From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone

Abstract

Background: A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people’s desire for a home death, but very little is known about the challenges they face during their involvement. Aim: Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care. Design: Exploratory qualitative design; perspectives of non-kin-carers were collected through personal in-depth interviews (n = 15) retrospectively. Setting: Home care, urban and rural areas in Austria Findings: A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decision-making and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kin-carers’ steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams. Conclusion: Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved.