Sm. Sci. Med. Vol. 34, No. 5, pp. 571-580. 1992 Printed in Great Britain. All rights reserved

GOING

0277-9536192

PUBLIC AS AN AIDS FAMILY GAIL

S5.00

+ 0.00

Copyright 0 1992Pergamon Press plc

CAREGIVER

M. POWELL-COPE and MARIE ANNETTE BROWN

Community Health Care Systems, Mail Stop SM-24, School of Nursing, University of Washington, Seattle, WA 98195, U.S.A. Abstract-Images of AIDS invoke fears of contagion, disability and formidable death, and moral overtones directed toward drug use, sexuality and sexual identity and freedom. Responses to these images are both private and public, and have profound consequences for individuals whose lives have been touched by the disease, both the person with AIDS and the family caregiver. The purpose of this paper is to analyze in detail ‘going public,’ one category of a substantive theory of AIDS family caregiving. This category was developed from a grounded theory study of 53 AIDS family members who were asked to describe their experiences as an AIDS family caregiver during an indepth interview. Data were content analyzed using constant comparative analysis. Going public referred to how AIDS family caregivers let others know that they were caring for a PWA. Specifically, going public entailed selecting appropriate persons and audiences to tell, formulating approaches to communicating information, and considering the risks and benefits of the possible choices. The description of going public as an AIDS family caregiver details the assertiveness involved in political action and social change, contrasted with the isolation and secrecy involved in maintaining relationships with others under the condition of a stigmatizing illness. Data revealed a particular emphasis on the phenomenon of ‘guilt by association’. Because of their close relationship to a person with AIDS, caregivers were obligated to share the stigma of AIDS and were likewise discredited. Findings from our study emphasize the tremendous personal suffering experienced by caregivers which was associated with AIDS stigma in the form of rejection, loss of friends and harassment. Data also revealed the strong commitment of many caregivers to social activism which ranged from participating in educational efforts to marching in demonstrations. The rationale for the apparent increased activism among AIDS family caregivers compared to other groups of caregivers is explored. Going public highlights both the personal suffering and social manifestations of AIDS, significant issues to consider in planning health services for the second decade of the AIDS epidemic. Key w&r-AIDS,

family caregiving, health care stigma

INTRODUCfION AIDS has been labeled the most controversial disease in modem history. Fears of contagion, disability and formidable death are mixed with moral overtones directed toward drug use, sexuality, and sexual identity and freedom. These responses to AIDS are both private and public, and have profound consequences for individuals and communities touched by the disease. This paper provides a detailed analysis of ‘going public’, one category from a grounded theory study of AIDS family caregiving. In this context family includes family of origin and family of choice. ‘Going public’ referred to how AIDS family caregivers let others know they were caring for a Person with AIDS (PWA). Going public highlights both the persona1 suffering and social manifestations of AIDS, significant issues to consider in planning health services for the second decade of the AIDS epidemic. Little is known about family or lay caregivers who provide significant amounts of care to Persons wQh AIDS (PWAs). Data from other caregiving populations suggest that AIDS caregivers may serve sirni lar functions in assisting the ill person to remain-at home longer, avoid hospitalizations, and maintain well-being [I]. Empirical findings from studies on AIDS family caregivers suggest that they experience

significant amounts of stress (21, particularly with respect to isolation from families and friends due to AIDS-related stigma [3-51. Greif and Porembski [5] found that significant others of PWAs (friends, lovers, parents and siblings) experienced difficulties in coping due to conflicts between the PWA and his family of origin, and rejection of the PWA by the family of origin. In a study of lovers only, Geis, Fuller and Rush [3] found that significant stress derived from isolation from usual support networks related to AIDS stigma. Similar findings were reported by Giacquinta [4] who studied a variety of types of family members. In our study, ‘going public’ was one category of a grounded theory describing the overall experience of family caregiving [6]. Uncertainty was identified as the basic social psychological problem of AIDS family caregiving and was evident as caregivers made decisions about how and when to go public.

METHODS Data collection and analysis was guided by grounded theory methodology [7-91. Standard methods of constant comparative analysis were employed to derive codes and categories and to determine their relationships. Theoretical sampling was accomplished by selecting respondents based on the 571

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GAIL M. POWELL-COPE

and

need to collect more data to examine categories and their relationships. and to ensure representativeness in the category. Theoretical saturation determined the discontinuation of new data collection and was accomplished after interviewing 53 participants, Validity and reliability were addressed systematically using the criteria outlined by Sandelowski [IO], and Lincoln and Guba [I I]: (1) truth value, (2) applicability, (3) consistency and (4) neutrality. Techniques used to insure validity and reliability were debriefing by peers, triangulation, prolonged engagement with the data, persistent observation, reflexive journals and member checks. During the final phases of analysis focus groups of study alumni, family caregivers who did not participate in the study, and professionals and community volunteers working in the area of AIDS and family caregiving were asked to review and critique findings. The initial analysis of ‘going public’ was criticized by caregivers during validation for its negative tone and heavy focus on concealment and stigma. Modifications of the theoretical presentation were made through research team consensus based on feedback obtained during the validation process. Procedures Participants were recruited from a variety of AIDS community sources, including clinics, support groups, a caregiver course, volunteer organizations, and a community newspaper. After consent was obtained, participants were asked: “What has it been like for you living with and taking care of someone with AIDS?” Relevant probes were used to gain further insight into issues raised, such as, “How have others responded to you, knowing that you are a family caregiver of a person with AIDS?” Interviews were conducted in either one or two sessions, lasted a mean of 4.5 hr, and yielded over 200 hr of interview data. Sample The sample consisted of 53 family caregivers of people with AIDS. Basic demographic characteristics are summarized in Table 1. In addition, 77% lived in the same household with the PWA and 60% of the households also included other individuals such as the caregiver’s partner or child, or housemates. In almost half (47%) of the families, the PWA had been diagnosed within the past I2 months. Eighty-four percent of the caregivers knew the PWA before the diagnosis of AIDS. The families in the study represented a wide variety of caregiving roles such as friends, partners. spouses, and parents. Parents included those of both adult and minor children with HIV/AIDS. The sample contained few ethnic minorities and a large number of caregivers ofgay PWAs, thus reflecting the demographics of AIDS in the geographical area where the study was conducted (121. However, compared to family caregivers of people with other health problems, this sample was

MARIE

ANNETTE

BROWS

younger with a greater proportion of men, fewer spouses and fewer members from families of origin. THE SOCIAL

CONTEXT

OF AIDS IN THE L’.S.A.

Three features of the social context of AIDS in the U.S.A. are particularly relevant to AIDS family caregivers’ experiences of going public. First, going public is embedded in a society that distinguishes between a private and public self. The American value of individualism and the constitutional right to privacy encourage people to keep the personal private and to solve personal problems with self-reliance. Because of the cultural emphasis on privacy, deception and secrecy are considered acceptable strategies to protect oneself from other’s judgements. At the same time, Americans value participation in public spheres of life, especially white males [ 131. The American legacy of democracy validates public assertion of one’s beliefs as a social right, a responsibility, and for some, a moral imperative. Therefore, the conflicting values of privacy and public participation were particularly problematic for AIDS family caregivers. They found it extremely difficult to maintain public participation in the politics of AIDS and at the same time conceal personal involvement with AIDS. A second important aspect of the social context of AIDS in the United States is the cultural emphasis on mass media. Mass media provide a public vehicle for

Table

I. Sample characteristics

(n = 53)

Relationshiu to PWA Friends (k&ding former lovers) Partner/lover in gay relationships Parents Partner/spouse in heterosexual relationship Siblings Other biological family

43% 32% 13% 6% 4% 4%

Gender Male Female

64% 36%

Sexual preference Gay or bisexual Heterosexual

68% 32%

Race Caucasian People of color

92% a%

Age

Range M can

Education College degree or higher Less than college degree Employment Full time Part time Family income Less than $10,000 5 I o.ooo-520,000 520.00&530.000 530,000-540,000 Over 540,000

2245 36 43% 57%

50%

19%

Ia % 4 I% 16% 16% 9%

Going public willing self-disclosure as well as unwanted disclosure of the private self, which makes individuals vulnerable to negative consequences. In addition, the media provide a vehicle for effecting social change. However, the power of the media to effect change regarding AIDS is limited by a cultural ambivalence and apprehension about addressing private matters, such as sex, publicly. Participants in this study understood the power of the media. Some caregivers actively sought out the media to promote AIDS awareness and AIDS prevention, and were not concerned about unwanted disclosure. In contrast, others used the media but were cautious about how much of themselves they divulged. A third important feature of the social environment that governs going public is the conflict between the professed value of individual freedom and pervasive homophobia. Individual freedom of choice and lifestyle are held up as inalienable rights for all citizens, yet gays and lesbians are denied access to housing, employment, and marriage based on their sexual orientation. The study reported here was conducted during the years when the federal govemment was criticized for its homophobia which resulted in silence and slow response to AIDS. This lethargy sparked AIDS activism, led mainly by gay men, in a society that was generally phobic about AIDS and homosexuality. Although most caregivers in this study recognized the effects of homophobia on the politics of AIDS, only a minority could be considered political activists. While the setting for this research reflects all of these contextual issues, study findings also mirror the specific characteristics of Seattle, Washington. This city, known for its liberal politics but lack of radicalism, responded relatively early and comprehensively to the AIDS epidemic, particularly in proportion to the incidence of AIDS. Because Seattle has a large gay community with visible community resources, it is also a city where gays and lesbians can be more open about their sexual orientation than in many other communities. Furthermore, laws are in place that to protect individuals from discrimination based the diagnosis of HIV infection. RESULTS

In a general sense, going public is a process that describes how individuals move towards telling others private and very important information about themselves. Specific to this study, going public referred to how AIDS family caregivers let others know that they were caring for a PWA. Letting others know about their involvement with AIDS applied t&a range of relationships from the most intimate to the most public situations and involved intensLemotions such as embarrassment, pain, confusion, anger 6% conversely, pride and satisfaction. Generally, underlying motives involved in going public were to protect oneself and the PWA from negative consequences

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and to create social change. Specifically, going public entailed selecting appropriate persons and audiences to tell, formulating approaches to communicating information, and considering the risks and benefits of the possible choices. Living with secrecy

The reality of becoming an AIDS family caregiver is that one starts out alone. From this point on telling others, however few or many, about their involvement in AIDS is inevitable. Early on, many study participants opted for a stance defined by living with secrecy. For example, the father of a young gay man who had recently returned home to begin a new life after years of prostitution and drug use recounted his initial secrecy: I didn’t tell nobody for about three months. The only one I told was my supervisor on my job. Before that I had this pressure on me so bad that I couldn’t talk to nobody.

The data revealed considerable suffering resulting from shame, fear of disclosure and repercussions, and ridicule and negative judgement from others. One partner living with secrecy was angry and upset about the ridicule expressed by those close to her who did not realize she was an AIDS family caregiver: It’s people’s ignorance of AIDS and their cruelty with the disease that makes it really hard. I mean, you listen to jokes all the time about AIDS. Like at our Thanksgiving dinner, everybody had a different joke about AIDS.

How long caregivers lived with secrecy was influenced by the extent of their previous openness about factors associated with AIDS, such as sexual orientation and drug use. For example, one mother caregiver who previously had discussed her son’s sexual preference with others did not remain secretive for long. Another factor influencing living with secrecy was the caregiver’s and PWA’s previous level of community involvement. In particular, individuals without ties to the gay community where AIDS is more accepted, were more likely to continue AIDS caregiving in secrecy. For example, one heterosexual woman cared for her husband for an entire year and concealed the information from everyone, including her parents, siblings and children. Another caregiver who initially suffered negative consequences in telling people became more isolated over time: . . . but I’m also a little cautious, too. I’ve been let down so much by so many people that I don’t let everybody know how caregiving is affecting me. I keep lots of myself to myself. In living with secrecy caregivers often attempted to ‘pass’ [14], that is, act as if they were not associated with AIDS while in reality remaining integrally involved in AIDS caregiving. They used deception and dishonesty in order to protect themselves or the PWA from negative consequences. Often caregivers pretended that they were not AIDS caregivers, or they were very careful to protect the information that a family member had AIDS. Specific strategies used to

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GAIL M. POWELL-COPEand MARIEANNETTEBROWN

pass that were reported by study participants included making excuses, lying, witholding information, changing jobs or places of residence, and avoiding certain social situations and family gatherings. Many caregivers used several strategies to protect themselves. One partner caregiver whose need for secrecy resulted in social isolation described his strategy of very limited disclosure: The people that are probably

closest to me know that there has been problems. . I haven’t gone much further than that and asking a lot of . . they haven’t been demanding questions and have accepted my very brief explanation, but you stay away from people.

The data revealed that passing often resulted in a web of selective disclosure filled with lies, partial truths and excuses. The set of complex ruses often became a source of great emotional turmoil. Often caregivers feared saying the wrong thing, or contradicting what they had previously said. For example, one wife whose husband refused to tell their teenage children that he had AIDS felt the constant burden of lying and fear of discovery when talking to her children. She was angry about how this dishonesty hindered her closeness with her children and felt frustrated about the considerable energy required to remember and juggle information. She constantly worried about what she said to whom as she struggled to create plausible and consistent excuses:

I have to keep some of his schedule a secret. We see a lot of doctors and sometimes he’ll have to have a lot of tests . it’s covering up with the kids where I have to ask myself, ‘What did I just tell them last week?’ Try to remember the same excuse.

Balancing secrecy and assertiveness The majority of our study participants lived with neither complete secrecy nor complete openness. Instead, they used varying amounts of secrecy and openness in telling others about their involvement with AIDS. A major finding in this study was the predominance of staging information as a critical strategy caregivers employed to go public. Staging information involved carefully selecting certain amounts and types of information in order to slowly paint a more complete picture of their situation. One longtime lover, an office worker, became very adept at staging information: There’s been days where I have taken off from work and I’ve told people there, not being specific, that I have a sick person living with me. I refer to him as my nephew, that he

is ill and he does have a terminal illness. Staging information initially involved (I) simply talking about a sick friend or family member (regardless of the actual relationship), (2) elebomting that the person was very ill and had cancer or &as dying, and (3) finally sharing the explicit diagnosis of AIDS, their relationship to the PWA, and the extent of their caregiving role. One caregiver used staging with his parents when they pressured him to come home for the holidays:

My parents know I have a friend who is sick. I was supposed to come back east on some work just about a year ago, and I had to cancel that trip. They were very disappointed, and I had to give them a reason why. I told them I had a sick friend . and also that this sick friend of mine now lives in the house and that he needed a place to live. They don’t know that he’s still sick. They think that he just had meningitis. So it’s an uncomfortable

set of ruses.

In addition, the data revealed that the most significant influence on the timing and staging of disclosure was the PWA’s health status. As one partner pointed out: Now it’s coming to the point where [I have to start telling people] . like, I’ve gotten out of work to take him to some of these tests and things like this, and of course, they want to know what’s wrong and it’s a whole bunch of lies. He’s lost enough weight now that everybody has been saying, ‘Oh, gosh, he’s just looking so good’ because everybody over 50 is over weight and wants to lose weight and here he is getting nice and trim. The PWA’s escalating illness often forced increasing assertiveness; as the PWA became more ill, the caregiver tended to disclose more information about the situation to more people. Going public was more common following the diagnosis of AIDS, during a hospitalization, or during a significant illness episode. One mother who was very sad and tearful about her son’s deteriorating condition related: When I started on this job I didn’t just say, ‘Oh, hi, how are you. know? I didn’t tell them because I then as I saw Bob getting sick I going on.

tell them because I don’t My son has AIDS,’ you didn’t see the need to, but told them something was

Living assertively A small proportion of study participants chose to ignore AIDS stigma, to live openly in their AIDS caregiving role and to work toward social change. One woman, whose life partner was a hemophiliac with AIDS, asserted her involvement with AIDS in every dimension of her life. Together they had made numerous media appearances and felt great pride in their community education efforts and anger about others’ secrecy: My story is an open book. I don’t feel like I have anything to hide from anybody about this subject. There is such a conspiracy of silence. I hate that.

Many assertive caregivers resisted AIDS-related stigma by becoming social activists committed to changing social oppression of those affected by AIDS and AIDS stigma. They worked toward changing social, economic, and political structures (including social policies, health care policies, and cultural beliefs) related to HIV infection. Caregivers’ activism was motiviated by a desire to create social change, to demonstrate self-pride, and to affirm a belief that they were capable of effecting changes in societal responses to those with HIV infection. Some caregivers committed to change routinely monitored the media for the accuracy of AIDS-related information, wrote letters

Going public

to authors

to dispel myths and correct inaccurate statements, or appeared on television to promote AIDS education and prevention. One man became enraged by a newspaper column by Dr Ruth Westheimer which was entitled, ‘Never, Never, Never Have Sex with a Person with AIDS.’ This caregiver wrote a response that was subsequently published. The caregiver said he expressed righteous anger in his letter: We are a gay couple . . Your statement that no one should have sex with an AIDS patient seems wrong to us. Sexual practices like mutual masturbation and frottage have never transmitted AIDS to anyone.You should tell this to people. AIDS patients are human and need sexual expression: People who love AIDS patients may want to express that love physically. This goes for gays and heterosexuals equally. ‘Having sex’ is not necessarily having intimate contact with body fluids: I should not have to point that out to a sex expert.

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and just slammed it on the floor and walked out. It got to me that much, guys joking, and they looked at me like I was crazy. I just picked up the table and dropped it on the floor and turned around and walked out because it got to me. I got tired of hearing about queers and AIDS. They were making jokes about people with AIDS, and I really got tired of that, you know, but they don’t know why I dropped the table. I never told them. Caregivers feared that information about their AIDS caregiver role wouId be used to discredit them among family members, friends, neighbors, work colleagues and acquaintances, forcing them to live with secrecy. Caregivers reported negative personal consequences of going public including harassment, rejection, and loss of jobs, friends and housing. One caregiver, a supermarket employee, chose secrecy at work to safeguard his job: I was told by my boss about seven or eight months ago that if I told any of the employees that Rob has AIDS I would

be fired. Balancing

risks and benefits

of going public

AIDS family caregivers considered both persona1 and social risks and benefits of going public. For example, job discrimination was a personal risk of going public whereas protecting the community from the spread of AIDS was a social benefit. Caregivers differed in the relative emphasis they placed on personal vs social consequences of going public. In general, those who lived with secrecy tended to give more weight to personal consequences and those who lived assertively tended to emphasize social consequences. Personal risks. Living with secrecy was one response to caring for a loved one with a stigmatizing illness and was motivated by the need to protect oneself and the PWA from negative judgement and harm. For AIDS caregivers, the personal risks of going public, e.g. shame, disgrace, or failure, were the result of AIDS stigma. This phenomenon, ‘guilt by association,’ was a major theme in the data. PWAs were stigmatized because they had AIDS; caregivers were ‘tainted’ because they associated with someone with AIDS. One caregiver expressed her anger about this stigma: People feel like AIDS is a dirty disease and people associate it with dirty people no matter what. Both PWAs and their family caregivers were called into question because of society’s discomfort with sexuality (particularly homosexuality), substance abuse, life-threatening illness, death and contagious disease. Both the PWA and the caregiver were targets of AIDS phobia, pejorative judgements, and discrimination that resulted in considerable suffering. One father described his pain and anger about his c‘oworkers’ public expressions of disparagement and scorn towards those with AIDS: 4_? When I found out my son had AIDS I was at work one day. Like 1 said, no one knows my son’s got AIDS but two people, and there were a bunch of guys joking about it, about AIDS, you know, and I got so pissed I took a table

Regardless of the caregiver’s role relationship to the PWA, most experienced the stigma related to the extreme fears and irrational beliefs held by others about the contagion of HIV. Caregivers were surprised that, despite a decade of public education, others remain uninformed about AIDS. One caregiver discussed the burden of others’ fears related to contagion: There are a lot of people you can go to, but they would have very strong feelings . . . and they’d be very fearful of you getting the disease. I just couldn’t handle anybody else’s judgement, anybody else’s anger, anybody else’s fear. In addition to fear of contagion, AIDS family caregivers experienced stigma resulting from the general avoidance of death and dying common in American society. Most terminally ill patients and their families, regardless of the specific disease etiology, suffer the consequences of living in a society that does not easily acknowledge death. One gay lover discussed his frustration with how others related to him as if he too could be dying from AIDS: I could get upset about a lot of things people do. The fact that I am a partner with someone with AIDS, that they naturally assume that I am going to come down with AIDS, and that I too will die in the future, or the near future. They are looking at me like I’m this time bomb waiting to go OK. Another caregivers orientation. biological orientation association caregivers

potential risk of going public for many was inadvertent disclosure of their sexual Most caregivers, with the exception of family members, felt that their sexual was called into question because of the between AIDS and homosexuality. Gay who were less open about their sexual orientation usually were very cautious about going public, especially outside of the gay community. For example, a middle-aged teacher cared for his lover for a year and waited for subtle cues of acceptance before disclosing the situation to his supervisor at work: There’s only one person at work I have discussed this with, my boss. I had told him last summer that I was very stressed

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GAIL M. POWELL-COPE and MARIE ANNETTE BROWN

out, told him that the family was very sick and so forth. He said, ‘Who?’ which was actually more assertive, and I could have avoided that if I wanted to, but I decided to sort of go for it and I said my lover’s been very sick, and he all of a sudden started using the male pronoun. And so I just told him and he’s been pretty good about it.

Parent caregivers reported unique effects of stigma related to PWA’s intravenous drug use and sexual orientation. Often they felt guilty about not being able to prevent their child’s homosexuality or drug use, and consequently, their AIDS. They often perceived themselves failures as parents, or were accused of poor parenting by others. A middle-aged mother who received a sensitively-written letter from her son informing her about his lifestyle was devastated by the news: He was always told he was a very handsome person He would have been the very last person in the world we would ever expect to hear this from The first thing I did was to call a psychologist There was so much guilt and I wanted to learn more about the whys. The guilt was the heaviest load that 1 was carrying in the beginning [after learning he was gay] . The next questions were why, and who, and how did this happen? And

finally,

another

risk

of

going

public

was

the PWA and caregiver. When disagreements occurred, typically it was the PWA who wanted to remain secret and the caregiver who wanted to tell others in order to gain support. These disagreements about who should know were significant sources of strain on the caregiver/PWA relationship. Sometimes caregivers resentfully complied with the PWA’s preferences, as did this 45year-old wife and mother: increased

interpersonal

conflict

between

He’s stated many times that maybe the children would never have to know, so this a secret I’ve had to not give them any truth and it’s very difficult for me to live with all the lies . but he says that he can’t handle [telling them the truth] right now and he couldn’t handle losing them right now for me it would be easier if he had the ability to accept responsibility for it . and if telling people were not on my

shoulders. Other times, however, caregivers did not comply with the PWA’s wishes and selected their own course of action based on what they thought was best. Personal benefts. The major personal benefit of going public reported by study participants was gaining support and assistance from others. As time progressed and the strain of caregiving increased, caregivers required more support and the benefits of being more open became more apparent. A 38-yearold man, a truck driver, told of his success_ful attempt z to gain support at work:

I went to work one morning and I had-this on my chest and I was crying. I told him ‘I have to talk to you.‘What I have to tell you I haven’t told nobody else. My son’s got AIDS.’ And he sat across the table from and he started crying. It shocked me. and he said ‘If there is anything I can do let me know. I’m sorry. anything.’

Other personal benefits of telling others about their involvement with HIV/AIDS included increased job flexibility, sympathy, help with caregiving tasks, and acknowledgement of their caregiving role. One man expressed his appreciation for the support from his lovers’ parents and for their acknowledgement of his caregiving for their son: His parents have been real supportive. They came out to see us in May and I had met them a couple of different times. They always address their letters to us and they send me birthday letters. They are real supportive of me, and his mom has said several times that they were real glad that Rob and I were together, that Rob wasn’t having to do all this by himself. A particularly meaningful benefit for caregivers of going public was others’ acknowledgement of the contribution they were making to the PWA’s quality of life. Caregivers took pride in telling others about their success in meeting the challenges of caregiving. However, because they generally received little acknowledgement from the PWA or others for their caregiving, many were extremely appreciative of affirmation, such as the positive feedback given by the researchers at the end of study interviews. One male caregiver expressed satisfaction with his nurturing abilities and pride in his advocacy skills: I have developed certain strengths and abilities in different kinds of ways that are being called into play and a number of people have said that Martin is very lucky that I have those I’m real proud of myself.

Social risks and benefirs. While virutally all caregivers discussed the personal risks and benefits of living with secrecy and living assertively, only a few spoke of risks and benefits in terms of public or social consequences. Caregivers often felt too preoccupied with caregiving demands and with personal suffering to be active in larger social issues. In addition, caregivers’ focus on the personal rather than the socio-political aspects of AIDS reflect a cultural emphasis on American individualism and on selfreliance. The social risks of remaining secretive identified by caregivers were the perpetuation of homophobia and AIDS stigma, the continued escalation of the incidence of AIDS, and inadequate health and social services. One young idealistic caregiver felt that going public about his caregiver role was a moral obligation because keeping secretive would maintain the status quo: I really think other people continue to education or change until

that deal not any

as long as AIDS remains a disease that with, then nothing changes and we can provide people treatment and care or of those kinds of things. Nothing will people say, ‘Oh, this affects me, or the guy I worked with, his lover had AIDS, or somebody I went to

school with.’ A major social benefit of going public perceived by caregivers included altering the politics surrounding AIDS by increasing public awareness. Many

Going public

caregivers actively participated in ongoing public educational projects regarding AIDS prevention in order to increase public awareness and gain public support. Realizing the complexity of attitudinal change, some caregivers particularly were determined to change the cultural norms that limit discussion related to sexual behavior and sexual orientation, thereby hindering AIDS prevention efforts. A major social benefit of going public identified by some caregivers was the creation of a sense of community. Community identification gave caregivers a sense of belonging to a group with shared values and experiences. One caregiver described the strength derived from realizing his connection with community as he participated in his first AIDS march: The people with AIDS were first, and of course lovers, too. And so it was amazing for us to be at the head of this march

[in Washington DC] to see the incredible moving applause, and I still remember this one woman with tears in her eyes . it was just this sense of, ‘We’re here and we have the support of this gigantic community.’ And even though we do not have the support of society yet, we have our community. For gay caregivers a particularly salient aspect of community identification was increased integration into the gay community. As a result, many gay caregivers experienced newfound pride in their sexual identity and membership in the gay community. Caregiving often provided the initial opportunity for ‘coming out’ as gay or for becoming more connected with the gay community. A 32-year-old lover expressed the importance of his sense of community with others that developed as a result of his caregiving experiences: I started really developing a community spirit. I was always, but not outwardly gay, and I became a lot more involved with the gay community. Since then, I’ve devoted many hours of work and now I call on the gay community. I see myself as part of the gay community now . . I have a real sense of community now.

In many cases caregivers reported that people from diverse backgrounds joined together to create an AIDS community that transcended divisions based on race, gender and sexual preference. As caregivers, particularly female heterosexuals, sought services in the AIDS community, they often developed meaning ful relationships within the gay community. A woman who had described her isolation in a suburban community also emphasized how much she cherished her friendships with gay men: [As a straight woman] I have friendships that are based on AIDS. I have gay friends. My gay friends that I have forp!d c based on AIDS are very special friendships.

Another example of diverse groups joining-toget_@r was gay and lesbian caregivers uniting into a community that embraced both. One woman emphasized the increasing cohesiveness of the homosexual community as a result of AIDS:

577

All of the stuff that used to happen between gay men and lesbians and all of the political factionalism is not dropped away but has lessened considerably.

Although many caregivers discussed a single AIDS community, it was described by some study participants as a community composed of several special interest groups. Caregivers identified subgroups, including gays and lesbians, medical and health care workers, biomedical researchers, support service volunteers, political activists, each with somewhat different agendas and priorities. Caregivers’ experiences of going public reflected differing priorities according to subgroup identification. For example, caregivers who attended support groups often encouraged each other to disclose their involvement with AIDS to others for the purpose of gaining support, taking care of themselves, or increasing authenticity in communication among family members. In contrast, caregivers who were involved in political action groups were more likely to go public for the purpose of creating social change. One consequence of the special interest subgroups within the larger AIDS community, particularly troubling to many caregivers, was that community resources that appealed to one type of caregiver often were perceived as uninviting to others. For example, services delivered and used primarily by gay men were often uncomfortable for heterosexual and parent caregivers, women, and people of color. As a result, many heterosexual caregivers, especially parents, felt extremely isolated without a sense of an AIDS community. A 38-year-old woman caring for a friend described her isolation as a heterosexual AIDS caregiver and her anger with an intolerant community: I feel a lot of distance from others. I’m a single, straight woman and live in the suburbs. You know, AIDS isn’t something that my peer group-I’m the only one dealing with AIDS, and in a way, I’m bringing up something they don’t want to deal with. And they do that by distancing from me. It’s kind of hard . There’s a part of me that wants to refuse to live the straight world of the city, and wants this suburb community to come into the 80’s.

Summary of results Overall, going public involved a complex web of decisions and interactions. Caregivers differed considerably in their levels and styles of going public. For some caregivers, going public was consistently stressful thoughout the caregiving experience. For others, it involved brief and intense challenges followed by periods of resolution. The struggles involved in going public were poignant reminders of the pain surrouding stigma, judgemental attitudes, and rejection. Living assertively as an AIDS family caregiver highlighted the strength, courage, and empowerment that many family caregivers found in supportive relationships, community identification, social activism, and community AIDS education.

578

GAIL

M. POWELL-COPE and MARIE ANNETTE BROWN

DISCUSSION

The major contribution of these findings is in the explication of a salient yet little-understood aspect of family caregiving: how individuals move towards telling others private and important information about themselves. The description of going public as an AIDS family caregiver details the assertiveness involved in political action and social change, contrasted with the isolation and secrecy involved in maintaining relationships with others under the condition of a stigmatizing illness. This description carries with it dimensions of personal and collective experiences. Sontag [15, pp. 65-661 explained the metaphorical origins of both the individual and community suffering associated with AIDS: “. . AIDS seems to foster ominous fantasies about a disease that is a marker of both individual and social vulnerabilities . , . the virus invades the body; the disease (or, in the newer version, the fear of the disease) is described as invading the whole society.” While going public in AIDS family caregiving may be relevant to other caregiver groups, it is rarely elaborated in the literature. Living assertively emphasizes the family’s engagement in political action to effect social change, an issue not typically addressed in the general family caregiving literature. This activism, which ranged from participating in educational efforts to marching in demonstrations, is notably absent from Horowitz’s [16] exhaustive literature review of family caregiving for the frail elderly and from three qualitative studies of cancer, Alzheimer’s or elderly caregivers [17-191. The gap in the literature about activism in caregiving is somewhat surprising because many of the issues identified by politically active AIDS caregivers, such as increasing the availability of investigational drugs and providing public education, extend beyond the boundaries of AIDS and are relevant to people affected by other diseases. What might account for the apparent increased activism among AIDS family caregivers compared to other groups of caregivers? The apolitical stance of many caregivers could reflect a more general lack of political awareness and involvement in American society [13]. In contrast, the increased activism of AIDS caregivers may reflect the political consciousness and expertise that evolved from the gay rights movement. Another possibility is that other caregiving groups are politically active, but these activities remain invisible. It is also possible that families affected by diseases other than AIDS may not identify a need for grassroots political action because the politics are primarily managed by professjonals and governmental bureaucracies. In contrast, from the beginning of the AIDS epidemic*_there were few professional and governmental resources-to draw upon. This lack of resources spawned grassroots AIDS organizations comprised mainly of gay men to address their pressing concerns. In summary, circum-

stances responsible for making AIDS a ‘social and political disease’ [20] include: (1) the majority of those affected belong to previously stigmatized groups [21], (2) the group initially most affected, gay men, already possessed a degree of political organization, expertise, and resources [21], and (3) the modes of transmission (sexual and drug use) raised controversial issues concerning morality and public education [20]. It is likely that these unique aspects of AIDS served as barriers to appropriate and timely responses by health care systems and governments. Therefore, few alternatives for adequate care and treatment were initially available to PWAs and family members. As a result, many turned to political activity as a way to improve health care services and to prevent further spread of the disease. Findings raise many interesting questions about the role of political action in family caregiving. Despite the unique aspects of AIDS, are there issues embedded in the politics of AIDS, and strategies used by politically active PWAs and families that could be useful to other family caregivers as well? If the assumption that other caregiver groups are less politically active than AIDS family caregivers is correct, what are the potential advantages and disadvantages for increased political activity among other caregiving groups? Could coalitions of family caregivers initiate changes to improve treatment options, to increase alternatives for treatment, and to change societal attitudes towards terminal illness, death, and dying? A major contribution of this study is the emphasis on the phenomenon of ‘guilt by association’ and the personal suffering associated with it. Guilt by association describes the stigma and discredit that significant others are obliged to share because of their close relationship to the stigmatized person [14]. In fact discredit may be understated and as Sontag [ 15, p. 251 emphasized, “The unsafe behavior that produces AIDS is judged to be more than just weakness. It is indulgence, delinquency-addictions to chemicals that are illegal and to sex as deviant.” Therefore, the stigma associated with AIDS family caregiving is not surprising given the stigma experienced by individuals infected with HIV [15, 22-241. Our findings support Goffman’s observation that the relationship between the stigmatized person and significant other 1‘. . . leads the wider society to treat both individuals in some respects as one” (141. Thus lovers, parents, sisters, brothers and friends of persons with AIDS in our study were vulnerable to the effects of stigma such as isolation, emotional turmoil and shame. The extension of stigma to significant others has been noted in the literature about AIDS family caregiving [3,4] as well as other populations of caregivers such as families of the mentally ill [25], and parents of the developmentally disabled [26]. This stigmatization can have considerable negative consequences for both individuals and families. Wahl and Harman [25] reported that a majority (56%) of family

Going public members of the mentally ill believed that families directly experience difficulties from stigma, including disrupted relationships with other family members and with the ill person, lowered self esteem, decreased willingness to acknowledge the relative’s illness, lowered acceptance by mental health professionals, and diminished ability to make and keep friends. These consequences of stigma were also apparent in our data. Findings from our study emphasize the tremendous personal suffering associated with the stigma of illness in the form of rejection, loss of friends, and harassment. Even though not reported frequently by study participants, threats to housing and employment did occur and were very painful. Furthermore, our findings explain the dynamics and the intricacies of the relational disruptions resulting from stigma. Our data suggest that stigma can have a volatile effect of polarizing individuals within families of origin, because of who does and who does not ‘buy into’ the stigma of AIDS, who accepts or rejects the PWA, and who supports and does not support the PWA. As a result of differing responses to stigma, factions between siblings, between siblings and parents, and between husbands and wives were not uncommon in our data. Stigma also creates fertile ground for disruptions in relationships between family caregivers and PWAs resulting in significant conflict. The divisiveness of these conflicts cannot be overlooked as a significant source of stress in families affected by AIDS. Living with secrecy highlights caregivers’ attempts to manage the stigma associated with a life-threatening illness and AIDS. AIDS shares sources of stigma relevant to other illnesses, such as death and dying, physical disfigurement and deterioration, and mental impairment, but may carry even greater stigma due to its reputation for leading to an extraordinarily difficult and humiliating dying process. Sontag [15, p. 381 emphasized that “The most terrifying illnesses are those perceived not just as lethal, but as dehumanizing . . .” In addition, other sources of stigma are particularly characteristic of AIDS, such as homosexuality, sexual behavior as a mode of transmission, and contagiousness. Therefore, the interactive effect of many stigma sources may be responsible for the intensity of the stigma felt by AIDS family caregivers in this study. Alternatively, since over two-thirds of this sample was gay, we speculate that the continued rejection of homosexuality as an alternative life style produced the remarkable stigma felt by these AIDS family caregivers. While our study documents the difficult challenges related to guilt by association, it also points out th_e affirming experience of political action. While stigmamanagement is often framed in secrecy and hiding, political action can be posited as an alternativei)ourseof action. Traditionally in the literature, stigma management focuses on changing oneself or one’s own behavior to alter the consequences of stigma. While this type of stigma management was common in our

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study, the politically active AIDS caregivers were particularly interested in creating supportive environments for all people affected by AIDS. With AIDS, a supportive environment would be one without stigma, pejorative judgement, blame or the need to live in secrecy, and one with open discussion about prevention and treatment. Political action directed toward changing aspects of the environment that contribute to stigma, for example the media, can also be a powerful way to ‘manage’ stigma. In the Wahl and Harman [25] study, the media was identified by family caregivers as a source of perpetuating stigma, whereas politically active AIDS caregivers in this study emphasized the power of the media to neutralize stigma. Our data document caregivers’ use of the media as a means to combat stigma and to create a more supportive environment by going public with their stories on television or in newspapers or by participating in educational efforts. It is interesting to note that reference to the health care system was absent from the picture of going public by family caregivers. While specific questions about health care providers were not included, one would expect that if they significantly influenced going public, caregivers would have acknowledged this influence. This gap raises the critical questions of whether there should be a more active role of health care providers in going public. If so, how should health care providers intervene to facilitate decision making about going public? Because this study was exploratory, specific recommendations for practice should be taken cautiously. These data suggest that going public is enormously complex and stressful for families. Therefore, it may be important for individual health care providers to provide anticipatory guidance and counselling in this area. In addition, because study participants emphasized the important role of support groups in going public, they should be an integral part of health and social services for families affected by HIV/AIDS. The clinical relevance of our findings is a greater understanding of the strategies used by family members to manage stigma. In this study, staging information was identified as a key strategy used to manage AIDS-related stigma. Staging was advantageous for caregivers because it reduced their anxiety about being ‘found out’, allowed them to obtain support from others they did not completely trust, and protected them from others’ negative reactions. These subtleties of stigma management may be useful to novice caregivers adjusting to their roles and to clinicians who guide caregivers in negotiating their social environments. In conclusion, our study emphasizes the tremendous impact of going public on the lives of AIDS family caregivers. To ignore the social identification of AIDS family caregivers as a substantive issue is to negate the significant costs borne as well as the substantial gains made by family members. This study demonstrates that although AIDS was

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GAIL M. POWELL-COPE and MARIE ANNETE BROWN

identified ten years ago, HIV-related stigma continues to exert profoundly negative personal consequences for people with AIDS and their family members. At the same time, family caregivers have also made significant positive gains by initiating social changes that influence the quality of life for persons with AIDS and their families. Acknowledgements-This study was funded in part by a Biomedical Research Support Grant from the University of Washington School of Nursing and the Psi Chapter of Sigma Theta Tau. We gratefully acknowledge the generous contribution of time from our study participants. We sincerely appreciate the substantive and methodological assistance provided by Dr Kristen Swanson, Dr Phil Bereano, Kimberly Moody and Linda Meldman. Although there is a designated first and second author, each contributed equally in the development of this paper.

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Going public as an AIDS family caregiver.

Images of AIDS invoke fears of contagion, disability and formidable death, and moral overtones directed toward drug use, sexuality and sexual identity...
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