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