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2025 (English)In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524Article, review/survey (Refereed) Epub ahead of print
Abstract [en]
Extensive research reports caregiver burden and unmet needs when caring for a home-dwelling family member at the end of life. Interventions are often decided by professionals and are less focused on family carers. There remains a gap in understanding family carers' preferences for support in their caregiving role. This integrative review summarises family carers' preferences for support when caring for a home-dwelling family member at the end of life. We examined what helps family carers cope and the impact of the organisation of end-of-life care on their experiences. Seven databases were searched between January 2011 and March 2024. Thirty-seven articles were included in this review. Data were thematically analysed. 'Care continuity' at the end-of-life features prominently and underpins four themes: (1) Family carers see themselves as a partner in care to ensure their loved one's needs were prioritised; (2) balancing the needs of their loved one alongside their caregiving responsibilities and attending to their own psychosocial needs was challenging; (3) timeliness of access to information, knowledge and appropriate services through the illness trajectory and shared decision-making were important in helping them cope; and (4) preparedness when death was imminent in terms of dealing with the dying process and support beyond bereavement. 'Care continuity' can be conceptualised as personal and relational continuity (at microlevel, it is about individuals building relationships with healthcare professionals through recognising their carer's role, access to contactable and knowledgeable staff and agreed care plan), informational continuity (micro- and mesolevel refer to effective transfer of information and knowledge between individuals and between services) and organisational continuity (mesolevel is about organised and coordinated care, early involvement of specialist palliative care and bereavement support). Health professionals should recognise that meeting the needs of family carers is inextricably linked to addressing the needs of their loved ones.
Keywords
end-of-life care, family caregivers, home, integrative review, palliative care, preferences
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-107883 (URN)10.1155/hsc/5087712 (DOI)001631072800001 ()2-s2.0-105024004480 (Scopus ID)
2025-12-152025-12-152026-01-08Bibliographically approved