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The Impact of Stigma on the Self-Care Behaviors of HIV-Positive Gay Men Striving for Normalcy
The Impact of Stigma on the Self-Care Behaviors of HIV-Positive Gay Men Striving for Normalcy Chris Chenard, PhD, NP
Since the beginning of the AIDS epidemic in 1981, persons diagnosed with HIV have been the target of stigma. This is particularly significant for HIV-positive gay men who are additionally stigmatized because of negative societal views of homosexuality. The purpose of this grounded theory study was to examine the impact of stigma on the self-care behaviors of HIV-positive gay men. A theoretical sample of 20 HIV-positive gay men participated in this study—15 individual interviews and a focus group with 5 men. These men responded to HIV/AIDS stigma by using various stigma management strategies. Striving for normalcy emerged as the central theme. Participants saw HIV status disclosure as the main route to an affirming social support system and ultimately as a way to resolve any incongruence between self-view and reflected appraisals. Clinical implications, limitations, and suggestions for future research are discussed. Key words: stigma, HIV/AIDS stigma, HIV-positive gay men
In the United States, persons infected with HIV have been the target of stigma since the first cases of AIDS were identified in 1981. Press accounts and anecdotal reports from the first decade of the epidemic provide numerous examples of persons with HIV/AIDS (PWHA) being evicted from their homes, fired from their jobs, and rejected by their families, friends, and neighbors because of the stigma associated with HIV/AIDS (Herek, 1999). After more than
two decades of public education messages, clarification of transmission risks, and efforts to dispel pervasive misperceptions about HIV/AIDS contagion, a significant minority of the public continues to express negative attitudes toward PWHA (Herek, Capitanio, & Widaman, 2002). Negative reactions to several socially unacceptable characteristics ascribed to PWHA, such as homosexuality, promiscuity, and illicit drug use (Herek, 1999; Herek & Capitanio, 1999) lie at the root of HIV/AIDS stigma. These negative reactions became entrenched soon after the first cases of AIDS were reported in communities of gay/bisexual men and injection drug users, and they have continued to play a significant role in how PWHA experience the illness (Alonzo & Reynolds, 1995). HIV-positive gay men are particularly affected by HIV/AIDS stigma because they are viewed as blameworthy for having brought the illness onto themselves by engaging in socially unacceptable sexual behaviors (Devine, Plant, & Harrison, 1999; Herek & Capitanio, 1999). Most of the research on HIV/AIDS stigma in the last 20 years has focused on the attitudes of uninfected persons toward PWHA, the role of stigma in HIV/AIDS-related laws and health care policies, interventions to increase tolerance, and understanding why HIV/AIDS is so highly stigmatized (Burris, 1999; Herek, 1999; Parker & Aggleton, 2003). The Chris Chenard, PhD, NP, is a full-time clinician in a Ryan White Title III HIV/AIDS primary care program in Portland, ME
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 3, May/June 2007, 23-32 doi:10.1016/j.jana.2007.03.005 Copyright © 2007 Association of Nurses in AIDS Care
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literature examining how PWHA cope with stigma and its impact on their health, quality of life, and self-care behaviors is limited. The few studies that focus on how HIV-positive gay men respond to stigma are descriptive and offer little theoretical explanation of how HIV-positive gay men come to make self-care decisions in response to the forces of stigma. The aim of this grounded theory analysis was to explain how the consequences of stigma influenced their self-care decisions and behaviors.
Background Stigma (from the Greek word meaning to stick or to pierce) is a socially constructed concept that identifies a person or social group as deviant from some norm, ideal, or expectation. Stigmatized persons are viewed negatively for having violated certain rules or for possessing traits that are negative, feared, or socially devalued. American sociologist Erving Goffman (1963) described stigma as “an attribute that is deeply discrediting” whereby those who are stigmatized become “reduced in our minds from a whole and usual person to a tainted, discounted one” (p. 3). Stigma separates the “normals” in society from those with an “undesired differentness” (p. 5). The negative attributes assigned to stigmatized persons eventually become generally applied to a particular group, further marginalizing them as social outcasts. To protect themselves from the shame, embarrassment, blame, and social rejection engendered by stigma, stigmatized persons continuously struggle with the decision of whether to conceal or disclose their stigmatizing attributes (Goffman, 1963). For HIV-positive gay men, concealing their HIV-positive status and/or finding ways to hide the visible manifestations of the illness are among the most commonly reported responses to HIV/AIDS stigma (Alonzo & Reynolds, 1995; Bennett, 1990; Lewis, 1999; Weitz, 1990). Whereas concealing or hiding HIV-positive status may logically be the first-choice strategy for self-protection, concealment requires the continuous management of the stigmatizing information and carries a heavy emotional burden (Holt et al., 1998; Siegel & Krauss, 1991). As an alternative to concealment, HIV-positive gay men also use other
stigma management strategies. For example, men may use selective disclosure by incrementally disclosing their status to a select group of trusted allies over time, or they may use preemptive or open disclosure, which is a more proactive stigma response. Whereas reactive strategies such as hiding or concealment of HIV status are used to avoid or minimize the negative effects of stigma, proactive strategies such as preemptive disclosure of status directly confronts social norms and may represent greater selfacceptance (Siegel, Lune, & Meyer, 1998; Weitz, 1990). This stigma management continuum offers a useful way to describe and classify a range of stigmarelated behaviors and provides a basis to further examine how HIV-positive gay men respond to stigma. Acknowledging that a range of stigma management strategies exists, this grounded theory study proposed an explanation of how HIV-positive gay men make decisions about their self-care in response to stigma and provided a theoretical perspective for this important decision-making process.
Sample and Methods Grounded theory was the qualitative methodology used to conduct this study. Using the methods outlined by Strauss and Corbin (1998), theoretical sampling was used to recruit 20 HIV-positive gay men who volunteered to participate. The participants were recruited through posters and flyers distributed at local AIDS service organizations (ASOs), medical clinics, and support networks for gay men. Information on the posters and flyers briefly stated the nature and purpose of the study and encouraged interested participants to contact the researcher. The median age of the participants was 44 (range, 26 to 62 years). A total of 14 (70%) of the men were over 30. To be eligible for the study, participants had to be HIVpositive for at least 1 year. A total of 17 (85%) of the men in the study had been diagnosed HIV-positive for at least 5 years. Of the 20 men, 15 participated in individual semistructured interviews, which were audio recorded and transcribed verbatim for analysis. After the first five interviews were analyzed, a focus group discussion with 5 additional HIV-positive gay men generated more data. The focus group was facilitated by
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the researcher and was not audio recorded. Detailed notes and verbatim quotations were written by the researcher during the discussion, and all data were verified with participants. In addition to providing new data thorough an open discussion and sharing of different perspectives on the research topic, the focus group also provided an alternative method to make comparisons, identify variations, and verify or challenge the study’s early results (Strauss & Corbin, 1998). Participants were asked to talk about how they were stigmatized for being HIV-positive and to describe the manner in which stigma played a role in their self-care decisions and behaviors. For the purpose of this study, self-care was defined as any independent, self-determined behavior that had a direct or indirect impact on physical or mental health, such as health maintenance, health promotion, or disease prevention behaviors (primary or secondary); self-treatment behaviors; adherence to prescribed or recommended treatment interventions; and any behaviors that mitigate negative health sequelae or those that enhance health status (Dean, 1981; Levin & Idler, 1983). Data elicited from the interviews and focus group discussion were analyzed, coded, and categorized. Relevant properties and dimensions were continually compared with all previous data to identify relationships and generate relevant themes and concepts. Data collection and analysis continued until no new categories, themes or concepts were identified, a method termed theoretical saturation (Strauss & Corbin, 1998). At this point, “striving for normalcy” had emerged as the central category, representing an integration of all the data.
Results The 20 HIV-positive gay men who participated in this study readily gave examples of how they had been stigmatized for being HIV-positive, and they were clearly able to differentiate gay-related stigma from HIV/AIDS stigma. Whereas gay stigma was still present in their lives to some degree, these men felt that society had become much more accepting of sexual minorities. As the participants described their experiences, it became apparent that the stigma asso-
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ciated with being HIV-positive represented a much greater stigma burden. One man’s comments captured this point. I mean, what’s the big deal about being gay nowadays? Back thirty years ago, I wasn’t so open about it. But at this point, I couldn’t care less who knows that I’m gay. There’s nothing to it. Thank God we’ve evolved as far as we have on that level. But as far as HIV, no matter how healthy I am, I still think of myself as a poisoned animal. As exemplified in the above statement, a common source of HIV/AIDS stigma for these men was contamination— being seen by others as dangerous, dirty, or “poisoned” or as having “tainted blood.” Other sources of HIV/AIDS stigma included being treated like they were dying rather than as persons living with a chronic and manageable medical condition, being seen as unhealthy or sick, and being judged as reckless or irresponsible for becoming infected with HIV. As one man stated, “I had the feeling of rejection by my friends. Like, ‘What an idiot! You knew better than this. You knew how it happens. You still went ahead and did it. And look where you’re at!’” In response to these stigma threats, the men in this study used a number of stigma management strategies that ranged from hiding their HIV-positive status to preemptively disclosing. Hiding strategies served as a first-line defense against stigma threats and were the most commonly used. One participant explained as follows: I really kept my HIV status secret, because I was just concerned about how people would react. [I] heard horror stories and didn’t necessarily want to test those with people. I was doing what I needed to do to keep myself safe. As an alternative to hiding, these men also used selective disclosure when they perceived that certain others could be told about their HIV status and not shame, blame, harm or reject them. As one man stated, “Once I got the diagnosis, [I had] to very selectively decide who I was going to tell. And part of it was that fear of the stigma.” This strategy required continual
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assessment of certain persons or social contexts to evaluate the potential for stigma threats. One participant explained the process this way: You sort of just scan the environment. You sort of prepare yourself mentally, almost like fishing. You try to let something slip, a little comment here and there, and see how people are going to respond to it. And if you get some positive feedback, the armor sort of comes off. By selectively disclosing their status, these men limited their social contacts to other HIV-positive persons or to HIV/AIDS-related environments that assured a level of safety. As such, they were naturally drawn to persons or contexts that were mostly devoid of stigma threats. One participant summarized this finding as follows: I don’t go out socializing a lot and just haven’t expanded my social group [to] people who either aren’t living with or working with the disease. As far as coping [with stigma], I do more volunteer work, so I’m with people who work with it and deal with it on a daily basis. In addition to hiding and selectively disclosing, the men in this study used preemptive disclosure as a way to neutralize the threat of stigma and/or to eliminate the stress of hiding. In being openly candid about their status, they avoided the burden of having to guess at what the threats might be by exposing potential risks and benefits at the outset. One participant explained as follows: I think one of my coping mechanisms in and of itself was being public. It was to stem it off in the beginning. If I was going to face stigma, if I was going to see any adverse reaction, I would rather know right up front what people [and] how people were feeling. The men who used preemptive disclosure had previously experimented with selective disclosure as a prelude, thus building up a level of confidence about preemptively disclosing their HIV/AIDS status. One man who had come to be mostly open about
his status described his progression as a process of trial and error. I find myself fluctuating between being able to test the waters more often and then pulling back and needing to protect myself emotionally. But I keep trying. And when I do try, sometimes I feel really secure in it despite whatever way it plays out, and sometimes I don’t, and end up having to protect myself and pull back again. In some cases, these men preemptively disclosed their status by working or volunteering in contexts that had potential for public visibility. Several men who were usually very selective about disclosing their status on a personal level also described how they were completely open about being HIV-positive in a number of public contexts. One man provided the following example: “I fight for the people that are living with the disease and for the programs that are providing the services. I work with the state HIVprevention planning group. And I’m an advisory board member for [agency].” Men who used this type of preemptive disclosure often felt that it was a way to confront stigma threats by disavowing the shame and injustice associated with being HIV-positive. One man who was very selective in disclosing his HIV status described it this way: “I don’t like to have other people suffer from institutionalized discrimination or idiocy if they don’t have to. If I can help change that, I want to.” In listening to these men, it became clear that their stigma management strategies were not fixed; rather, they moved back and forth along the entire continuum, selecting certain strategies or combinations of strategies. Whereas some men used particular strategies more readily than others, how they responded to stigma was dependent upon the relative or contextual circumstances and their perceptions of the risk or benefit. There were numerous examples of men describing how they readily disclosed their HIV status in some contexts yet concealed it in others, depending on whether they perceived the outcome to be threatening or beneficial. The following comment from one man captured this point: It’s still a daily process, because there’s always somebody new, somebody out there to encoun-
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ter. Then you have to handle the situation as it arises. There’s no right way. There’s no wrong way. It’s an individual way. And that’s how it is with me with HIV. Another man explained how he weighed the decision to disclose: “If it threatens my livelihood, if it threatens my life, if it threatens my existence, I’m not going to give myself in to that much vulnerability to let that happen. I mean there’s trust and there’s a threat.” Striving for Normalcy All of the men described self-care activities in terms of sustaining an overall balance and equilibrium in their lives. Their self-care behaviors included activities such as maintaining emotional health, minimizing stress, getting advice from others, and seeking affirming social networks. As an example, one man explained how he took care of himself by recognizing his limitations and keeping his life in balance. I believe staying healthy with a terminal illness is to think that you’re healthy, and you continue, and you don’t let it take over you. You continue to do all that you can do. But you have to learn what your limitations are too. Because I found that I was doing too much and I got burnt out. And I got sick. So there’s an area that you have to stop. Balance out your life. When asked to explain how HIV/AIDS stigma influenced their self-care, the men described stigma management as a way to maintain normalcy. In other words, finding ways to have a normal life was the overarching goal of stigma management and it was the driving force in how the men sought to maintain overall health and well-being. One man’s comment captured the essence of this concept. I want to live a normal life. I want to be as normal as I possibly can. I have fun. I want to continue having fun, and I don’t want to be halted. I don’t want to let my mind take over my body. I think if you believe you’re sick, then you’re sick. It’s the key, to feel normal.
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Having a “normal life” meant managing the lifedisruptive consequences of HIV/AIDS without losing the balance or equilibrium that characterizes normalcy. These men not only struggled to maintain normalcy by adjusting to the challenges and limitations created by stigma, but also by changing the perspective on how being HIV-positive fit into their lives. One man stated the following: I feel personally that if you as the individual, the one who is gay or the one who has HIV, [if you] look at yourself as something abnormal, as something different, you’re setting yourself up to be different, or to feel different. For these men, normalcy represented the freedom to disclose their HIV-positive status to others without feeling judged, discounted or threatened; without disrupting ordinary social interactions; and without having people shun them, physically or emotionally. One man described what it was like to have his HIVpositive status be part of a normal social interaction as he recounted a discussion with a fellow volunteer. She and I were just having a conversation in the break room one day about some of the different organizations we were involved in. And I said, “I am HIV-positive.” She said, “I used to live in Southern California and I had some good friends that were gay, that unfortunately I lost to HIV and AIDS.” And that was it, you know. It wasn’t a big deal. And it was just two normal people having a normal conversation about aspects of their lives like any other person would. . . . There was never a fumble there. By normalizing, the men’s stigma management strategies shifted toward the preemptive end of the continuum because they gained more confidence about disclosing their status. One man explained how he began to disclose more openly because over time he realized that hiding was neither normal nor healthy. It becomes important [to disclose] because I’m not hiding. I’m not hiding. I’m just not in hiding. And that [hiding] is something that’s not only degrading, but I think it could have an effect on the HIV process itself within my body.
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This same participant went on to explain how being able to openly declare his status had started to change his view of himself. He stated, “I think that I am actually better fulfilled by saying it, just saying it.” Another man believed that by voluntarily disclosing his status he was better able to deal with the stigma of HIV/AIDS because others acted more normally toward him, which reinforced his own perceptions of normalcy: “Being open about it makes people more open around me. It makes for a more comfortable situation. I mean, just to make people comfortable with you being ill helps you deal with it also.”
not only afforded protection from stigma but fostered more open and preemptive disclosure and less hiding. As an example, one man described how he had gravitated toward an environment that was essentially stigma-free to maintain a sense of normalcy in his day-to-day life.
The Role of Social Support
Although some men had social networks that included trusted friends who were HIV-negative, most of the social support networks described by these men included a nucleus of other HIV-positive gay men. In addition to selectively disclosing only to certain persons as a form of protection from stigma, their social networks also provided a source of support, as one man noted.
As the men talked about how they took care of themselves, the role of social support emerged as an integral component of their self-care. For example, several men had become involved with ASOs, which placed them in environments that were supportive and mostly free from stigma threats. This not only buffered much of the stress brought on by stigma but also allowed them to be involved in meaningful work that further helped them preserve emotional health. As one man stated, “I think that the volunteer work has really helped me a lot in learning to live with the disease. I’m always growing from what I learn from within my volunteer work.” To maintain a sense of normalcy in their lives, it was clear that these men sought out individual people, groups, social settings, or environments in which they could feel safe and supported, and they tended to avoid persons, environments, and contexts where they felt threatened by stigma. Thus, achieving normalcy to manage stigma not only served to protect their physical and emotional safety but also helped them maintain a sense of community and find sources of social support. One man who had lived with HIV for 20 years responded to the question about how stigma had an impact on his self-care by stating, “I don’t think it has an impact on me taking care of myself by taking the meds and things. But it does in picking my support group or the people that I’m really going to count on for support.” In describing their responses to stigma, all the men in this study explained how they sought out environments or contexts in which they were affirmed as normal persons. Being in supportive environments
[My] personal life is much more around the disease now. And the people I work with and socialize with and the close friends that I’ve had for years, they know. And so I don’t have any problems with it [stigma].
I have a lot of friends, mostly people who are positive. [We] get together for cards and things. And they’re really nice and friendly and from all kinds of walks of life. But our commonality is more being positive. Even though we are all gay, it’s really being positive that has brought us together and kept us together. By finding and maintaining supportive relationships, these men minimized their exposure to stigma threats. For example, men often commented on how “normal” they felt when they attended an annual weekend retreat for PWHA. Many of them repeatedly participated in this weekend retreat because it gave them complete freedom from having to hide and a temporary reprieve from the stigma threats that otherwise pervaded their lives. One regular attendee at the weekend stated, “Everybody knows and everybody there is, except for some of the partners. And so, the pressure is off. You don’t have to worry about hiding anything. And that’s a great feeling.” Another man said, “You go around freely without any problem. I didn’t feel as guarded. I didn’t feel as withdrawn when I was there.” Because these environments were essentially devoid of stigma threats, there was no reason to conceal and the men were much
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more relaxed about their HIV-positive status. Moreover, because disclosure of status was a nonissue in such environments, the men had a sense of what it was like to feel normal. The Theoretical Model In explaining how stigma had an impact on their self-care behaviors, the men in this study continually managed stigma threats by means of various hiding and/or disclosing strategies to normalize. Hiding their HIV-positive status provided immediate self-protection and allowed them to pass for normal by concealing their socially discrediting attributes from others. By hiding they blended in, appeared normal like everyone else, and shielded themselves from stigma threats. On the other hand, disclosing their status provided a way to normalize by helping them identify persons they could trust and with whom they could align in a network of support. Finding allies who ignored the stigmatizing attributes or saw them as inconsequential enabled these men to feel and act normal. As the participants discussed the impact of stigma on their self-care, they consistently pointed to social support as an important component in how they took care of themselves. Thus it became clear that, although normalizing was the overarching goal of stigma management, self-care and social support were interrelated components in the normalization process. A theoretical model explaining how these men managed stigma and how it affected their self-care is shown in Figure 1. The model illustrates how stigma management impacts the normalization process, which includes the two key elements of self-care and social support. The men in this study responded to stigma threats by using stigma management strategies that lay along a continuum from hiding to preemptive disclosure. The main goal of stigma management was normalization, a process that included self-care and social support. Self-care behaviors included maintaining strong social support networks; therefore, these two concepts were integrated as part of the normalization process. As the model shows, striving for normalcy and stigma management strategies are interdependent components in a continuous feedback loop. Therefore, part of the model is recursive, showing how
Figure 1. Theoretical model showing the process of stigma management and self-care
normalcy, in turn, had an impact on the selection of stigma management strategies. In describing how they managed stigma, participants typically saw HIV status disclosure as a direct path to normalcy. For example, despite numerous experiences of being shamed and rejected, one man explained that his goal was to be honest about his HIV status. [I] keep working on this goal of being able to be up front all the time with everybody. That’s the goal that I have in mind—to be able to be up front and not feel like I’m hiding behind anything. You know, be up front when appropriate around me having HIV. Sort of share my experience, and not have to feel fear around rejection or what they might think. These men discovered that being more open about their status engendered more confidence about disclosure, which in turn reinforced their tendency to disclose more openly or preemptively. One man described how his process of striving for normalcy reinforced his use of more preemptive disclosure.
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I disclose my status now more normally than ever. I find that it’s easier for me to be up front about my HIV now, more so than it used to be. And I find that the response has been good. And I have no reason to stop doing that. As preemptive disclosure became the norm, these men changed the lens through which they saw themselves as HIV-positive by downplaying its discrediting significance and further reinforcing their selfperceptions as normal persons. One participant captured the reciprocal nature of status disclosure and normalcy as he described his inner struggle with this process. The stigma in my own mind exists as well, in relation to the stigma outside of my mind. And I don’t necessarily feel that external stigma growing or shrinking, but certainly the stigma in my own mind I feel growing and shrinking. . . . and me being able to handle that stigma better relates to how I feel inside. Another man explained that by disclosing his HIV status as though it were devoid of stigma, he neutralized the discrediting nature of HIV and reinforced his self-perception as a normal person. If you make the conscious effort to equate it with “I’m gay. I’m HIV-positive. I’m six foot one. I drive a purple pickup truck,” when you put it on that same level as things that you wouldn’t think twice about saying, that you wouldn’t trip up over, then you’re not stigmatizing yourself. One participant described how he openly (yet somewhat cryptically) disclosed his status by displaying a license plate on his car that said, “YES I AM.” Usually such messages are selected to make identity-affirming statements about the vehicle’s owner, for example, “BEAT NY” on the car of a Boston Red Sox fan, “NAIL MAN” on the van owned by a carpenter, or “CELLO” on the car of a classical musician. For this participant, the phrase “YES I AM” affixed to his car invited opportunity for public affirmation of his identity as gay man with AIDS.
Discussion The results in this study are consistent with previous research showing that HIV-positive gay men engage in a variety of hiding and selective disclosure strategies to protect themselves from stigma (Bennett, 1990; Lewis, 1999; Siegel & Krauss, 1991; Siegel et al., 1998; Weitz, 1990). The HIV-positive gay men in these early studies also protected themselves from stigma by seeking supportive and affirming social networks that typically included other HIV-positive and HIV-negative gay men. This study replicated a number of important results observed by Siegel et al. (1998), who showed that HIV-positive gay men used a continuum of stigma management behaviors that ranged from reactive (e.g., concealment, selective disclosure) to proactive (e.g., preemptive disclosure) and that stigma management was highly dependent on social context. The investigators further suggest that the use of more proactive strategies represented attainment of higher identity levels and perhaps greater “sense of control over one’s life” (p. 21). However, unlike the present study, their research did not directly examine the extent to which stigma management influenced adaptation to HIV/ AIDS, and the need to achieve normalcy was not identified as a unifying concept. Thus, the grounded theory developed here extends this research by further showing how stigma management is tied to self-care through the process of normalizing. Social support emerged as particularly central in this study because the participants described it as essential to taking care of themselves in response to stigma. Despite the risks of being shamed, rejected, or shunned by disclosing, there was a strong tendency to reveal their status to others. That the men in this study underscored the role of social support as a key aspect of self-care extends previous research showing that social support promotes better adaptation to the physical health symptoms of HIV/AIDS (Ashton et al., 2005), and improves overall psychological well-being (Hayes, Chauncey, & Tobey, 1990). The need to normalize as the central category in this study is consistent with previous research on chronic illness management. A number of investigators have emphasized the role of normalization as a process by which persons with chronic illness and
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their families adjust to the physical and social limitations of their illness to feel like they are valued and included in the larger social fabric (Charmaz, 1991; Miller, 2000; Strauss et al., 1984). In their extensive work on quality of life for persons with chronic illness, Strauss et al. (1984) noted that “the chief business of chronically ill persons is not just to stay alive or keep their symptoms under control, but to live as normally as possible despite the symptoms and the disease” (p. 79). Notably, Goffman (1963) also observed that persons with stigmatizing traits are fully aware of “the great rewards of being considered normal” (p. 74), and as such, they will look for ways to become accepted by normals. The men in this study described how their use of more open disclosure of HIV status gradually reinforced their self-perceptions as normal persons, a concept that other researchers have observed. For example, in their work with gay men and lesbians, Kaufman and Johnson (2004) reported that “stigmatized individuals actively seek a positive conception of self and identity, even when the identity is stigmatized” (p. 819). Their participants sought reflected appraisals that were in alignment with their own positive self-view. Interacting with others who were likely to reflect back a positive appraisal was key to the formation of a valued selfidentity. On this point, Charmaz (1987) suggests that as persons with chronic illness struggle for normal lives, they reconstruct new identities that are shaped by their illness experience. As the men in this study continued to use more open disclosure, it gradually reinforced their self-perceptions as normal persons. This shift from a stigmatized identity to a normalized illness identity allowed them to feel valued despite the conventional standards. Implications for Nursing Practice This study has several implications for nurses who work with HIV-positive gay men. Foremost is recognizing that although HIV/AIDS has become a chronic and manageable illness, health care providers should not assume that HIV-positive gay men will easily adapt to the social challenges imposed by the illness or that HIV/AIDS in the 21st century has become a destigmatized condition. Although it may appear that the stigma associated with HIV/AIDS has diminished in the last 20 years, the HIV-positive gay
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men in this study clearly described and managed a significant stigma burden. Nurses can play a key role in evaluating clients’ emotional responses to HIV/AIDS and their use of effective coping strategies. Asking the person to “tell me how you are dealing with the social pressures of being a gay man with HIV” acknowledges the presence of stigma in the client’s life and encourages him to talk about how stigma affects his ability to self-manage the illness. Given that HIV/AIDS stigma is such an integral part of the illness experience, it may be helpful to think of stigma as a symptom of HIV/AIDS. As such, strategies for managing stigma should be included when teaching clients about self-management skills. Strong and stable social support networks are important for ameliorating the untoward effects of HIV/AIDS stigma. Nurses are well-positioned to facilitate discussions with their HIV-positive gay male clients about the availability of both formal and informal social support networks and to suggest avenues for finding support. It is also important to recognize that various forms of support exist (e.g., emotional, instrumental, informational), and that not all types of social support are necessarily desirable (Hall, 1999). Therefore, emphasis should be placed on individual client needs. Psychiatric/mental health nurses who provide counseling or therapy to HIV-positive gay men can help them make informed decisions about the risks and benefits of status disclosure. HIV-positive gay men who feel heavily stigmatized and use more hiding strategies will likely experience increased stress and risk closing off access to the social support needed to facilitate adaptation to the illness. The model presented here can be used to frame a discussion with clients about how stigma management is integrally related to the goal of having a life of normalcy. Nurse therapists who use more psychodynamic approaches with their HIV-positive gay male clients may wish to draw on the concept of reflected appraisals to facilitate formation of an affirming self-identity.
Limitations and Suggestions for Future Research All of the men who participated in this study voluntarily referred themselves after hearing about it through
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ASOs, posters, pamphlets, and word of mouth. Men who felt heavily stigmatized and mostly secretive about having HIV/AIDS may not have participated because it required coming forward and disclosing their status. As such, the voices of the most stigmatized HIV-positive gay men may be missing. Because HIV/AIDS stigma can be a barrier to essential health care services (Chesney & Smith, 1999), there is a need for additional research that specifically examines the role of stigma in populations of HIV-positive gay men who are not engaged in health care and those who are the most socially isolated. In this study, it was theorized that by aligning themselves with others who were likely to reflect back a positive appraisal, the men used more open disclosure and affirmed their self-perceptions as normal persons Additional studies that explain the role of HIV/AIDS stigma on identity formation may help health care providers better understand how other HIV populations (i.e., women, children, injection drug users, racial/ethnic minorities, and heterosexual men) manage their illness. Finally, studies that use objective measures of HIV disease progression, such as CD4 count, viral load, and incidence of opportunistic infections, in PWHA who delay or avoid care because of stigma would help to quantify its impact on the health of this population.
References Alonzo, A. A., & Reynolds, N. R. (1995). Stigma, HIV and AIDS: An exploration of a stigma trajectory. Social Science & Medicine, 41, 303-315. Ashton, E., Vosvick, M., Chesney, M., Gore-Felton, L., Koopman, C., O’Shea, K., et al. (2005). Social support and maladaptive coping as predictors of the change in physical health symptoms among persons living with HIV/AIDS. AIDS Patient Care & STDs, 9, 587-598. Bennett, M. J. (1990). Stigmatization: Experiences of persons with acquired immune deficiency syndrome. Issues in Mental Health Nursing, 11, 141-154. Burris, S. (1999). Studying the legal management of HIV-related stigma. American Behavioral Scientist, 42, 1225-1239. Charmaz, K. (1987). Struggling for a self: Identity levels of the chronically ill. Research in the Sociology of Health Care, 6, 283-321. Charmaz, K. (1991). Good days, bad days; the self in chronic illness and time. New Brunswick, NJ: Rutgers University Press.
Chesney, M., & Smith, A. (1999). Critical delays in HIV testing and care: The potential role of stigma. American Behavioral Scientist, 42, 1162-1174. Dean, K. (1981). Self-care responses to illness: A selected review. Social Science & Medicine, 15A, 673-687. Devine, P. G., Plant, E. A., & Harrison, K. (1999). The problem of “us” versus “them” and AIDS stigma. American Behavioral Scientist, 42, 1208-1224. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster. Hall, V. P. (1999). The relationship between social support and health in gay men with HIV/AIDS: An integrative review. Journal of the Association of Nurses in AIDS Care, 10, 75-86. Hayes, R. B., Chauncy, S., & Tobey, L. (1990). The social support networks of gay men with AIDS. Journal of Community Psychology, 18, 374-385. Herek, G. M. (1999). AIDS and stigma. American Behavioral Scientist, 42, 1106-1116. Herek, G. M., & Capitanio, J. P. (1999). AIDS stigma and sexual prejudice. American Behavioral Scientist, 42, 1126-1143. Herek, G. M., Capitanio, J. P., & Widaman, K. F. (2002). HIV-related stigma and knowledge in the United States: Prevalence and trends, 1991-1999. American Journal of Public Health, 92, 371-377. Holt, R., Court, P., Vedhara, K., Nott, K. H., Holmes, J., & Snow, M. H. (1998). The role of disclosure in coping with HIV infection. AIDS Care, 10, 49-60. Kaufman, J. M., & Johnson, C. (2004). Stigmatized individuals and the process of identity. Sociological Quarterly, 45, 807833. Levin, L. S., & Idler, E. L. (1983). Self-care in health. Annual Review of Public Health, 4, 181-201. Lewis, J. (1999). Status passages: The experience of HIV-positive gay men. Journal of Homosexuality, 37, 87-113. Miller, J. F. (2000). Coping with chronic illness: Overcoming powerlessness (3rd ed.). Philadelphia, PA: F. A. Davis. Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science & Medicine, 57, 13-24. Siegel, K., & Krauss, B. J. (1991). Living with HIV infection: Adaptive tasks of seropositive gay men. Journal of Health and Social Behavior, 32, 17-32. Siegel, K., Lune, H., & Meyer, I. H. (1998). Stigma management among gay/bisexual men with HIV/AIDS. Qualitative Sociology, 21, 3-24. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage Publications. Strauss, A. L., Corbin, J., Fagerhaugh, S., Glaser, B. G., Maines, D., Suczek, B., et al. (1984). Chronic illness and the quality of life (2nd ed.). St. Louis: Mosby. Weitz, R. (1990). Living with the stigma of AIDS. Qualitative Sociology, 13, 23-37.
Since the beginning of the AIDS epidemic in 1981, persons diagnosed with HIV have been the target of stigma. This is particularly significant for HIV-positive gay men who are additionally stigmatized because of negative societal views of homosexuality. The purpose of this grounded theory study was to examine the impact of stigma on the self-care behaviors of HIV-positive gay men. A theoretical sample of 20 HIV-positive gay men participated in this study—15 individual interviews and a focus group with 5 men. These men responded to HIV/AIDS stigma by using various stigma management strategies. Striving for normalcy emerged as the central theme. Participants saw HIV status disclosure as the main route to an affirming social support system and ultimately as a way to resolve any incongruence between self-view and reflected appraisals. Clinical implications, limitations, and suggestions for future research are discussed. Key words: stigma, HIV/AIDS stigma, HIV-positive gay men
In the United States, persons infected with HIV have been the target of stigma since the first cases of AIDS were identified in 1981. Press accounts and anecdotal reports from the first decade of the epidemic provide numerous examples of persons with HIV/AIDS (PWHA) being evicted from their homes, fired from their jobs, and rejected by their families, friends, and neighbors because of the stigma associated with HIV/AIDS (Herek, 1999). After more than
two decades of public education messages, clarification of transmission risks, and efforts to dispel pervasive misperceptions about HIV/AIDS contagion, a significant minority of the public continues to express negative attitudes toward PWHA (Herek, Capitanio, & Widaman, 2002). Negative reactions to several socially unacceptable characteristics ascribed to PWHA, such as homosexuality, promiscuity, and illicit drug use (Herek, 1999; Herek & Capitanio, 1999) lie at the root of HIV/AIDS stigma. These negative reactions became entrenched soon after the first cases of AIDS were reported in communities of gay/bisexual men and injection drug users, and they have continued to play a significant role in how PWHA experience the illness (Alonzo & Reynolds, 1995). HIV-positive gay men are particularly affected by HIV/AIDS stigma because they are viewed as blameworthy for having brought the illness onto themselves by engaging in socially unacceptable sexual behaviors (Devine, Plant, & Harrison, 1999; Herek & Capitanio, 1999). Most of the research on HIV/AIDS stigma in the last 20 years has focused on the attitudes of uninfected persons toward PWHA, the role of stigma in HIV/AIDS-related laws and health care policies, interventions to increase tolerance, and understanding why HIV/AIDS is so highly stigmatized (Burris, 1999; Herek, 1999; Parker & Aggleton, 2003). The Chris Chenard, PhD, NP, is a full-time clinician in a Ryan White Title III HIV/AIDS primary care program in Portland, ME
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 3, May/June 2007, 23-32 doi:10.1016/j.jana.2007.03.005 Copyright © 2007 Association of Nurses in AIDS Care
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literature examining how PWHA cope with stigma and its impact on their health, quality of life, and self-care behaviors is limited. The few studies that focus on how HIV-positive gay men respond to stigma are descriptive and offer little theoretical explanation of how HIV-positive gay men come to make self-care decisions in response to the forces of stigma. The aim of this grounded theory analysis was to explain how the consequences of stigma influenced their self-care decisions and behaviors.
Background Stigma (from the Greek word meaning to stick or to pierce) is a socially constructed concept that identifies a person or social group as deviant from some norm, ideal, or expectation. Stigmatized persons are viewed negatively for having violated certain rules or for possessing traits that are negative, feared, or socially devalued. American sociologist Erving Goffman (1963) described stigma as “an attribute that is deeply discrediting” whereby those who are stigmatized become “reduced in our minds from a whole and usual person to a tainted, discounted one” (p. 3). Stigma separates the “normals” in society from those with an “undesired differentness” (p. 5). The negative attributes assigned to stigmatized persons eventually become generally applied to a particular group, further marginalizing them as social outcasts. To protect themselves from the shame, embarrassment, blame, and social rejection engendered by stigma, stigmatized persons continuously struggle with the decision of whether to conceal or disclose their stigmatizing attributes (Goffman, 1963). For HIV-positive gay men, concealing their HIV-positive status and/or finding ways to hide the visible manifestations of the illness are among the most commonly reported responses to HIV/AIDS stigma (Alonzo & Reynolds, 1995; Bennett, 1990; Lewis, 1999; Weitz, 1990). Whereas concealing or hiding HIV-positive status may logically be the first-choice strategy for self-protection, concealment requires the continuous management of the stigmatizing information and carries a heavy emotional burden (Holt et al., 1998; Siegel & Krauss, 1991). As an alternative to concealment, HIV-positive gay men also use other
stigma management strategies. For example, men may use selective disclosure by incrementally disclosing their status to a select group of trusted allies over time, or they may use preemptive or open disclosure, which is a more proactive stigma response. Whereas reactive strategies such as hiding or concealment of HIV status are used to avoid or minimize the negative effects of stigma, proactive strategies such as preemptive disclosure of status directly confronts social norms and may represent greater selfacceptance (Siegel, Lune, & Meyer, 1998; Weitz, 1990). This stigma management continuum offers a useful way to describe and classify a range of stigmarelated behaviors and provides a basis to further examine how HIV-positive gay men respond to stigma. Acknowledging that a range of stigma management strategies exists, this grounded theory study proposed an explanation of how HIV-positive gay men make decisions about their self-care in response to stigma and provided a theoretical perspective for this important decision-making process.
Sample and Methods Grounded theory was the qualitative methodology used to conduct this study. Using the methods outlined by Strauss and Corbin (1998), theoretical sampling was used to recruit 20 HIV-positive gay men who volunteered to participate. The participants were recruited through posters and flyers distributed at local AIDS service organizations (ASOs), medical clinics, and support networks for gay men. Information on the posters and flyers briefly stated the nature and purpose of the study and encouraged interested participants to contact the researcher. The median age of the participants was 44 (range, 26 to 62 years). A total of 14 (70%) of the men were over 30. To be eligible for the study, participants had to be HIVpositive for at least 1 year. A total of 17 (85%) of the men in the study had been diagnosed HIV-positive for at least 5 years. Of the 20 men, 15 participated in individual semistructured interviews, which were audio recorded and transcribed verbatim for analysis. After the first five interviews were analyzed, a focus group discussion with 5 additional HIV-positive gay men generated more data. The focus group was facilitated by
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the researcher and was not audio recorded. Detailed notes and verbatim quotations were written by the researcher during the discussion, and all data were verified with participants. In addition to providing new data thorough an open discussion and sharing of different perspectives on the research topic, the focus group also provided an alternative method to make comparisons, identify variations, and verify or challenge the study’s early results (Strauss & Corbin, 1998). Participants were asked to talk about how they were stigmatized for being HIV-positive and to describe the manner in which stigma played a role in their self-care decisions and behaviors. For the purpose of this study, self-care was defined as any independent, self-determined behavior that had a direct or indirect impact on physical or mental health, such as health maintenance, health promotion, or disease prevention behaviors (primary or secondary); self-treatment behaviors; adherence to prescribed or recommended treatment interventions; and any behaviors that mitigate negative health sequelae or those that enhance health status (Dean, 1981; Levin & Idler, 1983). Data elicited from the interviews and focus group discussion were analyzed, coded, and categorized. Relevant properties and dimensions were continually compared with all previous data to identify relationships and generate relevant themes and concepts. Data collection and analysis continued until no new categories, themes or concepts were identified, a method termed theoretical saturation (Strauss & Corbin, 1998). At this point, “striving for normalcy” had emerged as the central category, representing an integration of all the data.
Results The 20 HIV-positive gay men who participated in this study readily gave examples of how they had been stigmatized for being HIV-positive, and they were clearly able to differentiate gay-related stigma from HIV/AIDS stigma. Whereas gay stigma was still present in their lives to some degree, these men felt that society had become much more accepting of sexual minorities. As the participants described their experiences, it became apparent that the stigma asso-
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ciated with being HIV-positive represented a much greater stigma burden. One man’s comments captured this point. I mean, what’s the big deal about being gay nowadays? Back thirty years ago, I wasn’t so open about it. But at this point, I couldn’t care less who knows that I’m gay. There’s nothing to it. Thank God we’ve evolved as far as we have on that level. But as far as HIV, no matter how healthy I am, I still think of myself as a poisoned animal. As exemplified in the above statement, a common source of HIV/AIDS stigma for these men was contamination— being seen by others as dangerous, dirty, or “poisoned” or as having “tainted blood.” Other sources of HIV/AIDS stigma included being treated like they were dying rather than as persons living with a chronic and manageable medical condition, being seen as unhealthy or sick, and being judged as reckless or irresponsible for becoming infected with HIV. As one man stated, “I had the feeling of rejection by my friends. Like, ‘What an idiot! You knew better than this. You knew how it happens. You still went ahead and did it. And look where you’re at!’” In response to these stigma threats, the men in this study used a number of stigma management strategies that ranged from hiding their HIV-positive status to preemptively disclosing. Hiding strategies served as a first-line defense against stigma threats and were the most commonly used. One participant explained as follows: I really kept my HIV status secret, because I was just concerned about how people would react. [I] heard horror stories and didn’t necessarily want to test those with people. I was doing what I needed to do to keep myself safe. As an alternative to hiding, these men also used selective disclosure when they perceived that certain others could be told about their HIV status and not shame, blame, harm or reject them. As one man stated, “Once I got the diagnosis, [I had] to very selectively decide who I was going to tell. And part of it was that fear of the stigma.” This strategy required continual
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assessment of certain persons or social contexts to evaluate the potential for stigma threats. One participant explained the process this way: You sort of just scan the environment. You sort of prepare yourself mentally, almost like fishing. You try to let something slip, a little comment here and there, and see how people are going to respond to it. And if you get some positive feedback, the armor sort of comes off. By selectively disclosing their status, these men limited their social contacts to other HIV-positive persons or to HIV/AIDS-related environments that assured a level of safety. As such, they were naturally drawn to persons or contexts that were mostly devoid of stigma threats. One participant summarized this finding as follows: I don’t go out socializing a lot and just haven’t expanded my social group [to] people who either aren’t living with or working with the disease. As far as coping [with stigma], I do more volunteer work, so I’m with people who work with it and deal with it on a daily basis. In addition to hiding and selectively disclosing, the men in this study used preemptive disclosure as a way to neutralize the threat of stigma and/or to eliminate the stress of hiding. In being openly candid about their status, they avoided the burden of having to guess at what the threats might be by exposing potential risks and benefits at the outset. One participant explained as follows: I think one of my coping mechanisms in and of itself was being public. It was to stem it off in the beginning. If I was going to face stigma, if I was going to see any adverse reaction, I would rather know right up front what people [and] how people were feeling. The men who used preemptive disclosure had previously experimented with selective disclosure as a prelude, thus building up a level of confidence about preemptively disclosing their HIV/AIDS status. One man who had come to be mostly open about
his status described his progression as a process of trial and error. I find myself fluctuating between being able to test the waters more often and then pulling back and needing to protect myself emotionally. But I keep trying. And when I do try, sometimes I feel really secure in it despite whatever way it plays out, and sometimes I don’t, and end up having to protect myself and pull back again. In some cases, these men preemptively disclosed their status by working or volunteering in contexts that had potential for public visibility. Several men who were usually very selective about disclosing their status on a personal level also described how they were completely open about being HIV-positive in a number of public contexts. One man provided the following example: “I fight for the people that are living with the disease and for the programs that are providing the services. I work with the state HIVprevention planning group. And I’m an advisory board member for [agency].” Men who used this type of preemptive disclosure often felt that it was a way to confront stigma threats by disavowing the shame and injustice associated with being HIV-positive. One man who was very selective in disclosing his HIV status described it this way: “I don’t like to have other people suffer from institutionalized discrimination or idiocy if they don’t have to. If I can help change that, I want to.” In listening to these men, it became clear that their stigma management strategies were not fixed; rather, they moved back and forth along the entire continuum, selecting certain strategies or combinations of strategies. Whereas some men used particular strategies more readily than others, how they responded to stigma was dependent upon the relative or contextual circumstances and their perceptions of the risk or benefit. There were numerous examples of men describing how they readily disclosed their HIV status in some contexts yet concealed it in others, depending on whether they perceived the outcome to be threatening or beneficial. The following comment from one man captured this point: It’s still a daily process, because there’s always somebody new, somebody out there to encoun-
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ter. Then you have to handle the situation as it arises. There’s no right way. There’s no wrong way. It’s an individual way. And that’s how it is with me with HIV. Another man explained how he weighed the decision to disclose: “If it threatens my livelihood, if it threatens my life, if it threatens my existence, I’m not going to give myself in to that much vulnerability to let that happen. I mean there’s trust and there’s a threat.” Striving for Normalcy All of the men described self-care activities in terms of sustaining an overall balance and equilibrium in their lives. Their self-care behaviors included activities such as maintaining emotional health, minimizing stress, getting advice from others, and seeking affirming social networks. As an example, one man explained how he took care of himself by recognizing his limitations and keeping his life in balance. I believe staying healthy with a terminal illness is to think that you’re healthy, and you continue, and you don’t let it take over you. You continue to do all that you can do. But you have to learn what your limitations are too. Because I found that I was doing too much and I got burnt out. And I got sick. So there’s an area that you have to stop. Balance out your life. When asked to explain how HIV/AIDS stigma influenced their self-care, the men described stigma management as a way to maintain normalcy. In other words, finding ways to have a normal life was the overarching goal of stigma management and it was the driving force in how the men sought to maintain overall health and well-being. One man’s comment captured the essence of this concept. I want to live a normal life. I want to be as normal as I possibly can. I have fun. I want to continue having fun, and I don’t want to be halted. I don’t want to let my mind take over my body. I think if you believe you’re sick, then you’re sick. It’s the key, to feel normal.
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Having a “normal life” meant managing the lifedisruptive consequences of HIV/AIDS without losing the balance or equilibrium that characterizes normalcy. These men not only struggled to maintain normalcy by adjusting to the challenges and limitations created by stigma, but also by changing the perspective on how being HIV-positive fit into their lives. One man stated the following: I feel personally that if you as the individual, the one who is gay or the one who has HIV, [if you] look at yourself as something abnormal, as something different, you’re setting yourself up to be different, or to feel different. For these men, normalcy represented the freedom to disclose their HIV-positive status to others without feeling judged, discounted or threatened; without disrupting ordinary social interactions; and without having people shun them, physically or emotionally. One man described what it was like to have his HIVpositive status be part of a normal social interaction as he recounted a discussion with a fellow volunteer. She and I were just having a conversation in the break room one day about some of the different organizations we were involved in. And I said, “I am HIV-positive.” She said, “I used to live in Southern California and I had some good friends that were gay, that unfortunately I lost to HIV and AIDS.” And that was it, you know. It wasn’t a big deal. And it was just two normal people having a normal conversation about aspects of their lives like any other person would. . . . There was never a fumble there. By normalizing, the men’s stigma management strategies shifted toward the preemptive end of the continuum because they gained more confidence about disclosing their status. One man explained how he began to disclose more openly because over time he realized that hiding was neither normal nor healthy. It becomes important [to disclose] because I’m not hiding. I’m not hiding. I’m just not in hiding. And that [hiding] is something that’s not only degrading, but I think it could have an effect on the HIV process itself within my body.
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This same participant went on to explain how being able to openly declare his status had started to change his view of himself. He stated, “I think that I am actually better fulfilled by saying it, just saying it.” Another man believed that by voluntarily disclosing his status he was better able to deal with the stigma of HIV/AIDS because others acted more normally toward him, which reinforced his own perceptions of normalcy: “Being open about it makes people more open around me. It makes for a more comfortable situation. I mean, just to make people comfortable with you being ill helps you deal with it also.”
not only afforded protection from stigma but fostered more open and preemptive disclosure and less hiding. As an example, one man described how he had gravitated toward an environment that was essentially stigma-free to maintain a sense of normalcy in his day-to-day life.
The Role of Social Support
Although some men had social networks that included trusted friends who were HIV-negative, most of the social support networks described by these men included a nucleus of other HIV-positive gay men. In addition to selectively disclosing only to certain persons as a form of protection from stigma, their social networks also provided a source of support, as one man noted.
As the men talked about how they took care of themselves, the role of social support emerged as an integral component of their self-care. For example, several men had become involved with ASOs, which placed them in environments that were supportive and mostly free from stigma threats. This not only buffered much of the stress brought on by stigma but also allowed them to be involved in meaningful work that further helped them preserve emotional health. As one man stated, “I think that the volunteer work has really helped me a lot in learning to live with the disease. I’m always growing from what I learn from within my volunteer work.” To maintain a sense of normalcy in their lives, it was clear that these men sought out individual people, groups, social settings, or environments in which they could feel safe and supported, and they tended to avoid persons, environments, and contexts where they felt threatened by stigma. Thus, achieving normalcy to manage stigma not only served to protect their physical and emotional safety but also helped them maintain a sense of community and find sources of social support. One man who had lived with HIV for 20 years responded to the question about how stigma had an impact on his self-care by stating, “I don’t think it has an impact on me taking care of myself by taking the meds and things. But it does in picking my support group or the people that I’m really going to count on for support.” In describing their responses to stigma, all the men in this study explained how they sought out environments or contexts in which they were affirmed as normal persons. Being in supportive environments
[My] personal life is much more around the disease now. And the people I work with and socialize with and the close friends that I’ve had for years, they know. And so I don’t have any problems with it [stigma].
I have a lot of friends, mostly people who are positive. [We] get together for cards and things. And they’re really nice and friendly and from all kinds of walks of life. But our commonality is more being positive. Even though we are all gay, it’s really being positive that has brought us together and kept us together. By finding and maintaining supportive relationships, these men minimized their exposure to stigma threats. For example, men often commented on how “normal” they felt when they attended an annual weekend retreat for PWHA. Many of them repeatedly participated in this weekend retreat because it gave them complete freedom from having to hide and a temporary reprieve from the stigma threats that otherwise pervaded their lives. One regular attendee at the weekend stated, “Everybody knows and everybody there is, except for some of the partners. And so, the pressure is off. You don’t have to worry about hiding anything. And that’s a great feeling.” Another man said, “You go around freely without any problem. I didn’t feel as guarded. I didn’t feel as withdrawn when I was there.” Because these environments were essentially devoid of stigma threats, there was no reason to conceal and the men were much
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more relaxed about their HIV-positive status. Moreover, because disclosure of status was a nonissue in such environments, the men had a sense of what it was like to feel normal. The Theoretical Model In explaining how stigma had an impact on their self-care behaviors, the men in this study continually managed stigma threats by means of various hiding and/or disclosing strategies to normalize. Hiding their HIV-positive status provided immediate self-protection and allowed them to pass for normal by concealing their socially discrediting attributes from others. By hiding they blended in, appeared normal like everyone else, and shielded themselves from stigma threats. On the other hand, disclosing their status provided a way to normalize by helping them identify persons they could trust and with whom they could align in a network of support. Finding allies who ignored the stigmatizing attributes or saw them as inconsequential enabled these men to feel and act normal. As the participants discussed the impact of stigma on their self-care, they consistently pointed to social support as an important component in how they took care of themselves. Thus it became clear that, although normalizing was the overarching goal of stigma management, self-care and social support were interrelated components in the normalization process. A theoretical model explaining how these men managed stigma and how it affected their self-care is shown in Figure 1. The model illustrates how stigma management impacts the normalization process, which includes the two key elements of self-care and social support. The men in this study responded to stigma threats by using stigma management strategies that lay along a continuum from hiding to preemptive disclosure. The main goal of stigma management was normalization, a process that included self-care and social support. Self-care behaviors included maintaining strong social support networks; therefore, these two concepts were integrated as part of the normalization process. As the model shows, striving for normalcy and stigma management strategies are interdependent components in a continuous feedback loop. Therefore, part of the model is recursive, showing how
Figure 1. Theoretical model showing the process of stigma management and self-care
normalcy, in turn, had an impact on the selection of stigma management strategies. In describing how they managed stigma, participants typically saw HIV status disclosure as a direct path to normalcy. For example, despite numerous experiences of being shamed and rejected, one man explained that his goal was to be honest about his HIV status. [I] keep working on this goal of being able to be up front all the time with everybody. That’s the goal that I have in mind—to be able to be up front and not feel like I’m hiding behind anything. You know, be up front when appropriate around me having HIV. Sort of share my experience, and not have to feel fear around rejection or what they might think. These men discovered that being more open about their status engendered more confidence about disclosure, which in turn reinforced their tendency to disclose more openly or preemptively. One man described how his process of striving for normalcy reinforced his use of more preemptive disclosure.
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I disclose my status now more normally than ever. I find that it’s easier for me to be up front about my HIV now, more so than it used to be. And I find that the response has been good. And I have no reason to stop doing that. As preemptive disclosure became the norm, these men changed the lens through which they saw themselves as HIV-positive by downplaying its discrediting significance and further reinforcing their selfperceptions as normal persons. One participant captured the reciprocal nature of status disclosure and normalcy as he described his inner struggle with this process. The stigma in my own mind exists as well, in relation to the stigma outside of my mind. And I don’t necessarily feel that external stigma growing or shrinking, but certainly the stigma in my own mind I feel growing and shrinking. . . . and me being able to handle that stigma better relates to how I feel inside. Another man explained that by disclosing his HIV status as though it were devoid of stigma, he neutralized the discrediting nature of HIV and reinforced his self-perception as a normal person. If you make the conscious effort to equate it with “I’m gay. I’m HIV-positive. I’m six foot one. I drive a purple pickup truck,” when you put it on that same level as things that you wouldn’t think twice about saying, that you wouldn’t trip up over, then you’re not stigmatizing yourself. One participant described how he openly (yet somewhat cryptically) disclosed his status by displaying a license plate on his car that said, “YES I AM.” Usually such messages are selected to make identity-affirming statements about the vehicle’s owner, for example, “BEAT NY” on the car of a Boston Red Sox fan, “NAIL MAN” on the van owned by a carpenter, or “CELLO” on the car of a classical musician. For this participant, the phrase “YES I AM” affixed to his car invited opportunity for public affirmation of his identity as gay man with AIDS.
Discussion The results in this study are consistent with previous research showing that HIV-positive gay men engage in a variety of hiding and selective disclosure strategies to protect themselves from stigma (Bennett, 1990; Lewis, 1999; Siegel & Krauss, 1991; Siegel et al., 1998; Weitz, 1990). The HIV-positive gay men in these early studies also protected themselves from stigma by seeking supportive and affirming social networks that typically included other HIV-positive and HIV-negative gay men. This study replicated a number of important results observed by Siegel et al. (1998), who showed that HIV-positive gay men used a continuum of stigma management behaviors that ranged from reactive (e.g., concealment, selective disclosure) to proactive (e.g., preemptive disclosure) and that stigma management was highly dependent on social context. The investigators further suggest that the use of more proactive strategies represented attainment of higher identity levels and perhaps greater “sense of control over one’s life” (p. 21). However, unlike the present study, their research did not directly examine the extent to which stigma management influenced adaptation to HIV/ AIDS, and the need to achieve normalcy was not identified as a unifying concept. Thus, the grounded theory developed here extends this research by further showing how stigma management is tied to self-care through the process of normalizing. Social support emerged as particularly central in this study because the participants described it as essential to taking care of themselves in response to stigma. Despite the risks of being shamed, rejected, or shunned by disclosing, there was a strong tendency to reveal their status to others. That the men in this study underscored the role of social support as a key aspect of self-care extends previous research showing that social support promotes better adaptation to the physical health symptoms of HIV/AIDS (Ashton et al., 2005), and improves overall psychological well-being (Hayes, Chauncey, & Tobey, 1990). The need to normalize as the central category in this study is consistent with previous research on chronic illness management. A number of investigators have emphasized the role of normalization as a process by which persons with chronic illness and
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their families adjust to the physical and social limitations of their illness to feel like they are valued and included in the larger social fabric (Charmaz, 1991; Miller, 2000; Strauss et al., 1984). In their extensive work on quality of life for persons with chronic illness, Strauss et al. (1984) noted that “the chief business of chronically ill persons is not just to stay alive or keep their symptoms under control, but to live as normally as possible despite the symptoms and the disease” (p. 79). Notably, Goffman (1963) also observed that persons with stigmatizing traits are fully aware of “the great rewards of being considered normal” (p. 74), and as such, they will look for ways to become accepted by normals. The men in this study described how their use of more open disclosure of HIV status gradually reinforced their self-perceptions as normal persons, a concept that other researchers have observed. For example, in their work with gay men and lesbians, Kaufman and Johnson (2004) reported that “stigmatized individuals actively seek a positive conception of self and identity, even when the identity is stigmatized” (p. 819). Their participants sought reflected appraisals that were in alignment with their own positive self-view. Interacting with others who were likely to reflect back a positive appraisal was key to the formation of a valued selfidentity. On this point, Charmaz (1987) suggests that as persons with chronic illness struggle for normal lives, they reconstruct new identities that are shaped by their illness experience. As the men in this study continued to use more open disclosure, it gradually reinforced their self-perceptions as normal persons. This shift from a stigmatized identity to a normalized illness identity allowed them to feel valued despite the conventional standards. Implications for Nursing Practice This study has several implications for nurses who work with HIV-positive gay men. Foremost is recognizing that although HIV/AIDS has become a chronic and manageable illness, health care providers should not assume that HIV-positive gay men will easily adapt to the social challenges imposed by the illness or that HIV/AIDS in the 21st century has become a destigmatized condition. Although it may appear that the stigma associated with HIV/AIDS has diminished in the last 20 years, the HIV-positive gay
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men in this study clearly described and managed a significant stigma burden. Nurses can play a key role in evaluating clients’ emotional responses to HIV/AIDS and their use of effective coping strategies. Asking the person to “tell me how you are dealing with the social pressures of being a gay man with HIV” acknowledges the presence of stigma in the client’s life and encourages him to talk about how stigma affects his ability to self-manage the illness. Given that HIV/AIDS stigma is such an integral part of the illness experience, it may be helpful to think of stigma as a symptom of HIV/AIDS. As such, strategies for managing stigma should be included when teaching clients about self-management skills. Strong and stable social support networks are important for ameliorating the untoward effects of HIV/AIDS stigma. Nurses are well-positioned to facilitate discussions with their HIV-positive gay male clients about the availability of both formal and informal social support networks and to suggest avenues for finding support. It is also important to recognize that various forms of support exist (e.g., emotional, instrumental, informational), and that not all types of social support are necessarily desirable (Hall, 1999). Therefore, emphasis should be placed on individual client needs. Psychiatric/mental health nurses who provide counseling or therapy to HIV-positive gay men can help them make informed decisions about the risks and benefits of status disclosure. HIV-positive gay men who feel heavily stigmatized and use more hiding strategies will likely experience increased stress and risk closing off access to the social support needed to facilitate adaptation to the illness. The model presented here can be used to frame a discussion with clients about how stigma management is integrally related to the goal of having a life of normalcy. Nurse therapists who use more psychodynamic approaches with their HIV-positive gay male clients may wish to draw on the concept of reflected appraisals to facilitate formation of an affirming self-identity.
Limitations and Suggestions for Future Research All of the men who participated in this study voluntarily referred themselves after hearing about it through
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JANAC Vol. 18, No. 3, May/June 2007
ASOs, posters, pamphlets, and word of mouth. Men who felt heavily stigmatized and mostly secretive about having HIV/AIDS may not have participated because it required coming forward and disclosing their status. As such, the voices of the most stigmatized HIV-positive gay men may be missing. Because HIV/AIDS stigma can be a barrier to essential health care services (Chesney & Smith, 1999), there is a need for additional research that specifically examines the role of stigma in populations of HIV-positive gay men who are not engaged in health care and those who are the most socially isolated. In this study, it was theorized that by aligning themselves with others who were likely to reflect back a positive appraisal, the men used more open disclosure and affirmed their self-perceptions as normal persons Additional studies that explain the role of HIV/AIDS stigma on identity formation may help health care providers better understand how other HIV populations (i.e., women, children, injection drug users, racial/ethnic minorities, and heterosexual men) manage their illness. Finally, studies that use objective measures of HIV disease progression, such as CD4 count, viral load, and incidence of opportunistic infections, in PWHA who delay or avoid care because of stigma would help to quantify its impact on the health of this population.
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