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Systematic review
Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis
  1. Katharina Theodora Silies1,
  2. Sascha Köpke2 and
  3. Rieke Schnakenberg3
  1. 1 Institute for Social Medicine and Epidemiology, University of Lübeck, Lubeck, Germany
  2. 2 Institute of Nursing Science, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany
  3. 3 Department 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}uksh.de

Abstract

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.

https://doi.org/10.1136/bmjspcare-2021-003095

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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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    Footnotes

    • 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.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.