School of Nursing, University of Alabama at Birmingham (UAB), Birmingham, AL.
Center for Palliative and Supportive Care, UAB Health System, Birmingham, AL.
Palliat Support Care. 2019 Dec;17(6):643-649. doi: 10.1017/S1478951519000154.
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.
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").
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."
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.
尽管家庭照顾者在照顾患有严重、慢性疾病的个体方面发挥着关键作用，但目前还没有全国性的研究来考察家庭照顾者对姑息治疗的认识和看法。因此，我们的目的是确定美国家庭照顾者对姑息治疗的了解程度，并描述对姑息治疗的认识和看法在人口统计学上的差异。
我们使用 2018 年国家癌症研究所健康信息国家趋势调查，确定了正在照顾或为患有医疗、行为、残疾或其他疾病的人做出医疗决策的无薪家庭照顾者。受访者被问及他们对“姑息治疗”一词的了解程度，如果了解，他们对代表姑息治疗常见（错误）认知的陈述的认同程度如何（例如，“姑息治疗与临终关怀相同”）。
超过一半的照顾者（55%）“从未听说过”姑息治疗；19.2%的人知道姑息治疗是什么，并“可以向其他人解释”。在调整后的模型中，少数民族（与白人相比）和没有大学学历的人不太可能听说过姑息治疗。在了解姑息治疗的人群中，约 40%“强烈”或“有些”同意“姑息治疗与临终关怀相同”；另有 10.5%“不知道”。同样，40%的人表示，“当我想到姑息治疗时，我会自动想到死亡”。
一半的成年人严重慢性疾病的家庭照顾者从未听说过姑息治疗。即使是那些听说过姑息治疗的人，大多数人也无法将其与临终关怀和死亡区分开来。鉴于家庭照顾者在决定接受姑息治疗方面可能发挥的作用，需要开展公众宣传活动，以患者和家庭为中心的方式澄清姑息治疗服务。
