背景:护理目标讨论(GOCD)在痴呆症患者(PLWD)中并不常见,尽管该人群可能最终丧失决策能力。Jumpstart指南,现有的重病通信启动工具,可以改善某些人群的GOCD,但以前尚未在PLWD及其护理人员中使用。
方法:使用以人为本的设计(HCD),我们修改了Jumpstart指南,以便与PLWD及其护理人员一起使用。我们对PLWD的临床医生和护理人员进行了定性访谈。六名团队成员对访谈进行了定性快速分析,从而开发了摘要模板和综合矩阵。Jumpstart指南的四次迭代导致了最终版本。
结果:对13名临床医生和11名护理人员进行了访谈。访谈提供了有关PLWD及其护理人员在GOCD期间面临的独特障碍的关键见解,包括接受痴呆症诊断的不适,以及使用“严重疾病”来描述痴呆症的担忧,正如通常在姑息治疗中所做的那样。与其他严重疾病相比,临床医生描述了GOCD与PLWD的差异,以及让患者和家属思考未来健康状况的挑战。访谈导致了以下领域的Jumpstart指南改编:(1)格式和结构,(2)内容,(3)特定语言。建议的更改包括优先命名决策者,更改对话提示以提高可访问性和可理解性,确保Jumpstart指南可用于患者及其护理人员,并改变语言以避免提及“严重疾病”和“能力”。
结论:使用HCD从临床医生和护理人员那里获得了关于PLWD及其护理人员进行GOCD的独特障碍的有价值的见解。这些见解用于调整Jumpstart指南,以便与PLWD及其护理人员一起使用,目前正在门诊诊所的一项实用随机对照试验中进行测试。
BACKGROUND: Goals-of-care discussions (GOCD) are uncommon in persons living with dementia (PLWD) despite the likelihood of eventual loss of decisional capacity in the population. The Jumpstart Guide, an existing serious illness communication priming tool, can improve GOCD in certain populations, but has not previously been adapted for use among PLWD and their caregivers.
METHODS: Using human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians and caregivers of PLWD. Six team members conducted qualitative rapid analysis of interviews leading to the development of summary templates and integrative matrices. Four iterations of the Jumpstart Guide led to the final version.
RESULTS: Thirteen clinicians and 11 caregivers were interviewed. Interviews provided key insights into the unique barriers PLWD and their caregivers face during GOCD, including discomfort with accepting a dementia diagnosis and concern with using \"serious illness\" to describe dementia, as is commonly done in palliative care. Clinicians described differences in GOCD with PLWD compared to other serious illnesses, and the challenge of getting patients and families to think about future health states. Interviews led to Jumpstart Guide adaptations in the following domains: (1) format and structure, (2) content, and (3) specific language. Suggested changes included prioritizing naming a decision-maker, changing conversation prompts to improve accessibility and understandability, ensuring the Jumpstart Guide could be used with patients as well as their caregivers, and altering language to avoid references to \"serious illness\" and \"abilities.\"
CONCLUSIONS: Using HCD yielded valuable insights from clinicians and caregivers about the unique barriers to conducting GOCD among PLWD and their caregivers. These insights were used to adapt the Jumpstart Guide for use with PLWD and their caregivers, which is currently being tested in a pragmatic randomized controlled trial in outpatient clinics.