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

项目摘要 痴呆症患者的家庭照顾者必须在管饲和手饲之间做出决定， 出现了持续的进食问题。对于华裔美国痴呆症护理人员来说，这一决定可能很困难， 文化的相互作用，潜在的缺乏病人的预先指示，对痴呆症的理解不足， 以及对管饲的风险和益处缺乏了解。管饲的流行率很高 在患有晚期痴呆症的中国老年人中，管饲对健康没有好处， 患有晚期痴呆症的老年人，事实上可能与增加的风险和不适有关。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，平衡临床证据和患者偏好以及风险和预期价值 结果。目前关于饲管的临床讨论很少符合这一标准。有限的研究已经 进行，以提高决策质量有关喂养的选择之间的华裔美国痴呆症照顾者。 这条通往独立奖（K99/R 00）的道路将为裴博士提供必要的培训，指导和技能 进行干预研究，以改善老年痴呆症患者的喂养选择决策， 美国华人社区。本研究的目的是开发和试点测试一种文化适应的决定 援助干预，以支持华裔美国痴呆症护理人员在有关喂养选择的决策。到 成为改善临终决策的独立研究者，裴博士将接受培训， 在四个方面进行指导：（1）加深对生命终结决策的了解，（2）获得更多的 定性方法研究的培训，（3）提高临床试验设计的熟练程度，（4）提高 专业的发展能力，在赠款写作，研究团队管理和领导。在K99阶段， 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性;目标2：开发、完善和可接受性测试 文化适应的决策辅助。在R 00阶段，候选人的目标是完善和评估的有效性 在60名华裔美国痴呆症照顾者中进行的一项初步随机对照试验中的决策辅助（目的3）。 在R 00奖结束时，裴博士将完成从观察和解释性研究到 行为干预工作并提交R 01提案。她强大的指导团队， 与纽约市社区组织的合作，以及研究支持和 纽约大学的资源将帮助裴博士成为一名成功的独立研究者， 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.