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

项目总结/摘要 K23应用程序描述了博士Jiayun Xu，PhD，RN的背景和经验，以及她的研究 和培训计划，成为一个独立的护士研究人员在该领域的二元先进的护理规划 在患有严重疾病的人及其家庭中采取干预措施（如帕金森病）。总目标 K23的目的是获得设计和测试临床试验的经验，了解不同的模型， 护理计划（ACP）的促进，并获得技能进行先进的二元和纵向分析的数据。一 与一个跨学科指导小组一起制定了全面的培训计划，其中包括 培训目标：（1）培养设计和实施二元ACP沟通干预措施的能力 帕金森病患者及其护理人员;（2）获得ACP沟通模式的专业知识 可以应用于帕金森病患者及其护理人员;（3）培养分析技能 复杂的二元数据使用纵向和多级统计。培训计划包括密集的一对一培训， 一次指导、课程/讲习班、关于临床试验的正式培训和提前护理规划促进， 以及与导师一起进行的关于预先护理规划和纵向统计的独立研究。的目的 K23项目，是开发，完善和测试一种新的二元ACP干预的可行性， 帕金森病患者及其护理人员的独特需求。具体目标是：（1）识别 帕金森病的二元提前护理计划需求，（2）开发和完善帕金森病的二元 疾病特异性ACP材料，和（3）用以下材料对二元帕金森病特异性ACP材料进行初步测试： 一个既定的干预措施-可行性和可接受性。结果将导致R 01应用 将干预措施从试点测试转化为完全有效的随机对照试验。

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.