Family Carers Preferences for Support When Caring for a Family Member at the End of Life at Home: An Integrative Literature Review

To explore family carers preferences for support when caring for a loved one at the end of life in their own home. To examine what helps family carers cope and the impact of the organisation of end-of-life care on their experiences. Integrative literature review. Ten databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, PsycINFO, AMED, ASSIA, TRIP, ISI Web of Science and Scopus) were searched between 2000 and October 2016. MeSH and keywords used were: (‘Palliative care' or ‘terminal care' or ‘supporting care' or ‘end of life care' or ‘domiciliary care' or ‘anticipatory care' or ‘advanced care planning' or death or dying) and (Home) and (family or carers or caregivers) and (preferences or experiences or satisfaction or support). Screening of titles and abstracts, data extraction and quality appraisal was performed by four pairs of reviewers. Thematic analysis was a continuous, reflective and reflexive process involving all team members. 5348 titles and abstracts were screened and 74 articles were included in the final analysis. Family carers viewed themselves as being a partner in care and the key was ensuring their loved one's needs were prioritised. Balancing the needs of their loved one with the support available alongside meeting their own psychosocial needs was challenging. Timeliness of access to support of knowledgeable staff and appropriate services, transitions through the illness trajectory and shared decision making were important in helping them cope. Family carers, alongside their loved ones, prefer to be involved in planning and deciding about care at home. They need information about how the illness trajectory might develop and the support and services available to help them in a timely manner. Health Care Professionals should recognise that meeting the needs of family carers is inextricably linked to addressing the needs of their loved ones.