AIDS Education and Prevention, 27(1), 58–71, 2015 © 2015 The Guilford Press HIV STIGMA FOR MSM JEFFRIES ET AL.
HIV STIGMA EXPERIENCED BY YOUNG MEN WHO HAVE SEX WITH MEN (MSM) LIVING WITH HIV INFECTION William L. Jeffries IV, Ebony Symone Townsend, Deborah J. Gelaude, Elizabeth A. Torrone, Mari Gasiorowicz, and Jeanne Bertolli
Stigma can compromise the health of persons living with HIV. Although HIV is increasingly affecting young men who have sex with men (MSM), little is known about their experiences with HIV stigma. We used narrative data to examine HIV stigma experienced by young MSM living with HIV. Data came from 28 qualitative interviews with young MSM. We used inductive content analysis to identify themes across these interviews. Participants commonly discussed negative perceptions and treatment of persons living with HIV. Stigma could result in nondisclosure of HIV status, internalized stigma, and avoidance of HIV-related things. Some men discussed strategies that might combat stigma. Findings suggest that HIV stigma might challenge young MSM’s health by undermining health-conducive resources (e.g., social support) and contributing to HIV vulnerability. Interventions that counteract HIV stigma may help to create environments that promote well-being among young MSM living with HIV.
William L. Jeffries IV, PhD, MPH, MA, Ebony Symone Townsend, BS, BA, Deborah J. Gelaude, MA, and Jeanne Bertolli, PhD, MPH, are affiliated with the Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia. Elizabeth A. Torrone, PhD MSPH, is affiliated with the Division of STD Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia. Mari Gasiorowicz, MA, is affiliated with the Division of Public Health, Wisconsin Department of Health Services, Madison, Wisconsin. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The authors received no financial support for the research, authorship, and/or publication of this article. The authors are grateful for the contributions of the following individuals: Christopher Bering, Jackie Grayson, Neil Hoxie, Karen Johnson, Wendy Schell, Casey Schumann, Jim Stodola, James Vergeront, Anthony Wade (Wisconsin Division of Public Health); Bevan Baker, Paul Biedrzycki, Earl Blair, Sandra Mattson, Emerald Mills, Otilio Oyervides, Daphne Prater, Irmine Reitl, Deidre Simms, Michael Starks, Karin Tyler, Vanessa Vann, Helen White (City of Milwaukee Health Department); Megan Corey, John Fangman, Dawn Perkins (AIDS Resource Center of Wisconsin); Kathy Donovan, Jose Salazar, Maria Toscano (Sixteenth Street Community Health Center); Julie Bock, Johhny King (Milwaukee LGBT Community Center); Brenda Coley, Gary Hollander (Diverse and Resilient, Inc.); D. Cal Ham, Donna Hubbard McCree, Thomas A. Peterman, David Purcell, Travis Sanchez, Pilgrim S. Spikes, Jr. (Centers for Disease Control and Prevention); and Al Heck. Address correspondence to Dr. William L. Jeffries IV, Centers for Disease Control and Prevention, 1600 Clifton Rd., MS E37, Atlanta, GA 30333. E-mail: [email protected]
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Stigma occurs when relatively powerful social groups devalue marginalized groups because of perceptions that the latter possess socially unbecoming characteristics (Goffman, 1963). Researchers have conceptualized stigma with respect to the actions of stigmatized persons as well as individuals who perpetrate stigma. Enacted stigma encompasses discriminatory actions and prejudicial attitudes that stigmatized persons experience in their interactions with individuals and social institutions (Scrambler, 2009). Perceived stigma refers to the fear and shameful feelings that marginalized persons anticipate at the thought of others treating them negatively (Scrambler, 2009). Stigmatized persons can also internalize stigma by believing that they are to blame for either their plights or others’ negative treatment of them (Goffman, 1963). Stigma is a formidable public health challenge because it dehumanizes groups that disproportionately suffer health problems and simultaneously promotes negative attitudes that inhibit public responses to these problems (Maman et al., 2009). Stigma related to HIV infection is particularly challenging for persons living with HIV in the United States. In a 2004 study, 45% of U.S. adults reported believing that “a lot” of prejudice and discrimination exists against HIV-infected people (Kaiser Family Foundation, 2004). In more recent studies—despite the lack of national-level data—persons living with HIV have commonly reported experiencing shame (Bairan et al., 2007), judgment (Courtenay-Quirk, Wolitski, Parsons, & Gómez, 2006), and discriminatory treatment like forced housing displacement (Rao, Kekwaletswe, Hosek, Martinez, & Rodriguez, 2007) because of their HIV status. Such experiences are common among individuals from communities that are disproportionately affected by HIV. In one study, for example, many HIV-infected men who had sex with men (MSM) reported perceiving the gay community’s discrimination against (61%) and judgment toward (36%) MSM living with HIV infection (Courtenay-Quirk et al., 2006). Moreover, HIV-infected black Americans report greater concern with experiencing HIV-related discrimination than HIV-infected white Americans (Rao, Pryor, Gaddist, & Mayer, 2008). HIV stigma can negatively affect the well-being of persons living with HIV and those who are at risk for HIV. Stigma may socially isolate HIV-infected persons (Courtenay-Quirk et al., 2006) and it can inhibit them from acquiring social support conducive to healthy behaviors (Dowshen, Binns, & Garofalo, 2009). HIV-infected persons can internalize HIV stigma by believing that they are to blame for acquiring HIV (Kalichman et al., 2009). Stigmatizing experiences may compromise their selfesteem (Dowshen et al., 2009), mental health (Bogart et al., 2011; Dowshen et al., 2009; Vanable, Carey, Blair, & Littlewood, 2006), and abilities to engage in health promoting behaviors like antiretroviral therapy adherence (Vanable et al., 2006). Additionally, persons living with HIV often fear the negative repercussions (e.g., social rejection) of others knowing their HIV status (Courtenay-Quirk et al., 2006; Rao et al., 2007), and this may preclude them from disclosing their HIV status to sexual partners. Stigma’s impacts may be particularly evident for black MSM, for whom racial and sexual orientation stigma present additive burdens (Bogart, Wagner, Galvan, & Klein, 2010). The pervasiveness of HIV stigma and its potential to compromise health warrant greater understanding of HIV stigma experienced by young MSM in the United States. During 2007–2010, estimated HIV incidence increased 29% among 13–24-year-old MSM, and black MSM accounted for 55% of incident infections within this population in 2010 (Centers for Disease Control and Prevention, 2012). Among young MSM, the worsening HIV epidemic and persistent racial disparities
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in HIV infection occur alongside multiple interacting social stigmas (e.g., racism and homophobia) that make young MSM vulnerable to HIV infection (Mustanski, Newcomb, Du Bois, Garcia, & Grov, 2011). In light of what other studies have shown with regard to HIV stigma in general, greater knowledge of this phenomenon among young MSM might increase understanding of why young MSM are increasingly becoming infected with HIV. Such knowledge might also inform the dissemination of strategies to combat stigma experienced by young MSM. The analysis for this article was guided by the following research question: How do young MSM living with HIV characterize their experiences with HIV stigma? Although two published studies within this population have identified correlates of HIV stigma (e.g., depression; Dowshen et al., 2009; Radcliffe et al., 2010) qualitative data focused on this phenomenon are lacking. Because stigma is best understood directly from the perspectives of those who experience it (Link & Phelan, 2001), young MSM’s illustrations of their experiences are invaluable. In this article, we use narrative data to understand young MSM’s experiences with and perceptions of HIV stigma.
METHODS PARTICIPANTS During the fall of 2009, a state health department, a city health department, and a public health agency conducted a case series investigation. Its purpose was to understand factors that might be associated with increasing HIV diagnoses that occurred among young MSM in an urban county in the Midwest during 2000–2008 (Centers for Disease Control and Prevention, 2011). Key community informants—who included staff persons at state and local health departments, universities, communitybased organizations, infectious disease clinics, as well as HIV-infected men—provided guidance on conducting the investigation. Because data collection activities occurred in response to a public health emergency, the state health department and the public health agency determined that the investigation did not constitute research. Therefore, institutional review board approval was not required. The public health agency provided oversight of this investigation. All activities adhered to the agency’s ethical standards governing nonresearch activities with human subjects, including informed consent. As part of this larger investigation, we purposively sampled young MSM in order to understand increasing HIV vulnerability within this population. Eligible participants (N = 149) were: MSM (determined from HIV surveillance records); aged 13–29 years when diagnosed with HIV infection during January 2006–June 2009; English-speaking; black, Hispanic/Latino (Latino), or white; and residents of the county in which the investigation occurred when diagnosed with HIV. HIV case managers and communicable disease specialists at three HIV clinics attempted to recruit eligible men during routine medical visits or via telephone. They made up to three attempts to contact eligible participants; informed men of the purpose of the investigation; scheduled interviews; described the process for participating; and acquired verbal consent for participation.
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DATA COLLECTION For the present analysis, we focus on data collected during the qualitative component of our larger investigation. Participants first completed questionnaires assessing multiple HIV risk-related factors. We then invited these participants to undergo one-on-one qualitative interviews. A sub-group of men using pseudonyms elected to be interviewed. Key informants had previously informed us that social factors (e.g., HIV stigma, homophobia, and racism) within these young MSM’s environments promoted HIV vulnerability. Therefore, we constructed a semi-structured interview guide that prompted participants to describe the contexts of their lives as well as contexts surrounding their HIV diagnosis. Questions included: What’s causing HIV to spread among young gay and bisexual men in [this county]?; What was going on in your life around the time you found out you had HIV?; What can be done to prevent HIV from spreading among young MSM?; Before you got HIV, did you ever think about becoming infected?; How did you feel after getting HIV?; What was going on in your life when you found out you got HIV?; and For you, what is it like to be a young gay or bisexual man in [this county]? Participants raised the topic of HIV stigma without prompting from the interviewer, and the interviewers used probes to acquire more in-depth data as needed. Interviews were audio recorded and transcribed verbatim. Participants received $50 as an incentive for participation.
ANALYSIS We used an inductive content analysis approach to analyze the qualitative data (Hsieh & Shannon, 2005; Zhang & Wildemuth, 2009). This approach involves researchers coding data into themes that represent phenomena under investigation. Items comprising one theme (or code) share the same meaning. Because of key informants’ prior emphasis on the social contexts surrounding young MSM, we also drew upon social ecological theory. In doing so, we analyzed these data with sensitivity to participants’ descriptions of how their health was affected by individual-level behaviors, interpersonal relationships, and the larger social contexts in which they lived (Burke, Joseph, Pasick, & Barker, 2009). A team of two behavioral scientists (coders) independently coded three interviews to develop a reliable codebook of main themes using N-Vivo version 8 (QSR International, Doncaster, Australia). The coders generated coding comparison reports, which indicated their percent agreement when applying codes to segments of text, to guide the codebook reliability testing process. After their initial coding, the team met to discuss differences in how codes were applied and to refine code definitions and combine codes to reflect themes found in the data. Codes were clustered together in coding trees, where particular branches of the tree related to a specific theme. The refined codebook was then used to independently code six additional interviews. The coders used the same process to further refine and define the codebook. This process was repeated with subsets of interviews until each coder independently applied the same themes to the same text 90% of the time. The coders then coded the remaining data with the final codebook. The final codebook consisted of 54 identi-
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fied themes, including homophobia, sexual risk, HIV status disclosure, substance use, and religious experience. HIV stigma was a prominent theme and included codes related to perceptions of stigma due to HIV status and sexual orientation. We present quotes (using pseudonyms) to illustrate themes identified during this analysis.
RESULTS Of 149 eligible participants: 8 (5%) declined to participate, 17 (11%) had moved away or were incarcerated, 4 (3%) did not speak English, and 76 (51%) had invalid contact information, did not respond to multiple attempts to contact them, or did not attend scheduled interviews. Forty-four men (30%) completed questionnaires, and 28 of these 44 men chose to complete qualitative interviews. Men who completed questionnaires and qualitative interviews were similar to eligible men who did not participate (n = 105) in terms of race (percent Black = 66%, 64%, and 63%, respectively). We found no substantive differences between participants and nonparticipants. Within the 28 qualitative interviews, men raised (without prompting) these themes related to HIV stigma: (1) negative perceptions surrounding HIV and persons living with HIV, (2) negative treatment of persons living with HIV, (3) nondisclosure of HIV status, (4) internalized stigma, (5) sexual minority stigma, (6) dissociation from HIV, and (7) combating HIV stigma.
NEGATIVE PERCEPTIONS SURROUNDING HIV AND PERSONS LIVING WITH HIV Twenty-one of the 28 men discussed society’s negative perceptions toward HIV and persons living with HIV. Several participants illustrated this by describing what they perceived to be changes in others’ body language and speech after they discovered participants were HIV infected. Many participants emphasized that uninfected persons’ attitudes suggested that HIV-infected persons were to blame for acquiring HIV: It’s much easier for me in a group setting to be like, “Yeah, I’ve got cancer.” You get sympathy. You say, “Oh, I have HIV” and it’s like, “Oh.” They kinda turn their head to the left, and they give you that look and they’re like, “Oh, well…you know…” Almost as if you did it to yourself. Cancer, God did it to you. HIV, you chose that. Which is so not the case. (Brad, White)
Some men perceived that others’ attitudes often conveyed relatively subtle clues that they were uncomfortable being around a person with HIV: It’s just a vibe that he gives off. I don’t think he’s acceptin’ of it at times, but he deals with it…Even though he tries not to show it, I see straight through it. (Nelson, Black)
Participants expressed their own fears that others would inevitably view them with contempt upon discovering they were HIV infected. The anticipation that they would be treated or viewed unfairly was common: I have such a hard time coming out telling people about my status because I’m automatically thinking, “What are they gonna think? What are they gonna say?” It’s like the stigma of it. People looking at you differently…. I just don’t want everybody looking at me differently. (Darryl, Black)
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NEGATIVE TREATMENT OF PERSONS LIVING WITH HIV Eighteen of the 28 men described unfavorable treatment that was enacted against them or other persons living with HIV. HIV-infected persons commonly were a source of derision within the community, and discriminatory actions could ostracize those living with HIV. Common behaviors included the disinfection of toilet seats and disposal of dishes used by HIV-infected persons: Another friend of mine was eating dinner one time at a friend’s house. And she had a mutual friend that was there. And he came over, he ate dinner and everything. And he left, and the mutual friend of his told him that when he left they threw the dishes away. It’s just the way they threw the fork away, they threw the glass away. And some pretty nice china…they threw it away. (Darius, Black)
Participants sometimes stated that such behaviors were commonplace even within the gay community: Even gay people look at other gay people who have HIV, like, “Oh, my God. You’re sick.” They say, “Eew, eew, you’re sick,” like cooties or some bull like that. (Alex, Black)
Having experienced and anticipated negative treatment was a reason that participants sometimes isolated themselves from others: I don’t know how the people gonna react…a clean person…People [who] knew it was like, “No, go away.” Or I don’t know what people reaction may be. That’s why I decide to be by myself. (Javier, Latino)
According to 13 of these men, this enacted stigma could manifest in the unfavorable labeling of HIV-infected persons. Others often called HIV-infected persons “tainted,” “contaminated,” “nasty,” “damaged goods,” and “sick.” Labeling sometimes occurred in the process of spreading rumors about HIV-infected persons: Some people say you sick just to be mean or they start a rumor about you. And everybody will believe it, like, “Oh, my God. I heard…he’s sick, and such and such say it, so I know it’s true.” (Gerard, Black)
Eight of the 28 participants discussed incidents of others disclosing HIV-infected persons’ HIV status. Such occurrences often resulted in public embarrassment, loss of social status, and ongoing discriminatory treatment of HIV-infected persons: I knew a performer here that was really a great performer. And someone came up, and said she’s sick. And she said, “No.” Finally admitted it. She was like, “I am. I didn’t wanna come out at first but I don’t wanna lie about it either.” And her clientele kinda got different. You know, she wasn’t actually being booked like she was before and, you know, her fans weren’t necessarily tipping her like they were before. (Darius, Black)
When men discussed having their own HIV status disclosed by others, they emphasized the distressing nature of these experiences: I told [my boyfriend] out of confidentiality. And it was so bad to the point where he would get drunk and spill my business out…to like everyone in the club. Telling everybody about me. [Interviewer: Telling them that you had HIV?] Yes. And, like I said, that’s like my biggest fear. Like, I don’t want people to have no type of perception about
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Eight of the 28 participants described how family members and other loved ones treated HIV-infected persons in a discriminatory manner. Mistreatment resulted in the dissolution of long-standing friendships, housing displacement, and disparaging comments directed toward those living with HIV. Some participants had experienced multiple instances of mistreatment from loved ones: I moved in with my sister, then I had caught a little cold. When I had the little cold, my sister told me I couldn’t stay there ’cause I’d infect the whole house. Then when I would go by my mother house, and I would use her bathroom, she’d go in right behind me and spray the bleach on the toilets and on the sink and she still do that to this day. I really been mistreated really unfairly…by my whole family. One of my best friends I had for fifteen years stopped being my friend when I told him about my status…Been best friends for so many years…He stopped bein’ my friend. And what he did was, he told his wife and his wife told her family and told everybody she knew about me. But he never talked to me since then. Never. It’s been three years. (Chris, Black)
Chris continued by describing what he perceived to be psychologically distressing events resulting from this mistreatment: I fell into a great depression. I went on depression medications. I even had thoughts of suicide. I went to a mental institution. My family crapped on me so bad…. Another one of my friends says God is punishing me because I was a bisexual. So I’ve had pie slung in my face for the last three years because of me being HIV-positive. So…it did something’ to me psychologically.
NONDISCLOSURE OF HIV STATUS Seventeen of the 28 men described how HIV stigma could deter HIV status disclosure. For these men, others’ negative perceptions and treatment could deter them from telling others that they were living with HIV: Societal non-acceptance would be a big part of it. You know, the stigmata of it. Once you’re HIV it’s a whole different world, I can attest to that. People look at you differently. One of the favorite terms is “Oh, he’s got the letters.” It’d be like “Oh, he’s black” or there’s this “Oh, well you’re less of a human being by having that.” So, you know, I could see where somebody who isn’t strong say, “Well, I just won’t tell anybody.” (Brad, White)
Most participants discussed their fear of the potential repercussions of disclosure. They described their anticipated feelings of shame and embarrassment, and many described being afraid of experiencing rejection by and subsequent isolation from potential sexual partners: [Interviewer: Why do you think people are fearful of telling people they have HIV?] I get fearful because of fear of rejection…fear of being isolated, being treated like a leper. When people know that, they push you away to the furthest. They push you away as far as they possibly can and then you feel like you’re unwanted and alone. I guess for fear of loneliness. (Dill, Black)
For several participants, shame could result when individuals other than sexual partners discovered their HIV status. These men expressed their fear of having their HIV status known throughout their communities:
HIV STIGMA FOR MSM 65 [Interviewer: Why do you think people don’t tell others that they have it?] Being honest, I’m ashamed, scared, don’t know what to do at this moment in my life anyway, so… I wouldn’t know what to do if I did tell someone. How would it go out in the world, the streets, everyone knows…the feeling that a person have for me may change. (Chief, Black)
Several participants described the implications that non-disclosure had for ongoing HIV transmission among young MSM. Fear of the negative ramifications of disclosure could outweigh concern that HIV-infected persons had for their sexual partners’ health: I think it’s a status thing. They don’t want it to get around. They don’t want people to think back and be like, “Oh, who in this period of time did I have sex with?” And then it kinda ruins their reputation and gets attached to their name and they don’t want people to know that. And that kinda takes precedence over the health of the people they may have exposed and infected up until that point. (Bob, White)
In addition to HIV status nondisclosure, some men described how stigma precluded discussions about HIV among both infected and uninfected persons during sexual interactions with serodiscordant partners: I think there’s still the stigma… people don’t place [HIV] as great of a risk as they did before…I think people aren’t talking about it and they’re not thinking about it as much as they should be. [Interviewer: Why is there this stigma that you mentioned?] You know, as a health care professional I don’t know. But I do know that a lot of the people that I’ve talked to…. I didn’t want to have to talk about it and I know they didn’t want to have to talk about it…to their sexual partners. It’s one of those sensitive topics that if people can avoid it they will, for the most part, I think. (Tommy, White)
INTERNALIZED STIGMA Thirteen of the 28 participants discussed how they and others living with HIV sometimes directed stigmatizing perceptions toward themselves. They stated that persons living with HIV commonly feel “ashamed,” “embarrassed,” “poisonous,” “nasty,” “like the leper,” and “like damaged goods” because they have HIV. After acquiring HIV, several men began to direct the stigmatizing sentiments that they used to direct to others toward themselves: Who want a HIV positive person? ‘Cause when I didn’t have it I wasn’t talking to you. We can’t do nothing together. You know what I’m saying? It’s like the stigma that I put on people I guess I put it on myself, too. And I guess I’m okay with that. (Trevor, Black)
Some men suggested that they deserved to acquire HIV because of the perceivably immoral nature of homosexuality: It almost feels like a punishment. Like, whenever I’ve thought about it, it felt like a punishment…because that message that it’s a sin and all it’s still programmed in my brain because that was what I was taught, you know, as you a child growin’ up…that thought ran across my mind that maybe this is punishment from God for living in sin for so long. (Alex, Black)
A few men believed that discriminatory treatment toward HIV-infected individuals was warranted:
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SEXUAL MINORITY STIGMA Eight of the 28 men described how negative perceptions and treatment of HIVinfected persons were associated with people’s negative views of MSM. According to participants, societal beliefs that homosexuality and bisexuality were immoral supported the idea that HIV is a disease caused by immoral behavior. Uninfected persons often believed that MSM would inevitably acquire HIV infection as a punishment for being gay or bisexual: My boyfriend who I got it from, his uncle had said to him when he came out as gay that HIV is a punishment for those who are gay. And when my mother found out that I had a boyfriend apparently one of the first things she said is, “He’s going to get HIV and die.” (Tommy, White)
A few participants recounted how they had heard negative messages about gay men in relation to HIV throughout their childhoods: My Dad used to tell me all the time, gay people catch AIDS. He used to tell me that all the time when I was growing up, like, you know. Because I used to be, really, really, just like I am now. Like very, very feminine and, you know, when I was younger. So my Dad used to tell me all the time, you know, gay people catch AIDS. (Freddy, Black)
Others sometimes inextricably linked MSM with HIV, and this caused increased concern for some participants: People think that HIV is this nasty gay man’s disease. When people look at a gay person, period, they see HIV. If you gay, you gonna get HIV…And it’s like that’s the main thing you gotta worry about. People looking at you different, you know, with daily living. (Anderson, Black)
DISSOCIATION FROM HIV Eight of the 28 participants discussed HIV-infected persons’ perceived need to distance themselves from places (most often), individuals, activities, and thoughts that were associated with HIV. A primary concern was that association with anything related to HIV would allow others to identify them as HIV infected. Men commonly expressed their fear of being seen accessing health care at an HIV clinic in which we conducted interviews: After I found out, I really didn’t wanna do the meds and I didn’t wanna come in and then I was very ashamed ’cause it’s like [very quietly], “I hope no one sees me. I don’t want people to see me walk into the HIV building.” (Darius, Black)
For some men, the common knowledge that this clinic was known to provide HIVrelated medical services was bothersome:
HIV STIGMA FOR MSM 67 This is [the name of the clinic]. It’s a place for people that have HIV, that’s it. When I got here, I was on the 2nd floor looking for you and I looked over, somebody I know. And I sat there and talked to him. And then when I was sitting there waiting before you came out, it was another boy that came out. I knew who he was. Every time I sit out there I’m just uncomfortable. ’Cause when I first got here I thought it was going to be like a, or before I came I thought it was going to be like you come at your appointment, come in, walk out and, you know, it’s not gonna say, “[the name of the clinic]” soon as you walk in. It’s like they give you cards and say, “Oh, nobody will know what this place is.” It’s [the physical address] right here. Everybody knows this building. (Anderson, Black)
One participant illustrated this phenomenon when describing his dissociation from lesbian, gay, bisexual, and transgender (LGBT) individuals: [Interviewer: Did you participate in any activities with the LGBT community?] No, if anything I avoided them like the plague. The disease, it was the disease. So, you know, going to LGBT, what if somebody saw me there? What would they assume? They would assume I was HIV-positive. You know, I couldn’t be seen with those people. “Those people”…and I say that so horribly. [Interviewer: You mean, HIV-infected people?] Right. Then they might assume that I was. [Interviewer: I mean, when I asked you about doing activities with the LGBT community I’m thinking not related to HIV.] No, but, see, that’s the whole point. [Interviewer: Oh, so your explanation to me is that people’s perception by and large is that there’s a connection between being LGBT and being HIVpositive.] Correct. Not to say that there is. But I didn’t want anybody to even think that that connection existed. (Brad, White)
Participants perceived other young men’s attempts to avoid thinking about their own HIV infections as common: A lot of people like to keep that out of sight, out of mind. The whole HIV thing, period. ’Cause I don’t really want to be thinking about it. (Trevor, Black)
COMBATING HIV STIGMA Twelve of the 28 men discussed what they believed to be strategies to combat HIV stigma. Participants commonly mentioned the need for public education about HIV. They stated that accurate messaging about HIV might improve society’s views toward HIV and treatment of HIV-infected persons. Some believed that education might make persons living with HIV more willing to disclose their HIV status: Education. I think that’s the most important thing. If they’re not educated, they don’t know. They just go off what they hear and that makes them think differently about people. (Darryl, Black)
Participants sometimes emphasized the need for societal efforts to improve understanding of HIV: The nation itself needs to not make it seem like if I touch you you’ll get it, to make it a more comfortable situation to speak on. And when people feel more comfortable they’ll be more open. They should teach it at a very young age. Don’t wait ’til the kid gets enough to, after they heard all their life, “Oh, you got AIDS, you got AIDS.” (Dill, Black)
Six of these men shared how they acquired social support from loved ones and health professionals, who helped them to manage stigmatizing experiences. Although these men did not explicitly state that increased support might be effective
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for other persons, they emphasized benefits of support that they had received. Others’ supportive reactions were sometimes counter to what they initially expected after being diagnosed with HIV infection: [Interviewer: What were your other thoughts regarding HIV before you became positive?] People changing the way they felt about me. Which, I really didn’t get too much of that. Everybody that I told was, “Okay. Well, you still family, you still my friend. I’m gonna love you regardless.” (Don, Black)
Finally, six of these participants indicated their attempts to be personally resilient against HIV stigma. Despite negative attitudes and treatment they had experienced, they emphasized their need for actions to support their own physical and mental well-being: We gonna go back to where I was sayin’ what people might think about me or how they feel about people that’s HIV positive…. It was a lot of stress. And now that I’m, gettin’ older, I don’t give a flyin’ flock what nobody says. I won’t care what nobody says ’bout me ’cause, as I mentioned earlier, I have to live for me, nobody else. (Tony, Black)
DISCUSSION Although we interviewed participants nearly 30 years after the HIV epidemic began—when one might have expected HIV stigma to be relatively inconsequential— our data illustrate young MSM’s current challenges dealing with HIV stigma. Most participants described society’s negative perceptions of persons living with HIV, and many expected that others would negatively perceive them if others discovered that they were HIV infected. This prompted some men to avoid HIV status disclosure and dissociate from things connected with HIV. Narratives suggested that HIV stigma may intersect other forms of stigma that marginalize MSM. Several men, for example, highlighted connections between HIV stigma and sexual minority stigma, which some researchers regard as a contributing factor to HIV stigma (Deacon, Stephney, & Prosalendis, 2005). Our data collectively suggest that HIV stigma is a salient social factor that young MSM living with HIV continue to experience. Notable manifestations of HIV stigma included discriminatory treatment and other forms of social ostracism. Participants regarded labeling and unwanted HIV status disclosure as common. The relatively harmful nature of HIV stigma might be intensified by the fact that family members and friends, whom young MSM might ordinarily expect to treat them favorably, often enacted it. Some behaviors that participants had experienced and witnessed (e.g., disposal of dishes) were reminiscent of early years during the HIV epidemic, when the public arguably knew relatively little about HIV transmission. Although these types of behaviors suggest that some individuals may need basic education about HIV transmission, they also suggest that young MSM and other persons living with HIV experience HIV-related discrimination that can detrimentally affect their abilities to live and cope with HIV infection (Vanable et al., 2006). Nearly half of our participants described how they and others living with HIV sometimes internalized stigmatizing perceptions and behaviors. Researchers have suggested that stigma is such an influential social force that even individuals who might otherwise be expected to counteract it (i.e., those who are stigmatized) can perpetrate it against themselves (Goffman, 1963; Hatzenbuehler, Phelan, & Link,
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2013; Link & Phelan, 2001). Because internalized stigma can induce feelings of shame and self-blame among persons living with HIV, it may be a factor through which externally experienced stigma adversely affects the health of HIV-infected persons. Although our investigation was not designed to examine mechanisms that link internalized stigma with health outcomes, one study found that internalized HIV stigma was associated with increased depression among young MSM (Dowshen et al., 2009). Moreover, a study of HIV-infected adults found that internalized HIV stigma was independently associated with increased levels of illicit drug use, which may be a mechanism for coping with internalized stigma (Wolitski, Pals, Kidder, Courtenay-Quirk, & Holtgrave, 2009). Our findings might elucidate ways in which stigma can adversely affect the well-being of young MSM and their sexual partners. Most participants described how HIV stigma led to HIV status nondisclosure and could result in uninfected men not inquiring about their partners’ HIV statuses before having sex. (Other studies similarly describe relationships between HIV stigma and these phenomena; O’Leary, 2005; Rao et al., 2007). Clearly, these behaviors can result in HIV transmission if uninfected men have unprotected sex without knowing that their partners are HIV infected. Because stigma could result in young MSM being socially ostracized, it may prevent them from acquiring social support that is conducive to their overall psychological well-being (Dowshen et al., 2009). The consequences of HIV stigma are likely worse for young black MSM, who live in communities in which HIV stigma is more prevalent than it is in other racial/ethnic communities (Kaiser Family Foundation, 2004; Rao et al., 2008). Our analysis has limitations. Although these data provide important insights into HIV stigma experienced by young MSM living with HIV, we used a small, nonprobabilistic sample of men who were, by and large, receiving HIV medical care. Thus, our participants’ experiences with HIV stigma may not represent all young MSM’s experiences. Second, although participants voluntarily discussed HIV stigma and factors related to it, our interview guide was not designed to acquire in-depth data on HIV stigma. Third, notwithstanding our finding that participants and eligible nonparticipants were similar in terms of race/ethnicity, the low response rate may have biased our findings if participants and eligible nonparticipants were significantly different in ways that affected their interview responses. Finally, the potential for recall bias existed due to lapses in time between participants’ self-reported experiences and interviews. Future investigations may acquire more thorough understanding of HIV stigma experienced by young MSM living with HIV by using more representative samples as well as quantitative analyses that examine the health effects of stigma. In spite of these limitations, our findings underscore the need to combat HIV stigma. Several participants emphasized the need for public education and ongoing dialogue to promote more positive perceptions and treatment of persons living with HIV. A recent systematic review of 14 interventions lends support to this idea (Sengupta, Banks, Jonas, Miles, & Smith, 2011). This review found that informational (e.g., brochures), skills building (e.g., hands-on learning strategies), and interactionbased (e.g., contact with HIV-infected persons) strategies have been effective at promoting positive attitudes toward persons living with HIV and increasing comfort about interacting with them. Increasing the scale of these types of interventions may be useful. Our finding regarding the social support that some participants received after being diagnosed with HIV suggests that young MSM’s family members and other loved ones may be important community stakeholders to engage when design-
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ing interventions to address HIV stigma. Moreover, given the importance of religious entities in promoting social norms, particularly within communities of color, faith-based initiatives that provide HIV education and stigma reduction trainings to parishioners might also be useful (Derose et al., 2014). Ultimately, large-scale efforts that alter societal norms may be most effective in decreasing HIV stigma. In 2012, the U.S. Centers for Disease Control and Prevention launched Let’s Stop HIV TogetherTM (Centers for Disease Control and Prevention, 2013). This mass media social marketing campaign combats HIV stigma by disseminating positive images of persons living with HIV and their loved ones. It also normalizes the process of openly discussing HIV and increases the public’s awareness about HIV. Because HIV stigma partly stems from societal homophobia (Deacon et al., 2005), social marketing efforts that promote more positive attitudes toward sexual minorities may help to counteract HIV stigma. Ongoing evaluation of these and other interventions may determine the impact of such efforts. Concerted research and programmatic activities might be fruitful in identifying the best combination of approaches to counteract HIV stigma experienced by young MSM. Stigma is a fundamental determinant of health inequity that manifests along multiple social domains (e.g., race/ethnicity and sexual orientation) and across multiple disease outcomes (Hatzenbuehler et al., 2013). Therefore, strategies may need to address the intersecting stigmas that young MSM disproportionately experience. Efforts that combat HIV stigma and other social drivers of HIV transmission may be essential for creating environments that contribute to healthy outcomes within this increasingly vulnerable population.
REFERENCES Bairan, A., Taylor, G. A., Blake, B. J., Akers, T., Sowell, R., & Mendiola, R., Jr. (2007). A model of HIV disclosure: Disclosure and types of social relationships. Journal of the American Academy of Nurse Practitioners, 19, 242–250. Bogart, L., Wagner, G., Galvan, F., & Klein, D. (2010). Longitudinal relationships between antiretroviral treatment adherence and discrimination due to HIV-serostatus, race, and sexual orientation among African– American men with HIV. Annals of Behavioral Medicine, 40, 184–190. Bogart, L. M., Wagner, G. J., Galvan, F. H., Landrine, H., Klein, D. J., & Sticklor, L. A. (2011). Perceived discrimination and mental health symptoms among Black men with HIV. Cultural Diversity and Ethnic Minority Psychology, 17, 295–302. Burke, N. J., Joseph, G., Pasick, R. J., & Barker, J. C. (2009). Theorizing social context: Rethinking behavioral theory. Health Education & Behavior, 36(5 Suppl), 55S–70S. Centers for Disease Control and Prevention. (2011). Increase in newly diagnosed HIV infections among young black men who have sex with men—Milwaukee County, Wisconsin, 1999–2008. Morbidity and Mortality Weekly Report, 60(4), 99–102.
Centers for Disease Control and Prevention. (2012). Estimated HIV incidence in the United States, 2007–2010. HIV Surveillance Supplemental Report, 17(4). Retrieved from http://www.cdc.gov/hiv/surveillance/ resources/reports/2010supp_vol17no4/pdf/ hssr_vol_17_no_4.pdf Centers for Disease Control and Prevention. (2013). Let’s Stop HIV Together. Retrieved 07/18/2013, from http://www.cdc.gov/actagainstaids/together/ Courtenay-Quirk, C., Wolitski, R. J., Parsons, J. T., & Gómez, C. A. (2006). Is HIV/AIDS stigma dividing the gay community? Perceptions of HIV–positive men who have sex with men. AIDS Education and Prevention, 18, 56–67. Deacon, H., Stephney, I., & Prosalendis, S. (2005). Understanding HIV/AIDS stigma: A theoretical and methodological analysis. Chicago, IL: Human Services Research Council Press. Derose, K. P., Bogart, L. M., Kanouse, D. E., Felton, A., Collins, D. O., Mata, M. A., et al. (2014) An intervention to reduce HIVrelated stigma in partnership with African American and Latino churches. AIDS Education and Prevention, 26, 28–42.
HIV STIGMA FOR MSM 71 Dowshen, N., Binns, H. J., & Garofalo, R. (2009). Experiences of HIV-related stigma among young men who have sex with men. AIDS Patient Care and STDs, 23, 371–376. Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Englewood Cliffs, NJ: Prentice-Hall. Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103, 813–821. Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277– 1288. Kaiser Family Foundation. (2004). Survey of Americans on HIV/AIDS: Part three—Experiences and opinions by race/ethnicity and age. Washington, DC: Kaiser Family Foundation. Kalichman, S. C., Simbayi, L. C., Cloete, A., Mthembu, P. P., Mkhonta, R. N., & Ginindza, T. (2009). Measuring AIDS stigmas in people living with HIV/AIDS: The Internalized AIDS-Related Stigma Scale. AIDS Care, 21, 87–93. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385. Maman, S., Abler, L., Parker, L., Lane, T., Chirowodza, A., Ntogwisangu, J., et al. (2009). A comparison of HIV stigma and discrimination in five international sites: The influence of care and treatment resources in high prevalence settings. Social Science & Medicine, 68, 2271–2278. Mustanski, B. S., Newcomb, M. E., Du Bois, S. N., Garcia, S. C., & Grov, C. (2011). HIV in young men who have sex with men: A review of epidemiology, risk and protective factors, and interventions. Journal of Sex Research, 48, 218–253. O’Leary, A. (2005). Guessing games: Sex partner serostatus assumptions among HIV-positive gay and bisexual men. In P. Halkitis, C. Go-
mez, & R. J. Wolitski (Eds.), HIV+ sex: The psychological and interpersonal dynamics of HIV-seropositive gay and bisexual men’s relationships (pp. 121–132). Washington, DC: American Psychological Association. Radcliffe, J., Doty, N., Hawkins, L. A., Gaskins, C. S., Beidas, R., & Rudy, B. J. (2010). Stigma and sexual health risk in HIV-positive African American young men who have sex with men. AIDS Patient Care and STDs, 24, 493–499. Rao, D., Kekwaletswe, T. C., Hosek, S., Martinez, J., & Rodriguez, F. (2007). Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care, 19, 28–33. Rao, D., Pryor, J., Gaddist, B., & Mayer, R. (2008). Stigma, secrecy, and discrimination: Ethnic/ racial differences in the concerns of people living with HIV/AIDS. AIDS and Behavior, 12, 265–271. Scrambler, G. (2009). Health-related stigma. Sociology of Health & Illness, 31, 441–455. Sengupta, S., Banks, B., Jonas, D., Miles, M., & Smith, G. (2011). HIV interventions to reduce HIV/AIDS stigma: A systematic review. AIDS and Behavior, 15, 1075–1087. Vanable, P., Carey, M., Blair, D., & Littlewood, R. (2006). Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS and Behavior, 10, 473–482. Wolitski, R., Pals, S., Kidder, D., Courtenay-Quirk, C., & Holtgrave, D. (2009). The effects of HIV stigma on health, disclosure of HIV status, and risk behavior of homeless and unstably housed persons living with HIV. AIDS and Behavior, 13, 1222–1232. Zhang, Y., & Wildemuth, B. M. (2009). Qualitative analysis of content. In B. M. Wildemuth (Ed.), Applications of social research methods to questions in information and library science (pp. 308–319). Westport, CT: Libraries Unlimited.
HIV STIGMA EXPERIENCED BY YOUNG MEN WHO HAVE SEX WITH MEN (MSM) LIVING WITH HIV INFECTION William L. Jeffries IV, Ebony Symone Townsend, Deborah J. Gelaude, Elizabeth A. Torrone, Mari Gasiorowicz, and Jeanne Bertolli
Stigma can compromise the health of persons living with HIV. Although HIV is increasingly affecting young men who have sex with men (MSM), little is known about their experiences with HIV stigma. We used narrative data to examine HIV stigma experienced by young MSM living with HIV. Data came from 28 qualitative interviews with young MSM. We used inductive content analysis to identify themes across these interviews. Participants commonly discussed negative perceptions and treatment of persons living with HIV. Stigma could result in nondisclosure of HIV status, internalized stigma, and avoidance of HIV-related things. Some men discussed strategies that might combat stigma. Findings suggest that HIV stigma might challenge young MSM’s health by undermining health-conducive resources (e.g., social support) and contributing to HIV vulnerability. Interventions that counteract HIV stigma may help to create environments that promote well-being among young MSM living with HIV.
William L. Jeffries IV, PhD, MPH, MA, Ebony Symone Townsend, BS, BA, Deborah J. Gelaude, MA, and Jeanne Bertolli, PhD, MPH, are affiliated with the Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia. Elizabeth A. Torrone, PhD MSPH, is affiliated with the Division of STD Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia. Mari Gasiorowicz, MA, is affiliated with the Division of Public Health, Wisconsin Department of Health Services, Madison, Wisconsin. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The authors received no financial support for the research, authorship, and/or publication of this article. The authors are grateful for the contributions of the following individuals: Christopher Bering, Jackie Grayson, Neil Hoxie, Karen Johnson, Wendy Schell, Casey Schumann, Jim Stodola, James Vergeront, Anthony Wade (Wisconsin Division of Public Health); Bevan Baker, Paul Biedrzycki, Earl Blair, Sandra Mattson, Emerald Mills, Otilio Oyervides, Daphne Prater, Irmine Reitl, Deidre Simms, Michael Starks, Karin Tyler, Vanessa Vann, Helen White (City of Milwaukee Health Department); Megan Corey, John Fangman, Dawn Perkins (AIDS Resource Center of Wisconsin); Kathy Donovan, Jose Salazar, Maria Toscano (Sixteenth Street Community Health Center); Julie Bock, Johhny King (Milwaukee LGBT Community Center); Brenda Coley, Gary Hollander (Diverse and Resilient, Inc.); D. Cal Ham, Donna Hubbard McCree, Thomas A. Peterman, David Purcell, Travis Sanchez, Pilgrim S. Spikes, Jr. (Centers for Disease Control and Prevention); and Al Heck. Address correspondence to Dr. William L. Jeffries IV, Centers for Disease Control and Prevention, 1600 Clifton Rd., MS E37, Atlanta, GA 30333. E-mail: [email protected]
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Stigma occurs when relatively powerful social groups devalue marginalized groups because of perceptions that the latter possess socially unbecoming characteristics (Goffman, 1963). Researchers have conceptualized stigma with respect to the actions of stigmatized persons as well as individuals who perpetrate stigma. Enacted stigma encompasses discriminatory actions and prejudicial attitudes that stigmatized persons experience in their interactions with individuals and social institutions (Scrambler, 2009). Perceived stigma refers to the fear and shameful feelings that marginalized persons anticipate at the thought of others treating them negatively (Scrambler, 2009). Stigmatized persons can also internalize stigma by believing that they are to blame for either their plights or others’ negative treatment of them (Goffman, 1963). Stigma is a formidable public health challenge because it dehumanizes groups that disproportionately suffer health problems and simultaneously promotes negative attitudes that inhibit public responses to these problems (Maman et al., 2009). Stigma related to HIV infection is particularly challenging for persons living with HIV in the United States. In a 2004 study, 45% of U.S. adults reported believing that “a lot” of prejudice and discrimination exists against HIV-infected people (Kaiser Family Foundation, 2004). In more recent studies—despite the lack of national-level data—persons living with HIV have commonly reported experiencing shame (Bairan et al., 2007), judgment (Courtenay-Quirk, Wolitski, Parsons, & Gómez, 2006), and discriminatory treatment like forced housing displacement (Rao, Kekwaletswe, Hosek, Martinez, & Rodriguez, 2007) because of their HIV status. Such experiences are common among individuals from communities that are disproportionately affected by HIV. In one study, for example, many HIV-infected men who had sex with men (MSM) reported perceiving the gay community’s discrimination against (61%) and judgment toward (36%) MSM living with HIV infection (Courtenay-Quirk et al., 2006). Moreover, HIV-infected black Americans report greater concern with experiencing HIV-related discrimination than HIV-infected white Americans (Rao, Pryor, Gaddist, & Mayer, 2008). HIV stigma can negatively affect the well-being of persons living with HIV and those who are at risk for HIV. Stigma may socially isolate HIV-infected persons (Courtenay-Quirk et al., 2006) and it can inhibit them from acquiring social support conducive to healthy behaviors (Dowshen, Binns, & Garofalo, 2009). HIV-infected persons can internalize HIV stigma by believing that they are to blame for acquiring HIV (Kalichman et al., 2009). Stigmatizing experiences may compromise their selfesteem (Dowshen et al., 2009), mental health (Bogart et al., 2011; Dowshen et al., 2009; Vanable, Carey, Blair, & Littlewood, 2006), and abilities to engage in health promoting behaviors like antiretroviral therapy adherence (Vanable et al., 2006). Additionally, persons living with HIV often fear the negative repercussions (e.g., social rejection) of others knowing their HIV status (Courtenay-Quirk et al., 2006; Rao et al., 2007), and this may preclude them from disclosing their HIV status to sexual partners. Stigma’s impacts may be particularly evident for black MSM, for whom racial and sexual orientation stigma present additive burdens (Bogart, Wagner, Galvan, & Klein, 2010). The pervasiveness of HIV stigma and its potential to compromise health warrant greater understanding of HIV stigma experienced by young MSM in the United States. During 2007–2010, estimated HIV incidence increased 29% among 13–24-year-old MSM, and black MSM accounted for 55% of incident infections within this population in 2010 (Centers for Disease Control and Prevention, 2012). Among young MSM, the worsening HIV epidemic and persistent racial disparities
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in HIV infection occur alongside multiple interacting social stigmas (e.g., racism and homophobia) that make young MSM vulnerable to HIV infection (Mustanski, Newcomb, Du Bois, Garcia, & Grov, 2011). In light of what other studies have shown with regard to HIV stigma in general, greater knowledge of this phenomenon among young MSM might increase understanding of why young MSM are increasingly becoming infected with HIV. Such knowledge might also inform the dissemination of strategies to combat stigma experienced by young MSM. The analysis for this article was guided by the following research question: How do young MSM living with HIV characterize their experiences with HIV stigma? Although two published studies within this population have identified correlates of HIV stigma (e.g., depression; Dowshen et al., 2009; Radcliffe et al., 2010) qualitative data focused on this phenomenon are lacking. Because stigma is best understood directly from the perspectives of those who experience it (Link & Phelan, 2001), young MSM’s illustrations of their experiences are invaluable. In this article, we use narrative data to understand young MSM’s experiences with and perceptions of HIV stigma.
METHODS PARTICIPANTS During the fall of 2009, a state health department, a city health department, and a public health agency conducted a case series investigation. Its purpose was to understand factors that might be associated with increasing HIV diagnoses that occurred among young MSM in an urban county in the Midwest during 2000–2008 (Centers for Disease Control and Prevention, 2011). Key community informants—who included staff persons at state and local health departments, universities, communitybased organizations, infectious disease clinics, as well as HIV-infected men—provided guidance on conducting the investigation. Because data collection activities occurred in response to a public health emergency, the state health department and the public health agency determined that the investigation did not constitute research. Therefore, institutional review board approval was not required. The public health agency provided oversight of this investigation. All activities adhered to the agency’s ethical standards governing nonresearch activities with human subjects, including informed consent. As part of this larger investigation, we purposively sampled young MSM in order to understand increasing HIV vulnerability within this population. Eligible participants (N = 149) were: MSM (determined from HIV surveillance records); aged 13–29 years when diagnosed with HIV infection during January 2006–June 2009; English-speaking; black, Hispanic/Latino (Latino), or white; and residents of the county in which the investigation occurred when diagnosed with HIV. HIV case managers and communicable disease specialists at three HIV clinics attempted to recruit eligible men during routine medical visits or via telephone. They made up to three attempts to contact eligible participants; informed men of the purpose of the investigation; scheduled interviews; described the process for participating; and acquired verbal consent for participation.
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DATA COLLECTION For the present analysis, we focus on data collected during the qualitative component of our larger investigation. Participants first completed questionnaires assessing multiple HIV risk-related factors. We then invited these participants to undergo one-on-one qualitative interviews. A sub-group of men using pseudonyms elected to be interviewed. Key informants had previously informed us that social factors (e.g., HIV stigma, homophobia, and racism) within these young MSM’s environments promoted HIV vulnerability. Therefore, we constructed a semi-structured interview guide that prompted participants to describe the contexts of their lives as well as contexts surrounding their HIV diagnosis. Questions included: What’s causing HIV to spread among young gay and bisexual men in [this county]?; What was going on in your life around the time you found out you had HIV?; What can be done to prevent HIV from spreading among young MSM?; Before you got HIV, did you ever think about becoming infected?; How did you feel after getting HIV?; What was going on in your life when you found out you got HIV?; and For you, what is it like to be a young gay or bisexual man in [this county]? Participants raised the topic of HIV stigma without prompting from the interviewer, and the interviewers used probes to acquire more in-depth data as needed. Interviews were audio recorded and transcribed verbatim. Participants received $50 as an incentive for participation.
ANALYSIS We used an inductive content analysis approach to analyze the qualitative data (Hsieh & Shannon, 2005; Zhang & Wildemuth, 2009). This approach involves researchers coding data into themes that represent phenomena under investigation. Items comprising one theme (or code) share the same meaning. Because of key informants’ prior emphasis on the social contexts surrounding young MSM, we also drew upon social ecological theory. In doing so, we analyzed these data with sensitivity to participants’ descriptions of how their health was affected by individual-level behaviors, interpersonal relationships, and the larger social contexts in which they lived (Burke, Joseph, Pasick, & Barker, 2009). A team of two behavioral scientists (coders) independently coded three interviews to develop a reliable codebook of main themes using N-Vivo version 8 (QSR International, Doncaster, Australia). The coders generated coding comparison reports, which indicated their percent agreement when applying codes to segments of text, to guide the codebook reliability testing process. After their initial coding, the team met to discuss differences in how codes were applied and to refine code definitions and combine codes to reflect themes found in the data. Codes were clustered together in coding trees, where particular branches of the tree related to a specific theme. The refined codebook was then used to independently code six additional interviews. The coders used the same process to further refine and define the codebook. This process was repeated with subsets of interviews until each coder independently applied the same themes to the same text 90% of the time. The coders then coded the remaining data with the final codebook. The final codebook consisted of 54 identi-
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fied themes, including homophobia, sexual risk, HIV status disclosure, substance use, and religious experience. HIV stigma was a prominent theme and included codes related to perceptions of stigma due to HIV status and sexual orientation. We present quotes (using pseudonyms) to illustrate themes identified during this analysis.
RESULTS Of 149 eligible participants: 8 (5%) declined to participate, 17 (11%) had moved away or were incarcerated, 4 (3%) did not speak English, and 76 (51%) had invalid contact information, did not respond to multiple attempts to contact them, or did not attend scheduled interviews. Forty-four men (30%) completed questionnaires, and 28 of these 44 men chose to complete qualitative interviews. Men who completed questionnaires and qualitative interviews were similar to eligible men who did not participate (n = 105) in terms of race (percent Black = 66%, 64%, and 63%, respectively). We found no substantive differences between participants and nonparticipants. Within the 28 qualitative interviews, men raised (without prompting) these themes related to HIV stigma: (1) negative perceptions surrounding HIV and persons living with HIV, (2) negative treatment of persons living with HIV, (3) nondisclosure of HIV status, (4) internalized stigma, (5) sexual minority stigma, (6) dissociation from HIV, and (7) combating HIV stigma.
NEGATIVE PERCEPTIONS SURROUNDING HIV AND PERSONS LIVING WITH HIV Twenty-one of the 28 men discussed society’s negative perceptions toward HIV and persons living with HIV. Several participants illustrated this by describing what they perceived to be changes in others’ body language and speech after they discovered participants were HIV infected. Many participants emphasized that uninfected persons’ attitudes suggested that HIV-infected persons were to blame for acquiring HIV: It’s much easier for me in a group setting to be like, “Yeah, I’ve got cancer.” You get sympathy. You say, “Oh, I have HIV” and it’s like, “Oh.” They kinda turn their head to the left, and they give you that look and they’re like, “Oh, well…you know…” Almost as if you did it to yourself. Cancer, God did it to you. HIV, you chose that. Which is so not the case. (Brad, White)
Some men perceived that others’ attitudes often conveyed relatively subtle clues that they were uncomfortable being around a person with HIV: It’s just a vibe that he gives off. I don’t think he’s acceptin’ of it at times, but he deals with it…Even though he tries not to show it, I see straight through it. (Nelson, Black)
Participants expressed their own fears that others would inevitably view them with contempt upon discovering they were HIV infected. The anticipation that they would be treated or viewed unfairly was common: I have such a hard time coming out telling people about my status because I’m automatically thinking, “What are they gonna think? What are they gonna say?” It’s like the stigma of it. People looking at you differently…. I just don’t want everybody looking at me differently. (Darryl, Black)
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NEGATIVE TREATMENT OF PERSONS LIVING WITH HIV Eighteen of the 28 men described unfavorable treatment that was enacted against them or other persons living with HIV. HIV-infected persons commonly were a source of derision within the community, and discriminatory actions could ostracize those living with HIV. Common behaviors included the disinfection of toilet seats and disposal of dishes used by HIV-infected persons: Another friend of mine was eating dinner one time at a friend’s house. And she had a mutual friend that was there. And he came over, he ate dinner and everything. And he left, and the mutual friend of his told him that when he left they threw the dishes away. It’s just the way they threw the fork away, they threw the glass away. And some pretty nice china…they threw it away. (Darius, Black)
Participants sometimes stated that such behaviors were commonplace even within the gay community: Even gay people look at other gay people who have HIV, like, “Oh, my God. You’re sick.” They say, “Eew, eew, you’re sick,” like cooties or some bull like that. (Alex, Black)
Having experienced and anticipated negative treatment was a reason that participants sometimes isolated themselves from others: I don’t know how the people gonna react…a clean person…People [who] knew it was like, “No, go away.” Or I don’t know what people reaction may be. That’s why I decide to be by myself. (Javier, Latino)
According to 13 of these men, this enacted stigma could manifest in the unfavorable labeling of HIV-infected persons. Others often called HIV-infected persons “tainted,” “contaminated,” “nasty,” “damaged goods,” and “sick.” Labeling sometimes occurred in the process of spreading rumors about HIV-infected persons: Some people say you sick just to be mean or they start a rumor about you. And everybody will believe it, like, “Oh, my God. I heard…he’s sick, and such and such say it, so I know it’s true.” (Gerard, Black)
Eight of the 28 participants discussed incidents of others disclosing HIV-infected persons’ HIV status. Such occurrences often resulted in public embarrassment, loss of social status, and ongoing discriminatory treatment of HIV-infected persons: I knew a performer here that was really a great performer. And someone came up, and said she’s sick. And she said, “No.” Finally admitted it. She was like, “I am. I didn’t wanna come out at first but I don’t wanna lie about it either.” And her clientele kinda got different. You know, she wasn’t actually being booked like she was before and, you know, her fans weren’t necessarily tipping her like they were before. (Darius, Black)
When men discussed having their own HIV status disclosed by others, they emphasized the distressing nature of these experiences: I told [my boyfriend] out of confidentiality. And it was so bad to the point where he would get drunk and spill my business out…to like everyone in the club. Telling everybody about me. [Interviewer: Telling them that you had HIV?] Yes. And, like I said, that’s like my biggest fear. Like, I don’t want people to have no type of perception about
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Eight of the 28 participants described how family members and other loved ones treated HIV-infected persons in a discriminatory manner. Mistreatment resulted in the dissolution of long-standing friendships, housing displacement, and disparaging comments directed toward those living with HIV. Some participants had experienced multiple instances of mistreatment from loved ones: I moved in with my sister, then I had caught a little cold. When I had the little cold, my sister told me I couldn’t stay there ’cause I’d infect the whole house. Then when I would go by my mother house, and I would use her bathroom, she’d go in right behind me and spray the bleach on the toilets and on the sink and she still do that to this day. I really been mistreated really unfairly…by my whole family. One of my best friends I had for fifteen years stopped being my friend when I told him about my status…Been best friends for so many years…He stopped bein’ my friend. And what he did was, he told his wife and his wife told her family and told everybody she knew about me. But he never talked to me since then. Never. It’s been three years. (Chris, Black)
Chris continued by describing what he perceived to be psychologically distressing events resulting from this mistreatment: I fell into a great depression. I went on depression medications. I even had thoughts of suicide. I went to a mental institution. My family crapped on me so bad…. Another one of my friends says God is punishing me because I was a bisexual. So I’ve had pie slung in my face for the last three years because of me being HIV-positive. So…it did something’ to me psychologically.
NONDISCLOSURE OF HIV STATUS Seventeen of the 28 men described how HIV stigma could deter HIV status disclosure. For these men, others’ negative perceptions and treatment could deter them from telling others that they were living with HIV: Societal non-acceptance would be a big part of it. You know, the stigmata of it. Once you’re HIV it’s a whole different world, I can attest to that. People look at you differently. One of the favorite terms is “Oh, he’s got the letters.” It’d be like “Oh, he’s black” or there’s this “Oh, well you’re less of a human being by having that.” So, you know, I could see where somebody who isn’t strong say, “Well, I just won’t tell anybody.” (Brad, White)
Most participants discussed their fear of the potential repercussions of disclosure. They described their anticipated feelings of shame and embarrassment, and many described being afraid of experiencing rejection by and subsequent isolation from potential sexual partners: [Interviewer: Why do you think people are fearful of telling people they have HIV?] I get fearful because of fear of rejection…fear of being isolated, being treated like a leper. When people know that, they push you away to the furthest. They push you away as far as they possibly can and then you feel like you’re unwanted and alone. I guess for fear of loneliness. (Dill, Black)
For several participants, shame could result when individuals other than sexual partners discovered their HIV status. These men expressed their fear of having their HIV status known throughout their communities:
HIV STIGMA FOR MSM 65 [Interviewer: Why do you think people don’t tell others that they have it?] Being honest, I’m ashamed, scared, don’t know what to do at this moment in my life anyway, so… I wouldn’t know what to do if I did tell someone. How would it go out in the world, the streets, everyone knows…the feeling that a person have for me may change. (Chief, Black)
Several participants described the implications that non-disclosure had for ongoing HIV transmission among young MSM. Fear of the negative ramifications of disclosure could outweigh concern that HIV-infected persons had for their sexual partners’ health: I think it’s a status thing. They don’t want it to get around. They don’t want people to think back and be like, “Oh, who in this period of time did I have sex with?” And then it kinda ruins their reputation and gets attached to their name and they don’t want people to know that. And that kinda takes precedence over the health of the people they may have exposed and infected up until that point. (Bob, White)
In addition to HIV status nondisclosure, some men described how stigma precluded discussions about HIV among both infected and uninfected persons during sexual interactions with serodiscordant partners: I think there’s still the stigma… people don’t place [HIV] as great of a risk as they did before…I think people aren’t talking about it and they’re not thinking about it as much as they should be. [Interviewer: Why is there this stigma that you mentioned?] You know, as a health care professional I don’t know. But I do know that a lot of the people that I’ve talked to…. I didn’t want to have to talk about it and I know they didn’t want to have to talk about it…to their sexual partners. It’s one of those sensitive topics that if people can avoid it they will, for the most part, I think. (Tommy, White)
INTERNALIZED STIGMA Thirteen of the 28 participants discussed how they and others living with HIV sometimes directed stigmatizing perceptions toward themselves. They stated that persons living with HIV commonly feel “ashamed,” “embarrassed,” “poisonous,” “nasty,” “like the leper,” and “like damaged goods” because they have HIV. After acquiring HIV, several men began to direct the stigmatizing sentiments that they used to direct to others toward themselves: Who want a HIV positive person? ‘Cause when I didn’t have it I wasn’t talking to you. We can’t do nothing together. You know what I’m saying? It’s like the stigma that I put on people I guess I put it on myself, too. And I guess I’m okay with that. (Trevor, Black)
Some men suggested that they deserved to acquire HIV because of the perceivably immoral nature of homosexuality: It almost feels like a punishment. Like, whenever I’ve thought about it, it felt like a punishment…because that message that it’s a sin and all it’s still programmed in my brain because that was what I was taught, you know, as you a child growin’ up…that thought ran across my mind that maybe this is punishment from God for living in sin for so long. (Alex, Black)
A few men believed that discriminatory treatment toward HIV-infected individuals was warranted:
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SEXUAL MINORITY STIGMA Eight of the 28 men described how negative perceptions and treatment of HIVinfected persons were associated with people’s negative views of MSM. According to participants, societal beliefs that homosexuality and bisexuality were immoral supported the idea that HIV is a disease caused by immoral behavior. Uninfected persons often believed that MSM would inevitably acquire HIV infection as a punishment for being gay or bisexual: My boyfriend who I got it from, his uncle had said to him when he came out as gay that HIV is a punishment for those who are gay. And when my mother found out that I had a boyfriend apparently one of the first things she said is, “He’s going to get HIV and die.” (Tommy, White)
A few participants recounted how they had heard negative messages about gay men in relation to HIV throughout their childhoods: My Dad used to tell me all the time, gay people catch AIDS. He used to tell me that all the time when I was growing up, like, you know. Because I used to be, really, really, just like I am now. Like very, very feminine and, you know, when I was younger. So my Dad used to tell me all the time, you know, gay people catch AIDS. (Freddy, Black)
Others sometimes inextricably linked MSM with HIV, and this caused increased concern for some participants: People think that HIV is this nasty gay man’s disease. When people look at a gay person, period, they see HIV. If you gay, you gonna get HIV…And it’s like that’s the main thing you gotta worry about. People looking at you different, you know, with daily living. (Anderson, Black)
DISSOCIATION FROM HIV Eight of the 28 participants discussed HIV-infected persons’ perceived need to distance themselves from places (most often), individuals, activities, and thoughts that were associated with HIV. A primary concern was that association with anything related to HIV would allow others to identify them as HIV infected. Men commonly expressed their fear of being seen accessing health care at an HIV clinic in which we conducted interviews: After I found out, I really didn’t wanna do the meds and I didn’t wanna come in and then I was very ashamed ’cause it’s like [very quietly], “I hope no one sees me. I don’t want people to see me walk into the HIV building.” (Darius, Black)
For some men, the common knowledge that this clinic was known to provide HIVrelated medical services was bothersome:
HIV STIGMA FOR MSM 67 This is [the name of the clinic]. It’s a place for people that have HIV, that’s it. When I got here, I was on the 2nd floor looking for you and I looked over, somebody I know. And I sat there and talked to him. And then when I was sitting there waiting before you came out, it was another boy that came out. I knew who he was. Every time I sit out there I’m just uncomfortable. ’Cause when I first got here I thought it was going to be like a, or before I came I thought it was going to be like you come at your appointment, come in, walk out and, you know, it’s not gonna say, “[the name of the clinic]” soon as you walk in. It’s like they give you cards and say, “Oh, nobody will know what this place is.” It’s [the physical address] right here. Everybody knows this building. (Anderson, Black)
One participant illustrated this phenomenon when describing his dissociation from lesbian, gay, bisexual, and transgender (LGBT) individuals: [Interviewer: Did you participate in any activities with the LGBT community?] No, if anything I avoided them like the plague. The disease, it was the disease. So, you know, going to LGBT, what if somebody saw me there? What would they assume? They would assume I was HIV-positive. You know, I couldn’t be seen with those people. “Those people”…and I say that so horribly. [Interviewer: You mean, HIV-infected people?] Right. Then they might assume that I was. [Interviewer: I mean, when I asked you about doing activities with the LGBT community I’m thinking not related to HIV.] No, but, see, that’s the whole point. [Interviewer: Oh, so your explanation to me is that people’s perception by and large is that there’s a connection between being LGBT and being HIVpositive.] Correct. Not to say that there is. But I didn’t want anybody to even think that that connection existed. (Brad, White)
Participants perceived other young men’s attempts to avoid thinking about their own HIV infections as common: A lot of people like to keep that out of sight, out of mind. The whole HIV thing, period. ’Cause I don’t really want to be thinking about it. (Trevor, Black)
COMBATING HIV STIGMA Twelve of the 28 men discussed what they believed to be strategies to combat HIV stigma. Participants commonly mentioned the need for public education about HIV. They stated that accurate messaging about HIV might improve society’s views toward HIV and treatment of HIV-infected persons. Some believed that education might make persons living with HIV more willing to disclose their HIV status: Education. I think that’s the most important thing. If they’re not educated, they don’t know. They just go off what they hear and that makes them think differently about people. (Darryl, Black)
Participants sometimes emphasized the need for societal efforts to improve understanding of HIV: The nation itself needs to not make it seem like if I touch you you’ll get it, to make it a more comfortable situation to speak on. And when people feel more comfortable they’ll be more open. They should teach it at a very young age. Don’t wait ’til the kid gets enough to, after they heard all their life, “Oh, you got AIDS, you got AIDS.” (Dill, Black)
Six of these men shared how they acquired social support from loved ones and health professionals, who helped them to manage stigmatizing experiences. Although these men did not explicitly state that increased support might be effective
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for other persons, they emphasized benefits of support that they had received. Others’ supportive reactions were sometimes counter to what they initially expected after being diagnosed with HIV infection: [Interviewer: What were your other thoughts regarding HIV before you became positive?] People changing the way they felt about me. Which, I really didn’t get too much of that. Everybody that I told was, “Okay. Well, you still family, you still my friend. I’m gonna love you regardless.” (Don, Black)
Finally, six of these participants indicated their attempts to be personally resilient against HIV stigma. Despite negative attitudes and treatment they had experienced, they emphasized their need for actions to support their own physical and mental well-being: We gonna go back to where I was sayin’ what people might think about me or how they feel about people that’s HIV positive…. It was a lot of stress. And now that I’m, gettin’ older, I don’t give a flyin’ flock what nobody says. I won’t care what nobody says ’bout me ’cause, as I mentioned earlier, I have to live for me, nobody else. (Tony, Black)
DISCUSSION Although we interviewed participants nearly 30 years after the HIV epidemic began—when one might have expected HIV stigma to be relatively inconsequential— our data illustrate young MSM’s current challenges dealing with HIV stigma. Most participants described society’s negative perceptions of persons living with HIV, and many expected that others would negatively perceive them if others discovered that they were HIV infected. This prompted some men to avoid HIV status disclosure and dissociate from things connected with HIV. Narratives suggested that HIV stigma may intersect other forms of stigma that marginalize MSM. Several men, for example, highlighted connections between HIV stigma and sexual minority stigma, which some researchers regard as a contributing factor to HIV stigma (Deacon, Stephney, & Prosalendis, 2005). Our data collectively suggest that HIV stigma is a salient social factor that young MSM living with HIV continue to experience. Notable manifestations of HIV stigma included discriminatory treatment and other forms of social ostracism. Participants regarded labeling and unwanted HIV status disclosure as common. The relatively harmful nature of HIV stigma might be intensified by the fact that family members and friends, whom young MSM might ordinarily expect to treat them favorably, often enacted it. Some behaviors that participants had experienced and witnessed (e.g., disposal of dishes) were reminiscent of early years during the HIV epidemic, when the public arguably knew relatively little about HIV transmission. Although these types of behaviors suggest that some individuals may need basic education about HIV transmission, they also suggest that young MSM and other persons living with HIV experience HIV-related discrimination that can detrimentally affect their abilities to live and cope with HIV infection (Vanable et al., 2006). Nearly half of our participants described how they and others living with HIV sometimes internalized stigmatizing perceptions and behaviors. Researchers have suggested that stigma is such an influential social force that even individuals who might otherwise be expected to counteract it (i.e., those who are stigmatized) can perpetrate it against themselves (Goffman, 1963; Hatzenbuehler, Phelan, & Link,
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2013; Link & Phelan, 2001). Because internalized stigma can induce feelings of shame and self-blame among persons living with HIV, it may be a factor through which externally experienced stigma adversely affects the health of HIV-infected persons. Although our investigation was not designed to examine mechanisms that link internalized stigma with health outcomes, one study found that internalized HIV stigma was associated with increased depression among young MSM (Dowshen et al., 2009). Moreover, a study of HIV-infected adults found that internalized HIV stigma was independently associated with increased levels of illicit drug use, which may be a mechanism for coping with internalized stigma (Wolitski, Pals, Kidder, Courtenay-Quirk, & Holtgrave, 2009). Our findings might elucidate ways in which stigma can adversely affect the well-being of young MSM and their sexual partners. Most participants described how HIV stigma led to HIV status nondisclosure and could result in uninfected men not inquiring about their partners’ HIV statuses before having sex. (Other studies similarly describe relationships between HIV stigma and these phenomena; O’Leary, 2005; Rao et al., 2007). Clearly, these behaviors can result in HIV transmission if uninfected men have unprotected sex without knowing that their partners are HIV infected. Because stigma could result in young MSM being socially ostracized, it may prevent them from acquiring social support that is conducive to their overall psychological well-being (Dowshen et al., 2009). The consequences of HIV stigma are likely worse for young black MSM, who live in communities in which HIV stigma is more prevalent than it is in other racial/ethnic communities (Kaiser Family Foundation, 2004; Rao et al., 2008). Our analysis has limitations. Although these data provide important insights into HIV stigma experienced by young MSM living with HIV, we used a small, nonprobabilistic sample of men who were, by and large, receiving HIV medical care. Thus, our participants’ experiences with HIV stigma may not represent all young MSM’s experiences. Second, although participants voluntarily discussed HIV stigma and factors related to it, our interview guide was not designed to acquire in-depth data on HIV stigma. Third, notwithstanding our finding that participants and eligible nonparticipants were similar in terms of race/ethnicity, the low response rate may have biased our findings if participants and eligible nonparticipants were significantly different in ways that affected their interview responses. Finally, the potential for recall bias existed due to lapses in time between participants’ self-reported experiences and interviews. Future investigations may acquire more thorough understanding of HIV stigma experienced by young MSM living with HIV by using more representative samples as well as quantitative analyses that examine the health effects of stigma. In spite of these limitations, our findings underscore the need to combat HIV stigma. Several participants emphasized the need for public education and ongoing dialogue to promote more positive perceptions and treatment of persons living with HIV. A recent systematic review of 14 interventions lends support to this idea (Sengupta, Banks, Jonas, Miles, & Smith, 2011). This review found that informational (e.g., brochures), skills building (e.g., hands-on learning strategies), and interactionbased (e.g., contact with HIV-infected persons) strategies have been effective at promoting positive attitudes toward persons living with HIV and increasing comfort about interacting with them. Increasing the scale of these types of interventions may be useful. Our finding regarding the social support that some participants received after being diagnosed with HIV suggests that young MSM’s family members and other loved ones may be important community stakeholders to engage when design-
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ing interventions to address HIV stigma. Moreover, given the importance of religious entities in promoting social norms, particularly within communities of color, faith-based initiatives that provide HIV education and stigma reduction trainings to parishioners might also be useful (Derose et al., 2014). Ultimately, large-scale efforts that alter societal norms may be most effective in decreasing HIV stigma. In 2012, the U.S. Centers for Disease Control and Prevention launched Let’s Stop HIV TogetherTM (Centers for Disease Control and Prevention, 2013). This mass media social marketing campaign combats HIV stigma by disseminating positive images of persons living with HIV and their loved ones. It also normalizes the process of openly discussing HIV and increases the public’s awareness about HIV. Because HIV stigma partly stems from societal homophobia (Deacon et al., 2005), social marketing efforts that promote more positive attitudes toward sexual minorities may help to counteract HIV stigma. Ongoing evaluation of these and other interventions may determine the impact of such efforts. Concerted research and programmatic activities might be fruitful in identifying the best combination of approaches to counteract HIV stigma experienced by young MSM. Stigma is a fundamental determinant of health inequity that manifests along multiple social domains (e.g., race/ethnicity and sexual orientation) and across multiple disease outcomes (Hatzenbuehler et al., 2013). Therefore, strategies may need to address the intersecting stigmas that young MSM disproportionately experience. Efforts that combat HIV stigma and other social drivers of HIV transmission may be essential for creating environments that contribute to healthy outcomes within this increasingly vulnerable population.
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