AIDS 2024: HIV risk perception, trust and PrEP adherence among participants in an HIV prevention trial: a qualitative longitudinal study, South Africa
Samanthia Chidawanyika, Africa Health Research Institute
Rujeko Samanthia Chidawanyika is a Research Associate in the Social Sciences Core at Africa Health Research Institute in Durban KwaZulu-Natal, South Africa. She holds a PhD in Gender Studies and a Master’s in Development Studies. She provides technical and scientific skills support in multidisciplinary and multi-country projects at AHRI. Her interests involve social and behavioural research in HIV cure science, HIV prevention and ethics in global health.
In PrEPVacc, she leads the South African Social Science team, which is conducting the qualitative component of the study. She coordinates data collection and leads in data analysis and manuscript writing.
Samanthia is the lead author of an abstract describing research findings from PrEPVacc, 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?
We wanted to assess HIV risk perception and the positive changes in health behaviours, including uptake and continued use of PrEP in the clinical trial. How participants perceived their HIV risk changes their health behaviour and adherence to prevention and treatment methods.
What was your study trying to find out?
We wanted to see how people felt about their risk of getting HIV and how that affected their willingness to use and adhere to PrEP.
How did you address this question?
Using the Trust, Confidence, and Cooperation (TCC) model, we assessed HIV risk perception to understand better how individuals assess and respond to HIV risks. The TCC model helped us to explain how trust plays an important role in shaping peoples’ HIV risk perceptions and their responses towards it.
What methods did you use?
We used qualitative methods in this study. We did in-depth interviews with the same 30 people in three phases throughout the study (though five dropped out during the course of the study). The first interviews were conducted after two months of participation in the clinical trial. The second interviews four months later, and the third after one year of participation in the clinical trial. The interviews were done at time phases to assess whether participants continued with PrEP, to investigate the facilitators and barriers in PrEP uptake and the experiences with the vaccine and trial.
What did you find?
We found out that trust is a key factor in shaping whether people accept or reject HIV prevention interventions, especially in clinical trial settings. It plays a very important role in shaping HIV risk perception and acceptance of new ideas or interventions. People tend to trust information from sources they believe to be reliable and credible.
Participants in this study stated that they trusted PrEP and the clinical trial staff. The guidance and assistance provided by the trial staff were instrumental in helping them adhere to PrEP. Adhering to daily intake and committing themselves to the clinical trial resulted in low HIV risk perception.
What does this mean?
Providing education and access to preventive measures and counselling was beneficial because it promoted cooperation from clinical trial participants and positive health behaviours. It reinforced the trust and led to a willingness to continue using PrEP and other HIV prevention measures, such as regular condom use.
Are you confident in your conclusions, or are there uncertainties or caveats you would wish people to know?
Our study sample was limited to the clinical trial population and can't be generalised to a broader population. We ensured the sample captured various experiences within the trial and found common themes. Studying a wider population outside of clinical trials would be valuable in better understanding PrEP uptake in different contexts.
Were these findings surprising or what you expected?
Assessing HIV risk perception in the clinical trial was one of our objectives when we started our study. We wanted to evaluate how risk perception encouraged positive health behaviours among participants in a longitudinal study. Learning that trust was a significant factor in influencing an individual's decision to engage in health-promoting or preventive behaviours was interesting and surprising.
What is the message of these findings for different people?
Our results show the importance of building trust when engaging with the community in interventions. Collaboration with community gate-keepers or community organisations is important in conveying information that builds trust. In this study, community engagement officers distributed information about PrEP and the importance of adherence. Clinical trial staff, counsellors and nurses reiterated the same message.
What question(s) does this research point you (or others) towards addressing next?
More research could explore how HIV prevention interventions build and maintain trust with participants and encourage continued uptake with care or adherence. Since this research was on clinical trial participants, further research can also be done to explore understanding of PrEP uptake in personal and social contexts.
Are there any ‘firsts’ that this research can claim?
The PrEPVacc clinical trial infrastructure provided comprehensive support services (e.g., general health check-ups, sexual and reproductive health services) at the trial site, making participation in the study more beneficial and convenient for participants, thereby sustaining engagement. The trial provided access to psychological counselling, which addressed emotional and mental health needs, which are also important in HIV prevention efforts.
The PrEPVacc trial also used a multidisciplinary approach. Social and behavioural studies encouraged transparent communication about trial purposes, potential risks, and benefits increasing participants’ trust and willingness to remain in the study. Collecting and analysing participant feedback throughout the trial provided insights into their experiences and helped identify areas for improvement.
Any final thoughts?
When people trust a source or a product they engage with it and are cooperative. This is important in recruitment, uptake, and adherence to HIV treatment methods or interventions. Deliberate steps should be taken to build this trust with the community to support future research or involvement in clinical trials.
HIV risk perception, trust and PrEP adherence among participants in an HIV prevention trial: a qualitative longitudinal study, South Africa
Rujeko Samanthia Chimukuche, Londiwe Shandu, Phindile Khanyile, Silindile Zulu, Nishanta Singh, Zakir Gaffoor, Rachel Kawuma, Sheena McCormack and Janet Seeley, on behalf of the PrEPVacc Study Group
THPED393 at AIDS 2024 | Published 23 July 2024 | Link to abstract in AIDS 2024 programme