What do unpaid carers find helps or hinders their resilience when providing end of life care at home in the United Kingdom- findings of a scoping review

Gould, Samantha (2024). What do unpaid carers find helps or hinders their resilience when providing end of life care at home in the United Kingdom- findings of a scoping review. In: BMJ Supportive & Palliative Care, BMJ, 14, article no. A13.

DOI: https://doi.org/10.1136/spcare-2024-mcr.30

Abstract

Introduction The number of people choosing to die at home in the United Kingdom (UK) is increasing1 and this trend is expected to continue.2 Support from family or friends is fundamental to people dying at home3 and is relied upon by both the dying person and health and social care services.4 Understanding what these unpaid carers themselves find impacts their resilience or ability to continue to care despite the potential adversity they are experiencing is essential if services are to adequately support unpaid carers.
Aims To identify current UK based studies exploring the factors that impact unpaid carer resilience when caring for someone nearing the end of life.
Methods A scoping review design was used to map and chart current literature. Seven databases were searched. Literature was limited by date, geographical area, language, research type and phase of disease progression.
Results 647 articles were identified with 11 articles meeting the inclusion criteria. Two studies focused on resilience and nine focused on coping. Studies used data collected between 2009 and 2014 and relied on recollections of bereaved carers (n=9). No studies identified solely explored the experiences of people currently caring for someone nearing the end of life at home. Three categories of factors were identified in the studies as impacting an unpaid carers resilience or coping, with organisational factors being most frequently identified.
Conclusion There is a lack of UK based research which focuses on factors that impact the resilience of unpaid carers currently caring for someone nearing the end of life at home.
Impact Further research into the resilience of current unpaid carers will enable future service provision to promote and support unpaid carer resilience. Supporting unpaid carers effectively will positively impact the experiences and wellbeing of both the carer and the cared for.

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