Traveller end of life care experiences and needs: thematic analysis

Abstract

ObjectivesTravelling 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.MethodsSecondary 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.ResultsTensions 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.ConclusionsImproved 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.