Materials and methods

Study context

The study was conducted among a sample of participants (age 15 and older) selected from SEARCH (Sustainable East Africa Research in Community Health), a community-level cluster randomized controlled “universal test and treat (UTT)” trial in 32 communities in three regions of Uganda and Kenya exploring the effect of ART initiation at any CD4 count with streamlined delivery [43]. SEARCH demonstrated that its interventions of hybrid mobile testing campaigns [43] and flexible, patient-centered “streamlined care” led to testing, linkage and viral suppression rates that surpassed the 90-90-90 goals after three years [44, 45]. The qualitative study was embedded within 8 of the 32 communities of the trial (Fig 1) to characterize the diverse social and cultural contexts of the SEARCH intervention, including the prevalence of forms of stigma and discrimination towards PLWHIV in the baseline year of the trial.

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Fig 1. SEARCH study communities.

https://doi.org/10.1371/journal.pone.0249462.g001

Qualitative study team

The study co-investigator/qualitative lead led a gender-balanced team of eight US and eastern Africa-based researchers. Team members were trained in qualitative research methods and analysis. All team members, including those who collected the data, were involved in the analyses, interpretation, and writing of this manuscript.

Participants and procedures

The qualitative study utilized both purposive and systematic sampling methods to compose three cohorts of participants: community leaders, HIV care providers, and community members. The cohort of community leaders (n = 32) was selected purposively for gender balance from among the local leaders engaged by SEARCH to help mobilize communities (including members of local councils, Village Health Teams and fishing community leaders, selected for the cohort independent of their HIV status). The cohort of providers (n = 50) was selected purposively to include the cadre of clinical officers, nurses, and HIV counsellors providing care at clinics serving the study communities. To attain heterogeneity in the community cohort by theoretically salient characteristics such as gender and HIV status, the cohort of n = 112 community members was systematically selected (systematic progression through a list of eligible participants organized by HIV status and gender) from a stratified random sub-sample of HIV-positive and -negative community members participating in a household socioeconomic survey in the study communities. To attain heterogeneity in the sample by treatment status at baseline the HIV-positive members the community cohort was further selected to compose equally-sized groups of individuals linked to care but with high CD4 count/unsuppressed viral load, those linked to care with suppressed viral load, and those unlinked to HIV care at baseline. All cohorts sought balance by gender to ensure a range of perspectives. A total of 184 interviews were included within the analyses. Participant characteristics are presented in Table 1.

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Table 1. Participant characteristics.

https://doi.org/10.1371/journal.pone.0249462.t001

Data collection and analysis

Baseline data was collected between February to December 2014. In-depth interviews were conducted utilizing semi-structured guides in the local languages (Ateso, Dholuo, Lugwere, Lusoga, and Runyankole). Privacy and confidentiality were ensured during the data collection process by selecting private, comfortable and convenient spaces for interview. The community member and community leader interviews explored perceived social norms and practices related to HIV testing, disclosure, and care seeking, while provider interviews explored individual and community-level perceptions of HIV and challenges to ART initiation and HIV care provision. All interviews explored individual and community-held beliefs about PLHIV and HIV including stigma and discrimination. Interviews were translated, and transcribed audio recordings into English. An inclusive master code list was developed utilizing the areas of inquiry from the interview guides and a priori codes were defined and applied by an eight-person team on the basis of theory; codes were iteratively refined during the analytical process. Data analyses were conducted using Atlas.ti 7.0. We categorized the diverse experiences of stigma and its consequences in domains of enacted, internalized, and perceived stigma, and explored how these experiences were patterned by regional and other characteristics. We present verbatim quotes to highlight the rich experiences of PLHIV experiencing stigma, as well as community and provider perspectives about persistent stigma.

Ethical approval

The study received ethical approvals from the University of California San Francisco Committee on Human Research, the Ethical Review Committee of the Kenya Medical Research Institute, the Makerere University School of Medicine Research and Ethics Committee, and the Uganda National Council for Science and Technology. All study participants provided written confirmation of informed consent to participate in the study during enrolment.

Experiences of enacted stigma

Enacted stigma was expressed as verbal discrimination and humiliation, and rejection, including explicit acts of segregation, which were largely motivated by fear of contagion. It included both personal experiences of discrimination by PLHIV, and discriminatory acts and attitudes towards PLHIV as reported by HIV-negative participants. Verbal abuse was the most frequently reported enacted stigma. Mocking, harassment, pejorative labelling and name calling was frequently used for humiliation and public devaluation of PLHIV, including referring to them as close to death or already dead, as illustrated by the following quotes:

‘They say that “I am sure she is about to die; she is just a moving corpse”. When you hear that you start to feel bad.’ (HIV-positive female, Uganda)

‘I have heard people calling them derogatory names like ‘Otolo’ to mean those who have benefited from use of ARVs [. . . .] In this beach, if you are not a strong willed fisherman, then you cannot survive’ (HIV-positive male, Kenya)

‘Some community people like to laugh at us HIV positive people. They say “that person is about to die; dead bodies! You are dead people!”‘ (HIV-positive female, Uganda)

‘People laugh at us… they point fingers saying that we are dead […] when people are in groups they talk ill about people with HIV saying that those ones [PLHIV] are finished [.…] One man commented, “our village is going to become Luwero [Luwero is a district in Uganda which was heavily impacted by HIV and the civil war in the 1980s]” meaning that all people in the village are going to die off’ (HIV-positive female, Uganda)

‘You hear people say that “X died a long time ago”, and you feel like your life is not good and you hate everything’ (HIV-positive female, Uganda)

Similar perceptions of HIV as a death sentence were reflected in comments by HIV-negative community members, evidenced in the following quotation:

‘It is because I know that being tested HIV positive means that I am a death candidate […] Thank God I am HIV negative.’ (HIV-Negative male, Uganda)

Participant narratives also demonstrated significant challenges in the home environment related to intimate relationships, including loss of support, outright rejection, and physical violence; these findings were exclusive to women, no partner rejection or abuse was reported as having occurred to men.

‘There was a pregnant woman who tested HIV positive and was advised to disclose her status to the husband. The husband was not amused…he rejected her and she died two days later out of shock in her 7 months of pregnancy.’ (HIV-negative female, Kenya)

‘There was even another woman whose husband refused to access HIV care till they separated […] the husband even traced her up to Migori District Hospital (about 20 km away) where she opted to access HIV care. He waited for her by the gate and beat her thoroughly and even snatched her drugs.’ (Male provider, Kenya)

Several respondents shared how PLHIV were physically excluded from participating in social activities or how physical contact with PLHIV was avoided, even by way of inanimate objects, largely stemming from irrational fears of contamination and infection among HIV-negative community members:

‘The people that do not have HIV do not talk well about those that have it [PLHIV]; they abuse them [. . . .] For example, if that HIV-positive person is going to touch something, they tell him, “do not touch it because you died a long time ago!”‘ (HIV-Positive female, Uganda)

‘People don’t want to use a cup that an HIV patient has used and they throw away razor blades or safety pins that the patient touches because they don’t want to contract HIV. Some even tell you not to touch their belongings because you are sick.’ (HIV-positive female, Uganda)

One HIV-negative respondent also voiced a preference for having quarantined HIV-positive individuals to prevent the spread of HIV:

‘I feel the government ought to have done something when HIV started. They [PLHIV] ought to have been isolated from the non HIV infected persons, somewhere that they just stay on their own and being fed well to avoid further transmission’ (HIV-negative male, Kenya)

Other areas of exclusion of PLHIV were evident in narratives around community leadership and livelihood opportunities:

‘There is open discrimination and name calling that demoralizes the infected persons. Some even tell you on the face that you cannot do certain jobs that require strength because you are on drugs (ARVs).’ (HIV-negative male, Kenya)

‘He [HIV-positive patient] gave us a testimony that if you are sick and you talk, especially government workers, you get problems because everyone sees you as someone not alive, not managing and worthless.’ (Female provider, Uganda)

‘Like political and leadership opportunities in the community, people will not be willing to give someone [PLHIV] responsibility who is going to die soon.’ (HIV-negative male, Kenya)

Internalized stigma and its consequences

Narratives revealed an internalization of social attitudes, fears, and discrimination towards PLHIV. Evidence of internalized stigma was found in participant accounts of feelings of worthlessness, shame, and embarrassment. Participants expressed difficulty accepting their serostatus, embarrassment associated with their HIV infection, and shame, which made it difficult to not only disclose their HIV status, but to also interact with others. Narratives also described depressive symptoms and suicidal thoughts among PLHIV. These accounts reveal the emotional distress brought on by internalized stigma and the distancing of self that occurs in self-stigmatizing individuals.

PLHIV evidenced internalized stigma in discussions about feeling worthless, non-existent, and being ‘dead’. Others describe shame or embarrassment about their HIV-status, often associated with the community perception that HIV is a disease affecting the immoral or promiscuous. Fear, shame, and embarrassment were common responses to others’ awareness of a participant’s HIV-positive status:

‘I was feeling ashamed and feared others disclosing my status to the public.’ (HIV-positive female, Kenya)

‘When someone knows that you are sick, you have Siriimu [HIV], and you get embarrassed.’ (HIV-positive female, Uganda)

‘At times you hear a person say in public that you have HIV and you start to feel embarrassed […] you see this disease does not [have a] cure and everyone thinks it is the worst disease; in fact, the people in my village think that way.’ (HIV-positive female, Uganda)

A woman discusses embarrassment as a reason for not disclosing her HIV status to her immediate family:

‘My mother has died but I can’t tell my relatives. They can only know at the time when I am bedridden but if I am still looking healthy and doing my duties as normal, I wouldn’t want them to know […] I feel embarrassed […] what will they think of me, that our sibling is on ARVs.’ (HIV-positive female, Kenya)

HIV-positive individuals’ acute awareness and internalization of the negative community perceptions about HIV led to significant mental health consequences and distancing from family members and friends. Narratives revealed extreme cases of anxiety and depression marked by suicidal thoughts and attempts, revealed by HIV-positive individuals, and by their HIV-negative friends or healthcare providers. Many of these situations were precipitated by an HIV-positive diagnosis or a disclosure event.

‘[There was] not even a friend could I meet or talk to at that time. I even failed to move to the public. I was all the time in bed. Time came when I felt like committing suicide’ (HIV-positive male, Uganda)

‘On telling her the results she refused and even reacted badly about the news that she was HIV positive. She had a lot of anxiety and depression and it seems at one time she wanted to commit suicide’ (Male provider, Uganda)

One woman described the failed suicide attempt of her husband and co-wife, upon her discovery of their HIV-positive status:

‘My co-wife used to hide the drugs until a neighbour leaked this out to me. When I told my husband […], he opted to commit suicide together with my co-wife and had it not been for a certain man who found them in the bush where they were prepared to die, they could be no more. They were caught offside having mixed the poison and were ready to drink’ (HIV-positive female, Kenya)

Anticipated stigma and its consequences

Participant report of anticipated stigma included fears of negative attitudes and behaviors towards PLHIV, including judgement, marital dissolution, verbal and physical abuse. These stigma anticipations acted as barriers to care engagement, often leading PLHIV to delay disclosure, hide medication, and seek treatment in remote facilities. Narratives showed that PLHIV concealed their HIV status from their spouses, immediate family members, and the community, because of fears of being judged as forlorn and ‘dead’:

‘I do not know if every old person thinks like that or it is [my mother] alone […] if I go home today and tell [her], “mother as you see me here I have HIV”, from that day she keeps seeing me like a dead person. She has nine children but she will keep counting eight even when I am still alive’ (HIV-positive male, Uganda)

‘That is our culture, when people get to know [that you are positive], you get ashamed, and they see you as a problem […], that you did something outrageous […]. Some people start avoiding you, as if you have no use and they look to you as someone who is dead already’ (Female provider, Uganda)

A disclosure of HIV-positive status was also expected to culminate in social rejection and compromised intimate relationships. This was particularly salient among women, who were often afraid of losing their marriages, and youth, who were anxious about diminished sexual or marital prospects:

‘Some [HIV-positive women] are still sexually active and they do not want to be discovered […] they are in fear that they will be rejected by those who are negative’ (HIV-negative male, Uganda)

‘This is common among the youth and young women […] they would not want to be associated with the disease lest they miss on girlfriends and men lovers respectively’ (HIV-negative male, Kenya)

PWLHA also anticipated public ridicule, gossip and verbal insults from community members:

‘People start to spread rumours about you and you cease to fit in public such that wherever you go people are gossiping about you that you have HIV and I may not feel good about that’ (HIV-positive male, Uganda)

Providers reported how several HIV-positive men controlled their wives’ access to HIV care, either through preventing access to ARVs, restricting their clinic attendance, or limiting their access overall, due to fears of their own HIV status being disclosed:

‘There is a lady [that we initiated] on ART. […] The husband asked her why she was always going to the health facility every month [….] The husband did not want her to be seen taking HIV medication and she did not know what to do.’ (Female provider, Uganda)

‘[One female patient] said that her husband does not want people to know that [they have HIV], so they have to come for their drugs at 6:00 pm when everyone else has left the clinic.’ (Female provider, Uganda)

‘I once heard from a friend […] that her husband was throwing away her drugs and some other hospital supplies meant for those who are living with HIV. He was doing this not knowing that he was already infected as well.’ (HIV-positive female, Kenya)

Strategies for coping with or avoiding anticipated stigma

Anticipated stigma had a significant impact on care seeking and HIV medication adherence. Participants shared a number of coping strategies to avoid the anticipated stigma of inadvertent disclosure of HIV-positive status while seeking HIV care, including avoiding care altogether, modifying the location where they sought care, avoiding seeking care during peak hours, and not associating with services or incentives reserved for HIV-positive patients. A male community member discusses avoiding care as a result of shame:

‘I was saying people will say ‘oh so and so is having HIV’ so I kept it to myself until I went down and down until I was bedridden.’ (HIV-positive male, Kenya)

Providers describe patients avoiding care in an effort to avoid the stigma associated with being seen by someone he/she knows, including health workers, whom they did not trust to maintain privacy:

‘Some clients fear other health workers at the facility. We one-time had a scenario of a client who denied being in care after seeing a health worker whom the client knew. We later realized that it was a stigma issue.’ (Female provider, Uganda)

‘She said that if she came to the clinic and met that health worker, the whole village would get to know about her status because the health worker was her relative and that he would tell everyone about her condition.’ (Male provider, Uganda)

Providers describe care seeking in remote facilities as a coping strategy for anticipated stigma:

‘Because of stigma […] the person opts to even walk to Mbita district hospital (6km) or even to Ogongo sub district hospital (31km) simply because of stigma.’ (Male provider, Kenya)

‘They [patients] continue trying all efforts to get treatment from far where he is not known. So the biggest thing is that they are ashamed.’ (Male provider, Uganda)

A provider describes patients’ practice of care seeking outside of normal clinic hours as a strategy to avoid anticipated stigma:

‘When other patients come at the normal time the other patients with the problem of stigma tend to come late in the evening and we have to help them even when they come late which we find challenging.’ (Male provider, Uganda)

PLHIV seeking care at the clinic often avoided being near rooms or areas designated for PLHIV; waiting in these areas was considered to be an inadvertent disclosure:

‘She told me that she can’t sit in that tent at the facility […] She said that people will see her coming to the clinic and they will know that she is sick […] I waited for her the next day [… but] she has not showed up yet.’ (Male provider, Uganda)

Patients also refused clinic-offered incentives reserved for PLHIV for fear of association with HIV.

‘There were jerry cans we were given as the HIV-positive people but in this whole village people feared to pick them with the exception of my family just because they fear to be identified as being HIV[-positive]’ (HIV-positive female, Uganda)

In some cases, anticipated stigma associated with being seen in possession of ARVs (both the packaging and the actual pills) led participants to hide their drugs, and resulted in difficulty adhering to ARTs. A provider describes patients’ strategies to avoid stigma:

‘The [female patients] used to throw the [ART medication’] boxes in the bushes. But these days they are used; they just leave the boxes in the bins [throw away the drugs at the health facility]. So it is just stigma and the way they stay in their particular homes. The [husbands] do not allow them to take the drugs’ (Male provider, Kenya)]