Family carers providing support to a person dying in the home setting: A narrative literature review

Abstract

Background: This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how to best support them. Aim: The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home. Design: A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, ‘terminal care’, ‘supportive care’, ‘end of life care’, ‘palliative care’, ‘domiciliary care’ AND home AND death OR dying. Data sources: During April–May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focusing on family carers providing end-of-life care in the home and those published between 2000 and 2013. Results: A total of 28 studies were included. The overarching themes were family carers’ views on the impact of the home as a setting for end-of-life care, support that made a home death possible, family carer’s views on deficits and gaps in support and transformations to the social and emotional space of the home. Conclusion: Many studies focus on the support needs of people caring for a dying family member at home, but few studies have considered how the home space is affected. Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services.