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

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.

Cancer diagnosis, treatment and care: A qualitative study of the experiences and health service use of Roma, Gypsies and Travellers.

BACKGROUND: Early diagnosis and treatment are key to reducing deaths from cancer, but people from Black and Minority Ethnic (BME) groups are more likely to encounter delays in entering the cancer care system. Roma, Gypsies and Travellers are ethnic minorities who experience extreme health inequalities. OBJECTIVE: To explore the experiences of cancer diagnosis, treatment and care among people who self-identify as Roma or Gypsies and Travellers. METHODS: A participatory qualitative approach was taken. Peer researchers conducted semi-structured interviews (n = 37) and one focus group (n = 4) with community members in Wales and England, UK. RESULTS: Cancer fatalism is declining, but Roma, Gypsies and Travellers experience barriers to cancer healthcare at service user, service provider and organisational levels. Communication was problematic for all groups, and Roma participants reported lack of access to interpreters within primary care. Clear communication and trusting relationships with health professionals are highly valued and most frequently found in tertiary care. CONCLUSION: This study suggests that Roma, Gypsies and Travellers are motivated to access health care for cancer diagnosis and treatment, but barriers experienced in primary care can prevent or delay access to diagnostic and treatment services. Organisational changes, plus increased cultural competence among health professionals, have the potential to reduce inequalities in early detection of cancer.