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End-of-life care for the British Asian Hindu Community: Preferences and Solutions
  1. Sarah Frearson,
  2. Jane Henderson,
  3. Bharti Raval,
  4. Charles Daniels,
  5. Geraldine Burke,
  6. Jonathan Koffman
  1. Dr Sarah Frearson, Specialist Registrar in Palliative Medicine, Michael Sobell House, Mount Vernon Hospital, Rickmansworth, Northwood, Dr Jane Henderson, Specialist Registrar in Palliative Medicine, Hertfordshire Community NHS Trust, Palliative Care Service, Hemel Hempstead, Miss Bharti Raval, previously Hospice at Home Facilitator, St Luke’s Hospice, Kenton, Dr Charles Daniels, Medical Director, St Luke’s Hospice, Kenton, Ms Geraldine Burke, Director of Patient Services, St Luke’s Hospice, Kenton, Middlesex, and Dr Jonathan Koffman, Senior Lecturer in Palliative Care, MSc Co-ordinator and Sub Dean of Taught Postgraduate Studies, School of Medicine, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London. Email: sarahfrearson{at}doctors.org.uk or janeyhen{at}doctors.org.uk
  2. Contributions to research: CD, JK, JH and SF designed the study. BR set up and facilitated the focus groups and translated the transcripts. JH and SF analysed the data, supervised by JK. SF, JH and JK drafted the manuscript. JK is the guarantor

Abstract

Background: In the UK, most people prefer to die at home but many still die in hospital. People from black, Asian and minority ethnic groups are even more likely to die in hospital. Little is known about their preferences for location of care at the end of life. Aim: To explore preferences for place of care and death among the British Hindu community and to identify barriers preventing the British Hindu community achieving their preferences for place of care and death. Methods: The study used focus groups comprising Indian Hindus living in London. Analysis was undertaken using the framework approach. Results: A total of 14 Indian Hindus participated in two focus groups. Three main themes emerged: home as the best place for end-of-life care; priorities for end-of-life care; and barriers to caring for a loved one at home. Important priorities included filial piety, which was viewed as essential in the delivery of practical and emotional care at the end of life. The multiple barriers included: (i) little knowledge of palliative care or hospice; (ii) language and cultural barriers that hampered accessing support from statutory services; (iii) conflict between traditional Hindu culture and modernity; (iv) difficulties in families becoming caregivers; and (v) a reluctance to ask for help at critical moments. Conclusion: This study adds to an emerging and important literature highlighting the complex challenges in realising home deaths among an ageing minority community. The researchers recommend that public health initiatives are developed to raise the profile of palliative care and that service providers place a greater emphasis on identifying and valuing the social capital present among the Hindu community. Implementation of these recommendations will enable more people who wish to die at home to do so. Conflicts of interest: none. This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors

  • End of life
  • Ethnicity
  • Palliative care
  • Place of death

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