Setting up participatory research: a discussion of the initial stages

Abstract

Summary Participatory research is becoming a very popular way of helping to empower people with learning disabilities. All stages of this kind of research are conducted in partnership with non‐disabled researchers. Furthermore, the research agenda in learning disability is moving towards increasing participation in all forms of research. As a group undertaking participatory research, the present authors wish to share their experience of setting up a project over a period of 9 months to examine ‘keeping fit’. The authors include adults with learning disabilities, clinicians and a researcher from a primary care NHS trust, and support workers who work directly with the adults with learning disabilities in various community settings. An understanding of what is involved in participatory research is important as a first stage, and so the present authors invited speakers undertaking a similar project investigating direct payments to a one‐day conference that was set up locally. At the end of the conference, the present authors requested volunteers for the local project to investigate health. This approach enabled well‐informed agreement to participate. The present paper discusses the initial 9 months of the project, including a description of the volunteers and the major issues which all the participants learned during these early stages.