The views and experiences of HIV research participants in sub-Saharan Africa

Abstract

Background: HIV clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation whilst at the same time ensuring informed consent and the protection of participants’ rights. Objective: This review aimed to identify key issues that may affect HIV research, from the perspective of research participants, in order to scale up high quality ethical HIV research practice. Methods: A systematic review of qualitative studies was conducted using a pragmatic meta-aggregative approach developed by the Joanna Briggs Institute (JBI). The review included studies whose participants were current or former adult HIV research participants from sub-Saharan African countries. Nine databases were searched in June 2013, followed by hand searching of reference lists. Studies published between 1995 to present were considered. Eleven qualitative studies were included in the review. Methodological quality was assessed using the JBI's Qualitative Assessment and Review Instrument (QARI). Results: The 11 studies reported findings from 461 participants. Findings from each study were extracted and clustered into 8 categories based on similarities in meaning. These were further synthesized into 4 directive findings, set out below: i. Participation in HIV research is related to perceived personal benefits and benefits for wider society; ii. Research participation is influenced by fear of social or physical harm; iii. Poor understanding of research processes and concepts is common; iv. Social relationships and domestic contexts have a significant impact on HIV research participation and adherence. Discussion: The results show a willingness to participate in HIV research. Continued efforts are required to engage with communities to support research participation and to develop innovative ways to ensure and maintain informed consent. Conclusion: The majority of studies focused on experiences around research enrolment and retention. Research on participants’ experiences of research (trial) closure is lacking, indicating an area where future investigation is required.