Preparing Patient-Caregiver Dyads with Parkinson's Disease for End-of-Life Decision Making

为患有帕金森病的患者和护理人员二人做好临终决策的准备

• 批准号: 10456804
• 负责人: Jiayun Xu
• 金额: $ 16.5万
• 依托单位: PURDUE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-26 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10456804
• 关键词: Advance Care Planning; Affect; Alzheimer' s Disease; Caregivers; Caring; Child; Chronic; Clinical; Clinical Trials; Cognition; Cognitive; Communication; Communication impairment; Communities; Competence; Complex; Data; Data Analyses; Decision Making; Development; Disease Progression; Doctor of Philosophy; Documentation; Educational workshop; Elderly; Family; Family Caregiver; Family member; Future; Goals; Health; Health Professional; Home; Hospice Care; Hospitals; Impaired cognition; Institution; Intervention; Interview; Kidney; Lead; Learning; Malignant Neoplasms; Medical; Mentors; Mentorship; Modeling; Motor; Nature; Nerve Degeneration; Nurses; Outcome; Parkinson Disease; Participant; Patients; Persons; Process; Randomized Controlled Trials; Readiness; Reporting; Research; Research Personnel; Research Training; Self Efficacy; Sleep Disorders; Stress; Testing; Training; Translating; Tremor; United States; Value of Life; Work; acceptability and feasibility; age group; cognitive interview; design; effectiveness study; end of life; end-of-life decision making; evidence base; experience; family support; feasibility testing; longitudinal analysis; non-motor symptom; novel; pilot test; preference; randomized trial; skills; statistics; therapy design; usability

Project Summary/Abstract The K23 application describes the background and experience of Dr. Jiayun Xu, PhD, RN, and her research and training plan to become an independent nurse researcher in the field of dyadic advance care planning interventions among persons with serious illness and their families (e.g. Parkinson’s disease). The overall goal of the K23 is to gain experience in designing and testing clinical trials, learn about different models for advance care planning (ACP) facilitation, and gain skills to conduct advanced dyadic and longitudinal analysis of data. A comprehensive training plan has been developed with an interdisciplinary mentorship team with the following training goals: (1) develop competency in the design and delivery of dyadic ACP communication interventions among persons with Parkinson’s disease and their caregivers; (2) acquire expertise in ACP communication models that can be applied to persons with Parkinson’s disease and their caregivers; and (3) develop skills in analyzing complex dyadic data using longitudinal and multilevel statistics. The training plan includes intensive one-on- one mentorship, coursework/workshops, formal training on clinical trials and advance care planning facilitation, and independent studies on advance care planning and longitudinal statistics with mentors. The purpose of the K23 project, is to develop, refine, and test the feasibility of a novel dyadic ACP intervention tailored to the unique needs of people with Parkinson’s disease and their caregivers. The specific aims are: (1) to identify the dyadic advance care planning needs for Parkinson’s disease, (2) develop and refine dyadic Parkinson’s disease-specific ACP materials, and (3) pilot test the dyadic Parkinson’s disease-specific ACP materials with an established intervention – PREPARE – for feasibility and acceptability. Results will lead to a R01 application for translating the intervention from pilot testing to a fully powered randomized control trial.

项目摘要/摘要 K23申请表描述了徐佳云博士的背景和经验，以及她的研究 和培训计划，成为二元高级护理规划领域的独立护士研究员 对患有严重疾病(如帕金森氏症)的人及其家人进行干预。总目标 K23的目的是在设计和测试临床试验方面积累经验，了解不同的模型以促进进步 护理规划(ACP)便利化，并获得对数据进行高级二元和纵向分析的技能。一个 与跨学科指导团队一起制定了全面的培训计划，其内容如下 培训目标：(1)培养设计和提供二元ACP通信干预措施的能力 帕金森氏症患者和他们的照顾者；(2)获得ACP沟通模式方面的专业知识 可应用于帕金森氏症患者和他们的照顾者；以及(3)发展分析技能 使用纵向和多水平统计的复杂并元数据。训练计划包括密集的一对一 一名导师、课程作业/讲习班、关于临床试验的正式培训和促进高级护理规划， 以及与导师一起进行的关于提前护理计划和纵向统计的独立研究。目的 K23项目是为了开发、改进和测试一种新的二元ACP干预的可行性，该干预是为 帕金森氏症患者及其照顾者的独特需求。具体目标是：(1)确定 帕金森病的二元提前护理计划需求，(2)发展和完善帕金森氏症 疾病特定的ACP材料，以及(3)用以下方法对二元帕金森病特定的ACP材料进行初步测试 既定的干预措施--为可行性和可接受性做准备。结果将导致R01申请 将干预从试点试验转变为完全有效的随机对照试验。