Participatory approach works

Fudge et al report that users were not involved in defining categories or criteria for their involvement in the stroke programme on which this published ethnography is based.¹

In our experience, user involvement, and research about user involvement, requires and benefits from a participatory approach.² This fosters congruence between the intentions of the work and the methods used. For our participatory research project we used a peer research model involving refugees and asylum seekers in Irish primary care.³

Five community representatives were active from the outset in shaping the research aims and objectives, co-designing research materials, doing fieldwork, and co-analysing collected data. The community representatives also defined criteria for evaluating their involvement.

They characterise their involvement as transformative for themselves and the wider community. They describe themselves as mediators and speak of themselves as a link between worlds of the Irish health service and their local networks. They say that they are seen as role models in the community, whose members have been prompted to be proactive about elements of their own health care. They now want to participate in more health related projects.

The costs of involving the community representatives are far outweighed by the high quality research, the genuine involvement of a marginalised community, and the creation of a resource for further work.