Co-designed study with the Traveller Community in Ireland to determine cancer awareness & attitudes

Abstract Background Irish Travellers are a distinct ethnic minority group (formal recognition March 2017). They experience higher mortality than the general population at all ages for all causes of death. Study Aim To determine cancer awareness and attitudes among the Traveller Community in Ireland, and to identify barriers/enablers to cancer risk reduction behaviours and early diagnosis of cancer. Methods A co-designed multi-method study was developed in collaboration with Pavee Point, a national NGO for Travellers, the National Social Inclusion Office (NSIO) and the National Cancer Control Programme (NCCP) including: 1. Consultation with Pavee Point and NSIO representatives to inform the study proposal and methodology. 2. Co-design of methodology for ethics applications and subsequent data collection plan including interview topic guides and the development of a culturally appropriate version of the NCCP’s 2022 National Survey on Cancer Awareness, adding questions on social determinants of health and screening participation. 3. Collaboration with 12 peer-led Primary Health Care for Travellers Projects (PHCTPs), to provide in-person training for Traveller Community Health Workers to undertake a cross-sectional survey of 380 adult Travellers. 4. Collaboration with PHCTPs to undertake 20 semi-structured interviews with Travellers. 5. Conduct of semi-structured interviews with healthcare professionals to explore perceptions of barriers/enablers for Travellers engaging with the health system. Lessons Learned Working closely and collaboratively with our study partners, we gained valuable insights which enabled effective and efficient data collection across 8 counties, while exceeding our survey target sample size. Implications for Research: Collaborative, trusting, and respectful relationships are critical for all studies, but particularly when working with minority groups. Conclusions The study findings will inform policy for improved cancer outcomes among Travellers in Ireland. Key messages • Formation of a collaborative and respectful relationship with the Traveller community has facilitated successful research. • Traveller Community Health Workers (peer researchers) were key to the success of data collection.