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Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis
  1. Kathryn Charlotte Dixon1,
  2. Rebecca Ferris2,
  3. Isla Kuhn3,
  4. Anna Spathis1 and
  5. Stephen Barclay1
  1. 1Department of Public Health and Primary Care, University of Cambridge, Cambridge, Cambridgeshire, UK
  2. 2Cambridge Postgraduate Medical Centre, Addenbrooke's Hospital, Cambridge, Cambridgeshire, UK
  3. 3Medical Library, University of Cambridge, Cambridge, Cambridgeshire, UK
  1. Correspondence to Kathryn Charlotte Dixon, University of Cambridge Department of Public Health and Primary Care, Cambridge, UK; kcd23{at}medschl.cam.ac.uk

Abstract

Background Gypsy, Traveller and Roma communities are known to experience health inequalities. There has been little focus on palliative care in these communities despite the well-recognised inequalities of access to palliative care in other minority ethnic groups.

Methods Systematic review and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities. Medline, Embase, Emcare, CINAHL, PsycINFO, Web of Science, Scopus, AMED, Global Health, Psychological and Behavioural Sciences Collection and BNI were searched up to November 2020, alongside author and citation searching. NHS England, Hospice UK, National Audit Office and OpenGrey were searched as grey literature sources. Gough’s ‘Weight of Evidence’ framework was used for quality appraisal.

Results 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.

PROSPERO registration number 42019147905.

  • cultural issues
  • methodological research

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Footnotes

  • Twitter @ilk21

  • Contributors Search strategy was developed by KCD and IK. KCD and RF independently screened titles and abstracts and appraised the quality of included studies. KCD coded the data and developed descriptive themes. Coding was checked by RF and themes agreed by discussion with RF and AS. KCD wrote the final manuscript with supervision, comments and review from AS and SB.

  • Funding KCD is an Academic Clinical Fellow funded by Health Education East of England. SB is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

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