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

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

Louise Condon Professor, College of Human and Health Sciences, Swansea University, Swansea, Wales
Jolana Curejova Peer researcher, Roma community
Donna Leeanne Morgan Peer researcher, Gypsy/Traveller community
Glenn Miles Research officer, Swansea University, Swansea, Wales
Denise Barry Engagement officer, Travelling Ahead, TGP Cymru, Cardiff, Wales
Deborah Fenlon Professor emerita, College of Human and Health Sciences, Swansea University, Swansea, Wales

Why you should read this article:
  • To recognise the challenges of public involvement when researching the health of ethnic minority and marginalised groups

  • To be able to identify the complex role peer researchers play in building and maintaining trust between their own communities and academic researchers

  • To understand why peer researchers’ reflections on their involvement in participatory research are rarely heard

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.

Nurse Researcher. 30, 1, 17-23. doi: 10.7748/nr.2022.e1818

Correspondence

l.j.condon@swansea.ac.uk

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Conflict of interest

None declared

Permission

To reuse this article or for information about reprints and permissions, please contact permissions@rcni.com

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