Intersectional stigma among people transitioning from incarceration to community-based HIV care in Gauteng Province, South Africa

Abstract

Background.

People transitioning from incarceration to community-based HIV care experience HIV stigma, incarceration stigma, and the convergence of these stigmas with social inequities.

Objective.

To understand intersectional stigma among people returning from incarceration with HIV in Gauteng Province, South Africa.

Methods.

Qualitative interviews were conducted with 42 study participants. We analyzed transcript segments and memos from these interviews.

Results.

Anticipated HIV stigma increased participants’ difficulty with disclosure and treatment collection. Incarceration stigma, particularly the mark of a criminal record, decreased socioeconomic stability in ways that negatively affected medication adherence. These stigmas converged with stereotypes that individuals were inherently criminal “bandits.” Male participants expressed concerns that disclosing their HIV status would lead others to assume they had engaged in sexual activity with men while incarcerated.

Conclusions.

AIDS education and prevention efforts will require multilevel stigma interventions to improve HIV care outcomes.

Background

Transitioning to the community from incarceration represents a point of vulnerability for people living with HIV. Despite high rates of HIV treatment initiation and retention within detention facilities, individuals’ linkage to community-based clinical care and adherence to antiretroviral therapy (ART) are sub-optimal in the weeks and months following release (Iroh, Mayo, and Nijhawan 2015; Loeliger et al. 2017; Baillargeon et al. 2009; Baillargeon et al. 2010; Rich et al. 2016; Mabuto et al. 2020). A complex set of behavioral and social factors constrain HIV care engagement among reentrants. Among these are the combined and separate effects of substance use, mental illness, and housing instability (Binswanger et al. 2011; Milloy et al. 2011; Zelenev et al. 2013; Swan 2015); lack of social support (Rozanova et al. 2015; Pettus-Davis et al. 2009; Bracken et al. 2015); and socioeconomic instability, which across multiple contexts is shaped by social inequities such as structural racism (Bailey et al. 2017; Wildeman and Wang 2017; Golembeski and Fullilove 2005; Bowleg and Raj 2012; Dumont et al. 2012; Rich et al. 2016; Mqedlana et al. 2019; Muntingh 2013; Coovadia et al. 2009; Mayosi and Benatar 2014).

Underlying all of these factors’ influence on reentrants’ HIV care engagement is stigma, a process of exclusion rooted in broader social inequities (Parker and Aggleton 2003; Hatzenbuehler, Phelan, and Link 2013; Goffman 1963; Kemnitz et al. 2017; Haley et al. 2014; Swan 2016; Brinkley-Rubinstein and Turner 2013; Brinkley-Rubinstein 2015; Dennis et al. 2015; Sun et al. 2018; Rice et al. 2018). Previous research has exposed how various HIV stigma processes affect both care engagement and factors known to influence care outcomes among reentrants. Anticipated HIV stigma – the expectation of being excluded because one has HIV – increases reentrants’ fear of HIV disclosure and contributes to avoidance of medical appointments (Swan 2016; Kemnitz et al. 2017; Haley et al. 2014; Brinkley-Rubinstein and Turner 2013). Enacted (directly experienced) HIV stigma, such as harassment from family and friends, decreases reentrants’ levels of social support (Swan 2016; Kemnitz et al. 2017; Haley et al. 2014; Brinkley-Rubinstein and Turner 2013). Internalized HIV stigma (belief in the legitimacy of HIV stigma) is associated with increased depression and substance use (Swan 2016; Kemnitz et al. 2017; Haley et al. 2014; Brinkley-Rubinstein and Turner 2013).

Other studies of HIV stigma have explored reentrants’ experiences of intersectional stigma (Turan et al. 2019), or the convergence of multiple forms of stigma and discrimination (Turan et al. 2017; Turan et al. 2019; Chambers et al. 2015; Henkel, Brown, and Kalichman 2008; Swan 2016; Brinkley-Rubinstein 2015; Brinkley-Rubinstein and Turner 2013; Sun et al. 2018; Rice et al. 2018; Monteiro, Villela, and Soares 2013). Among reentrants with HIV, HIV stigma operates in conjunction with incarceration stigma, or the stigma of having been sentenced and detained for lawbreaking (Kemnitz et al. 2017; Haley et al. 2014; Swan 2016; Brinkley-Rubinstein and Turner 2013; Brinkley-Rubinstein 2015; Dennis et al. 2015; Sun et al. 2018; Rice et al. 2018). These experiences of both HIV stigma and incarceration stigma converge with social inequities, such as structural racism. One study among African American men with HIV and histories of incarceration found that participants’ experiences of internalized stigma were inseparable from their internalizations of racist ideologies prevalent in the U.S. about “dangerousness” of African American men (Brinkley-Rubinstein 2015). Racist ideologies also operate systemically in ways that compound the exclusion experienced by reentrants (Schnittker and John 2007; Schnittker and Massoglia 2015; Brinkley-Rubinstein 2013). For example, an audit of job applications reporting criminal records in the U.S. found that the negative effect of a criminal record on callbacks was 40% larger for Blacks than for Whites, despite the job applications being matched in all respects except for applicant race (Pager 2003).

South Africa is an important site for studying experiences of intersectional stigma among people leaving incarceration with HIV. Some 23% of incarcerated people in South Africa are living with HIV (SANAC 2017), among the highest rates globally (Dolan et al. 2016). As elsewhere, a large proportion of people in South African incarceration facilities initiate ART while detained and are then lost to follow-up from HIV care upon release (Davies and Karstaedt 2012; Telisinghe, Charalambous, et al. 2016; Telisinghe, Hippner, et al. 2016; Mabuto et al. 2020). HIV stigma processes are known to impede care engagement among people with HIV in South Africa (Dos Santos et al. 2014; Treves-Kagan et al. 2017; Earnshaw et al. 2018), and people with detention histories in South Africa experience incarceration stigma in the form of criminal records that either directly prohibit or effectively exclude them from employment for up to ten years (James 2016; Muntingh and Naude 2012; Muntingh 2011).

HIV stigma and incarceration stigma experienced by reentrants with HIV also converge with multiple different stereotypes about people returning from detention facilities in South Africa (Steinberg 2005; Gillespie 2008, 2007; Steinberg 2004; Super 2010a; Wilson 2001; Super 2010b). One such stereotype, the construction of incarcerated people as bhantinti (“bandits”), results from the early post-apartheid government’s granting of amnesty for people detained lawbreaking adjudicated as political, a process which reconfigured individuals who remained incarcerated as “pure criminals” (Super 2010b; Simpson 2004; Gillespie 2007; Wilson 2001). South African incarceration facilities are moreover commonly represented in the country’s popular media as hotbeds of physical violence and sexual activity—including forced, transactional, and consensual sex—in particular between men (Gear 2010, 2007; Gear and Ngubeni 2002). In addition to stereotypes of formerly incarcerated people as “pure criminals,” then, reentrants are often subject to assumptions about in-facility experiences with violence and same-sex sexual activity.

Multiple forms of stigma and discrimination converge to influence both care engagement and the factors known to influence care among reentrants with HIV. Better understanding these experiences of intersectional stigma will improve HIV prevention and education efforts focused on destigmatizing HIV, increasing medication adherence and linkage to care, and promoting treatment-as-prevention (TasP) to block the onward transmission of HIV. In this paper, we seek to understand experiences of intersectional stigma among reentrants with HIV in Gauteng Province, South Africa.

Methods

Sampling

We recruited 42 reentrants living with HIV between October 2017-September 2018 in Gauteng Province, South Africa. Participants, who were already part of an existing post-release care linkage study (Mabuto et al. 2020), were purposively sampled to achieve maximum variation in terms of the characteristics outlined in Table 1, including age, gender, place of HIV diagnosis, place of antiretroviral therapy initiation, and HIV status disclosure at time of release from detention facility. Our study was approved by the Institutional Review Boards of the University of the Witwatersrand and the Johns Hopkins School of Medicine. All interview participants provided written informed consent. Participants were reimbursed for transport costs and provided with a nominal incentive (ZAR50).

Table 1.

Participant characteristics^*

N	42
Age group
<25	5
25-49	32
>49	2
Gender
Male	33
Female	9
Place of HIV diagnosis
Correctional center	28
Outside correctional center	12
Place of antiretroviral therapy initiation
Correctional center	28
Outside correctional center	11
Disclosed HIV status to family or friends outside correctional center
No	14
Yes	28

^*Participant data not complete for all variables

Data Collection

Interview participants were contacted by phone with information about the interview and a request to participate. Interviews were conducted by one of the first two co-authors and, in one case, a trained research assistant; the first author conducted the last 11 interviews. Interviews were conducted in participants’ language(s) of choice (English, isiZulu, isiXhosa, or Setswana), with assistance from a translator when needed. Participants were interviewed in private locations such as office spaces or their homes, according to their expressed preferences.

Interviews followed a semi-structured topic guide that was adapted from a previous guide on this topic (Swan 2016). The guide explored experiences with intersectional stigma through questions about participants’: experiences with disclosures of both HIV status and incarceration history; expected and experienced reactions from others to these disclosures; individual feelings about HIV status and incarceration history; and, effects of these experiences and feelings on care engagement. All interviews were audio recorded, and researchers took notes during interviews and wrote memos afterward about interview contexts. Interviews were transcribed in English, with non-English interviews simultaneously translated and transcribed into English by study team members. Final transcripts and interview memos were imported into the computer-assisted qualitative coding software MAXQDA (VERBI GmbH, Berlin).

Data Analysis

We conducted qualitative data analysis in which we inductively developed a series of foreshadowed problems to guide our reading and coding of transcripts, writing of memos, and sorting and synthesizing of memos. First, three co-authors read transcripts from the interviews and wrote memos about initial impressions and reflections. The co-authors then used five transcripts to generate and iteratively refine first-cycle codes, including codes related to HIV stigma, incarceration stigma, and a range of other emergent analytic concepts (e.g., “socioeconomic instability”). After final consensus on codes was reached, two co-authors applied the codes to the transcripts. The first author then: retrieved coded segments from the interviews related to HIV stigma, incarceration stigma, and these codes’ intersections; summarized coded segments into text (Ziebland and McPherson 2006); and, explored similarities, differences, and patterns within and across these summaries. This last step consisted of searching for themes, reviewing themes in relation to coded extracts and the entire dataset, defining and naming themes, and writing up final summaries of themes (Clarke and Braun 2014). Throughout this process, the first author wrote analytic memos related to how participant experiences differed according to characteristics outlined in Table 1, in particular place of HIV diagnosis, place of ART initiation, and status of HIV disclosure at time of release. Due to a limited exploration of women’s experiences with intersectional stigma during data collection, analyses of differences in participant experiences did not focus on gender. The first author wrote and reviewed reflexive memos about perceived interviewer effects related to visible/audible characteristics (race, gender, nationality) and about his personal decision-making about what to emphasize and exclude (Moradi and Grzanka 2017). Quotations were selected for inclusion in the final written results on the basis of their representativeness of key themes. Two participants’ stories were selected for detailed description as “typical cases” to illustrate the inter-weaving of multiple stigmas and stereotypes within many participants’ post-release life experiences (Teddlie and Yu 2007).

Results

The sample included participants from a range of age groups and overrepresented women in proportion to the overall gender ratio among people in detention facilities in South Africa(DCS 2015) (Table 1). Most participants were diagnosed with HIV in correctional facilities and initiated treatment while incarcerated. One third of participants had not disclosed their HIV status to outsiders at the time of release from incarceration.

Anticipated, enacted, and internalized HIV stigma

Participants described experiencing various HIV stigma processes upon release. Many spoke of anticipating HIV stigma. As one 40-year-old man said, “I stressed myself when I came out. I’ve got HIV. People will start talking about me.” Anticipation of HIV stigma increased the difficulty of disclosure to family, friends, and sexual partners. “Especially the family circle. You cannot reveal your status to such people,” said another 40-year-old man. Elaborating on why he feared to disclose his status to family, a 39-year-old man spoke evocatively of anticipating antipathy: “[Some family members] are not people that you can tell that you are HIV-positive because they will hate you.”

Further describing experiences of anticipated stigma, multiple individuals spoke of dreading to collect treatment from public clinics because their status might be involuntarily disclosed while doing so and others might judge them. As one 40-year-old woman said of the experience queuing to collect antiretrovirals, “There’s long lines when we’re fetching the treatment and somehow you feel like people are talking about you.” Another 41-year-old man disguised himself in a health worker uniform to avoid being identified as having HIV when collecting treatment from a public clinic.

Several participants described experiencing direct enactments of HIV stigma. Gossip about the source of one’s infection; disparaging remarks such as calling individuals or people living with HIV sick, dying, or promiscuous; and in some cases others’ unfounded fears of infection (e.g., from sharing glasses, utensils, or mascara) were all examples of enacted HIV stigma recounted by participants.

Few spoke of experiences of internalized HIV stigma; more often, participants spoke of maintaining resilience against stigmatizing beliefs about HIV. Themes of positive self-talk permeated participants’ characterizations of this resilience. “As long as I’m living my life, I don’t care what you are saying about me,” said a 33-year-old woman. “I know what I’m saying about myself—that’s all that matters.”

Incarceration stigma

Participants frequently described the deleterious effects of criminal records on their socioeconomic stability. Having a criminal record often prevented individuals from being hired or securing funding for small businesses. Incarceration “ruined my fingerprints…it has ruined my life,” said one 51-year-old man, referring to the use of fingerprint-matching technologies in background checks by prospective employers. Many never gained employment, and some had all but given up on seeking jobs because of criminal records that effectively guaranteed their exclusion from the labor market.

Without a regular source of income, participants often relied on family members for assistance with meeting basic needs such as housing and food. In some cases, families provided this support; in others, family support was limited or altogether absent. “They were not friendly people when I came back from prison,” said one 29-year-old man of the family with whom he returned to live. A 32-year-old man, exemplifying the mixture of care and rejection that many reentrants reported, shared, “I live in a house but I don’t get a plate.” Reasons for being denied social support ranged from estrangement from family members because of having been incarcerated to household members believing participants were not contributing enough to expenses to merit the sharing of material goods.

Several individuals were rejected outright from their families’ homes and forced into conditions of extreme poverty characterized by frequent hunger. As one 39-year-old man shared, his aunt evicted him after his release, and he then moved into an informal settlement where he resided in a shack until he could gather the money to build his own dwelling. Some living in conditions of poverty described not adhering to medication because of not having enough to eat. A 40-year-old man, who said he sometimes ate just two slices of bread in a day, said the pain of taking treatment on an empty stomach led him at times to lapse from his antiretroviral medication: “There’ll feel like there’s ashes in your stomach, and all those things. And then you start turning a blind eye towards, now, your treatment.”

Sandile’s story

One participant’s experience illustrates the ways both HIV stigma and incarceration stigma co-occurred in many individuals’ post-release life experiences. “Sandile” (a pseudonym), is a 39-year-old man who both was diagnosed with HIV and initiated treatment while incarcerated. Upon release Sandile described anticipating HIV stigma from family members, to whom he chose not to disclose his status. “I know they’ll judge me,” he said. To avoid being seen by community members when collecting treatment, he traveled to a clinic outside his catchment area. Though he did not experience enacted HIV stigma toward himself, he said that people in his community often spoke disparagingly of people living with HIV. “‘We don’t want you near us,’” he said community members might say to a person living with HIV.

Sandile moreover described how the stigma of incarceration created conditions of socioeconomic instability in his life that led him to at times take medication without adequate food. After returning to his community, Sandile lost his job and was able to gain only piecemeal work. At first he lived with his aunt, but she locked away food to keep him from accessing it. “So I had no choice. I had to move,” he said. He took up residence with his younger siblings, who lived in an impoverished area. His siblings were willing to share food with him but were at times unable to afford it. Asked if he ever stopped taking treatment because of not having enough to eat, Sandile said he was adherent but at times had to take his treatment on an empty stomach. “I rather take tablets with water only. Or maybe put a lot of sugar [in the water],” he said.

Convergence of stigmas with stereotypes about people returning from detention facilities in South Africa

Participants’ experiences of stigma converged with broader stereotypes about people returning from detention facilities in South Africa. Several spoke of either being called or fearing to be called bhantinti (bandit), which they described as a derogatory term for people who had been incarcerated. As one 40-year-old woman said:

Remember, when you come out of prison there’s this thing that you feel like you will be called a bandit. Because previously I think that the convicts were known to be very bad people.

In other words, this participant’s return from incarceration brought with it fears that she would be stereotyped as an inherently “bad” person, a “bandit” with an underlying immoral disposition. “‘Once a bandit, always a bandit,’” the same participant described others in her life as saying.

Several added that it was the fact of having been incarcerated, even more so than the crime for which a participant had been sentenced, that marked an individual as immutably “criminal.” A 41-year-old man emphasized this point when saying that formerly incarcerated individuals who had committed lesser infractions were stigmatized just as much as those incarcerated for graver ones:

People are scared of you, regardless of the reason why you were imprisoned….Children do not play close to you, even if you were not arrested for rape or murder, they are told, ‘Do not go to that person. He is not right.’

To this participant and others, community members’ association of incarceration with being a “criminal” pathologized all reentrants. “I am not a criminal anyway,” said another 40-year-old man. “But once you go to prison, once you put on that uniform, you are just like them, you understand?” A history of incarceration painted any individual who experienced it with a broad brush.

Several male participants spoke of experiencing HIV stigma and incarceration stigma converging with others’ assumptions about incarcerated men experiencing physical or sexual violence, engaging in sexual activity, and/or being infected with HIV while detained. One 27-year-old man spoke of feeling he had a mark on his forehead indicating “something within you that is wrong from prison.” He said he felt people stigmatized him in this way because they had seen in movies and television programs that detention settings were places where stabbings and rapes were commonplace. Another 33-year-old man said that after release he anticipated being perceived by others to have acquired HIV through sexual activity during incarceration:

People, when they talk about—if let’s say you [have] HIV and let’s say you are from prison—…they take it like maybe you got it in prison via that you were raped there or whatsoever. It’s how they think prison, you know, when you go there, obviously, inmates sleep with each other.

That is, others assumed he had acquired HIV through sexual activity while incarcerated, whether through sexual assault or consensual sex. The participant went on to say that anticipation of this assumption at times kept him from disclosing his HIV status.

Magobe’s story

A second story illustrates how participants’ experiences with stigma could converge with stereotypes about people in detention facilities in South Africa. Magobe (pseudonym), a 51-year-old man, was unemployed upon being released and lived in an impoverished area where he collected and recycled bottles for income. Once, while at his sister’s house, a young man from the community threatened him with a knife and swore at him. “He was calling me a bandit who comes from prison,” Magobe said. Asked to define bhantinti in detail, he said that the term means “someone who is a convict. Someone who does bad things.”

Magobe, who was diagnosed with HIV and initiated treatment while incarcerated, also struggled to disclose his HIV status to people upon release, out of concern that he would be perceived to have been infected while detained. “It was difficult. I did not know how I was going to approach the subject,” he said. Asked why not, he continued, “It is being afraid to tell them. Worried that they would not accept this thing because I was in prison and maybe they will think I got it in prison and then there’d be conflict.” Magobe did not explain in detail what he anticipated others would think about how he had acquired HIV while incarcerated. He shared that after some time, his told his sister of his status, and she responded positively.

Discussion

This study improves understanding of intersectional stigma among South African reentrants with HIV, especially the convergence of HIV stigma and incarceration stigma with stereotypes about people returning from detention facilities in South Africa. An improved understanding of this phenomenon has direct implications for AIDS education and prevention efforts: at individual, interpersonal, and community levels; in responding to the effects of employment and income generation on medication adherence; and, in relation to transforming societal perceptions of criminality and imprisonment as part of a multilevel strategy to improve health outcomes among reentrants.

South African reentrants’ experiences with HIV stigma draw attention to the need for increased AIDS education and prevention at the individual, interpersonal, and community levels. Participants in our sample spoke of experiences with HIV stigma that impeded disclosure, led to clinic avoidance, and lessened social support from family, friends, and community members. Existing HIV stigma reduction interventions could facilitate disclosure decision-making, build resilience against enactment and internalization of HIV stigma, and decrease community-level stigmatization of people living with HIV (Brown, Macintyre, and Trujillo 2003; Stangl et al. 2013; Rao et al. 2019). Importantly, anticipated HIV stigma among participants in our study was also connected with collecting treatment from public clinics, where visibly queuing for antiretrovirals was associated with involuntary status disclosure. In the absence of multilevel interventions reducing multiple forms of HIV stigma, differentiated HIV care strategies (Grimsrud et al. 2016; Phillips et al. 2015) such as community adherence clubs (Decroo et al. 2013; Govindasamy et al. 2014; Lazarus et al. 2014; Grimsrud et al. 2015; Wilkinson 2013) can provide a discreet means of dispensing medication and improving care engagement among reentrants in South Africa.

Incarceration stigma in the form of a criminal record along with decreased social support drove experiences of extreme socioeconomic instability among reentrants in our sample, at times leading to individuals being unable to obtain enough food to adhere to antiretroviral medication. South African legal researchers at Africa Criminal Justice Reform have advocated for more “selective and purposeful” categorization of offenses in criminal background checks, in order to balance the country’s need for public safety with the need for individuals returning from incarceration to reintegrate through gainful employment (Muntingh 2011). Absent such reforms, livelihood strengthening interventions focused on income generation can also contribute at least in part to increasing socioeconomic stability and food security in the South African context (Gibbs et al. 2017; Gibbs et al. 2012; Jewkes et al. 2014). Local municipal efforts that improve the socioeconomic standing of reentrants—such as through public works programs, further education and training, and small-business grants—would contribute to meaningfully addressing the effects of poverty on the health and well-being of reentrants with HIV in this context (Muntingh and Naude 2012).

Finally, we found compelling evidence that incarceration stigma and HIV stigma converged with stereotypes about people returning from detention facilities in South Africa, in ways that call for societal-level initiatives. Many participants in our study experienced stereotyping through others’ use of the term bhantinti, a term that pathologizes South African reentrants as “pure criminals.” Decoupling the bhantinti stereotype from people leaving incarceration will require a long-term, multilevel process involving various social actors taking destigmatizing actions such as making public claims about the worth and equivalence of people returning from incarceration (Clair, Daniel, and Lamont 2016). Outsiders’ perceptions of HIV as a marker of sexual activity between men, whether forced or consensual, compounded experiences of HIV stigma and further impeded HIV status disclosure among participants in our sample. Systems approaches to reducing sexual assault in incarceration facilities should continue to be implemented (Yap et al. 2011), as should widespread health communication interventions such as mass media and participatory theater that focus on destigmatizing the acquisition of HIV through sexual activity (Logie et al. 2019) and promoting the rights of incarcerated persons to sexual activity with partners of their choice. Ultimately, improving the health outcomes of reentrants with HIV will require a broad-based reframing of these individuals’ social position.

Several criteria demonstrate strengths and limitations in the qualitative trustworthiness of these findings and conclusions (Lincoln and Guba 1986). Prolonged engagement in data collection and analysis over a period of two years improved the results’ credibility. However, a lack of member checks with participants and of triangulation of interviews, such as with reentrants’ family members, potentially limited credibility. The absence of an exploration of variations in gendered experiences of intersectional stigma is an important limitation to this study and could be addressed in future through a comparative analysis of cis- and transgender men’s and women’s experiences with the intersection of HIV stigma, incarceration stigma, and stereotypes about reentrants. A detailed audit trail of our methods and analyses involving multiple team members increased the results’ confirmability. Per Morse (Morse 2015), validity of interviews was established in this study through: purposive selection of a sufficiently large study sample; development of a coding system; use of memos to clarify researcher effects; and inclusion of peer debriefing in data analysis. Reliability was established through development and audited application of a coding system.

Results of this study can inform future research in this area and guide the development of AIDS education and prevention programs to improve HIV care outcomes among people returning from incarceration in South Africa and elsewhere. Ultimately, such efforts will contribute to decreasing AIDS-related morbidity and mortality among reentrants and preventing onward HIV transmission in the communities to which they return.