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Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)
  1. Jackie Pottle1,
  2. Julia Hiscock2,
  3. Richard D Neal3 and
  4. Marlise Poolman2
  1. 1Specialist Palliative Care Team, Betsi Cadwaladr University Health Board (Central Area), Bodelwyddan, UK
  2. 2North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK
  3. 3Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  1. Correspondence to Dr Marlise Poolman, North Wales Centre for Primary Care Research (Bangor University), Cambrian 2, Wrexham Technology Park, Wrexham, LL13 7YP, UK; m.poolman{at}bangor.ac.uk

Abstract

Objectives Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: ‘How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)?

Methods A qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death. The semistructured interviews were audio recorded, transcribed verbatim and analysed using Framework.

Results We found that the home environment enabled normality, a sense of control and individualised care which family carers often perceived as contributing towards a good death. However, the home environment created challenges for both family carers and HCPs, due to the differing and at times conflicting needs of the dying person and their family carers.

Conclusions We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life.

  • Home care
  • Terminal care
  • Dying
  • Qualitative

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Footnotes

  • Contributors JP conducted the interviews and analysed the data. JH supported JP in data interpretation, in preparation of a data interpretation workshop attended by all authors. JP was responsible for drafting the manuscript and all authors approved the final manuscript. All authors were responsible for the overall study conception and study design.

  • Funding This work was funded by the Betsi Cadwaladr University Health Board through its Academic Support Programme.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval North Wales Research and Ethics Committee.

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

  • Data sharing statement No additional data are available.

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