We present the main results on perceived barriers and facilitators to PrEP use among participants across a modified socio-ecological model (Fig. 1). This includes multiple, and often interdependent, factors at the intrapersonal and individual level; the interpersonal level including partners, family, and peers; the health system level including experiences with providers, clinics, procurement of PrEP, beliefs and trust in the healthcare system; and finally, the broader community and society levels.
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Barriers to uptake and persistence on PrEP
We identified barriers to PrEP across all levels of the socio-ecological model, some emphasized by certain PP groups more than others. We found two themes shared across all groups that cut across levels of influence including (1) anticipated or experienced side-effects, and (2) manifestations of PrEP stigma. Below, we address these key themes before summarizing other barriers.
Side-Effects Experienced and Anticipated
The experience or threat of side-effects from taking PrEP acted as a barrier to both uptake and persistence for many, and was influenced by interpersonal factors most strongly, though not exclusively. Discussions with family, peers, and friends, particularly those ignorant about PrEP, or themselves wary of it, served to dissuade participants from starting PrEP, or at times convinced them to stop taking PrEP. Other participants described experiencing side-effects that some found too uncomfortable and influenced their discontinuation. These included vomiting, diarrhea, headaches, dizziness, nightmares, and fatigue. One 35-year-old woman described an overall fatigue she experienced which led her to stop taking PrEP:
…the only challenge is that the medicine makes me weak, like I have drunk without eating, I don't know. So sometimes you don't feel like taking it. (FSW, discontinued PrEP)
While many described experiencing one or more of these symptoms, those who continued also noted that they resolved within days or at most two weeks.
Some participants who never initiated PrEP described the aforementioned side-effects as a reason for hesitation. Often, however, they recounted additional potential negative health effects they heard from their peers, friends, or family members; most not substantiated by evidence, including organ damage—particularly liver disease, blindness, multiple forms of cancer, and impacts on menstrual cycles.
Some participants who started PrEP then described becoming convinced by their friends or peers to discontinue. Their friends would recall stopping because they feared serious effects on their bodies and would ask why the participant was still taking PrEP. Health providers also described such discussions and explained that they tried to give eligible patients complete information, including the real potential side-effects, and to dispel myths and misinformation circulating in their networks. One CHW who worked with FSWs explained:
… we make sure that we give them … full information and they get it from us and no one else. At times you find that maybe a friend would tell them [PrEP did] this and this to me. So …, we make sure that … they [have] full knowledge. (CHW)
Providers’ efforts to provide full information were challenged in part by a broader mistrust of the healthcare system. Two participants mentioned a recent scandal involving expired medication flooding the market and being convinced by others that their PrEP was likely also expired, as one manifestation of broader mistrust. This is reflected in the following comment by a 55-year-old woman in a SDC:
…because sometimes we don't trust the government in the first place with what's happening in the health industry. …I don't trust them. Now, if I take this drug then what next? Maybe they are expired, or they won't be there, then, ah I don't know. (Woman in SDC, did not start PrEP)
In summary, the experience or the anticipation of side-effects served as barriers to uptake or persistence on PrEP for participants across all PP groups.
Manifestations of PrEP Stigma
The amplifying effect of inadequate differentiation of PrEP for prevention from ART for treatment
Participants described their own challenges with understanding the difference between ART and PrEP, but more importantly emphasized their frustration and concern with the limited understanding of PrEP use for prevention within their social networks and the broader community. These concerns were rooted in entrenched stigmatization of HIV/AIDS faced by PLHIV, as well as reflected distrust of the health system, often in response to anticipated and enacted stigma, emphasized most by MSM.
At the individual level, some participants expressed concern and disbelief with the extent to which, whether, and in what ways PrEP differed from ART. This stemmed partially from inadequate understanding of the counseling they initially received when being introduced and invited to consider taking PrEP. One 37-year-old woman in a SDC who had initiated and then stopped taking PrEP explained her immediate reaction to learning about PrEP from a provider:
I was like now this a big lie. They just want us…to contract HIV… the tablets …are the same medicine for HIV. (IDI with woman in SDC)
Clinic providers and health volunteers within the community also noted this concern. They described clients as reluctant to believe that ARVs could be used for prevention without any health risks. One male CHW who worked with MSM explained that after learning about PrEP, many potential users would simply walk away, saying “these are just ARVs.” He went on to explain:
…it is very common, … you can tell, teach, educate, but somebody is like we have heard but we just don’t want, this … so-called PrEP is the same as ARVs, so don’t cheat us … so, what we do in that [case] is we tell them [we] will come again so that we [can] discuss this more because giving [a] health talk is an ongoing procedure. Today, they will not hear; but tomorrow, they will hear us. (CHW serving MSM)
For those who were convinced that PrEP could be used effectively for prevention, they then faced addressing ignorance and misinformation within their social networks, including family, friends, peers, and importantly, sexual partners. For some, the ignorance led them to stop taking PrEP out of fear of being labeled as a PLHIV. As a 21-year-old MSM reflected:
I was worried that people might be thinking I am taking ARVs because my mom found [my] PrEP and she was surprised, ‘Maybe you are positive.’ So I got the bottle and threw it in the toilet. They thought I was actually positive. (IDI with MSM, discontinued)
The low levels of understanding about PrEP in the community more broadly also influenced concerns about PrEP clients’ own reputation with friends, peers, and family members. Some MSM suggested that rumors could spread quickly within this tight-knit community, leading to concerns:
I was worried that if [my friends] hear that I have gone to get PrEP then they will start thinking that I am already sick [HIV positive] and … that is why I am not going for such drugs. (IDI with 19-year-old MSM, did not start PrEP)
Being identified as a PLHIV could then have additional consequences (e.g., partner violence, being thrown out of living situation, relationships ending), emphasized most by FSWs, and summarized in the following exchange during a focus group discussion:
I: What do others think might happen if she takes the PrEP medicine home when she stays with her partner?
R4: She might be beaten by her partner before she even tries to explain.
(FGD with FSWs, did not start PrEP)
Additionally, FSWs’ livelihood is dependent on not being labeled as ‘sick’. This may explain why concerns about the confusion between PrEP and ARVs featured more heavily among FSWs than other sub-groups. In reference to ignorance about PrEP among her clients, one woman who started PrEP but then discontinued explained:
Sometimes you ask someone’s status, he tells you he’s negative. He asks you, you also say you’re negative. Now when he sees you drinking that medicine, [he] will think they are ARVs. So that same fear, you’re afraid that you’ll be discovered. Then, they [clients] do not know the …benefits PrEP brings, they do not know. (35-year-old FSW, discontinued PrEP)
This may also be why FSWs emphasized their hope that broader efforts would be made to educate the public at large on PrEP and the difference between taking the drugs as prevention rather than treatment. One 34-year-old woman underlined how much more could be done by comparing knowledge about PrEP to that of COVID-19:
Corona has just been there for 2 years, but even young children know about it. (FSW, continued PrEP)
While not emphasized quite as much, other groups shared concern over the limited knowledge about PrEP within the broader community and expressed frustration that the onus of educating the community fell on them.
Emerging and Enacted Stigmas
PrEP stigma and partner dynamics
At the interpersonal level, the use of PrEP, when not mistaken for ART, could raise issues of intimate partner mistrust. This was particularly, though not exclusively, of concern for MSM in intimate relationships, as the interest in using PrEP signaled either distrust of one’s partner, intentions of infidelity, or both. One 20-year-old MSM CHW shared a first-person telling of challenges with introducing PrEP within a relationship:
‘Babe, I want to start taking PrEP’ then he [asked] me ‘Why do you want to start taking PrEP?’ Then I told him, ‘It protects from HIV.’ Then he said, ‘So you assume that I can give you HIV?’ I told him ‘No.’ Then he [asked] me ‘But why are you taking PrEP if you know I can’t give you HIV?’ (CHW)
For FSWs, by contrast, interpersonal barriers to the use of PrEP with intimate partners were more often rooted in challenges detailed in theme one concerning the confusion between PrEP and ART, as opposed to concerns about infidelity.
Anticipated and Enacted Stigma among MSM in the Clinic and Community
At the community and healthcare system levels, alongside concerns about being mis-identified as PLHIV, MSM in particular also faced extremely high levels of stigma, discrimination, and threats of criminalization attached to their identity as MSM. While all groups shared concerns with accessing care from clinics, and a few FSW also expressed concerns with anticipated stigma attached to their identities, MSM expressed the strongest reservations. The views of MSM held by community members extended into the clinic, where they were expressed by fellow patients, as well as the HCWs from whom they hoped to receive care. One MSM serving as a CHW described how a nurse asked MSM awaiting care for their names, and upon hearing them snapped: “You children with the names from the Bible, what’s making you behave this way?” In other cases, MSM recounted feeling as though they were put on display, with HCWs not so quietly calling over colleagues to gawk at them. These behaviors were described as hurtful, but worse was the underlying threat of criminalization. In a FGD with MSM, one man recounted a well-known story of a HCW turning a patient over to the police:
…he went to seek health care services because he had an STI in his [anus]; the clinician called the police on him and that's how he was arrested. So [any other MSM] will obviously be afraid because he will be thinking that the clinicians will call the police on him. (FGD, MSM, did not start PrEP)
Given this context, even with efforts to train HCW on the importance of delivering nonjudgmental care, engage CSOs, and train peer MSM to serve as community liaisons, the majority of MSM participants remained wary of seeking healthcare from a clinic. MSM relied on peer recommendations of which clinics were safe and which specific providers could be trusted. As one MSM who had not started on PrEP explained:
…us KPs, we prefer going to doctors we are familiar with. So if we find any other doctor, we will be skeptical in approaching them because I don't know the response the new doctor will give (FGD, MSM, did not start PrEP)
This latter point becomes more significant when considering the frequent movement demanded of government HCWs, who are often re-posted. Once a trusted provider leaves, seeking services at the clinic can be perceived as too high a risk to take.
Additional barriers across the socio-ecological model
In addition to the aforementioned main themes, other factors served as barriers to PrEP use, some of which were more of a concern for certain PP groups as compared to others.
Individual-level barriers
At the individual level, MSM and FSW clients, as well as providers, described excessive alcohol use as impacting intended persistence on PrEP. In addition, providers mentioned the mobility of SWs as a barrier for continued PrEP use. Several more practical concerns were commonly raised by many participants, including the size of the pill and challenges with swallowing it (especially among women), forgetting to take the pill every day, or at the same time every day, and concerns about having to take a pill every day. Another less common, yet notable, barrier shared by one FSW and one man in a SDC was that using PrEP might result in their increased non-use of condoms, which could increase their risk of other illnesses. A 36-year-old man explained:
If I am taking [PrEP], then it’s more like I’ll just be encouraging myself to [have] unprotected sex. So let me not go for this. (man in SDC, did not start PrEP)
In other words, among some of the risk averse, appreciation of the multiple protections afforded from condoms served as a barrier to PrEP use.
Pervasive clinic-level barriers to PrEP uptake and persistence
Additional health system-related barriers were shared across all PP groups including long queues, clinic hours conflicting with work schedules, and clinic wait times, which often exacerbated concerns that PrEP clients might be confused for PLHIV waiting to receive ARVs. Another barrier mentioned were drug stock-outs, which were particularly acute during COVID-19. Several participants suggested that repeated stock-outs prevented their uptake, let alone continuation, on PrEP.
Facilitators to uptake and persistence on PrEP
We present facilitators of PrEP use across the socio-ecological model. We identified four main themes including: (1) perceived HIV risk; and (2) protecting family as individual-level motivations for PrEP use; (3) social support and accountability as interpersonal facilitators; and (4) the importance of welcoming, convenient, and confidential health services at the healthcare and community levels.
Individual-level facilitators
Perceived risk across varying levels of agency
At the individual level, among those who initiated on PrEP, many explained this was motivated by high self-perceived HIV risk resulting from either their sexual behavioral choices, or their constrained capacity to ensure consistent condom use in their sexual relationships.
Alongside the acknowledgement that their work involved having sex with multiple partners, both women and men in SW described pressure from clients to forgo condom use as reasons for their increased HIV risk; and therefore, their interest in using PrEP. Participants in SW also emphasized the difficulty with turning away clients willing to pay more for sex without a condom.
I think PrEP has worked better because you know when you're a FSW, condoms, some people will say I don't use condoms, or they'll offer some big amount of money. So you say I am using PrEP, okay fine. Take the risk, I need that money. (33-year-old FSW, continued PrEP)
SWs had to balance known risks with immediate financial needs, which caused fear and anxiety that PrEP use helped them to overcome. Several FSWs had also experienced sexual violence with clients or non-partners, such as coerced sex with police officers. The threat of exposure to HIV alongside such violence served for some as an additional motivation to begin using PrEP.
For both MSM and FSWs, the use of PrEP was also motivated by an acknowledgement of one’s own engagement in related risky behavior, including self-described excessive alcohol use impairing their decision-making, as captured by the following 33-year-old FSW:
…especially when it comes to alcohol. It puts us at a high risk. Now when you drink, you're drunk, no protection. You see, and sometimes the use of condoms, people don't know how to use condoms, it puts them at risk. Even just our behavior …Sometimes when I get drunk, I love beer too much.
(FSW, continued PrEP)
Other participants described their preference for enjoying having multiple sexual partners, while acknowledging this put them at risk. One 30-year-old MSM explained:
…I am constantly at risk and constantly dependent on PrEP for three years now. So, it has become my life, until the day I will say that I am done with the risky things. (MSM, continued PrEP)
Finally, participants in SDC also noted that PrEP offered a welcome alternative to condom use.
Protecting family
Another motivation for persisting on PrEP, emphasized by many women in SW, and those in SDC, was the interest in ensuring they remained healthy and HIV-free for their children. This is summarized in the following exchange during an interview with a 34-year-old FSW who had continued on PrEP for more than three months:
I: So your children were the ones that led you to want to be on PrEP?
R: Yes [the] thought of their well-being pushed me further … I was like if I get sick then no one will take care of them and they will suffer. (FSW, continued PrEP)
Similar sentiments were conveyed by those in SDC. A woman who had been in a SDC, but recently separated from her husband, explained how her children had motivated her decision to go on PrEP when she was with him:
…mmm I just started thinking of my own children that if I don’t take these continuously … then my children will suffer. I was like this disease, if not controlled, can kill you, so that’s how I continued. (37-year-old woman in SDC, discontinued PrEP)
Being motivated to begin PrEP for the sake of one’s children’s wellbeing is indirectly influenced by interpersonal factors. Other interpersonal factors operated more directly, including the role of social support, addressed below.
Interpersonal facilitators: Social support and accountability
While misinformed peers and family were described as discouraging PrEP uptake or persistence; knowledgeable friends, family, and partners were described as key sources of motivation, support, and accountability in persisting on PrEP. Participants across all groups indicated that they felt encouraged by friends also taking PrEP, but the role of friends was most apparent among MSM. Many discussed their role in encouraging others to begin PrEP, and how, in turn, these friends or family helped remind them to remain on PrEP. As one 30-year-old MSM who described himself as “a daredevil” because he was the first of his friends to start PrEP explained:
I introduced a friend of mine… I think I had my close friends, four of them join to [take] PrEP, so we would remind each other. (MSM, continued PrEP)
Alternatively, FSWs and some in SDC were more likely to mention the role of family members who understood the importance of PrEP, as a source of support. After describing her own role in encouraging two sisters and three friends to start PrEP, one 33-year-old FSW went on to talk about the role of her mother:
…my mother … she's very supportive. She'll even tell me … ‘Even your father could have been alive by this time [if] there was ARVs, PrEP like this’ … She supports me, encourages me, shouts at me, corrects me. (FSW, continued PrEP)
While not stated directly, this participant’s family appears to have been deeply affected by HIV, and that may be an important source of both knowledge about ARVs and PrEP, as well as motivation to use these drugs effectively for prevention.
Healthcare system facilitators: Welcoming, convenient, and confidential health services
Across all groups, participants emphasized the importance of having reliably welcoming, nonjudgmental, and professional experiences with healthcare providers either at the clinic, or in their community, as significantly influencing their ability to start and continue PrEP. Those who had initiated on PrEP described both interpersonal and structural influences within the health system as important.
Trained HCW attitudes, including their demonstrated understanding of KP concerns and needs, were especially important to MSM, and many indicated they felt particularly safe at the case study facility, as one 27-year-old MSM who had been on PrEP for more than three months indicated: “I am comfortable here…I have not seen anyone treat me badly.”
From a structural perspective, participants emphasized the importance of the establishment of private consultation rooms at the clinic. Unlike many clinics, where services, including pharmaceutical services, are delivered in non-private spaces, the Z-CHECK program created private consultation spaces. One 30-year-old MSM who had continued to take PrEP for more than three months exclaimed:
You are in a counselling room which has a sign that reads ‘Do Not Disturb’…You actually have more confidentiality there, so there was no one that could know. (MSM, continued PrEP)
A 34-year-old FSW who had continued on PrEP added:
…the new method of just going inside the doctor’s room is better because no one will know what you went there for. (FSW, continued PrEP)
In addition to services at the clinic, some participants had benefitted from services delivered to them in the community. These services included education, health assessment, and community-based drug dispensation. Participants who had benefitted from these services noted their convenience and their perceived safety in receiving services from trained lay providers who were their own peers. As one man, who himself had not yet started PrEP described:
…we used to fear going to clinics but now health services have been brought close to us … if I have a problem I don't have to go to the facility, I just call them and explain my problem and if it's urgent I go to their place or they come pick and take you to a facility if it's a big problem. (FGD with MSM, did not start)
As seen in Fig. 1, while factors at the individual level that facilitated PrEP use differed from many of the barriers; at the interpersonal and health system levels, many of the same factors were raised. The conditions and contexts that transformed these factors into facilitators could inform further intervention.
Recommendations to Overcome Barriers to PrEP Uptake and Persistence
Study participants offered numerous recommendations toward either enhancing facilitators or overcoming what they perceived as some of the more important barriers to uptake and persistence on PrEP among their peers or the KPs they served (see Table 3).
Table 3
Participant Recommendations to Address Key Barriers to Uptake and Persistence on PrEP
Theme | Sub-theme | Quotes and Related Details | Barriers or Facilitators Addressed |
Improve Information and Education | Community: Expand efforts to educate public on PrEP and how it differs from ART | I really want to see a future where information about PrEP can be on our fingertips. Not whereby you having to follow it to Sepo Center. I would like most people in the community to know about PrEP. That's what I want, more information to be given. Not only us but to other people. (FGD, MSM, did not start) | Anticipatory stigma of misidentification as PLHIV; prevalence of misinformation and myths circulating in community; fears of violence, job loss, and retribution if confused as PLHIV (for sex workers) |
Awareness for Potential PrEP Users | …we just hear ‘PrEP,’ we want to be taught. We need to hear the side-effects, about this PrEP. Just the knowledge. We just want to know. When you go, don't go for good. … Come back and check on us. (IDI, 35-year-old FSW, discontinued) | Prevalence of misinformation about PrEP; fears around imagined side-effects |
Instruction | …you need to explain what it is, how it looks like, and give them samples, they can touch as well. And also tell them exactly what it does in your body. Exactly. So if people don't have that information, they … should really get that scientific explanation. (IDI, 24-year-old MSM, continued) | Limited knowledge and understanding of PrEP |
Address Stigma and Discrimination | Train more providers on how to work with KPs | So it is very very important [for providers to be able to understand the needs of the MSM community] …to have them trained and have as part of the intensified sensitization training for the PrEP for civil health care service providers and also Community Health Service Providers across the communities so that they can have an absolute understanding and become aware of key population’s existence and of sexual behavior’s existence and also have them of offer services even if they may not necessarily agree. (CSO leader for MSM) | Stigmatization, discrimination against KPs |
Drug-specific | Differentiate PrEP appearance and packaging from drugs used for ART; Offer injectable PrEP to address partner dynamics and stigma | Anticipatory stigma of misidentification as PLHIV; fears of violence, job loss, and retribution if confused as PLHIV (for FSWs) |
Improve and expand PrEP delivery | Delivery of PrEP Services into homes and communities (expand DSD) | Bring the medication to houses because it’s not everyone that is okay or comfortable with collecting medication from the clinic. Most think that …when/if people see them, they will judge them. (28-year-old woman in SDC, continued) | Anticipatory stigma of misidentification as PLHIV; fears of violence, job loss, and retribution if confused as PLHIV (for FSWs) |
Increase network connectivity | Expand programs to rural areas; build out infrastructure for informal support groups through social media and DSD platforms to help remind people when to get refills | Enhance social support and accountability |
Pill-specific | Produce smaller pills so it is easier to swallow | Practical barriers to use |
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Participants strongly recommended expanding information and education on PrEP. Foremost was the insistence that the broader community must be educated on PrEP and how it differed from ART. Participants felt strongly that once the broader community came to understand the mechanisms through which these drugs can be used to prevent HIV, they would hold less fear around collecting and taking them. In addition to educating the broader community, PP participants also emphasized the necessity for repeat follow-up education sessions, so that they did not only “hear” about PrEP once but were “taught” about PrEP through repeat sessions, including candid discussion of its actual side-effects, preferably from someone who was using PrEP. By working with current PrEP users, myths could be more easily dispelled and real experiences conveyed. Detailed knowledge from a reliable source would also diminish the misinformation circulating in their networks. Further, CHWs and clients suggested modalities for such education including print materials, community drama, large-scale advertisements (e.g., billboards), and workshops in churches and schools.
Another set of recommendations addressed anticipated and enacted stigma against KP members, particularly within the healthcare system. To address concerns raised about how clinics/clinicians and even CHWs introduce and attend to PrEP with KPs, providers and clients recommended expanding sensitivity/educational training to more people, and on additional topics (e.g., mental health, risky sexual practices, quality of care alongside sensitization).
Finally, participants offered numerous recommendations related to the delivery of drugs into the community and the human body. Several participants expressed their wish for an injectable form of PrEP (without necessarily knowing this was under development). Participants described this both as a practical solution to having to take a large pill every day, as well as a means of resolving barriers attached to the concern that PrEP may be confused for ART. It would also alleviate concerns regarding partner trust, as injectable methods would be far more discrete.
Alternatively, participants offered recommendations for differentiating the appearance of ART used for PrEP versus HIV treatment. Suggestions included changing the packaging, or the appearance of the drug itself so as not to be confused with HIV therapy.
Participants also recommended expanding PrEP services into community sites and safe spaces. This recommendation responds to numerous practical concerns with accessing PrEP at a clinic (distance, wait times, opening hours) and, at least as importantly, could address stigma and discrimination. Finally, MSM were most likely to recommend further facilitation of SMS-based support groups, specifically for MSM to share their PrEP experiences, knowledge, and help navigate the process of uptake and persistence. For MSM, feeling safe was incredibly important, and they felt safest when talking with other MSM.