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Traveller end of life care experiences and needs: thematic analysis
  1. Kathryn Charlotte Dixon,
  2. Riccardo Conci,
  3. Ben Bowers,
  4. Robbie Duschinsky,
  5. Anna Spathis and
  6. Stephen Barclay
  1. Department of Public Health and Primary Care, University of Cambridge, Cambridge, Cambridgeshire, UK
  1. Correspondence to Dr Kathryn Charlotte Dixon, Department of Public Health and Primary Care, University of Cambridge, Cambridge, Cambridgeshire CB2 1TN, UK; kcd23{at}medschl.cam.ac.uk

Abstract

Objectives Travelling communities are a significant, but poorly understood, group of ethnic minorities known to experience inequalities in many aspects of healthcare, including at the end of life. This study explored the end of life care experiences and needs of Travellers, along with the perspectives of healthcare professionals.

Methods Secondary thematic analysis of data from two focus groups and 16 interviews. Eighteen UK-based members of Travelling communities and three healthcare professionals took part in two focus groups. Sixteen hospice staff were interviewed. Data were collected by UK charity One Voice 4 Travellers in 2018.

Results Tensions permeated the healthcare experience of Travellers. The perceived need for concealment of ethnic identity in the healthcare setting conflicted with participants’ desire for personalised care and tailored services. Healthcare professionals’ limited awareness of Travellers’ cultural rituals around death led to difficulties, including misunderstandings relating to the large numbers of family gathered at the bedside of dying relatives in hospital and hospice settings. Approaches that could increase the acceptability of healthcare included Travellers working in liaison roles, increased provision of space for visiting family and cultural competency training for staff. However, challenges remain in converting ideal solutions into feasible changes.

Conclusions Improved communication and understanding between Travelling communities and healthcare professionals is needed to relieve the multilevel tensions experienced at the end of life. At an individual level, this would enable personalised care; at a systems level, cocreation of end of life care services with Travellers would help ensure that their cultural needs are met.

  • Cultural issues

Data availability statement

Data are available upon reasonable request. The original audio recordings are freely available in the public domain and can be downloaded from https://onevoice4travellers.co.uk/index.php/suffolk-project-building-bridges-of-connection/

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Data availability statement

Data are available upon reasonable request. The original audio recordings are freely available in the public domain and can be downloaded from https://onevoice4travellers.co.uk/index.php/suffolk-project-building-bridges-of-connection/

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Footnotes

  • X @Kathryn_Dixon_, @Ben_Bowers__

  • Contributors Methodological advice was provided by RD and AS. Thematic analysis was undertaken by KCD, RC, BB and AS. KCD coded all transcripts and RC was the second coder, coding the first 20 minutes of each transcript. Themes were developed through researcher triangulation meetings between KCD, RC and AS and through peer debriefing with BB. KCD wrote the final manuscript with supervision, comments and review from AS, RD and SB. BB and RC also reviewed the final manuscript. KCD is the guarantor.

  • Funding KCD is an Academic Clinical Fellow funded by Health Education East of England. BB is funded by the Wellcome Trust [225577/Z/22/Z]. SB is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridge and Peterborough NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.