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Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis
  1. Katharina Theodora Silies1,
  2. Sascha Köpke2 and
  3. Rieke Schnakenberg3
  1. 1Institute for Social Medicine and Epidemiology, University of Lübeck, Lubeck, Germany
  2. 2Institute of Nursing Science, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany
  3. 3Department for Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany
  1. Correspondence to Katharina Theodora Silies, Institute for Social Medicine and Epidemiology, University of Lübeck, Lubeck 23562, Germany; katharina.silies{at}


Background Advance care planning (ACP) is a communication process about a person’s values, life goals and preferences for current and future treatment and care. It can improve end-of-life care experiences for care recipients as well as for family caregivers. Knowledge about caregivers’ needs might support implementation of ACP interventions suitable to both care recipients and their caregivers.

Objective To explore the experiences and attitudes of informal family caregivers, and their knowledge, regarding ACP.

Methods A systematic literature search was conducted (participants: family caregivers; intervention: advance care planning; databases: MEDLINE, PsycINFO, CINAHL, Cochrane Library). Thematic synthesis was applied to qualitative and mixed methods studies; quantitative studies were described in relation to the themes of the meta-synthesis.

Results 57 studies were included, of these 51 in the meta-synthesis. Three themes emerged: (1) caregiver’s individual conceptualisation of ACP, (2) caregiver’s relationships and (3) ACP process. These themes were incorporated into a longitudinal perspective on the caregiver’s ACP trajectory, encompassing the phases (A) life before, (B) ACP process, (C) utilisation of ACP and (D) life after. The implications for ACP activities are described according to each phase.

Conclusion For the benefit of care recipients, healthcare professionals should carefully consider caregivers’ conceptualisations of ACP as well as the relationships within the family. They need to be skilled communicators, sensitive to individual needs and equipped with sufficient time resources to tailor ACP interventions to their clients’ unique situation. Thus, they will support decision-making according to care recipients’ wishes, caregivers’ end-of-life experience and their life after bereavement.

PROSPERO registration number CRD42018082492.

  • communication
  • end of life care
  • ethics
  • family management
  • home care

Data availability statement

Data sharing is not applicable as no datasets were generated or analysed for this study.

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Data availability statement

Data sharing is not applicable as no datasets were generated or analysed for this study.

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  • Funding The study is funded by the German Federal Ministry of Education and Research (BMBF grant 01GL1707A-D). Funders will not interfere at any stage of the study design and research process.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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