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

适应文化的决策援助干预措施，支持华裔美国痴呆症护理人员做出与喂养相关的决策

• 批准号: 10591170
• 负责人: Yaolin Pei
• 金额: $ 10.38万
• 依托单位: NEW YORK UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-03-01 至 2025-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10591170
• 关键词: Address; Advance Directives; Aging; Alzheimer' s disease related dementia; American; Area; Asia; Award; Behavior Therapy; Behavioral Research; Benefits and Risks; Caregivers; Caring; Characteristics; Chinese; Chinese American; Chinese population; Cities; Clinical; Clinical Trials Design; Collaborations; Communities; Conflict (Psychology); Cultural Sensitivity; Data; Decision Aid; Decision Making; Dementia; Dementia caregivers; Development; Disadvantaged; Eating; Education; Educational Materials; Elderly; Ensure; Enteral Feeding; Environment; Equilibrium; Ethnic Origin; Family; Family Caregiver; Family member; Food; Fostering; Geriatrics; Goals; Grant; Hand; Health Benefit; Health Personnel; Health Professional; Heart; High Prevalence; Hybrids; Individual; Intervention; Intervention Studies; Interview; Knowledge; Language; Leadership; Linguistics; Literature; Mentors; Methodology; Mission; New York; New York City; Nurses; Nutritional status; Outcome; Participant; Pathway interactions; Patient Preferences; Patients; Persons; Phase; Physicians; Population; Process; Professional Organizations; Qualitative Methods; Randomized, Controlled Trials; Reading; Recommendation; Research; Research Methodology; Research Personnel; Research Support; Resources; Risk; Scientist; Signal Transduction; Social Workers; Societies; Speech Therapist; Testing; Training; United States National Institutes of Health; Universities; Work; Writing; acceptability and feasibility; advanced dementia; cognitive interview; community organizations; comparison group; cultural values; efficacy evaluation; efficacy testing; end of life; end of life care; end-of-life decision making; evidence base; family structure; feeding; heuristics; improved; nutrition; pilot test; preference; prototype; research and development; research study; shared decision making; skills; success; support tools; surrogate decision making; therapy development; tool

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.

项目概要 痴呆症患者的家庭护理人员必须在管饲和手工喂养之间做出选择 由于持续的饮食问题，对于华裔美国痴呆症护理人员来说，这个决定可能很困难。 文化的相互作用，可能缺乏患者的预先指示，对痴呆症的了解不足， 缺乏对管饲的风险和益处的了解 管饲的流行率很高。 然而，对于患有晚期痴呆症的中国老年人来说，管饲对健康没有好处； 患有晚期痴呆症的老年人，实际上可能与共同的风险和不适增加有关。 决策是患者、家庭成员和医疗保健提供者共同努力的过程 创建护理计划，平衡临床证据、患者偏好和价值观与风险和预期 目前关于饲管的临床讨论很少符合这一标准。 旨在提高美籍华裔痴呆症护理人员有关喂养选择的决策质量。 这条通往独立奖 (K99/R00) 的途径将为裴博士提供培训、指导和必要的技能 开展干预研究，以改善痴呆症患者喂养选择的决策 这项研究的目标是制定和试点测试适应文化的决策。 援助干预措施，支持华裔痴呆症护理人员做出有关喂养选择的决策。 成为改善临终决策的独立调查员，裴博士将接受培训并 四个领域的指导：(1) 加深临终决策的知识，(2) 获得额外的指导 定性方法研究培训，(3) 提高临床试验设计的熟练程度，(4) 提高 在 K99 阶段，资助撰写、研究团队管理和领导方面的专业发展技能。 候选人提出了两个目标 1：与家庭护理人员和医疗保健人员进行个人访谈。 专业人士为现有干预措施的调整提供信息；目标 2：开发、完善和可接受性测试； 适应文化的决策辅助 在 R00 阶段，候选人的目标是完善和评估决策的有效性。 在一项针对 60 名华裔美国痴呆症护理人员的随机对照试验中提供决策辅助（目标 3）。 在R00奖结束时，裴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、完善的指导团队。 与纽约市社区组织的合作，以及理想的研究支持和环境 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，以改善 患有痴呆症的老年人的临终决策。