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Systematic review
Existential distress in family caregivers: scoping review of meaning-making interventions
  1. Natalie S McAndrew1,2,
  2. Tamryn F Gray3,4,
  3. Lyndsey Wallace5,
  4. Kelly Calkins6,
  5. Jill Guttormson6,
  6. Eric S Harding7 and
  7. Allison J Applebaum8,9
  1. 1 School of Nursing, College of Health Professions & Sciences, University of Wisconsin-Milwaukee, Milwaukee, Wisconsin, USA
  2. 2 Department of Patient Care Research, Froedtert & the Medical College of Wisconsin, Froedtert Hospital, Milwaukee, Wisconsin, USA
  3. 3 Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
  4. 4 Harvard Medical School, Boston, Massachusetts, USA
  5. 5 Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin, USA
  6. 6 College of Nursing, Marquette University, Milwaukee, Wisconsin, USA
  7. 7 Medical College of Wisconsin Libraries, Medical College of Wisconsin, Milwaukee, Wisconsin, USA
  8. 8 Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  9. 9 Department of Psychiatry, Weill Cornell Medicine, New York, New York, USA
  1. Correspondence to Dr Natalie S McAndrew, University of Wisconsin-Milwaukee, School of Nursing, College of Health Professions & Sciences, 1921 East Hartford Avenue, Milwaukee, Wisconsin 53211, USA; mcandre3{at}uwm.edu

Abstract

Objectives Family and friend caregivers often feel overwhelmed by and ill-prepared for their responsibilities. Many feel helpless living with uncertainty about the outcome of the patient’s illness, which leads to existential distress. Supportive care interventions that address existential distress by promoting meaning and purpose buffer the negative effects of caregiver burden and promote resilience and growth. The purpose of this scoping review is to describe the depth and breadth of available interventions targeting caregiver existential distress.

Methods We followed the Joanna Briggs Institute’s scoping review methods and applied the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension checklist. SCOPUS, Ovid MEDLINE and PsycINFO databases were searched for interventions that targeted existential distress by promoting meaning-making, spiritual well-being, post-traumatic growth and/or benefit finding for caregivers of seriously ill adult patients.

Results We screened 1377 titles/abstracts and 42 full-text articles. Thirty-one articles (28 unique studies) met inclusion criteria. Most interventions were designed for caregivers supporting patients with cancer (n=14) or patients receiving palliative care (n=9). Promising interventions included Meaning-Centered Psychotherapy for Cancer Caregivers, Meaning-Based Intervention for Patients and their Partners, Legacy Intervention for Family Enactment, Family Participatory Dignity Therapy and Existential Behavioural Therapy. More than half of the studies (n=20, 64%) were in the feasibility/acceptability/pilot stage of intervention testing.

Conclusion Large randomised controlled trials with more diverse samples of caregivers are needed. Future research should explore the impact of delivering meaning-making interventions to caregivers throughout the illness trajectory. Developing strategies for scaling up and conducting cost analyses will narrow the research and practice gap for meaning-making interventions.

  • Bereavement
  • Cancer
  • Psychological care
  • Spiritual care
  • Supportive care
  • Quality of life

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

https://doi.org/10.1136/spcare-2023-004448

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information.

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    Footnotes

    • Twitter @nursenatalie27

    • Contributors NSM and AJA conceptualised the project. All authors developed the scoping review questions and inclusion criteria. ESH developed the search strategy for each database and managed citations in Zotero and Rayyan. NSM led article screening and data extraction. NSM, TG, LW, KC, JG all contributed to screening, data extraction and data analysis. NSM led manuscript development and all authors contributed to manuscript review and refinement. All authors approved the final manuscript and are responsible for the content presented in the published review as guarantors.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests We have no conflicts of interest to report related to the completion of this project. Dr. AJA receives support from Blue Note Therapeutics and Beigene. Dr. NSM and Dr. TG are Cambia Health Foundation Sojourns Scholars.

    • 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.