Heart Failure Reviews

, Volume 22, Issue 5, pp 543–557 | Cite as

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

  • J. Nicholas Dionne-Odom
  • Stephanie A. Hooker
  • David Bekelman
  • Deborah Ejem
  • Gwen McGhan
  • Lisa Kitko
  • Anna Strömberg
  • Rachel Wells
  • Meka Astin
  • Zehra Gok Metin
  • Gisella Mancarella
  • Salpy V. Pamboukian
  • Lorraine Evangelista
  • Harleah G. Buck
  • Marie A. Bakitas
  • On behalf of the IMPACT-HF National Workgroup


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.


Heart failure Family caregiving Palliative care 



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).

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Supplementary material

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ESM 1 (DOCX 98.5 kb)


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Copyright information

© Springer Science+Business Media New York 2017

Authors and Affiliations

  • J. Nicholas Dionne-Odom
    • 1
  • Stephanie A. Hooker
    • 2
  • David Bekelman
    • 3
  • Deborah Ejem
    • 1
  • Gwen McGhan
    • 1
  • Lisa Kitko
    • 4
  • Anna Strömberg
    • 5
  • Rachel Wells
    • 1
  • Meka Astin
    • 6
  • Zehra Gok Metin
    • 7
  • Gisella Mancarella
    • 1
  • Salpy V. Pamboukian
    • 8
  • Lorraine Evangelista
    • 9
  • Harleah G. Buck
    • 10
  • Marie A. Bakitas
    • 1
  • On behalf of the IMPACT-HF National Workgroup
  1. 1.School of NursingUniversity of Alabama at BirminghamBirminghamUSA
  2. 2.Department of PsychologyUniversity of Colorado, DenverDenverUSA
  3. 3.Veterans Affairs Eastern Colorado Health Care System, Department of Medicine, Anschutz Medical CampusUniversity of Colorado School of MedicineDenverUSA
  4. 4.College of NursingPennsylvania State UniversityUniversity ParkUSA
  5. 5.Department of Medical and Health Sciences, Division of NursingCampus University Hospital, Linköping UniversityLinköpingSweden
  6. 6.School of Public HealthUniversity of Alabama at BirminghamBirminghamUSA
  7. 7.Department of Internal Medicine NursingHacettepe UniversityAnkaraTurkey
  8. 8.Division of Cardiovascular Diseases, Department of MedicineUniversity of Alabama at BirminghamBirminghamUSA
  9. 9.Program in Nursing ScienceUniversity of California, IrvineIrvineUSA
  10. 10.College of NursingUniversity of South FloridaTampaUSA

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