1. The palliative and end of life care experiences, views and needs of Gypsy, Traveller and Roma communities: a systematic literature review and narrative synthesis

 

Research contact

Dr Kathryn Dixon, Academic Clinical Fellow in General Practice
Email: kcd23@medschl.cam.ac.uk
ORCiD: 0000-0002-6565-6057

Project length

2019 – 2021

Summary

A systematic review of and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities.

Thirteen papers from eight studies were included in the synthesis. Although there was variation between communities, three overarching and inter-related themes were identified. 1) Strong family and community values include a preference for healthcare to be provided from within the community, duty to demonstrate respect by attending the bedside and illness as a community problem with decision-making extending beyond the patient. 2) Distinct health beliefs regarding superstitions around illness, personal care, death rituals and bereavement. 3) Practical barriers to non-community healthcare provision include communication difficulties, limited awareness of and access to services, tensions between patients and healthcare professionals and lack of training in delivering culturally appropriate care. Conclusion: A wide range of factors influence Gypsy, Traveller and Roma community access to palliative care. Community diversity requires sensitive and highly individualised approaches to patient care.

Funding

Health Education East of England

Outputs

Presented at SAPC SE Conference January 2020 and the National GP ACF Conference in March 2020. Currently under review for publication.

Prospectively registered on PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019147905