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What do family caregivers know about palliative care? Results from a national survey

Published online by Cambridge University Press:  08 April 2019

J. Nicholas Dionne-Odom Open the ORCID record for J. Nicholas Dionne-Odom [Opens in a new window] ,
Katherine A. Ornstein  and
Erin E. Kent Open the ORCID record for Erin E. Kent [Opens in a new window]
J. Nicholas Dionne-Odom*
Affiliation:
School of Nursing, University of Alabama at Birmingham (UAB), Birmingham, AL Center for Palliative and Supportive Care, UAB Health System, Birmingham, AL
Katherine A. Ornstein
Affiliation:
Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY
Erin E. Kent
Affiliation:
Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control & Population Science, National Cancer Institute, Bethesda, MD ICF International, Fairfax, VA
*
Author for correspondence: J. Nicholas Dionne-Odom, School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, NB 485J, Birmingham, AL 35294. E-mail: dionneod@uab.edu
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Abstract

Objective

Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.

Method

Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).

Result

More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”

Significance of results

One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Keywords

Family caregiverPalliative careHospiceCaregivingCarer
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 6 , December 2019 , pp. 643 - 649
Copyright
Copyright © Cambridge University Press 2019 

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