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. DiscussionThe 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.

Participatory peer research exploring the experience of learning during Covid-19 for allied health and healthcare science students

“…It is suggested that data collection can be more authentic and valid when it is co-constructed with people that have lived through or with the experience [ 34 ]. This approach has been used within a wide range of populations, including older people [ 35 ], young people [ 36 ], people with long term health conditions [ 37 ] and minority communities [ 38 ]. The research team was conscious of hierarchy and power imbalances noted in the literature [ 39 ], and adopted strategies, such as regularly meetings and technologies that enabled duel control of inputting content, for all members of the project team to feel comfortable contributing on an equal level.…”