Eliciting participant feedback in focus group discussions to strengthen the implementation of a HIV prevention study



Adolescent girls and young women (AGYW) in sub-Saharan Africa are disproportionately affected by HIV, yet there is limited guidance on their engagement in biomedical HIV prevention research. Engaging AGYW through focus group discussions (FGDs) on study implementation may help inform and improve study procedures, address concerns and challenges, and ensure their needs are met in a timely manner.


Implementation-focused FGDs were conducted in MTN-034/REACH, an ongoing trial evaluating the safety of and adherence to the monthly dapivirine vaginal ring and daily oral PrEP among AGYW (16-21) in three African countries (South Africa, Uganda, Zimbabwe). Trained social scientists facilitated 8 FGDs using a semi-structured guide with topics related to motivation to join the study, interactions with staff, challenges to product adherence, disclosure of product use, and community perceptions of the products and trial. Each FGD was conducted with participants who have completed 2-6 months of the 18-month study. Summary reports of each FGD were disseminated to behavioral researchers, clinical researchers, and staff within and across sites.


These procedures offer an innovative bottom-up approach to improve study implementation in real-time using participant feedback. Creating positive environments for receiving feedback and systematically distributing feedback across the study team facilitated the creation of actionable plans to address participants’ concerns and challenges. Feedback communication channels included 1) FGD facilitators presenting findings to clinic staff at internal meetings, 2) site investigators consulting staff mentioned in FGDs, and 3) study management sharing findings with adherence counselors. Reviewing the objectives of these FGDs in advance improved staff’s receptivity to feedback and criticisms. These FGDs resulted in actions such as organizing laboratory tours for community members to dispel rumors related to the trial, limiting the number of staff present during clinical procedures to increase privacy, and improving the efficiency of clinic flow during participants’ visits.


For clinic staff and behavioral scientists involved in the design and implementation of HIV prevention trials for AGYW, early-stage implementation-focused discussion groups can help identify challenges participants face, open communication channels among research staff, and address the needs of young participants.