Qualitative research with adolescents and young adults in rural Kenya and Uganda revealed multiple factors affecting the uptake of pre-exposure prophylaxis (PrEP) to prevent HIV infection. While young people felt vulnerable to acquiring HIV, the perceived severity of infection with HIV had been diminished due to the success of antiretroviral therapy (ART).
Motivations tended to be gendered: young men viewed themselves at high risk due to their sexual partners having concurrent relationships with older men. PrEP was both protective and liberating in that it offered the potential of condomless sexual pursuit. For young women, factors such as transactional sex and challenges negotiating condom use made PrEP an attractive option, reflecting the limited amount of agency women had when it came to sexual negotiation. PrEP-stigma was closely related to HIV-stigma and the burden of taking daily pills while healthy was a deterrent.
This research was carried out by Dr Carol Camlin from the University of California, San Francisco and colleagues as part of the Sustainable East Africa Research in Community Health (SEARCH) study and published in AIDS and Behavior.
In 2016 and 2017, SEARCH began implementing a population-level PrEP intervention prior to the national PrEP rollout in Kenya and Uganda. As part of door-to-door community testing campaigns, PrEP was offered free of charge to individuals who had tested HIV negative and were at elevated risk of HIV. While previous studies have reported on PrEP for young women in sub-Saharan Africa, this is one of the first to report on the response of young heterosexual men to PrEP.
After PrEP was made available, data were collected from eight focus group discussions (four male and four female groups) with 56 female and 32 male participants aged 15 to 24. An additional 23 in-depth interviews were conducted with nine women and 14 men, aged 15 to 35, with a median age of 24. Of those interviewed, 13 had opted for PrEP while ten had declined. Twelve of the interviewees were unmarried.
The following themes emerged from the focus groups and interviews.
The severity of HIV
For many young people, the worst days of the AIDS epidemic were something that they had heard about but not personally experienced. Many HIV-positive people in these communities were on antiretroviral treatment. The perceived severity of infection with HIV was somewhat diminished, deterring young people from seeking PrEP.
“Because ARVs [antiretrovirals] are available, some youth now days do not see HIV/AIDS as a serious disease, just because they know there is ARVs. Some youths say, ‘even if I contract HIV I will go to [the] health center and start taking ARVs.’” – Ugandan male.
There was more fear of other health conditions:
“The greatest risk that affects the current young woman is about the pregnancy. They say taking HIV drugs is like drinking water, because it is an easy task to do. What most of the people fear most nowadays is the cancer other than HIV.” – Kenyan female.
Nonetheless, when participants had to think of themselves contracting the virus, the necessity of daily medication was highlighted as a burden.
“They say that once you get infected and start on ART you cannot stop for the rest of your life… The fact is that once I start taking ART medication I have to do so each and every day for the rest of my life, and if I stop, I will face problems…” – Kenyan male.
Gendered perceptions of HIV risk
Many young people still considered themselves at high risk for contracting HIV and expressed interest in PrEP. Concerns about contracting HIV, and the resultant desire to use PrEP, were patterned along gender lines with young males and females expressing different fears and motivations.
"PrEP was not only seen as protective but also a means to increase sexual satisfaction."
This was linked to the different degrees of agency that young men and women had. While PrEP was seen as attractive for men because it was viewed as liberating and a means of enacting masculinity, women viewed it as an additional form of protection that could offer more control over sexual encounters.
Young men saw PrEP as a tool that would allow them multiple sexual partners without having to worry about condom use. Here, PrEP was not only seen as protective but also a means to increase sexual satisfaction.
“Most of us youths have a tendency of forgetting to use a condom when we are going to have sex. But if I have swallowed these drugs, even when I forget to put on a condom I will already be protected from contracting HIV.” – Ugandan male.
Young men also expressed concern about potentially contracting HIV from young women who also had older male sexual partners. Thus, they alluded to the idea of “sexual networks” and the effects of these on onward HIV transmission.
“Men, we tend to love the female young ladies for sex. They also have other older men whose financial status is somehow stable. I end up sleeping with her not taking into account that she may have some other men elsewhere.” – Kenyan male.
Young women also perceived their risk to be high due to the behaviour of their partners.
“Since your partner is not an angel and I may not be sure of his other movements, it would be prudent to use PrEP.” – Kenyan female.
Additionally, young women cited transactional sex with older males as a motivator to use PrEP. They spoke of financial reliance on men in order to survive or maintain a certain standard of living.
“As ladies we believe in money – and by the way we cannot survive without money – the moment I get one who can meet my needs, I will have to be faithful to him.” – Kenyan female.
Condom use with both casual and regular partners was rare, and women often felt unable to control their partners’ use of condoms.
“What I see, you can find a man, he entices you, you tell him to put on a condom, and then you find that he has later removed it.” – Ugandan female.
One participant who declined PrEP commented on challenges related to discussing HIV with partners.
“The minute you bring it up the next sentence is, ‘so you don’t trust me’… That may make him feel insecure, and you can be dumped just because of that issue. To save the relationship, you don’t talk about HIV.” – Kenyan female.
Perceptions of PrEP
At the time of the SEARCH PrEP trial, national rollout in both Kenya and Uganda were still in the early phases and there had been no prior awareness campaigns in the study communities. This led many participants to question the safety and effectiveness of PrEP. They spoke about the need to see it working for other community members before trying it themselves.
“They might be testing the drug on Ugandans and it is likely that you people might not even know about the side effects of the drugs. You see [he] is taking those drugs, if he does not get infected with HIV in these three months; that that is when I will be sure that the drugs really work.” – Ugandan male.
PrEP was also intimately linked to HIV-related stigma, with some participants (mostly men) fearing that others would think that they had HIV if they took PrEP. Linked to this, some participants believed that healthcare providers were deceptively treating an existing HIV infection under the guise of offering PrEP.
“I was like, ‘are these people trying to hide the truth from me, but I have the virus, and so they are trying to trick me around so they may start me on ARVs unknowingly?’” – Ugandan male.
"The idea of taking daily medication was at odds with being young and healthy."
Some participants, especially those who were religious and believed in abstinence, expressed concerns that PrEP would lead to increased promiscuity. Some also said it would be embarrassing to ask healthcare providers for PrEP.
“I also think that PrEP should not be promoted, because it will encourage young girls to have reckless sex.” – Ugandan female.
For many, the idea of taking daily medication was at odds with being young and healthy. Participants were also concerned about the need to take PrEP for several weeks (as per the study recommendations) before achieving protective levels. The perception that sex had to be stringently scheduled in accordance with PrEP dosing was seen as unrealistic.
“How do you start taking drugs and yet you are not sick?” – Kenyan female.
“PrEP is good, but the frequency of taking it is a concern... my boyfriend is just a doorstep away. I cannot schedule to have sex with him in the next 28 days waiting to complete the PrEP dose.” – Kenyan female
People who started PrEP
In-depth interviews with those who chose to take PrEP revealed varied motivations for doing so, reflecting the gendered perceptions of risk discussed above. Participants were more likely to initiate PrEP if they had experienced the HIV-related illness or death of a family member or partner. An important pre-condition for starting PrEP was a belief in its effectiveness.
“I feel really comfortable knowing that chances of HIV risk are minimal.” – Kenyan male.
“I thought of it as something that will protect my life. I first got a shock – ‘Really? There is a drug that prevents HIV?’ …I was very happy about it because my husband can’t stick to one woman, yet I don’t want to get infected.” – Ugandan female.
"Some women said they needed to get their partner's permission to take PrEP."
Men were able to initiate PrEP without discussing it with their partners, whereas some women said they needed to get permission. Discussions around starting PrEP could raise questions about trust and infidelity and act as a barrier to PrEP use. However, in some instances, partners chose to take PrEP together as a means of protecting each other.
“You will not tell him that you are using PrEP because he will not agree to it: ‘why are you taking PrEP and yet I am the one you consider your boyfriend?’” – Kenyan female.
For many, the decision to start PrEP was an empowering one that provided peace of mind but also allowed them to pursue life goals without the fear of contracting HIV.
“The risk I have is that if get infected with HIV, I will fail to fulfill my dreams. Because you may have a desire to do something, like to care for yourself or your family… I want to complete my studies when I am ok. Secondly, I want to have a family that is admired by people.” – Ugandan male.
This study highlights important differences in the gendered motivations for seeking out PrEP in sub-Saharan African settings and raises important questions about agency and decision-making power.
The authors conclude: “Perceptions of HIV risk were highly gendered: young men in our study… perceived their risks of HIV to mostly stem from their own behaviors, and therefore under their more direct control; they were enthusiastic about PrEP as a vehicle for safely pursuing sex with multiple partners. Young women, who had little control over partner behaviors and felt pressure to engage in transactional and condomless sex, viewed PrEP as a means to assert control over sexual risks.”
Camlin CS et al. Understanding Demand for PrEP and Early Experiences of PrEP Use Among Young Adults in Rural Kenya and Uganda: A Qualitative Study. AIDS and Behavior, online ahead of print, 2020.