How to make PrEP more youth-friendly in Kenya and Uganda

the SEARCH qualitative team

Sub-Saharan Africa has a burgeoning population of young people who bear a higher burden of new HIV infections globally. To tackle this HIV prevention challenge, Pre-exposure prophylaxis (PrEP) programs are now rapidly expanding in eastern and southern Africa, with an emphasis on the most vulnerable groups. To meet the needs of young people, these efforts must consider the individual, interpersonal and structural barriers they face to taking PrEP. The Sustainable East Africa Research in Community Health (SEARCH) study, an HIV test-and-treat trial in rural Kenya and Uganda, began implementing a PrEP program in 2016. The research team held focus groups of young men and young women age 15-24 in the study’s communities to deepen understanding of their demand and uptake of PrEP.

Several key themes emerged:

Less perceived severity of HIV in an age of effective treatment. Widespread use of antiretroviral therapy (ART) led focus group participants to see people living with HIV as healthy and able to do work, and the treatment seen to have prolonged their lives. One young women in Kenya said, “I don’t think this generation has seen a real HIV positive victim…a real thin and sick person. We are belittling HIV because we have not witnessed a real victim.” Young women were more concerned about pregnancy and other health issues. However, many still perceived lifelong daily ART treatment as a burden.

Gendered perceptions of HIV risk. Both young men and women expressed feeling at high personal risk and were curious about and interested in PrEP. Young men said they felt vulnerable because of both their own sex drives and pressure from women to exchange money for sex. Young women felt particularly vulnerable because of their partners’ high-risk sexual behavior. They reported that due to poverty and the inability of parents or partners to provide for many of their basic needs, many turned to transactional sex with older men for subsistence. They experienced difficulty negotiating condom use and discussing HIV testing with partners.

Misconceptions, fears and a need for “social proof.” Over the first few months that SEARCH offered PrEP, many community members with unfamiliar with it and rumors and misconceptions were common. One participant in Uganda commented, “What we worry about PrEP is that is it probably a test drug. You see for every drug to be introduced, it has to be tested first. So they might be testing the drug on Ugandans and it is likely that our people might not even know about the side effects of the drugs.” Young people were also worried about known potential side effects as well as rumored ones like reduced libido, infertility or fatigue. Some youth wanted “social proof” that PrEP works, including testimony of peers.

HIV-related stigma. Stigma around HIV and ART also worked against PrEP uptake. Some people feared that taking PrEP would make people assume they had HIV. The moral prohibition against sex among young people led to some youth feeling that they could not ask providers for PREP. Some thought providers were offering PrEP as a clandestine way to treat HIV without telling people they were infected.

Interference with ideas of healthiness and sexual freedom. Many young people thought the concept of taking daily medications while otherwise healthy was daunting. Medications were seen as something sick and older people take, challenging their identity of youth and healthiness. Many also thought it would require them to plan ahead for sex or wait to have sex, neither of which felt realistic.

Structural barriers to PrEP uptake. Young people who lived with their parents or were attending school faced additional barriers. One Ugandan woman said, “Educate our parents about PrEP! I can accept PrEP and then my mother stops me from taking it.”

For people in the focus groups who had already started taking PrEP, they cited a variety of motivations. They included distrust of partners’ sexual behavior, not knowing partners’ HIV status, their own multiple sexual partnerships, lack of agency to control or negotiate condom use, and the HIV-related illness of death of a former partner of family member. Some of them said that choosing to start PrEP meant they were taking a step toward achieving their life goals, like finishing school or having a family.

Many of those who had started PrEP took breaks or stopped. Some reported early side effects like headaches, nausea and fatigue. Some stopped because they were no longer with a partner and did not perceive themselves to be at risk, while others stopped because of unsupportive partners.

As PrEP implementation expands, additional strategies are needed to enhance community knowledge of PrEP and to support use among young people. Messaging, counseling and delivery models should address the diverse motivations and needs of young people. It will be critical to acknowledge that for many young people, HIV prevention is less salient than life goals and other health and economic priorities. More work is also needed to design strategies to support young people’s communication about PrEP with partners, parents and peers. Models to provide PrEP in the context of young people’s life priorities will be essential to achieve HIV prevention goals.