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Challenges to discussing palliative care with people experiencing homelessness: a qualitative study
  1. Briony F Hudson1,2,
  2. Caroline Shulman1,2,3,
  3. Joseph Low2,
  4. Nigel Hewett1,
  5. Julian Daley1,
  6. Sarah Davis2,
  7. Nimah Brophy4,
  8. Diana Howard5,
  9. Bella Vivat2,
  10. Peter Kennedy1,4,
  11. Patrick Stone2
  1. 1Pathway, London, UK
  2. 2Marie Curie Palliative Care Research Department, Division of Psychiatry, UCL, London, UK
  3. 3Kings Health Partners, Kings College Hospital, London, UK
  4. 4St Mungos, London, UK
  5. 5Coordinate My Care, The Royal Marsden NHS Foundation Trust, London, UK
  1. Correspondence to Professor Patrick Stone; p.stone{at}ucl.ac.uk

Abstract

Objectives To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care

Setting Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs.

Participants People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10).

Methods In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions.

Results 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact.

Conclusions This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.

  • homeless persons
  • focus groups
  • end of life care
  • qualitative
  • substance related disorders
  • palliative care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors CS, PS, SD and JL conceptualised the study. CS, BH, JD, BV and PK collected the data. BH and CS analysed the data. BH drafted the initial manuscript. CS, PS, JL, NH, DH, JD, BV, PK, SD and NB reviewed the manuscript, approved the final manuscript and agree to be accountable for all aspects of the work.

  • Funding Initial seed funding and support for this research was provided by Coordinate My Care to facilitate CS in the development of this research, following which a grant was obtained from The Oak Foundation (OCAY-14-574) to support BH’s post. Professor Paddy Stone – Marie Curie Chair in Palliative and End of life care is supported by Marie Curie Chair’s grant – 509537 BV – Senior Research Associate is supported by Marie Curie Chair’s grant – 509537 JL – Senior Research Fellow is supported by Marie Curie Programme and Core grants (50% Programme; 50% Core) – 531645 (Programme) and 531477 (Core) SD– Research Nurse is supported by Marie Curie Programme grant – 531645. NH and JD are Pathway Employees. NB is employed by St Mungos.

  • Competing interests None declared.

  • Ethics approval Ethical approval was obtained from the Research Ethics Committee of University College London (reference-6927/001).

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

  • Data sharing statement No additional data are available for this article.

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