HIV and AIDS : the impact on families in the Tampa Bay area

HIV and AIDS : the impact on families in the Tampa Bay area

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HIV and AIDS : the impact on families in the Tampa Bay area
Nichols, Janice E.
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Tampa, Florida
University of South Florida
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vii, 116 leaves ; 29 cm.


Subjects / Keywords:
HIV positive persons -- Family relationships -- Florida -- Tampa ( lcsh )
AIDS (Disease) -- Patients -- Family relationships -- Florida -- Tampa ( lcsh )
Dissertations, Academic -- Applied Anthropology -- Masters -- USF ( FTS )


General Note:
Thesis (M.A.)--University of South Florida, 1994. Includes bibliographical references (leaves 110-116).

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University of South Florida
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Universtity of South Florida
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All applicable rights reserved by the source institution and holding location.
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020825590 ( ALEPH )
33260812 ( OCLC )
F51-00112 ( USFLDC DOI )
f51.112 ( USFLDC Handle )

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HIV AND AIDS: THE IMPACT ON FAMILIES IN THE TAMPA BAY AREA by JANICE E NICHOLS A thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts Department o f Anthropology University of South Florida December 1994 Major Professor : Roberta D. Bae r Ph.D.


Graduate School University of South Florida Tampa, Florida CERTIFICATE OF APPROVAL Master's Thesis This is to certify that the Master's Thesis of JANICE E. NICHOLS with a major in Applied Anthropology has been approved by the Examining Committee on August 15, 1994 as satisfactory for the thesis requirement for the Master of Arts degree Examining Committee: Major Roberta D. BaerJ Ph. D. Member: Lorena PtfD. Member: Michael V. Angrosino, Ph.D.


DEDICATION To my husband, Dennis, who got me into this a n d who has been an unfailing source of encouragement and support. In honor of the families, for whom the words of Tolbert McCarroll in the prologue to his book, Morning Glory Babies, ring true: "Nothing concerning AIDS is simple. Those with AIDS and those caring for them must learn to float on random waves of misfortune and blessing."


ACKNOWLEDGEMENTS I would like to acknowledge and thank Dr. Roberta Baer, Dr. Lorena Madrigal, and Dr. Michael Angrosino for their encouragement and scholarly assistance with this thesis, often beyond the call of duty. I am indebted to Dennis Leoutsakas, Joyce Williams, and Errol Locker for their invaluable assistance in producing this manuscript. To all the clients and staff of Tampa AIDS Network and the University of South Florida Comprehensive Hemophilia Treatment Center who have helped and inspired me during this project, I extend my most sincere gratitude.


TABLE OF CONTENTS LIST OF TABLES LIST OF ABBREVIATIONS AND ACRONYMS ABSTRACT 1. INTRODUCTION 2 LITERATURE REVIEW The Nature of the Disease Historical Perspective Natural History Origins Scope Demographics Existing Research Biomedical Impact on the Family Implications for Anthropology Summary and Conclusion 3. METHODS 4. RESULTS Introduction Quantitative Methods Participant Observation Focus Group Oral Histories Summary and Conclusion Introduction Results of Quantitative Analysis iii iv v 1 4 4 4 5 7 7 8 10 10 11 26 30 32 32 33 35 36 37 40 41 41 41


Qualitative Data Analysis 46 Results of Participant Observation 46 Coexistence of Reality / Denial 47 Living with Ambiguity 47 Keeping Secrets 49 Isolation 51 Health Issues 51 Concept of Self and Family 53 Fear of Transmission 54 Feelings of Guilt 55 Concerns for Future 56 Neglect of Personal Needs 56 Financial Stress 57 Family Relationships 59 Communication 62 Positive Outcomes 65 Results of Focus Group 65 Neglect of Personal Needs 65 Family Response 66 Living with Ambiguity 67 Family Relationships 67 Financial Stress 68 Isolation 70 Altered Concept of Self and Family 70 Concerns for Children 71 Information Gaps 72 Concerns for Future 72 Results of Oral History Interviews 73 Mark and Denny 73 The Carrera Fam ily 79 The Duvals 89 Summary 96 5 CONCLUSIONS 98 Implications of Quantitative Data 98 Implications of Qualitative Data 99 Recommendations 1 00 Policy Level 100 Agency Level 101 Care-Giving Level 1 05 The Role of Anthropology 107 Summary 108 REFERENCES 110 ii


Table 1. Table 2. Table 3. LIST OF TABLES Tampa AIDS Network Client Demographics. Sex by Year. Tampa AIDS Network Client Demographics. Ethnic Groups by Year. Tampa AIDS Network Client Demographics. Risk Category by Year. iii 42 43 44


AIDS CDC HIV HRSA PCP PWA STD TAN USF WHO LIST OF ABBREVIATIONS AND ACRONYMS Acquired Immunodeficiency Virus Centers for Disease Control and Prevention Human Immunodeficiency Virus Health Resources and Services Administration Pneumocystis Carinii Pnuemonia Person with AIDS Sexually Transmitte d Disease Tampa AIDS Network University of South Florida World Health Organization iv


HIV AND AIDS: THE IMPACT ON FAMILIES IN THE TAMPA BAY AREA by JANICE E. NICHOLS An Abstract Of a thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts Department of Anthropology University of South Florid a Decemb e r 1994 Major Professor: Roberta D. Baer, Ph. D. v


During the course of my internship with the Tampa AIDS Network (TAN) in Tampa, Florida in the spring of 1993, I was able to conduct an examination of issues affecting families as they confront a d iagnosis of human immunodeficiency virus or acquired immune deficiency syndrome (HIV/ AIDS) in a family member. The purpose of the study was to demonstrate that although not all members of a family may have HIV disease, they do suffer from the associated illness. Additionally, there may be ways for policy makers, agencies, and those involved in the provision of care to respond to their needs without large investments of financial resources. In the course of the study, both quantitaive and qualitative data were gathered. Demographic data from TAN clients were statistically analyzed, illustrating changes in client composition over time in regard to the variables of age, gender, ethnicity and HIV risk category. Qual itative data was obtained through participant observation, a focus group session, and in-depth oral history interviews. Content analysis of the resulting data provided information about the lived experience of HIV/ AIDS within the context of the family. The demographic changes indicate the widening swath of the epidemic. Situations and experiences related by famil y members vary, but they face many common issues which cut across boundaries of class gender, vi


ethnicity, transmission risk category, and family type. Themes commonly expressed by informants in this research center around denial, struggles to live with ambiguity, altered concepts of self and family, concerns for the future, economic stress, keeping secrets, guilt, isolation, neg lect of self, and family tensions. The stresses and stigma associated with the disease often lead to difficulty in accessing support systems. The issues raised by family members can inform effective planning and provision of services. Anthropology, with its holistic approach and orientation toward qualitative methodologies, i s particularly well suited for gaining insight into the problems faced by families and for considering effective interventions. Abstract Approved: Major Professor: Roberta D. Baer,Ph.D. Professor, Department of Anthropology Date Approved: _ vii


1 1. INTRODUCTION This report details the findings of research conducted during the course of my internship with the Tampa AIDS Network (TAN) in Tampa, Florida in 1993. Utilizing both quantitative and qualitative research methods, I examined issues affecting family members in confronting a diagnosis of human immunodeficiency virus (HIV) or the subsequent development of acquired immune deficiency syndrome (AIDS) in a family member. I utilized Kleinman's disease/ illness construct to illustrate that although not all members of a famil y may have HIV disease, they do suffer from the associated illness, and that there may be ways for agencies to respond to thei r needs without large investments of financial resources. Throughout the history of the HIV/ AIDS epidemic, which was first recognized in 1981, most of the research emphasis has been placed in the area of biomedicine, and most of the funding for services is directed toward the individual with the disease Little attention has been concentrated on issues relating to the family outside of the family therapy literature. As HIV continues to make wider inroads into the population, and the disease assumes an increasingly chronic status, the stresses on family member s w ill multiply. In this thesis, I demonstrate the changing demographics of HIV/ AIDS and provide


2 the opportunity for family members to describe their experiences as they confront the epidemic in their daily lives The literature review provides an overview of the development of the HIV/ AIDS epidemic, existing research, and what is known about the impact of the disease on families. The particular strengths that anthropology can bring to HIV/AIDS research and intervention are discussed, along with suggested areas for anthropological involvement. The review of literature is followed by a description of the methods of data collection and ana lysis utilized in this research. T he research consists of a statistical analysis of changes in demographic data on TAN clients from 1986 through 1992, utilizing the variables age, sex, ethnicity and HIV risk category. In addition, participant observation, focus group, and topical oral history interview data were utilized in an exploratory study of famil y experiences. The fourth chapter describes the results of the data analysis. Patterns in the experiences shared by family members during participant observation activities are elucidated, along with information from the focus group pertaining to family issues. In addition, the experiences of three families living with HIV/ AIDS are highlighted through their oral histories. The concluding chapter discusses the issues raised by fami lies in this research and in the existing literature. Although many of these family experiences support the existing family therapy literature, an anthropologi cal perspective allows an additional step to be taken; an examination of HIV/ AIDS


3 in the full context of family life is related to the development and enhancement of support services for families as they confront the illness of AIDS A deeper understanding of the complexities that arise as HIV/AIDS intersects w ith the lives of real people allows an opportunity for systems, agencies, and ind ividuals who interact with families to develop more effective responses to family issues in the face of the epidemic.


4 2. LITERATURE REVIEW In order to appreciate the complexity of confronting HIV/AIDS within the context of the family, it is helpful to understand the various features of t he epidemic: the nature of the disease, the impact it has on families, the societal response to the epidemic, and the status of research in the fie l d This chapt er will address these issues, with a focus on the U S and will discuss the contributions of anthropology to the body of knowledge that has been established around HIV/ AIDS issues The Nature of the Disease Historical Perspective Throughout recent decades, advancements in med i cal science had given people in the developed countries a sense of control over nature, and a g u arded optimism regarding the potential for eliminating infectious d i sease and its related mortality {McCombie 1990:9). Then, in June of 1981, the Centers for Disease Control and Prevention {CDC) reported five cases of pneumocysti s carinii pneumonia {PCP) in previously healthy gay ma l es i n Los Angeles. Since


5 that time, the evolution of "a disease of society in the most profound sense" (Briggs 1961 :76) has occurred. The general population viewed this temporal sequence of the AIDS epidemic as spreading from gay men into other groups. This initial association with what many consider to be deviant behavior has had a significant negative impact on the response to the ensuing epidemic (McCombie 1990:11). It is now thought, however, that the virus was spreading unnoticed among heterosexual couples in Africa, the Caribbean, and South America by late 1970, and by mid 1980, it was found in heterose x ual populations throughout the world (Needle 1989: 16). It is not known when HIV first entered the United States, but it is thought to h ave been present by the early 1970's, and probably earlier (Feldman 1990b). Natural History Not until AIDS was reported in hemophiliacs and blood recipients did the idea that it might be due to a transmissible agent receive serious attention, even though it had previously been reporte d in clusters of sexual partners (McCombie 1990). The pathogen that has been identifie d as the causal agent of AIDS is the human immunodeficiency virus (HIV), and it is known to be transmitted from person to person through blood and sexual fluids. Over a period of years, it destroys T-4 lymphocytes in the body, whic h play a crucial


6 role in immune function. Depletion of these cells leaves the body susceptible to a wide range of diseases and opportunistic infections, which mark the progress from HIV infection to a diagnosis of AIDS HIV is a retrovirus, using normal cell processes to propagate itself, thereby complicating the search for a cure and decreasing the likelihood of the development of natural immunities in exposed populations {Schoepf 1991). More than thirteen years into the epidemic, science has not found a way to directly eliminate the virus from the human body. Powerful curatives are merely symptomatic treatments for people with AIDS, "temporary palliatives, for this is a disease whose symptoms are themselves diseases" {Bateson and Goldsby 1989:83). Since the beginning of the epidemic, predictions of HIV disease progression have altered. In 1984, the observed mean time from HIV exposure to AIDS diagnosis was 26.6 months. The estimated mean latency was five years, with an upper limit of 77 months {Feldman and Johnson 1986:4). In more recent years this grim picture has altered, with HIV infection increasingly becoming a chronic, long term disease. Although HIV infection has been viewed as ultimately fatal, research presented at the 1993 international conference on AIDS in Berlin is beginning to suggest that at least a small percentage of infected individuals may never develop AIDS {Conference News 1993).


7 Origins Although several scenarios have been offered, the reality is that the origins of HIV may never be known. Available information indicates that HIV is a very old virus of unknown geographic origin, with the current pandemic beginning in the mid-1970's (Mann 1988:3). AIDS has become a truly global pandemic whose burden must be shared. Feldman (1990a) offers the evolution of the HIV/AIDS pandemic as an example of the fragile ecosystem of our planet, in which technicological advances lead to improvements in our lives, but may also have the unintended consequence of furthering disease spread. The development of highways, railroads and jet travel, the rise in urbanism, and the psychological disruption of rapid change are examples of modern technological influences which have created an environment that increases vulnerability to the spread of disease (McElroy and Townsend 1985, Potts 1990). Whi le it is true that medical diagnosis and treatment is far better than it has been in the past, it is also true that viruses could not previously have spread to the pandemic proportions we currently find with HIV (Feldman 1990a). Scope The World Health Organization (WHO) reported that there were 611,589 identified cases of AIDS world-wide by the end of 1992. As a result of poor


8 diagnosis and underreporting, that number is considered a crude indicator; especially in developing countries the actual number of cases is likely to be four times greater. It is estimated that 13 million people world-wide have become infected with HIV, with one million new infections occurring in the last six months of 1992 (AIDS Daily Summary 1 /19/93). In the U. S., 242,146 cases of AIDS had been diagnosed through September 1992, accounting for more than half of the world's total reported cases (CDC 1992). By 1995, an estimated 500,000 Americans will have been diagnosed with AIDS (American Health Consultants 1993). The state of Florida alone had 24,976 diagnosed cases by the end of 1992, ranking third in the nation in total cases and second for pediatric cases (HRS 1993a). One thousand four hundred of those cases were diagnosed in Hillsborough County. Demographics AIDS takes its toll on a patient population during its most procreative and economically productive years (Feldman 1991 ). Forty-six percent of people with AIDS (PWA's) in this country are 30-39 years of age (CDC 10/92), and AIDS is one of five leading causes of death nationally among women of reproductive age (Pivnik et al 1991 :153). More than 80% of women with AIDS are in the peak childbearing years, between age thirteen and thirty-nine. Although HIV is found in all segments of the population, the disease rates


9 among African American and Hispanic populations in the U.S. are disproportionately high, with 30% of the total cases found in African Americans and 17% among H ispanic populations. Of the 27,831 women with AIDS in the U.S., 20,758 are non-white (CDC 1 0/92). Seventy-five percent of children with AIDS are African American or Hispanic (Needle et al.1989:28). Drucker (1991 :43,49) suggests that social class, race, age, and the association of these variables with the basic transmission risk behaviors (sexuality and drug use), form the context of the epidemic. He further notes that the unevenness of disease distribution and the degree of its impact on certain populations often reflect the historical injustice and inequality with which the U.S. continues to struggle. As noted by the National Commission on AIDS, HIV has had a disproportionate impact on disenfranchised populations: gay men, the poor, racial minorities, women, adolescents, and drug users -populations already having less than optimal access to resources (1989). More recently, the Commission has maintained that the epidemic should be considered a racial issue because its spread is spurred by discrimination, poverty, and lack of health services. One commissioner expressed concern that "once it is learned that the face of AIDS is darkening broad public support may fade" (Leary 1993). Singer ( 1992:8) states that ... just as liberty and justice are not equally distributed to all, neither is AIDS. For those who have the least liberty and justice have the most AIDS ..


10 With the current inner city epidemic of chancroid and other sexually transmitted diseases (STD) known to facilitate the spread of HIV, incre asing numbers of cases among heterosexual minorities in this country are anticipated {Singer 1992}. There is also concern that isolated American Native communities may be at high risk beca use the number of sexual partners under those circumstances is limited, allowing the virus to be transmitted throughout entire communities. The danger on many reservations and in native villages is compounded by poverty and high rates of STD (Mickleburgh 1993). Existing Research Biomedical Du e to public health concerns, a great deal of r esearch has been directed toward HIV and related viruses. This research has implications for virology, immunology, and oncology, and for increasing the understanding of molecular evolution {McCombi e 1990: 15}. In spite of attempts to integrate social and cultural perspectives into AIDS research the emphasis has remained on HIV as a biomedical phenomenon, with no mediating factors beyond the person carrying the virus (Pivnik 1991: 154). Macklin states that attention has largely focused on the person diagnosed with AIDS, and on treatment and care She observes that we are slowly accepting the need to focus on the full course of


11 infection rather than the end point, and that for every infected person there are numerous family members and loved ones whose lives are deeply affected, and who also need care and support (1989:5). Schoepf finds that the traditional investigations focusing on the epidemiological paradigm of host, disease, and environment furnish only a part-truth, blocking more complete understanding. This traditional approach tends to ignore the conditions produced by social relations and the investigation of specific social phenomenon (Schoepf 1991 :7545) Impact on the Family The long-term societal effects of the AIDS epidemic remain uncertain. Some predict minimal effects "despite the occurrence of many individual tragedies" and of economic hardship (Schoepf 1991 :755). Schoepf criticizes the shortsightedness of such a view, which as sumes that individual families and economic decline will not create social conflict. The nature of AIDS can be likened to a roller coaster, with recurrent cycles of illness and relative wellness. According to Frankenburg (1989), this is a difficult situation for even the most highly developed health care systems to deal with, and the traditional solution has been to fall back on the family for caregiving. Conant (1988) stresses that in U.S. the family generally consists of monogamous, reproducing parents and their children, while in other parts of the world it may be extended


12 generationally and laterally, perhaps including multiple spouses. Within the context of AIDS, particularly with its heavy impact on gay men in some areas, families comprised of lovers and close friends should also be considered. Bourne (1989) espouses the need to view families in an ecological way, not excluding anyone who may be a resource or who might be affected by the diagnosis. In the U.S., the National Commission on AIDS (1991) notes that "the face of AIDS will change ... Thus far it has focused its devastation predominantly on young men. In addition, it is also a disease that affects an entire family now, all too often, mothers, fathers, and children die swiftly, one following the other, leaving a few orphans as a grim reminder of what was once a family." In the western world, families and health ca r e providers are accustomed to looking after the dying old, while death of the very young is common in less developed countries. As Franken burg ( 1989) notes, few societies find it easy to cope with the deaths of young people in their prime Beer (1988: 171) discusses the many situations in which a single mother or both parents and perhaps their infant are terminally ill with AIDS. In many societies lacking adequate services, the grandmothers of these families are required to provide long -term care to those afflicted with an unfamiliar disease on which traditional remedies have no effect. They may themselves be at risk, with little or no knowledge of prevention. Beer ( 1988) suggests that AIDS could annihilate the parent generation in c los e communities, leaving a cohort of elderly women to


13 .sustain the major share of economic and organizational burdens for their family and community. In Zambia, one out of four adults between the ages of twenty and f ifty have HIV; it is predicted that 50% of these indivuduals will have AIDS within ten years, and that 40% of their children will also carry the virus (Feldman 1990a:3). Community care is often a euphemism for family care, and the burden of family care is placed on married women, who at age fifty may find themselves caring for spouse, grandchildren, remaining children, and widowed parents, as well as holding down a job outside the home (Frankenburg 1989:33). The generational s ignificance of the ep idemic and the impact on families has long been an obvious, but neglected, concern (Needles 1989:25). Several researchers have noted the dearth of studies relating to family issues around HIV/ AIDS Schiller (1992:243) suggests that an im age of drug users as being estranged from their fami lies has resulted in little research on family caregiving for drug users wit h HIV, although research on drug addiction indicates that family ties are s ignificant for d r ug user s (DeJa ria is e t al 1990). Macklin ( 1989:8-9) also notes that little is published on the effect of HIV infection on the family, or on the effect that fear of infection has on intimate relationships She found no d ata on the family roles of p e rsons with AIDS and little systematic research on reactions of families to an infected m e mber, or the interface between the HIV epidemic and human relat ionships. Noting that some projects with a family focus began receiving funding in 1988, Macklin ( 1989:8-9) observes that they were generally gear e d toward trai n i ng care providers i n


14 the family or investigating the natural history of the infection in family systems. The only literature found in this review that focused on families impacted by AIDS in the U.S. was Macklin's edited volume drawn from the experience of family therapy. When suggested sources on the topic were requested from Douglas Feldman (personal communication), Macklin's volume was his only recommendation for this research. The family has historically been a resource through crises, but anecdotal evidence from the U.S. and Africa suggests that in the case of AIDS, families may not be able to cope (Carballo and Carael 1988). Frankenburg adds that even under normal circumstances, the caregiving pattern is already difficult for women, particularly grandmothers, and that the effects of such stress may be seen in middle-aged ill health. He questions whether the pattern can be maintained in areas where AIDS is prevalent, or when these women themselves have HIV ( 1989:33). Beer ( 1988) also notes the burden on grandmothers in many countries. He maintains that in many countries, women generally have greater longevity than men and that men seldom play a role in domestic affairs and may be only marginally involved in economic production. It is, therefore, the grandmother who is likely to be the most active and competent person, though not always the most physically fit, to manage the family. This may have negative results for the children involved. Research on malnutrition and growth retardation indicates that total care of children by non-biological mothers can be a negative factor, especially when older persons become


15 principal caretakers; they may not be aware of the child's needs or able to provide constant care and stimulation ( Carballo and Carael 1988:89). The potential effects on the families impacted by HIV/ AIDS are many. Macklin (1989), Tiblier (1989) and Feldman (1991) discuss a variety of issues with which families must contend while adjusting to the diagnosis. They must accept the idea that the life of a family member may be shortened, often when in his or her prime. They are frequently confronted with the fact of a socially disapproved viral transmission route, perhaps learning of behavior that placed their loved one at risk at the same time they learn of the diagnosis. Parents of gay men frequently have difficulty accepting the reality of sexual orientation along with the HIV / AIDS diagnosis, and Mulleady et al ( 1989) found that many bereaved families of intravenous drug users with AIDS have serious difficulty in coming to terms with the circumstances surrounding the death. Couples with HIV must deal with the effect on their sexual life, and perhaps on their plans for childbearing. An HIV positive baby may be the first in the family to be diagnosed, and the parents may not be able to care for the infant if their own health deteriorates (Tiblier 1989). Arrangements for home care of an ill family membe r may be problematic. There are often issues of dis crimination agains t persons with HIV/AIDS that extend to the family, or may even occur within the family. Some family members may harbor a fear of infection by association with t he infected person. Macklin states "It is impossib le to overemphasize the profound


16 .emotional and economic costs of HIV infection for the entire family unit." (1989: 7) She emphasizes that it affects everyone who lives with and cares about the infected individual, and that those persons often must deal with denial, fear, anger, guilt, ambivalence, confusion, uncertainty, anguish, despair, secrecy, discrimination, changes in the relationship and in future goals, lack of access to services, high medical costs, and the potential loss of income and housing. She points out that the impact will extend beyond the death of the person with AIDS. Tiblier ( 1989:81) addresses other challenges that frequently confront families dealing with the crisis of HIV/AIDS, such as managing interpersonal conflict between the family and significant others involved with the ill person, confronting a time-limited push for reconciliation, preparing for loss, shifting family roles, and negotiating various health and social service systems. He notes that the roller coaster nature of the disease results in multiple stressors, with the psychological and relationship issues which are caused or stimulated by the disease often being as debilitating as the disease itself. Mattison and McWhirter (1990) discuss gay relationships in the context of HIV/AIDS. Noting the paucity of relevant information on male couples in behavioral science, they found that the daily lives of gay couples in relationships of greater than ten years duration share many similarities with married couples, and that many of the issues gay couples raised were similar to those which every couple deals with in adjusting to life -threatening illness


17 In addition, gay couples experience discrimination due to their sexual orientation as well as to the HIV infection. Some gay men previously were not open with their families about their relationship. Therefore, in order to gain emotional support from their families and acknowledgement of the spousal relationship, they are faced with finding ways to tell the truth without causing harm. All too often, estrangement is the result within families. In addition to estrangement issues, Niehaus {1990) notes that geographic distance is a frequent problem since many gays move away from their original communities to less stigmatizing environments. Friendship networks develop, with a decline in the significance of the biological family. Niehaus has found, however, that despite estranged relations, gay PWA's almost universally do ultimately turn to biological families, who then contribute some form of care. Casper (1986) finds that the gay community is reconstituting itself in the face of AIDS, taking on the family function for each other when support is not available from the biological family. The economic consequences of living with HIV/AIDS can be devastating for individuals and families (National Commission on AIDS 1992). According to Needle (1989), the mean lifetime cost of medical care for one person with AIDS is $80,000; the burden is shared between patients, families, employers, employees, taxpayers, health care systems, and government. The social, psychological, and economic needs of the individual, however, are most often absorbed by family and loved ones. Schiller { 1992:238), noting that economic


18 circumstances complicate the HIV picture, charges that socia l scientists do not address overriding issues such as housing shortages, unemployment, or racism; these factors increase the hardships faced by persons affected by the epidemic. Grandparents and other extended family often must assume economic responsibility for families impacted by HIV. Orphaned children, who may themselves be ill, place great stress on extended families in some areas (Feldman 1991 ) Family income and food resources are likely to decline, necessitating the involvement of the elderly in wage earning and food production (Beer 1988). Conant ( 1988) notes that the extended family in the U S. generally lacks the status it holds in Africa, and kin networks may not be in place provide for afflicted families Schoepf (1991) fears that the strain of care, economic stress, and stigma may be intolerable for many families; the end result may be orphaned children who are neglected and shunned. Infants with AIDS are often left in hospitals because few foster homes will accept them, and adoption is seldom considered (Conant 1988). Schneider (1991) stresses that children affected by HIV/ AIDS need protection from discrimination and exclusion. She also addresses the uncertainties that arise for themillness or death of parents, loss of residence, change in economics, and fears about their own health. Even in circumstances of economic independence, the emotional and social costs are considerable. Niehaus ( 1990:89) has found that professional persons with HIV/AIDS recogni ze the value of community services for others


19 and will serve as volunteers, but often feel that they have no need for the mutual support services; they tend to rely mainly on informal supports and private care. This reliance on family and friends over more formal sources of support can take its toll on the individuals involved. Niehaus suggests that families of professionals tend to be well educated regarding AIDS, and better able to provide money, time, and housing to the PWA than are poorer families, even though they are typically nearing retirement age. Many PWA' s want to return home to die, and families usually support this. This des ire may not be class -specific, but the possibility is class related. Unspoken conditions relating to privacy and protecting the family name are often set; even if the family accepts the sick person, they may fear that others will not. This fear may increase reluctance to utilize community resources, even if i t requires assuming debt (Niehaus 1990). Couples dealing with HIV/AIDS often have difficult decisions to make around sexual relationships and reproductive issues if risk of viral transmi ssion is to be avoided. Tension may arise in relationships with one infected partner around appropriate sexual expression (Bateson and Goldsby 1989). Carballo and Carael (1988) note the potential of AIDS to increa se mortality i n selected groups, affecting fertility behavior and child survival rates. Sibthorpe (1992:256) outlines obstacles for wome n in negotiating condom use, including passivity, powerlessness, low self-esteem, dependency on men, poverty, and economic insecurity. Sexual politics and mores in some


20 c .ultures may limit the negotiating power of women in relationships and increase their risk of exposure, and cultural concepts such as machismo may influence the receptiveness of men to the idea of safer sex practices (Schoepf 1988, 1992; Carrier 1989; Potts 1990). (Although the concept of machismo is frequently suggested as a deterrent to safer sex practices, further research might examine whether men in such cultures, when presented with a rational argument, would rather risk death than use a condom). Coping strategies for couples in Africa and the U.S. often include scapegoating, isolation, and violence (Conant 1988). Sibthorpe suggests interpersonal familiarity within a relationship as a factor that may increase the perception of safety in sexual relationships; this factor may be compounded by issues of attachment, commitment, exclusiveness, and personal risk denial ( 1992:263). According to Ehrhardt et a l. (1991 ), women whose partners have HIV/ AIDS and hemophilia may be at particularly high risk for acquiring the virus, in part because the problem is viewed as clinical rather than as a public health issue involving sexual behavior change, and because it is assumed that knowledge of risk is sufficient to result in safe practices. Condom use is not consistent in this group, being linked to the stigma of the disease and fear of rejection; it is a constant reminder of contamination and association with AIDS, and requ i res acknowledgement of disability (Ehrhardt et al. 1991 ). There are many comple x issues involved in being a chronically disabled person who has to cope w ith a deadly disease that


21 can be transmitted to one's sexual partner. As a result, couples may not discuss emotionally distressing topics, maintaining unspoken contracts that increase the likelihood of viral transmission. Female partners of hemophiliacs are more interested in support services and safer sex information than are the men with the disease (Ehrhardt et al.1991 :32). The partner may equate taking precautions with rejection of the relationship, while the hemophiliac may feel he is an innocent casualty of the epidemic, and that precautions constitute an additional and unfair penalty (Bateson and Goldsby 1989:1 09) Pivnik et al. ( 1991: 154) discuss reproductive decis ions re lated to HIV from an anthropological perspective. These decisions are made within the context of family and social relationships, economic circumstances, cultural influences, and evolving personal and social theories about AIDS, which may differ from biomedical explanations of the epidemic. These influences are often ignored by health care providers. Reproductive decis ion making is a complex process, involving the personal, social and cultural experiences of each individual. The authors acknowledge that being HIV positive does not necessarily deter women from having children, and they suggest that the public discourse on the subject reflects middle class values portraying women who do become pregnant as selfish and morally unscrupulous. Research suggests the cultural value of childbearing among many African an d Hispanic peoples and African Americans as a partial explanation of the frequency of childbirth within


22 HIV positive populations (Potts 1990; Pivnik et al 1991 ) Other cultural be liefs may also enter into reproductive and sexual decision making. Carballo and Carael ( 1988) suggest that patterns of marriage, divorce, and remarriage may change in some countries due to HIV/ AIDS. They note that where HIV prevalence is high, even low rates of separation and divorce followed by rapid entry into new relationships will increase the probability of viral exposure, and this could serve to increase mari tal stability. Mortality differentials between sexes could lead to decreased opportunities for remarriage. Noting that age at first marriage has increased in urban areas over the last twenty years, Carballo and Carael indicate that early marriages may increase if partners are valued because they are perceived as young enough not to have been sexually exposed to the virus. They also indicate that, in areas where neonatal mortality is high pressure to reproduce may be increased, leading to a cycle of debilitated mothers and increasing rates of infant mortality. Carballo and Carael also point out that heterosexual transmission of HIV is highest in areas where family planning has made fewest inroads. In low-fertility societies, fear of infection may further delay childbearing (Carballo and Carael 1988). The issues of social stigma and discrimination are significant for both the infected individuals and families dealing with HIV/ AIDS (Madison and McWhirter 1990, Altman 1987). Belinda Mason, a young wife and mother with AIDS who was past president of the National Association of People with AIDS, and who


23 on the National Commission on AIDS prior to her death last year, once stated "I used to hope that I would be able to live long enough to see my children ... accept and adapt to the inevitability of my death. More lately, I've been hoping that when I am gone, they wouldn't continue to be stigmatized by the shadow thrown by my public life" (National Commission on AIDS 1991). Sontag ( 1989) declares that emotional baggage travels with certain words, such as "plague, which are used in describing the AIDS experience; the metaphors attached to AIDS increase the stigma and should be abolished. Concern about the stigma and resulting discrimination surrounding HIV/AIDS takes its toll on people affected by the epidemic. Worth (1990), in his work with Puerto-Ricans and African Americans, found that stigma threatens ego strength and self-image, and may be responded to fatalistically. It carries the threat of severance from support systems, and fear that it will bring shame on the family and the community. As a result, there may be denia l of risk, and avoidance of discussion of sexual behavior and drug use. A number of anthropologists have described the evolution of discrimination and stigma surrounding HIV/ AIDS. Worth (1990:112), discussing culturally determined values and their influence on attitudes and perceptions of AIDS, notes that disease has been associated with isolation throughout history; there has always been an opposition between the healthy "us" and the diseased "them." He maintains, however, that i t was not until the rise of the JudeaChristian tradition that victims of disease began to be seen as


24 carrying personal guilt for their situation, an attitude reinforced by the discovery that venereal disease is sexually transmitted. Worth suggests that infectious epidemics predictably led to demands of isolation of the infected, or those perceived to be at risk and capable of transmission. AIDS has followed this pattern, resulting in unleashing of pent-up social hatred toward individuals seen as deviating from the norm. He notes that, as discrimination spreads, it ceases to be linked to individuals and extends to entire risk groups. The problem is exacerbated when the sickness tends to affect marginalized groups (Taylor 1990). McCombie (1990) attributes the excessive public concern and tendency to over-isolate the infection to its association with contagiousness and its ability to spread in a number of ways, along with its high fatality rate. Quam suggests that the infection evokes feel ings of pollution in American culture, which increases problems in dealing with the epidemic. He points out that non-western cultures often have mechanisms to solve such problems through ritual cleansing. These practices have decli ned in the West, leaving medical science to rid us of the consequences of polluting acts (Quam 1990:41 ). Many societies view epidemics as unnatural, often attributed to taboo violations. In western cultures, victim blaming and a view of disease as punishment from God are common. D isease is considered unnatural, with its origin best placed as far from the mainstream as possible (McCombie 1990: 15). Schiller notes that we are once again seeing a dreaded disease attributed to the "dangerous other," the culturally different and deviant. She ma intains that the


25 disease is linked with culture due to the epidemiologically constructed and popularized concept of high risk groups, and that risk is thus embedded i n thei r cultural identity. In some cases, sexual partners of persons born in some Caribbean or Central African countries perceived to be high risk areas have been stigmatized merely by those relationships (Schiller 1992:240-1). Quam maintains that the fear and discrimination around HIV/AIDS is reminiscent of past upheavals due to racial integration. In both instances, contact with stigmatized persons is perceived as pollution, with resulting fear often acted out in violence. Stereotypes of unbridled sexuality, disease, and other physical dangers are also common. He finds this similarity particularly disturbing because AIDS is increasingly associated with minorities (Quam 1990:41 ) Feldman (1990a: 5) describes AIDS as "dreadful," w ith the resulti ng bigotry and discrimination being as bad as the disease He suggests that AIDS is used as an excuse to forward sexually restrictive agenda regarding preand extramarital sex, homosexuality, and prostitution. People with increased knowledge about the epidemic and its surrounding issues are not more l ikely to have tolerant policy attitudes on those issues; having more tolerant attitudes leads them to become more knowledgeable (Ornstein 1992:262). Taylor ( 1990) suggests that many people respond negatively to AIDS more for its perceived association with marginal lifestyles than for any direct health threat to themselves. He maintains that moral judgements have influenced the public health response to HIV/ AIDS possibly more than has


26 scientific thinking about the disease, and that this atmosphere is as potentially harmful to societies as the disease is to people who carry it. According to McCombie (1990), public fear about contracting HIV/ AIDS through casual contact has been an important aspect of our cultural response to AIDS and this perception serves to increase the stigma and risk of discrimination for those in close relationship to someone carrying HIV. She notes that the resulting discrimination against people with AIDS or those perceived to be at high risk has become so commonplace that almost every medical or public health protocol mentions the phenomenon, and it is impossible to deal with HIV/AIDS without considering discrimination and confidentiality issues. Indeed confidentiality has become a major concern. Although health care agencies make claims of confidentiality, actual practice sometimes falls short of this ideal. As noted by Brown ( 1993), institutional and professional imperatives define and sometimes override normative c laims for confidentiality. She suggests that these imperatives include professionals' class-based assumptions about the patient's need for confidentiality, which may well d iffer from the feeling of that individual. Implications for Anthropology Anthropology has the opportunity and the expertise to make a profound difference in HIV/AIDS research. Feldman refers to the temporal and spatial


27 depth of the anthropological view, maintaining that this perspective has enabled researchers to see AIDS as a microcosm for understanding the human condition. He notes that formulating AIDS policy requires thi s broad understanding, and that anthropology is well situated, with its global and evolutionary perspective, to make a contribution. As noted by Nelkin et al (1991 ), the epidemic is freighted with profound soci al and cultural meaning, and interpretation of such data has long been the strength of anthropology. According to Singer ( 1992:90), the epidemic comes a t a time when anthropology has reached a "tentative moment," which he describes as "lacking in great theoretical debates" and unified i deas. He suggests that increasing social problems have increased the demand for anthropological relevance and heightened the awareness of socia l respo n sib i lity within the discipline, and that applied anthropology now has particular relevance. Both Singer and Farmer ( 1990) point out that those most at ris k of HIV infection are the groups that have long provided the livelihood for anthropology. Expertise in cultural processes and social and cultural change theory has relevance in the age of AIDS. Medical and applied anth ropology should be particularly interested in the issues generated by the epidemic ( Gorman 1991; Feldman 1990; Bolton 1989). According to Feldman (1990), anthropologists have learned that human behavior is explainable and predictable; AIDS is a cultural phenomenon, and the social patterning of the epidemic can be explained and understood. Schiller ( 1992) also discusses the importance of


28 culture in relationship to HIV/AIDS. She notes that viral spread largely results from human behaviors that vary crossculturally, and that much attention is focused on the cultural values of the infected rather than on the larger issues of gender and power. Schiller stresses the importance of contextualizing culture because risky behavior is embedded in the intersection of culture, economic conditions and power relationships. Anthropological studies have had a significant impact on the control of a number of communicable diseases, such as schistosomiasis, smallpox and malaria (Schoepf 1991), and they have brought attention to pluralistic health beliefs and behaviors. The discipline can have a significant impact on HIV/ AIDS, as well. Social factors in the spread of disease, as well as pluralistic concepts of health and illness, are sometimes ignored in medical research and this failure can result in unintended effects (Schoepf 1992:90). Bolton ( 1989) points out that anthropology is a repository of ethnographic information about cultures and societies which should be utilized in program planning and in understanding the manifestations associated with HIV/ AIDS. Meanings are hard to grasp with survey research, and the epidemic "may have conferred a degree of legitimacy on ethnographic and other qualitative approaches among those who heretofore saw little scientific validity in so called soft methodologies" (Singer 1992:90). Th e valu e of ethnography lies in its breadth and depth compared to survey research. It i s broader in that it relates sexual behavior to relationships derived from social structures, and it is deeper in that


29 informants are able to explore motivations and constraints to change. Contextual meanings allow explanation of what people do and why they may cling to risky behaviors (Schoepf 1988). Bolton ( 1992a) remarks on problems in acquiring funding for qualitative research, noting that it may be necess ary to piggyback onto projects b a sed on other, more accepted methods. Carrier and Bolton (1991) have found that ethnographic research has been most commonly used in the area of intravenous drug users and AIDS in the U S and that it w i ll most l i kely receive interest in the study of bisexual males in the U.S. and heterosexual couples and children in Africa. Other implications for future res e arch and intervention are suggested in the literature. Needles (1989) specifies the importance of d etermining the demands associated with HIV infection o n members of various risk groups and their families. Examples include the potential impact of caregiving on family members and on the physical, p sychological a nd overall f amily functioning; the description and understanding of coping strategies available to and utilized by families; and the r e lationship between family and community material resources, family functioning, and the physic al and psychological well-being of the infected family member.


30 Summary and Conclusion AIDS is truly a disease of society, and is having a profound impact on our institutions. Traditional services will not meet the pressures AIDS puts on the family and the health care system, and professionals will not be able to provide adequate care without the help of client's family, friends, and significant others (Tiblier 1989). As longevity with HIV infection increases, the stresses and demands placed on family units will grow. Policy makers and human service professionals must recognize that HIV exists within a significant social and emotional context, and must seek ways to support the family system to which the infected person belongs (Macklin 1989). Although the family is central to addressing the HIV/AIDS epidemic, little attention has been focused in that area The holistic perspective of anthropology and its qualitative research expertise is needed in the illumination of issues affecting families in this epidemic. According to Feldman ( 1990b), no other issue has brought together so many different kinds of scientists and practitioners. The epidemic must be fought on a ll fronts, and an interdisciplinary approach will accompli sh this most effectively. Although much has been learned about it, HIV/ AIDS remains a tremendous public health threat and a challenge to medicine. It will require anthropologists working cooperatively with other scientists to find answers. Some think a vaccine or cure will eventually be found; this is a reflection of our


31 American cultural belief in the triumph of technology over natu re. However, a s McCombie points out, we must begin to understand the evolution of disease. Infectious agents will continue to adapt and evolve, evading technology. There may be a cure for this disease, but there will always be another. The best we can do is try to keep up with evolving d i seases, alleviate suffering, and e xami ne the processes through which perceptions of disease cause prej udice, social disruption, and cultural change (McCombie 1990:23). According to McNe ill "Infectious disease .. will last as long as humanit y i tself, and w i ll surely remain .. one of the fundamental parameters of human h istory." ( 1976: 291). As Singer states, "Be cause HIV infection is spread through socially structured, culturally meaningful behaviors about which there i s much sti ll to be learned the AIDS crisis presents a singular challenge to a n thropology t o prove its relevance." (1992:94).


32 3. METHODS Introduction The internship upon which this research is based was carried out through Tampa AIDS Network (TAN) during the spring semester of 1993. This private non-profit agency, located in Tampa, Florida, is the leading AIDS service organization in the Tampa Bay area. Between program inception in mid-1985 and the time of this internship, the organization had registered nearly three thousand persons with AIDS in its social services component. In addition, the agency had provided HIV/ AIDS counseling, support groups, and prevention education for thousands of others. Prior to beginning the internship experience, I had been employed by TAN for several months. In this half time position funded through a contract with the University of South Florida (USF) College of Medicine, I served as HIV risk reduction counselor for the USF Hemophilia Treatment Center. In January of 1993, this position expanded into the full time internship. The focus of the counseling position was on the prevention of HIV transmission by infected persons with hemophilia, which involved counseling single men, couples, and an occasional parent regarding the prevention of


33 sexual transmission and the maintenance of safer sex practices. Reinforcement of the use of universal precautions in the process of home administration of blood clotting factor also occurred, along with counseling on issues relating to promotion of health of infected individuals and their caregivers. Interventions took place in the medical clinic, at TAN, on home and hospital visits, by telephone and by mail. In addition, I instituted a newsletter targeting individuals and families living with hemophilia and HIV. In addition to continuing those activities involved in the hemophilia counseling pos ition, I undertook a number of other activities in order to carry out an exploratory study of the impact of HIV/ AIDS on families. A variety of methods, incorporatin g the interests of the agency and my own research interests, were utilized in a traditional anthropological approach toward gathering data on HIV affected families in the Tampa Bay area. Quantitative Methods The executive director of TAN was interested in a statistical analysis of client demographics over time in order to document changi ng needs for funding purposes. This information also served to illustrate that the epidemi c is expanding into a widening population, and that an increasing segment of the population is becoming affected.


34 In order to accomplish this analysis, a study of the demographics of TAN clients registered in the agency logbook between January 1986 and December 1992 was carried out, utilizing the variables of age, gender, ethnicity, and HIV risk category as defined by the Centers for Disease Control and Prevention (CDC). Complete data for other years were not available. Data for a total of 1,852 clients were analyzed statistically to determine whether significant changes occurred in the variables over time. There is some variation in the numbers of clients within each of the four variables due to la .ck of complete demographic information on every client. As a result of the low numbers of clients in other ethnic categories, only the African American, Hispan i c, and Caucasian groups were analyzed. By the same token, only the risk categories of gay, bisexual, intravenous drug user, heterosexual, and blood product exposure were analyzed. The blood product category combined transfusion recipients and people with hemophilia Although there were a number of children scattered throughout the data, there were insufficient numbers within the individual data cells to analyze this group statistically. Univariate analysis of the quantitative variable 'client age' was utilized, along with the Kendall Tau b correlation coefficient of age and year. Frequencies and percentages for the qualitative variables sex, ethnic group, and HIV risk category were calculated and compared. The data were analyzed using Chi-square values to test the assumption that there were no significant changes in these variables over time. For the variables ethnic group and risk,


35 the number of items having low counts necessitated the computation of Yates' correction for continuity in order to ensure validity of the findings. In my report to the agency, comparisons were made with Hillsborough County data on reported AIDS cases published by the state Department of Health and Rehabilitative Services, which gave an indication whether various populations of persons with AIDS were being adequately served by the agency. For purposes of this rese a rch, however, only the TAN data were utilized. Participant Observation Involvement with the agency prior to the internship experience had resulted in the establishment of rapport and credibility with many clients and family members. This was a definite asset in the gathering of qualitative data during the r elatively brief internship period Information concerning the experiences and needs of family members was gathered through participant observation in my counselin g role T his allowed sharing of sensitive information usually not uncovered through more structured means (Carrier and Bolton 1991). Bolton ( 1992b) notes the importance of engaging in activities with study participants in order to fully appreciate what one is observing and to learn what questions to ask. I found this level of involvement to be particularly helpful, especially when dealing with sensitive issues.


36 Participant observation also included attending events sponsored by TAN which involved clients and families, such as monthly picnics, holiday parties, and informal get-togethers. I also attended a weekly support group for family members of people with HIV/AIDS. In addition, I developed and continue to facilitate a support group at TAN for heterosexual couples affected by HIV/AIDS. Focus Group An additional part of the internship experience involved co-facilitation of a focus group with mothers and guardians of young children who are impacted by the disease. This was accomplished in conjunction with the USF School of Medicine Pediatric AIDS Demonstration Project, for the purpose of formulating a needs assessment of this population. Day care was provided, and refreshments were served to the group. Eight individuals had planned to attend, but transportation difficulties resulted in a group of five women. Four of the women had the virus, and one had custody of the children of her HIV infected sister. Three of the women had children who were also infected, one of whom was also born with an addiction to crack cocaine. One woman was Caucasian and the remainder were African American. All of the women were on public assistance. A variety of questions was posed to the group; these related to family health, financial concerns, availability of support, access to


37 information and services, parenting concerns, concerns about the future, perceived needs, and suggestions for service providers. Informed consent was obtained, and the meeting was recorded on tape and videocassette. Out of this initial session has evolved an ongoing support group of mothers who meet weekly, with day care and lunch provided. This group is jointly sponsored by TAN, the Demonstration Project, and Francis House, another local AIDS support agency. Oral Histories The participant observation and focus group phase of the research afforded an overview of issues faced by families under a wide variety of circumstances, and their responses to them. As Bernard ( 1988:151) notes, it offers "intuitive understanding of what is going on in a culture". In addition, in-depth topical oral histories were gathered from members of five families impacted by HIV/AIDS from a cross section of family configurations. These individuals were selected from among those with whom the intern had become acquainted through participant observation and focus group activities. Although some might argue that objectivity does not exist in research (Altman 1987:7), it was the goal in this selection process. Selection criteria included commonality of experience with others and ability to express feelings and concerns. A cross section of other variables were reflected within this group


38 of informants as well, including ethnicity, age, gender, economic status, and the HIV risk category and stage of disease of the infected family members. The informants included an African American mother who became infected with HIV through heterosexual exposure, a Puerto Rican coupl e who became infected as a result of his hemophilia and subsequently had an infected child, an uninfected white gay male whose long -time companion had died of AIDS during the previous year, a white middle class homemaker whose husband had become infected through an affair with a gay male, and a white woman whose long time companion had become infected through intravenous drug use. Although this was not a strictly representative sample, the incorporation of a cross section of individuals demonstrates the far-reaching nature of the epidemic and identifies issu es faced by the wide variety of people affected by the disease These in -depth interviews form a collection of topical oral histories centering around the impact of HIV on the lives of the family members. Utilizing this format, informants were free to discuss the issues of greatest importance to them, rather than responding to a structured interview reflecting the priorities of the researcher (langness and Frank 1988:91 ). Part ic ipants w ere encouraged to discuss topics relating to their personal background; their relationship history with the PWA; l earning of the HIV/ AIDS diagnosis; the impact of the infection on their lives and on family life; issues around health, transmission, economics, discrimination and stigmatization; and support needs. With one exception which occurred at the TAN office, the interviews were


39 conducted in the homes of the informants. The interviews were t ape recorded and informed consent was obtained from each informant. Marks (1989) notes the value of life histories i n movi ng beyond ari d, unpeopled perspectives into the ambiguities of everyday life. It was my intent to humanize the e x perience of living with HIV/ AIDS, and to uncover som e o f the ambiguities with which the people affected by the epidemic are faced each day. The oral histories presented in this research have two purposes; in conjunction with the information gathered through participant observat ion, they further document and add richness and depth to the data regarding the impact of the epidemic on these families (Kane 1992). In add ition, they acknowledge the lived experience of individuals who often remain unnot iced even though they are tremendously affected by HIV/ AIDS a nd they have a s ignificant part to play in determining the degree to which the epidemic impacts society as a whole. After all it is the family who largely determine s how much of the physical and financial burden of care will fall on healt h and social servic e delivery systems, and family members who are in sexua l or drug us ing relationships with infected individuals can markedly impact prevention and control efforts in curbin g the epidemic. Journal notes of the participant observation activities provided description of the participant observation a ctivities. The a udio tapes from the focus group session and oral history interviews were transcribed. Content analysis of the qualitative data from these three sources was conducted in


40 order to elucidate patterns and common themes in the lives of families as they confront the epidemic. Summary and Conclusion Through an internship with the Tampa AIDS Network in Tampa, Florida during the spring of 1993, both quantitative and qualitative data relating to families affected by the HIV/AIDS epidemic were gathered A variety of sources and methods were utilized, seeking corroboration of the research findings. Demographic data from TAN clients were statistically analyzed, illustrating changes in client composition over time in regard to the variables of age, gender, ethnicity and HIV risk category. Qualitative data was obtained through participant observation, a focus group session, and in-depth oral history interviews. Content analysis of the resulting journal entries and audio tapes provided information about the lived experience of HIV/AIDS in the context of the family.


41 4. RESULTS Introduction Both the quantitative analysis and qualitative data gathered from informants indicated that the impact of HIV/ AIDS has spread far beyond the groups initially identified as being most affected by the disease. The data suggest numerous issues that arise for families facing the epidemic. Results of Quantitative Analysis Statistical analysis of TAN demographic data from 1986 through 1992 indicates an overall mean client age of 34.1, with standard deviation of 9.0. The mean age among males was 34.8, with standard deviation of 8.4. Among women, the mean age was 30.8, with standard deviation of 1 0.9. There was no significant change in client age for either sex or for the combined sexes between 1986 and 1992. The differences in each of the three variables, 'sex,' 'ethnic group,' and 'risk category,' were highly significant, indicating significant changes between 1986 and 1992 in the composition of TAN clients relating to these variables.


42 The resulting tables indicate "X2c" when Y ates' correction is applied, and "X2 when chi-square is a pplied In 1992, a greater tha n expe c t e d numbe r of women and fewer than e x pected number of men were s erve d by TAN (Table 1 ). In 1988, 95.9% of clients were male, and 4 .1% w e r e female; in 1992 79.7% were male and 20. 3 % were f e m a l e. Table 1 Tampa AIDS Ne twork Clien t Demographic s Sex by Year Y e ar 1986 1987 1988 1989 1990 1991 1992 TOTA L MALES Observed Frequ e ncy 32.0 49.0 47.0 58.0 242.0 458.0 600.0 1486.0 Percent of Total 1.8 2.8 2.6 3.3 13.6 25.7 33.7 83.5% Expected Fr e q ue ncy 30.9 45.1 4 0 9 53.4 231.3 455.8 628.6 FEMALES Obser ve d F requ e n c y 5.0 5.0 2 0 6.0 35.0 88.0 153. 0 294.0 Percent of T o t a l 0 3 0 3 0.1 0.3 2.0 4 9 8.6 16.5% Expect e d Frequency 6.1 8.9 8.1 1 0 6 45.8 90.2 124.4 TOTAL 37.0 54.0 49.0 6 4 0 277.0 546.0 753.0 1780.0 P e rcen t of Total 2.1 3.1 2 8 3.6 1 5 6 30. 7 42. 3 100.0% X'= 2 1.5, 6 df, p<.01


43 Table 2 Tampa AIDS Network Client Demographics. Ethnic Groups by Year. AFRICAN AMERICAN Observed Frequency Percent of Total Percent by Year Expected Frequency H ISPANIC Observed Frequency Percent of Total Percent by Year Expected Frequency CAUCASIAN Observed Frequency Percent of Total Percent by Year Expected Frequency TOTAL 1986 0.0 0.0 0.0 1.0 2.0 0.1 50 0.4 2.0 0.1 50 3 0 4.0 0.2% Year 1987 1988 1989 1990 1991 1992 1.0 8.0 7.0 45. 0 127.0 227. 0 0.1 0.5 0.4 2 7 7.6 13.5 14.3 22.2 11.9 16.3 23. 3 30. 2 1 .7 8 9 14.6 68.4 134.5 185.9 0.0 5.0 1.0 26.0 61.0 72.0 0.0 0.3 0.06 1.5 3.6 4 3 0.0 13.9 1.69 9.4 11 2 9.6 0 7 3.6 5 9 27.5 54.1 7 4 8 6.0 23.0 1.0 206.0 357.0 454.0 0.4 1.4 0 .06 12.3 21 2 27.0 85. 7 63.9 1 7 74.4 65.5 60.3 4.6 23.5 5.9 181.1 356. 3 492.3 7 0 36.0 59.0 277.0 545.0 753.0 0.4% 2.1% 3 .5% 16.5% 32.4% 44.8% )(2c = 38.13, 12 df, p<.05 TOTAL 415.0 24.7% 167.0 9 .9% 1099.0 65.4% 1681.0 100.0%


44 Table 3 Tamp a AIDS Network Client Demographics. R isk Category by Yea r. Year 1986 1987 1988 1989 1990 1991 1992 TOTAL HETERO SEXUAL Observed Frequency 2.0 2.0 0 0 6 0 35.0 136.0 251.0 432.0 Percent of Total 0.1 0.1 0.0 0.4 2.1 8.1 15.0 25.7% P ercent b y Yea r 66. 7 28.6 0.0 10.5 12.6 25 33.5 Expected Frequency 0.8 1.8 10.0 14.7 71.3 140.0 193.0 GA Y Observed Frequency 1.0 4 0 29.0 41.0 192.0 303.0 367.0 937.0 Percent of Total 0.1 0.2 1.7 2.4 11.4 18.1 21.9 55.8% P ercent by Year 33. 3 57. 1 74.4 71.9 69. 3 55.6 48.9 E xpected Frequency 1.7 3.9 21.8 31.8 1 54.7 304. 3 419 IVDU Observed Frequency 0.0 1.0 5.0 8 0 26.0 57.0 75.0 172. 0 Percent of Total 0 0 0.1 0.3 0.5 1.6 3.4 4.5 10.3% Percent by Year 0.0 14.3 12.8 14.0 9.4 10. 5 10 E x pected Frequenc y 0.3 0.7 4.0 5.8 28.4 55. 9 76.9 BISEXUAL Observed Fre qu e ncy 0.0 0.0 4 0 1.0 15.0 39.0 34.0 93.0 Percent o f Total 0.0 0.0 0.2 0 1 0.9 2.3 2.0 5 5 % Percent by Year 0.0 0.0 10.3 1.8 5.4 7.2 4.5 Expected Frequency 0.2 0.4 2.2 3.2 15.4 30.2 41.6 BLOOD Observed Frequency 0.0 0 0 1.0 1.0 9.9 10.0 23.0 44.0 Percent o f Total 0.0 0.0 0.1 0.1 0.5 0.6 1.4 2.6% P e rcent by Year 0 0 2 6 1.8 3.3 1 .8 3.1 Expected Frequency 0.1 0.2 1.0 1 5 7 .3 14.3 1 9.7 T OTA L 3.0 7 0 39.0 57.0 277.0 5 45.0 750.0 1678.0 0.2% 0.4% 2.3% 3.4% 16.5% 32.5% 44.7% 100% X'c = 73.05, 24 df, p< .05


45 Ethnic composition has changed significantly over time among TAN clients (Table 2). In 1992, a greater than expected number of African Americans were served for the first time, and fewer than expected Caucasians and Hispanics. The percentage of African Americans served by the agency has increased steadily and significantly since 1989, from 11.9% to 30.15%. The percentage of Hispanic clients, on the other hand has decreased since 1991. The percentage of clients who are Caucasian has decreased significantly since 1989, from 86.4% to 60.3%. Patterns in HIV transmission risk among TAN clients have also changed significantly over time (Table 3). Only the heterosexual, gay, intravenous drug use, bisexual, and blood transmission categories (combining transfusion and hemophilia) were analyzed due to the low numbers representing other ris k categories among the TAN population. Recent increases in percentage of clients reporting heterosexua l transmission are particularly notable, from 12.6% of clients in 1990 to 33.5% in 1992. A downward trend in numbers of gay men seeking services at TAN began in 1991. The perc en tages of clients in this risk group have decreased steadily from 74.4% in 1988. Gays accounted for fewer than 49% of clients enrolled in 1992, while 33.5% of the clients were in the heterosexual risk category. There was also a decrease in the bisexual ris k category in 1992, following increases in the previous two years. Sixty-one percent of total AIDS clients reported gay or bisexu a l activity as their risk for HIV/AIDS.


46 There was also a decrease in clients reporting intravenous drug use as their transmission risk in 1992, with the observed frequency falling below the expected. The percentage of clients in this category has fallen each year since 1989. A sizeable increase occurred in 1992 in the blood product category of risk among TAN clients, with greater than 50% of the total clients in the category registering in that year. Qualitative Data Analysis A number of themes emerged in the qualitative data. The specifics may vary depending on stage of infection, financial status, amount of support available and other factors, but many commonalities are found in the experiences of families dealing with the epidemic. The participant observation and focus group phases of the research provide an overview of these issues, while the oral histories allow a closer look at family situations within the context of HIV/AIDS. Results of Participant Observation The participant observation phase of the research indicated a number of commonalities in issues faced by families.


47 Coexistence of Reality/Denial. Experience with a variety of families suggests that facing reality and denying the significance of the d i sease coexist in many instances. Consider Eva, whose partner has recently been diagnosed with AIDS following several years of asymptomatic infection. One minute she is tearful, saying "It took such a long time to find such a good man. It's not fair to have to lose him, and to see him suffer." A short time later, she complains that he has "done nothing but sit around since he got out of the hospital. Since he's home all the time now, I just think he ought to be doing more." Several family members admit to realizing the severity of their situation, but organizing their lives in such a way that they avoid facing it. One woman acknowledges, "I over-fill my life. Then there is no t i me to dwell on the problems." Most of the families contacted in the course of thi s research have managed to cling to the hope that their situations will improve, even in the face of overwhelming odds. Living with Ambiguity. The roller coaster nature of the disease leaves families struggling to cope with the ambiguities that arise. "Nothing is clear cut. "You can't count on anything from one day to the next." Such refrains are common among family members. One woman remarks that even when h er son is having good days, she fears coming home from work and finding him dead. Alice, who is the sole caregiver for her brother, describes her frustration: "I get all


48 happy when he has good days; then he goes downhill again. I don't know i f I can take it. I don't know whether he's dying or if I should be encouraging him to get well." Another woman recounts this e x perience with her son: "Chuck had been doing really well for a while. He had always wanted to go to Disney World, but we could never afford it. I decided the time had come. By the time we got there, he was running a fever and shaking so he could hardly walk. We had to bring him home, and he was in the hospital by the next morning." Lives are often put on hold For example Ann, the mother of two teenaged boys with hemophilia, describes her plans to attend graduate school after her boys graduated from high school: "It would mean commutin g back and forth on long weekends and holidays while they stayed here with their dad. But their T-cells have been dropping this past year, and I can't leave them now. Who knows what might happen, and I want to be with them as long as I can." This family lost an eight year old boy to hemophilia -associated AIDS five years ago; they have no other children. Another couple had lon g been planning their first beach vacation, which was badly needed following a stressful year during which the man was diagnosed with AIDS and had to give up his job. He was quite ill during the fall, but had been doing well for some time. On the day of their scheduled departure, he was hospitalized and unresponsive. His girlfriend, desperately in need of the break now admits "It no longer makes sense to try to plan this, and I can't go without him. Maybe I can get a couple of days off


49 on the spur of the moment when he's better, but not enough time for a real vacation." Keeping Secrets Fear of the stigma and resulting discrimination that surrounds HIV/AIDS is a common theme among family members. Keeping secrets consumes a great deal of energy in many families. "[my wife and I] found out we were HIV positive a little over a year ago one month after we got married," Sean said on their first visit to the couples group. "Other than our doctor, you are the first people we've told. It' s been really hard not to be ab le to talk to anyone about what's going on with us, but we just can't. It is very common for families or individuals not to share the news of the infection until illness occurs. Most have found that their fears of disclo sure were unfounded once they did tell others about the diagnosis, but that fear is often so overwhelming that it is difficult even to share the diagnosis with other famil y members. One woman recalls "Things got so bad that my mother-in-law started bugging me, blaming me for our unhappiness, so I blurted out what was going on." Many people report selectively telling family members and friends whom they know will be supportive. Others note that they have been pleasantly surprised by supportive responses from unexpected sources. Many men report their apprehension when telling their sexual partners the news of their HIV status, and relief at finding that their fears were not realized.


50 Debbie is 35 year old HIV positive woman who had been widowed the previous year. She describes the subterfuge she maintains with her six year old son, resulting from fears of a different nature: "I told my coworkers and our neighbors that my husband had cancer. Now I'm getting sick and I'm off work, but I don't want my son to know. I get up, get dressed, take him to school and tell him I'm going to work. Then I come back home and rest until time to pick him up again. I don't want him to get scared." Some families bear multiple burdens due to the epidemic. Two women with HIV relate their reluctance to tell parents and siblings about their infection for this reason. Ann: My brother died just a few years ago from AIDS. It was really hard on my parents, and they haven't recovered yet. I can't bring myself to drop my news on them on top of everything they've already been through. I know the time will come when I have to tell, but for now I just keep it to myself. Luisa: Nobody in my family knows I have HIV. My husband died of it, and my brother. Just a few months ago, my sister in law died from it, too. I'm now a single parent for their four year old son. Nobody asks me if I have it, too, and I don't tell. I can't add to what they've already had. One of these days I'll have to tell, but for now, enough is enough! The secretiveness surrounding this disease results in feelings of isolation among affected persons, often at times when they are most in need of support. It is common, particularly in the heterosexual community, for individuals who are entering a relationship with a person who carries the virus to be reluctant to share that information with others. Although this is typically a very stressful time, they often will isolate themselves, fearing rejection and assuming that


51 .. people will think I'm crazy for contemplating such a thing!" as one woman explained. Isolation. When a family member becomes ill, care giving often becomes an isolating experience. Many families, regardless of the health status of their loved one, express the sense that nobody is going through the problems they are facing. One Hispanic woman, the wife of an HIV positive man who ultimately also seroconverted, acknowledges: "We can't tell our family. It's the machismo thing-they would have hysterics! This [couples group] is the only place we can be ourselves." Health Issues. Concerns regarding the health of the infected family member are central to the experience of living with HIV/ AIDS. Many infected individuals claim that their loved ones become more concerned than they do over actual or perceived problems. Common areas of concern among family members in relation to the person with the infection are diet, adherence to treatment regimens, substance abuse, and overwork. Within the context of both the couples support group and the hemophilia clinic population, the infected individuals often seemed to cope better than their partners, exhibiting less stress over problems, less concern with minor symptoms and little rega r d for rigid adherence to treatment regimens, and greater focus on their quality of life rather than on maximizing their longevity. This frequently produced tension


52 between partners, with the affected individuals having to "fight the tendency to nag as one woman observed. These partners often relate a sense of powerlessness over the infection and an inability to control the behavior of their loved one. The mother of two young men with hemophilia describes her concern as their T -cells decreased over the previous year: Now the youngest one has decided to stop takin g his [antiviral medications]. He didn' t like the side effects, and said he would rather live for a shorter time and feel better. I can understand that, but I don't know if it's a good decision I guess nobody really knows. It' s a struggle for me to let him make his own decis io ns regarding his health. Many families report stress while awaiting r esul t s of immune status tests performed on their loved ones. Several peopl e note the stress is so severe that they have difficulty functioning during the time lead ing up to the medical appointment. Even when the infected person is asymptomatic, family members commonly approach that time with a sense of dread often reporting that fear increases as more time goes by without health problems. "We know our luck is going to run out. Everybody else is getting sick and dying. "It' s like waiting for the other shoe to fall T imes of particular c ris i s for families occur when their infected family member experiences a decrease in T-cells; develops symptoms, whether or not they are HIV related; i s advised by the physician t o begin antiviral medication; or becomes ill Many family members note uncertainty in determining whether physical changes occurring in the infected individual are real or imagined, or whether they are HIV-related or due to some other factor. Behavior changes are


53 particularly frightening to most families, with concomitant fear of dementia and uncertainty as to how they would cope with such a development. One woman reported noticeable changes in the behavior of her husband, which were of great concern because he had no medical coverage for a neurological evaluation at that time. "I'm trying to deal with all this and stay in school so I'll have some means of support eventually. I was a drug addict, on the streets. Now, at 40, I'm trying to turn my life around and deal with all this at the same time. Sometimes it's just too much. Now if he goes crazy on me, I just can't take it." Concept of Self and Family There are frequently alterations in concepts of self and of family among individuals living with HIV/ AIDS as the illness develops and socia l and family roles change. "I guess I'd always had sort of a storybook life until Jerry dropped this bombshell," said Barbara of her discovery that her husband had contracted HIV following two affairs with gay men. "We were supposed to be the perfect family, with Jerry providing v ery well for us. Now I have to go back to work. We might not be able to send the boys to college. Jerry might not even live until they graduate from highschool. It wasn't supposed to be like this. One of the most common themes around this issue among young couples affected by the disease concerns parenthood. Many have a strong desire for children, and had always assumed that they would be parents. Most


54 are reconciling themselves to a childless state due to the uncertainty of the future and because pregnancy options are either potentially hazardous to the mother and infant, or prohibitively expensive. A changing concept of the self as a sexual being is also frequently encountered. Fatigue illness, lack of time, and fear of transmission are often mentioned as causative factors. Fear of Transmission. HIV transmission risk is a concern for many couples. Individuals with the infection frequently express fears of transmitting it to their partners. One HIV positive gay man, after being in a relationship with a negative man for several years, recently became involved with another positive man. "Even though we still don't exchange body fluids because of [the possibility of] reinfection, it's still so much nicer not to always worry about accidentally exposing someone to the virus." Most couples report that they experienced decreased sexual desire for a period of time following diagnosis, and that they sometimes miss the free sexual expression that they once enjoyed, but that safer sex practices have become "second nature." On e hemophiliac reported that he and his wife initially vowed to abstain, but "it was the pits!" They have since resum e d sexual activity. It is common for the uninfected partners to fear HIV testing, even though the couples consistently practice safer sex techniques. As one wife of a man with hemophilia/HIV states, "I don't really think we do anything that would put me at risk, but ending up like [the wives who have seroconverted]


55 is still my worst nightmare. I get a test every six months, and I m scared to death every time. Another wife says "I'm comfortable that we aren't taking any chances, but taking the test still scares me so that I onl y do it every two or three years If I thought we'd messed up, I'd probably go in. The first time, I didn't even realize I was scared until they told me I was negative, and my legs started shaking so I could hardly walk out of there. Feelings of Guilt Guilt i s often mentioned in conjunction with HIV/ AIDS, and may take a number of forms. Infected individuals express guilt upon learning they have transmitted the virus to their mates. Family members frequently express guilt feelings and worry over leaving the sick ind iv idua l a lone or in the care of strangers when they go to work, and not having energy to devote to them at the end of the work day. One woman in the famil y group recalled that there once was a day program for PWA's, but it was not utiliz ed due to lack of transportation for potential participants. In a d i scussion during one family group session members debating advantages and d isadvantages of a lingering death versus a quick death cited guilt feelings over unreso lved issues with the deceased as a disadvantage of dying suddenly. One woman describes the initial HIV testing experience as guiltproducing: I knew Les was bise x ual and was at risk [for HIV], so we both decided to get tested. I was en route to a conference when he went for his test result, so I called him from the airport between fl ights and got t he news that he was positive. I was devastated and terri f i ed so I immediately


56 called the clinic long distance and talked them into giving me my result. My only reaction when they told me I was negative was "Yes!!!" I still feel guilty about it-that my devastation at his test result was so quickly overshadowed by my own relief. Concerns for Future. Concerns about what the future may hold are often expressed by families. The following quotes illustrate some of these concerns: "I don't know if I can keep doing this. I'm just tired of facing it every single day. "My mom and I want to be able to remember the good times with my brother, but so many bad times have come that we can't. "We can't get Joe to take care of his will or transfer the home ownership or anything that he needs to do in preparation, and if we nag him he thi nks we' re just being greedy. "This really pisses me off! I was there for Chuc k and helped h i m die. We were together for thirteen years-a long time for a gay r ela tionship. Most of our friends now are dead or dying, and I'm not feeling so hot, either. Who's going to be there to help me?" "Leo won't do a living w i ll or power of attorney. He hasn't even taken his ex-wife off his life insurance yet, and we've been together for three years. His response is I ll do it when I need to. I'm doing fine and don't have to worry about it now."' Neglect of Personal Needs When family members becomes ill, t hose involved in their care often begin to feel as if their lives are being consumed by t he disease, as well. One mother, describing the constant burden she feels in caring for her son, cries "I ve lost me!" A gay man rel ates his an xiety when his


57 coworkers invited him out for drinks after work to celebrate his new job: "I wear a beeper so I can be reached at all times if anything comes up, but I still became so anxious because my lover's daytime care attendant leaves at 4:30, and he had been alone for over an hour. I had to leave." Another man, when the health of his lover declined, began scheduling a ll his evening functions at his home because he had no one to stay with his sick lover. The sense of not being able to escape the disease i s also repor ted among family members whose loved ones remain asymptomatic. In the case of one gay HIV positive couple, one partner became very upset after the other assumed an activist role in the HIV community. He complaine d "It' s not enough that we should both have this disease. Now all Jerry has time for i s PWA Coalition business He keeps saying he 'll slow down so we can do other things, but it never happens. Most of our fri ends now have it, and it' s li ke our lives revolve around it." The adult son of another couple who are affected by HIV asked his mother, "Don't you have any friends anymore who don't have AIDS?" Another woman whose husband has asymptomatic HIV infection notes that since they have both started working in the HIV fie l d, they have to guard carefully against letting HIV/ AIDS completely take over their lives. Financial Stress. Financial stress is nearly a universal concern among families coping with HIV/AIDS, particularly as individuals become ill and unable to work. People who have previously been independent often find themselves


58 confounded when confronting social services systems. The following excerpts illustrate some of these stressors: A : I am a widow living on social security; have been for many years. Recently, my thirty-one year old son turned up with the news that he's gay and has HIV. He is only able to work part time, but he was turned down for disability. He had a doctor that was s eeing him and givi ng h i m medicine without charging, but now he's going out of business. He's living with me now, and I m trying to help him, but a ll I have is my social security. I don't know what to do, or where to turn. I don' t understand all these programs-he can't make it, but they say he s not eligible. B : I'm a single mother trying to help my sick son. I have another son who is institutionalize d beca use he s mentally handicapped. It's all really a financi al drain. Bills have piled up, and I'm having trouble getting creditors to make allowances. Even with thir d party payers, the illness is an extra expense. There's a lot of things they won't cover--Gatorade, copayments, food treats, household things an d clothes. I quit my job and cashed in my retirement last year, at age fifty-three, so we could go on a trip to California that my son had always wanted. When they' r e so sick, it's hard not to overextend in order to do specia l things for them. C: When I tested positive, the Army retired me on a pension an d social security. I have two kids from my previous marriage I hate staying at home but if I work, my kids won't get social securi t y and I ll have to pay child support. I can't afford to support two families but it's important to stay with your life, not give up and sit around waiting to die. A topic for discussion during several couples support group meetings related to the advantages and disadvantages of marriage versus cohabitation with partners from a financial perspective. The group agreed that assistance was easier to obtain if the ill person was single, yet they expressed concerns about the possib le loss of spousal rights if t hey were not l egally married O n the other hand, married partners were concerned about the financial


59 responsibilities of surviving spouses for medical expenses incurred during a protracted illness. Some did not want to marry as a result of this concern; others talked of planning to "divorce on paper" when the health of the spouse begins to fail. Family Relationships. An HIV/ AIDS diagnosis brings up myriad issues that must be faced with immediate and extended family. The problem of talking to children about the illness of a family member is often mentioned by parents. Opinions regarding the content and timing of shared information vary widely, usually dependent on the age of the children and the degree to which parents had resolved their own feelings. One f amily honored the wish of the father that his daughter not be told the full nature of his illness until after his death. Others relate: The kids know daddy is sick and has to take pills, but that's it. The ten year old tells AIDS jokes sometimes-how can we tell him his dad has it? Our children are older. We found it too stressful not to tell. We let our kids in on everything right from the beginning. They came with us to the Hemophilia Center when we got the t est r esult. When their dad starts getting sick, we' ll tell the m what' s going on. There' s no point worrying them until then. We've thought about telling them, but we're afraid that they might not be able to keep the secret. If it got out, there might be problems for them and for us


60 Most of the families in this study have found that the children responded relatively well when they were told of the diagnosis. Some of the children even adopted an activist approach, wanting to educate peers about the disease. Others appeared to accept the news and be supportive of the family member, but resistant to informing others outside the family. Some parents, particularly when younger children were involved, reported periodic signs of insecurity from their children, such as clinging, separation anxiety, or waking at n ight. An occasional older child would respond initially with anger and resentment, usually coming to terms with the parent in time. It is common to see older children of single mothers with HIV assuming increased responsibility in the family. Tensions often arise with extended family members when families are faced with an HIV/AIDS diagnosis. One single mother caring for an adult son with AIDS spoke frequently of her inability to obtain support or assistance from her ex-husband, although he continually intruded into their lives. She felt obligated to allow him access to the son because, although the relationship had historically been problematic, her son now wanted to spend time with his father. This was a constant source of frustration and resentment for the mother. Caregivers frequently described their anger toward other family members for perceived lack of support for themselves or the ill family member. Power plays between family members may occur, causing tension and disruption of the caregiving process. Risk is particularly high when there is not


61 a legal relationship between the partner and the person who is ill. This situation is described by a woman whose partner was anticipating discharge from the hospital: His sister just barged in there and said she was taking over. He was too sick to react, and I was so exhausted; it just got out of hand. She started saying he couldn't live in the apartment any more, and she would move him in with her. I know there would be an advantage because she doesn't work, but to think she would come in there and disregard the life we've built together the last few years! He finally was able to say he wanted to stay with me, and she's not one bit happy about it. Even thought she said she would cooperate, I can see this thing isn't over yet! The mother of a man who had died of AIDS during the prior year relates her experience with his wife: "My daughter-in-law has developed a split personality or something. She didn't even let me know my son had died I found out through a friend after the funeral. I needed to do something to mark his passing, so I threw an open house in his honor." Although rejection and abandonment of persons with HIV/AIDS by family is often mentioned in the literature and the media, such situations were rarely encountered in the course of this research When there was such an occurrence, however, it was devastating to the people involved. A : I had a pretty good life up until I found out about this [HIV]. Since then, everything has spiraled downward. In the past year and a half, I've lost everything. My parents both died. My wifeI guess she just couldn't handle this. She started doing drugs again, then she left me and took my daughters with her. She's got a restraining order so I can't even see them. Now I'm getting sick and can't work any more. Can't drive, and have to depend on strangers to help me My daughter will soon be old enough to do what she wants, come see me if she wants whether my wife likes it or not. I hope I can hang on that long. I'd sure like to get them all back, though.


62 8: My sister and I were always very close. She's married now, and has a baby. We were together at Christmas, and she took a picture of me holding the babyshe had her fingers in my mouth. My sister showed that picture to her pediatrician and told him about me. He had a fit! He wants to test the baby for HIV, and told her it would be best to stay away from me completely. Her husband really freaked, and now he won't even let her talk to me on the phone. She calls my mom, and she asks about me but we don't even talk. It's like they think I knowingly put that baby at risk. We sent her a bunch of information for the doctor, but it didn't make any difference. Tensions often build between family members and the person with HIV/AIDS. The individuals involved are generally living in a varying state of anxiety due to the diagnosis itself. In addition, the person with the infection is often perceived as taking risks with h is or her health, and the family response is frequently perceived as excessive or controlling. As the illness progresses, it is common for the caregiver to become frustrated with carrying the increasing responsibility, and with trying to encourage the afflicted person to assume more of the load during times of relative good health. Communication. Problems in communication often surface between family members in the process of dealing with the illness. The desire of one party to talk about the situation and the other to avoid it is a common source of difficulty. With one couple, each person maintains that it is the other p artner who is unwilling to accept the situation a nd refuses to talk about what they are going through. One woman, complaining of the denial h e r brother strives to maintain, states: "Not talking about it is so hard!" Another young man with


63 hemophilia/HIV complains that his wife no longer shares her feelings with h i m. He became quite ill shortly after they were married two years ago, and "she seemed to close down after that. I don' t know if she's afraid of hurting my feelings, or what's going on with her." Many family members grow frustrated and concerned because affected individuals often tend to hide their symptoms. One woman was frightened to realize that her husband's illness was progressing: I had no idea until we went on vacation that he was having frequent diarrhea. He refuses to acknowledge it!" Another was angered and upset when her partner was several hours late for dinner, and she later discovered that he had left work and gone to the emergency room with diarrhea and vomiting so severe that he lost consciousness. Upon receiving a report from h e r son s physician that his death is likely to occur within a matter of months, one mother faces some difficult communication questions: "I don't know what to do with this information. I don't know whether to tell my son, or whether to tell the rest of the family or our friends. C a n the doctor really know that for sure? If I tell my son, will it cause him to give up? How will people react, or respond to him if they think that?" This issue stimulated a great deal of discussion in the family group. The members agreed that it was important for the dying person to have an opportunity to talk about this process, even though it is difficult for those around him or her to hear it. The consensus w as tha t i t was important for


64 everyone to be aware of the prognosis so they can have the opportunity to take full advantage of time spent with the person, and can support each other: ... to say and do things that need to be taken care of; to go to Disney World, have Christmas in September, or throw a clown birthday party." Several informants expressed communication problems of a different nature; they felt ignored by service providers and others whose main concerns seem to focus on the person with the virus. One woman described the vague sense of dissatisfaction she felt with several physicians she and her partner consulted prior to deciding on Dr D "He talked to [my partner] for a few minutes, then turned to me and asked how I was doing, how I felt about what was happening, if I had any problems or questions, whether I had been tested. It made such a difference! I knew then that he was the doctor we would stay with." Positive Outcomes. A number of informants suggest that living with HIV h as not been an entirely negative experience, reporting improved communication with partners and/or others, strengthened relationships, resolution of long standing family conflicts, and reordered priorities as positive outcomes of this experience. Many describe a fuller appreciation of the present moment than they had previously. One gay couple purchased the Mercedes convertible they had always wanted, and took a trip to Europe. The wife of a bisexual man with HIV commented: "At least Ivan stays at home now." The mother of a man


65 who had recently died of AIDS found: "Things are put in perspective. I'm no longer bothered by things that would have driven me nuts previously. You know, very little is really all that important! Death seems more a part of life now, and not that horrible." Some family members note that they had never fully realized their own strength and capabilities until they were faced with this crisis. Many remark on the value they place in knowing many people that they would never have encountered if HIV/ AIDS had not entered their lives. Results of Focus Group Although the attention of the focus group was directed toward assessing needs and access to services, the participants raised a number of issues affecting their families. Neglect of Personal Needs. A major topic of discussion was the tendency to place the wellbeing of the children in their care over their own health: C: I don't think about my health ; I think about my kid's health more than my own ... Anybody who knows me knows that's it for me, is my kids. Because their dad died, I feel like I'm the only one left for 'em. I always try and make sure everything's okay with them. S: As long as I can get up offa the bed and walk, I'm gonna make sure the kids' health is okay, then mine ... the kids need me ; no matter how sick I be, I have to carry on ... trying to do what I think I be feeling up to.


66 Several of the group note that their health needs are not the only needs to be put aside. They admit to needing time out for themselves every day, and seldom getting it: C: I'm a sad case (laughing). My three year old is with me five days a week. My mother takes her Friday night until Sunday. The baby is with me twenty-four [hours a day] seven [days a week]. I never take time out and do something for me ... I feel like I'm an 85 year old woman, and I'm only 22. S: Even if I had someone to watch the kids for an hour, I'm gonna be worried if they're taking care of 'em .. l just deal with it. Even if they get on my nerves, I call 'em all in one room, and I hold their hands and pray with 'em. Family Response. Some of the women in the group discussed responses of family members to their HIV/AIDS diagnosis: D: If I'm already hurtin', don't come tell me 'Well, lay down, baby.' That's not helping me. I need that little push. That' s what I like about my momma. She says 'Get your lazy soand so up and try to do something, maybe you'll feel better.' I don't want to hear it but in the long run, it helps. C: When I can't eat, my children won't eat. D: My daughter wants to know that I took my medicine. She wants to know if I have AI OS. Y: When I was upset, my son, even when he was three, would come near me. I would think he was coming to beg for a drink or whatever, and I didn't want to bother ... and that's not what he was doing. He'd come over and sit down, and he d go [pats her arm], and I'd just look at him and, Oh God, cry to know that he would even think to do that, to know something was wrong.


67 One woman describes the pain she experiences over the i llness of her daughter. Her children are in foster care, and she has visitation with them when her daughter goes to the hospital for regular treatments. "I went to the hospital to see my daughter, and I said 'Where's your brother? Didn't he feel like coming today?' And she said 'Nor me! Oh boy, I hate that! She really ain't with thi s, but she knows it' s gotta be done. Living with Ambiguity. The cyc lical nature of the d i sease creates ambiguity i n the lives of many living with HIV infection, which may cause difficulties in family relations. One mother described how this affected her : 0: The last couple of weeks I've been feeling excellent .. almost as if I could carry a job every day again . But sometimes I have those daysnot that I'm hurtin', but I m tired. I feel l i ke I could just lay down and sleep But my momma' s stubborn. She says that' s just la z iness so my house be clean! I takes 30 minutes and puts every second to cleaning and doing everything so I can lay, because this is what feel good. I feel good to just get in my bed just be there. Family Relationships. Group members ranked problems w ith family members as one of the most difficult issues with which they must contend. Some of the women describe their dilemmas: S : My daughter is si xteen, and she helps a lot, but I just found out that she's pregnant, so that's another baby entering the home. Someti me she won't be feeling too good, but her and my niece that' s fifteen that's in my custody, they help me a lot with the kids. And my baby niece, I worry about her the most .. at nighttime from the drugs that my sister used, she wakes up screaming. I mean like her ears and her head is just hurting, and you can hardly rock her close to you. You have to rock her away from you, but closeness shows them the love. Some nights we stay up unti l five o'clock in the morning rocking. And then when we do


68 get to sleep, most of the time my kids miss the bus because I was so tired from getting the little ones down. The baby hollers when her mom comes to see her. Her mommy came over the other day and when she went to see the baby, she went "Oh, please come and get her. I don't know what to do. She's hollering and she won't take the bottle. I can't take it-please get her!" I said 'Gal, calm down! That's your baby. You got to be in control. What you going to do with this?" So she put her on the sofa quick, panicked .... picked her up and I said all she needed was a little love, and I held her and rubbed her back. She was fine. but the mother didn't want to go through it. Sometimes your family can be your worst enemy. Like my brother, he takes me around, and I have to pay him every time. Take my kids to the doctor, or this or that place, take my kids to schooi ... Why does he want to charge everywhere he take me? Even if it's my last two dollars, he'll take it. But my other brother, sometime he won't charge me nothing ... My sister's saying 'I'm going to die anyway,' so she's still using drugs. My other sisterI have custody of her child that's 15-don't have the virus, but she's on drugs also Because I'm the big sister, when each of 'em comes over, they know I'm goin' to cook because I've got the kids, and they eat and leave. [One sister], she hadn't never stole anything from me, but the other one, she has four or five times. You have to be in the house, you don't want her to take other things. But you don't want to turn 'em away. I have more support from friends and church people than from my family. My brothers come there and see the babies crying and everything, and say they're gonna help as much as possible. If you're going to help somebody as much as possible why charge them to go to the store? C: I have a lot of problems getting along with my family. My mother rejects my baby She loves my two year old, but she don't want to have much to do with the baby, and it' s the two year old that h as the AIDS! She's still mad at me for having this baby ... my mom says, "you don't do nothin'!" But I get tired so easy, and with those two kids and that house ... it's al l I can do! Financial Stress. The group agreed that financial concerns were the most overwhelming issue with which they are faced, and they often find it difficult to accept needed help. S recalls : "My minister found out I was having


69 trouble. He told me anytime you need something, don't let your pride get in the way. He said 'I know you're used to being independent,' because I used to work a lot, 'but any time we can help you, we will.' And he brought me some washing powder. I said 'Thank you, Jesus!' He offered me money, but I didn't want to take it." A related area of difficulty for these women is inadequate transportation. Most are able to arrange transportation for HIV-related medical appointments for themselves and their children through Medicaid transportation funding, but there are no services available to transport uninfected children or for shopping and errands, v isiting with friends and family, or pleasure outings that would decrease their isolation and add to their quality of life. Several frustrations were expressed: "If I knew somebody could pick us up and bring us here .. and take us back when the meeting's over, I would probably miss no meetings, but I ain't gonna sit out there no hour waiting on no bus. That kills the whole thing." "Do you have somebody that can come take you that don' t tell you 'Well, I can't put your baby in here'?" Medicaid funding covers transportation on for the sick child and an adult. It will not provide transportation of other well children in the family. Some women noted that they have friends who might be able to give them rides occasionally, but they have no car seats for their children. The idea of forming a child care cooperative was suggested, but as one participant noted: "If you don't have a car and I don't have a car, how I'm gonna (sic) get my kids to your house when I go to the doctor?"


70 Isolation. The isolating nature of living with HIV/AIDS was frequently mentioned during the course of the focus group. One woman noted the value of support groups in combatting this problem: "I know this [group] is healthy for me because I go home and it's nothin' I discuss with my neighbor, but I got somethin' to feed on. I'm not by myself.. .when that bad moment comes and you have no picture, nothin' to look at, it hurts!" Altered Concept of Self and Family. Several women discussed ways in which the disease has altered their concept of family, or the self-concept of individual family members. S. already had her hands full as a single mother when she found herself with an expanded family as a result of the epidemic. She was already suffering from health problems, as were two of her children, when she received the news of her sister's AIDS diagnosis: "I told myself God brought me through this [health crisis] for a reason, so when they came to me with my sister's kids ... I said I'm not going to turn them away because they need my help No matter how hard it gets, I'll always make a way." C. notes that her three year old with HIV assumes that every child lives as she does: "This is something she's been raised with, so she thinks it's normal-going to the doctor and hospital all the time. She doesn't know the difference." D. mourns the loss of childhood her daughter has experienced as a result of D.'s drug addiction and HIV illness : "I was trying to figure out just the right thing to tell her [about HIV], an eight year old .... With the two little ones, she was they


71 mama when I was on my dope, and I love her for this, but I want her to get a chance to be a child The sense that life revolves around HIV/AIDS was frequently verbalized during the focus group session C. expresses a common theme: "Between taking my youngest to her regular doctor, and the older one to her HIV doctor1 see him more than I see anybody! ... I go nowhere but to the doctor, to the hospital, to TAN, or to anywhere related to our sickness or our health Concerns for Children. Talking to their children about HIV/ AIDS and finding emotional support for them was a major issue for the women in the focus group. Several of the women relate their concerns: "I want my daughter to have somebody besides me to talk to. There might be some things she wants to say that she can't say now because I'm her momma." "I d like for all my kids to get in counseling because they've got a lot to deal with. One son, he say 'Well, maybe I need to just go on and kill myself because nobody don' t love me y'all just think of the other kids."' "I'd like to be ab l e to talk to my kids about this, somebody to help me teach them ... Some kind of something where there's three or four more kids that their mother got it, wher e the childre n can learn to deal with it so they can feel like they're a part o f this. One woman expressed concern regarding the reaction of other children if t hey discover that HIV/AIDS has impacted her family: "Most kids, when they hear about


72 somebody with AIDS, they think it's a joke ... They might say 'Your momma got AIDS!' .. They say it like that-be cruel. K i ds can be really cruel." Information Gaps. The women in the group did not feel that they have sufficient information to adequately care for themselves and their children. The previously mentioned transportation and child care difficulties were perceived as part of the problem: "it all piles back to the same thing--being able to get to that stuff. If you're stuck home with your children and no transportation, you can't get to these meetings, or get the chance to learn. You can't get it on TV!" Others in the group cite difficulties in understanding what is said to them by health and social services professionals, and what is presented in educational materials Concerns for Future. Concerns for the future were frequently expressed by the group. One woman ponders the future of her children: "Which one of my sisters are going to get this baby, or which is going to get that baby?" The group expressed more hope for the future now than they once had since they have met people who are living well with HIV infection for extended periods of time. As D. notes: "At first, I didn't know what to do. But now I've met people that' s lived seven, ten, fifteen years and that' s given me something to hope for." C relates pressure from her mother as she struggles to face some of these issues:


73 My mom says 'Well, if you're not here, who would do it [care for the children]? But you can't think like that. As an HIV person, I cannot think like that. My point of view is that I'm not going to see myself in the ground. I think on a {sic) everyday basis . l cannot sit here every day and say I'm going to die tomorrow, or I'm going to die next year. Results of Oral History Interviews The themes found throughout the participant observation and focus group experience were reflected by members from f ive families interviewed in the oral history component of this research. Three of the families are highlighted below: Mark and Denny. Mark lost Denny, his lover of fifteen years, to AIDS in January, 1993. They had moved to Tampa in 1992 to be near Denny's family as his condition deteriorated. Denny owned and operated a busi ness in the tourist industry. As his health began to fail Mark gave up his own job to work with Denny, preserving income from the business for as long as possible. They were forced to close the business prior to their move to Tampa. At that time, Denny's condition necessitated a full-time caregiver. Mark opted to take on that responsibility rather than finding work outside the home. Theirs had been an economically symbiotic relationship, with Denny's earning power being


74 significantly greater and Mark taking on most of the responsibilities of running the home. Their finances had blended over the years, and most of their assets were managed by Denny and held in his name. "That's part of what I m having trouble with now. I don't know shit about taxes ... I don't know how to keep books .. Now I'm learning to do all the adult things that he took care of." Following. Denny's death, Mark f i nds himself, at age thirty-five, with few financial resources and very little will to begin again. Mark was nineteen years old when he and Denny began their relationship ; Denny was thirty-five. Mark characterizes money as being the most difficult problem the couple faced during Denny's illness. The closing of the business and their subsequent move to Tampa had a significant impact on the financial status of the couple. In addition, they were faced with having to divest themselves of most of their assets in order for Denny to qualify for assistance with his overwhelming medical expenses. Mark angrily asserts : The government just tucks you around. I mean, all we wanted was some help. They made him give up everything ... Where is it written that you have to be a pauper in order to get help from your government? And I couldn' t believe all the red tape, all the requirements and pre requisites and requisites, all these stupid little things ... We started putting everything in everybody else s name .. He finally got to the point where he needed the government's help to pay some of the bills, and they forced himliterally made him cancel his insurance policies to meet requirements to get aid And, of course, the one where I was beneficiary was the first to go. Denny kept his HIV diagnosis from Mark for over a year before Mark confronted him with his suspicions:


75 I knew something was wrong with Denny's health, but he wouldn't tell me what it was ... He just went off by himself to get the test done. I knew something was different when he started separating himself from me. Always coming up with an excuse to not touch me or hug me, pulling himself away .... There was just a lot of fear, and I could sense it. I started questioning him and he got a little indignant, thought I was stepping in his face. I said "Look, you may have your own body. Fine! You' re entitled to it ... but if it involves your health, it involves my mental health, at least, if not my physical health. And if you' re gonna get something that's gonna be transmitted to me, I wanna know about it!" I was upset for a while that he was not being honest with me, and it was not because he was a dishonest person. But he feared that I was gonna leave him because of it .. (pause) Well, he knows now. My commitment with him was ... until death do us part. How ironic. According to Mark, Denny kept his secret well. He was able to hide it from the rest of his family until six months prior to his death. Once Mark became aware of Denny's HIV status, things at home changed significantly. "He more or less went into reverse isolation. I kept the place spotless. We didn't go out a lot. He was really concerned about keeping as healthy as he could. I started getting more concerned making sure everything was sterilized ... Basically I tried to keep him from doing things that he did all his life, that were hard habits for him to break. As it progressed, it got to the point where he would wear a mask." Their sexual relationship changed drastically. "The most we did the last five years was touch one another .... We kissed once in a while. He really pulled back a lot. He wouldn't allow it to happen .. It wasn' t so difficult as far as our sexual ways went. We had hardly ever exchanged body fluids. It was more difficult for me feeling him pull away-more and more doors closing-in the name of love, in the name of


76 protecting me." Mark's life changed dramatically. "I sacrificed a lot to be there for him. I refused a lot of work because I wanted to stay at home and be there with him. And in that sense I would deny myself my own freedom, my own time, my own space . Mark and Denny moved to an apartment in Tampa .. "almost a year to the day before he died. At that point, we knew (pause) he wanted to die closer to his family. And I didn't care .. There was nobody in my family that I really cared to be around, so wherever he chose to be, I was going to be there." It was at this point that Mark fully realized the imminence of Denny's death: That's when I knew that he was (pause) going (crying). When we went around looking for houses. Up until then, it was always a compromise of what we both wanted. This place was perfect ... lt was big enough for both of us to run businesses out here. There's orange trees, and he always wanted orange trees. The yard was big enough for us to have gatherings. But what tipped it off was the fact that when we moved here .. he was telling me to make all the decisions ... I changed all the appliances, carpet, paint ... I made sure this place was sterile before we moved in. And we had one month together, actually, in the house. That one month was not only the hardest, but it was the happiest. We made our peace with one another ... he was at peace I'm crying now, but when he was alive, I never did. just couldn't allow myself to show any weakness .. I had to be there for him .. To watch someone you love just waste away and not be able to do anything about it ... I don't know how I maintained throughout his illness. I guess it was kind of denying my emotions. A lot of my strength has been from denial. 'He' s not going to die ... This isn t reai ... There's going to be a cure.' I had a lot of hope (crying). Only when I was alone did I cry or scream, o r beg and cajole God, and even the devil--to just take it away from him, leave him alone!! In discussing what was like to be an HIV negative partner to a person who i s positive, Mark noted that he sometimes had a sense of being left out:


77 "In some ways, it was easier for [Denny] to talk to his friends about his problems because they had AIDS and I didn't. There are some things that people who have AIDS can only talk about with other people who have it." Denny went to HIV support groups, and "for months, he wouldn't let me go. That was hard. I finally told him I wanted to go, and he said The group's not for you. It's for people w ith AIDS.' Eventually he broke down and found a group where we could both go Mark described living with Denny through h i s illness. He confesses to turning into a .. nag about eating, and making sure he stayed warm .. He usually gave me a hug and did what I asked. Denny's health became Mark's major concern, and "it was frustrating to work on these programs and see this little tiny result happen, and then it would not work, and he would go back again to being sick, and losing the weight he had just gained On the whole, Mark was pleased with the medical care Denny received, but he related one negative experience which occurred during an emergency room visit: "The nurses were great, but the doctor in the ER refused to touch him. Once he heard the word AIDS he literally turned around and walked away from me. He left me standing there with a man that was dying in the wheelchair beside me The nurse asked him about the dosage of the shot .. and the doctor just [shrugs and makes a face], like I don't care!' ... I wanted to kill h i m One difficulty that Mark faced was in getting Denny to make known his wishes following his death. "He procrastinated--' Oh I'll do it tomorrow, I'll do


78 it next week. I 've got to talk to my lawyer first.' Not knowing what he wanted to do about a lot of things was difficult. To have him write those things down was one of the hardest things to do, because he was saying I m not going to die right now. That was his denial. My denial was more denying the emotional aspects of it, not the reality of it." Although Denny had initially expressed his wish to die at home, he eventually went to the hospital. According to Mark, "He lost it in the last month. I had to carry him, change him, grind his pills feed him--everything!. . He ended up getting real sick, and wanted to go to the hospital. I know he did it partly for me. He knew I was going to fall apart, that's why he didn't want to die at home-he wasn't sure if I could handle it." Mark expresses his sense of helplessness at that point: "The hardest thing was knowing there was nothing that I could do .. there was no way I could stop what was happening ... When I brought him to the hospital, I said OK, you can let go. You've fought this long enough." Mark was not with Denny at the time of his death. He was involved in a car accident, which he largely attributes to his preoccupation with Denny, and was himself hospitalized for several days. "Those last three days were the only days we did not say 'Goodnight, I love you' to one another, and that bothers me. I feel like I couldn't say it enough, and then I wasn't the r e .. I wanted him to die in my arms so badly ... and I wasn't t here. And then I look


79 back at it and I think what he would say about it, and I know he would say 'Hey, so what? Three days--you weren't there for three days!"' Although Denny's mother and sister would visit, Mark was his primary caregiver. He had occasional clashes with Denny's mother, but they had a reasonably good relationship prior to Denny's death .. "but she's completely pulled herself away now. She doesn't call or anything, and that' s difficult .. since he's been gone, I'm finding out that his family is really homophobic. They're pulling themselves away from me completely. No support at all." Since Denny's death, Mark has been battling a sense of isolation and depression, and an undifferentiated anger that this could have occurred. He reports sleeplessness, lack of energy and motivation, frequent crying, and lapses of memory. "I'll be sitting here, and the next thing you know, I'm somewhere else It's been real scary because I ve been like, waking up at the Lowry Park Zoo--not knowing how I got there, or how long I've been there." He describes feeling disconnected from those around him. "It' s like I have nobody to share my life with anymore ... There's people that I can talk to ... but nobody I can sit with and hug and cry ... (softly) I want to be with my lover. In the past five years Mark has lost sixty-three friends to AIDS The Carrera Family Alex is a twenty-five year old male who contracted HIV through blood products used in the treatment of hemophilia His wife, Maria,


80 tested positive for HIV eighteen months after the birth of their four year old son, Juan. Their fourteen month old daughter, Angela, was HIV positive at birth and has been diagnosed with AIDS Her health has deteriorated drastically over the past year. Alex has been in poor health for the past two years. Except for some minor symptoms, Maria has remained in good health. The Carrera's are part of a large, close-knit family, with members in New York, Puerto Rico, and Tampa. They have been married for five years, and have been living with Maria's parents since Alex became ill. Alex and Maria had been dating for one month when he tested positive for HIV, and he told her immediately. He also shared the news with several of his family members, although he did not tell his parents until he got sick in 1992. "They're old, and my mom' s got ulcers, high blood pressure." Maria adds: "Every time she hears bad news, she goes into these horrendous anxiety attacks. I never told my parents about the situation either until I finally tested positive, and I still lied .. l didn't tell them that I had known all along that there was a possibility [of exposure], and I chose to stay with him." She eventually told them the whole story shortly before Angela's birth. "That caused a lot of problems. It was, of course, why would I put myself in that situation? They couldn't understand ... but even if you're in the situation, you tend to think 'OK, fine, but it's not going to happen to me! So I didn't protect myself in any way, and I should have ... l wasn't positive when I had my son, so I'm thinking I'm


81 hot shit, I'm this great thing because nothing had happened to me so far. So then I really felt nothing would ever happen to me." Most of their family and friends know the full truth now, and the Carrera's have experienced tremendous support from them. Maria speaks of her parents: "They didn't once say Well, since you put yourself in this situation . you deal with it!' They never, never told me that, which they could have ... [relates friend's negative experience with family and resulting community gossip]. You don' t realize how being in this situation can put your family into the situation .. There's still some family in New York that do not know about us, and when we go up this week, we're gonna be discussing it ... because I feel like I need to get it done. If I don't, then something happens, they're gonna wonder why we never told them." [Postscript: Maria did not tell the remainder of the family during their New York trip due to derogatory comments she overheard from some family members toward people with AIDS.] Others in Alex' family have hemophilia and HIV, but he is the only one in his immediate family with the dual diagnosis. Two of his older brothers died many years ago from complications of hemophilia. He describes the struggle his family has in accepting his diagnosis: I was the baby in a big family. It bothers them because I was always a good kid .... Never gave my mom and dad a problem. I 've worked since I was fifteen, always paid my own way, and I used to help them .. They felt like I shouldn't have been dealt the hand that I got. They feel so bad about that. But like my brother says, that' s the way God wanted it. As long as I can handle it .... lt makes [my dad] mad because some people are healthy and they don' t do nothin' with their


82 lives. They're just wasting time. Where if I had the opportunity that they have--. The intrusion of hemophilia and HIV/AIDS into their lives has changed many of the dreams the Carrera's once had Alex had wanted a military career, entering drug enforcement work after military retirement. When I graduated, all my friends went into the army special forces, and I didn't get to go .. I could have retired with two pensions and social security, and we would have been set ... When we first got married, we were going to try to save money and do the right thing. We really wanted four kids. We wanted to save $10,000 by now to buy a house. Things got--they get turned around, you know. It makes it a little rough. I was on a pretty good track, but when I found out I was sickit's hard because, when you think about it, why should you start [saving]? ... It's rough living with the disease because you're tied .. There's no future plans, really. For us to save money, it would be so we could leave something for Juan. Not for us Sometimes that bums me, and I get down. I want to have a career and work. I'm not a lazy person, and I don't like being home. It got so I couldn't work no more without getting sick, and I had no insurance or nothing, so it was better if I didn't work and applied for Medicaid and disability. I sometimes still think about saving, but you know we can't save nothin on disability. Sometimes I think it's not worth it on disability, I think what I'll do is just work until I die or something. But now everything for me is take care of myself and keep healthy for my kids. I want to be around for them, and Maria, because I'm their backbone and they're my backbone. So now everything doesn't mean that much. It would be nice to have your own house and a minivan, but those are just materialistic things--if they come, they come. The only thing is just to have my kids healthy, and my wife and me, and that's it. Maria discovered her HIV positive status when she attempted to join the military. Alex was still working at the time, but they had overused their credit cards and had $30,000 in medical bills resulting from his hemophilia treatment. After filing bankruptcy, military life appeared to be the solution for them, providing stable pay, family medical benefits and other support services. Maria


83 recalls: We would go and we'd start out fresh, you know-a fresh slate . . I was like 'Oh my God, I'm going to be somebody!' .. When I got the confirmation, I thought 'So, when am I going to die? .. With Alex, I didn't see him that way, though. It's weird! I knew he had it, but I didn' t think he was going to die tomorrow ... I haven't to this day ever blamed him [for the viral transmission], because I felt that he was honest with me from the very beginning, and I said that I was going to stick it out with him, no matter what happened. He told me everything that needed to be told, and that he was sorry, that he hoped he hadn't hurt me in any way, and that he understood if I never wanted to see him again . but I wanted to be with him. It didn' t matter to me at what cost. When Alex found out about Maria's test result, he recalls : "I wasn't surprised at all. I just wished it wouldn't have happened. But we always knew the chance was there, so--But I was worried about her, hoping she wouldn' t get sick because I had never gotten sick before then." According to Maria, she initially had more difficulty coming to grips with her diagnosis than did Alex when he tested positive. "He was getting over it when I was just finding out about myself. When he would even say HIV, I would say don't talk about it; don't say nothing about it. I would grab my keys and be out the door. I would just drive for hours, and he was of course freaking out because he didn' t know where I was. Now, however, she feels Alex is more inclined to deny the problem: 1 think everything through, and I let everything bother me, but then I get over it. Whereas I feel with him, one day it's gonna hit him all in one


84 big ball because he just blocks everything out, like 'Don't worry about it!' When he wound up in the hospital, he got scared, which I understand. Whereas with me, I had already gone through those feelings since I take everything through .... So it worked out well because when I go through my feelings, he's there to help me. And when he gets there and starts to break down, I've already done it so I'm there with him. Both Alex and Maria feel that their illnesses have brought the family closer than they might otherwise have been. Maria admits that their marriage might not have lasted due to stress they experienced prior to Maria's diagnosis and the birth of Angela, caused by overwork and financial problems following the birth of Juan: The fact of the virus wasn't so much of an issue at the time, but it was still there. It's not like we can ignore it. I think we both had good heads on our shoulders, but I guess we saw things too materialistic for what they were worth. I think this situation has made us see .. being together is what makes happiness .... It has made us build stronger in our relationship . .. We talk about things a lot better than we used to .. . It has taught us that we need to talk about how we feel about everything, and to be more affectionate to each other. I mean, we're not perfect, but there's not one day that goes by that we don't tell our kids or each other that we love them--not one day! At the present time, the couple maintains that they do not expend a great deal of energy worrying about their own mortality. Alex states, "I just do my everyday thing. I don't even think about it, not even when I get sick, because you've got to beat it mentally . people die quicker if you let it get to you." Maria comments: "I don't wake up and go 'Oh, my God--l 've survived another day!' I wake up like any normal-like everybody else and we laugh . .. Sometimes to put people at ease, we kind of joke about it ourselves, because ifthey feel that we're comfortable with our situation, then they're fine.


85 Then they'll ask us questions, and I like that. Now it's so much easier to talk about it." Alex notes, "We go days without talking about it. I think this disease crosses our minds more now only because of Angela, because I haven't been in the hospital, and Maria might get [some symptoms], but that can basically be with anybody." Angela was not the Carrera's first pregnancy after Maria tested positive for HIV. She became pregnant three months after her HIV diagnosis and, partially due to family pressure and limited knowledge about perinatal HIV transmission, she and Alex decided to obtain an abortion. This was a decision they both now regret. Maria explains: I didn't want to bring a baby into this world to hurt it, but I hated myself for what I did with the other baby ... for letting myself be talked into an abortion, knowing that I never felt comfortable doing something like that. Then when I was pregnant with Angela, I was at a conflict whether I should do it again, and I knew l ... really felt in my heart that I didn't want to. I wanted everything best for her, but I made the consciously (sic) decision to keep her, no matter what. Now that I have her, and she's in the situation she's in, I kick myself because I feel that the other baby had a better chance than she did ... There's just so many things [to weigh], you know? I still think about it to this day-was it a boy, was it a girl? "I think about it every day," says Alex. "I come from a big family, and I think about the way I was raised. I don't see how anyone can have just one or two kids. We just have two because we have no choice, really . The other baby would have been two and a half." Maria had a bilateral tubal ligation following the birth of Angela.


86 Making the decision to continue the second pregnancy was a difficult one, made more so by medical staff. Maria relates: Without our permission, [the clinic counselor] had set up an abortion for us, all paid and everything, so that if we chose to go that route, it was all taken care of. But I didn't like the fact that she made that decision without my input at all. It was very, very hard because we had been using protection-of course it wasn't the best. I mean they were only condoms, but we had used protection and I had gotten pregnant. I knew from the beginning she was a girl, and I wanted to have her, a n d nothing was going to change my mind. Now [Alex] wasn't sure, but he knew that he would stand by my decision. If i t was to have her then that was it! We were going to have her, and we were going to deal with everything together. My mom felt that Angela was meant to be. My dad, on the other hand, thought I was crazy! "My [family] felt the same way," reports Alex. "We just all--you're not on the road by yourself. We would just all take it as it comes." Soon after the birth of Angela, the .fears of the family were confirmed. HIV was detected in her blood. She did well for the f irst three or four months of her life, when she began developing frequent ear infections and respiratory illnesses. Her T-cells declined rapidly, and she began anti-vi ral therapy. At that point, she began to lose the developmental milestones she had achieved, and she became fretful and lethargic. Her condition has remained virtually unchanged since that time. Maria describes her experience as this sequence of events unfolded: I had always said I could never deal with a chi l d who had any type of disability or disfiguration--1 could never do that! Then when I was pregnant with Angela, I read an article about thi s Downs Syndrome child. For some reason, that article touched me in a way that you would never expect. In a way, I feel like God was preparing me for something like this. And then having Angela-and she was just a beautiful, perfect baby--going backward. And now we go into stores


87 and people say "Look at her, she's falling asleep!" She's not falling asleep She doesn't sit up, she doesn't hold her head up. And I'm not ashamed of her. Reading that article made me a lot stronger for a reason. I think my little girl is the most beautiful little girl in this whole world, and she's special. Alex shares his experience in the parenting of a family impacted by HIV\AIDS: [Angela] is so beautiful. She's just special, you know, with God and everything. Maria is closer to Angela in a special way than she is to Juan. But Angela won't function without me She eats better for me, and cries if I leave her. It's bad in a way because, like my mom said, what if I do get sick and have to be in the hospital? ... I'm real attached to my son, you know, but it's different. He's my buddy! I've got to admit I don't have a best friend ... but he follows me, he likes to be with me ... Next summer, I ll be there when he's playing Little League ball. I'll probably coach. So I ve got all that stuff to look for, and I just think positive. A lot of people wrote me off three years ago, but I'm going to watch him play Little L eag ue, and when he gets o ld er, I'm going to watch him graduate school. With [Angela] it's a lot different. She breaks my heart, you know ... I'm glad I've got the both of them. We said we would do whatever we gotta go through with her. As Angela's health deteriorated, plans were made by her health care providers to enter her in a pediatric AIDS study in Washington, D.C. Two weeks prior to leaving, however, Maria's mother and Alex saw a show on television about adverse reactions to antiviral medication. They noted that many of the described symptoms were similar to those they had observed in Angela. The decision was made by the family, after consulting with Angela's physician, to stop her medication and hope for improvement in her condition. Alex already feels there have been changes. "Now I get upset a little bit, 'cause so far for the first week off the medicine, she's doing excellent. Like she was just eating off a spoon, and she wouldn't do that before, and stuff like


88 that. God, if she gets a lot better and starts to crawl and sit up and walk, God! ... l feel bad because of so many months putting her through pain [with the medicine]. That's what she seemed like she was going through--pain." Maria describes the conflicts she feels concerning Angela, and making decisions regarding her medical care: I have nightmares about her, about this decision we made not to go to Washington. I have a restless sleep, and then I get up so drained. You want to do what's best for your daughter. I want her to live a better life for as long as she can, so me stopping her medicine put a lot of pressures on my head. Yes, we have seen improvements, but I still have the fear. I have nightmares I see my little girl in a coffin ... The reason I brought her into this world was solely to give her some sort of life, and for her to know that she had parents that loved her, and people that loved her all around. And that at least as long as she survives, whatever time that might be, she knew us. And I have accomplished exactly what I wanted to. You cannot prepare yourself for the death of your child, no matter what you do. And I don' t want to let her go, so of course I want to do everything that I can to prolong her life. So I'm stuck in a situation where I feel like did I make the right decision? And who am I to make that type of decision? Do I have that type of right? If it isn't (sic) for the fact that I strongly believe in God, I think that I would have gone crazy. My son was so looking forward to having a baby sister. How can we say to my son, 'Here's your sister!' and then she dies a year later? How do you explain that to your son? Angela is our focus. She's our main concern at this time with the virus. She comes first; we're putting ourselves second. Although Alex and Maria feel that Juan is too young to fully grasp the meaning of HIV/AIDS, he does r ealize that his family is ill. Maria describes his responses to the various family members: 1 see him with his sister--maybe he doesn't know what HIV and AIDS is about, but he knows something's wrong and she's sick. Daddy's sick, mommy's sick. Daddy needs medicine, Angela needs medicine. He knows all that. He knows I'm sick, but not as bad. He s always on top of his father [to eat and take his medicine]. He knows that I'm the same, but because he doesn't see me take medicine, he doesn't relate

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89 it to me as much, and I guess that's why he doesn't concern himself with me so much. Whereas I don't, either. I'm so busy with the baby that I'm like 'He's OK. He's old enough, he can do things on his own.' A major problem in the life of the Carrera family has been in negotiating the various bureaucracies in order to establish and maintain medical and financial assistance for all of the family members, and in keeping medical appointments with several different providers in different locations. According to Maria, "We've travelled hundreds of miles in one week, keeping appointments for all of us ... It becomes very stressful because when you want services like that, you're dependent, and that's very hard to deal with when you're not used to it ... This situation [HIV/AIDS] is stressful enough. You don't need any more added stress!" The Duvals Lou is a thirty year old African American woman from rural Florida who is now living in Tampa and undergoing treatment for drug addiction and HIV. She recalls: "I came from a small lit t l e country town where people thought AIDS would be the least thing. No precautions or no signs of it-no way for a person on the street to know what was going on, so that's how I contracted the virus." Lou has four children, ranging in age from five months to nine years. None of the children test positive for HIV. Lou has been married to Jim, the father of her baby, for almost one year. H e is a lso HIV negative. The family is living in a one bedroom apartment "with a big bed and a small bed

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90 in it. Usually Jim and I sleep in the small bed and let the kids have the big one." Lou's mother and sister are also living in Tampa. Lou's third child was born while she was in prison, and she was HIV negative at that time. The virus was discovered when she went to a clinic for a pregnancy test last year. At that time she was diagnosed with syphilis, as well. At one time, I wanted to abort the baby. I wanted to give up. At that time, I was still using crack cocai ne, and it was like d idn't nobody care about me. I didn' t care. I felt like this little kid that had never been born. Then I went into treatment because I needed help, and thank God there was somebody there. I came out clean, I came out sober, but I didn't come out Lou because I was HIV positive. It was a while before Lou could bring herself to tell anyone in her family about her diagnosis. "I just couldn't make it," she says. Then my grandfather died, and I went off for a while. My mind was streetness, I was pregnant, smoking crack ... Then it just seeped up. I tol'my mom "I'm sick, I'm dying. She say "Everybody is!" I tried that little cancer routine on her at first, then a week later I told her I got [the] AIDS virus, and I'm really low so she might as well go ahead and plan. And she said "Oh, get outta here!" like she didn't really believe me. I had three other kids at the time, in her custody because I was on drugs. Then she said, "Well, you need to get outta here and get you some help." So I had told my mother. I had told my sister. And you know, some people ... give you their word "I'm not going to tell nobody ... You know, my mother told her best friend, and my sister told her best friend, and their best friends told someone, and it was like "Shit, I can't talk to my momma, I can't talk to my sister." I didn't have anyone. I just wanted them to give me the chance to figure it out, between us three ... Me and my mother, we don't have this great understanding no how. And my sister, she's going through some problems. It's like they know what I'm saying, but that's it. They hear me but I get around so good that they figure 'Well, she (sic) alright.' It hasn't touched them. What's gonna happen the minute I go in the hospital the first time? That's when it will hit them ... that's what's gonna take them a-tremble, I call it.

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91 Lou has known her husband, Jim, since 1991. He is an older man, and is from Jamaica. "I thank God for him," says Lou. "I told him he's seventy-one years old, he don't have to work every day. He picks fruit, up and down the ladder ... He's still working full time, pickin' fruit six days a week. In September, he goes to North Carolina and pick (sic) fruit. But this year, he's gettin' his green card and everything straightened out so he can draw unemployment, and he won't have to do it. She was very concerned about telling him of her diagnosis. I felt like I was gonna lose everything. What the hell I'm gonna tell this seventy-one year old man? He s from Jamaica, raised in the woods. Diseases was something they never worried about because they was old I prayed about it, and I just wondered. It took me so long to understand [the disease], and it's so hard to teach this man how to push the toaster down and don't hold it. He'll stand there and hold it because he thinks if he turns it loose, it's gonna fly. And then here I am, trying to make him understand AIDS? You ever try to explain somethin' to somebody and they're like "Uh-huh,' and then the minute you tell 'em to go do it, they (sic) lost? That's Jim. [If he does understand] he gonna say, "Well that must be none a (sic) my baby [since] I ain't got your AIDS!" That's when I came up with [an excuse] to use condoms. Then I told him this lie, man. I told him the baby might not live because I got this cancer that might get to him. And this was bubblin'! This was causing me to use more drugs; thi s was not helping. Then I decided, after my grandfather died, ... I can't lie no more. [A show about AIDS] was on TV, and I said that's what I have. I said 'Jim, we'll never be able to have sex without no condoms again.' I say (sic) 'You'll be lucky if your baby don't get it.' And he said 'Well, if we have one day with him, . And I still am just wondering--do this man understand? So one day, I was just about too upset, and I said "I'm dying. I have AIDS, and I m dying!" He says "How many times you goin' to tell me that?" And then it drilled on me--he do understand. And when he told me don't mention it to his family, let it stay--that' s what made me honestly know that he understand (sic) And now, every now and then, he'll see me talkin' shit or somethin,' he'll say that's what got you where you were, out there on those streets. He'll draw me back. We got this understanding now

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92 where, if we feel like we need to talk, we'll go off and take a walk. We don't have any arguments, and we sleep peacefully now. We laugh and talk. Good with the baby--that's his baby, man! I believe he got a second life. Jim does not use drugs. Lou laughingly claims, "If you take a cube of sugar and a cube of rock [crack cocaine], Jim would probably put the rock in his coffee!" Lou admits that he was an unknowing participant in her own addiction, however: "He was supportin' my habit when I first met him. He didn't know that's what he was supporting. He thought he was helpin' with the children, while I was getting a [public assistance] check all the time. He knows now." Lou feels far from free of her addiction: You know, I sold my soul. When you use, you give what God gave you away. You know that old mud feeling? You step in mud, you can take a bath, but when you look down, there's still a little piece somewhere? ... ain't 'clean' clean yet. I'm clean by not using, but my spirit still thinks about it, and my flesh still twinches (sic) it. So I'm trying to get that out ... I used eight years. It's in the soul. At Jim's request, Lou has not told his family about her diagnosis and does not intend to. Most of his family is still in Jamaica, but several have moved to the Tampa Bay area. He accepted it, but they (sic) old people, and they're cane-straight. They wouldn1t understand it ... he knows their native ways, and he said they would scorn him out of the family. And I would hate to see him at seventy-one years old like that. He's a good man .... One of 'em's always bugging me about why I donrt work, and I tell 'em I threw my back in an accident. We leave it like that, 'cause sometimes you just can/t tell a person. I've heard [Jim/s sister] say, "Them nasty dickens, them with AIDS!" And Jim was like [scared facial expression]--he thought I was fixin' to blow it! You could see his forehead wrinkle. But 11m not going to melt nary a day of my life while trying to explain to some jackass that I got this disease and they don't have to worry about

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93 it! They not worryin' about it when I don't tell 'em, so just leave that be. Lou's nine year old daughter, Carmine, now knows that HIV/ AIDS has impacted her family, and Lou says the four and one half year old realizes that her mother sometimes does not feel well, although she has not been told the cause. "She's coo-coo claims Lou. "She ain't ready yet. She's at her toddler stage. While she wants her mommy at this stage, let her have her mommy! But she knows something-she's got that gut feeling." The three year old and the baby do not seem to b e aware of anything amiss. Lou does not have full custody of her children, but "I'm in this trial period seein' if I can do it. I'm getting classes. My mom had custody before, so they've never been out of my family. I want them to make it to an age so I ll know everybody can take care of each other. Then I can sit down and rest." Lou describes her first conversation with Carmine about her diagnosis: She had a stack of HIV pamphlets, a nd she brought me home this Tshirt from a project they had in the park They asked them a qu estion, and she won the T -shirt. She gave me this shirt, an d this was when I decided i t was time to tell her. It was "Help Stop the AIDS Virus," and here I am, already HIV positive ... and I'm like, "Come on, baby, we got to talk!" I was trying to figure out just the right thing to tell her .. .. We got on the subject of my father dying, and I said "You know, some day something might happe n to me, or grandma." ... I started crying, and I said I got this right here [pointing to shirt]. She said "What?!" And I said "I got this right here. I didn't do the things they just taught you in your class, and I have this." She said "Momma, I don't want you to die right now." .... I was gonna wait until she was about twelve [to tell her], but by them teaching her in school and everything, a nd the stuff she sees, she might figure it out on her own, and i t would hurt her.

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94 Carmine is very protective of her mother, although Lou claims, "I try to give her a chance to be a kid again. She don't have to come home and take care of the other children anymore. I do that." Although they do talk about HIV/AIDS from time to time and Carmine appears to have accepted it, Lou suspects that she sometimes is" ... very emotional. She'll hide; she's a closet crier." Carmine takes control of the other children when Lou is not well, and they cooperate well with her. Lou states: You know, that just give (sic) me a burn [emphasis] to know that they're growing with it; they' re adopting (sic) to it. It's like I don't even have to tell 'em--they notice somethin' ... After we got back from the park, I heard the second one say "Come on, we can t be trouble now. Momma had all these children today--she's wore out!" And Carmine said "That's a good girl! Come on." And they took the babies, and everybody went out of the room. And I was like "Damn, I 've got some good children!" On several occasions, C a rmine has e x pressed concerns about what will happen to the siblings if Lou should die Lou on the other hand, tries to put it out of her mind: As far as my kids I sense the virus, and I used to worry about what' s gonna happen if I die, and it would bother me. But now, they know each other, and they' ll be OK. My oldest was telling me, "Momma, we'll be like those people on TV, twenty years from now, looki ng for each other." I said "Jim isn't gonna let that happen to y 'all!" She said, "'Cause if they take 'em from me, I'm gonna find 'em!" .... And then again, Jim is an old man. But my sister has three [children], and she said, regardless of what would happen, s h e would just have to make room [for Lou s children] ... told her the money's gonna be there for 'em. She said "Nobody's worried about no money. You just better stay your ass healthy and raise 'em up where they can clean up behind theirself, because I ain't gonna be clean in up behind 'em!" [Laughing] You know, we try to keep a spirit up. I want it in my will that if Carmine's eighteen, nobody can take the others from her. And if Jim wants to keep them, nobody can take none of them from him. I don't

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95 care who gets this and who gets that, but when it's as important a thing as a person's little girl or little boy, you gotta have it in black and white! ... l just leave it in the hands of God, but I need to get that will thing straightened out. Lou's children have benefitted a great deal from the children's program that TAN has recently begun to develop. "My children love the word TAN, because when they think of TAN, they think of Lowry Park, Busch Garden, the Christmas party. There's a lot of places my children go they probably wouldn't be able to go without TAN ... I feel like one more day at the park won't be too many ... I'm doing things [with the children] right now that maybe those kids will remember me one day. They might pass by Lowry Park [with their children] and say 'She used to take us to Lowry Park when we was children y alls size.' I want to be able to do something, to leave something somewhere. Lou becomes frustrated and exhausted at times over the energy required to get the services she needs for her HIV, drug treatment, and parenting problems. She describes a confusing array of services that initially were presented to her, and a sense that she was not taken seriously as a person. "When you come from a seventh grade education, selling drugs, it's hard to get somebody to hear you." She eventually was referred to TAN, and has found it much simpler to work through that agency, but she still faces a challenging schedule. I go to the doctor all the time, and they have these groups every day. I quit going to half of them because it was killing me. I was going to meetings at night, and getting the children to school in the morning, and getting back home just in time to meet them. And at this time, I didn't have a car. Boy, I couldn't make it! ... My doctors are the hardest thing

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96 to deal with--keeping my appointments, accepting what they tell me and trying to half-way understand ... It sounds like they leave something out, and I'm trying to learn how to understand so I'll know what they (sic) leavin' out. Like many others have suggested in the course of this research, Lou notes that the effects of HIV on her personal and family life have not all been negative. There's some good things that have come out of my disease I isn't just gonna say my disease made me suffer, because if I didn' t know I was sick, I d probably still be using [drugs]. I'd probably have lost my baby. I know I wouldn't have the place that I have now, and the car, or the help that I have right now. If they hadn't told me I was sick, I probably would have been still on the street ... these programs were there for me ... they' re teaching me that I wasn't the dummy that they've been telling me all my life. [Friends and family] said "You ain't never gonna amount to no good ... You're just gonna be crazy as hell!" So eventually, I thought that (sic) what I was supposed to be. It [the virus], in the long run, helped me to see the other side. The children wouldn't have been with me. Out of the millions of people that got it and can't think of one reason, I m one of those jackasses that say "Well, I got somethin' out of it." ... I've come a long way with my life. I had to, man--1 didn't have no choice! [Post script: At the time of this writing, Lou is once again actively using drugs and living on the street. Her children are in the custody of her mother. The whereabouts of Jim are unknown.] Summary Although there were no significant changes in age of TAN clients from 1986 through 1992, the changes in sex, ethnic group and risk category composition are highly significant. These changes indicate that the epidemic

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97 of HIV/AIDS is cutting a widening swath through our society, affecting increasingly varied segments of the population. The situations and experiences of families impacted by the epidemic may vary, but they face many common issues that are faced which cut across boundaries of class, gender, ethnicity, transmission risk category, and family type. The main themes expressed by informants in this research center around fear and denial; struggles to live with ambiguity; putting lives on hold; concerns for the future; economic stress; keeping secrets; feelings of guilt; isolation; neglect of personal needs; concerns regarding children; sense of being left out; tensions within the family; and altered concepts of self and family. A number of informants suggest that living with the virus has not been an entirely negative experience. These individuals report improved communication with partners or others, strengthened marriages, resolution of long standing family conflicts, and reordered priorities as positive outcomes of the illness experience. The experiences of these families can inform the development and maintenance of support services which seek to improve the lives of people w ith HIV/AIDS and to lessen the impact of the epidemic on society as a whole.

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98 5 CONCLUSIONS Since HIV and AIDS have been recognized as epidemic, most of the research attention has understandably been focused on the epidemiological, prevention, and treatment aspects of the disease. The efforts of health care and social service delivery systems have been largel y directed toward the people who are infected with the virus, with little attention pa i d to families who are affected by virtue of close relationships with these individuals. As the path of the epidemic widens and it assumes increasingly chronic proportions, the impact on families will become more marked. In order to support t hese families, it is necessary to gain a broader insight in t o the i ssues w ith which they are confronted in the midst of the epidemic. Implications of Quantitative Data The demographic data from TAN reflect that noted i n the literature regarding the impact of the virus on individuals duri ng their most productive years, and on marginalized groups. Several features in the quantitative data analysis are of particular importance for this research The changes i n gender composition may be indicative of continued shifts in t his area and may require

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99 different program interventions, particularly since many of these women are single parents and may have children who are also HIV infected. The increases among the heterosexual and blood product categories may also be indicative of increased impact on entire family units, including children. Although the percentages of gay and bisexual male clients have decreased these groups continue to comprise a major portion of the HIV population, and most of them are involved in some form of family unit. Since the risk category of intravenous drug use has increased nationally and state-wide over time, the decrease in drug users served by the agency suggests that there may be a number of affected families not accessing services that could enhance their lives Given these changes in demographic composition, it is evident that programs designed to serve only the client with HIV/AIDS are increasingly addressing only part of the problem. Implications of Qualitative Data The family members contacted in the course of this project reflected many of the issues raised in the family therapy literature. Not every family confronting the epidemic will encounter all of the issues presented in this research, and there are likely to be experiences which vary from the descriptions of these informants. However, such information can play a role i n increasing awareness of the issues faced by families dealing with HIV/AIDS,

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100 and suggesting solutions for service organizations and others interested in providing assistance. The reality is that nothing can be done about many of the issues these families face, but heeding their experiences can inform us of the possibilities for helping that do exist, as well as of the potential for causing harm. Attention to the experiences of families can suggest preventive measures in working with other families over time. The qualitative data in this research indicates a number of approaches that may be of benefit to families facing HIV/AIDS. Recommendations A number of methods for improved service to families affected by HIV/AIDS are suggested by the data. These are directed toward policy-makers, agencies serving people with HIV/AIDS, and persons involved in providing care to those affected by the epidemic. Policy Level Some of the problems confronting families are embedded in large bureaucratic systems and are therefore difficult to remedy. For example, many family member informants expressed feelings of guilt over having to leave the sick individual in order to work, and concern that they would be well cared for.

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101 Funding is available for home care attendants under the Medicaid waiver program, but the state does not allow family members to fulfill this function. The care giver must be li censed and employed by an approved home care agency, and it is considered to be a conflict of interest for a family member to assume that role As a result, family members must go outside the home to earn money, and the care of their loved one is left to strangers. The Health Resources and Services Administration (HRSA) funds an adult services program that will provide a stipend for family members assuming the home care role; the rate is $100 per month, and there is a two year waiting list. For most families, that is too little, too late. Public funding, in general, is targeted toward prevention education and treatment of persons with HIV/ AIDS. Inclusion of other persons affected by the disease will require major policy changes at the state and national l evels. Agency Level Many informants expressed frustration at having to spend so much time and energy on keeping medical and socia l service appointments. The development of a family-centered AIDS clinic utilizing a family case management approach could be of benefit, particularly in situations where multiple family members have the disease. This approach could prevent or minimize the fragmentation and duplication of services and save clients

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102 considerable time, anxiety, and transportation expense. At the very least, increased effort needs to be made to provide families with appropriate and up to date information regarding available services, and to coordinate referrals between providers. Lack of awareness of existing programs may be problematic for many families. Improved outreach to target populations is also critical. Lack of information results in lack of access to services for these individuals. Although many of the AIDS service organizations in the area do provide some services for families impacted by the disease, much of their effort is directed toward families in which parents have contracted the illness. There are a number of programs an AIDS service organization might consider that could alleviate some of the stresses on other families affected by the epidemic, as well. Since funding is a problem, private donations or volunteer services might be used effectively in this area. On initial client intake records and periodic needs assessments, it would be informative to include issues affecting family members. Since many family members express reluctance to leave their loved ones, a buddy program for family members could be developed. This could be patterned after the client buddy programs offered by many service organizations, utilizing volunteers assigned strictly as a buddies to the family members. This would serve to lend support, decrease isolation, focus attention on the family member, and reduce the amount of time spent away from the home.

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103 Day care for PWA's might be considered. Such programs serve to benefit the ill person while reducing the concerns of working family members about leaving them home during the day, as well. As noted previously, this had been attempted at TAN at one time but lack of transportation proved to be a barrier to utilization. Purchase of a van with private donations, or development of a pool of transportation volunteers would alleviate that problem. This transportation program could also be utilized by clients for other outings not covered by Medicaid transportation funding. In another transportation related issue, agencies might consider developing a car seat bank for families with small children who cannot afford the expense of purchasing one. Donations of money or used car seats could be utilized to support such a project. Development of a respite care program for children in HIV-impacted families might be considered. This would be particularly beneficial in situations when the caregiver has HIV/AIDS and requires hospitalization or a few days of rest. It may be possible for an agency to collaborate with existing child care services to develop such a program, or to utilize trained volunteers as temporary child care providers. Many informants mentioned their desire to share positive experiences with their ill family members, in spite of limited budgets. It is important to encourage and support these family experiences; they assist in relieving stress and increasing energy in the present, and provide positive memories for the

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104 future. Development of a transportation program and active recruitment of donations of materials, money, tickets for events, and related items could assist this effort. Several agencies provide support groups for both clients and family members facing the AIDS epidemic. These groups offer individuals the opportunity to share experiences with others and gain insight and information that may be helpful to them in their own experience. Since isolation is an issue with most families, agencies should foster the creation of these new communities for those who are affected. The development of groups with focus on specific issues for families could also be benefici al For e x ample, anticipatory grief groups might better prepare family members to face the latter stages of the disease with their loved ones, and to provide comfort when death occurs. Programs that support children are critical. The occasional offering of topic oriented sessions relating to issues facing family members could also be helpful, particularly for those who are hesitant to commit time and energy to an ongoing group. Agency staff who develop expertise regarding the impact of the disease on families could be available to provide training for health care and service providers, increasing their awareness of the family issues involved with HIV/AIDS.

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105 Care-Giving Level Changes in policy and development of programs are not the only solutions for families involved in the epidemic. Alterations in attitudes and perceptions among service providers can also make a significant difference. For example, a number of family members expressed lack of understanding of information they are given by physicians and other service providers. It is important for providers to develop an awareness of the degree to which their explanatory language is understood by the receiver. Another area in which alteration is warranted pertains to the manner in which drug addicts and gay men are often perceived as isolated units. In reality, they generally are very involved in family groups which could benefit from attention and support. Service providers are not the onl y groups exhibiting deficienci es of thi s nature. AIDS activist groups have a strong tendency to focus solely on issues pertaining to PWA's; little attention is paid to others who ar e deeply affected by HIV/AIDS. Another attitudinal shift that could provide comfort and reassurance to family members should be a relatively simple one to make. Many informants noted the amount of provider attention that is focused on the person with HIV/AIDS, leaving them with the feeling that they were of little significance. If providers could widen their focus for a moment, a few words of recognition, concern and encouragement directed toward the family members would be of

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106 benefit; it validates their experience and often imparts renewed energy to face the challenges inherent in living with HIV/ AIDS It is evident that family members are heavily impacted when a loved one contracts HIV, and that much of the burden of care will fall on them. Their need for support is great, but their need for denial is often equally great; it enables them to endure thei r situation. Many people who are affected by the epidemic are not willing to face that fact until they are overwhelmed by crisis and actively grieving their actual or potential losses. This has implications for service providers in that it is more difficult to support affected ind ividuals under those circumstances. Denial also has implications for prevention efforts; if risk is not acknowledged by affected individuals, safer practices are not likely to be incorporated into their lives However, preserving a degree of denial and a sense of hope are necessary for survival in many cases. It is important for those working with families to adopt a balance between the maintenance of this protective state and the promotion of activities that will prepare the family for the realities of the disease. Participation in activ e planning and preparation for the eventualities of HIV/ AIDS can decrease f ee lings of helplessness and hopelessness for family members. Even though the future may be l a d en with uncertainty for families affected by HIV / AIDS, it is appropriate to encourage short term planning and goal setting.

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107 The Role of Anthropology Anthropology can play a significant role in addressing the problems of the family in the context of this epidemic. Anthropological research methods lend themselves to such issues Ethnographic techniques, which are a hallmark of anthropology, allow the derivation of deep meaning from qualitative data. The broad perspective of the holistic approach considers the implications of a wide range of influences on human activity. An anthropological research orientation illuminates the ways in which societal systems and theoretical frames of reference intersect with the lives of real people. Patterns can be discerned from the analysis of data, making predictions possible and allowing consideration of the social implications of families coping with the epidemic. In addition, insights gained from anthropological research can be put to use, informing policy decisions and program planning efforts. This holistic and realistic anthropological perspective is equally useful at the le vel of program implementation and problem solving. Advocacy and cultural brokerage are other areas in which anthropologists can benefit these families. The contribution of family therapy to the literature in this area and to the well being of individual family members i s significant (Macklin 1988). However, the breadth and depth of knowledge and its application that anthropology brings to the issue can impac t the response of society and the success with which individual family members ma nage to cope with the illness of HIV/AIDS.

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108 Summary As the HIV/AIDS epidemic continues to cut a widening swath through our population, individuals, families, agencies and communities are increasingly affected. It is evident that an HIV/AIDS diagnosis in the family places severe stresses on its members, and that these stresses and the stigma associated with the disease often lead to difficulty in accessing usual support systems for those affected. Although little is found in the literature regarding the effects of HIV/AIDS on family systems, the issues that family members bring forth can inform systems, agencies, and individual service providers in the planning and provision of services for those involved. Anthropology, with its holistic approach and orientation toward qualitative methodologies, is particularly well situated for gaining insight into the problems faced by families and for considering effective interventions relating to the issues they raise. Moving beyond the descriptions and interpretations of family therapy, the anthropological view allows an understanding of the full context of the lives of these families and how they relate to existing support systems. Developing support systems for affected families is critical in responding to HIV/AIDS. The challenges they face are often uncommon and they are in need of guidance and support in the process. Although their problems and their contributions often go unnoticed, families have a significant part to play in determining the degree to which the epidemic

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109 will be felt by society as a whole. After all, as resources are stretched to meet the demands of the epidemic, it is the level of family functioning which largely determines where the physical and financial burden of care will fall. In turn, it is the level of societal support which will largely determine the ability of the HIV/AIDS affected family to meet its particular challenges

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110 REFERENCES Altman, Dennis 1987 AIDS in the Mind of America Garden City, NY: Anchor Books. American Health Consultants 1993 Minorities, Women are Fastest Growing AIDS Populations AIDS Alert: Special Report 2 /93:1-3. Bateson Mary Catherine and Richard Goldsby 1989 Thinking AIDS: The Social Response to the Biological Threat. Reading, MA: Addison-Wesley Publishing Company, Inc. Beer, Christopher et al. 1988 AIDSthe Grandmother' s Burden In The Global Impact of AIDS A.F. Fleming et al., eds. New York: Alan R Liss, Inc. Bernard, H. Russell 1988 Research Methods in Cultural Anthropology. Newbury Park CA: Sage Publications. Bolton, Ralph 1989 Introduction: The AIDS Pandemic, A Global Emergency Medical Anthropology 1 0(2-3) :93-104. 1992a Mapping Terra Incognita: Sex Research for AIDS PreventionAn Urgent Agenda for the 1990's In The Time of AIDS : Social Analysis, Theory and Method. Gilbert Herdt and Shirley Lindenbaum, eds Pp. 124-158. Newbury Park, CA: Sage Publications 1992b AIDS and Promiscuity: Muddles in the Models of HIV Prevention. Medical Anthropology 14(2-4): 145-223. Bourne, G. Mary 1989 Preface In AIDS and Families Eleanor D Macklin, ed. Pp xi-xvi. New York: Haworth Press Briggs, A. 1961 Cholera and Society in the Nineteenth Century. Past and Present 19:76-96.

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1 1 1 Brown, Kate 1993 Descriptive and Normative Ethics: Class, Context, and Confidentiality for Mothers with HIV. Social Science and Medici ne 36(3): 195-202. Carbello, M. and M. Carael 1988 Impact of AIDS on Social Organization In The Global Impact of AIDS. A.F. Fleming et al., eds. New York: Alan R Liss, Inc. Carrier, Joseph M. 1989 Sexual Behavior and Spread of AIDS in Mexico. Medical Anthropology 1 0(2-3): 129-142. Carrier, Joseph and Ralph Bolton 1991 Anthropological Perspectives of Sexuality and HIV Prevention In Annual Review of Sex Research, Vol. 2. John Bancroft, ed. Pp. 49-75. Lake Mills, 10: Society for the Scientific Study of Sex, Inc. Casper, Virgini a 1986 AIDS: A Psychosocial Perspective In The Social Dimensions of AIDS: Method and Theory. Douglas Feldman and Thomas Johnson, eds. Pp 197-209. New York: Praeger. Centers for Disease Control and Prevention 1992 HIV/AIDS Surveillance. Third Quarter Edition, October, 1992. Conant, Francis P. 1988 Social Consequences of AIDS : Implications for East Africa and the Eastern United States In AIDS 1988: AAAS Symposia Papers Ruth Kulstad, ed Pp. 147-156. Des Jarlais, Don C. et al. 1990 Heterosexual Transmission of Human Immunodeficiency Virus from Intravenous Drug Users: Regular Partnerships and Prostitution In AIDS and Sex : An Integrated Biomedical and Biobehavioral Approach. Bruce Voeller et al, eds Pp. 245-256. New York, Oxford: Oxford University Press. Drucker, Ernest 1991 Communities at Risk: The Social Epidemiology of AIDS in New York City In AIDS and the Social Sciences: Common Threads. Richard Ulack and William F. Skinner, eds. Pp. 45-63. Lexington: University of Kentucky Press

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112 Ehrhardt, Anke A. et al. 1991 Sexual Behavior in the Era of AIDS: What Has Changed in the United States? In Annual Review of Sex Research, Vol. 2 John Bancroft, ed Pp. 25-49. Lake Mills, 10: Society for the Scientific Study of Sex, Inc. Farmer, Paul 1990 AIDS and Accusation: Haiti, Haitians and the Geography of Blame In Culture and AIDS. Douglas Feldman, ed. Pp. 67-92. New York, Westport, London: Praeger. Feldman, Douglas A. 1990a Introduction: Culture and AIDS In Culture and AIDS Douglas Feldman, ed. Pp. 1-8. New York, Westport, London: Praeger. 1990b Assessing Viral, Parasitic, and Sociocultural Cofactors Affecting HIV-1 Transmission in Rwanda In AIDS and Culture Douglas Feldman, ed. Pp. 45-54. New York, Westport, London : Praeger. 1991 The Sociocultural Impacts of AIDS in Central and East Africa In AIDS and the Social Sciences : Common Threads Richard Ulack and William F. Skinner, eds. Pp 124-133. Lexington: University of Kentucky Press. 1993 Personal communication. Miami, FL Feldman, Douglas and Thomas Johnson 1986 Introduction In The Social Dimensions of AIDS: Methods and Theory. Douglas Feldman and Thomas Johnson, eds Pp. 1-12. New York: Praeger. Frankenberg, Ronald 1989 One Epidemic or Three? Cultural, Social, and Historical Aspects of the AIDS Pandemic In AIDS : Social Representations, Social Practices Peter Aggleton et al., eds Pp. 21-38. New York, Philadelphia, London: The Falmer Press. Gorman, E Michael 1991 Anthropological Reflections on the HIV Epidemic among Gay Men. The Journal of Sex Research 28(2):263-273. Kane, Stephanie and Theresa Mason 1992 "IV Drug Users" and "Sex Partners" : The Limits of Epidemiological Categories and the Ethnography of Risk In The Time of AIDS : Social, Analysis Theory and Method. Gilbert Herdt and Shirley Lindenbaum, eds. Pp 199-223. Newbury Park, CA: Sage Publications.

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113 Langness, L. L. and Gelya Frank 1988 Lives: An Anthropological Approach to Biography. Novato, CA: Chandler & Sharp Publishers, Inc Leary, Warren 1993 Spread of AIDS is Spurred by Racism, U.S. Panel Says New York Times 1 /12/93:A 14. Macklin, Eleanor D. 1989 Introduction In AIDS and Families Eleanor Macklin, ed. Pp. 1 -12. New York: Haworth Press. Mann, Jonathan 1988 Global AIDS: Epidemiology, Impact, Projections, Global Strategy In AIDS Prevention and Control. World Health Organization and the United Kingdom Government, eds. Pp. 3-13. Oxford: Pergamon Press. Marks, S. 1989 The Contexts of Personal Narrative: Reflections on Not Either an Experimental Doll In Interpreting Women's Lives: Feminist Theory and Personal Narrative. Personal Narratives Group, ed. Pp. 39-58. Bloomington: Indiana University Press. Mattison, Andrew and David McWhirter 1990 Emotional Impact of AIDS: Male Couples and Their Families In AIDS and Sex: An Integrated Biomedical and Biobehavioral Approach. Bruce Voeller et al. eds. Pp. 401-419. New York, Oxford: Oxford University Press. McCombie, S.C. 1990 AIDS in Cultural, Historical, and Epidemiological Context In Culture and AIDS. D.A. Feldman, ed Pp. 9-28. New York, Westport, and London: Praeger McElroy, Ann and Patricia Townsend 1985 Medical Anthropology in Ecological Perspective. Boulder and London: Westview Press. McNeill, William H. 1976 Plagues and Peoples. Garden City: Anchor Press.

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Mickleburgh, Rod 1993 Native Study Finds Unsafe Views on AIDS. Toronto Globe and Mail 1 /13/93: A 1. Mulready, Geraldine et al. 114 1989 Injecting Drug Use and HIV Infection-Intervention Strategies for Harm Minimization In AIDS : Social Representations Social Practices Peter Aggleton et al., eds. Pp. 199-210. New York, Philadelphia, London: The Falmer Press. Ninth International Conference on AIDS 1993 Conference News. June, 1993. National Commission on AIDS 1989 Report Number One: Failure of U.S. Health Care System to Deal with HIV Epidemic. 12/ 5 /89. 1991 Executive Summary: America Living with AIDS. 9 /25/91. Needle, Richard et al. 1989 The Human Immunodeficiency Virus (HIV) Epidemic: Epidemiological Implications for Family Problems In AIDS and Families Eleanor Macklin, ed. Pp. 13-37. New York: Haworth Press Nelkin, Dorothy et al. 1991 A Disease of Society: Cultural and Institutional Responses to AIDS. Cambridge: Cambridge University Press Niehaus, Juliet A. 1990 Increasing the Cost of Living: Class and Exploitation in the Delivery of Social Services to Persons with AIDS In Culture and AIDS Douglas Feldman, ed. Pp. 183-203. New York, Westport, and London: Praeger Ornstein, Michael 1992 Aspects of the Political and Personal Sociology of AIDS: Knowledge, Policy, Attitudes and R isk. The Canadian Review of Sociology and Anthropology 29(3):243-265. Pivnik, Anitra et al. 1991 Reproductive Decisions Among HIV-Infected, Drug-Using Women: The Importance of Mother-Child Coresidence. Medical Anthropology Quarterly 5(2) :153-169.

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115 Potts, Malcolm 1990 Cross-Cultural Perspectives on AIDS: A Commentary In AIDS and Sex: An Integrated Biomedical and Biobehavioral Approach. Bruce Voelleret al., eds. Pp. 211 -218. New York, Oxford: Oxford University Press. Quam, Michael D. 1990 The Sick Role, Stigma and Pollution: The Case of AIDS In The Culture of AIDS. Douglas Feldman, ed Pp 29-44. New York, Westport and London: Praeger. Schiller, Nina G. 1992 What's Wrong with this Picture? The Hegemonic Construction of AIDS Research in the United States. Medical Anthropology Quarterly 6(3):237-254. Schneider, Beth E 1991 Women, Children, and AIDS: Research Suggestions In AIDS and the Social Sciences: Common Threads. Richard Ulack and William F Skinner, eds. Pp. 134-48. Lexington: University of Kentucky Press Schoepf, Brooke G. 1988 AIDS, Women and Society in Central Africa In AIDS 1988: AAAS Symposia Papers Ruth Kulstad, ed. Pp. 175-181. 1991 Ethical, Methodological, and Political Issues of AIDS Research in Central Africa. Social Science and Medicine 33(7):749-763. 1992 Women at Risk Case Studies from Zaire In The Time of AIDS: Social Analysis, Theory and Method. Gilbert Herdt and Shirley Lindenbaum, eds. Pp. 259-286. Newbury Park, CA: Sage Publications. Sibthorpe, Beverly 1992 The Social Construction of Sexual Relations as a Determinant of HIV Risk Perception and Condom Use Among Injection Drug Users Medical Anthropology Quarterly 6(3):255:270. Singer, Merrill 1992 AIDS and U.S Ethnic Minorities: The Crisis and Alternative Anthropological Responses Human Organization 51 ( 1) :89-95.

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116 Sontag, Susan 1989 AIDS and Its Metaphors. New York, Farrar, Straus and Giroux. State of Florida, Department of Health and Rehabilitative Services 1993a The Florida HIV/ AIDS Monthly Surveillance Report Number 101, January 1993. 1993b Cumulative Summary of Hillsborough AIDS Cases as of 10/ 1 93. Taylor, Christopher C. 1990 AIDS and the Pathogenesis of Metaphor In Culture and AIDS. Douglas Feldman, ed. Pp. 55-66. New York, Westport, London: Praeger. Tiblier, Kay et al. 1989 Therapeutic Issues When Working with Families of Persons with AIDS In AIDS and Families Eleanor Macklin, ed. Pp. 81-128. New York: Haworth Press Worth, Dooley 1990 Minority Women And AIDS: Culture, Race and Gender In Culture and AIDS Douglas Feldman, ed. Pp. 111 -136. New York, Westport, London: Praeger.


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