Durham Veteran Affairs Medical Center, Durham, North Carolina, USA; Duke University Sanford School of Public Policy, Durham, North Carolina, USA; Duke-Margolis Center for Public Policy, Durham, North Carolina, USA.
Four Seasons Hospice and Palliative Care, Flat Rock, North Carolina, USA.
J Pain Symptom Manage. 2018 Dec;56(6):951-956. doi: 10.1016/j.jpainsymman.2018.08.007. Epub 2018 Aug 25.
Palliative care (PC) model delivered by two large hospices and PC providers.
To understand study participants' knowledge of PC and acceptability of a new community-based PC model.
Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach.
Across 10 interviews and four focus groups (n = 4-10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services.
Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.
由两家大型临终关怀机构和临终关怀服务提供商提供的姑息治疗（PC）模式。
了解研究参与者对 PC 的了解程度以及对新的基于社区的 PC 模式的可接受性。
对患者和护理人员进行半结构化访谈；对纳税人进行焦点小组讨论。采用归纳法进行描述性内容分析。
在 10 次访谈和 4 次焦点小组（每组 4-10 人）中，参与者对 PC 的了解程度各不相同。访谈和焦点小组参与者的知识存在差距，涉及了解 PC 中可用的服务、PC 的支付方式、如何启动 PC 以及 PC 如何影响患者与现有提供者的关系。关于该模式，访谈参与者的负面反馈包括 PC 没有得到充分解释，以及 PC 提供者被视为顾问，而不是全职提供者。焦点小组参与者表示，该模式听起来很有前途，但指出在我们当前的医疗保健系统中实施该模式可能存在困难。访谈参与者的积极反馈包括临床医生为患者和家属花费更多时间并提供更多支持的看法，以及 PC 服务能够更广泛地提供护理，而不仅仅是在生命的末期。焦点小组参与者对护理的关注度和更广泛地应用 PC 也有类似的看法。一些接受 PC 服务的患者仍然认为护理是时间受限的，提供者与患者的沟通也不理想。
需要对患者、护理人员和社区成员进行有关 PC 的角色和益处的教育，以便成功扩大基于社区的 PC。
