Article Text

The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence
  1. Caroline Woodman1,
  2. Jessica Baillie2 and
  3. Stephanie Sivell3
  1. 1Cardiff University School of Medicine, Cardiff, UK
  2. 2School of Healthcare Sciences, Cardiff University, Cardiff, UK
  3. 3Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK
  1. Correspondence to Dr Stephanie Sivell, Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Neuadd Meirionnydd, Heath Park, Cardiff CF14 4YS, UK; sivells2{at}cf.ac.uk

Abstract

Background Home is often reported as the preferred place of care for patients at the end-of-life. The support of family caregivers is crucial if this is to be realised. However, little is known about their preferences; a greater understanding would identify how best to support families at the end-of-life, ensuring more patients are cared for in their preferred location.

Objectives To systematically search and synthesise the qualitative literature exploring the preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life.

Methods Ten databases (MEDLINE, PsycINFO, EMBASE, AMED, ASSIA, CINAHL, Social Care Online, Cochrane Database, Scopus, Web of Science) and reference lists of key journals were searched up to January 2014. Included studies were appraised for quality and data thematically synthesised.

Results Eighteen studies were included; all were of moderate or high quality. Two main themes were identified: (1) Preferences and perspectives: most family caregivers preferred home care, although a range of perspectives were reported. Both positive and negative perspectives of home, hospices and hospitals emerged. At times, family caregivers reported feeling obligated to provide home care. (2) Impact of facilitating home care; both positive and negative effects on family caregivers were reported.

Conclusions Many family caregivers reported home as the preferred place of care; other places of care were infrequently considered. Healthcare professionals and service providers should be aware of these preferences and provide support where needed to enable family caregivers to successfully care at home, thus improving end-of-life experiences for families as a whole.

  • Palliative care
  • Family caregiving
  • Home care
  • End-of-life preferences
  • Systematic review

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

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  • Contributors CW was responsible for managing the project, undertook the systematic search, analysed the data and drafted the manuscript. JB and SS were responsible for the overall study conception and study design, analysed the data and drafted the manuscript. All authors approved the final manuscript.

  • Funding This study was undertaken as part of lead author's research project for her intercalated BSc in Clinical Epidemiology at Cardiff University. This work was supported by Marie Curie Cancer Care core grant funding to the Marie Curie Palliative Care Research Centre, Cardiff based at Cardiff University School of Medicine (grant reference MCCC-FCO-14-C). Dr Stephanie Sivell's post is supported by Marie Curie Cancer Care core grant funding (grant reference MCCC-FCO-14-C). During the completion of the project, Dr Jessica Baillie was funded by National Institute for Health Research (NIHR) Health Technology Assessment (HTA) clinical trial (ALICAT ref. 10/145/01).

  • Competing interests None.

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