The Personal Health Record for Persons with Dementia and Their Family Caregivers

痴呆症患者及其家庭照顾者的个人健康记录

基本信息

批准号：
8636153
负责人：
JOSEPH E. GAUGLER
金额：
$ 19万
依托单位：
UNIVERSITY OF MINNESOTA
依托单位国家：
美国
项目类别：
财政年份：
2014
资助国家：
美国
起止时间：
2014-04-15 至 2016-02-28
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8636153
关键词：
Alzheimer&apos s Disease Attention Caregivers Caring Choices and Control Chronic Chronic Disease Clinical Clinical Management Communication Data Dementia Detection Development Diagnosis Disease Distress Electronic Health Record Empirical Research Ensure Evaluation Family Family Caregiver Family member Foundations Goals Health Health Personnel Individual Information Services Institution Institutionalization Interview Length Long-Term Care Manuals Mental Health Methods Modeling Nature Outcome Patients Personal Health Records Persons Phase Primary Health Care Provider Reporting Research Infrastructure Sampling Sampling Studies Self Efficacy Stress Structure Symptoms Technology Testing Treatment Efficacy United States caregiving design digital disability efficacy testing evidence base experience health information technology improved interest meetings person centered pressure public health relevance satisfaction tool

项目摘要

Project Summary/Abstract The objective of the proposed project is to test the feasibility of a free online care coordination tool for family caregivers of persons with Alzheimer's disease or a related dementia (ADRD). [Specifically, this proposal uses a multi-phase mixed methods design (QUAN+QUAL¿QUAL) to: 1) test the Personal Health Record for Persons with Alzheimer's Disease and Related Dementias and Their Family Caregivers (PHR- ADRD)'s feasibility] on a sample of 50 ADRD caregivers; 2) conduct a longitudinal, descriptive analysis of change in self-efficacy, primary care provider interactions, and subjective stress over a 1-year period; and 3) purposively sample 20 caregivers from the sample who indicate the greatest positive empirical changes (n = 10) and negative changes (n = 10) in self-efficacy, primary care provider interactions, and subjective stress over 12 months to conduct semi-structured interviews that determine how and why PHR-ADRD use was helpful or not in enhancing these outcomes.] It is anticipated that the PHR-ADRD (which relies on the Microsoft Health Vault" platform) will provide a powerful care coordination tool that has heretofore not received attention as a clinical option for ADRD caregivers. [Such findings will facilitate the development of a treatment manual and provide a strong foundation for a multi-year initiative to evaluate the efficacy of the PHR- ADRD across multiple states and regions in the United States.]

项目概要/摘要拟议项目的目标是测试免费在线护理协调工具的可行性阿尔茨海默病或相关痴呆症 (ADRD) 患者的家庭护理人员。提案采用多阶段混合方法设计 (QUAN+QUAL¿QUAL) 来： 1) 测试个人健康阿尔茨海默病和相关痴呆症患者及其家庭照顾者记录 (PHR- ADRD）的可行性]以 50 名 ADRD 护理人员为样本，进行纵向、描述性分析；一年内自我效能、初级保健提供者互动和主观压力的变化；以及 3) 有目的地从样本中抽取 20 名表现出最大积极经验变化的护理人员 (n = 10) 以及自我效能、初级保健提供者互动和主观压力方面的负面变化 (n = 10) 超过 12 个月进行半结构化访谈，以确定 PHR-ADRD 使用的方式和原因 ] 预计 PHR-ADRD（依赖于 Microsoft Health Vault”平台）将提供迄今为止还没有的强大护理协调工具作为 ADRD 护理人员的临床选择而受到关注[此类发现将有助于开发一个新的方法。治疗手册，并为评估 PHR 疗效的多年计划提供坚实的基础 ADRD 横跨美国多个州和地区。]