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

  • J. Nicholas Dionne-Odom (a1) (a2), Katherine A. Ornstein (a3) and Erin E. Kent (a4) (a5)
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.

Copyright
Corresponding author
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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Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
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