TY - JOUR
T1 - Family caregiving for persons with heart failure at the intersection of heart failure and palliative care
T2 - a state-of-the-science review
AU - Nicholas Dionne-Odom, J.
AU - Hooker, Stephanie A.
AU - Bekelman, David
AU - Ejem, Deborah
AU - McGhan, Gwen
AU - Kitko, Lisa
AU - Strömberg, Anna
AU - Wells, Rachel
AU - Astin, Meka
AU - Metin, Zehra Gok
AU - Mancarella, Gisella
AU - Pamboukian, Salpy V.
AU - Evangelista, Lorraine
AU - Buck, Harleah G.
AU - Bakitas, Marie A.
AU - On Behalf Of The Impact-Hf National Workgroup, Behalf Of The Impact-Hf National Workgroup
N1 - Funding Information:
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).
Funding Information:
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. Str?mberg 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).
Funding Information:
This review did not receive any direct funding support and was conducted on behalf of a national working group, Improving Palliative Care Therapies for Heart Failure Patients and Families (IMPACT-HF). The mission of IMPACT-HF is to gather leading palliative care and HF experts to set priorities for future research, policy, and practice. IMPACT-HF has received funding support from John A. Hartford Foundation Centers of Excellence in Geriatric Medicine and Geriatric Psychiatry Collaborative Pilot Project, the University of Alabama at Birmingham, the Icahn School of Medicine at Mount Sinai, and the National Palliative Care Research Center; however, none of these entities had a role in the design or conduct of this study or in the decision to submit the manuscript for publication. 2 2 2
Publisher Copyright:
© 2017, Springer Science+Business Media New York.
PY - 2017/9/1
Y1 - 2017/9/1
N2 - 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.
AB - 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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U2 - 10.1007/s10741-017-9597-4
DO - 10.1007/s10741-017-9597-4
M3 - Article
C2 - 28160116
AN - SCOPUS:85011672601
VL - 22
SP - 543
EP - 557
JO - Heart Failure Reviews
JF - Heart Failure Reviews
SN - 1382-4147
IS - 5
ER -