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: 10650777
• 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 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10650777
• 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 Professional; Home; Hospice Care; Hospitalization; Hospitals; Impaired cognition; Institution; Institutionalization; Intervention; Interview; Kidney Failure; Lead; Learning; Life; Malignant Neoplasms; Medical; Mentors; Mentorship; Modeling; Nature; Nerve Degeneration; Nurses; Outcome; Parkinson Disease; Participant; Patient Care; Patients; Persons; Process; Randomized, Controlled Trials; Readiness; Recommendation; Reporting; Research; Research Personnel; Self Efficacy; Sleep Disorders; Stress; Testing; Training; Translating; Tremor; United States; 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; improved; longitudinal analysis; motor symptom; non-motor symptom; novel; pilot test; poor health outcome; 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.

项目总结/文摘