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Open Access Study protocol

The perspectives of bereaved family carers on dying at home: the study protocol of ‘unpacking the home: family carers’ reflections on dying at home

Sheila Payne1*, Sarah Brearley1, Christine Milligan2, David Seamark3, Carol Thomas2, Xu Wang4, Susan Blake3 and Mary Turner1

Author Affiliations

1 International Observatory on End of Life Care, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, LA1 4YT, United Kingdom

2 Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, LA1 4YT, United Kingdom

3 Honiton Group Practice, Marlpits Lane, Honiton, Devon, EX14 2NY, United Kingdom

4 Department of Psychology, Leeds Metropolitan University, Leeds, LS1 3HE, United Kingdom

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BMC Palliative Care 2012, 11:23  doi:10.1186/1472-684X-11-23

Published: 22 November 2012

Abstract

Background

Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the ‘Unpacking the home’ study aims to gain an in-depth understanding of ‘home’ and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study.

Methods/design

A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage.

Discussion

This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life.

Keywords:
Informal caregivers; Palliative care; Home; Qualitative methods; Interviews; End of life