Background Advance Care Planning (ACP) is a communication process about a person’s preferences for treatment and care in case of physical or mental deterioration, when the person is unable to express these wishes. Trained health professionals act as facilitators and relatives may be involved. The aim of our review is to explore the experiences and attitudes of informal caregivers, and their knowledge regarding ACP.
Methods A systematic literature search was conducted (participants: informal caregivers, intervention: advance care planning; databases: MEDLINE, PsycINFO, CINAHL, Cochrane Library). Eligible studies were assessed by two independent reviewers. Quality appraisal was conducted using the Critical Appraisal Skills Programme (CASP) checklists. Thematic synthesis was applied for qualitative studies. Results from quantitative studies were associated to the meta categories of the thematic synthesis.
Results 41 studies met the inclusion criteria, of which 37 qualitative studies were included in the thematic synthesis. Major themes found were: “ACP-structures”, “Roles and Relationships”, “Perceptions of ACP”, “Caregivers’ Knowledge”, “Attitudes”. Barriers to and facilitators for ACP from the viewpoint of caregivers were described following the structure of the major themes. The importance of caregivers’ role perceptions and the mutual influence of ACP and family relationships were highlighted.
Conclusion It is widely accepted, that ACP interventions have to take caregivers’ points of view into account. Our review provides a rich description of caregivers’ experiences, knowledge, attitudes, and needs regarding ACP. The results will support the development of patient- and family-centred ACP interventions and of instruments that measure effects of these interventions in caregivers.
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