Participatory Health Research: Who Participates in What?
Participatory research aims to study and change social reality in collaborative ways. The concept of participation plays a key role. In this article, I clarify the concept using the example of a participatory health research study. The study design presented here is based on the principles of Community-Based Participatory Research (CBPR). These principles as well as the key concepts of "community" and "participation" are introduced. Subsequently, the realization of these concepts is illustrated using a specific example: the PaKoMi project is a participatory research project on health promotion and HIV prevention with immigrant communities in Germany. The following questions are discussed: 1. Which actors are involved? (Who participates?); 2. What processes do they participate in?; 3. How is their participation realized? The actors, methods, and forms of participation are analyzed by focusing on research-related participation that takes place in participatory case studies and workshops. Community partners (members of immigrant communities), service providers (staff from AIDS service organizations), and researchers share decision making power to differing degrees in all phases of the research processes—from formulating the aims and research questions, to collecting and analyzing data, to disseminating the study findings. "Peer researchers" were trained to conduct studies in their respective immigrant communities. Reflecting on the study design, I discuss the opportunities of doing research in participatory ways. Also, challenges and open questions are addressed, such as power differences and preconditions for the participation of socially marginalized groups, pitfalls in defining and involving community and the question of transferability of CBPR as a North-American research strategy to the German context.