A Qualitative Examination of Stigma Among Formerly Incarcerated Adults Living With HIV

Conceptual Framework

Scholars have identified three distinct mechanisms through which HIV-related stigma is experienced: internalized (e.g., feeling ashamed, dirty, or unclean), anticipated (e.g., expectations of being shamed, rejected, or discriminated against), and enacted (e.g., actual rejection or discrimination; Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013). Research has shown that all three stigma mechanisms are an issue for HIV-positive individuals involved in the criminal justice system, and each can be a barrier to HIV care (Haley et al., 2014). In a qualitative examination of the post-incarceration linkage-to-HIV care experiences of participants in a case management randomized trial, Haley and colleagues (2014) found that participants discussed both anticipated and enacted stigma as barriers to engaging in HIV care. Specifically, participants experienced HIV-related and criminal history–related stigma in the forms of rejection by family and friends, loss of employment, and harassment. As a result of both anticipated and enacted stigma, participants did not seek HIV-related services due to stigma-related fear or shame (Haley et al., 2014). Literature has also shown that, in addition to avoidant behavior, not disclosing one’s HIV status can lead to enhanced stress and mental health disorder, which may in turn worsen physical health (Bogart et al., 2011; Chaudoir, Fisher, & Simoni, 2011; Derlega, Winstead, Gamble, Kelkar, & Khuanghlawn, 2010).

Building on this literature and using the three conceptual mechanisms of HIV stigma as a framework, this analysis seeks to explore how the individuals who participated in a larger qualitative study examining the barriers and facilitators to continuous HIV care for adults with a history of incarceration manage the multiple identities that are typically stigmatized in contemporary U.S. society: Do they perceive themselves as having a stigmatized status? What are the situations or contexts within which a particular status or identity becomes more salient to them? Understanding the role of stigma in these individuals’ lives can help scholars and practitioners understand the challenges these individuals face to assist them in overcoming the barriers to effective care and better health.

Analysis

Coding and analysis were approached with a mixture of deductive and inductive coding (Corbin & Strauss, 2008). Specifically, master codes (Corbin & Strauss, 2008) were created using the three stigma mechanisms of the conceptual framework as well as inductively from the interview transcripts. Secondary coding consisted of developing sub-codes (Corbin & Strauss, 2008). These sub-codes allowed for more detailed and nuanced coding within the master codes. Coding and analysis continued until saturation was reached or no new information was being discovered and codes were no longer being developed (Corbin & Strauss, 2008). Following preliminary coding, a second phase of analysis focused on refining the codebook, cleaning the coding of the transcripts, and ensuring that earlier transcripts were coded with codes developed from later transcript. Throughout analysis, memos were used to document the researcher’s own reflections and to organize patterns of findings within and across interviews. Codes and memos were then utilized to uncover patterns of interconnectivity within the data to bridge the concepts into dominant themes in the final stage of analysis.

Anticipated HIV Stigma

The anticipation of HIV-related stigma was pervasive among this study’s participants. Often, the anticipation stemmed from the individual’s own stigmatizing attitudes toward people living with HIV. For instance, Storm (pseudonym), a Black woman in her 40s admitted “when I didn’t have [HIV] and I used to see people [who looked sick] and I’d be like ‘hmmm . . . I don’t want that around me.’” Thus, participants “knew” that others must hold those same beliefs about people with HIV and so anticipated a stigmatizing response should others find out that they had HIV. One participant noted that although it was not directed at her, she had witnessed stigmatizing attitudes toward others with HIV:

I was at somebody’s house, or apartment in town, and uh, somebody had come in and used the bathroom. And they didn’t stay long, they left. And, after they left, somebody made the comment, hey man you better go in there and use some fuckin bleach on that toilet seat. That bitch has got the shit. And, uh, I was like, “God. That’s real fucked up.” ’Cause they didn’t know I was sick. (Pine, 47-year-old White woman)

The witnessing of these stigmatizing attitudes and the anticipation of being at the receiving end of the stigma prevented participants from disclosing their HIV status to others. When asked whether he told people when he was diagnosed with HIV, Olive, a Black 57-year-old man, responded,

No I didn’t. I kinda kept it to myself. You know what, society is, even though you hear more and more on the radios and the TV commercials and this and that and the other, people tend to act like if I touch you, you gonna get sick or something. I mean, they’re not really ready for it . . . it’s gradually getting there, but it’s not there yet. Ignorance is just, you know, it’s just terrible.

This relationship between anticipated stigma and disclosure of HIV was highlighted when Olive was asked whether he had experienced people reacting in a stigmatizing way when he told them he has HIV. He replied,

Well, not to me, but I see . . . you never know who’s listening to what, so you tend to listen to people’s conversations without really getting involved in it, and you can hear the negativity . . . I don’t even bother.

Context: Social Interactions

In some contexts, stigma related to HIV infection was the most salient. Participants were careful to note that in certain contexts, disclosure of their HIV status was not necessary and not worth the risk of being stigmatized. For example, when discussing whether to disclose her HIV status during a drug and alcohol treatment group session, Lemon stated, “I didn’t wanna share it. It’s not . . . you know? It’s not their business. I’ve been judged enough for it. You know? I’m not putting ’em in any harm or at any risk, so why [disclose]?” Some participants also noted that anticipated stigma in the prison setting would prevent them from disclosing to other inmates:

When I was in [jail] for my two weeks, when I was going through the process of getting my [HIV] medication and everything . . . they was calling me down [to the] medical [unit] so much, people was asking me like, “what’s wrong wit [you]” and I just wouldn’t, I didn’t want to tell ’em because I felt like um, that’s none of their business and I don’t want them talking about me, whatever. (Neon, 31-year-old Black woman)

In most contexts, participants were mindful of keeping their health issues to themselves and therefore tended to disclose their HIV status to only a few people, particularly intimate partners, children, and/or close family members or friends. Everyone interviewed said they had disclosed their HIV status to at least one person.

Given participants’ hesitance to disclose their HIV status for fear of a stigmatizing reaction, many of them were surprised that when they did disclose, rather than being stigmatized, they were received warmly, accepted, and supported. For example, when Gold, a 42-year-old White woman told her mother that she had HIV, she was met with acceptance and support,

My mom just like took it with like open arms. She wasn’t like, “I don’t want nuttin’ to do witchu, I don’t want you drinking outta my glasses, I don’t want you . . . ” Nothing. My mom was just like, “I wanna take care of you when you get sick.”

Likewise, Sunshine told his wife and an aunt who he was close to:

[I told] my wife. Well she was my girlfriend then, but yeah I told her. She said, “well, just we gon take care of this. We gon do what we gotta do to survive.” You know. [I had] somebody in my corner. And I told my aunt. And she said “well do what you have to do to survive” and I said “yeah.” You know. And she called me, “how you doing? You make your appointments?” “Yes, ma’am.” You know. And she was there for me.

At worst, many participants found they were met with indifference. For example, when Tan, a White woman in her late forties, was asked how her family responded when she told them she had HIV, she simply stated “they didn’t treat me no different.”

Some participants said that their honesty even led to heightened respect from the person they were disclosing to: “I’ll let anyone know. You know. ’Cause it helps me. And it makes me stronger. You know. And then I get the upmost respect from people for being honest and being outspoken about it” (Sage, 52-year-old Black woman). As another example, Gold was nervous to tell her boyfriend because she feared he would reject her, but when she did tell him, she was surprised at his acceptance,

I should have told [my boyfriend] though, and I didn’t. Because I loved him, but I didn’t . . . I knew he would reject me, or wouldn’t love me if I told him, you know? And that wasn’t true, because he loved me more after I told him.

An exception to this finding was among individuals who were diagnosed with HIV in the late 80s or early 90s; these participants reported having experienced stigmatizing interactions when they were first diagnosed, but they were careful to note that things have changed. This finding is illustrated well in the following quote from Sage, a woman who was diagnosed with HIV in 1982:

Back then is when people didn’t really understand what was going on [with HIV]. My family had to go through the whispering and hiding [my] plate, my forks and stuff. I’ve seen all that. Everybody trying to hide it . . . [But that has changed]. Now, I can tell . . . I talk to anybody about [my HIV infection]. Now I’ll let anyone know [that I have HIV].

However, for a couple participants, stigmatizing reactions were still an issue in the first decade of the 21st century. Red, who was diagnosed in 2007 said “A lot of things they was doing that was hurting me, like you know I can’t wash my clothes with theirs, I had to . . . use my own toothpaste, use my own soap.” Also, Pine, who was diagnosed in 2000 noted that “people ask me, ‘can I get [HIV] if I smoke after you’ . . . [and] ‘my dad asked me if he could get it if he kissed me.’”

Context: Employment

Consistent with the literature, in other contexts, such as applying for jobs, participants’ criminal records topped the salience hierarchy for stigmatizing attributes. As Neon stated, “employers look at you and be like, oh she got something on her record and I really don’t want her working here.” Participants’ HIV status was less of a concern because potential employers “didn’t know” or “didn’t need to know” about their HIV. Instead, their criminal records were cited as much more salient issues than HIV. Silver, who noted that his criminal record was a concern for seeking employment stated, “HIV-positive, jobs don’t look at that because you don’t tell them that you’re HIV-positive.” Likewise, Navy indicated, “I ain’t really tell [employers] about my HIV . . . But my criminal record, you know, was kinda screwed. A lot of jobs do [a] background check.”

An exception to the salience of a criminal record over HIV infection with respect to employment was participants who worked in the food industry. For them, working with food heightened the salience of their HIV infection:

I just got to make sure I don’t get cut, I make sure that I do what I suppose to do. That’s the main thing. Not getting cut. No open wounds while I’m handling food. If I got a cut on my hand, I can’t handle no food. But if I don’t got no cut? I’m good.

For some participants, the uncomfortableness of working around food because of their HIV status prevented them from seeking that work. For instance, Grey, a Black man who struggles with depression noted,

Now [that I have HIV] I can’t do what I . . . I’m not working, it’s depressing. I love cooking. I had a passion for cooking. I still do. But, I don’t like being around, I can’t be around you know, open food like that like I really want to. You know I mean. Because you know, dealing with I might get cut, dealing with knives or anything, you know, or any type of thing. You know, I’m very careful because . . . I don’t wish [HIV] on my worst enemy.

Context: Engagement in HIV Care

Occasionally, the interplay of stigma related to both HIV and a criminal history created barriers to engagement in health care. Although a referral to the HIV program from Department of Correction reentry planners could potentially assist individuals returning home from incarceration in overcoming some of the challenges to reestablishing their lives in the community, knowing where to go for HIV care does not necessarily ensure that the individual will indeed connect to care. An unanticipated, though not surprising reason why people would not show up for care, even if they were referred by the prison or even had an appointment scheduled, was because of a stigma surrounding the building that the HIV clinic is housed in. For example, Magenta avoided treatment at the clinic at first and received HIV care from her private doctor. When incarceration interrupted her private insurance, however, she had to start going to the HIV clinic for treatment, but felt ashamed:

First off, I didn’t want to come here. I wanted . . . I had my own private doctor ’cause I was on Medicaid at the time. But, eventually I had to start coming here for my treatment. And I was kind of ashamed because it’s like public. More people that come here for . . . and, just seeing numerous people that I see every day that I would never thought had it.

Likewise, Spruce avoided HIV treatment for many years because she was embarrassed to be seen at the building where the HIV clinic is located:

And then when they see you come here, they know you got HIV, so. I used to be like, I’m trying to come in here, sneak in here . . . everybody in town knows . . . you walk in here, when you come in here, people know that you have HIV too.

One respondent, Lemon, had actually initiated care at the HIV clinic but ended up stopping her HIV care at one point because of her perception of the stigma surrounding the building, “For a little while, a couple years ago, I stopped taking meds. It was too embarrassing to come into the clinic . . . walking in somewhere and people knowing that you have HIV is just humiliating.” These quotes suggest that there is a perception that the actual building that the HIV clinic is housed in is the “HIV building” even though other services, such as family medicine and women’s health, are housed in the same building. This perception is explicitly stated by Spruce when she says, “Everybody knows what this building is . . . they just know that people come here to get taken care of with their HIV.”

The HIV clinic services a large number of patients who are involved in the criminal justice system. Because of perceived stigma regarding her criminal justice status rather than her HIV status, the public nature of the HIV clinic had an interesting effect on Gold, a 42-year-old White woman who had already been a patient at the clinic when she was most recently incarcerated prior to her interview. At the time of her most recent incarceration, she was also pregnant. Because of her pregnancy, the doctor at the clinic requested that the prison allow her to be seen at the clinic so that they could continue to manage the care she had been getting prior to her incarceration:

I was in jail at the time when I was pregnant. And they ordered me to come here, [the clinic’s doctor] did. Because [the doctor] knew I was HIV-positive. And they wanted me to take the medicine while I was pregnant with him. And I was shackled and handcuffed walking through that door right there. I was so mad. [laughs] And the reason why I was mad, I don’t think it was so much mad, I think I was embarrassed ’cause everybody seen me.

Although it is encouraging that the community program was enforcing continued care through one of their patients’ incarcerations, Gold was embarrassed because “everybody saw” that she was involved with the criminal justice system. In contrast, Magenta, Spruce, and Lemon were embarrassed about showing up at the clinic because it would announce their HIV infection. Yet, given the nature of the clinic’s patient population, Spruce noted, “I’ve seen like three other women that we was all locked up together.” Thus, by connecting to care at the clinic, she (and the others) risked exposure of her HIV status to people she had been incarcerated with, and may potentially be incarcerated with in the future.

Intersection of Additional Statuses

Finally, due to the overlapping nature of stigma around multiple identities that often co-occur (e.g., HIV, drug use, criminal justice involvement), the anticipation of stigma sometimes worked in the reverse direction; by nature of their HIV infection, some participants feared they would be labeled as an addict or were worried about being labeled as homosexual even though they did not identify with those statuses. For example, Sunshine, a 48-year-old Black man explained how prior to his HIV diagnosis, he stereotyped people with HIV as being homosexual, “’Cause at first I was naïve to it too, before I was diagn[osed]. [I thought] ‘man they must be a homosexual.’ I’d stereotype too until then when [HIV] hit me and I said, ‘now I know I’m not [homosexual].’” Having held this stereotype previously, Sunshine was hesitant to disclose his HIV status for fear that others would stereotype him that way. Participants experienced further stress when they anticipated stigma for a status they did not consider themselves to hold:

If I had cancer, people would be so much more compassionate. ’Cause I have AIDS, um, they automatically look at you that, you know, you’re a druggy. And face it. Look at me. You know? I was never a big woman to begin with. So um. That sure didn’t help me. Um, I look like I’m on drugs. And I’m not! Heh. And uh, [fighting off crying] . . . it just makes it harder. [crying]. You know? ’Cause, people are cruel! They’re really cruel. (Pine, a 47-year-old White and Native American woman)

Limitations

Despite the attempt to capture diversity in experiences, there are still some sample limitations of this study with respect to the diversity of knowledge gained about the experience of stigma among HIV-positive adults. This was a small convenience sample from a single location. Moreover, all but one participant were receiving HIV care at the time of the interview, restricting the ability to draw conclusions about the role of stigma among individuals not receiving treatment. However, individuals who were already linked to care were able to provide information regarding the factors involved in some of the barriers and struggles to continuity of care that this population experiences and, importantly, techniques they used or circumstances that allowed them to overcome these problems and become engaged in care. In addition, participants in this study only resided in an urban area. Thus, differences in experiences of stigma based on geographic setting were not captured. Also, only two self-identified Latinos and one self-identified Native American participated in the study, which limited the amount of information that was learned about additional experiences of stigma among minority ethnic groups.