A culturally adapted decision aid intervention to support Chinese American dementia caregivers in feeding-related decisions

项目总结 痴呆症患者的家庭照顾者必须在以下情况下决定是管喂养还是手喂养 持续的饮食问题就会出现。对于华裔美国痴呆症照顾者来说，这一决定可能很困难，因为 由于文化的相互作用，可能缺乏患者的事先指示，对痴呆症的理解不佳， 对管饲的风险和好处缺乏了解。试管喂养的盛行率很高 在中国患有晚期痴呆症的老年人中；然而，管喂对健康没有好处 患有严重痴呆症的老年人，实际上可能与风险增加和不适有关。共享 决策是患者、家庭成员和医疗保健提供者共同努力的过程 制定护理计划，平衡临床证据、患者偏好和价值与风险和预期 结果。目前关于喂养管的临床讨论很少达到这一标准。有限的研究一直是 为提高华裔美国痴呆症照顾者关于喂养选择的决策质量进行了调查。 这个独立之路奖(K99/R00)将为贝博士提供必要的培训、指导和技能 开展干预研究，以改善对中国痴呆患者喂养选择的决策。 华裔美国社区。这项研究的目标是开发和试行一种适应文化的决策 援助干预，以支持华裔美国痴呆症照顾者对喂养选择的决策。至 成为改善临终决策的独立调查员，贝医生将接受培训和 在四个领域提供指导：(1)加深对临终决策的了解，(2)获得更多 培训定性方法研究；(3)提高临床试验设计的熟练程度；(4)提高 在拨款撰写、研究团队管理和领导力方面的专业发展技能。在K99阶段， 这位候选人提出了两个目标。目标1：与家庭照顾者和医疗保健人员进行个别访谈 专业人员告知现有干预措施的适应情况；目标2：开发、改进和可接受性测试 适应文化的决策辅助工具。在R00阶段，候选人的目标是改进和评估 这一决定有助于对60名华裔美国痴呆症照顾者进行试点随机对照试验(目标3)。 到R00奖项结束时，贝博士将完成从观察性和解释性研究到 行为干预工作，并提交R01提案。她强大的指导团队，历史悠久 与纽约市的社区组织合作，以及理想的研究支持和 纽约大学的资源将帮助贝博士成为一名成功的独立调查员 老年痴呆症患者的临终决策。

PROJECT SUMMARY Family caregivers of people with dementia have to decide between tube feeding and hand feeding when persistent eating problems arise. This decision can be difficult for Chinese-American dementia caregivers, due to the interplay of culture, potential absence of a patient’s advance directive, poor understanding of dementia, and lack of knowledge on the risks and benefits of tube feeding. There is a high prevalence of tube feeding among Chinese older adults with advanced dementia; however, tube feeding does not have health benefits for older adults with advanced dementia, and may in fact be related to increased risk and discomfort. Shared decision-making is a process by which patients, family members, and healthcare providers work together to create care plans that balance clinical evidence and patient preferences and values with risks and expected outcomes. Current clinical discussions on feeding tubes rarely meet this standard. Limited research has been conducted to improve decision quality regarding feeding options among Chinese-American dementia caregivers. This pathway to Independence Award (K99/R00) will give Dr. Pei the training, mentoring, and skills necessary to conduct intervention research to improve decision-making about feeding options for dementia patients in Chinese American communities. The goal of this study is to develop and pilot test a culturally adapted decision aid intervention to support Chinese American dementia caregivers in decision making about feeding options. To become an independent investigator in improving end-of-life decision making, Dr. Pei will receive training and mentoring in four areas: (1) deepening the knowledge of end-of-life decision-making, (2) gaining additional training in qualitative methods research, (3) developing proficiency in clinical trial design and (4) enhancing professional developmental skills in grant writing, research team management, and leadership. In the K99 phase, the candidate proposes two aims. Aim 1: Conduct individual interviews with family caregivers and healthcare professionals to inform the adaptation of an existing intervention; Aim 2: Develop, refine, and acceptability test the culturally adapted decision aid. In the R00 phase, the candidate aims to refine and evaluate the efficacy of the decision aid in a pilot randomized controlled trial among 60 Chinese American dementia caregivers (Aim 3). By the end of the R00 award, Dr. Pei will complete the transition from observational and explanatory research to behavioral intervention work and submit an R01 proposal. Her strong mentoring team, well-established collaboration with community organizations in New York City, and ideal environment of research support and resources at New York University will help Dr. Pei become a successful independent investigator in improving end-of-life decision making for older adults with dementia.