HIV-related stigma in a sample of HIV-affected older female African American caregivers
Social Work; New York; Jan 1999;

http://www.geocities.com/

Abstract:
Older women of color increasingly act as informal caregivers for adults and children with HIV disease. Nineteen older female (mostly African American) informal caregivers of HIV-infected individuals participated in qualitative interviews to explore their experiences with HIV-related stigma.

[Headnote]
Older women of color increasingly act as informal caregivers for adults and children with HIV disease. Nineteen older female (mostly African American) in formal caregivers of HIV-infected individuals participated in qualitative interviews to explore their experiences with HIV-related stigma. Perceived and directly experienced stigma were examined in the context of disclosure of the presence of HIV disease. Overt HIV-related stigma was rarely experienced by these respondents, primarily because they had not widely disclosed the presence of HIV in the family and therefore had not given anyone the opportunity to ostracize or judge them. HIV-related stigma was internalized, so that disclosure decisions were based on their anticipation of censure. There also was evidence of associative stigma and of stigma management. The findings suggest the need for social work practitioners to increase
awareness of the needs of stigmatized, isolated HIV-affected caregivers. Practitioners should conduct aggressive outreach and strive to provide more support to this often invisible population of caregivers to HIV-infected people.
Key words: African Americans; caregivers; elderly women; HIV/AIDS; stigma

People who have HIV disease (refers to the trajectory of the illness that is caused by the retrovirus. whether symptomatic or asymptomatic; symptomatic, or end-stage HIV disease, often is referred to as AIDS) tend to experience a series of unpredictable medical, emotional, and social crises (Poindexter, 1997a); therefore, the trajectory of HIV-affected caregiving also is uncertain and often anxiety provoking (Brown & Powell-Cope, 1991, 1993; Cates, Graham, Boeglin, & Tielker, 1990; Jankowski, Videka-Sherman, & LaquidaraDickinson, 1996; Land, 1996; Lego, 1994; Lesar, Gerber, & Semmel, 1995). HIV caregiving is an especially salient issue for communities of color, women, and older people for the following reasons. HIV disease has affected children, youths, and adults in racial and ethnic minority groups disproportionately (Anderson, 1990; Brown, Mitchell, & Williams, 1992; Duh, 1991; Jenkins, 1992; Magana & Magana, 1992; Michaels & Levine, 1992, 1993; Thomas & Quinn, 1994). Therefore, when HIV-infected family members return home in the final stages of the disease, or when children who are orphaned by HIV disease need parenting, the older people who become caregivers are likely to be members of an ethnic minority group (Joslin, 1995; Lloyd, 1989). Second, as is the case with informal caregiving in general, caregivers for individuals with HIV are predominately women (Ogu Sr Wolfe, 1994). Third, many family caregivers to children, youths, and adults with HIV disease are older people, who may be especially unprepared for the burdens of providing care within the context of a highly stigmatized illness (Allers, 1990; Levine, 1993; Linsk, 1994; Muschkin & Ellis, 1993; Ory & Zablotsky, 1993). Older women of color as informal caregivers also face the multiple jeopardies of race or ethnicity, poverty, socioeconomic status, age, and gender (Minkler & Stone, 1985; Okazawa-Rey, 1994), in addition to the difficulties of HIV-related care.

Because HIV-affected older caregivers are understood insufficiently by researchers (Brabant,1994) and by service providers and advocates in the fields of aging and HIV (Linsk, 1994; Lloyd, 1989), research and service programs are needed to understand and address their needs better (Gutheil & Chichin,1991; McKinlay, Skinner, Riley, & Zablotsky, 1993; Mellins & Ehrhardt,1994). The project discussed in this article explored the perceptions and experiences of 19 older female HIV-affected caregivers of color regarding a cluster of relevant variables concerning HIV-related stigma. The purpose of the research was to understand better the effect of anticipated, perceived, and actual discrimination on HIV caregiving.

Background on Stigma

Stigma, defined as "undesired differentness" or "spoiled identity," describes a negative, moral, or judgmental definition of a person or social situation, often connected to discrediting, disgrace, blame, and ascription of responsibility for the condition (Goffman, 1959, 1963). Stigma is part of a cultural system of shared meanings, typologies, or schemas that allow people to interpret the world, control behavior, respond to differences, explain danger or inferiority, or express disapproval (Coleman, 1986; Goffman, 1963; Jones et al., 1984; Page, 1984).

A wide variety of situations, diseases, and social issues include stigma as a concern. Examples of topics seen as stigmatized social problems include criminal behavior (DeVinney & Thomas, 1980), poverty (Alex, 1995), illiteracy (Beder, 1991), receiving public aid (Mills, 1996; Moffitt, 1983; Ranney & Kushman, 1987), suicide (Solomon, 1982), and using alcohol (Rather, 1991) or crack cocaine (Fullilove, Lown, & Fullilove, 1992). A variety of physical or medical states also can be stigmatized, such as involuntary childlessness or infertility (Miall, 1989,1994; Whiteford & Gonzalez, 1995), epilepsy (Chaplin, Floyd, & Lasso, 1993; Iphofen, 1990; Jacoby, 1994; Schneider,1988), deafness (Flexer & Wood, 1984), obesity (Robinson & Bacon, 1996), and other physical impairments (Cahill & Eggleston, 1995; Fine & Asch, 1988; Frank, 1988; Hahn, 1988; Royse & Edwards, 1989; Susman,1994). Individuals also can be stigmatized for having mental retardation (Angrosino, 1992; Birenbaum,1992; Szivos & Griffiths, 1990), being diagnosed with a mental illness (Lefley, 1989; Mechanic, McAlpine, & Rosenfield, 1994), growing old (Luken, 1987), or having a terminal illness (Epley & McCaghy, 1978). Finally, stigmas may be attached to being adopted (March, 1996), being raped (Weidner & Griffitt, 1983), being victimized by child sexual abuse (Coffey, Leitenberg, & Henning, 1996; Feiring, Taska, & Lewis, 1996; Tomlin, 1992), or having a same-gender sexual orientation (Coleman & Remafedi, 1989; Herek & Capitanio, 1996).

There are three related concepts, which comprise a set of issues to be considered in any stigmatized situation: associative stigma, internalized stigma, and stigma management. Associative stigma, which Goffman ( 1963) called "courtesy stigma," is ascribed to people who are voluntarily attached as caregivers or acquaintances to people who are stigmatized. Examples of issues that produce stigma by association include homosexuality (Neuberg, Smith, & Hoffman, 1994; Sigelman, Howell, Cornell, Cutright, & Dewey, 1991), dying (Posner, 1976), mental illness (Greenberg, Greenberg, McKee, Brown, & Griffin-Francell, 1993), mental retardation (Birenbaum, 1992), and dementia (Blum, 1991). Internalized stigma, or accepting the discrediting of one's worth conveyed by society, can occur without the experience of overt mistreatment and can lower a person's sense of self-esteem and prestige, because he or she is aware of the threat of censure and rejection (Jones et al., 1984). "Stigma management" is central to coping with carrying a stigma; that is, being aware of the real or potential negative reactions of others and attempting to minimize their effects (Jones et al., 1984; Page, 1984). The stigmatized person who strives to manage the stigma must consider the problems of concealment, disclosure, "passing" as normal, secrecy, information management, and social visibility (Goffman, 1963; Page, 1984).

HIV-Related Stigma

HIV-infected people and their caregivers experience a particular type of stigma, which Herek and Glunt (1988) labeled "AIDS-related stigma" to designate a level of discrimination and prejudice that is deeper than that experienced by individuals with other types of illnesses or social problems. HIV is perceived as a demeaning disease of marginalized groups (Baker, 1992; Cadwell, 1994; Laryea & Gien, 1993; Novick, 1997) and thus adds to the existing stigma of being marginalized. Marginilization and HIV-related stigmas together contribute to difficulty in adjustment and obtaining support (Herek & Glunt, 1988). As Land (1996) explained, one reason for the stress of HIV caregiving stems from the psychosocial context of victim blaming, ascribed low societal status, and defining HIV-affected populations as likely to experience multiple problems. HIV-related stigma has been well documented since Herek and Glunt coined the phrase nearly a decade ago. There is ample evidence of negative or punitive attitudes among the public (Borcher & Rickabaugh, 1995; Herek & Capitanio, 1992, 1993; Lang, 1991; O'Hare, Williams, & Ezoviski, 1996; St. Lawrence, Husfeldt, Kelly, Hood, & Smith, 1990) and among helping professionals such as physicians, nurses, and social workers (Denker, 1990; Eliason, 1993; Faugier & Wright, 1990; Hall, 1992; Longo, Sposs, & Locke, 1990; Marshall & O'Keefe, 1995; "Many Found Daunted by Clients with HIV," 1995; Peate, 1995; Sherer & Goldberg, 1994; Siminoff, Erlen, & Lidz, 1991; Wiener & Siegel, 1990). HIV-infected people have reported suffering the negative psychological and social effects of societal stigma (Crandall & Coleman, 1992; Lang, 1991; Laryea & Gien, 1993; Longo, Sposs, & Locke, 1990). In addition, there is evidence that children in HIV-affected families suffer from associative HIV-related stigma (Cameron, 1994; Fair, Spencer, & Wiener, 1995), as do caregiving parents of HIVinfected adults (McGinn, 1996). A recent study found through a meta-analysis of 21 studies that HIV-related stigma exceeds stigma caused by other illnesses (Crawford, 1996). In addition, as potent and real as HIV-related stigma is, there is also evidence of internalized stigma among people with HIV and their caregivers, causing them to anticipate and expect discrimination and ostracism if they disclose the presence of HIV (Crandall, 1991; Green, 1995).

HIV disclosure can result in loss of social support (Hoffman, 1996; Kadushin, 1996; Lang, 1991; Lesar, Gerber, & Semmel, 1995). The social isolation stemming from HIV-related stigma may be exacerbated for women (Semple et al., 1993; Stuntzner-Gibson, 1991), for elderly people (Solomon, 1996), and for people of color (Boyd-Franklin, Aleman, Jean-Gilles, & Lewis, 1995). Because the stigmatization of adults and children with HIV infection often extends to their caregivers, families can become isolated and find it difficult to seek or locate support (Gutheil & Chichin, 1991; Jankowski et al., 1996; Kreibick, 1995; Lesar, Gerber, & Semmel, 1995; Lippmann, James, & Frierson, 1993; Mellins & Ehrhardt, 1994; Melvin & Sherr, 1993; Ogu & Wolfe, 1994; Powell-Cope & Brown, 1992). Caregivers may respond to the HIV-related stigma and hostility of their network and society by withdrawing, ignoring their own social needs, and becoming further isolated (Perreault, Reidy, Taggart, Richard, & Savard, 1992). The lack of HIV disclosure can increase stress (McDonell, Abell, & Miller, 1991) and complicate grieving (Brown & Powell-Cope, 1993; Dane, 1991; Walker, Pomeroy, McNeil, & Franklin, 1996).

Because HIV caregivers are likely to experience direct, perceived, and associative stigma, questions regarding HIV-related discrimination and stigma were included in a larger exploratory study of the experiences of HIV-affected older caregivers of color. This article addresses three research questions: ( 1 ) What is the evidence of HIV-related stigma in this population of HIV-affected caregivers? (2) How did the experience of HIV-related stigma affect these caregivers? and (3) What are the connections between HIV-related disclosure, HIV-related support, and HIV-related stigma?

Method

Nineteen older female African American HIVaffected caregivers in the Chicago area participated from January to August 1996 in one-time semistructured qualitative interviews regarding their perceptions of and experiences with HIVrelated stigma (during the interviews, the researchers referred to the respondents by their last names and titles [for example, Mrs. Johnson]; respondents were assigned first names [pseudonyms] in the transcripts and tables for the purpose of making them more real to the researchers and readers). These caregivers were recruited primarily through fliers distributed in HIV-related social and health agencies. Most often, a family member with HIV or a case manager would inform the caregiver of the study. Initial inclusion criteria were over age 50, self-defined as being not white, and currently caring for adult children who were infected with HIV or minor children who were infected with HIV or affected by the HIV status of their family members. Because participant recruitment proved to be very difficult, the initial guidelines were eased as the study progressed. The age criterion was expanded, because we received calls from four women in their middle to late forties who self-identified as older and qualified in other ways. Researchers also decided to broaden the definition of care recipient after receiving calls from three eager respondents who were caring for individuals who were not their children or grandchildren. Most of the caregivers were providing care at the time; however, five had cared for a person with HIV who had died within the previous year, and one had cared for someone who had died two years before.

Interviews were open ended and used a checklist as a guide to ensure content comparability. Examples of checklist questions related to stigma are: "What concerns have you had about HIV?" "What concerns have others had about HIV?" "How has HIV affected your family?" "Whom have you told about your loved ones' HIV status? Why or why not?" and "Tell me a story about how you or your family members have had negative responses or have experienced discrimination about AIDS."

All interviews were audiotaped with the written consent of the respondents and transcribed verbatim (in transcribing the interviews and in reproducing the remarks of the respondents, the researchers tried to be true to the words, phrases, styles, and pronunciations of the interviewees to represent them accurately, to convey the tone and affect of their statements, and to preserve the elegance of their expression). Field notes, observations, researcher comments, methodological difficulties and successes, and a summary of the respondent's story were all added to the document containing the transcription of the tape (as per Lofland & Lofland, 1995). This entire interview record was included in the coding and data analysis. Coding refers to the researchers' inserting labels, which would later be used for computer word searches and sorts, into the interview document. Words and phrases that served as summaries of meaning were placed in brackets at the beginning of the phrase, sentence, or paragraph that made up the unit of analysis. The first stage codes were simply descriptive (for example, "family rejected them after disclosure"); the second stage codes were categorical (for example, "disclosure-family"); and the third stage drew conclusions about the respondents' experiences as a whole (for example, "disclosure with stigma"). Additional details concerning recruitment, content of interviews, sampling method, and sample delineation appear elsewhere (Linsk & Poindexter, in press; Poindexter, 1997b).

Respondents

The researchers were funded to locate and study older caregivers of color who were providing care for family members infected with HIV. We sought respondents who were beginning to confront their own aging process and therefore aimed for people over 50. As previously discussed, the convenience sampling method and the difficulty in recruitment led to a sample with some heterogeneity; however, all met basic study criteria.

Seventeen of the women were African American, one was Mexican, and one was Filipino. Ages ranged from 44 to 80, with a mean age of 61. Length of time in HIV caregiving ranged from three months to 11 years. Thirteen respondents were caring for or had been caring for their HIV-infected adult children, six of whom had died. Four interviewees were taking care of an HIV-infected minor grandchild; in each of these cases, the mother of the minor was HIV infected as well or had died from AIDS. The remaining two interviewees were caring for other adults: one for a male lover and another for her sister (for further information about the context of and reasons for their caregiving, see Linsk & Poindexter, in press; Poindexter, 1997b; Poindexter, Linsk, & Warner, in press).

Findings on HIV-Related Stigma and Disclosure

Whether the respondents had stories to tell concerning HIV-related discrimination depended on whether they had disclosed the presence of HIV in the family. There was a continuum ranging from no HIV disclosure to full HIV disclosure. Within this disclosure continuum there were varying experiences with HIV-related stigma, ranging from no awareness of discrimination to the experience of ostracism. We noticed four categories of disclosure and stigma: ( 1 ) disclosure of HIV with the experience of HIV-related stigma, (2) no HIV disclosure and thus no HIV-related stigma, (3) selective and controlled HIV disclosure because of internalized stigma and concern about associative stigma, and (4) full disclosure of HIV with no HIV-related stigma. The last three categories have been grouped as "no overt HIVrelated stigma reported." This array shows where these 19 respondents were placed in this disclosure and stigma interaction (Table 1).

Disclosure with Stigma

Five caregivers said that they had experienced rejection and censure from most of their family and friends after the HIV disclosure. They explained that their families abandoned them and the individuals with HIV they cared for when the diagnosis was revealed. For example, Florence commented on her family's disappearance when her daughter was very ill from AIDS complications.

My whole family got afraid.... They wouldn't even go see her. She begged them, please, Momma, tell them." Celeste said of her family: "They stopped coming over since they found out Tonya had it [HIV].

One grandmother had been rejected completely by her own family because of the HIV diagnoses of her daughter, brother, and granddaughter:

My daughter, my only surviving daughter told me she was sick and tired of me.... It's annoying how I had to remove a lot of things, like family pictures. I had to take all that stuff down.... There's too much pain. Too much pain, you know (Daisy).

Alma told of a confrontation with a family member:

I had some words with my brother. Because he went to see him in the hospital. And he came back and told me that he told Michael he shouldn't be kissing people.... I told him, I said, well, if you 'fraid a him, don't go 'round him. Don't go out there telling him not to touch, I said, don't go 'round him.

Jen was disgusted with how some members of her family treated the person with HIV. She attributed their behavior to irrational fear of HIV transmission:

You know, like my niece with that jar shit. He got to drink out a jar when he come there. Or they don't want to hug him, like it can rub off. Or they don't want to go in the bathroom after he been in....That's silliness. You know?

Three of the respondents who lost family contact and support said that they also lost friends because of HIV disclosure. For example, Daisy said, "I don't have friends, family. None of them want to have anything to do with us. . . . Because of her illness." Jen, caring for her lover, was angry that her female friends had been especially harsh when she told them of his diagnosis and wondered why she was staying with him:

If you're my friend, if I like it, you supposed to love it. If you're really my friend.... You know, so I don't listen to what people say anymore.

Celeste explained that she did not have anything in common with her former friends: I don't feel the same. Because I know that they'll be going on with their lives, and none of my friends' children have HIV. And they sit around talking about people with AIDS.

Little or No Disclosure, No Stigma

Because of the well-documented existence of HIV-related stigma and its adverse effect on HIV caregivers, researchers anticipated that these respondents would have incidents of HIV-related discrimination to discuss. It was surprising that this was seldom the case: 14 reported that they had not directly experienced the effects of HIV-related stigma. One of them, to be discussed in more detail, was caring for someone who had gone public about her HIV status. The other 13 gave the following reasons for their lack of direct experience with HIVrelated discrimination: They had told no one about HIV being in the family, had been selective and careful about whom they did tell, or had not been forthcoming about the HIV diagnosis. This is indicative of stigma management-they had not given anyone the chance to mistreat them because of HIV. This is demonstrated by the following interchange:

Interviewer: So, you haven't had, you haven't felt a lot of negativity from other people.

Nell: Uh-huh. Because they don't know. They just think she got rheumatory arthritis. Two respondents had disclosed the HIV diagnosis to no one at all and thus had no stigma to report. Eleven of the respondents had disclosed the HIV diagnosis, but had made careful decisions about whom to tell and had experienced little or no discrimination as a result. Many of these caregiving women were aware of and afraid of the possible effects of stigma and explained their reluctance to disclose as an unwillingness to face censure or moral judgment. The following comments illustrate this: 'Cause, see, they don't understand.... You know, they think, because she in my home, that I might have AIDS (Nell).

'Cause I, you know, I didn't want them to tell me, oh, these peoples will come out and tell you, no, God didn't mean for you to be like that, God don't like that, and all that. And I don't want to hear that. I don't want to hear that.... 'Cause people feel so differently when it comes to things like that, you know. They don't want a see it my way, you know. And I just kept it to myself (Faye).

The one instance in this sample of going public is worthy of notice, because it is an exception in a mostly closeted sample. Carol cared for her 44-year-old grandniece Nora. Carol reported that Nora approached her with a desire to help other women through public disclosure about her HIV status. Although Carol did not herself make a decision to go public, she understood, admired, and supported the desire of her care recipient to do so. Carol reported the following about Nora's decision:

It was surprising to her to see so many black women were still, they weren't coming out [about having HIV]. So, somebody asked her to appear on TV. And she called me. She says, "How would it feel if I go public?" I said, "Public, how?" She said, "Momma, there's so many women out there, especially black women, that are not aware of what's out there for them, and they're hiding it.... If I can go on TV and let them know I've lived with this a couple years, that'll help a lot of them.... Do you have a problem with this?" I said, "No." . . . And I was never more proud of her at that moment.... And that started it. But I think she's done a tremendous job.

This caregiver could not describe any ramifications that resulted from stigma. She stated that, although acquaintances commented on Nora's media appearances, Othey never spoke about the reason for these television interviews: "People call me to say `Nora's on TV!', but they never say she has HIV. They never say that." Going public can mitigate the effects of stigma (Jones et al., 1984), and perhaps a person does not notice or care about public opinion as much when a secret is not being protected. It is also possible that the members of Carol's social network did not feel that they had permission to say "HIV" to Carol until she broached the subject herself.

Respondents' Awareness of HIV-Related Stigma

Whether they had themselves experienced the effects of HIV stigma, most interviewees were cognizant of its existence and did not approve of how people with HIV are sometimes regarded or treated. Thirteen of the women commented on HIV-related stigma in some way, noticing how neighbors, friends, families, churches, schools, society, and service systems chastise or shun people with HIV and their family members. When discussing the negative attitudes and actions that people with HIV often encounter, several respondents spoke with empathy for HIV-infected individuals and had a view that AIDS was no different from other diseases or a sense that people with HIV were often treated unjustly. Examples follow for each of these aspects:

The comments of caregivers who showed empathy and awareness of rejection follow.

'Cause there's no situation in the world like this. 'Cause when you turn your back on somebody for havin' it, and you're supposed to love 'em, that destroys people (Jen).

There are so many hundreds and thousands of peoples that don't even want their children around, even if their children die, they won't even come to the funeral.... They won't do nothin' for them. 'Cause he had a friend, and his friend said, the boy's mother. . . wouldn't even come to visit him.... And when I see people that have AIDS, you know . . . it's just something that's kinda hurtin', you know. To see that they runnin' around out there by theyself and they got nobody. Relatives or nobody want to be with 'em (Faye).

Some people have AIDS don't have anybody to love them.... And then she had a friend that has AIDS . . . that he said his daughter and them, they don't come and see him, because they found out he got AIDS (Sheryl).

There are so many cases of how parents treat their children. I had a young lady. . . [tell me] how her mother wouldn't even let her children go near.... She told this outta her own mouth, with tears running down her cheeks. How they treated her (Florence).

I went through this with my cousin. Some of his friends, you know . . . they were mean. And he was so sad.... And so, after that, he changed his phone number. His pastor came to see him, but his friends stopped. So, I just knew (Belle).

Caregivers whose sentiments were that AIDS is no different from other diseases said the following:

I just look at it like another sickness. Another illness. Just like cancer, leukemia, whatever. That's the way I look at it. Because it's just another illness. Something you can't help. Something you didn't ask to have. But it's there. That's the way I look on it (Lacy).

It hurts me so bad. I've met people whose families won't accept them.... If you're sick, you're sick (Carol).

Caregivers who responded with a sense of justice explained:

I don't see nothin' to be ashamed of. And to be against somebody.... I can't see nobody mistreatin' somebody, whether you got AIDS or whether you haven't. I just don't see it. We don't know what we're gonna leave here with (Faye).

I don't shy nobody. You never know what you're gonna have. It's best to always treat people right (Lacy).

Two respondents were vocal early in their interviews about their confidentiality and disclosure concerns. In one instance, before the interviewer could present the consent form, the respondent asked if the conversation would remain confidential. When Belle was told about the consent and confidentiality procedures, she responded that you can never be too careful where HIV was concerned, and said, "I don't know, that's just me, I didn't want it exposed, you know." As the researcher was introducing the study to Anna by explaining that the purpose of the interview was to gather information from older people who were caring for family members with AIDS, Anna quickly motioned for silence and whispered, "We don't use that word." After the interviewer verified that it was the word "AIDS" that was objectionable, Anna explained that there was a family member downstairs and that no one in the family knew what her ill son's diagnosis was. Later in the interview she said about the stigma of the word "AIDS": "It's a terrible word to hear, as you know."

Other Indicators of HIV Disclosure-Stigma Interaction

Several other observations generated by this research are indicative of the influence of HIVrelated stigma in the lives of the caregivers: hiding the nature of the illness, reports of HIVinfected adult care recipients attempting to avoid or postpone disclosure, not telling anyone in church, their own past prejudice against individuals with HIV and their families, and intense desire to participate in the study as a way to lessen their isolation.

Hiding the Diagnosis

The literature on stigma management refers to attempts to "pass" as normal. For HIV-affected families passing entails ascribing the family member's illness to some other cause. Six of the respondents handled the wish to avoid stigma and censure by hiding the diagnosis from neighbors and friends and, in one case, from family. Three of them said it was cancer. Other "diagnoses" given were tuberculosis and pneumonia, rheumatoid arthritis, and leukemia. Two of them expressed some regret or defensiveness at having hidden the nature of the disease.

None of the four caregivers for HIV-infected minor children had disclosed the child's status to other children in the school or neighborhood, although the teacher and principal had been told. Similarly, none of the four gl andparent caregivers told the HIV-infected child of the diagnosis, in an effort to protect the children from feeling stigmatized.

Reluctance of Person with HIV to Disclose

Twelve of the caregivers shared stories about how adult HIV-infected familyI members were afraid to disclose to them and to others. The reasons for this hesitancy, as perceived by the caregivers, fell into two broad categories: ( 1) fear of rejection, ridicule, or bad treatment (six individuals) and (2) desire on the part of the care recipient to protect the family or caregiver (two people). Four of these respondents were not specific about the motivations of the person with HIV; they simply knew that disclosure of diagnosis was unwanted. Three of the caregivers spoke about their decisions to disclose to close friends or family members even though they were asked by the HIV-positive adult not to share the diagnosis with anyone; the reason for the disclosure was to garner emotional support. As Dorothy explained, "I couldn't carry it by myself. It was too deadly.... I told them. I need to share too, you know."

Lack of Disclosure in Churches

Although most stated clearly how important church participation and spirituality was for them (Poindexter, 1997b; Poindexter, Linsk, & Warner, in press), respondents varied in their disclosure patterns to churches. Eleven of those who attended church had disclosed to no one in their churches, including the pastor. Two had told only the pastor, and two had told the pastor and a few church members. Two had gone public in their churches, but with differing responses-one noticed no ramifications, and one was disappointed that none of the church members visited her daughter when she was in the hospital and nursing home. These findings coincide with the conclusions of BoydFranklin et al. (1995) regarding African Americans finding strength in their church involvement but not sharing the HIV diagnosis. The stated reasons for not disclosing to churches were because the presence of HIV was considered by the caregiver or care recipient to be a private matter, the caregiver did not feel the need for the congregation's support, or because the respondent feared the ramifications of disclosure.

Respondents' Own Previous Prejudice

Other evidence for the presence of HIV-related stigma came from three respondents who spoke introspectively and honestly about their own biases in the past against people with HIV. They spoke of how having it in their families had changed their perspectives completely. Many spoke of their regret at their initial intolerance and judgmental attitudes; one respondent felt that God was punishing her for her old attitudes by giving her two family members with HIV.

Research Participation as a Means to Lessen Isolation

The research experience itself illuminated the dynamic of HIV-related stigma in the lives of caregivers in two ways: participants did not come forward readily, but when they did they were extremely anxious to share their stories. The isolation of these caregivers and limited opportunities for emotional and social support were evident in the way that several of the respondents seemed to feel compelled to connect with the research project and tell their stories. For example, although confidentiality was of concern to most of them, the majority of them were so eager to be heard that they started talking in depth before hearing about the details of the project or reviewing or signing the consent for participation and taping. Interviewers frequently had to interrupt the narrative flow to insist on getting a signature on the consent form. The four respondents in their forties either exaggerated their ages upward or declined to tell us their ages over the telephone; they all had the fliers that announced the eligibility as age 50 or over. There seemed to be a strong desire to be heard, possibly out of a need to pass on the care recipients' legacy and to bear witness to the unique struggles and special relationships. As Florence said, "I want the world to know about it. Can you, would you see to that?"

Summary

Most individuals in this sample did not experience HIV-related stigma, a result that was counter to what the researchers expected to find. Only five reported ostracism from family; three of those felt that they also lost contact with friends because of the disclosure of HIV. Although most respondents did not report the experience of overt HIV-related stigma, its influence was felt. Thirteen of 19 individuals carefully chose whether to disclose and whom they would tell about the presence of HIV; this was done primarily because they were afraid of the ramifications of the telling. They either told no one or told only a few trusted people. Clearly, the prospect of HIV-related stigma, stemming from either moral judgment or fear of transmission, was significant for these caregivers, and they managed disclosure accordingly. These caregivers were attuned acutely to HIV-related stigma and experienced some isolation or rejection because of this phenomenon.

Discussion

Data from this study support the existence of AIDS-related stigma as a deeper level of perceived, anticipated, and experienced discrimination. For example given the choice of acknowledging their family members' illness as "AIDS" or another stigmatized condition like "cancer," several ofthese caregivers choose the label that they determined to be the lesser of two evils. Although the researchers were surprised at the lack of overt discrimination experienced by these HIV-affected caregivers, this finding is explained by the fact that most of the participants had not disclosed the diagnosis. The dynamic interaction of fear of stigma and reticence to disclose form a self-limited cycle: Disclosure of HIV must precede being the target of overt HIV-related stigma, yet it is often the fear of stigma that precludes disclosure. Because of the anticipation of HIV-related stigma, most respondents did not widely disclose the HIV diagnosis, if at all. Consequently, they could neither experience overt HIV-related discrimination nor receive support that acknowledged their struggles as HIV-affected caregivers. Therefore, because of lack of HIV disclosure as a result of fear of HIV-related stigma, not only was overt discrimination regarding HIV avoided, but their social and emotional support for their HIV caregiving also was reduced. They were protected from stigma, but at the cost of being further isolated.

The findings of this study are related to associative stigma, internalized stigma, and stigma management. The caregivers had taken on associative HIV stigma and were highly aware of its possible ramifications, even though they themselves were not HIV infected. The respondents had internalized the presence of HIV-related stigma in society to the extent that they governed their own disclosure decisions based on their anticipation of discrimination. They managed the stigma by managing HIV disclosure, supporting Powell-Cope and Brown's (1992) findings in an earlier qualitative study of HIVaffected caregivers.

Because of unexpected difficulties with sample development, the researchers concluded that potential participants were not readily open to talking to strangers and that agency personnel who serve HIVinfected people were possibly protective of the caregivers. If there had not been stringent guarantees of confidentiality, it is likely that the recruitment process would have been longer and more arduous. Difficulty with recruitment of participants has implications for further research efforts and is another indicator of HIV-related stigma. Older HIVaffected caregivers of color in metropolitan areas evidently are not rare-they are hidden.

Future research must further contrast the experience of having HIV or being associated with someone who has HIV with the experience of other conditions. In addition, because HIVrelated stigma was first labeled in 1988, explorations of how HIV-related stigma has or has not changed over the past decade are necessary. It is also vital to begin to examine the impact of multiple stigmas on the population of caregivers who may be struggling simultaneously with classism, sexism, ageism, racism, homophobia, and HIV-related stigma. It was evident in this sample that some of the individuals with HIV had asked their caregivers not to disclose their HIV diagnosis; therefore, research is needed on how much of the lack of caregiver disclosure about HIV is the result of the fear of HIV-stigma on the part of the HIV-infected person.

Other issues for future projects include how HIV-affected caregivers weigh and evaluate HIV disclosure decisions, why some caregivers fear HIV disclosure, and how they internalize HIV-related stigma. In addition, given earlier indications that HIV disclosure may be more problematic for elderly people than for younger groups (Solomon, 1996) and more difficult for families of color than for white families (Baker, 1992; Boyd-Franklin et al., 1995; Brown et al., 1992; Gant & Ostrow, 1995; Icard, Schilling, ElBassel, & Young, 1992), these assertions need to be tested by comparing the stigma management strategies of older caregivers of color with younger caregivers and white caregivers. This study did not compare the sample of older female African American caregivers of people with HIV with any other group (for example, younger, male, or white caregivers). Future projects should include other groups for comparisons.

This research also raised questions regarding what may allow an individual or family to go public. There is little insight about this in the literature-only one article on AIDS caregivers going public was found (Powell-Cope & Brown, 1992). Future studies should explore how people with HIV and their caregivers are affected when energy is no longer spent on maintaining secrecy and managing stigma.

We agree with Levy ( 1993) that for clients who are stigmatized for any reason, assistance with stigma management can be offered as part of social work services. This is particularly vital for social workers who serve people with HIV and their associates. Practitioners can help their HIV-affected clients control information disclosure, make decisions about whom to tell, positively adjust or reframe their views of their medical and social status, develop communication skills to attempt to enhance the empathy of others, and appropriately confront those who persecute them (Levy, 1993).

In addition, social workers in health care and social services settings should be more cognizant of the hidden army of older women who are providing personal care and emotional support to children, youths, and adults with HIV. The caregivers in this sample were reluctant to come forward but were eager to share their stories and ask for assistance when they were given a chance to talk. But practitioners in HIV service organizations are far more likely to meet individuals with HIV infection than to meet their caregivers. Therefore, social workers in the HIV field should ask HIV-infected clients about who is caring for them, assess the service needs of the informal caregivers, offer aggressive outreach to the caregivers, tailor support groups and other programs to caregivers, and make support more accessible and relevant. Social workers who serve elderly people should strive to provide an environment that is safe enough for older people to disclose the presence of HIV in the home or family and should be prepared to provide services or refer them to appropriate support.

Conclusion

Facing this growing pandemic, the current political climate regarding public assistance, and the subsequent burden on informal support providers, social workers need more information about how to support the older caregivers who are providing so much of the personal care for people with HIV. Because the literature has paid limited attention to the emerging topic of the older caregivers of family members with HIV, most of the program planning for them is being guided by practice wisdom and anecdotal evidence. Although these sources are useful, a broader perspective drawn from systematic analyses of caregivers' opinions is needed.

The stigmatized status that has been ascribed to people with HIV in our society over the past 15 years has serious implications, such as discrimination, difficulty in obtaining care, and lack of social support. The most important implication of this study of HIV-related stigma, therefore, is that major societal and structural shifts are required so that HIV can be brought "out of the closet." There is an interaction between sexism, ageism, racism, classism, homophobia, and HIV stigma that produces a potent form of oppression and that heightens the fear, uncertainty, grieving, and confusion of older caregivers of color. It is a tragedy that these caregivers and their HIV-positive loved ones often live in terror of disclosure and, thus, do not gain access to informal and formal support because of this fear.

A social work response will continue to be needed urgently. HIV disease, sadly, will be a concern for many decades. The profession must assist society in changing its treatment of and attitudes toward people with HIV and their caregivers. As Gilmore and Somerville (1994) suggested, our society must overcome the "us versus them" orientation and the metaphors of scapegoating that characterize HIV-related stigma, fear, and discrimination. And society must realize that we are all HIV-affected and are all essentially living with AIDS. Social workers must continue to be on the forefront of education of individuals, systems, and the public to eliminate pervasive HIV stigma.

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[Author note]
Cynthia Cannon Poindexter, PhD, is assistant professor, School of Social Work, Boston University, 264 Bay State Road, Boston, MA 02215; e-mail: ccp@bu.edu. Nathan L. Linsk, PhD, is associate professor and principal investigator of the Midwest AIDS Training and Education Center, Jane Addams College of Social Work, University of Illinois at Chicago. This research was funded by the Center for Health Interventions with Minority Elderly (CHIME) at the School of Public Health, University of Illinois at Chicago, through the National Institute on Aging (Grant no. HHS-AG 12042-03).
Original manuscript received July 24, 1997 Final revision received January 20, 1998 Accepted May 9, 1998

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