Examining oral pre-exposure prophylaxis (PrEP) literacy among participants in an HIV vaccine trial preparedness cohort study
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 projects involve research in health system strengthening, health policy implementation in communities and research ethics.
In PrEPVacc, she is leading the South African Social Science team that 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 a recent paper describing research findings from PrEPVacc, published in BMC Health Services Research in November 2022. She answers questions about these findings below:
Can you describe this study in one sentence?
A qualitative study that assessed PrEP knowledge, understanding and uptake among a cohort of people selected in preparation for an HIV vaccine trial.
What did you initially set out to explore when you began the work reported in this article?
We initially explored people’s knowledge about HIV/AIDS, the factors that put both men and women at risk of acquiring HIV and solicited views about HIV prevention. Specifically, we wanted to know whether participants felt that oral PrEP if made available could contribute to preventing this HIV.
It was important to establish how much people understood and interpreted the information they received about PrEP and whether they translated that knowledge into positive health behaviours, such as engaging in HIV prevention and treatment care.
We collected data on knowledge about oral PrEP among participants in an HIV vaccine preparedness study from 2019-2021. We noted that despite efforts to increase PrEP awareness, knowledge and availability, PrEP uptake continues to be low in South Africa. We wanted to figure out why that is the case, and we analysed our data with PrEP literacy as the focus.
Can you walk me through the key steps in doing the work?
Our study was nested within the Registration Cohort of people selected in preparation for an HIV vaccine trial (PrEPVacc). HIV-negative participants aged 18-45 years were recruited between 2019-2021 to take part at two sites in south Africa: Phoenix and Verulam. Ten per cent of these were purposively selected on the basis of gender, age, location and occupation to take part in in-depth interviews. The consent discussion was initiated before recruitment to ensure participants made an informed choice and decision to be part of the interviews.
We conducted 25 interviews face to face at the clinical research site in IsiZulu (the main local language). Each interview lasted between 45-60 minutes. All interviews were digitally recorded, transcribed and translated into English. The interviewers held debrief meetings after each to assess their quality and discuss the patterns and themes emerging. Our analysis identified common patterns and themes around PrEP knowledge and perceptions of PrEP.
“Research has previously shown that having knowledge does not translate into acceptance of interventions ... our findings provide important learnings such as around the use of social media to improve acceptability, uptake and adherence to prevention products.”
How is this work of value and importance to PrEPVacc specifically, and of value more broadly?
For PrEPVacc, this work contributes to answering one of the study objectives that evaluates the effectiveness of TAF/FTC specifically and the use of PrEP in general.
Our work adds value by highlighting the reasons and factors that may impact PrEP uptake and adherence among the trial participants and engagement in the community.
By using the Socio Ecological Model, we were able to take a closer look at the personal/ individual, social and environmental factors that may either facilitate or prevent people from taking PrEP.
It is important to understand that while information is available on PrEP, individual and interpersonal factors play a part in explaining the level of understanding of PrEP and PrEP uptake among clinical trial participants. Understanding these factors may guide future intervention development.
We highlight in the paper that health information through social networking sites such as Twitter, Facebook and WhatsApp, can be highly effective and of great value in generating public discussions among users and other community members and help people to understand and interpret public health information. Information about PrEP can also be made available to the public in several forms: through leaflets as paper copies, shared on social media, and through local radio programmes.
Are there any ‘firsts’ that this research can claim?
As part of formative work prior to the clinical trial, it was important to understand the PrEP literacy of potential trial participants from a social science perspective. Through engaging with participants and understanding the different levels of influence that affect their health behaviours we have provided feedback and answers to some of the questions being raised by the PrEPVacc clinical trial as it progresses, in real time, so that these may be addressed. For example, the lack of PrEP adherence can be attributed to the high levels of stigma that the participants face within their communities.
Was anything in the work/results surprising to you? Or was everything as you expected?
Not quite, research has previously shown that having knowledge does not translate into acceptance of interventions. However, our findings provide important learnings such as around the use of social media to improve acceptability, uptake and adherence to prevention products.
Individuals understand and interpret knowledge differently. There are many factors to consider that can help us to understand whether that knowledge of PrEP influences their decision to either use or not use the drug.
Who should these findings matter most to?
Firstly, these findings addressed the question of why PrEP uptake has continued to be low in this setting. This has helped the PrEPVacc clinical trial team to answer questions they have about uptake and adherence. These findings may also inform future research and interventions addressing similar barriers to PrEP uptake.
Secondly, the findings may inform policymakers in implementing targeted interventions to promote uptake and use of PrEP as an effective HIV prevention intervention in the general population.
What question(s) does this research point you (or others) towards addressing next?
This was a clinical study setting where participants all received the same information on PrEP, so it would be interesting to repeat the work in other populations as part of an implementation science study within the service provision setting where healthcare providers give additional services thus the quality and extent of information provision is within that context.
Secondly, this was during a Vaccine trial preparedness study where participants were followed for a shorter period of time. It will be interesting to assess PrEP literacy when they are in a trial and are receiving this information longer to see whether this improves uptake.
Examining oral pre-exposure prophylaxis (PrEP) literacy among participants in an HIV vaccine trial preparedness cohort study
Rujeko Samanthia Chimukuche, Rachel Kawuma, Nteboheleng Mahapa, Smanga Mkhwanazi, Nishanta Singh, Samantha Siva, Eugene Ruzagira and Janet Seeley on behalf of the PrEPVacc Study Group
BMC Health Services Research volume 22, Article number: 1336 (2022)
Published: 10 November 2022 | https://doi.org/10.1186/s12913-022-08730-8