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Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

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Abstract

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms “heart failure” AND “caregiver.” Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients’ unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

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Acknowledgments

The authors would like to gratefully acknowledge Allison Monaco, Jakira Myers, and Amanda Segars for assisting with study abstraction. Dr. Dionne-Odom is supported by the National Institute for Nursing Research (1K99NR015903), the National Palliative Care Research Center, and the American Cancer Society (RSG PCSM – 124668). Dr. Bekelman is funded by VA HSR&D IIR 14-346. Dr. Ejem is supported by a Research Supplement to Promote Diversity in Health Research (R01 NR013665-01A1). Ms. Wells is supported by a Robert Wood Johnson Foundation Future of Nursing Scholarship. Dr. Strömberg is supported by the Swedish Research Council for Health, Working Life and Welfare (2014-4100), and the Swedish Research Council for Medicine and Health (K2015-99X-22124-04-4). Dr. Evangelista is supported by the National Heart, Lung, and Blood Institute (1R01HL093466-01). Dr. Bakitas is supported by the National Institute for Nursing Research (R01 NR013665-01A1) and the American Cancer Society (#RSG PCSM – 124668).

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Authors and Affiliations

  1. School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA

    J. Nicholas Dionne-Odom, Deborah Ejem, Gwen McGhan, Rachel Wells, Gisella Mancarella & Marie A. Bakitas

  2. Department of Psychology, University of Colorado, Denver, Campus Box 173, PO Box 173364, Denver, CO, 80217, USA

    Stephanie A. Hooker

  3. Veterans Affairs Eastern Colorado Health Care System, Department of Medicine, Anschutz Medical Campus, University of Colorado School of Medicine, 1055 Clermont Street, Research 151, Denver, CO, 80220, USA

    David Bekelman

  4. College of Nursing, Pennsylvania State University, 201 Nursing Sciences Building, University Park, PA, 16802, USA

    Lisa Kitko

  5. Department of Medical and Health Sciences, Division of Nursing, Campus University Hospital, Linköping University, Building 511-001, 581 85, Linköping, Sweden

    Anna Strömberg

  6. School of Public Health, University of Alabama at Birmingham, 1720 2nd Avenue South, Birmingham, AL, 35294, USA

    Meka Astin

  7. Department of Internal Medicine Nursing, Hacettepe University, 06100, Ankara, Turkey

    Zehra Gok Metin

  8. Division of Cardiovascular Diseases, Department of Medicine, University of Alabama at Birmingham, 1900 University Blvd, THT 321, Birmingham, AL, 35294, USA

    Salpy V. Pamboukian

  9. Program in Nursing Science, University of California, Irvine, 299E Berk Hall, Irvine, CA, 92697-3959, USA

    Lorraine Evangelista

  10. College of Nursing, University of South Florida, 12901 Bruce B. Downs Blvd. MDC22, Tampa, FL, 33612-4766, USA

    Harleah G. Buck

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Nicholas Dionne-Odom, J., Hooker, S.A., Bekelman, D. et al. Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review. Heart Fail Rev 22, 543–557 (2017). https://doi.org/10.1007/s10741-017-9597-4

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