Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.
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.
School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA. dionneod@uab.edu.
J
J
Nicholas Dionne-Odom
Department of Psychology, University of Colorado, Denver, Campus Box 173, PO Box 173364, Denver, CO, 80217, USA.
Stephanie A
SA
Hooker
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
D
Bekelman
School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA.
Deborah
D
Ejem
School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA.
Gwen
G
McGhan
College of Nursing, Pennsylvania State University, 201 Nursing Sciences Building, University Park, PA, 16802, USA.
Lisa
L
Kitko
Department of Medical and Health Sciences, Division of Nursing, Campus University Hospital, Linköping University, Building 511-001, 581 85, Linköping, Sweden.
Anna
A
Strömberg
School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA.
Rachel
R
Wells
School of Public Health, University of Alabama at Birmingham, 1720 2nd Avenue South, Birmingham, AL, 35294, USA.
Meka
M
Astin
Department of Internal Medicine Nursing, Hacettepe University, 06100, Ankara, Turkey.
Zehra Gok
ZG
Metin
School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA.
Gisella
G
Mancarella
Division of Cardiovascular Diseases, Department of Medicine, University of Alabama at Birmingham, 1900 University Blvd, THT 321, Birmingham, AL, 35294, USA.
Salpy V
SV
Pamboukian
Program in Nursing Science, University of California, Irvine, 299E Berk Hall, Irvine, CA, 92697-3959, USA.
Lorraine
L
Evangelista
College of Nursing, University of South Florida, 12901 Bruce B. Downs Blvd. MDC22, Tampa, FL, 33612-4766, USA.
Harleah G
HG
Buck
School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA.
Marie A
MA
Bakitas
D017028:Caregivers / Q000523:psychology*; D006333:Heart Failure / Q000523:psychology* / Q000628:therapy; D006801:Humans; D010166:Palliative Care / Q000523:psychology*; D011788:Quality of Life; D011795:Surveys and Questionnaires
Family caregiving; Heart failure; Palliative care