Involving lay community researchers in epidemiological research: experiences from a seroprevalence study among sub-Saharan African migrants

Community-based participatory research (CBPR) has received considerable attention during past decades as a method to increase community ownership in research and prevention. We discuss its application to epidemiological research using the case of second-generation surveillance conducted among sub-Saharan African (SSA) migrants in Antwerp city. To inform evidence-based prevention planning for this target group, this HIV-prevalence study used two-stage time-location sampling preceded by formative research. Extensive collaborative partnerships were built with community organizations, a Community Advisory Board provided input throughout the project, and community researchers were trained to participate in all phases of the seroprevalence study. Valid oral fluid samples for HIV testing were collected among 717 SSA migrants and linked to behavioural data assessed through an anonymous survey between December 2013 and August 2014. A qualitative content analysis of various data sources (extensive field notes, minutes of intervision, and training protocols) collected at 77 data collection visits in 51 settings was carried out to describe experiences with challenges and opportunities inherent to the CBPR approach at three crucial stages of the research process: building collaborative partnerships; implementing the study; dissemination of findings including prevention planning. The results show that CBPR is feasible in conducting scientifically sound epidemiological research, but certain requirements need to be in place. These include among others sufficient resources to train, coordinate, and supervise community researchers; continuity in the implementation; transparency about decision-taking and administrative procedures, and willingness to share power and control over the full research process. CBPR contributed to empowering community researchers on a personal level, and to create greater HIV prevention demand in the SSA communities.