AIDS 2024: “I am not sick, why should I swallow daily pills?”: non-uptake of, and adherence to daily oral pre-exposure prophylaxis among adults at high-risk of HIV in Masaka, Uganda
Rachel Kawuma is a Social Scientist with a research interest in HIV prevention across the life course based at MRC/UVRI & LSHTM Uganda Research Unit. For more than fifteen years, she has worked on several studies, including clinical trials among diverse populations such as adolescents, female sex workers, fisher folk, discordant couples and members of the general population. Her research uses qualitative methods of inquiry to answer questions about trial acceptability, feasibility, adherence and general experiences among trial participants and general populations around the communities where they occur.
In the PrEPVacc study, Rachel coordinated the social science component in the trial across the four participating research sites in Uganda, Tanzania and South Africa. Her roles entailed: Designing the sub-study protocol and data collection tools; working closely with site teams to ensure that data is collected on time, written up and securely deposited on both the site servers and a central server hosted at the London School of Hygiene and Tropical Medicine (LSHTM); supporting site teams in developing data management and analysis plans which included manual coding of the data and identification of areas to write; and writing up and supporting other social scientists to write up findings for possible publication.
For this abstract, Rachel is the lead author and together with all sites social scientists describes research findings from the four PrEPVacc sites in South Africa, Tanzania and Uganda to be reported at the AIDS 2024 conference in July 2024. She answers questions about these findings below:
What was the problem this research was trying to address? Why does it matter?
In sub-Saharan African countries, oral pre-exposure prophylaxis (PrEP) has mainly been provided through daily regimens, yet uptake and adherence are sub-optimal. In the PrEPVacc trial, a phase IIb, double blind, placebo-controlled vaccine study which recruited 1512 (87% females) HIV-negative adults (18-40 years old) at increased risk of acquiring HIV, PrEP was provided and promoted to all trial participants for up to 6 months and after that encouraged to obtain non-study PrEP (TDF/FTC) from locally available sources.
How did you address this question?
A qualitative sub-study was embedded in the trial to explore non-uptake and adherence to daily oral PrEP by examining the attitudes and experiences of using PrEP and preference of using either daily or event-driven PrEP regimen at the Masaka site in Uganda.
What methods did you use?
We conducted in-depth interviews with 30 PrEP users (14 male and 16 females), and each was interviewed three times at months 2, 6 and 12 of participation to examine the patterns of taking PrEP. In addition, ten individuals who refused to take up PrEP were interviewed once and 45 (20 males and 25 females) who did not take part in IDIs participated in six focus group discussions (four with PrEP users and two with PrEP refusers of both genders).
Sampling characteristics included age, gender, PrEP arm, and adherence behaviours according to self-report and urine Tenofovir test results.
Data was manually coded and analysed using the thematic framework approach.
What did you find?
We found that:
Participants’ reluctance to take daily PrEP was based on the belief that one was not sick and did not require medication.
Those who refused to start on PrEP confessed a dislike for oral medication and preferred injections; in the context of the trial, the injection was the HIV vaccine.
Participants feared being seen taking daily pills because they associated pill-taking with being on antiretroviral therapy.
Some faced resistance from their partners, who suspected them of being promiscuous or living with HIV.
Side effects such as nausea and headaches were a ‘put off’ and often disrupted their daily routine.
However, we noticed that some made efforts to take PrEP during periods they perceived to be at risk of acquiring HIV.
What does this mean?
It means that participants interpret that medicine is for people who are not well, they have a dislike for medication, and that their relations and the environment they were in affected PrEP uptake.
This perception is cofounded by multiple factors at individual, relational and community level. To address this, interventions need to focus at all these levels.
Are you confident in your conclusions, or are there uncertainties or caveats you would wish people to know?
These findings resonate with what we found in the other three PrEPVacc sites highlighting the dislike of taking PrEP daily when one doesn’t perceive oneself to be sick. We can say that the findings are reasonably true by including individuals with varied characteristics who share their experiences of using PrEP.
Were these findings surprising?
Not surprising because oral PrEP uptake remains low in sub-Saharan Africa, and similar findings highlighted in this study have been previously documented.
What is the message of these findings for different people?
Increasing knowledge about HIV prevention among individuals so they appreciate why they need to take PrEP
People need to be supported to manage stigmatising situations and improve uptake.
Implementation of alternative PrEP regimens, such as oral event-driven PrEP, and other PrEP delivery methods such as injectables should be expedited to meet user preferences.
What question(s) does this research point you (or others) towards addressing next?
Addressing behavioural challenges that hinder PrEP uptake, such as the perceived stigma arising from associating PrEP with daily ART drugs. This can be through continuous education about PrEP and its function in public and privileging the factors that people in this study highlighted as barriers to uptake.
Also, there is a need to implement other options for taking PrEP, such as event-driven, in periods when one feels at high risk as opposed to taking it daily. And promoting the use of CAB-LA injectable PrEP would address concerns about taking daily pills and related factors.
Are there any ‘firsts’ that this research can claim?
PrEP non-uptake and non-adherence have been studied over time, but this study employed several sampling approaches to include participants from varied backgrounds. These findings contribute to an authentic understanding of the underlying factors that prevented PrEP from being taken up despite promotion and provision in the trial.
Any final thoughts?
These qualitative findings are important in understanding the low uptake of PrEP despite the perceived risk of HIV among this trial population. With HIV still a problem in Africa, researchers, policy makers, funders and governments need to continually promote the use of alternative forms of PrEP, such as the injectable, while ensuring the importance of PrEP is communicated and its access improved among all those who need it.
“I am not sick, why should I swallow daily pills?”: non-uptake of, and adherence to daily oral pre-exposure prophylaxis among adults at high-risk of HIV in Masaka, Uganda
Rachel Kawuma, Sarah Nakamanya, Georgina Nabaggala, Sylvia Kusemererwa, Eugene Ruzagira, Janet Seeley and the PrEPVacc Study Group.
TUPED376 at AIDS 2024 | Published: 23 July 2024 | Link to abstract in AIDS 2024 programme