Community participation in health research: an ethnography from rural Swaziland.

Abstract

Community participation in all aspects of health research is widely advocated. However, there is a lack of specificity in reporting what community members actually do, and reported participation is typically limited to discrete research activities. Greater specificity in reporting has potential to clarify how community participation might occur and how it might influence empowerment and research rigour. We conducted an ethnographic study of participatory health research (PHR) in a socio-economically marginalized rural Swazi community. Data about 10 community co-researchers' participation in research workshops and field work were collected through participant observation over 14 months and analysed using directed content analysis, informed by the Comprehensive Community Participation in Research Framework (CCPRF). The analysis demonstrated that facilitating extensive community participation in PHR is feasible and identified 10 new research process activities in which community members might participate, for inclusion in an expanded CCPRF. We provide examples of how community members might participate in 57/59 expanded CCPRF activities and show that participatory, dialogue-based activities can be effective tools for facilitating research participation in ways that empower individual co-researchers and enhance research rigour. However, our results highlight limitations of community participation related to utilizing research results to inform actions, and empowering communities to control their environments and improve their health.