Parent study

This analysis is derived from a mixed‐methods prospective, observational cohort study evaluating healthcare transition among youth at a large HIV care center in Atlanta, Georgia, US [21–23]. Between August 2016 and June 2018, 70 participants were recruited from the pediatric clinic within 3 months prior to anticipated healthcare transition to adult care. Participants completed a self-administered baseline survey that included demographic information during their enrollment visit. Participants were followed over the subsequent year with serial surveys and medical chart abstractions in order to determine HIV care continuum outcomes and to examine their experiences throughout this process.

Study design

From November 2020 to February 2021, we recruited a subsample of 20 young adults living with HIV to participate in this qualitative sub-study consisting of one in-depth interview. Inclusion criteria for participants in this study were being 18 years of age or older, English-speaking, and living with HIV. We contacted a total of 53 participants via telephone call or text message who had indicated interest in the parent study in being contacted for follow up studies. Of participants contacted, 29 were not responsive or available to interview, and 4 declined to participate. Enrollment continued until thematic saturation was met (e.g., no new themes or codes were identified). The study team selected participants based on participant availability/interest and a purposive sampling strategy, with specific efforts to include women and young adults with vertically acquired infection to ensure diversity of responses. We adhered to the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines (S1 Appendix) for this work [24].

Ethical statement

We obtained verbal informed consent from each participant prior to engaging in any study activities. Documentation of verbal consent was noted on a form and witnessed by the author obtaining consent (MG) and kept in the participant’s study record. The Emory University Institutional Review Board and Grady Research Oversight Committee approved this study.

Analysis

One English-speaking, doctorate-level, female researcher (author MG) conducted and digitally audio-recorded the interviews, which averaged 1.5 to 2 hours in length. The interviewer had no pre-existing relationship with the participants prior to the study and emphasized confidentiality, openness, and honesty throughout the study. In-depth interviews (IDIs) were conducted and recorded over Zoom, a Health Insurance Portability and Accountability Act (HIPAA)-compliant videoconference platform. Both the interviewer and participants were located in a separate, private room either within their home or office at the time of the interview. The semi-structured interview guide was based on Earnshaw and Chaudoir’s HIV Stigma Framework as well as the theory of intersectionality [9, 10], and included open-ended questions within the following conceptual domains: (1) General Life Questions (including current living and work situations), (2) The Meaning of Stigma, (3) Enacted Stigma, (4) Internalized Stigma, (5) Anticipated Stigma, and (6) Intersectional Stigma. Our study team developed and then piloted the interview guide with two members of a youth advisory board comprised of young Black gay men living with HIV. The guide was iteratively revised based on their feedback. After the interview, participants were compensated with a $40 gift card.

Two analysts (MG and MM) transcribed the interviews verbatim and imported the transcripts into MAXQDA 2020 qualitative software (Berlin, Germany) for coding and thematic analysis [25]. A team-based coding approach was used with four analysts (MG, MM, SM, and RB) to enhance reliability and internal validity [26]. The research team used both deductive codes (e.g., internalized stigma, enacted stigma, and anticipated stigma) based on the guiding theoretical frameworks, as well as inductive codes (e.g., coping mechanisms, barriers to care, and social support) derived from the data to develop the codebook. Analysts then coded a subset of transcripts (N = 4) in parallel and compared the coded text to ensure consistency in application. The codebook was modified through an iterative process, including reading transcripts, recognizing recurring themes, refining code definitions, and discussing differences between coders with the research team until consensus was reached. Once the codebook was finalized, the study team then divided and independently coded the remaining transcripts. Next, we wrote thick descriptions of each theme, which were detailed analytic memos for each code explaining depth, breadth, context, and nuance [27]. Throughout this process, analysts met regularly to discuss emerging patterns and relationships in the data, including comparing the frequency and content of codes and themes. During analysis, we noted that the impacts of different kinds of stigma were described on different socio-ecological levels (e.g., intrapersonal, interpersonal, clinic, and community) [17]; the results below are therefore organized according to these levels.

Demographics

We interviewed 20 young adults living with HIV between the ages of 27 and 29 (Table 1). The mean age of participants was 28.5 years (standard deviation = 0.4 years). Sixteen (80%) participants were male, and 17 (85%) acquired HIV horizontally (see Table 1 for summary of demographics). Most participants identified as Black/African American (19/95%) and gay (15/75%).

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Table 1. Participant demographics.

https://doi.org/10.1371/journal.pone.0289821.t001

Overview of themes

Participants experienced different mechanisms of stigma related to their HIV status and other aspects of their social identities (e.g., race, sexual orientation, and sexual behaviors) in both healthcare and non-healthcare settings. While these were often discussed in isolation during interviews, participants frequently reported experiences in which other forms of stigma occurred together with HIV stigma. These intersecting stigmas were often discussed at different socio-ecological levels, including intrapersonal, interpersonal, clinic, and community levels (Fig 1).

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Fig 1. Conceptual model of intersectional stigma and coping/motivating mechanisms across different socio-ecological levels among young adults living with HIV in Atlanta, Georgia.

https://doi.org/10.1371/journal.pone.0289821.g001

Intrapersonal level

Internalized stigma, and to a lesser extent anticipated stigma, were the main mechanisms operating at the intrapersonal level. Many participants described their experiences with internalized stigma, as they reflected on how their feelings about HIV and their identities had changed over time, largely for the better. Many participants held negative views of HIV prior to their own diagnoses, which for some created an obstacle to engaging in HIV care; consequent feelings of shame and anticipated stigma prevented them from attending clinic appointments and/or taking their medications. As illustrated by the following quote, one participant explained his fears about attending clinic after his diagnosis:

I felt like at that time—again, this is my own ignorance, I felt like HIV had a look. Again, that goes into that stigma. I felt that I could just tell or sense. Also, too, I was very, at that time, very ashamed. I knew what the clinic was. I knew that anybody that walked through that door, had what I had, and I didn’t want to be grouped in that category. I didn’t want to be grouped. I feared not being viewed as an individual… (Participant 7, a 28-year-old male with horizontally acquired HIV)

For several participants, internalized HIV stigma was inextricably linked to internalized homonegativity, and contributed to shame and guilt surrounding their HIV diagnosis. Participants describe how they eventually thought that being both Black and gay, meant that they would inevitably contract HIV:

Within our African American gay community […] one of my friends had said that, "Well, it seems like everybody in our community has it." And you know, at first, I kind of laughed it off, but I had to think about it. It hurt a little bit, because I was like, “well, damn, it does seem like, you know, the African American community is highest at risk.” And every person I’ve met, or, you know, come in contact with or gotten to know, they’ve all been positive, or they just contracted it. It’s something that I don’t necessarily wish upon anybody, and it sucks when, you know, somebody else has to go through the new journey for themselves. It’s kind of just becoming cliché now. (Participant 12, a 29-year-old male with horizontally acquired HIV)

This shame related to confirming stereotypes was common in our sample. In fact, many participants explained that they thought that only gay men had HIV, but after attending clinic and seeing the diversity of individuals living with HIV, they were able to change their own assumptions and reduce internalized stigma. For example, one participant asserted that now, as a person living with HIV, he is able to humanize other people living with HIV:

…Before it was like oh "person XYZ has HIV" or "person XYZ died of AIDS" and like, you never could relate them to a person. But to actually have [HIV], then it’s like “oh you’re just a regular person.” You wake up. You go to sleep. You just take a pill every day like a daily vitamin…It’s not so like, "I don’t want to touch them;" "I can’t eat behind them;" "I can’t go to their house and eat with the fork that they have." It’s more humanistic to me to see [others living with HIV] and to actually live with it. (Participant 3, a 28-year-old male with horizontally acquired HIV)

Reaching acceptance of one’s own HIV status (i.e., decreasing internalized self-stigma) was described as facilitating several participants’ medication adherence and clinic attendance. One participant, for example, explained how individuals should let go of any shame they may feel about living with HIV or how it was transmitted in order to accept their diagnosis and improve their medication adherence:

Do not be ashamed of [HIV]. Do not be ashamed of however you got it. If you got it by drugs or unprotected sex, don’t be ashamed of it. However, you got it, you now have it. However you got it, accept it. Don’t cry if you have it; It’s not going to go away. It’s not going to go away by crying […] It’s important to accept you have it and just take your medication, so [you don’t get sick]. (Participant 19, a 28-year-old female with vertically acquired HIV)

Interpersonal level

Enacted stigma was the most commonly described mechanism at the interpersonal level, including among familial relationships, peers, coworkers, and intimate partners. Several participants described how individuals living with HIV were labeled as “dirty” and “promiscuous.” When asked about how her family viewed HIV, a participant whose family were recent immigrants from Africa explained:

It’s just you look different. You’re shunned. Just being an African person, the way you look at it is just, “How’d you get it? You’re a dirty person. You must have been a loose girl.” A loose girl is like you’re promiscuous. So that’s [why] my mom was very secretive when she found out that I had it. She was very secretive until her death. (Participant 19, a 28-year-old female with vertically acquired HIV)

Similarly, stigma was at times enacted as rejection from potential and current intimate partners due to HIV status. Knowing their friends and family’s negative views of HIV, led to a fear of disclosure for some participants, including to family, friends, and intimate partners. One participant explains that given his experiences with homonegativity from family members, he has had difficulty disclosing his sexual orientation and his HIV status:

I’ve had a family member who had it. It was just strictly AIDS back then and he passed away from it, so I honestly felt as though my family was looking very down on gay people and like “it’s nasty and you shouldn’t do that.” They didn’t like gay people. During my teen years, it was very hard to just kind of come out and be comfortable with just being gay. But also, just having [HIV] on top of it, it took a toll, so I decided to only just let a select few people know. (Participant 15, a 28-year-old male with horizontally acquired HIV)

Again, stigma related to sexual orientation was often linked to HIV stigma, as illustrated by the following quote:

A bad experience is like when I first came out as being gay. My family labeled me as somebody that would die from HIV. (Participant 3, a 28-year-old male with horizontally acquired HIV)

Similar experiences were described frequently by multiple participants. In contrast to stigma operating at other ecological levels, participants were less likely to explicitly describe direct links between these interpersonal stigmatizing experiences and HIV care engagement.

Clinic level

Stigma within healthcare settings was discussed at length by our participants, including both enacted and anticipated stigma.

Community level

Experiences with enacted stigma were extensively described at the community level throughout the participant interviews, who specifically described harmful community norms and views relating to HIV and sexuality expressed by various groups and institutions including employers, community leaders, religious community, and within the media. Several participants expressed their view that the Black community in particular views same-sex behavior as being synonymous with HIV.

I felt stereotyped, if I should say, because, you know, in a Black community, like in the straight Black community, you know, especially with older people in church, that’s what they think. They think, oh, you’re gay, you’re gonna have AIDS. (Participant 2, a 28-year-old male with horizontally acquired HIV)

Similarly, many participants described how people in their communities associate HIV with stigmatized sexual behaviors and promiscuity. This finding echoed discussions of stigma experienced at the interpersonal level. When asked how HIV is viewed in his community, participant 1 (a 28-year-old male with horizontally acquired HIV) explained:

Kind of like leprosy. Kind of like something nasty. Assumptions are made about your sexual escapades and how you conduct yourself. A lot of that is based on your HIV status. I hear the term ‘clean’ used a lot and that used to sting because I’ve never been someone who was promiscuous.

Coping and motivating mechanisms

Participants described motivating factors and strategies for coping with different types of stigma related to their HIV status, race, sexual orientation, and/or sexual behaviors, including prioritizing one’s health, social support, and affirming experiences with the medical care team.

Limitations

While we intentionally made efforts to include young adults with vertically acquired HIV, as well as women, the majority of participants in the parent study (and thus in our substudy as well) were young Black men with horizontally acquired HIV. Larger numbers of participants from other groups (e.g., cisgender women, adolescents and young adults with perinatally acquired infection) might have yielded additional types of experiences or narratives relating to intersectional stigma. However, our study population distribution is reflective of US epidemiology, as young Black gay, bisexual and other men who have sex with men bear a disproportionate burden of HIV relative to other groups [50]. It is also important to note that individuals who agreed to participate in our study may have different experiences with stigma from those who did not. That is, those who had higher internalized stigma or less effective strategies may have been less likely to want to participate in HIV-related research. Additionally, researchers’ personal beliefs or preconceived notions may unconsciously have shaped their observations or conclusions when interpreting participant’s responses. In order to minimize this limitation, we intentionally had multiple study team members from different backgrounds independently code transcripts, establish inter-coder reliability and discuss interpretation of findings.