, we consider social and psychological variables that might be mediators of a relation between HIV serostatus and reproductive outcomes. In addition, we examine social and psychological variables that, although not mediators of such a relationship, may be important predictors of reproductive decisions in the context of HIV. A number of variables come to mind when one considers what might explain or predict women's reproductive decisions in the context of HIV. The desire for a child, attitudes toward pregnancy, the perceived effects of pregnancy on health, perceived health of the child, perceptions of social support, the perceived approbation of the woman's partner and other significant others, the opinions of medical personnel, and the availability of financial resources are all examples of the kinds of variables that might be considered. Although many of these variables can be culled from the literature, they have not been integrated into a single theoretical framework and research on them seems atheoretical. To help organize these variables, we will use a conceptual model that draws heavily on the theory of

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planned behavior (Ajzen, 1991; Madden, Ellen, & Ajzen, 1992). The goal of the proposed model is to predict women’s reproductive outcomes. The proposed model draws a distinction between pregnancy and behavior likely to cause a pregnancy. The distinction is important because people can have volitional control over their behavior, but may not have volitional control over whether they become pregnant. There can be considerable slippage between the attempt to become pregnant (or to avoid pregnancy) and whether a woman becomes pregnant. Social and psychological variables can have a direct impact on behavior, but only an indirect impact on pregnancy. Unfortunately, most studies of women’s pregnancy decisions in the context of HIV have not focused on behavior. Consistent with the theory of planned behavior, the proposed model holds that the direct determinant of whether a person takes action to become pregnant is the intention to become pregnant or the desire to have a child. The intention to become pregnant, in turn, is determined by attitude toward becoming pregnant, subjective norm about becoming pregnant, and perceived behavior control over pregnancy. Attitude toward pregnancy has to do with whether the woman’s feelings about becoming pregnant are positive or negative. A similar analysis can be applied to elective abortion, with intentions, attitudes towards abortion, and subjective norms regarding abortion as the determinants. Attitude toward pregnancy is determined by beliefs about the consequences of pregnancy. Several types of beliefs may be important: for example, perinatal transmission belief—whether the woman believes that the child will be infected with HIV, beliefs about the consequences of HIV and pregnancy—whether the woman believes that pregnancy will accelerate her own disease progression; and beliefs about personal prognosis—whether the woman believes she will die early in the child’s life. In addition, research by Selwyn et al. (1989) would suggest that beliefs about the emotional consequences of having a child are likely to affect attitudes. Selwyn et al. found that compared with HIV-seropositive women who had an abortion, the HIV-seropositive women who continued their pregnancy were more likely to report feeling happy and less likely to report feeling sad, upset, or afraid when they first learned they were pregnant. However, these findings are only suggestive because Selwyn et al. assessed the women’s feelings about 8 months after the pregnancy outcome, leaving unclear whether the feelings had impact at the time of the decision or were postdecision constructions. Attitudes toward abortion are likely to be influenced by beliefs about the emotional consequences of having an abortion. The perceived financial consequences of having a child are likely to be important to attitudes. In addition, whether the woman believes she will have social support to help rear the child and to cope with her disease may be important. The second determinant of intentions is subjective norm regarding becoming pregnant or having an abortion. If the woman believes that people who are important to her approve of her becoming pregnant, she is more likely to intend to

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become pregnant than if she believes they disapprove of her becoming pregnant. Similarly, the belief that important others would approve of her having an abortion is likely to increase a woman’s intention to have an abortion. The HIV-infected woman’s key referents are likely to include her spouse or partner, her mother and other relatives, and medical personnel or counselors. That subjective norms are important was suggested by results of the Selwyn et al. (1989) study. They reported that 91% of the HIV-seropositive women interviewed said they had discussed their pregnancy decision with their spouse or boyfriend, mother, friends, or siblings. In addition, 80% indicated they followed the significant others’ advice. The third determinant of intentions is perceived behavioral control. Women will be more likely to plan to become pregnant if they are confident that they can engage in behaviors likely to cause pregnancy. Of course, this becomes more interesting when one considers the intention to avoid pregnancy. Women are more likely to intend to avoid pregnancy if they are confident of their ability to engage in such behaviors as abstinence and contraceptive utilization. Similarly, women are more likely to plan to have an abortion if they believe they have the resources to obtain one. In the proposed model, HIV serostatus, that is, perceived HIV serostatus, has its impact by affecting one or more of the above-mentioned variables. In the language of the theory of planned behavior, perceived HIV serostatus is an “external variable” (Ajzen, 1991; Fishbein & Ajzen, 1975). It does not directly affect behavior likely to induce pregnancy or elective abortion. Rather, its effects are mediated by the attitudinal, normative, or behavioral control components of the model. The most likely mediators of the effects of HIV serostatus may be in the attitudinal component, namely, beliefs about perinatal transmission and the consequences of concurrent HIV infection and pregnancy. In this view, a woman’s perception that she is HIV-seropositive will increase her perceived risk of transmitting HIV to her child and will increase her belief that pregnancy will impair her health. These beliefs will buttress her intention to have an abortion. Perceived HIV serostatus may also moderate the influence of social support on attitudes. For example, a woman’s belief that she has social support for childrearing or her personal care is likely to be a stronger determinant of attitudes toward becoming pregnant among HIV-seropositive women than among HIV-seronegative women. It is difficult to predict whether perceived HIV serostatus will affect beliefs about the emotional or financial consequences of having a child or normative beliefs. Although perceived HIV-positive serostatus may operate to increase positive attitude toward having an abortion, the degree of increase may be assuaged by the perceived positive emotional consequences of having a child and the perception of social support to rear the child and cope with AIDS. Moreover, even if proabortion attitudes increase, the woman may still intend to carry the child to term because of subjective norms, namely, the perception that sexual partner, family members, or friends think she should have the child. The study by Selwyn et al. (1989) provides

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a good illustration of how perceived HIV serostatus can affect beliefs about perinatal transmission while not affecting reproductive outcomes. Although Selwyn et al. found that the perceived risk of perinatal transmission was significantly higher among HIV-seropositive women than among HIV-seronegative women, perceived risk of transmission was unrelated to the women’s abortion decisions. This is reminiscent of results that have been found in studies of the decisions of women who risk bearing children with serious health problems caused by genetic disorders: Although genetic counseling increases perceptions of risk, it does not reduce intentions for pregnancy, curb the initiation of pregnancy, or increase utilization of prenatal diagnosis among women at risk for bearing children with birth defects or genetic disorders (Kessler, 1989; Oetting & Steele, 1982; Sorenson, Scotch, Swazey, Wertz, & Heeren, 1987). We should consider a number of other external variables, including the woman’s age, number of previous children, marital status/presence of male partner, stage of disease, substance abuse history, race, and socioeconomic status. Like perceived HIV serostatus, these variables are hypothesized to have their effect by influencing the attitudinal, normative, or behavioral control components of the proposed model. Age, number of previous children, and marital status or presence of male partner all tap into what might be termed “developmental readiness.” Rearing a child is an important facet of the overall life plan of many women, and those who have not experienced rearing a child may be unwilling to forego that experience—even in the face of serious illness. These women who are older, who have not had any children, and who are married or have a steady partner are likely to perceive more positive emotional consequences of becoming pregnant. HIVseropositive women may carry pregnancies to term because they fear that they may become too ill in the future to become pregnant again. Pivnick et al. (1991) found that HIV-seropositive women who had not lived with a child for the child’s entire life were less likely to terminate their pregnancies than were their counterparts who had had such experience. In addition, HIV-seropositive women who are married may believe they have more social support for childrearing and coping with HIV disease, which would increase their attitude toward pregnancy. The state of disease may affect beliefs about perinatal transmission and consequences of HIV and pregnancy. The risks of perinatal transmission and adverse effects of pregnancy to the woman’s own health may be more salient if she is in a more advanced stage of HIV disease. This might explain why the percentage of HIV-positive women who became pregnant was lower in the Carpenter et al. (1989) study, which focused on women with AIDS, than in the studies of HIVseropositive women more broadly (e.g., Barbacci et al., 1989; Kaplan et al., 1989; Schneck et al., 1989). In addition, in Sunderland et al. (1992), 23% of HIVseropositive women became pregnant, whereas none of the HIV-seropositive women diagnosed with AIDS became pregnant. Inasmuch as women who know about their HIV-positive serostatus a longer time are likely to be in a more

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advanced stage, the results of the Pivnick et al. (1991) study are also consistent with this line of argument. Pivnick et al. found that women who knew about their HIVpositive serostatus for a longer time were more likely to terminate their pregnancy. The stage of disease may also be a moderator of the social support beliefs. Such beliefs may be especially strong determinants of attitude toward pregnancy among women who are in a later stage of HIV disease progression. Although a woman’s substance abuse may not have direct effects, it may interact with intentions to affect behavior likely to induce pregnancy. Injecting drug use may cloud judgment and interfere with a woman’s ability to implement intended behavior; consequently, the intentions of women who are injecting drug users may be less predictive of their behavior than are the intentions of women who are not injecting drug users.

DISCUSSION The studies of reproductive decisions among HIV-seropositive women suggest that many women become pregnant even though they know they are HIVseropositive and have been counseled about the risks of perinatal transmission. In addition, there was no evidence that HIV-seropositive women were less likely to become pregnant than were their HIV-seronegative counterparts. Although the meta-analysis of studies of pregnancy continuation and termination suggested that HIV-seropositive women were significantly more likely to terminate a pregnancy than were HIV-seronegative women, the difference was relatively small. Overall, then, the evidence suggests that HIV serostatus has no or little impact on women’s reproductive decisions. A number of writers have raised concern that efforts to reduce perinatal transmission may become coercive (e.g., Amaro, 1993; Bayer, 1990; Levine & Dubler, 1990). Instead of simply receiving clear information about the risks and options, HIV-seropositive women may be pressured to avoid pregnancy or to have abortions. Health care professionals and counselors may believe that women who are HIV-seropositive have a moral obligation to refrain from bearing children because the children have a high risk of being afflicted with HIV or because the women are unlikely to survive to rear the children. However, HIV-infected women may hold a different view, a view informed by their own values, needs, desires, and evaluations of the risk. Consider, for example, the impoverished African-American or Hispanic woman who has never had a child. The admonition not to bear a child may conflict with her desire to produce biologic descendants. And so, to the woman, it may seem reasonable to bear a child, in spite of the perceived risk of perinatal transmission of HIV. In addition, interpretations of risk information are inherently subjective. What seems like a substantial risk to some may not seem like a substantial risk to

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others. A 25% chance of HIV infection is a 75% probability of noninfection, and the alternative—the 100% chance of not having a child—may seem even less desirable. Moreover, some people are more tolerant of risk than are others, and it is impossible to establish whether the risk taker or the risk avoider is more rational. In this light, those who counsel women about the risk of perinatal transmission of HIV must be cognizant of the danger of imposing their values. Women should be given all information relevant to the decision and permitted—indeed, supported— to make the decision that they see as best for them. In the long run this approach will be most effective, for the HIV-seropositive women are the best judges of what is appropriate in their specific cases. It is noteworthy that the conclusion we reached regarding the reproductive decisions of HIV-seropositive women dovetails with results of research on the decisions of women who risk bearing children with serious health problems caused by genetic disorders. The literature on genetic counseling makes clear that informing women about a potential health problem in their unborn child does not necessarily result in reduced pregnancy, increased abortion, or decreased births. Despite counseling, many women who are at high risk of bearing a child with sickle-cell anemia (Neal-Cooper & Scott, 1988), cystic fibrosis (Leonard, Chase, & Childs, 1972; McCrae, Cull, Burton, & Dodge, 1973), and Down’s syndrome (Leonard et al., 1972; Oetting & Steele, 1982) go on to have children. Although genetic disorders are not the same as AIDs and do not constitute a homogeneous group with respect to the nature of the risks they pose, the decisions of women who risk transmitting HIV to their offspring and those who risk transmitting a genetic disorder to their offspring are similar. As is often the case in relatively new areas of research, the evidence on women’s reproductive decisions in the context of HIV comes from studies that used designs that do not permit inferences about relationships or that inherently constrain the internal validity of causal inferences. A large percentage of the studies focused on HIV-seropositive women who knew their serostatus. Such descriptive studies cannot provide evidence on whether HIV serostatus is related to reproductive behaviors. Several studies did include HIV-seropositive and -seronegative women who knew their serostatus. Such studies can establish whether HIV serostatus predicts subsequent reproductive behavior. However, there is the possibility that the obtained relationships are not causal, but rather the result of some unconsidered confounded variable. Differences between HIV-seropositive and -seronegative women before they became aware of their serostatus may account for the observed differences in reproductive outcomes after they learned their serostatus. For example, women who are HIV-seropositive may be more likely to terminate a pregnancy than are other women, even in the absence of knowledge of seropositivity. Consistent with this view, Pivnick et al. (1991) found that seropositive women reported having a greater number of abortions than did seronegative women. In a similar vein, the Allen et al. (1993) study in Rwanda

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found that HIV-seropositive women were less likely to be pregnant before receiving their test results than were HIV-seronegative women. The Johnstone et al. (1990) study also suggests the importance of examining potential confounding variables, particularly intentions. In that study, 25 of the HIV-seropositive women learned of their serostatus during pregnancy within 22 weeks’ gestation, and 10 of these women terminated the pregnancy. However, 9 of the latter group had requested abortion on other grounds before they were tested for HIV. For these women, perceived HIV serostatus could not be the causal factor; they had an intention for abortion before being tested. Moreover, the literature on genetic counseling highlights the importance of people’s reproductive intentions before the receipt of risk status information. In several studies, the chief determinant of postcounseling outcome was precounseling reproductive intentions and the desire for children—not counseling itself (Kessler, 1989). One way to address the issue of preexisting differences between HIVseropositive and -seronegative women is to compare the reproductive outcomes of HIV-seropositive women who knew their serostatus and those of HIV-seropositive women who did not know their serostatus. Unfortunately, we found no studies that used such a design. Another approach would be to use a design that holds constant the likelihood of pregnancy termination. In this view, a strength of the Sunderland et al. (1992) study is that the women were enrolled in prenatal care, which would indicate that they intended to continue rather than terminate their pregnancy. Although this is an advantage compared with the other studies, even the Sunderland et al. study does not rule out the possibility that the seropositive group had a greater a priori propensity for abortion than did the seronegative group. The inferential problems revolving around the effects of serostatus are difficult to resolve given that people are not randomly assigned to positive and negative HIV serostatus. The studies used correlational designs as will future studies. However, future studies that incorporate controls for some of the more obvious confounding variables would be valuable. In conclusion, concern about AIDS among women is increasing. The epidemic has had a particularly devastating impact on impoverished African-American and Hispanic women of childbearing age. Several thousand women infected with HIV become pregnant each year. The reproductive decisions of these women will affect the scope of the pediatric HIV epidemic. The evidence suggests that HIV serostatus has no or little impact on their decisions. This conclusion is consistent with research on reproductive decisions among women who risk bearing a child with a genetic disorder. The literature on reproductive decision making in the context of HIV is relatively small. Clearly, more studies are needed. Such research should attempt to elucidate factors that mediate reproductive decisions in the context of HIV. The studies have done a better job of elucidating the numbers of women who decide to have an abortion than of clarifying the reasons for their decision. We know little about the social and psychological mechanisms that

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underlie these women’s reproductive decisions in the context of HIV. In addition, the literature lacked a theoretical focus. We offered a model based on the theory of planned behavior, but it is speculative given the paucity of relevant studies. Other theories may be applicable. For example, the health belief model (Rosenstock, 1990), social cognitive theory (Bandura, 1986,1989; O’Leary, 1985), and protection motivation theory (Rogers, 1983) would all seem to be relevant. Future research should also incorporate methodological refinements, including adequate control groups and controls for initial between-group differences. Clearly, our knowledge about reproductive decisions in the context of HIV will be greatly enhanced by more controlled theory-based empirical studies.

ACKNOWLEDGMENTS. Preparation of this manuscript was supported in part by grants R01-MH45668 and R01-MH52035 from the National Institute of Mental Health and U01-HD30145 from the National Institute of Child Health and Human Development to J.B.J. III.

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decisions among HIV-infected, drug-using women: The importance of mother-childcoresidence. Medical Anthropology Quarterly, 5, 153-169. Rogers, R. (1983). Cognitive and physiological processes in fear appeals and attitude change: A revised theory of protection motivation. In J. Cacioppo & R. Petty (Eds.), Social psychophysiology: A sourcebook (pp. 153-176).New York: Guilford Press. Rosenstock, I. M. (1990). The health belief model: Explaining health behavior through expectancies. In K. Glanz, F.M. Lewis, & B.K. Rimer (Eds.), Health behavior and health education: Theory, research, and practice (pp. 39-62). San Francisco: Jossey-Bass. Rosenthal, R. (1984). Meta-analytic procedures for social research. Beverly Hills: Sage. Schneck, M., Goode, L., Connor, E., Holland, B., Oxtoby, M., & Oleske, J. (1989). Reproductive history (HX) of HIV antibody positive (HIV+) women followed in a prospective study in Newark, NJ. Presented at the Fifth International Conference on AIDS, Montreal. Selwyn, P.A., Carter, R.J., Schoenbaum, E.E., Robertson, V.J., Klein, R.S., & Rogers, M.F. (1989). Knowledge of HIV antibody status and decisions to continue or terminate pregnancy among intravenous drug users. Journal of the American Medical Association, 261, 3567-3571. Sorenson, J.R., Scotch, N.A., Swazey, J.P., Wertz, D.C., & Heeren, T.C. (1987). Reproductive plans of genetic counseling clients not eligible for prenatal diagnosis. American Journal of Medical Genetics, 28, 345-352. Sunderland, A., Minkoff, H.L., Handte, J., Moroso, G., & Landesman, S. (1992). The impact of human deficiency virus serostatus on reproductive decisions of women. Obstetrics and Gynecology, 79, 1027-1031. Temmerman, M., Moses, S., Kiragu, D., Fusallah, S., Wamola, I.A., & Piot, P. (1990). Impact of single session post-parturn counseling of HIV infected women on their subsequent reproductive behavior. AIDS Care, 2(3), 247-252. Vermund, S.H., Galbraith, M.A., Ebner, S.C., Sheon, A.R., & Kaslow, R.A. (1992). Human immunodeficiency virus/acquired immunodeficiency syndrome in pregnant women. Annals of Epidemiology, 2, 773-803. Wiznia, A., Bueti, C., Douglas, C., Cabat, T., & Rubinstein, A. (1989). Factors influencing maternal decision making regarding pregnancy outcome in HIV infected women. Presented at the Fifth International Conference on AIDS, Montreal.

8

The Design, Participants, and Selected Early Findings of the HIV Epidemiology Research (HER) Study A Prospective Cohort Study of the Impact of HIV Infection on the Health of American Women Dawn K. Smith, Dora Warren, Liza Solomon, Paula Schuman, Michael Stein, Barbara Greenberg, and Janet S. Moore for the HER Study Group INTRODUCTION The first case of acquired immunodeficiency syndrome (AIDS) in a U.S. woman was reported in August, 1981 (CDC, 1981a), 2 months after the first cases were reported in men (CDC, 1981b). The initial description of clinical and epidemiologic characteristics of women infected with the human immunodeficiency virus DAWN K. SMITH and JANET S. MOORE • Division of HIV/AIDS Prevention, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, GA 30333. DORA WARREN • Division of Reproductive Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, GA LIZA SOLOMON • Department ofEpidemiology, School ofHygiene and Public Health, 30033. Johns Hopkins University, Baltimore, MD 21205. PAULA SCHUMAN • Division of Infectious Diseases, Department of Internal Medicine, Wayne State University School of Medicine, Detroit, MI 48201. MICHAEL STEIN • Division of General Internal Medicine, Rhode Island Hospital, Providence, RI 02903. BARBARA GREENBERG • Department of Epidemiology and Social Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY 10467. Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 185

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(HIV) was published in May, 1982 (Masur et al., 1982). The first longitudinal cohort study of persons with AIDS was established with a preexisting cohort of homosexual men in San Francisco originally assembled to assess the efficacy of hepatitis B vaccines (Jaffe et al., 1985). Then, in 1984 and 1985, after discovery of the virus (HIV) that causes AIDS and the development of an antibody test to detect its presence, two prospective cohort studies of homosexual men were established that included both HIV-infected men and men at risk of acquiring HIV infection, the San Francisco Men’s Health Study Piazza, 1986) and the Multicenter AIDS Cohort Study (Kaslow et al., 1987). These early studies have provided much of the information we have about the progression of HIV disease over time and its determinants. However, despite the appearance of women and injection drug users in the first year of the developing AIDS epidemic, it was not until 1985 that a longitudinal study of drug users in methadone treatment was established, with nearly 50% female participants (Selwyn et al., 1992) and in 1988, the AIDS Linked to Intravenous Drug Experience (ALIVE) study of street-recruited drug users, 19% of whom were women (Vlahov et al., 1991). By January, 1991, 15,493 AIDS cases had been reported among women. The number of women with AIDS increased to account for 11.5% of the adult cases reported January-December,1990 (CDC, 1991) as compared to 5.7% of cases reported in June, 1981-September,1982 (CDC, 1982). Data from studies of pregnant women, designed to assess determinants of HIV transmission to infants, were used to assess the effect of pregnancy on the health of infected women (Brettle & Leen, 1991). However, these studies often did not concurrently follow HIV-uninfected women and since there were important differences in socioeconomic status and risk behavior between the women in these studies and participants in the studies of homosexual men, it was increasingly difficult to determine if there were genderdependent issues other than pregnancy affecting HIV disease progression. Clinic-based studies and surveillance data suggested that mucosal candida infections were more common among HIV-infected women than HIV-infected men or HIV-uninfected women (Woads, Wright, Redfield, & Burke, 1987; Imam et al., 1990; Carpenter et al., 1991). Other studies suggested that cervical (human papillomavirus) HPV infection, cervical dysplasia, and/or invasive cancer were more prevalent among HIV-infected women than HIV-uninfected women (Feingold et al., 1990; Vermund et al., 1991). In addition, it was suggested that immunosuppression might be associated with more severe grades of dysplasia (Maiman et al., 1991; Schafer, Friedmann, Mielke, Schwartlander, & Koch, 1991) and with high rates of recurrent or persistent dysplasia following standard therapy (Maiman et al., 1990). Small, focused studies of select psychosocial and behavioral questions had been conducted. However, there were no longitudinal cohort studies designed to explore the psychological and behavioral effects of HIV on women over the course of their infection. Because of the increasing rates of HIV infection and AIDS in U.S. women

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and the need for a large, controlled cohort of women with which to prospectively determine the manifestations of HIV disease in women, the Centers for Disease Control and Prevention (CDC) established the first women’s “natural history” study, the HER Study in mid-1991. This chapter will describe the design and data collection methods of the HER Study and selected characteristics of HER Study women at their enrollment visit.

RECRUITMENT The HER Study (HERS) is being carried out at four institutions: Johns Hopkins School of Hygiene and Public Health, Baltimore, MD; Montefiore Medical Center, Bronx, NY; Brown University, Providence, RI; and Wayne State University School of Medicine, Detroit, MI. The study sites differ somewhat in the four cities. Active recruitment, screening, and enrollment of women began in April, 1993 and was completed in January, 1995. Methods for recruitment were tailored to the resources of each study site, but, at all sites, HIV-uninfected women were recruited over the same time period and from the same or comparable sources as the HIVinfected women. Eligibility criteria for enrollment in the HERS included: documented HIV status within the prior 60 days or consenting to HIV testing as part of eligibility screening, fluency in either Spanish or English, age of 16-55years, and reporting one or more of a list of HIV-risk behaviors. The risk behaviors assessed were chosen to facilitate recruitment of an uninfected cohort that was behaviorally comparable to the HIV-infected cohort. All women enrolled in the HERS were categorized as having either drug use risk or sexual risk for purposes of monitoring comparability of the cohorts during enrollment. Drug use risk was defined as having injected drugs at least once since 1985. Sexual risk was defined as either having sex with five or more partners in the past 5 years or ever having sex with a male IDU, having sex for money or drugs, or having sex with a man suspected or known to be HIV-infected. Exclusion criteria were: no identified HIV-risk behavior or risk only by transfusion history or birth to an HIV-infected woman, not born female (i.e., transsexual), or not consenting to the full protocol including pelvic exam, phlebotomy, and repeated HIV counseling and testing (for seronegative women). Because a primary study goal was to examine progression of HIV disease over time, women who reported previously having key AIDS-defining conditions [Pneumocystis carinii pneumonia (PCP), Kaposi’s sarcoma (KS), cryptococcal meningitis, toxoplasma encephalitis, cytomegalovirus (CMV) retinitis, lymphoma, MAI/MAC ( Mycobacterium avium intracellulare or complex), or candida esophagitis] were considered to be late in HIV infection and so ineligible for enrollment. At Wayne State, participants were primarily recruited by referral from HIV

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clinic providers, from an outpatient drug treatment facility for women, and from local HIV case management agencies. At Montefiore, participants were recruited by referral from HIV care providers, by responses to flyers and advertisement in local newspapers, and by word of mouth. At Brown, HER Study women were recruited by the Immunology Center and other HIV care providers, from previous research cohorts, and by drug treatment and prison medical care providers. At Johns Hopkins, participants were identified directly from the local community by advertising, street recruitment, and word of mouth with HIV testing and screening offered for possible enrollment. Since many more seronegatives were identified by serologic screening than were needed in the HERS, some women were placed on a waiting list from which eventual participants were selected by random methods or purposively to improve the demographic and behavioral risk factor balance between infected and uninfected participants enrolled. Overall, word of mouth was the most frequent response given by enrolled women (36.4%) when asked “How did you find out about this study?” (Table 1). Next most common was referral to the study by a woman’s health care provider (14.4%) or a social service organization (14.1%). There were site-specific differences, however. The two sites that are also clinical care sites (Detroit and Brown) had high rates of referral from clinicians and study staff (often clinic nurses). The two sites that are noncare research sites (Montefiore and Hopkins) had few women referred by medical providers and high rates of community referral by word of mouth. At the four sites, 1987 women were screened and 1316 (66%) women were enrolled in the HERS. Of women screened, 10% were ineligible, <1% were eligible but decided not to enroll, and 23% were eligible but not selected for participation. Sites recruiting from the community could not enroll all HIVuninfected women who were screened and eligible for the study. Instead, HIVuninfected women were randomly selected to participate in the study. Across

Table 1. Recruitment Sources Source

Montefiore

Detroit

“How did you find out about this study?” 12.0% Word of mouth 48.6% 2.0 Health care provider 31.4 Study staff 2.9 10.7 Newspaper 13.3 0.3 Service organization 16.8 22.7 HIV test site 0.3 0.3 Clinic 0.9 2.7 Other/unknown 15.2 19.9

Hopkins

67.4% 1.5 0.3 8.3 10.2 0.6 0.9 10.8

Brown

16.2% 24.3 29.9 3.2 7.8 0.6 2.3 15.7

All sites

36.4% 14.4 11.1 6.5 14.1 0.5 1.7 15.3

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the sites, retention rates of women returning for the third study visit range from approximately 70 to 90% of those enrolled.

CORE VISIT PROTOCOLS The core visit protocol for all women in the HERS includes a face-to-face interview, a physical exam, and specimen collection at 6-month intervals (Table 2). These core visits which are scheduled in advance are not carried out if women present on a non-HERS appointment day for evaluation or treatment of symptoms. Core Interviews During the usual core visit, women undergo an interview composed of six modules, the first four of which cover the prior 6-month history of (1) medical symptoms, illnesses, procedures, and medication access and use; (2) reproductive events, contraceptive intentions and use, and gynecologic symptoms, illnesses, and procedures; (3) insurance status, and sources, perceived need for, and utilization of medical, drug treatment, and social service care; (4) tobacco, alcohol, and drug use; and sexual behaviors with male and female partners. The fifth module is a brief psychosocial assessment of depressive symptoms, social support, beliefs about HIV/AIDS, life events, and loss and bereavement. The final interview module assesses current demographic parameters including: marital status, living situation, source and amount of income, and religious participation. Standardized interview forms are used at all sites. The interview questions were developed by study investigators, pilot tested, reviewed by Community Advisory Boards at the sites, and revised before the first core visits occurred. All interview forms were translated into Spanish (including back translation to check

Table 2.

HER Study Protocols: Core Visits

Core medical visit Comprehensive interview Physical exam (with pelvic exam) Specimen/test data collection Laboratory and skin tests Core psychosocial visit Comprehensive interview

CD4 <100 visits Brief interview Physical exam (without pelvic exam) Neuropsychological testing Laboratory tests Ophthalmologic exam Medical record abstraction All hospitalizations Select outpatient visits Select diagnostic procedures

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for adequacy of translation) and reviewed by Spanish-speaking interviewers at the sites prior to implementation. Physical Exam Following the interview, a physical exam is conducted which focuses on areas selected for potential importance to monitoring HIV disease progression and female-specific medical conditions. Assessment includes: height and weight, dermatologic findings, oropharyngeal exam, breast exam, lymph nodes, liver and spleen size, and a thorough pelvic exam. Physical exams are done by study clinical staff and investigators. The order of physical exam and variables measured are standard across the sites and recorded on a common form. Specimen/Test Data Collection At core visits, a variety of biological specimens are collected and tested or stored in repositories. Processing and storage of specimens is standard at all sites. At enrollment, laboratory measures done on site include: confirmation of HIV infection status, antigen skin tests for tuberculosis and functional immune status (PPD and anergy panel); urinalysis; complete blood count (CBC) with differential; lymphocyte immunophenotyping by flow cytometry; chemistry profile; and serology for syphilis. Blood is sent to central laboratories for hepatitis serology, herpes simplex virus serology, cytomegalovirus serology; and ß2-microglobulin levels (a marker of HIV disease progression). To provide for future laboratory studies of correlates of HIV disease progression and manifestations, blood samples are sent to the central repository at CDC for storage of cells, serum, and plasma from each woman at each core visit. During the pelvic/rectal exam, women are tested for sexually transmitted diseases (gonorrhea, chlamydia) and causes of vaginitis/vaginosis (trichomonas, yeast, bacterial vaginosis). Pap smears are performed at each visit. Abnormal Pap smears trigger referral for colposcopy at three sites and at the fourth all women have colposcopy done as part of the core pelvic exam. At the end of the pelvic exam, all women have a cervicovaginal lavage (CVL) done for HPV testing, assessment of leukocytosis, and sample repository at CDC. Swabs for yeast culture are obtained during oral, vaginal, and rectal exams on all women and positive cultures are sent to a central lab for speciation, DNA typing, and antifungal sensitivity testing. At core visits after baseline, many of these laboratory measures are repeated to determine change over time (e.g., CD4+ T-lymphocyte counts, HPV strains detected) and the incidence of clinical conditions (e.g., HIV seroconversion among initially HIV-uninfected women, cervical dysplasia). Central measurement annu-

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ally of HIV viral load for infected women has recently been added to the laboratory protocol. Psychosocial Interview A comprehensive psychosocial interview is conducted within 2-4weeks of the core medical visit. A panel of behavioral scientists working with other populations of women and HIV-infected cohorts was convened to advise HERS investigators in the development of a set of questions to be addressed in the HERS and to suggest appropriate instruments. Because the psychosocial interview addresses sensitive questions that may require special assessment and counseling skills to appropriately respond to the participant, this interview is conducted by specially qualified and trained interviewers at the sites. The interview includes assessments of psychological well-being/mood, sexual functioning/satisfaction, HIV effect on social roles, life events and concerns, coping style, social interaction and supports, relationship with current main partner, disclosure of HIV status, and attitudes/ beliefs about HIV/AIDS. CD4 <100 Visits For women with very low CD4+ T-lymphocyte counts (CD4 counts), the protocol was expanded to include midinterval visits. HERS investigators believe it important to see such women at more frequent intervals because the women are more likely to be changing residence for financial or health reasons and may have more medical conditions and hospitalizations to report. In addition, research questions specific to this population can be studied in a focused manner (e.g., incidence of early retinopathy associated with HIV or CMV infection). When women have had a CD4 count less than 100 cell/µ1, they are scheduled for study visits at the 3-month midpoint between biannual core visits. At these visits, a very brief medical history is obtained focusing on hospitalizations, outpatient procedures, HIV/AIDS-related diagnoses and symptoms, medications, illicit drug use, and performance of activities of daily living. A limited physical without a pelvic or rectal exam is performed. Then a neuropsychological screening battery is administered which includes: Color Trails 1 and 2, Verbal Fluency for first names, the 4 Word Memory Task, and the Grooved Pegboard. These measures were chosen because they test several of the components required for a diagnosis of HIV dementia (AAN Task Force, 1991) and are used successfully in minority and low-education populations. Centrally trained clinical staff administer these tests; neuropsychological specialists involved in HIV/AIDS research were consulted to determine appropriate pass/fail criteria. Women who fail the screening battery are referred for a full diagnostic evaluation. A blood culture for atypical mycobacterium infection is obtained and antibody titer to Toxoplasma gondii is

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determined. Finally, women are referred to collaborating ophthalmologists for a dilated eye examination. Participant Safety and Confidentiality Since provision of routine medical care is not part of the study protocol, all sites have developed systems for following up on clinically significant interview responses, exam findings, or laboratory results. In some cases, study investigators are also the care providers of participants needing clinical follow-up; in other cases, study women have given consent for notifying their care provider of findings indicating a need for treatment; and in other cases, appropriate referrals are made in consultation with the participant. All sites have obtained Public Health Service Certificates of Confidentiality to protect against access to study data gathered from HERS women by any non-HERS person or agency. Study data are stored in locked cabinets in locked rooms and no personal identifiers are included on data forms sent to the data management center or CDC. Medical Record Abstraction A signed medical release form to enable medical record abstraction (MRA) is obtained whenever hospitalizations, outpatient diagnostic procedures, or outpatient/ emergency room visits that generated HIV-related diagnoses are reported at any study visit. MRA forms were developed to capture information to allow: (1) description of causes of hospitalization, (2) documentation of causes of death, and (3) ascertainment of the Occurrence of AIDS-defining and HIV-related diagnoses. Many previous studies have relied only on hospital discharge data or patient self-report. HERS investigators laid out, a priori, specific clinical data required to define diagnoses of interest. These data and variables needed to answer the other research questions were then organized into MRA forms. Quality Control Interviewers from all sites received centralized training in administration of the interviews, nondirective probing, and postinterview review of the forms prior to initiation of the study. Additionally, retraining and problem solving are done on regular conference calls. Interviewers are observed during annual site visits, with psychosocial interviewers observed by a research psychologist. The quality control staff at the data management center assign each interviewer specific participant visits on which to tape interviews (with participant consent) for central evaluation of interviewer proficiency. Physical examiners also underwent centralized training in order to standardize sample collection procedures and diagnosis of clinical

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conditions, including the variations in dermatologic and oral conditions that occur in nonwhite persons. Separate, regular clinician conference calls are held for examiners, Medical record abstractors at the sites received centralized training with a senior abstractor experienced with HIV/AIDS records. Monthly conference calls are held with the abstractors by a committee of clinician-investigators to resolve any difficult abstraction questions and communicate decisions to all abstractors so that standard procedures will be followed. Data Management Data in the HER study is managed centrally at the New England Research Institute (NERI) in Watertown, MA. Hard copies of the data forms are stored locally and the originals mailed to NERI where data entry, edit resolution with site staff, database cleaning, and dataset generation and documentation are done. Selected central laboratory data are entered on site and electronically transferred to the data center. Data generated by substudies (noncore investigations) are managed at the sites or at CDC. Every 6 months, NERI provides an updated and documented SAS dataset for distribution to study sites. This dataset is used for analysis, internal review, presentation, and publication by study investigators.

SAMPLE CHARACTERISTICS AND EARLY FINDINGS The recruitment goals were 230 HIV-infected and 115 HIV-uninfected women per site, with reported IDU and sexual behavior risk equally frequent in each serostatus cohort. During the enrollment period, key characteristics of the uninfected and infected cohorts were monitored by study epidemiologists, statisticians, and investigators on a monthly basis. When imbalances were detected, recommendations were made to the site staff about increasing efforts to recruit women with specific underrepresented characteristics (e.g., uninfected injection drug users). While recognizing the importance of following sufficient numbers of uninfected women (controls) to be able to evaluate the role of HIV distinct from behavioral, demographic, and other factors, the emphasis of the HER Study was to obtain information about the course of HIV disease in infected women. Therefore, the decision was made to enroll two HIV-infected women for each uninfected woman. Demographics As can be seen in Table 3, recruitment goals were met and the uninfected cohort is behaviorally and demographically well matched to the infected cohort.

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Table 3.

Baseline Characteristics of HER Study Cohort-1 HIV+ women (N = 873) a

Demographics Median age Race % Black % White % Hispanic % Native American % Asian % Other Education: % < high school Income Median household Median per capita % < $12,000 Laboratory CD4 count 25th %ile 50th %ile 75th %ile Mean ß2-microglobulin % Syphilis serology+ % PPD+ % Anergic (candida, mumps, PPD) % Hepatitis B core Ab+ % HPV+ (PCR) % Bacterial vaginosis+ gram stain

HIV– women (N = 438) a

All HERS women (n = 1311)a

Stat. diff. b

ns

35.0

34.5

34.9

60.1 21.5 17.5 0.7 0.0 0.1 45.8

53.6 30.9 14.3 0.7 0.2 0.2 37.5

58.1 24.4 16.6 0.7 0.1 0.2 43.1

0.03

$9000 $3000 74.2

$9000 $3000 68.9

$9000 $3000 72.6

ns ns ns

234 377 581 3.5 8.6 5.7 51.9 58.2 63.9 50.8

839 1071 1320 2.1 5.4 8.4 16.9 42.8 28.3 44.4

ns

0.0001

7.5 6.7 38.5 52.9 51.8 48.3

0.0001 0.03 ns 0.001 0.0001 0.001 ns

Denominators vary slightly with missing data points from individual women. Statistical differences assessed by t -tes t for continuous variables and chi-square for categorical variables. ns = p > 0.05.

a b

Across all sites, 873 HIV-infected and 438 HIV-uninfected women were enrolled. The median age at enrollment was 35 years with 9% of women aged 16-25,71% aged 26-45, and 20% aged 46-55 years. Slightly more than half (58.1%) of the enrolled women are African American, nearly a quarter (24.4) are white, 17% are Latina, and 1% are Native American, Asian, or undetermined race/ethnicity. By responses from the baseline interview, the infected cohort had slightly more women who reported ever injecting drugs (59.7%) compared to uninfected women (54%). The only statistically significant imbalance in key demographic characteristics between the cohorts is in level of education. Forty-six percent of the HIV-infected women compared to 38% of the HIV-uninfected women had not

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graduated high school or received a GED. The financial poverty of these women is striking, reflected in both median household ($9000) and per capita ($3000) income reported. While the number of children born to HERS women was moderate (median = 2), more than a third of study participants had been surgically sterilized (tubal ligation or hysterectomy), more commonly infected (39.7%) than uninfected (31.6%) women. Early Findings Early findings reported here are from analyses of HERS baseline visit data analyzed at two time points. Data in the tables reflect summary analyses done on the essentially complete baseline data. Referenced analyses were done for presentations at several conferences in 1994 and 1995. These early presentations were conducted with then available data from approximately three-fourths of the baseline visits and some contain more detailed analyses than have yet been completed on the full baseline data. Biomedical Findings A major purpose of the preliminary analyses of baseline data was to examine the prevalence of HIV-related illnesses and conditions in women. The prevalence of vaginal and oral yeast and associated clinical disease were among the first clinical findings thought to be a special importance to women with HIV infection. In preliminary analyses from the HERS, vaginal yeast colonization was significantly more prevalent among HIV-infected (39%) compared to uninfected women (21%) (Cu-Uvin et al., 1995; Schuman, Sobel, et al., 1995). Candida albicans was the most frequently cultured fungal organism. Oral lesions were more frequently found in HIV-infected than uninfected women with frequencies and associated CD4 counts similar to those reported in cohorts ofHIV-infected men (Schuman, Greene, et al., 1995; Holmberg et al., 1995). Early in the study we examined the potential impact of HIV infection on the occurrence of a variety of bacterial infections using both patient report and laboratory testing data from the baseline medical visit. Prior episodes of sepsis, pneumonia, and sinusitis were more frequently reported by HIV-infected than uninfected women (Flanigan et al., 1995) as they have been in studies of men (Holmberg et al., 1995). Since urinary tract infections (UTI) are more common in women than men, it is important to determine the impact of HIV on the prevalence of UTI in women. The preliminary findings did not show a difference in the prevalence of high-grade bacteriuria (3.8%) by HIV status; bacteriuria was more frequent in HIV-infected and uninfected HERS women than has been described for the general population of women (Smith et al., 1995). In a study of cutaneous anergy, a measure of functional immunity, it was

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shown that anergy to all three of the antigens placed (candida, mumps, and PPD) was present in 52% of HIV-infected women and 14% of HIV-uninfected women but 62% of the “anergic” HIV-infected women responded to tetanus antigen (Klein, Flanigan, et al., 1995). The complete baseline data (Table 3) show similar rates of PPD positivity (6.7%) and anergy as were found in the preliminary analysis. A primary purpose of the HERS is to describe gynecologic manifestations of HIV infection. Invasive cervical cancer is the only female-specific AIDS-defining condition. HPV is a principal determinant in the development of cervical dysplasia and invasive cancer. HPV was detected by PCR in 65% of HIV-infected and 31% of uninfected women (Klein, Flanigan, et al., 1995). The detection of both specific HPV types and level of HPV viral activity may be critical to studies of coinfection with HPV and HIV and its impact on the development of and response to therapy for cervical dysplasia. Thus, determination of HPV by more than one laboratory measure is an important component of the study (Burk et al., 1994; Shah et al., 1995). While HPV was detected more frequently by PCR (58%) than by Southern blot (22.5%), in the infected women for whom Pap smear results were available, the prevalence of squamous intraepithelial lesions on Pap smear was higher when HPV was detected by Southern blot than when detected by PCR alone, perhaps because of a higher HPV viral load needed for detection by Southern blot (Klein, Shah, et al., 1995). In this cohort, traditional sexually transmitted diseases (gonorrhea, syphilis, and chlamydia) were infrequently detected at baseline. The most common gynecologic infections forboth HIV-infected and uninfected women were trichomoniasis (10 and 11%, respectively) and clinical bacterial vaginosis (31 and 34%) and their prevalence did not differ by HIV status (Cu-Uvin et al., 1995). In examining the complete baseline data, using the Nugent scoring system of vaginal Gram stains, 51% of HIV-infected women and 44% of uninfected women had scores indicative of bacterial vaginosis (Table 3) (Warren et al., 1995). The HER study offers an opportunity to evaluate the effect of injection drug use on the clinical manifestations of HIV. Preliminary results show few differences between women with a history of injection drug use and those reporting only sexual risk behaviors. However, after controlling for CD4 count, female injection drug users had lower platelet counts and women reporting only sexual risk reported a higher frequency of sinus infection (Vlahov et al., 1995). Health Care Findings Several studies have shown that women, minorities, and drug users receive recommended HIV-related medications less frequently than do white, homosexual males (Stein et al., 1991; Turner, Markson, McKee, Houchens, & Fanning, 1994). At the two HERS clinical care sites, high rates of “ever receiving antiretroviral

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therapy” were reported for HIV-infected women with CD4 counts <500 (81%) and those with counts <200 (100%) (Stein et al., 1995). At the two HERS sites that do not provide clinical care, rates of antiretroviral therapy or PCP prophylaxis were low. At Johns Hopkins, 28% of women with CD4 counts <200 reported taking neither antiretroviral medication nor PCP prophylaxis, and in New York, 46% reported currently taking neither (Solomon et al., 1995). Across all sites, the complete baseline data show that more than half (67.0%) of infected women with CD4 counts <500 had ever received AZT, ddI, or ddC while more than a third (41.5%) were taking an antiretroviral at the time of their enrollment into the HERS. Of infected women with CD4 counts <200,82.7% had ever used PCP prophylaxis with trimethoprim/sulfamethoxazole, dapsone, or pentamidine while only 53.3% were receiving prophylaxis when interviewed. Behavioral and Psychosocial Findings In addition to describing the biomedical manifestations of HIV infection in women, the HER Study was designed to examine behavioral and psychosocial impacts of HIV on participants. High levels of social stress and emotional distress were found both in the HIV-infected and in the uninfected, at-risk women. Mean scores on the CES-D (Center for Epidemiologic Studies-Depression Scale), a measure of depressive symptomatology, were approximately 20 for both HIVinfected and uninfected women with over half of both groups scoring 16 or above, the cutoff score for clinically significant depressive disorder (Moore et al., 1995). Depressive symptomatology was related to life-style factors including stressful life events, drug use, and sexual behavior, but was unrelated to HIV status. Among the infected women, after controlling for CD4 count, age, race, and drug use, women were least depressed when they had a confidant with whom they could talk about HIV and did not make efforts to conceal their HIV status from others (Clark et al., 1994). On measures of stressful life events, a majority of HIV-infected (54%) and uninfected (62%) women reported insufficient money in the past year to pay for necessities such as food and shelter. In the year prior to baseline interview, 16% of infected women and 22% of uninfected women reported no safe place to live, 10 and 11% respectively reported being physically attacked or raped, and 6 and 10% had their children removed from the home. Stressful life events were reported more frequently by HIV-uninfected women than infected women, and for both groups were associated with injection drug use, crack use, and high numbers of sexual partners (Moore et al., 1995). Similar rates were found in analysis of the complete baseline data (Table 4). Among HIV-infected women, more than a third had a family member with HIV infection, and among this third, the other infected family member was most commonly a sibling (34% of the third with infected family members or about 12% of all infected women), a cousin/aunt/uncle/niece/nephew/in-law (34%), or a

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Table 4.

Baseline Characteristics of HER Study Cohort-2

Psychosocial % CESDc score > 16 % No safe place to live (past year) % Physically attacked/raped (past year) % Children taken away (past year) % HIV+ parent % HIV+ sibling % HIV+ child Median no. of live births % Surgically sterilized Behavioral % Ever IDU % IDU in past 6 months % Other drug use in past 6 months Male sex partners in past 6 months % with 0 % with 1-10 % with > 10 % always use condoms % Ever sex with female % With female sex partner (past 6 months) % Ever used antiretroviralsd % Now using antiretroviralsd % Ever used PCP prophylaxis e % Using PCP prophylaxis nowe

HIV+ women (N = 873)a

HIVwomen (N = 438)a

All HERS women (n = 131 1)a

Stat. diff. b

59.2 19.0 9.0 5.4 1.8 12.8 5.7 2 39.7

58.2 22.3 13.4 10.4 2.4 10.1 0.5 2 31.6

58.6 20.2 10.7 7.0 2.0 11.8 3.9 2 37.0

ns ns 0.03 0.001 ns ns 0.001 ns 0.005

59.7 25.2 47.8

54.9 26.4 61.6

58.1 25.6 52.5

ns ns 0.001

26.8 72.0 1.2 40.3 18.5 6.2 67.0 41.5 82.7 53.3

15.4 80.7 3.9 20.9 23.5 10.1

0.001 33.8 20.2 7.6

0.001 ns ns

Denominators vary slightly with missing data points from individual women. Statistical differences assessed by t -test for continuous variables and chi-square for categorical variables. ns = p > 0.05. c Center for Epidemiologic Studies-Depression Scale. d Of 364 women with CD4 count < 500. e Of 75 women with CD4 count < 200.

a b

husband (29%). Sixteen percent of those with infected family members had an infected child (6% overall). A quarter of these women had more than one family member with HIV infection (Fiore et al., 1995). These proportions did not change significantly when analysis of the entire cohort was possible. Thirteen percent of HIV-infected and ten percent of uninfected women reported a sibling with HIV infection (more commonly a brother than a sister); 6% of HIV-infected women reported an HIV-infected child; and 2% of both infected and uninfected women reported that their mother or father was infected with HIV. In an interview substudy conducted at two HERS sites, both HIV-infected and

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uninfected women reported high needs for a variety of legal services. Only for legal assistance in making a will did HIV-infected women report greater legal service need than uninfected women (Klein, Dubler, DiStabile, & Solomon, for the HER Study Group, 1995). Sexual Behavior Analysis of reports of sexual behavior by HERS participants indicated that 18% of women had been abstinent during the 6 months prior to enrollment, with HIV-infected women 2.8 times more likely than uninfected women to report abstinence. In terms of self-identified sexual orientation, 89% of HIV-infected women identified as heterosexual/straight, 5% as bisexual, and 6% as lesbian (all of whom reported HIV infection through past injection drug use, heterosexual contact, or both). Similar rates were found for the uninfected women. Among sexually active women who self-identified as heterosexual or bisexual, all reported sex with a male partner. Similarly, all women who self-identified as lesbian reported having sex with a female partner. However, among women identifying as lesbian, 18% of infected women and 8% of the uninfected women reported having sex with a male partner in the past 6 months (Zierler et al., 1995). Of women having sex with male partners, 53% of HIV-infected and 23% of uninfected women reported that their partners always used condoms. Women’s HIV status was the strongest predictor of always using condoms, and among the uninfected women, drug, alcohol, and nonbarrier contraceptive use were predictors of never using condoms (Schoenbaum, Moore, Schuman, Stein, & Warren, 1995). In the complete baseline data set, rates of “always condom use” were somewhat lower for the HIV-infected women than in the preliminary analysis, but HIV-infected women continued to be much more likely to report consistent condom use in the prior 6 months than were HIV-uninfected women. HIV-infected women and their male partners may not use condoms for a number of reasons including (1) desire to become pregnant, (2) the male partner is already HIVinfected, and (3) the male partner is unwilling to use a condom. These issues are explored in follow-up interviews with HERS participants. Sex with high numbers of male partners was infrequent for both groups of women. Drug Use In the complete baseline dataset, more than half of the women report ever injecting drugs (58.1%) and a quarter (25.6%) had done so in the 6 months prior to enrollment in the HERS. Recent noninjection use of illicit drugs and/or methadone was reported by approximately half of all HERS participants and more commonly among uninfected (61.6%) than infected women (42.8%). Given these high rates of

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lifetime and recent injection drug use, it is not surprising that half of the women also have laboratory evidence of past hepatitis B infection (Table 3).

FUTURE PLANS In addition to the core protocols, the HERS will have completed six substudies (Table 5) by the fall of 1995: (1) a study of women’s reported legal needs and access to legal services, (2) a flow cytometric study of surface activation markers on CD8+ T lymphocytes from HIV-infected women, (3) an investigation of TH1 and TH2 cytokine production and its relationship to candidiasis and skin test antigen response, (4) a study of sexual and reproductive decision-making, (5) a study of the determinants of condom use, and (6) an assessment of nutritional status, including vitamin and micronutrient assays in 600 women. A health care utilization substudy at one site, cofunded by the Agency for Health Care Policy and Research (AHCPR), is ongoing for an additional year. Four additional substudies began in Fall of 1995: (1) a study of menstrual cycling among women at all HERS sites, (2) a study of cervical HIV shedding over the menstrual cycle, (3) a study of HIV-specific immune responses in uninfected women with frequent sexual and/or IDU exposure to HIV, and (4) determination of HLA type I and type II phenotypes in enrolled women. In mid-1993, the National Institute of Allergy and Infectious Diseases (NIAID) established our sister study, the Women’s HIV Interagency Study (WIHS). HERS and WIHS have collaborated closely at all levels, including holding joint meetings of our Executive Committees, using NERI as a data management contractor (with cofunding by NIAID and CDC), and planning joint substudies and analyses. Even before WIHS enrollment is complete, the sister studies have begun joint research activities (e.g., the menstrual cycle substudy). The fifth HERS substudy has been funded by the National Institute on Drug Abuse (NIDA) and has three components, all of which compare HIV-infected women with active IDU and those with no drug use history. The three components are: an assessment of the virologic correlates of disease progression, measures of the Table 5. HERS Substudies Perceived legal needs CD8+ activations markers Cytokine production and candidiasis Sexual and reproductive decision-making Determinants of condom use Nutritional status

Health care utilization (AHCPR) Menstrual cycling (with WIHS) HIV cervical shedding Exposed and uninfected women HLA alleles Drug use effects on HIV disease (NIDA)

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immunologic consequences of IDU, and (jointly with the WIHS) study of the effects of IDU on health care utilization.

DISCUSSION The design and population features of the HERS provide a unique and comprehensive approach to the study of HIV infection in women. The HERS has identified and enrolled a large number of HIV-infected women as well as a cohort of uninfected women behaviorally and demographically well-matched. Women were enrolled in multiple cities, across a wide age range, and without regard to their fertility or pregnancy status. The HERS participants report a variety of behaviors associated with the risk of HIV acquisition and the study includes nondrug users, ex-users in treatment/recovery, and both injection and noninjection drug users. Sufficient numbers of African-American, Latina, and white women are included to permit valid subanalyses of racial, ethnic, and cultural factors that may be related to HIV disease manifestations and/or progression. Study women are being followed prospectively with comprehensive measures of psychological, social, and biological parameters, including documentation of clinical outcomes by extensive medical record abstraction as well as participant reports. The study protocols have been developed and implemented with the support and expertise of new and experienced investigators from several universities, federal agencies, and other HIV/AIDS cohort studies. Wave 7 of data collection began in April 1996. The success in recruitment and retention of this multisite cohort of women and the early findings of the HERS strengthen the commitment of its investigators to understand more fully the biomedical, social, and emotional effects of the HIV epidemic on infected women and those engaged in behaviors that put them at high risk of infection.

HER STUDY GROUP Brown University: Charles Carpenter, M.D., Kenneth H. Mayer, M.D.; Johns Hopkins School of Public Health and Hygiene: Liza Solomon, Dr.P.H., David Vlahov, Ph.D.; Montefiore Medical Center: Ellie Schoenbaum, M.D., Robert Klein, M. D.; Wayne State University School of Medicine: Paula Schuman, M.D., Jack Sobel, M.D.; Centers for Disease Control and Prevention: Ann Duerr, M.D., Ph.D., M.P.H., Scott Holmberg, M.D., M.P.H., Janet Moore, Ph.D., Bert Peterson, M.D., Dawn K. Smith, M.D., M.S., M.P.H., Dora Warren, Ph.D., M.P.H.; National Institute ofAllergy and Infectious Diseases: Lewis Schrager, M.D.; New England Research Institute: Sonja McKinlay, Ph.D.

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ACKNOWLEDGMENTS. The women enrolled in the HER Study; the Community Advisory Boards at the four sites; the study staff, especially our site coordinators past and present: Susan Barkan, Frances Bettencourt, Barbara Dominick, Terry Fiore, Chris Garack, Debra Jones, Hollie Malamud, Diane Morales, Betty Robinson, Judy Silberstein, Anne Spevak, and Alvaro Tinajero; our coinvestigators: Jean Anderson, Bob Boland, Lundy Braun, Carl Christensen, Leslie Clark, Susan CuUvin, Penny Demas, Paul Fidel, Tim Flanigan, Alice Gleghorn, Wayne Lancaster, Alvaro Muñoz, Jeffrey Peipert, Karen-Marie Scott, and Sally Zierler; laboratory scientists Bill Brown, Robert Burk, Rafael Harpaz, Nicola Kouttab, Mike Long, Joe Margolick, Ralph Richart, Charles Schable, Scott Schmid, Keerti Shah, and John Stewart; data managers Irene Doherty, Karen Manning, Suzanne Ohmit, Marlene Smurzynski, Foss Tighe, and Qui-Ying Zhou; and others closely involved in the design and early implementation of the HER Study: Jane Carrington, Tricia Forde, Leslie Kalish, Sandra Melnick, Martha Rogers, Lucille Stonis, and Sten Vermund.

REFERENCES American Academy of Neurology AIDS Task Force. (1991). Nomenclature and research case definitions for neurologic manifestations of human immunodeficiency virus-type 1 (HIV-1) infection. Neurology, 41, 778-785. Brettle, R. P., & Leen, C. L. S. (1991). The natural history of HIV and AIDS in women. AIDS, 5,12831292. Burk, R. D., Tachezy, R., Daniels, R., Warren, D., Lewis, R., Klein, R. S., Duerr, A., HER Study Group, & Shah, K. (1994). Interlaboratory comparison of HPV DNA detection by PCR and correlation with Southern blot. Abstracts ofthe 23th International Papillomavirus Conference (Abstract No. 45), Amsterdam. Carpenter, C. C., Mayer, K. H., Stein, M. D., Leibman, B. D., Fisher, A., & Fiore, T. C. (1991). Human immunodeficiency virus infection in North American women: Experience with 200 cases and a review of the literature. Medicine (Baltimore), 70, 307-325. Centers for Disease Control. (1981a). Follow-up on Kaposi’s sarcoma and Pneumocystis pneumonia. Morbidity and Mortality Weekly Report, 30, 409-410. Centers for Disease Control. (1981b). Pneumocystis pneumonia—Los Angeles. Morbidity and Mortality Weekly Report, 30, 250-252. Centers for Disease Control. (1982). Update on acquired immune deficiency syndrome (AIDS) United States. Morbidity and Mortality Weekly Report, 31, 507-514 Centers for Disease Control. (1991, January). HIV/AIDS surveillance report (pp. 1-22). Centers for Disease Control. (1995, January). HIV/AIDS surveillance report. Clark, L., Schoenbaum, E., Solomon, L., Schuman, P., Fiore, T., & Moore, J., for the HER Study Group. (1994). Concealment of HIV infection and psychological distress. Abstracts ofthe Annual Meeting of the American Psychological Association, Los Angeles. Cu-Uvin, S., Warren, D., Mayer, K., Peipert, J., Anderson, J., Klein, R. S., Schoenbaum, E., Holmberg, S., Schuman, P., & Vlahov, D., for the HER Study Group. (1995). Prevalence of genital tract

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infections in HIV infected women. Abstracts of the HIV Infection in Women Conference (Abstract No. FC1-178), Washington, DC. Feingold, A. R., Vermund, S. H., Burk, R. D., Kelley, K. F., Schrager, L. K., Schreiber, K., Mundk, G., Friedland, G. H., & Klein, R. S. (1990). Cervical cytologic abnormalities and papillomavirus in women infected with human immunodeficiency virus. Journal of Acquired Immune Deficiency Syndromes, 3, 896-903. Fiore, T. C., Lingle, L., Flanigan, T. P., Gormely, J., Schuman, P., Schoenbaum, E., Solomon, L., & Moore, J., for the HER Study Group. (1995). HIV infection in the families of HIVpositive women. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-337), Washington, DC. Flanigan, T. P., Mayer, K., Smith, D., Schoenbaum, E., Vlahov, D., Schuman, P., & Holmberg, S., for the HER Study Group. (1995). Self-reported bacterial infections in HIV+ and high-risk HIV– women. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-421), Washington, DC. Holmberg, S. D., Buchbinder, S. P., Conley, L. J., Wong, L. C., Katz, M. H., Penley, K. A., Hershow, R. A., & Judsone, F. N. (1995). The spectrum of medical conditions and symptoms before acquired immune deficiency syndrome in homosexual and bisexual men infected with the human immunodeficiency virus. American Journal of Epidemiology, 141, 395-404. Imam, N., Carpenter, C. C., Mayer, K. H., Fisher, A., Stein, M., & Danforth, S. B. (1990). Hierarchical pattern of mucosal candida infection in HIV-infected women. American Journal of Medicine, 89(2), 142-146. Jaffe, H. W., Darrow, W. W., Echenberg, D. F., O’Malley, P. M., Getchell, J. P., Kalyanaraman, V. S., Byers, R. H., Drennan, D. P., Braff, E. H., Curran, J. W., & Francis, D. P. (1985). The acquired immune deficiency syndrome in a cohort of homosexual men: A six year follow-up study. Annals of Internal Medicine, 103, 210-214. Kaslow, R. A., Ostrow, D. G., Detels, R., Phair, J. P., Polk, B. F., & Rinaldo, C. R., for the Multicenter AIDS Cohort Study. (1987). The Multicenter AIDS Cohort Study: Rationale, organization, and selected characteristics of the participants. American Journal of Epidemiology, 126, 310-318. Klein, R. S., Dubler, N., DiStabile, P., & Solomon, L., for the HER Study Group. (1995). Self-reported legal needs of women at risk for HIV infection. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-335), Washington, DC. Klein, R. S., Flanigan, R., Vlahov, D., Schuman, P., & Smith, D., for the HER Study Group. (1995). Cutaneous anergy in woman at risk for HIV infection. Abstracts of the Second National Conference on Human Retroviruses and Related Infections (Abstract No. 583), Washington, DC. Klein, R. S., Shah, K., Cu-Uvin, S., Schuman, P., Solomon, L., Warren, D., & Burk, R. D., for the HER Study Group. (1995). Genital human papillomavirus (HPV) infection and squamous intraepithelial lesions (SIL) on Pap smear in women at risk for HIV infection. Abstracts of the Second National Conference on Human Retroviruses and Related Infections (Abstract No. 195), Washington, DC. Maiman, M., Fruchter, R. G., Serur, E., Remy, J. C., Feuer, G., & Boyce, J. (1990). Human immunodeficiency virus infection and cervical neoplasia. Gynecologic Oncology, 38, 377-382. Maiman, M., Tarricone, N., Vieira, J., Suarez, J., Serur, E., & Boyce, J. C. (1991). Colposcopic evaluation of human immunodeficiency virus seropositive women. Obstetrics and Gynecology, 78, 84-88. Masur, H., Michelis, M. A., Wormser, G. P., Lewin, S., Golkd, J., Tapper, M. L., Giron, J., Lerner, C. W., Armstrong, D., Setia, U., Sender, J. A., Siebken, R. S., Nicholas, P., Arlen, Z., Maayan, S., Ernst, J. A., Siegel, F. P., & Cunningham-Rundles, S. (1982). Opportunistic infection in previously healthy women: Initial manifestations of a community-acquired cellular immunodeficiency. Annals of Internal Medicine, 97, 533-539. Moore, J., Solomon, L., Schoenbaum, E., Schuman, P., Boland, B., & Smith, D. (1995). Factors

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associated with stress and distress among HIV-infected and at-risk women. Abstracts of the HIV Infection in Women Conference (Abstract No. TA2-114), Washington, DC. Piazza, T. (1986). Sampling methods and wave Ifield results of the San Francisco Men's Health Study. Report to the National Institute of Allergy and Infectious Diseases (pp. 1-23). Rhoads, J. L., Wright, C., Redfield, R. R., & Burke, D. S. (1987). Chronic vaginal candidiasis in women with human immunodeficiency virus infection. Journal of the American Medical Association, 257, 3105-3107. Schafer, A., Friedmann, W., Mielke, M., Schwartlander, B., & Koch, M. A. (1991). The increased frequency of cervical dysplasia-neoplasia in women infected with the human immunodeficiency virus is related to the degree of immunosuppression. American Journal of Obstetrics and Gynecology, 164, 593-599. Schoenbaum, E. E., Moore, J., Schuman, P., Stein, M., & Warren, D. (1995). Patterns of condom use in HlV infected and HIV uninfected women. Abstracts of the HIV Infection in Women Conference (Abstract No. WE-379), Washington, DC. Schuman, P., Greene, V., Klein, R. S., Solomon, L., & Mayer, K., for the HER Study Group. (1995). Oral lesions in women at risk for HIV infection. Abstracts of the Second National Conference on Human Retroviruses and Related Infections (Abstract No. 584), Washington, DC. Schuman, P., Sobel, J. D., Mayer, K., Klein, R. S., Solomon, L., Smith, D., Warren, D., & Duerr, A., for the HER Study Group. (1995). Candida colonization in women at risk for HIV infection. Abstracts of the HIV Infection in Women Conference (Abstract No. FC1-176), Washington, DC. Selwyn, P. A., Alcabes, P., Hartel, D., Buono, D., Schoenbaum, E. E., & Klein, R. S. (1992). Clinical manifestations and predictors of disease progression in drug users with human immunodeficiency virus infection. New England Journal of Medicine, 327, 1697-1703. Shah, K. V., Burk, R., Klein, R., Daniel, R., Cruz, Y., Astemborski, J., Braun, L., Schuman, P., & Duerr, A., for the HER Study Group. (1995). Prevalence of genital human papillomavirus (HPV) infections by two detection methods in women at risk for HIV. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-366), Washington, DC. Smith, D. K., Schoenbaum, E. E., Peipert, J., Sobel, J., & Nelson, K., for the HER Study Group. (1995). Prevalence of bacteriuria among HIV+ and HIV– women. Abstracts of the HIV Infection in Women Conference (Abstract No. FC1-179), Washington, DC. Solomon, L., Stein, M., Schoenbaum, E., Moore, J., Holmberg, S., & Schuman, P., for the HERS Study Group. (1995). Use of health care and antiretroviral medication among women in Baltimore and New York. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-397), Washington, DC. Stein, M. D., Piette, J., Mor, V., Wachtel, T. J., Fleishman, J., Mayer, K. H., & Carpenter, C. C. (1991). Differences in access to zidovudine (AZT) among symptomatic HIV-infected persons. Journal of General Internal Medicine, 6(1), 35-40. Stein, M., Schuman, P., Solomon, L., Schoenbaum, E., Mayer, K., & Moore, J. (1995). Patterns of antiretroviral use among women in Providence and Wayne State. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-309), Washington, DC. Turner, B. J., Markson, L. E., McKee, L. J., Houchens, R., & Fanning, T. (1994). Health care delivery, zidovudine use, and survival of women and men with AIDS. Journal of Acquired Immune Deficiency Syndromes, 7, 1250-1262. Vermund, S. H., Kelley, K. F., Klein, R. S., Feingold, A. R., Schreiber, K., Munk, G., & Burk, R. D. (1991). High risk of human papillomavirus infection and cervical squamous intraepithelial lesions among women with symptomatic human immunodeficiency virus infection. American Journal of Obstetrics and Gynecology, 165, 392-400. Vlahov, D., Anthony, J. C., Muñoz, A., Margolick, J., Nelson, K. E., Celentano, D. D., Solomon, L., & Polk, B. F. (1991). The ALIVE Study: A longitudinal study of HIV-1 infection in intravenous drug users: Description of methods. The Journal of Drug Issues, 21, 759-776.

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Vlahov, D., Schoenbaum, E., Smith, D., Schuman, P., Carpenter, C., & Holmberg, S. (1995). Clinical findings of HIV infected women by risk group. Abstracts of the HIV Infection in Women Conference (Abstract No. WP-396), Washington, DC. Warren, D., Klein, R. S., Anderson, J., Cu-Uvin, S., Sobel, J., Schuman, P., Holmberg, S., Duerr, A., & Brown, W. (1995). Bacterial vaginosis in women at risk for HIV infection. Abstracts of the 35th International Conference on Antimicrobial Agents and Chemotherapy (Abstract No. K96), San Francisco. Zierler, S., Stein, M., Schoenbaum, E., Solomon, L., Schuman, P., & Moore, J., for the HER Study Group. (1995). Comparison of women’s sexual activity according to HIV serostatus. Abstracts of the HIV Infection in Women Conference (Abstract No. FF1-192), Washington, DC.

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For Whose Benefit? Women and AIDS Public Policy Kathleen A. Ethier, Jeannette R. Ickovics, and Judith Rodin ... the only public good is that which assures the private good of the citizens .... —Simone de Beauvoir (1908-1986)

At the end of the first decade of the AIDS epidemic there has been a general consensus that the U.S. government has failed in its policy approach to this health crisis. In its final report, the National Commission on AIDS (1993) cited an “appalling lack of frank discussion about the epidemic at all levels of national leadership’’ which “fostered a woefully inadequate response, yielding death and suffering well in excess of what might have been.” It has only recently become apparent to scientists, advocates, and politicians that this inadequate response has been particularly detrimental to women at risk for HIV and those already infected. Both the National Research Council (Miller, Turner, & Moses, 1990) and the Congressional Caucus on Women’s Issues (Schroeder & Snowe, 1990) stated that women and AIDS must be a priority for the 1990s. The numbers of women, and women of color in particular, becoming infected with HIV continue to grow at very high rates. In 1984, women represented 6.4% of all reported AIDS cases (Centers for Disease Control and Prevention [CDC], 1985). In 1995, women comprised 17.4% of all new cases and 13.8% of the total number of reported cases (CDC, 1995). More than 64,000 women have been diagnosed with AIDS, and it is estimated that the number infected with HIV is ten times higher. Moreover, if the CDC included in their definition of AIDS the full

KATHLEEN A. ETHIER • Department of Psychology, Yale University, New Haven, CT 065208205. JEANNETTE R. ICKOVICS and JUDITH RODIN • Departments of Psychology and Internal Medicine, Yale University, New Haven, CT 06520-8205. Present address for J. R. • Office of the President, 121 College Hall, University of Pennsylvania, Philadelphia, PA 19104-6380. Women and AIDS: Coping and Care, edited by Ann O’Leary and Loretta Sweet Jemmott. Plenum Press, New York, 1996. 207

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range of gynecological complications that women with HIV experience, these reported numbers would be substantially higher still (Anastos & Marte, 1991). Despite the growing number of women with HIV and AIDS, women have been less likely to be targeted for prevention programs than men at risk for HIV, have had less access to health care and drug treatment, and have been less likely to be included in research on HIV/AIDS and clinical drug trials. For much of the early epidemic women with HIV were seen mainly as vectors of transmission to others (e.g., mother to child, prostitute to client), which has limited attention to women’s own health needs. In this chapter, we will broadly discuss the public policy issues relevant to women at risk for or infected with HIV/AIDS. Overall, we will try to answer the following questions: What are the current policies regarding women with HIV/ AIDS? Do these policies meet the needs of women with HIV/AIDS and those most at risk for HIV? If not, what modifications are required to meet women’s needs? It is important to remember throughout this chapter that public policy, particularly around HIV, changes rapidly. We have tried to give a broad picture of overall public policy as it pertains to women with HIV and to also include measures that are currently being considered (through March, 1996). The results of AIDS Clinical Trial Group Trial 076 has had a major impact on public policy concerning women with HIV. This double-blind, randomized clinical trial of pregnant women provided strong support for the use of a regimen of AZT (Zidovudine) administered to the mother during pregnancy and childbirth and to the newborn for 6 weeks after birth to prevent vertical transmission of HIV from mother to child (Conner et al., 1994). This treatment reduced rates of infection in the infants under study by 67%; 8.3% of the infants born to women receiving AZT were infected with HIV versus an infection rate of 25.5% in the infants born to women receiving placebo. As a result, the Public Health Service released guidelines regarding the universal counseling and voluntary testing of all pregnant women and recommending the use of AZT during pregnancy (U.S. Public Health Service/Centers for Disease Control and Prevention, 1995). Many states, as well as the federal government, are considering legislation regarding counseling and testing for pregnant women; some states have already adopted such legislation. The results of this clinical trial are very promising for reducing the transmission of HIV to children. At the same time, the study raises important and difficult ethical questions regarding women’s health (e.g., Bayer, 1994; De Roo & Colebunders, 1994; Hoffman & Munson, 1995; Lancet, 1994). This example highlights all of the issues that we will discuss in this chapter: HIV prevention, HIV counseling and testing, access to care, and women’s inclusion in research. A main concern throughout this chapter is whether women benefit from current U.S. government policies.* It must be acknowledged that women, in *This chapter focuses on U.S. policy. Women in the developing world, who have HIV at substantially higher rates, likely have even less political protection and less political power.

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general, are at economic, political, and social disadvantage in our society; women at risk for HIV and those with HIV/AIDS are particularly disadvantaged. This disadvantage is reflected in policies concerning HIV. Until recently, women with HIV have not had the same kind of advocacy that has been effective for gay men. As a result, the policies enacted often have not been developed to benefit women with HIV, but rather to benefit others (e.g., their children or partners, service providers, federal/state governments).

HIV PREVENTION In the absence of a vaccine or cure, HIV prevention is absolutely critical. Since the beginning of the AIDS epidemic, community agencies and researchers have developed prevention programs in an attempt to reduce high-risk behavior among those especially at risk for HIV. However, given the increasing rates of women with HIV, these prevention strategies are obviously not working for women or are not reaching women. Lack of research makes it difficult to understand where prevention programs are ineffective. When programs are developed, the research that does exist is often not utilized. This may occur partly because HIV prevention research with women is very recent: most has been published since 1989. There have been few empirically based reports specific to women and HIV prevention published in major public health or medical journals, making that which does exist more difficult to find. Because we know the ways in which HIV is most often transmitted—sharing needles with an infected person and having unprotected sexual contact with an infected partner—we also know how to prevent transmission. Despite this knowledge and the number of lives that continue to be threatened, prevention efforts have been hindered by public policy. As a nation, we have failed to develop any comprehensive plan for even attempting to prevent the AIDS epidemic (Rogers, 1992). According to June Osborn (1991), former director of the National Commission on AIDS, “pseudo-moralists” have imposed restrictions on the public discourse regarding HIV prevention. “They shout their concerns that in giving names to widespread risk behaviors we might seem to condone [them]. But look what horrors we condone if we acquiesce with silence“ (p. 367). This silence is a vacuum in which information about how to effectively clean injection equipment is not discussed, and where sterile needles are not provided to those who use injection drugs. Needle exchange programs appear to be one of our most effective prevention tools. A review by the General Accounting Office (1993) concluded that clients of needle exchange programs do not increase drug use and do decrease risky behavior. Currently, legal needle exchange programs are operating in a limited number of cities. In New Haven, CT, investigators reported that the program resulted in a significant decline in the percentage of syringes testing

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positive for HIV among needle exchange clients, often served as an entry point for drug treatment, and did not result in an increase of drug use (Heimer, Kaplan, Khoshnood, Jariwala, & Cadman, 1993; Kaplan, 1991). Especially in the context of a severe shortage of drug treatment slots, prevention programs including needle exchange are absolutely essential to fill the gap. Despite consistent data in support of needle exchange and strong support from scientists and advocates, the federal government as well as most state and local governments oppose legalizing needle exchange for fear it will encourage increased drug use. Political and moral arguments also have resulted in restrictions on providing sexually explicit information in government-funded prevention programs, limiting widespread prevention efforts and media campaigns. Condom availability programs in most public schools have been prohibited, and have left in their wake conservative backlash and sharp political controversy. Understanding the sexual behavior of adolescents and young adults has been further restricted by political constraints on research prohibiting sexually-explicit inquiry (Gardner & Wilcox, 1993). The Bush administration went so far as to cancel two national surveys of sexual behavior after they had been approved and funded through the peer-review process (Hilts, 1991; Steinberg, 1994). Congress restricted federal funding of these studies; a smaller version of one study was completed with private funding. A study of adolescent health is currently being conducted which contains questions concerning sexual behavior; however, this study is not connected in any way to the canceled study (National Institute of Child Health and Human Development, 1995, personal communication). In addition to behavioral science and behavioral interventions, there has also been a lag in technological development regarding HIV prevention among women (see Gollub, 1995, for review). Currently, condoms are the only physical barrier promoted to prevent the sexual transmission of HIV and other sexually transmitted diseases—and condom use is obviously not a prevention tool that women can use independently (i.e., some negotiation between partners must occur). Stein (1990) argues that to empower women, we must provide the tools with which they can protect themselves such as vaginal virucides and microbicides as well as femalecontrolled barrier methods. Female condoms have been introduced in some areas, and response to them has been mixed. As with many of the issues around HIV, women may be at even greater risk than men as a result of the lack of effective prevention programs and technologies. For example, male-to-female sexual transmission of HIV may be as much as 12 times more efficient than female-to-male transmission (Padian, Shiboski, & Jewell, 1991). Incidence of sexually transmitted disease is related to higher risk of HIV for women (Aral & Wasserheit, 1995). In addition, drug treatment and needle exchange programs are less available to women than men (Weissman & Brown, 1995). This highlights the critical need for prevention programs targeted to women.

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Rather than assuming that prevention messages that have been successful with men will work for women, we need to look at the basic differences in the lives of women and men most at risk for HIV cultural barriers to condom use, some women’s lack of power in sexual relationships, and economic and social inequities that may make it difficult for women to put prevention measures into practice. It is also important to acknowledge the differences among women at risk for HIV; prevention models must recognize their diversity (e.g., as emphasized by Fernandez, 1995). Public policy interventions could benefit women in several ways. First, government funding for well-designed research on prevention programs targeting women must be allocated. Prevention programs and prevention research must be seen as integral parts of the same effort: research must focus on barriers for women and how to overcome them; findings must then be translated into actual programs which, in turn, are evaluated. Second, there is a dire need for more needle exchange and drug treatment programs for both women and men. Condom availability must also be enhanced, especially for sexually active adolescents; although condoms are not “perfect,” they are the best protection currently available against sexual transmission of HIV. An overriding issue is increasing the visibility of strong leaders at the national, state and local levels. We must overcome the entrenched ignorance and fear to provide prevention messages and programs that are explicit, culturally sensitive, and sustained over time. If we are to be effective in stemming the epidemic for both women and men, we must work simultaneously to develop effective technologically based prevention (e.g., virucides, vaccines) and behaviorally based prevention programs aimed at changing both community norms and individual behavior (National Commission on AIDS, 1993).

HIV COUNSELING AND TESTING Two critical discoveries in the science of AIDS were the isolation of HIV as the etiologic agent of AIDS and the development of a test to identify the presence of HIV antibodies in blood. HIV serologic testing was soon coupled with counseling for education, risk assessment, provision of safer sex and safer drug-using guidelines, and referral to treatment for those who are seropositive. HIV C&T for individuals at risk can be the first step in diagnosis and referral to treatment. There are several public policy issues that pertain to testing, particularly for women. One of the political debates in the AIDS arena has concerned mandatory testing. This debate is often seen as a conflict between public health officials and HIV/AIDS advocates (Joseph, 1993). Those arguing for a more traditional public health approach to the epidemic are concerned about protecting the uninfected; it

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has been argued that large-scale screening programs could be used to identify seropositive individuals, inform and test their sexual or drug-using partners, and educate or mandate behavior change to stop the spread of further infection. In contrast, there are concerns about privacy and protecting the civil rights of individuals with HIV. Moreover, legislative attempts to mandate large-scale HIV testing at the federal, state, and local levels have been very expensive and have yielded identification of relatively few cases. It is unclear whether mandatorytesting laws, when enacted, have had any effect in reducing transmission of HIV (Miller, Turner, & Moses, 1990). Currently, all new military and Job Corps recruits are screened for HIV, and are barred from serving if seropositive. Mandatory testing in the context of premarital screening has been rejected because of poor cost-effectiveness. In Illinois, where mandatory premarital screening for HIV was in place from January of 1988 through August of 1989, it was estimated to cost $312,000 to identify one HIV-positive individual during the first 6 months of the program (Peterson, White, & the Premarital Screening Study Group, 1990). Based on these figures, if premarital screening were implemented nationally, it would cost more than $167 million, or $17,246 per seropositive person detected. Studies on the cost-effectiveness of screening all individuals admitted to the hospital versus taking universal precautions against HIV have shown similar results: universal HIV testing is not a costeffective means of identifying those who have HIV (Lawrence, Gafni, & Kroenke, 1993). Mandating HIV testing pre- or postnatally is considered an opportunity to reach large numbers of women, particularly since the results of Trial 076. This clinical trial indicated that a protocol of zidovudine administered during pregnancy, childbirth, and to the infant for 6 weeks after birth reduced the rates of transmission of HIV from mother to child by 67% (Connor et al., 1994). These results, although providing the first real hope for the prevention of vertical transmission, have stirred the debate on mandatory testing of pregnant women even further. Some public health officials have called for initiating mandatory testing of pregnant women. As of this writing (March 1996), the Senate version of the Ryan White Care Reauthorization Act (S. 641, currently under revision in committee) includes legislation that would essentially require mandatory testing for pregnant women and/or newborns. States applying for particular grants would have to require that newborns be tested for HIV if the mother was not tested prenatally. The CDC has published guidelines for the testing of pregnant women that includes mandatory counseling and voluntary testing for women as a part of prenatal care (U.S. Public Health Service/CDC, 1995). They suggest a universal approach for counseling and testing pregnant women, rather than testing in geographic areas that have the highest prevalence of women with HIV. This

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approach, although more expensive to implement, would provide a uniform policy that would reach women with HIV in all areas of the United States, and might be less discriminatory than a policy that would single out particular areas of the country or particular racial or ethnic groups. The CDC does not include a policy of mandating testing in its recommendations for several reasons, including the acknowledgment that women may avoid prenatal care if they do not wish to be tested. The possibility of mandatory testing and the proposal of mandatory counseling and voluntary testing for pregnant women may be problematic for several reasons. First, a systematic program of prenatal testing for women will be expensive. In the days of government budget cuts, particularly for social services, increasing funding for programs of this sort will necessarily result in cuts in other types of HIV services. In addition, even with voluntary testing, women may avoid prenatal care if they feel they will be pressured to be tested. Third, instituting counseling and testing for women through obstetrics and prenatal care facilities would not reach a large portion of women at risk for HIV those who are poor, those who are not pregnant, and those who do not receive prenatal care. The focus of this program of counseling and testing for pregnant women is clearly more about preventing or reducing maternal-childtransmission and less about what is best for women at risk for or infected with HIV. Involuntary testing (i.e., testing individuals against their will or without informed consent) has been at the center of another policy debate. Involuntary testing occurs most often in hospitals or in law enforcement situations, and there have been a number of legal cases involving individuals who were tested for HIV without their consent (Gostin, 1990). Others suggest that police departments and hospitals should have the right to test anyone they suspect of being infected with HIV for the protection of their employees (Archer, 1989; Justice & King, 1993). The women who are most vulnerable to involuntary testing are those arrested for prostitution or drug possession. Although these women may be more likely to be infected with HIV, and in fact data indicate higher seroprevalence rates among female inmates than male inmates (Brewer & Derrickson, 1992), their rights to informed consent and confidentiality may not be protected. Also, the concern behind testing these women is not their welfare, but rather the welfare of the individuals who work with them (i.e., police, prison guards). Thus, they may be less likely to receive counseling or medical treatment and more likely to be discriminated against. Rather than being viewed as individuals who are possibly ill and in need of services, they are viewed as sources of possible infection. There is a current movement in Congress to unblind a CDC surveillance study of newborn infants; in many states, all infants are tested for HIV antibodies to assess the prevalence rates of HIV in childbearing women. HR 1289, “Newborn Infant HIV Notification Act,” would require that the results of HIV testing of a

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newborn infant (as in the case of the currently blind CDC surveillance study being conducted in many states) be reported to the biological mother of the infant if she is the legal guardian, or to the appropriate official if the state is the legal guardian of the infant. Similar legislation has already been passed in some states (e.g., New York) and is under consideration in others. This notification amounts to the involuntary testing of women giving birth in the states in which this study is being conducted. Because infants are born with the antibodies of their mothers, the HIV– antibody status of an infant is an indication of the mother’s HIV status, but not necessarily of the infant. The vast majority of the infants born to HIV-infected women are HIV negative themselves; thus, this surveillance study is only an indication of the prevalence of HIV among women giving birth. Although no action will be taken on this bill in this congressional section, its essence is included in the Senate version of the Ryan White Care Act Reauthorization bill. Either of these legislations, if passed by Congress and signed into law, would greatly infringe on the civil rights of women and would not significantly increase the quality of care for women or their children. Partner notification or contact tracing are currently used nationwide to control syphilis and gonorrhea. Some states (e.g., Utah) have instituted partner notification programs to help prevent HIV infection. Some of the advantages in contact tracing include the ability to target interventions to those at highest risk, to notify individuals who may not know they are at risk, and to initiate early treatment of asymptomatic persons. One of the main disadvantages concerns confidentiality. As with other issues around testing, this may be particularly detrimental for women. Partner notification may put women at physical or financial risk. Additionally, although contact tracing is often cited as a prevention method for women (i.e., if they know that a sexual or needle-sharing partner is infected, they will take steps to find out if they are infected and change their behavior accordingly), the efficacy of this tactic has not been demonstrated (Pavia, Benyo, Niler, & Risk, 1993). Still another testing issue concerns anonymous versus confidential testing. In anonymous testing, the individual does not give a name and gets his or her results by using a code word or number. In confidential testing, the person is identifiable, although those records are kept confidential by the public health officials of the particular state in which the testing is being conducted. Because there is no guarantee that the names of people who test positive will never be released and because of the stigma still associated with HIV, many advocates favor anonymous testing as the best way to protect people with HIV. The problem with anonymous testing is that it does not allow for follow-up either to give test results or to assist in referral to medical treatment. It is also difficult to keep accurate data on the number of people tested because counts include both people being tested for the first time and those being retested. As a result, some public health officials have advocated confidential testing. This would enable public health departments to track HIV infection better, to follow up with people who test positive to encourage entry into

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health care, and potentially to notify partners. As stated previously, however, confidential testing does not completely protect an individual from possible identification. Many women may fear their partner’s reactions, losing their children, or losing their jobs. Therefore, they may not get tested if they feel there is the possibility of identification after a positive test result, especially if mandatory partner notification were included. Also, if the goal is to encourage people to get tested, evidence suggests that individuals prefer anonymous testing. In Oregon, the number people who sought HIV testing increased by 50% when anonymous testing was introduced (Fehrs et al., 1988). When both anonymous and confidential testing are offered, individuals are more likely to go to anonymous sites (Kegeles, Catania, Coates, Pollack, & Lo, 1991). Issues around mandatory testing, involuntary testing, partner notification, and anonymous versus confidential testing concern both men and women. However, as more women have become infected with HIV and those instituting public policy have begun to realize the importance of adapting such policy to include women, some of the legislative attempts to mandate testing have specifically focused on women (e.g., pre- and postnatal testing). Most of these policies do not serve the needs of women with HIV or those most at risk of HIV. For instance, mandatorytesting laws aimed at prostitutes do not provide for any economic alternatives or address why women become sex workers. HIV testing is often seen as an important public health tool in the prevention of HIV, however, research indicates that HIV C&T does not result in the reduction of high-risk sexual behavior among seronegative gay men (see Higgins et al., 1991, for review) or heterosexual women (Ickovics, Morrill, Beren, Walsh, & Rodin, 1994). Involuntary-testing policies seem to be punitive in nature, and may contribute to the idea that public servants who come in contact with HIV-infected people are at risk of infection. Rather than educating police, prison guards, and health care workers that HIV cannot be transmitted through casual contact, the involuntary testing of individuals suspected of having HIV lends credence to the misguided notion that people who work with HIV-positive individuals are at risk of infection. Rather than reducing HIV transmission to criminal behavior, policy should focus on programs that will give women the necessary tools to reduce the spread of the disease as part of the counseling and testing process. Rather than educating women to assess whether they are at risk of HIV infection, and encouraging them to change their behavior if at risk, mandatory-reporting and partner-notification laws may discourage women from being tested in the first place. In addition, informing a woman that she is HIV positive does not ensure that she will seek health care, even if she is encouraged to do so. There are some data to suggest that women who were informed that they are HIV positive prenatally were more likely to delay entry into health care than those women who self-referred to HIV testing (Ickovics et al., 1996). Thus, public policy regarding HIV testing should be more focused on educating women to know when they are at risk, why they should get tested, and

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how to get tested, rather than mandating testing in any context. It is important to note that the primary reason for testing is for diagnosis and early entry into medical care among those with HIV.

ACCESS TO CARE Women are more likely than men to be poor, uninsured, or underinsured (Farley, 1985). Women report that lack of money is their largest obstacle to seeking medical care (Institute of Medicine, 1985), and it is estimated that 14 million women of “reproductive age” in this country have no health coverage (Harvey, 1990). Poverty is a major correlate of inadequate access to health care and it is associated with the acquisition of many chronic diseases, including HIV (U.S. Department of Health and Human Services, 1990). Women who are poor are most likely to be at risk of HIV infection and least likely to have access to health care once infected. Poor women in our nation’s inner cities have always had difficulty obtaining clinical care. Now, as the AIDS epidemic expands, rural women who are infected face another set of challenges. Access to medical care in general, and HIV-related care specifically, is likely to be difficult for women in rural areas because of geographic scarcity of services (Lambrew & Ricketts, 1993). Distance compounds issues of access in a number of ways: availability of transportation; cost and time needed to travel to a clinic, including taking time off from work for routine medical visits and arranging for child care; lack of a supportive community close by to assist with daily needs, emotional support, or specialized medical attention. Individuals in rural areas may have less access to alternative therapies and clinical trials, which require extensive medical monitoring often on a monthly basis. Persons with HIV may travel to the closest city for medical care where providers may be better trained and confidentiality is less of a concern. However, as an individual’s disease progresses, this may not be possible; nursing homes and longterm care facilities in rural areas may be caring for patients with HIV without sufficient expertise or experience. Although the stigma for HIV-positive individuals is great everywhere, in rural areas there may be increased fear of identification and isolation. While the issues for urban and rural women with HIV may be similar (i.e., access, transportation, confidentiality), the cultural milieu is very different. And because the number of AIDS cases in rural areas is limited, knowledge, understanding, and compassion about HIV/AIDS may be more limited as well. Whatever the context, women with HIV may find it difficult to obtain early treatment for HIV. Understanding that health care is a necessity, the federal government has instituted various options for health care coverage (e.g., Medicare), provided that an individual meets a stringent set of eligibility requirements. Regardless of HIV serostatus, if an individual has income below the poverty level

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(approximately $6000) and has one or more children, then eligibility is established for Aid to Families with Dependent Children (AFDC). As part of the federal welfare system, she may also receive Medicaid (Title 19) benefits, depending on the state in which she lives.* The second possibility for women with HIV is the federal disability system. If an individual has not been employed and is disabled by HIV/AIDS, she will be eligible for Supplemental Security Income which may include Medicaid-again, depending on the state in which she lives. If an individual has been employed and it is determined that she can no longer work because of HIV/AIDS, she will receive Social Security disability benefits, which includes Medicare after 2 years. Before that, however, no medical benefits are provided directly from Social Security. At this time there are no federal income or medical assistance programs for individuals between the ages of 21 and 65 who do not qualify for disability, have an annual income above the poverty level, and who do not have children. Moreover, there are no general medical assistance programs for people with HIV. Funding from the Ryan White CARE Act provides emergency funds for cities with high AIDS incidence, and some of this funding supports clinical care; however, these resources are limited and are distributed at the discretion of the particular city or local administrative agency. Some of the individuals not covered by federal programs may have other options in the state/local assistance programs. If there are state programs available for people with HIV/AIDS, they usually only cover people who cannot qualify for Social Security disability. Consequently, there is often a push on the part of the states to get individuals into the disability program. Because the federal government has been reluctant to make the requirements for disability coverage more liberal, there is a conflict between the state/local governments and the federal government with regard to disability funding. Unfortunately, women often get caught in the middle of this conflict. For example, during the first decade of the epidemic, severe gynecological problems were not seen as a marker of HIV disease. In November, 1992, Congress expanded the list of conditions qualifying a person for Social Security disability benefits to include some of the gynecological conditions experienced by women with HIV. Women with HIV who have invasive cervical cancer or multiple and recurrent bacterial infections that require intravenous antibiotic treatment or hospitalization at least three times in one year now qualify for disability. However, women may be quite debilitated by gynecological symptoms before they reach this stage in their *Medicaid is a state-administered program, and, although some of the funding comes from the federal government, each state determines what their Medicaid program will be and the benefits that it will provide. The CDC definition of AIDS now includes a CD4 count of less than 200. Individuals with a CD4 count below 200 may or may not have severe enough symptoms to make them disabled or unable to work, and therefore the federal government’s AIDS definition has not been liberalized in the same manner as the CDC’s.

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illness. Thus, although the new requirements do include some gynecological conditions and may result in better access to care for some women with HIV, the federal disability requirements are still too narrow. Besides the issue of disability funding, existing policy and programs that provide access to health care (e.g., Medicare) fail to fully address the needs of women on several levels. First, it is very difficult and time consuming to navigate the social service system. If already sick with HIV, the challenge is even greater to mobilize the time, energy, and resources necessary to work through the bureaucracy to obtain entitlements. The metaphor of a bureaucratic maze, complete with blind spots and dead ends, has often been used to describe this system. Second, the quality of care received by people who rely on Medicaid and Medicare for their health care has been questioned. A recent study of over 3000 patients with HIV in New York indicated that women were more likely than men to be covered by Medicaid (66 versus 37%) and less likely to have private health insurance (19 versus 42%) (Bastian et al., 1993). The authors suggested that this health insurance disparity was a critical factor compromising both women’s access and quality of care. For example, hospital mortality was significantly higher for women than men with HIV-related Pneumocystis carinii pneumonia (PCP), even after controlling for illness severity and sociodemographic factors. Because PCP can be successfully treated when diagnosed promptly, this gender difference in mortality calls into question the quality of care women on Medicaid receive. Third, health care through the social service system is becoming more and more difficult to obtain. In most states, there currently is movement toward managed care for individuals receiving publicly subsidized medical care. This system will most likely make the bureaucratic maze surrounding Medicaid even more complicated. In addition, with a call in Congress and among the state governments for cuts in welfare benefits, health care benefits for women with HIV may become even more scarce. Coordinated Services and Quality of Care Ideally, health care for women with HIV would be integrated, including primary care, specialized services for HIV-related illness and gynecological services. For women with children, coordinated access to pediatric and adult medical services has been highlighted by both patients and health care providers as a critical need. In addition, psychological and social services, legal services, case management for assistance with obtaining entitlements, family support, and drug treatment may also be required. All of these supplemental services require a commitment on the part of health care administrators and policymakers to provide funding for comprehensive care needed for women with HIV. Integration of drug-treatment services must be a priority. Among women with AIDS, 48% are current or past injection drugs users (CDC, 1995). Clearly, the

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medical and social service needs of HIV-positive, drug-using women are extremely complex (see Weissman & Brown, 1995). Perhaps most importantly, drug use compromises immune system function (Brown, Stimmel, Taub, Kochwa, & Rosenfeld, 1986; Mientjes et al., 1991); therefore, expedited access to drug treatment is imperative to maintain health. Outreach programs that rely on recruiting women through health care facilities may be missing those most in need because they have only limited connections to the health care system (Miller, Booraem, Flowers, & Iverson, 1990). Access to drug-treatment programs is a problem for women regardless of HIV status. Programs are often unavailable for women, those that exist fail to provide the support services (e.g., childcare) that women need, and follow-up services have been inadequate. Pregnant drug users have difficulties finding programs that will accept them, and the programs that do treat them often do not provide or arrange for prenatal care (Chavkin, Driver, & Forman, 1989). The potential for losing their children is a major threat for women seeking drug treatment. If a woman enters a residential treatment facility and has no one to care for her children, the children would be put in foster care and it might be difficult for a mother to regain custody after completing treatment. This justifiable fear may prevent women from seeking treatment and put them at even further risk. Drug use has a major impact on HIV disease, both in terms of the health of people infected and the spread of infection. Policy must be adapted to expedite access to drug treatment for women with HIV, including those pregnant and/or with children. Moreover, special attention to medical and social service needs is required to promote not only detoxification but also long-term maintenance of drug-free status. Efforts to provide coordinated care for both women and men with HIV have been underfunded at every level. Because of continued epidemic spread and longer survival following diagnosis, the numbers of people living with HIV continue to expand; their medical, social, legal, and other needs grow more complex. Even if there were no new infections from today forward, the health care system would be severely challenged to care for the needs of those already infected with HIV (National Commission for AIDS, 1993). In terms of government policy and access to health care, our country has stalled in its commitment to trying to provide health care to those most in need. Further, changes in the provision of social services and entitlements may continue to negatively affect those most disadvantaged, including women with HIV. As of this writing, there are several items pending in Congress that would affect women with HIV, including the ongoing hearings for the reauthorization of funding for the Ryan White CARE Act. The outcome of these hearings is uncertain at this point; because these funds are used, in part, to provide care and services for people in cities and states most affected by HIV, the reauthorization of this act is critical for women with HIV.

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WOMEN’S INCLUSION IN RESEARCH In order to gain a real understanding of how HIV/AIDS affects women, biologically, psychologically, and socially, women must be included in research. However, nearly all early research included only homosexual or bisexual men in their studies. For example, in a review of 141 neuropsychiatric or neuropsychological studies of HIV published between 1988 and June 1994, and found that only 91 (64.5%) included any women (Fox, Ethier, Cerreta, & Ickovics, 1995). However, of all study participants from 1988 to 1994, only 8.2% were women, much lower than their representation among persons with AIDS (i.e., of persons with AIDS in the United States, 13.8% are women). It is important to note that even when women were included in studies of neurological complications of HIV/AIDS, their numbers were too small to permit analysis of the data by gender. Only 8.5% of studies included women in numbers sufficient to conduct data analysis by sex. Of the 12 studies that did include women in sufficient numbers, only three analyzed their data by sex. For this reason, it is not clear whether women with HIV suffer neurological complications at the same or different rates than men. In addition, sex similarities or differences in the type and severity of neurological manifestations have not been adequately documented. Women have been excluded from HIV-related research for a variety of reasons. Although women have come to account for greater proportions of people with AIDS as the epidemic continues, they are still a minority. It is argued that biological differences (from men) or hormonal fluctuations make it difficult or too “costly” to include women in medical research projects (Rodin & Ickovics, 1990). Specifically because of the differences between women and men who have HIV/ AIDS, findings from the existing research may not generalize to women. Ironically, the very reasons women are excluded from research are the reasons they should be included. Differences in hormones and genetics, as well as sex roles, social conditions, and socioeconomic factors are likely to influence virus exposure and disease progression (Ickovics & Rodin, 1992). There has been an official policy within the National Institutes of Health (NIH) since 1986 that states that clinical studies must include both women and men; that sex distribution must represent the incidence or prevalence of the disease/condition being studied; that if one gender is not represented, there must be a clear justification for this; and that researchers are strongly urged to note and evaluate sex differences. In 1990, however, during hearings of the Subcommittee on Health and the Environment of the U.S. House of Representatives, Nadel(l990) testified that this policy was neither well-implemented nor enforced. At that time, there were no instructions given to investigators in the grant application booklet regarding the inclusion of women. There were inconsistencies in how the policy was being implemented across institutes within the NIH. The policy also did not apply to the intramural NIH research program. Finally, no data were being kept on

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the demographic compositions of study populations, leaving no means of evaluating the effectiveness of the policy. In part as a response to these hearings, the NIH established the Office of Research on Women’s Health in September, 1990. Among its primary objectives is to enforce NIH policy and to provide money for research, ensuring that women are included in scientific studies. In terms of policy specifically focused on research with women at risk of or infected with HIV/AIDS, as part of the Women’s Health Equity Act, House Representative Constance Morello proposed the Women and AIDS Research Act to support research on HIV transmission, development, treatment, and prevention in women (HR 2394). It also requested funds to create a new program under the Community Based Clinical Research Initiative that would establish research organizations located in community settings, providing access to clinical research for populations at high risk of HIV infection. These funds would provide services for women (e.g., child care) facilitating their participation in clinical trials. After being introduced in every congressional session from 1990 through 1993, HR 2394 passed through Congress and was signed into public law by President Clinton in November 1995 (Representative Constance Morello’s office, 1996, personal communication). There is a critical need to include women in the broadest range of research— from prevention, diagnosis, and treatment outcomes to identification of the psychosocial and biomedical correlates of health and illness for those with HIV. Inclusion in experimental drug research through AIDS clinical trials has become a dominant rallying cry among women with AIDS and their advocates. Access to Clinical Trials Given the small number of FDA-approved pharmaceuticals for HIV-related treatment, clinical trials provide the only means for individuals with HIV to gain access to alternative therapeutic options that may have health benefits (Walters, 1988). Clinical trials are used to evaluate the efficacy and toxicity of a new drug or new combinations of drugs. Women, particularly women of color and those with a history of injection drug use, have had limited access to clinical trials, although they are increasingly represented among persons with HIV/AIDS (Cotton, Feinberg, & Finkelstein, 1991; Craven et al., 1990; D’Eramo, Kirschenbaum, McCarthy, & Davis, 1991; Ethier et al., 1996; Long, Davis, Smith, & Kirschenbaum, 1991; Pearl, Banzhaf, Leger, & Long, 1992). Women have often been excluded from trials because of concerns about teratogenic effects (i.e., birth defects), the desire to eliminate hormonal variation, increased costs associated with women’s inclusion, and because participants in clinical trials are generally recruited from medical settings (e.g., private physicians and hospital clinics) to which women with HIV have had less access. In addition, there is speculation that women, minorities, and those with a history of injection

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drug use may be more difficult to recruit for clinical trials and may be less adherent to medical regimens, making them less desirable as trial participants. This notion continues despite evidence that these groups do successfully comply with HIVtreatment regimens (Craven et al., 1990; Selwyn, Budner, Wasserman, & Arno, 1991). Preliminary results from our research at the Yale-New Haven AIDS Clinical Trial Unit suggest that there are no significant differences between women and men in adherence and retention in AIDS Clinical Trials (Ickovics, Ethier, & Fox, 1994). None of the rationales provided for the exclusion of women from clinical drug trials are for their benefit; most are to their detriment. Because of sex differences in disease progression, results from clinical trials including only men may not be generalizable to women with HIV. The prevalence of HIV cofactors and opportunistic infections is not random across patients with HIV-related disease. For instance, Kaposi’s sarcoma is significantly more common in gay men than others, while women with HIV/AIDS are prone to severe and recurrent gynecological complications including vaginal candidiasis, pelvic inflammatory disease, human papilloma virus, and cervical cancer. In addition to clinical differences over the course of HIV infection, there are documented differences in individual response to therapeutic agents. For example, there are sex differences in body size and composition, weight, endogenous and exogenous hormones (e.g., birth control pills, hormone-replacement therapy), gastric emptying time, and cerebral blood flow, all of which can affect the pharmacokinetics and pharmacodynamics of a medication (Hamilton, 1989). Race differences in drug response have also been documented (Cotton, 1990; Svensson, 1989). There has also been much speculation about, but little research concerning, the interaction effects (e.g., effects on metabolism, efficacy, toxicity) of therapeutic agents and drugs like cocaine or heroine, or legal substitutes such as methadone. Thus, differences in sex, race, and drug-using status may be an important source of variability, and may have an impact on therapeutic efficacy as well as on the severity and pattern of side effects. AIDS clinical trials must be increasingly more representative of the populations in need of treatment, maximizing benefits and minimizing the risks of HIV-related therapeutic regimens (Ickovics, 1996). Clinical trials that are more representative will be more expensive: recruitment and screening take longer, sample sizes must be increased, and the trials themselves will be more expensive. In the end, it is a cost-benefitdetermination. Do the benefits of larger more representative clinical trials (i.e., enhanced knowledge of drug efficacy and toxicity for all persons) outweigh the costs? Levine (1991) argues that the advantages of testing new drugs broadly can avert more serious problems later. Specifically, close monitoring of drug response and toxicity within the confines of a clinical trial can identify potential harmful effects immediately, and corrective actions can be taken. On the other hand, if drugs are not widely tested, but are then widely distributed, there is the risk of exposing individuals to “unknown but knowable” dangers.

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Another of the benefits of AIDS clinical trials is access to free health care. As part of most AIDS clinical trials, participants receive free drugs and clinic visits and their health is monitored very closely during the drug evaluation process. Free or improved health care is one of the main reasons why individuals choose to participate in a clinical trial (Ethier et al., 1996). Although there are important ethical considerations concerning individuals subjecting themselves to experimental treatments in order to have access to health care, AIDS clinical trials may be an important way for women to have access to care they need and treatments that might benefit them.

CONCLUSION There has been increased awareness of issues that affect women with HIV/ AIDS and those most at risk; however, current public policy is not always in their best interest. Access to care and coordinated services remains a critical issue for women with HIV/AIDS. Many current and proposed policies regarding HIV testing may not only prevent women from seeking testing, further delaying diagnosis and entry to care, but also seem punitive in nature. There is still a dearth of AIDS research including women in all areas—prevention, biomedical, psychological, and social. Until recently, women have not had a strong advocacy group to work on their behalf to change public policy to better address their needs. The first notice that women were being infected by HIV occurred when infants were diagnosed with AIDS, having acquired the virus perinatally from their mothers. In the early to mid-1980s, the focus remained on the child side of the dyad, and pediatric AIDS received a great deal of attention. Women were seen mainly as vectors of transmission and public policy treated them as such. Currently, with the results from AIDS Clinical Trial 076, the focus on women as vectors of transmission to children has reemerged. The results of this study raise important questions about public policy regarding women at risk of and infected with HIV. Preventing vertical transmission is critically important, but so too is preventing primary spread of HIV to women; where will limited prevention dollars be spent? Will these findings result in mandatory testing for all pregnant women or for pregnant women most at risk? If so, among those testing seropositive, how will testing be combined with assistance in reproductive decision making (e.g., voluntary/forced abortions), as well as access to primary, AIDS-specific, and prenatal health care services? There seems to be no question that if possible, women would do anything to prevent vertical transmission to a child, but will pregnant women be forced to take AZT, even if it is not in their own best health interest (i.e., AZT can cause serious side effects, has time-limited effectiveness, and is recommended for those late in the disease cycle)? Who will pay for AZT for pregnant women who cannot afford the drug? What about equitable access to

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therapeutic services for nonpregnant women and men? Nearly 500 women were included in this clinical trial to determine vertical transmission rates, yet women are often excluded from other AIDS clinical trials that might benefit their health; how are inclusion and exclusion criteria for clinical trials determined and who decides about research priorities? It is important to remember that women with HIVlAIDS are not a homogeneous group; they are of every race, class, and age and each has a unique sexual and drug-using history. Their diversity makes it clear that no single program can meet all of the needs of women with HIV (Fee & Krieger, 1993). However, all women with HIV may deal with some of the same issues: access to quality health care and clinical trials, the need for treatment of gynecological complications associated with HIV, and concerns about their dignity in the face of a debilitating chronic, and ultimately fatal disease. Only as more and more women have become infected has attention turned specifically to women with HIV and their needs. This change has been an important one and must continue, because the women most likely affected by this disease are those most disempowered by our society: poor women, women of color, and women with a history of drug use. Therefore, women with HIV/AIDS might be most affected by public policy and changes in that policy (e.g., many rely on social services like AFDC and Medicaid, some are in need of federal- or statefunded drug treatment). Equity in policy regarding clinical care and clinical research may help prevent transmission among women most at risk of HIV infection. and may have direct effects on the quality of life for women already infected. In addition, the inclusion of women in research can contribute to our knowledge and ability to care for both women and men. In tracing the current public policies on HIV/AIDS, we can see positive trends under way, although there is still a great deal of distance to cover. The National Commission on AIDS closed its doors in 1993, and left us with two basic recommendations: (1) leaders must speak out about AIDS to their constituencies and (2) we must develop a clear, well-articulated national plan for controlling AIDS. To this we add a third, specific to women: we must continue to ensure that the policies enacted are in the best interests of women with HIV/AIDS and those most at risk. Let us heed the warning of Simone de Beauvoir that “the only public good is that which assures the private good of the citizens.”

REFERENCES Anastos, K., & Matte, C. (1992). Women—The missing persons in the AIDS epidemic. In N. F. McKenzie (Ed.), The AIDS reader: Social, political, ethical issues (pp. 190-199). New York: Meridian.

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Archer, V. E. (1989). Different views: Psychological defenses and control of AIDS. American Journal of Public Health, 79, 876-878. Aral, S. O., & Wasserheit, J. N. (1995). Interactions among HIV, other sexually transmitted diseases, socioeconomic status, and poverty in women. In A. O’Leary & L. S. Jemmott (Eds.), Women at risk: Issues in the primary prevention ofAIDS (pp. 13-41:). New York Plenum Press. Bastian, L., Bennett, C. L., Adams, J., Waskin, H., Divine, G., & Edlin, B. R. (1993). Differences between men and women with HIV-related Pneumocystis carinii pneumonia: Experience from 3,070 eases in New York City in 1987. Journal of Acquired Immune Deficiency Sydromes, 6, 617-623. Bayer, R. (1994). Ethical challenges posed by zidovudine treatment to reduce vertical transmission of HlV. New England Journal of Medicine. 331, 1223-1225. Brewer, F., & Derrickson, 1. (1992). Editorial review: AlDS in prison: A review of epidemiology and preventative poiicy. AIDS, 6, 623-628. Brown, S. M., Stimmel, B., Taub, R. N., Kochwa, S., & Rosenfeld, R. E. (1986). Immunologic dysfunction in heroin addicts. Archives of Internal Medicine, 134, 1001-1006 Centers for Disease Control and Prevention. (1985). HIV/AIDS surveillance report (1983-1984) Centers for Disease Control and Prevention. (1995). HIV/AIDS surveillance report (through June, 1994). Chavkin, W., Driver, C. R., & Forman, P. (1989). The crisis in New York’s perinatal services. New York State Journal of Medicine, 89, 658-663. Connor, E. M., Sperling, R. S., Gelber, R., Kiselev, P., Scott, G., O’Sullivan, M. J., VanDyke, R., Bey. M., Shearer. W., Jacobson, K. L., Jimenez, E., O’Neill, E., Bazin, B., Delfraissy, J., Culnane, M., Coombs, R., Elkins, M., Moye, J., Stratton, P., & Balsley, J. (1994). Reduction ofmaternal-infant transmission of human immunodeficiency virus type I with zidovudine treatment. New England Journal of Medicine, 331, 1173-1180. Cotton, D., Feinberg, J., & Finkelstein, D. (1991, June). Participation of women in a multicenter HIV clinical trials program in the United States. (Abstract TU.D.114). Paper presented at the 7th International Conference on AIDS, Florence, Italy. Cotton, P. (1990). Is there still too much extrapolation from data on middle-aged white men? Journal of the American Medical Association, 263, 1049-1050 Craven, D. E., Liebman, H. A., Fuller, J., Hagerty, C., Cooley, T. P., Saunders, C. A., Steger, K. A., & Libman, H. (1990). AIDS in intravenous drug users: Issues related to enrollment in clinical trials. Journal of Acquired Immune Deficiency Syndromes, 3(Suppl. 2), S45-S50. D’Eramo, 3. E., Kirschenbaum, D. Z., McCarthy, M., & Davis, T. (1991, June). Women and minorities have less access to AIDS drug trials. (Abstract W.D.4291). Paper presented at the 7th International Conference on AIDS, Florence, Italy. De Roo, A., & Colebunders, R. (1995). Letter to the Editor. New England Journal of Medicine, 332, 892. Ethier, K. A., Fox, R. A., Rodriguez, M. R., Martin, C., Friedland, G., & Ickovics, J. R. (1996). Access and harriers of AIDS clinical trials: Factors affecting participation in clinical research. (Submitted for publication.) Farley, P. J. (1985). Who are the underinsured? Milbank Memorial Fund Quarterly—Health & Society, 63, 476-503. Fee, E., & Krieger, N. (1993). Understanding AIDS: Historical interpretations and the limitations of biomedical individualism. American Journal of Public Health, 83, 1477-1486. Fehrs, I,. J., Fleming, D., Foster, L. R., McAlister, R. O., Fox, V., Modesipp, S., & Conrad, R. (1988). Public health: Trial of anonymous vs. confidential human immunodeficiency virus testing. Lancet, 2, 379-382. Fernandez, M. I. (1995). Latinas and AIDS: Challenges to HIV prevention efforts. In A. O’Leary &

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L.S. Jemmott (Eds.), Women at risk: Issues in the primary prevention of AIDS (pp. 159-174).New York: Plenum Press. Fox, R. A., Ethier, K. A., Cerreta. C. L., & Ickovics, J. R. (1996). Women and HIV/AIDS-related neurological research Potential gender differences remain understudied. (Submitted for publication.) Gardner, W., & Wilcox, B. (1993). Political interventions in scientific peer review. American Psychologist, 48, 972-983. General Accounting Office. (1993). Needle exchange programs: Research suggests promise as an AIDS prevention strategy (GAO Report No. B-247447). Washington, DC: U.S. Government Printing Office. Gollub, E. L. (1995). Women-centered prevention techniques and technologies. In A. O’Leary & L. S. Jemmott (Eds.), Women at risk: Issues in the primary prevention of AIDS (pp. 43-82).New York: Plenum. Gostin, L. O. (1990). The AIDS litigation project: A national review of court and human rights commission decisions, part I: The social impact of AIDS. Journal of the American Medical Association, 243, 1961. Hamilton, J. A. (1989). Applied gender-related pharmacology: Rationale for a centerfor the study of women and drugs. Unpublished manuscript, Institute for Research on Women’s Health, Washington, DC. Harvey. B. (1.990). A proposal to provide health insurance to all children and all pregnant women. New England Journal of Medicine, 323, 1216-1220. Heimer, R., Kaplan, E. H., Khoshnood, K., Jariwala, B., & Cadman, E. C. (1993). Needle exchange decreases the prevalence of HIV-1 proviral DNA in returned syringes in New Haven, Connecticut. The American Journal of Medicine, 95, 214-220. Higgins, D. L., Galavotti, C., O’Reilly, K. R., Schnell, D. J., Moore, M., Rugg, D. L., &Johnson, R. (1991). Evidence for the effects of HIV antibody counseling and testing on risk behaviors. Journal of the American Medical Association, 246, 2419-2429. Hilts, P. J. (1991, September 25). Panel criticizes cancellations of study of teen age life. New York Times, p. A2. Hoffman, C. A., & Munson, R. (1995). Ethical issues in the use of zidovudine to reduce vertical transmission of HIV. New England Journal of Medicine, 332, 891. Ickovics, J. R. (1996). From exploitation to access: Ethical. clinical, and scientific considerations in AIDS clinical trials. Manuscript submitted for publication. Ickovics, J. R., Ethier, K. A, & Fox, R.A. (1994, July). Recruitment, adherence, and retention in AIDS clinical trials: A prospective study. Presentation given at the AIDS Clinical Trials Group Meeting, Washington, DC. Ickovics, J. R., Forsyth, B. F., Ethier, K., Harris, P., & Rodin, J. (1996). Delayed entry into medical care for women with HIV: Barriers and opportunities for intervention. AIDS Patient Care, 10(1), 21-24. Ickovics, J. R., Morrill, A., Beren, S., Walsh, U., & Rodin, J. (1994). Limited effects of HIV testing for women: A prospective study of behavioral and psychological consequences. Journal of the American Medical Association, 272, 443-448. Ickovics, J. R., & Rodin, J. (1992). Women and AIDS in the United States: Epidemiology, natural history and mediating mechanisms. Health Psychology, 11, 1-16. Institute of Medicine. (1985). Preventing low birthweight. Washington, DC: National Academy Press. Joseph, S. C. (1993). Toward an urban HIV policy. Bulletin of the New York Academy of Medicine, 70, 37-49. Justice, A. C.. & King, J. T. (1993). The case for a full cost-benefitanalysis of preoperative HIV screening. Journal of Clinical Epidemiology, 46, 1229-1231. Kaplan, E. H. (1991). Evaluating needle exchange programs via syringe tracking and testing. AIDS and Public Policy, 6, 109-115.

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Kegeles, S. M., Catania, J. A., Coates, T. J., Pollack, L. M., & Lo, B. (1991). Many people who seek anonymous HIV-antibody testing would avoid it under other circumstances. AIDS, 4, 585-589. Lambrew, J. M., & Ricketts, T. C. (1993). Patterns of obstetrical care in single-hospital, rural counties. Medical Care, 31, 822-933. Lancet, (1994). Editorial. Zidovudine for mother, fetus, and child: Hope or poison? Lancet, 334, 207-209. Lawrence. V. A., Gafni, A., & Kroenke, K. (1993). Preoperative testing: Is it less expensive than universal precautions? Journal of Clinical Epidemiology, 46, 1219-1227. Levine, C. (1991). Women and HIV/AIDS research: The barriers to equity. IRB, 13, 18-22. Long, I., Davis, I., Smith, R,, & Kirschenbaum, D. (1991, June). Demographic analysis of ACTU trial enrollment vs. incidence of AIDS in New York City. (Abstract S.D.770). Paper presented at the 7th International Conference on AIDS, Florence, Italy. Mientjes, G. H., Miedema, F., van Ameijden, D. J., van der Hoek, A. A., Schellekens, P. T. A., Roos, M., & Coutinho, R. (1991). Frequent injecting impairs lymphocyte reactivity in HIV-positive and HIV-negative drug users. AIDS, 5, 35-41. Miller, H. G., Turner. C. E, & Moses, L. E. (Eds.). (1990). AIDS: The second decade. Washington, DC.: National Academy Press. Miller, T. E., Booraem, C. D., Flowers, J. V., & Iversen, A. E. (1990). Changes in knowledge, attitudes, and behavior as a result of community-based AIDS prevention program. AIDS Education and Prevention, 2, 12-23. Nadel, M. V. (1990). National Institutes ofHealth: Problems in implementing policy on women in study populations (GAO Report No. T-HRD-90-50). Washington, DC: U.S. Government Printing Office. National Commission on AIDS. (1993, June). AIDS: An expanding tragedy. Rockville, MD: CDC National AIDS Clearinghouse. Osborn, J. E. (1991). Prevention: Can we mobilize what has been learned? In N. F. McKenzie (Ed.), The AIDS reader: Social, political, ethical issues (pp. 366-375). New York: Meridian. Padian, N. S., Shiboski, S. C., & Jewell, N. P. (1991). Female-to-male ratio transmission of human immunodeficiency virus. Journal of the American Medical Association, 266, 1664-1667. Pavia, A. T., Benyo, M., Niler, L., &Risk, I. (1993). Partner notification for control of HIV: Results after two years of a statewide program in Utah. American Journal of Public Health, 83, 1418-1424. Pearl, M., Banzhaf, M., Leger, A., & Long, I. (1992). Women in U.S. government clinical trials. (Abstract Po.B.3866). Paper presented at the 8th International Conference on AIDS, Munich, Germany. Peterson, L. R., White, C. R., & The Premarital Screening Study Group. (1990). Premarital screening for antibodies to human immunodeficiency virus type I in the U.S. American Journal of Public Health, 80, 1987-1090. Rodin, J., & Ickovics, J. (1990). Women's health: Review and research agenda as we approach the 21st century. American Psychologist, 45, 1018-1034. Rogers, D. E. (1992). Report card on our national response to the AIDS epidemic—Some A’s, too many D’s. American Journal of Public Health, 82, 522-524. Schroeder, P., & Snowe, O. (1990, July). The women’s health equity act of 1990. Washington, DC: Congressional Caucus on Women's Issues. Selwyn, P. A., Budner, N., Wasserman, W., & Arno, P. (1991). Prospective study ofprimary medical care utilization by HIV+ and HIV– intravenous drug users in a NYC methadone maintenance program. (Abstract M.D.4145). Paper presented at the 7th International Conference on AIDS, Florence, Italy. Stein. Z. A. (1990). HIV prevention: The need for methods women can use. American Journal of Public Health, 80, 460-462. Steinberg, J. (1994, January). A sex survey by any other name. Journal of NIH Research, pp. 25-26.

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About the Authors Stacy Broun, Ph.D., is a licensed psychologist in private practice in Dallas. She is on the faculty of the University of Texas Southwestern Medical Center at Dallas, where she holds the position of Clinical Assistant Professor of Psychiatry (Psychology). Her work with HIV disease began in 1985, when, as Assistant Director ofMental Health Services at SMU, she formed a campus AlDS education committee. In her private practice. she has been treating men, women, and children affected by HIV disease since 1987. Dr. Broun is a co-founder of AIDS Support Dallas and a former member of the AlDS Task Force of the First Unitarian Church of Dallas. She currently serves on the underwriting board of the Nelson-Tebedo Clinic. She is also a regional trainer for the American Psychological Association’s Project HOPE (HIV Office for Psychology Education). Vivian Brown, Ph.D., Is President and Chief Executive Officer of PROTOTYPES, a Center for Innovation in Health, Mental Health and Social Services that she founded in 1986. Dr. Brown also holds the position of Associate Professor in the Department of Psychiatry at UCLA. She has authored more than fifty works and has served as a consultant in the areas of health, substance abuse, and mental health to many organizations and has been appointed to federal, state, and county advisory and review committees. Recently she was presented with the McNeill Award, a national honor given jointly by the American Psychological Association and by the American Psychological Foundation in recognition of her pioneering efforts and innovative work in the field of community mental health. In 1985, Dr. Brown was presented with the Boots Jones Humanitarian Award for Lifetime Services by the Los Angeles Commission on Assaults Against Women. Michael Conard, M.Sc., is an adjunct Assistant Professor in the School of Architecture at Columbia University and a practicing architect and urban designer in New York City. He received his degree from Columbia University and is interested in studying urbanism. Helen L. Coons, Ph.D., is a clinical psychologist with research, clinical, and teaching expertise in the psychosocial aspects of women’s health. She is Director of Evaluation at The Health Federation of Philadelphia, Inc., where she oversees a federally funded project under the Ryan-White Care Act targeting primary care and care coordination for adults with HIV/AIDS, and HIV risk-reduction counseling at seven community health centers. In addition, Dr. Coons is principal 229

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investigator of a NIMH-funded grant that assesses the health, mental health, and social service needs of African-American families living with HIV/AIDS. She is also a Clinical Assistant Professor, Department of Psychiatry, Medical College of Pennsylvania and Hahnemann University. Anke A. Ehrhardt, Ph.D., is the Director of the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute and a Professor of Medical Psychology in the Department of Psychiatry at Columbia University. Dr. Ehrhardt’s interests include: HIV prevention programs for women, infected and uninfected; gender differences in sexual risk behavior; and issues of human sexuality as they relate to behavior change. Kathleen A. Ethier, Ph.D., received her doctorate in social psychology from the Graduate School and University Center of the City University of New York. She is an Associate Research Scientist in the Department of Psychology at Yale University. Dr. Ethier’s research interests primarily concern women and HIV/ AIDS, with a special interest in the public policy arena. She has also worked for a number of years on issues around self and identity, particularly for women and minorities, and relationships between identity and health. In addition to involvement in a number of research projects. Dr. Ethier is Co-Principal Investigator and Project Director of a multi-site study concerning the evaluation of HIV counseling and testing policies for pregnant women and funded by the Centers for Disease Control and Prevention. Barbara Greenberg, Ph.D., M.Sc., is an Assistant Professor/Epidemioiogist in the AIDS Research Program of the Department of Epidemiology and Social Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York. She has been working on HIVlAIDS epidemiology since 1988 and much of her current work focuses on women and HIV/AIDS. Jeanette R. Ickovics, Ph.D., obtained her doctorate in applied social psychology in 1989 from George Washington University, and completed her postdoctoral training in health psychology at Yale University with Judith Rodin. She is currently an Assistant Professor of Medicine and Psychology at Yale University. Dr. Ickovics’ health research focuses on women and HIV/AIDS and, more generally, on the interaction of biomedical and psychosocial factors that promote good health and recovery. Dr. Ickovics is the recipient of grants from the National Institutes of Wealth, the Centers for Disease Control and Prevention, the World Health Organization, the Spring Foundation, and the American Foundation for AIDS Research. She was the recipient of a Scholar Award from the American Foundation of AIDS Research (1993-1996), and received the 1991 Distinguished Publication Award from the Association for Women in Psychology. Dr. Ickovics’ interest in public policy was fostered during a Legislative Fellowship sponsored by the American Psychological Association and an internship in the U.S. House of Representatives; more recently she has consulted with the U.S. Public Health Service and the Institute of Medicine on issues related to women with HIV.

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John R. Jemmott III, Ph.D., earned his doctorate in Psychology from the Department of Psychology and Social Relations, Harvard University. He is currently Professor of Psychology at Princeton University where he has taught Health Psychology and Quantitative Methods since 1981. Dr. Jemmott was a National Science Foundation Graduate Fellow and is currently a Fellow of the Division of Health Psychology of the American Psychological Association. Dr. Jemmott has served on the Committee on Psychology and AIDS of the American Psychological Association and is currently on the AIDS and Immunology Research Review Committee of the National Institute of Mental Health. Dr. Jemmott has been the recipient of several grants from the American Foundation for AIDS Research, the National Institute of Child Health and Human Development, and the National Institute of Mental Health to conduct research designed to develop and test HIV risk reduction interventions. His current research revolves around the prevention of pregnancy, sexually transmitted diseases, including HIV, and violence-related injury among adolescents. Sharon Rae Jenkins, Ph.D., received her doctorate in Personality PsychoIogy from Boston University. She bas taught at the University of California, Santa Cruz, and at the California School of Professional Psychology, Berkeley/Alameda, where she took a postdoctoral certificate in clinical psychology. She has been a NIMH Postdoctoral Fellow and Assistant Research Psychologist at the University of California, Berkeley’s Institute of Human Development. Currently she is an Assistant Professor in the Clinical Psychology program at the University of North Texas. Claude Ann Mellins, Ph.D., is an Assistant Professor of Clinical Psychology in the Department of Psychiatry at Columbia University and a research scientist at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute. She is also the co-founder and co-director of the Special Needs Clinic, a mental health clinic for children and families affected by HIV disease at Columbia Presbyterian Medical Center. Dr. Mellins received her doctorate from the University of Southern California. Research interests include: models of stress, coping and family mental health, the impact of HIV on children and families, and HIV intervention/prevention research. Sutherland Miller, Ph.D., is a research scientist at the HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute. He has created HIV prevention programs for runaway youth, gay/lesbian/bisexual youth, youth whose parent is living with AIDS, Latina girls and their mothers, HIV-positive women, and gay couples of mixed status. He has also been co-principal investigator on numerous HIV-relatedresearch projects. Dr. Millerestablishedthe counseling center at Columbia College, directed SoundView Throgs Neck Community Mental Health Center, administered the Western Region of the UMWA Health and Retirement Funds, and was commissioner of mental health for Colorado and Vermont. Ne received his doctorate in psychology from Columbia University in 1961.

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Suzanne Miller, Ph.D., is Senior Member and Director of Psychosocial and Behavioral Medicine at Fox Chase Cancer Center. She also holds the positions of Adjunct Professor of Obstetrics and Gynecology at Temple University; Adjunct Professor at the Fels Institute for Cancer Research and Molecular Biology, Temple University; Adjunct Professor of Psychiatry at the University of Pennsylvania/ Hahnemann University Hospital; Adjunct Professor of Psychiatry at The Medical College of Pennsylvania; and Associate Member of the Institute for Health, Health Care Policy, and Aging Research at Rutgers University. Dr. Miller’s research interests center on the cognitive-affective processing of threatening health information and the implications for the design and assessment of interventions to facilitate adherence, adjustment, and decision making in a variety of medical contexts, with a special focus on at-risk and underserved populations. Janet S. Moore, Ph.D., earned her doctorate in Social Psychology from the University of Georgia in 1986. She began work in the Division of HIV/AIDS in January 1990. Since then, she has conducted studies on HIV risk among Peace Corps Volunteers and Hispanic women. Since 1991 she has served as a Project Officer for a longitudinal multi-site project of HIV-infected women to examine the biological, social, and psychological factors associated with HIV infection and progression in women. She has also served as a Project Officer on a study of HIV transmission and safer-sex practices among HIV-discordant couples. She currently is Section Chief in the Social and Behavioral Studies Section of the Epidemiology Branch, Division of HIVlAIDS Prevention, CDC. Debra A. Murphy, Ph.D., is an Associate Research Psychologist at UCLA’s Neuropsychiatric Institute. Dr. Murphy has been involved in HIV/AIDS primary and secondary prevention research for the past 6 years; she has published a number of HIV-related papers. She currently is a Principal Investigator on the NICHD Cooperative Agreement Adolescent Medicine HIV/AIDS Network—the first study to look at HIV disease progression in adolescents. She is the Director of the Health Risk Reduction Projects, in which she oversees several HIV research projects, including an evaluation of a psychosocial intervention for mothers with AIDS and their seronegative adolescents; a secondary prevention study for HIVinfected adolescents; and an investigation of how young children (6-12) are dealing with having a parent with AIDS. Lucile Newman, Ph.D., is a professor of Anthropological and Community Health in the Department of Community Health at Brown University. She is also a consultant to the HIV Center for Clinical and Behavioral Studies. Dr. Newman received her doctorate from the University of California in Anthropology. Research interests include: human reproduction and cross-cultural perspectives on HIV. Judith Rodin, Ph.D., is the seventh president of the University of Pennsylvania. Elected by the Board of Trustees on December 16,1993, she began her duties on July 1, 1994. The first Penn alumna to be named president of the University,

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Rodin graduated with honors In 1966 with a B.A. in psychology. She holds faculty appointments as a Professor of Psychology in the School of Arts and Sciences and as a Professor of Medicine and Psychiatry in the school of Medicine. She returned to Penn after 22 years on the faculty of Yale University, where she was provost from 1992 through 1994. Rodin serves on the boards of Aetna Life & Casualty Company, Air Products and Chemicals, Inc., Catalyst, the Greater Philadelphia First Corporation, and the Brookings Institution. She has been elected to the Institute of Medicine of the National Academy of Sciences, the American Academy of Arts and Sciences, and the American Philosophical Society. Currently Rodin serves on Resident Clinton’s Committee of Advisors on Science and Technology and as the chairman of the Universities Research Association Council of Presidents. For many years, she chaired an international research network studying health and behavior for the John D. and Catherine T. MacArthur Foundation. After earning her Ph.D., in psychology from Columbia University in 1970, she joined the faculty of New York University as an Assistant Professor of Psychology She moved to Yale in 1972, was promoted to Associate Professor in 1975, named a full Professor of Psychology in 1979, and added the title of Professor of Medicine and Psychiatry in 1985. Prior to her appointment as Yale’s provost in 1992, she served two years as chair of the Department of Psychology and one year as Dean of the Graduate School of Arts and Sciences, Renowned for her work on the relationship between psychological and biological processes in human health and behavior, Rodin has published more than 100 articles in academic journals, contributed chapters to numerous publications. and authored or co-authored ten books. Her husband, legal scholar Paul Verkuil, is the former president of the College of William and Mary and served as the chief executive officer of the American Automobile Association. They have three children. Mary Jane Rotheram-Borus, Ph.D., is a Professor of Clinical Psychology and Director, Clinical Research Center, in the Division of Social and Community Psychiatry, Neuropsychiatric Institute, University of California, Los Angeles. Dr. Rotheram-Borus received her Ph.D., in clinical psychology from the University of Southern California. Her research interests include HIV/AIDS prevention with adolescents. suicide among adolescents, homeless youths, assessment and modification of children’s social skills, ethnic identity, group processes, and crossethnic interactions. Dr. Rotheram-Borus has received grants from the National Institute of Mental Health to study HIV prevention with adolescents, the chronically mentally ill, and persons with sexually transmitted diseases; to study interventions for children whose parents have AIDS and for HIV-positive adolescents; and to examine national patterns of use, costs, outcomes, and need for children’s and adolescents’ mental health service programs. In 1986, her work on suicide prevention was

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selected as the Outstanding Child and Adolescent Mental Health Program by the New York State Department of Mental Health and her assertiveness training with children was chosen as an exemplary model by the American Psychological Association. Her research also has been funded by the National Science Foundation, National Institute on Drug Abuse, Society for Research in Child Development, and the W.T. Grant Foundation. Paula Schuman, M. D., is an Assistant Professor of Medicine in the Division of Infectious Diseases at Wayne State University School of Medicine. She is Director of Women’s Studies for the Detroit Medical Center AIDS Program and Principal Investigator of the HIV Epidemiology Research Study (HERS) at the Detroit site. Dawn K. Smith, M. D., M.S., M.P.H., is currently a medical epidemiologist in the Division of HIV/AIDS Prevention at CDC, where she coordinates the HER Study, a multi-site longitudinal study of the effects of HIV-infection on women. She also serves on the Executive Committee of the NIAID-funded women’s HIV cohort study, the WIHS. Early in her CDC career, she led the field epidemiology investigations of idiopathic CD4+ T-lymphocytopenia (ICL) and, prior to coming to CDC co-directed a study of the social health and development of infected and uninfected children born to HIV-infected mothers in Chicago. She maintains a strong research interest in the intersections of race/ethnicity, social class, injection drug use, and the HIV epidemic. Dr. Smith received her M.D. from the University of Massachusetts Medical School and went on to complete an M.P.H. in Public Health Policy and International Health, and an M.S. in Clinical Research Design and Statistical Analysis at the University of Michigan. A family physician, Dr. Smith practices part-time, providing outpatient care to HIV infected women at Grady Hospital in Atlanta. Before coming to CDC, she had practiced medicine in a Native American community and in an urban clinic with Hispanic, Vietnamese, and African-American families. Liza Solomon, M.P.H., received her masters in Health Services and her doctorate in Health Policy at the Johns Hopkins School of Hygiene and Public Health. Most recently Dr. Solomon was a member of the faculty of the department of epidemiology, where she was both co-principal investigator of the Hopkins site of the multicenter HIV study of women (the HERS study), and co-investigator of a longitudinal study of HIV infection in injection drug users (the ALIVE study). In addition to Dr. Solomons’ epidemiologic work, she is involved in HIV-related state legislative issues. Dr. Solomon was a founding member and president of the AIDS Legislative Committee, a statewide nonprofit advocacy and lobbying organization. Currently, Dr. Solomon is the Director of the AIDS Administration for the Maryland State Department of Health and Mental Hygiene. In this position she is responsible for directing state AIDS activities and administering the $18 million AIDS budget.

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Michael Stein, M.D., is a general internist and Director of HIV Activities at Rhode Island Hospital, Brown University. He has published extensively on the interface of HIV disease, primary care, and women’s health. He is the leader of the Women’s Research component of the RAND HIV Cost and Service Utilization Study. Dora Warren, Ph.D., is a research epidemiologist in the Division of Reproductive Health at the Centers for Disease Control and Prevention. She collaborates in studies of gynecologic manifestations of HIV infection, and reproductive and contraceptive decision-making in women. Gloria Weissman, Ph.D., is Deputy Director, Office of Science and Epidemiology in the Bureau of Health Resources Development at the Health Resources and Services Administration (HRSA). She is involved in evaluations of HRSA programs, particularly Titles I and II of the Ryan-White CARE Act programs, in the administration of the Special Projects of National Significance, and in the development of federal initiatives to improve access to care for underserved populations— particularly women, adolescents, and drug users—with HIV disease. Prior to that, Ms. Weissman spent 11 years at the National Institute on Drug Abuse (NIDA). There she was instrumental in the design and implementation of the National AIDS Demonstration Research Program, which developed and evaluated innovative, community-based outreach and prevention projects in 63 sites focused on populations at high risk for HIV: injection drug users, their sex partners, runaway and homeless adolescents, individuals in the sex industry, and crack users. She was also responsible for the development and testing of a comprehensive, model prevention program for women at risk for HIV and for coordinating NIDA’s efforts in the area of women and AIDS. Ms. Weissman has published and presented extensively on women, HIV, substance abuse, and access to care for underserved populations.

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Index Abortion attitudes toward, 176, 177 clinics, 3,22 decisions, 170, 172, 173, 174, 178, 181 elective, 175, 176, 177 and Hyde Amendment, 17 rates, 172, 174 and serostatus, 22, 171. 172-174,176, 177, 180, 181 Abstinence, 88, I99 Abuse, 110; see also Drug abuse by a partner, 35,55. 102 in foster care, 135 sexual, 89 substance,90,91, 97,98, 100, 102, 104, 111, 112, 114-117,156, 178, 179 Acculturation, 36, 70 Acute retroviral syndrome, 7 Adaptation processes of HIV+ women, 34, 39 and psychological functioning, 33 Addiction, 111 Adolescent children of mothers with AIDS, 142 condom use, 155,211 ethical dilemmas, 100, 101, 103 girls living with HIV, 87-104 legal issues, 3 sexual behavior, 155,210 training for service providers, 114 Adoption and family, 125, 128, 143, 146 by gay men, 135 of HIV-infected children, 134, 135 income from, 136 Advocacy, 118, 209, 223 Africa, 11, 23, 171 African Americans and abortion, 173-174 causes of death, 2, 12 families, 128, 139 HER Study, 194 HRSA Study, 112 impoverishment, I68 incidence rates, 3, 4, 126, 152, 168 role in the HIV epidemic, 133

AIDS Clinical Trials Group Protocol, 21, 22, 37, 76,119 AIDS Cost and Service Utilization Survey, 111 AIDS epicenters, 88 AIDS Project (KAP), 154 Aid to Families with Dependent Children (AFDC), 140,217,224 Alcohol abuse of, 57, 64, 65 and adolescents, 88, 90, 93, 100, 102 and condom use, 199 and injection drug users, 38 and responses to HIV+ diagnosis, 53 Altruism, 103 Anal sex, 5,15, 89 Anger, 95, 98, 138 and serostatus, 167 Anonymous testing: see HIV antibody testing Antibiotics and drug use, 57 and Latinas, 57 and oral contraceptives, 20 and pregnancy, 21 Antiretroviral therapy, 19 HER Study, 196-198 Asian, 194 Assault, 49 Azidothymidine: see AZT AZT, 13. 169, 183 ,212, 225 access, 110, 197 and ethnic differences, 66 and gender differences, 13, 36, 58, 111 and infection drug use, 110 and perinatal transmission, 38, 59, 94, 104, 118, 161 and pregnancy, 118, 161, 169, 208, 223 Bacterial pneumonia, 2, 11 Baltimore, MD, 2, 170. 172 Beck Depression Inventory, 65 Behavioral interventions, 210 Behavioral medicine, 41 Bereavement, 137 Biopsy and immunosuppression, 9 and Pap smears, 19 and recurrent CIN, 10

237

238 Birth control: see Contraception Birth defects, 179, 221 adolescents, 88, 90, 91 Bisexual, 200 disease progression, 1, 7 drug use, 90-91 transmission, 5, 15, Blacks: see African Americans Blood products and donors, 14, 15 as a mode of infection, 6, 10, 11, 152 and precautions with, 153, 162 and pregnancy. 21 and screening, 16, 190, 191, 211 and transfusions, 6, 7, 12 Boarder babies, I24 Breast cancer, 47, 68 Candida albicans, 195 and anergy, 194, 196 esophageal candidiasis, 10, 19, I87 as a gender specific infection, 222 and immunosuppression, 8, 9 invasive candida disease, 8 mucosal candida infection, 186 oral candida, 8 TH1 and TH2 cytokine production and, 200 vulvovaginitis, 19 Candidiasis: see Candida Caregiver, 155, 156 and cultural expectations, 41 diversity of, 128 extended family as, 138, 140 and foster care, 67 and HIV research, 35 legal role of, 146 men as, 140, 144 nonblood, 146 primary, 127, 128, 129, 132, 134, 138, 144, 145 relationship with, 61 secondary, 127, 128, 144, 146 selective kin as, 125, 129, 137, 138, 139, 144, 147 separation from, 124, 142 and social networks, 40 support from. 137, 138 tertiary, 127 Case management, 188 Casual partner: see Sex partner Caucasian, see also White community support, 36, 38 coping by, 45, 46, 66 feelings about serostatus, 153 health benefits, 33 HIV cases, I52 injection drug transmission, 56 marriage, 37 postdiagnosis survival time, 36

Index Caucasian (cont.) and stress, 67 studies of men, 36 CD4, 194; see also Lymphocyte count as an AIDS-defining condition, 2 and antiretroviral therapy, 196, 197 and AZT, 21 and gender differences, 8 and immune system functioning. 7 and incubation period, 12 low counts, 118, 154, 191 as a measure of clinical change, 189, 190 and oral lesions, 195 and pregnancy 8, 21 and progression of asymptomatic HIV, 16, 18 and risk for CIN, 9 Cervical cancer as an AIDS-defining condition, 2, I96 and disability, 217 invasive. 186, 196 precursors of, 9. 11 Cervical dysplasia and detection of, 19 HIV progression, I90 HPV and, 9, 186, 196 and immunosuppression. 9, 10 prevalence of, 9, 186 Cervical intraepithelial neoplasia and cervical cancer, 11 rate among HIV-infected women, 9, 10 Cervicovaginal lavage, I90 Cesarean section, 22 Chicago, IL, 15 Childbearing consequences of HIV on, 167 counseling during, 170, 171 and ethnicity, 168, I72 rate of AIDS cases from, 168 and serostatus, 3, I70 Children, see also Youths African American, 112 AIDS cases among, I68 caregivers, 113, 125, 127-129,132-140,142, 144, 145, 146, 147 death of, 109, I16 decisions about having, 89,90, 167, 170, 178, I80 of drug-using mothers, 115, 119, 141 financial assistance for, 136, 137, 140, 144, 145, 146.217 and foster care, 124, 127, 128, 134-137,141, 219 of gay couples, 141, 142, 143, 144, 146 and HER Study, 185, 195 HIV-infected, 123-147,154, 155, 156, 198 and HIV testing, 16 impact of risk behaviors on, I38 and Medicaid, I7 and perinatal transmission, 94, 153, 161, 173, 208, 213, 223 and removal from home, 197-198

Index Children (cont.) and selective kin, 125-128,129, 132-139,141, 143-145,147 of seropositive mothers 168, 169, 178, 179, 180, 181 and status disclosure, 137, 142 and vaccinations, 19 of young women, 87 Child Welfare Administration, 144, 146 Chlamydia, 20, 190, 196 Clinical drug trials, 208 Cohabitation, 139, 141 Colposcopy, 19, 190 Commercial sex worker: see Sex workers Community and consequences of disclosure, 53 and coping, 46, 47, 51, 66, 68 and drugs, 59 and ethnic minorities, 41, 47 and fear of transmission, 59 and gender differences, 35, 36 and health care 37 and HIV diagnosis, 52 HIV, 38, 51, 55, 63 and impact of death on, 62 and prevention programs, 57 and resources, 60 and support, 61, 70 Community Programs for Clinical Research on AIDS, 13 Condoms as contraception, 20 determinants of use, 200 and drug use, 90, 100 and ethical dilemmas, 100, 101 female, 210 and gender differences, 88 211 and HIV transmission. 6, 60, 162 and mental health interventions, 52 and minorities, 155 and pregnancy, 93 and serostatus, 89, 92, 171, 172, 198, 199 and sexually transmitted diseases, 20 skills for use, 98, I54 and young women, 88, 89 and youth, 92, 93, 102 Contraception 189 barrier methods, 171, 210 and childbearing age, 170 confidence about, 177 counseling about, 170, 171 and HIV testing, I6 nonbarrier, 102, 199 and serostatus, 20, 171 by women with AIDS, 171 Coping and commonalities, 66 for dementia, 116 families and, 126, 139

239 Coping (cont.) and gay issues, 90, 91 and gender differences, 63 with HIV, 58, 95, 96, 135-137, 138, 157 identification of strategies for, 44 injection drug users and, 67 interventions, 96-103 marriage and, 178 and the meaning of death, 62 social support and, 89, 176, 177, I78 and socioeconomic issues, 94, 140-141 Community Based Clinical Research Initiative, 221 Confidential testing: see HIV antibody testing Crack cocaine, 6. 141 Crisis points, 34, 48 Cryptococcosis, 10, 187 Custody, 143, 146 Cytomegalovirus, 18 and disease progression, 164, 187, 190 and gender differences, 10 and transmission risk, 155 ddC, 197 ddI, 36, 197 Death AIDS-related, 124, 142 and cancer, 11 as a cause of stress, 167 and dying issues, 157, 160 fear of, 161 feelings associated with, 160, 161, 164 of first Westerner, 152 and impact on family, 124, 143, 144 leading cause of, 2, 12, 13, 168 ofmothers, 124, 135, 138, 142, 144 multiple, 137 of one doctor’s patient, 151, 157, I60 and proximity to diagnosis, 15 and psychotherapy, 151, 157, 158, 160-164 and reactions to diagnosis, 92 and substance abuse, 95 ofyouth, 103 Demographics, 3 Denial about risk, 154 and coping, 110, 157, 159 and emotional distress, 167 and testing, 161 in the workplace, 156 Dental dams, 152, 162 Deportation, 43, 54 Depression and African-American women, 43 and AIDS accommodation syndrome, 48 and AIDS symptoms, 58, 163 and assessment of symptoms, I89 and coping, 63, 64, 67, 110 and ethnicity, 52 and gender differences, 44, 55, 63

240 Depression (cont.) and HIV+ mothers, 67, 155 and immune functioning, 34, 56 and reactions to diagnosis, 95, 167 and secrecy, 54 Scale, 197, 198 Didanosine, 19; see also Antiretroviral therapy Disclosure, 137, 142, 159, 191 and serostatus. 5 I of sexual orientation, 91 Discrimination, 144, 147 Disease course and gender differences, 1 and HPV infection, 9 and rate of progression, 11 and survival, 12 Disease progression, 190 acceleration of, 12 behaviors affecting, 19 and CD4 count, 8 determinants of, I86 among different groups, 186, 201 factors related to, 23 and gender differences, 7, 11, 13, 220, 222 markers of, 8, 190 and pregnancy, 8, 176, 179, 185 studies of, 186, 187, 190-201 virologic correlates, 200 Domestic partnership laws, 141 Drug abuse and coping, 39 and counseling, 95 and HIV+ pregnant women, 65 and Pap smears, 19 and psychosocial interventions, 61 Drug research, 22 I Drug treatment access to, 208 and childcare, 219 funding, 224 and HIV-related care issues, 16, 22 and HIV risk, 4 and needle exchange, 210, 211 as research variables, 188, I89 shortage, 2 IO and testing, 14 Drug use and access to HIV trials, 221, 222 clinical trials, 221, 222, 223 and condom use. I99 and coping, 39. 68, 111 and death, 137 and depression, 56, 197 discrimination, 197 and ethnicity, 35 and exchange, 112, 187, 194 and gay males, 90, 92 and gender differences, 69, 88, 89 HER Study, 189-201

Index Drug use (cont.) and HIV concerns, 66 and HIV risk, 68, 201, 209 and HIV status, 38 and HIV testing, 49 HRSAStudy, 112, 113, 118 illicit, 191, 199 impact on HIV, 200, 207 initiation into, 37 injection, 109, 110, 113, 115-117, 119, 120, 132, 141, 154, 168, 171, 173, 179, 186, 187, 193, 194, 196, 197, 199, 200, 209, 218 minorities and, 114 and needle exchange programs, 209, 210 and Pap smears, 19 byparents, 133, 134, 137, 141, 142 and positive life changes, 57 and pregnancy, 65, 170, 174, 219 and prenatal transmission, 141 prevention projects, 114, 115, 116, 117, 118 and psychosocial interventions, 61 and responses to diagnosis, 53 and safe sex, 100, 102 services, 110-120 and status disclosure, 54 suicide, 164 and transmission, 56, 65, 67, 89, 90, 152, 154 and violence, 135 and youths, 88, 93, 103, 137 Dysplasia: see Cervical dysplasia Education, 133, 136 about HIV, 34, 50, 61 and HIV treatments, 23 level of, 35, 39,46,47, 51, 56, 63 Project HOPE, 153 Employment discrimination, 167 and disease progression, 58 and minority women, 39 as a positive life change, 57 Epidemiology, HER Study, 185-201 of HIV, 87-91 Estrogenic, 8 Ethnicity and antiretroviral treatments, 36 and coping resources, 35, 41, 46, 44, 58 differences in, 52 and disclosure, 51, 55,59 generalizability of studies based on, 67, 68, 70 and health care, 39, 60 and immune functioning, 68 and pregnancy, 65 and role models, 37 and stress, 39,43, 67 Ethnic minority AIDS cases, 88, 152 and AIDS-related death, 142

Index Ethnic minority (cont.) AZT and, 16 and condom use, 155 demographics, 3, 22 gay/bisexual, 90 and neuropsychological testing, 191 and substance use, 90, 114 youth, 88 Europe and condom use, 93 and Kaposi’s sarcoma, 11 Families AFDC, 140 African-American, 128, 139 American, 142, 143 as caregivers, 124, 127, 134, 135, 137, 138, 142, 146, 147 cohesion, I38 communication, 138 and coping, 124, 139 definition of, 142, 143 extended, 124, 138, 139, 140, 146 Family Studies Project, 126-139 functioning, 124, 145, 146 and HIV rates, 123 Latina, 139, 140 nuclear, 124, 125, 128, 139. 140, 143, 145, 147 and selective kin, 125, 128, 129, 134, 135, 143, 145 structure, 124, 125, 126, 139, 140, 143, 144, 145 system, 123, 124, 127, 140, 141, 144 Family planning clinics and contraceptive methods, 20 and HIV-positive pregnant women, 21 and HIV testing, 15, 23 and seroprevalence rates, 3 Fellatio, 155, 162; see also Oral sex Fictive kin, 129 Florida, 2, 3 Foster care, 109, 127, 128, 134, 135, 143 authority, 137 of drug-using mothers, 141 and financial assistance. 124, 136, 146 and gay couples, 141 and role of secondary caregivers, 127 of selective kin, 134, 145 support groups, I45 Gay, 1, 70, I86 and acute HIV infection syndrome, 7 and AIDS-defining conditions, 11 and child care, 37, 135 and concern for others, 51 and coping with HIV, 34,35, 38, 53 and disease progression, 1, 11 and ethnic minorities, 36, 37 and gender differences, 62, 63, 64 and HIV communities, 36, 52, 55 and immune functioning, 34

241 Gay (cont.) and incubation period, 11, 12 and Kaposi’s sarcoma, 11 and marriage, 54 men with female partners, 15 parent,. 141-142,144 and psychosocial context, 39 and risk, 37, 215 rights, 141 and socioeconomic status, 35 youth, 88-92,96, 100 Gender differences and coping, 45, 51, 63, 64 in HIV research, 34, 40, 53, 69 and HIV testing, 49 and marriage, 37 and medical services, 35, 40, I13 and mortality, 218 and psychosocial context, 40 and risk, 112 Generativity, 89 Genetic counseling, 178, 180, 181 Genetic disorders, 178, 180, 181 Goal setting and interventions, 99 and substance use, 100, 102 Gonorrhea. 190, 196, 214 Grandchildren, 133, 134, 137, 140 Grandmothers, 144, 152 African-American, I40 as caregivers, 124, 135, 136, 137, 138 Gynecological symptoms, I89 Hamilton Anxiety and Depression Scale, 64 Hardiness, 103 Harm reduction, 116 Health belief model. 37, 182 Health care, 111, I 16, 2 14-215; see also Medical care access to, 39, 92, 110, 137, 157, 196-197, 208, 216-219, 223, 224 activists, 156 for adolescents, 91, 93, 94, 99 coverage, 49, 216, 218 and disclosure, 53, 55 and discrimination, 40 and disease progression, 52 for drug users, 110, 118, 201 gender differences in, 111 HER Study, 188, 192 for HIV-infected child, 127 and HIV testing, 214, 216 and life changes, 57 and minorities, 37, 39, 40, 55 for pregnancy, I69 regimes, 95, 96, 100 research, 200 skills, 97, 98 and socioeconomic status, 35, 145, 216

242 Health care provider, I88 and condom use, 20 detection of HIV, 14, 23 financial accessibility, 17 gender differences, 17 HIV testing, 15, 23 HIV treatment, 16, 23 and pregnancy, 20 and preventive health care, 19 and transmission. 6, 153 Health Resources and Services Administration (HRSA), 115, 116, 117, 118, 119 Helplessness, 95, 160 Hemophilia, 5 Hepatitis B vaccine. 186 HER Study, 23, 185-201 Herpes simplex virus, 10 Heterosexual condom use for, 6 gender differences, 5, 10 HIV testing, 14, 215 and homosexual relations, 141-142 incubation period. 12 injection drug users, 5 and Kaposi’s sarcoma, 11 risk behavior. 15, 215 survival rates, I3 transmission, 4, 5, 14, 55, 67, 109, 199 Hispanic: see Latino Hispanic Stress Inventory, 43 Histoplasmosis, 10 HIV antibody screening: see HIV antibody testing HIV antibody testing and adolescents, 91-94 anonymous, 214, 215 and blood transfusions, 6 confidential, 213, 214, 215 and drug treatment, 8, 113, 116, 118 early, 91, 92 gender differences, 5, 118 HER Study, 187, 188 history of, 112, 211 and HIV prevention, 93 HRSA Study, 4, 112-117 involuntary, 213-214,215 mandatory, 211, 212, 213, 214, 215, 223 newborn 211 opposition to, 91, 92 policies, 211, 2 13, 222 and pregnancy, 10, 11, 118, 119, 169-172, 208, 211, 212, 213 psychiatric effects of, 92 quality assurance of, 118, 120 and risk behavior, 91, 92, 93 service component, 9, 10, 12, 113, 117, 118 voluntary, 208, 212, 213 HIV counseling. 161, 211-213 adequacy of, 92, 118, I20 and battered women, 114

Index HIV counseling (cont.) and drug-using women, 118 gender differences in, 113-114, 118 and health care services. 23, 117 HER Study, 187 and pregnancy, 15, 20, 118, 171, 172, 208, 212-213 and risk reduction, 172, 215 and serostatus, 92, 172 for sex workers, 213 HIV dementia, 191 HIV Office on Psychology Education (Project HOPE), 153 HIV status: see Serostatus Homeless, 109, 112 Home remedies, 62 Homicide. 59 Homosexual: see Gay, Lesbian Housing and battered women, 114 for children, 139. 141 discrimination, I67 for drug users, 112-114, 119 policy, 125 poor, 136, 145 Houston, TX, 88 Human papilloma virus (HPV) and cervical dysplasia, 196 cervicovaginal lavage, 190 and CIN, 9 and coinfection, I96 prevalence, 9, 11, 186 as a risk factor, 152 Hyde amendment, 17 ICU psychosis, 163 Immune system and antigens, 195 and CD4 count, 7 and chronic illness, I63 and coping, 56, 68 and drug use, 200, 219 functional, 190 and HPV rates 9 and pregnancy, I69 response to exposure, 200 and vaccinations, 19 Immunology Center, 188 Immunosuppression and candidiasis, 8, 9 and dysplasia, 9, 186 and pregnancy, 8, 169 Incest, 156 Incubation period, 12 Injection drug use and clinical trials, 18, 221 and coping, 38 and depression, 56 effects on behavior, 90, 179 effects on HIV. 196

Index Injection drug use (cont.) and ethnic minorities, 168 gender differences and, 89 and health care access, 10, 110, 111, 118 and HIV testing, 14 loss associated with, 59 and noninfection, 193 of partner, 5-6 prevention programs, 23 and rates of infection, 4 rates among HIV+ youth, 93 as a risk factor, 7,49, 141, 168, 200 and STDs, 3 and stress, 297 and transmission, 4, 10, 12, 56, 65, 67, 109 and vaccinations, 19 among women, 4-6 and women with HIV, 1, 4, 14, 186, 199 lnner cities, 3, 216; see also Urban Insurance and ethnicity, 39 and gender differences, 35, 49, 58, 61, 216, 218 and health care access, 17, 218 and SES, 110, 153, 216 status, 111, 189 and testing, 14 Interferons, 8 Interleukins, 8 Invasive candidal disease: see Candida Involuntary testing: see HIV antibody testing Jersey City, NJ, 2 Kaposi’s sarcoma, 10, 11, 12, 187 Latino acculturation, 36 AIDS cases, 168 and beliefs about HIV, 62 causes of death among, 12 childbearing issues, 168, 179, 181 and concern for others, 50 and coping, 51, 67 and disclosure, 59 drug use, 4,56, 173. 174 family structure, 139, 140 and health care, 55 HER Study, 194 HIV rates, 3, 152 and mortality, 40 and poverty, 39 and serostatus, 53 SES, 126 and stress, 39, 43 Legal guardianship 136, 146 Lesbian and adoption, 142 and African Americans, 36 and dental dams, 152, 162

243 Lesbian (cont.) and domestic violence, 55 and HIV transmission, 154 HIV rates, 199 mothers, 141, 142 partners, 90, 199 seroprevalence, 155 substance use, 91 Life span, 95 Lymphocyte count, see also CD4 count and AIDS-defining condition, 2 and AZT, 21 as a determinant of change, 190 and gender differences, 8 and immune system functioning, 7 irnmunophenotyping, I90 and pregnancy, 8, 21 and progression of HIV, 16, 18 as a research variable, 191, 200 and risk for CIN, 9 Lymphoma, 10, 187

Mandatory testing, 212, 213, 215, 223 Marriage, 125, 128, 132, 140 Medicaid benefits, 2 I7 eligibility for, 17, 110, 111 and health care quality, 218 and gender differences, 218 and Hyde amendment, 17 and public policy, 224 and use of health care, 17 Medical care, see also Health care for adolescents, 91, 93, 94, 99 and awareness of serostatus, 91 coverage, 216, 218 for drug-using women, 110 and gender differences, 111,218 HER Study, 188, 192 for HIV-infected children, 127 “one-stop shopping,” 116 for pregnancy, I69 Medical manifestations, 1 Medical record abstraction, 192 Menstruation, 10 Methadone treatment, 186 Metropolitan, 3, 16 Mexican and disclosure, 53 and domestic violence, 54 Miami, FL, 2, 3 Microglobulin, 190 Microbicides, 210 Minorities: see Ethnic minority Miscarriages, 172 Modes of exposure, 4 Monogamy, 93 Mood disorders, 49, 64, 65

244 Morbidity and psychosocial context, 40 and suicidality, 64 Mortality and gender differences, I3 and infant mortality, 58 and medical care, 16 and Pneumocystis carinii pneumonia, 218 and psychosocial context, 40 rates, 2, 16 and women’s survival time, I2 Motherhood, 99 Mycobacterium avium intracellulare or complex, 187 National Commission on AIDS, 207, 211, 224 National Institute on Drug Abuse, 111, 118, 147 National Research Council, 207 Needle exchange and availability, 211 and drug treatment, 210, 115 and HIV prevention, 209, 210 and new infection rates, 90 Needle sharing, 23, 112 Needle stick, 6, 16 Neopterin, 8 New Haven, CT, 2, 112, 209 New Jersey, 2, 3 New York and abortion, 22 adolescents in, 87, 88, 91, 93, 96, 98 and causes of death, 2 Family Studies Project, 126 foster care in, 136 and gay couples, 141 HIV rates in, 87, I23 HPV infection, 9 Medicaid coverage in, 2 I8 Newborn Infant HIV Notification Act, HIV legislation, 214 and seroprevalence rates, 3, 88 single-parent households in, 124, 142 and survival time, 12 use of antiretroviral medication in, 197 Newark, NJ, 2 Nonbacterial meningitis, 7 Nonblood relatives, 139, 140, 143 Noncompliance, 22 North America, 11 Nuclear family: see Families Obstetrical care, 21 Opportunistic infection, I32 and denial, 157, 158 and risk, 8 and testing for, 161, 162 and treatment, 57 Oral candidiasis: see Candida

Index Oral hairy leukoplakia, 9 Oral lesions, 204 Oral sex, 99, 162 Oregon, 215 Orphans, 142, 168 Outreach and AIDS service provision, 115-117 and drug treatment, 2 I9 and research studies. 15, 112 Pap smear, 9,203 Partner notification and HIV prevention, 214 and risks for women, 214,215 and syphilis, 214 Paterson, NJ, 2 Pediatric HIV and the family 123-149 and reproductive decisions, 181 Peer group, 41 Peer networks, 117 Pelvic exam and AIDS-defining conditions, 187 and the HER Study, 189-191 and HIV-specific care, I6 Pelvic inflammatory disease, 10 Perinatal HIV transmission, I26 and AZT, 15 and beliefs, 176-179 and coping, 168 and counseling, 171, 174 and diagnostic procedures, 22 and pregnancy decisions, 170, 176-181 and rate, 169 and risk, 167, 173, 179-181 and ZDV, 169 Permanency plans, 142, 146 Personal relationships and disclosure, 54 and gender, 35 and socioeconomic status, 35 Physical abuse, 110 Pneumocystis carinii pneumonia, 197, 198 and AIDS-defining conditions, 11, 187 and cause of death, 15, 152 and gender differences, 13,218 and opportunistic infections, 19, 157 Poor, see also Poverty and depression, 55 and ethnicity, 39 and immune functioning, 68 and insurance, 49 and sexual relationships, 35 and stress, 43, 45 and treatment, 70 Poppers, 88 Postpartum women, 66 Poverty and access to health care, 216-217

Index Poverty (cont.) and antiretrovirals 21 and AZT trials, 208, 223 andAZT, 15, 16, 21, 116, 118, 161 and CD4 count, 21 and clinical trials, 18 and condoms, 93, 100, 199 and counseling, I 72, 173, 181 and decisions, 167, 168, 170, 172, 173, 177, 180, 182 and disease progression, 169, 170, 173, 174, 176, 178, 179, 180, 186 and drug treatment for, 1I6 and drug use, 2 I9 and effects of HIV on, 170, 171, 172, 176 and ethnic minorities, 39 and HIV progression, 8 and HIV risk, 201 and HlV screening, 89,94 and HIV testing, 14, I54 and HIV transmission, 186 and immunosuppression, 8 and impact on family, 124, 125, 140, 145 and mandatory HIV testing, 212, 213, 223 and minorities, 88 and perinatal transmission, 20, 94. 118, 169, 170, 174, 176-181 and psychosocial factors, 110 and quality of life, 68 and sex workers, 35 and stress, 35, 39, 58, 66.94 and substance use, 124, 132, 141 and termination, 22, 115, 171-174,176, 180 and testing, 119 and universal counseling, 208 and vertical transmission, I23 and voluntary HIV testing, 208 and youths, 9 I, 93 Pregnancy, 8, 14, 15, 16, 18, 20, 21, 22 Pregnancy terminations, 22; see also Abortion rates among HIV+ women, 22 Premarital screening, 212 Prenatal AZT. 59 and transmission, 59 Prenatal care and drug treatment, 219 and HIV testing, 212, 2 I3 and serostatus, 174, 181 Prenatal care clinics, I4 and asymptomatic HIV infection, 14 Prenatally drug exposed, 141 Prevention programs, 208-212 and government policy, 208-212 and HIV testing, 211, 212 and needle exchange, 209, 210 and women, 208-212 Prison, 213, 225 and HIV testing, 213

245 Projections, 2 and proportion of women with HIV, 2 Prophylactic treatments, 91 and pregnant youths, 91 Prophylaxis. 57 and PCP 197, 198 and pregnancy, 89 and treatment, 57 Prostitutes, 213, 215; see also Sex workers Psychological abuse, 110 Psychological interventions, 34 and stressors, 34 Psychopathology, 41 and assessment approaches, 41 Psychosocial context, 34, 39, 40 and gender differences, 34, 40 and women's lives, 39 Psychosocial interventions, 6 1 and disease course, 61 Public assistance, 60 and disability, 217 and foster care, 136, 146 and health care, 39 Public policy and childcare, 146 and HIV testing, 215 and prevention programs, 208, 209, 211 and recommendations for, 224 and women as vectors, 223 Puerto Rico, 140 and female injection drug users, 4 and seroprevalence, 3,4, 6 and sex workers, 6 Pulmonary tuberculosis, 2 and AIDS-defining conditions, 2 Race, 4 and AZT. 16 and needle sharing, 4 Racism. 45,46, 147 and chronic stressors, 45 impact of, 46 Rape, 49, 199,200 and HIV testing, 49 Rational suicide, 164, I65 Reinfection, 111, 112 Religion, 36, 59, 61, 66, 70 and coping, 66, 138 and ethnicity, 36 and grief, 59 and psychosocial interventions, 61 and risk behavior, 70 and treatment issues, I56 Reproduction behaviors, 171, 176, 181 decisions, 167, 168, 170, 172, 173 176, 177, 180, 182, 183 effects of AIDS/HIV on, 168-171, 176

246 Reproduction (cont.) intentions, 167, 176, 178, 179, 181, I82 outcomes, 176, 177, 179, 181, 182 Reproductive age, 15, 20, 167, 168 and health care, 20 and reproductive decisions, 167, 168 and testing, 15 Reproductive intentions: see Reproduction Retinopathy, 191 Risk behavior, I5 and AZT, 16 and partner’s risk behavior, 15 Risk factors, 5, 9, 14 and HIV testing, 14 and injection drug users, 5 and risk of CIN, 9 Risk history, 5, 14 and HIV testing, 14 and partner’s risk history, 5 Runaways, 88, 92 and disclosure, 92 seroprevalence rates, 88 Ryan White CARE Act, 112, 217, 219 Ryan White CARE Act Title I, I12 Ryan White Care Reauthorization Act, and mandatory testing, 212, 214

Safe sex, 36 and gay men, 36 Secondary caregiver, 128, 129 men as, 144 and permanency plans, 146 and selective kin, I27 Selective kin, 126-147 and adoption, 135 and African Americans, I40 and Child Welfare Administration, 134, 136 and ethnicity, 139, 140 and Family Studies Project, 126 and foster care, 135, 136 and gay men, 135, 141, 146 and grandmothers, 37 and Latinos, 140 and legal guardianship, 125, 135, 136 and lesbians, 141 and pediatric HIV, 125, 132 and permanency plans, 142, 146 and poverty, 140, 141 and primary caregiver, 126, 127, 129, 132, 136 and public policy, 146, 147 and single fathers, 132 and single females, 127 and social support, 127, 136, 138 and substance use, 141 versus nuclear family, 125 Septicemia, 13 and causes of death, 13 Seronegativity: see Serostatus

Index Seroposivity: see Serostatus Seroprevalence rates, 2, 3 and geographic locations, 2, 3 Serostatus, 7, 9, 20, 22, 23 and abortion, 22 and condoms, 20 and coping, 37 and heterosexual transmission, 5 and pregnancy, 15, 171, 179 and reproductive capacity, 20 and responses to, 50 and study controls, 7, 9, 23, 179, 180 Serostatus disclosure, 51 and relationship changes, 48 Serum IgA, 8 and disease progression, 8 SES: see Socioeconomic status Sex partner, 6, 14, 15, 20, 51, 65, 198 Sexual abuse, 110, 114 Sexual experimentation, 96 and secondary prevention programs, 96 Sexual harassment, 46 and chronic stressors, 46 Sexual history, 35 and personal relationships, 35 Sexual identity, 36 and stereotypes, 36 Sexual intercourse, 6,23 and age of initiation, 6, 23 Sexual orientation, 156; see also Gay, Heterosexual, Lesbian and disclosure, 91 and research studies, 153, I99 and selective kin, 143 and youth, 91 Sexual risk behaviors, 112, 196 Sexual transmission, 210 Sexually active adolescents, 211 and the HER Study, 199 HIV+ women, 171 and secondary prevention programs, 96 Sexually transmitted disease, 196, 225 Sex workers and increased risk, 5, 6 and mandatory testing, 215 and socioeconomic status, 35 Single mothers, 140, 142, 144 and permanency plans, 142 and poverty, 140 Single parents, and HIV+ women, 37 Social rewards, 97 and group interventions, 97 Social Security Disability, 217 Social Security Income, 136 Social services, barriers to, 112, 218-219 cuts to funding, 213 losing children to, 115

Index Social service provider, 13, 20 and diagnosis of HIV, 13 and pregnancy decisions, 20 Social support, 110, 187 and drug use, 117 and gender differences, 89 and group interventions, 97 and reproductive decisions, 175-179 and selective kin, 127, 136, 138, 145 Society, 94, 154, 159 consequences of infection, 87, 96 and homosexuality, 91 and public policy, 209, 224 and selective kin, 147 Socioeconomic status, 35, 225 and ethnicity, 36 and gender differences, 35, 63 and generalizability, 70 and integration of literature, 67 and psychosocial treatment, 61 and reproductive decisions, I78 and social context, 69 Special Projects of National Significance, 117, 119 Spirituality, 51, 61 and alternative medicine, 61 and responses to seropositivity, 51 Stamford, CT, 2 Standby Guardianship laws, 143 Stress inventories, 43 limitations of, 43 Stress management courses, 44 and coping inventories, 44 Stressor, 40, 94, I03 and adaptation processes, 54 of caregivers, 136-139 and coping, 42, 44, 56, 64, 66, 69 and cultural differences, 67 death as a, 97 and disclosure, 53, 65 economic, 145 and ethnicity, 39, 43, 45, 46 and family, 38, 45, 65, 66 and gender differences, 41, 45, 62, 63 and hospitalization, 48, 61 and psychological functioning, 33 and resilience, 41 and survival time, 34 Substance use, 90, 91, 93, 95, 96, 98-100, 102 family, 125, 145 and gay males, 90 and interventions, 95 parental, 124, 132, 138, 141, 145 rates among HIV+ youth, 93 and reduction of, 98-100,102 risk behavior, 138 and secondary prevention programs, 96 and transmission, 91

247 Suicide, 48, 53, 64, 66, 161 and gender differences, 64 and helplessness, 48 ideation, 162 and psychological stressors, 66 and psychosocial interventions, 60 rational, 165, 166 and responses to diagnosis, 53 and youths, 92, 93 Supernatural causes, 61 causes of HIV, 61 Supplemental Security Income, 217 Surveillance data and candida infection, 186 and causes of death, 2 Survival, 12 and disease course I2 and gender differences, 12, I3 Symptomatic, 96 and death, 97 and secondary prevention programs, 96 Syphilis, 20, 190, 194, 196, 214; see also Sexually transmitted disease and contraception, 20 and the HER Study, 196 Syringes, 209; see also Needle exchange and transmission, 90

Tertiary caregiver, 127 Testing, see also HIV antibody testing and availability, 15 of children, 16 and medical services, 14, 15, 23 and prenatal care, 15, 23 reasons for seeking, 14 and tuberculosis. 19 Tetracycline, 20 and oral contraceptives, 20 Thrush: see Candida Title IIIb Program of the Ryan White CARE Act, 116 Tobacco, 190 Toxoplasma encephalitis, 187 Toxoplasma gondii, 191 Toxoplasmosis, 10 and gender differences, 10 Transfusion, 5, 6, 7, 10, 11, 132 and disease progression, 7, 11 and gender differences, 11, 12 and HIV transmission, 5, 6 Transmission, 90, 91, 94, 97, 101, 123, 126, 141, 153, 186, 208, 213, 221, 224, 225 heterosexual, 109 injection drug use, 90, 109, 141 and lesbians, 153 and mandatory testing, 212 perinatal, 94, 118

248 Transmission (cont.) prevention of, 209, 211 and risk 111, 112 sexual, 90,91,97, 100, 101, 210, 211 vertical, 123, 126, 209, 212 women as vectors of, 208, 223 Treatment, 1, 3.4, 11, 14, 16, 18, 22, 23 and availability of, 16 and clinical trials, I8 factors affecting, 16, 23 gender differences, 1 interventions, 41 and mortality rates, 16 and persistent CIN, 10 and PID, 10 of STDs 3 substance abuse, 4, 14, 16, 22 Treatment interventions, 41 and ethnicity, 41 Trial, 76, 208, 212, 223-226 inclusion in, 208,221, 224 zidovudine, 2 I2 Trial 076,208 Trichomonas, I90 Trimethoprim/sulfamethoxazole, 21, 197 Unemployment, 39 and minorities, 39 Uninsured, 2 16 United States, 1, 2, 22, 23, 34, 38, 39, 123, 139, 154, 168, 171, 184, 213, 220, 225 and causes of death, 2 and drug use, 38 and epidemiology of AIDS. I and HER Study, 23 and HIV+ pregnancy, 168, 171 and minorities, 39 and transmission by breastfeeding. 22 Urban, 22; see also inner cities Urinary tract infections, I95 Utah, 2 I4

Index Vaccine, 186, 209,211 Vaginal virucides, 10 Vaginitis/vaginosis, 190, 220, 225 Vertical transmission, 123, 208, 223, 225 Violence, 59, 109, 114, 135, 145 domestic, 54, 55, 60 and drugs, 38 and ethnicity, 39 and injection drug users, 90 inner city, 136, 137 and prevention, 61 and risk factors, 69 and sex workers. 35 Voluntary testing, 15 and pregnancy, 15 Welfare, 17, 140, 144, 213, .217, 218 and Medicaid, 13 single moms, I44 White, 3, 7, 16 and AZT. 16 and homosexual men, 7 and incidence rates, 3 and needle sharing, 4 Women and AIDS Research Act, 221 Women of color, 46, 47 and coping style, 47 and racism, 46 Youths, 87-103;see also Children and condoms, 92, 93, 102 gay, 88-92, 100 minority, 88 and pregnancy, 9 1 and substance use, 90, 102 and suicide. 92, 93 Zalcitabine, 19 and antiretroviral medications. 17, 19 ZDV: see AZT Zidovudine: see AZT