Family members' experiences of end-of-life care in the home: a systematic review and qualitative content analysis

Background: In recent years, healthcare policy and reform in England has advocated for community care services that enable people to live well and die well at home.

Aim: This article is a systematic review that sought to determine the characteristics of a positive experience of home-based, end-of-life care, as perceived by family members.

Methods: A combined strategy of electronic and hand searching yielded 11 qualitative studies of European, Australasian and North American origin. The findings were analysed using directed content analysis. Four of the six national Ambitions for Palliative and End-of-Life Care in England were used as the coding framework.

Findings: Nine categories were developed from the data to provide a concise, synthesised summary of existing research. Continuity of care, needs-based care and caring and capable staff were dominant category findings. In contrast, accounts of care and support after death were sparse.

Implications for practice: Investment in the community nursing workforce and services is essential for the delivery of high quality end-of-life care. It is important to recognise, involve and resource family carers, ensuring continuity and coordination of care and needs-based support before and after death.

Conclusions: Further contemporary and contextual research is required to understand and inform the current and future provision of pre- and post-death patient and family care in the home.