Reflections on doing participatory research in health: participation, method and power

Abstract

The author has reflected on her experience in facilitating three participatory research (PR) projects to identify key issues surrounding participation, method and power. The three PR projects in health, all undertaken in the same region in southeast Australia, assessed the needs of women who have experienced breast cancer, evaluated an Indigenous healthy lifestyle programme and developed and documented a model of coordinated care by a consumer group. In particular, the three participatory projects suggested that participants do not always want to maximise their own participation and may prefer external researcher involvement – relationships, confidentiality, anonymity and time‐impacted perspectives of participation. In one study, quantitative methods were selected and time and previous knowledge of research shaped participants' selection of method. In the projects, power relations were complex and issues of negotiation, inclusion, quality of research, agendas, roles and integrity are discussed. The lessons learned here are that participatory researchers can be open to differing levels of participation and methods while also comfortable with sharing decision‐making in research, even if it alters the research outcome.