Public involvement in participatory research: the experiences of peer interviewers from Roma, Gypsy and Traveller communities.

Abstract

Background: A vital component of research is patient and public involvement (PPI). The challenges of PPI increase when conducting cross-cultural research into sensitive subjects with marginalised ethnic minority groups.

Aim: To present the authors' reflections on conducting peer interviews with members of Roma, Gypsy and Traveller communities.

Discussion: The authors provide examples of reflections on collecting data from a participatory research project that explored Gypsies, Roma and Travellers' experiences of cancer in their communities. They derived the reflections from audio-recorded, post-interview debriefs with co-researchers from the same ethnic backgrounds as interviewees ('peer researchers'). The main challenges for the peer researchers were cultural, linguistic and pragmatic, all fundamentally related to exploring a sensitive health topic through the lens of ethnicity.

Conclusion: Peer researchers recognised their role in building bridges between participants and the research team. They did this by establishing a relationship of trust, minimising distress, representing the views of their communities and obtaining data to meet the aims of the project. Peer researchers perform multiple roles to assist in cross-cultural data collection in participatory research.

Implications for practice: This article highlights underexplored aspects of peer researchers' work that have implications for the planning and conduct of cross-cultural research with marginalised groups.