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
Article
  • 306 Downloads

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.

Keywords

Heart failure Family caregiving Palliative care 

Supplementary material

10741_2017_9597_MOESM1_ESM.docx (98 kb)
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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