Improving Information Sharing Between Family Caregivers and Home Care Aides Caring for Persons Living with ADRD

项目摘要 Chanee Fabius博士是卫生政策和管理系的助理教授， 约翰霍普金斯布隆伯格公共卫生学院。她的职业目标是成为一名独立的 开展高影响力嵌入式实用临床试验（ePCT）的研究者， 在真实的世界环境中采取干预措施、政策和方案，以更好地支持家庭护理工作人员， 提高接受服务者，包括患有艾滋病毒/艾滋病的人的护理质量和生活质量 阿尔茨海默病和相关痴呆症（ADRD）及其家庭护理人员。这个奖项将为她提供 用受保护的时间和学习经验来获得知识、技能和能力， ePCT并将结果转化为常规家庭护理服务。法比尤斯博士职业发展奖 提出了五年的培训混合方法，人为因素的方法在家庭护理研究， 开发和开展ePCT的应用经验。法比尤斯博士组建了一个优秀的导师团队 和咨询小组，在她提出的培训目标领域具有专门知识。 由于疾病进展、高护理需求和有限的财政资源， ADRD经常接受医疗补助家庭和社区服务，由家庭护理助理提供， 协助日常活动。家庭护理人员和家庭护理助理相互作用， 老年人，但他们的关系往往是充满了由于信息的差距，不一致的角色期望， 以及对彼此在家庭护理中的角色缺乏共同理解。拟议的K 01将：（1）利用 具有全国代表性的数据，以确定家庭照顾者和家庭护理助理之间的角色分担 在有和没有ADRD的Medicare-Medicaid登记的家庭护理接受者之间存在差异，并且与 老年人的参与限制;（2）进行定性研究，以发展和完善家庭护理的作用 和偏好指南，以改善信息共享，并澄清家庭照顾者之间的角色期望 和家庭护理助理照顾老年医疗补助HCBS接受者与ADRD生活;（3）评估可行性， 向与老年人生活在一起的老年人的家庭照顾者提供家庭照顾角色和偏好指南的可接受性 ADRD和家庭护理助手。这项干预措施将在10个三合会内的5个机构进行试点， 患有ADRD的成年人、家庭护理人员和家庭护理助理。拟议的工作与最近的 政策和研究建议，呼吁采取干预措施，支持老年人的生活质量， ADRD，家庭护理人员和家庭护理助手。调查结果将支持制定和提交 R 01拨款提案，用于在Medicaid HCBS中实施和测试ePCT，以评估角色的影响， 老年人、家庭照顾者和家庭护理助手的偏好指南和生活质量结果。

PROJECT SUMMARY Dr. Chanee Fabius is an Assistant Professor in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health. Her career goal is to become an independent investigator conducting high-impact embedded pragmatic clinical trials (ePCTs) directed at testing interventions, policies and programs in real world settings to better support the home care workforce and improve care quality and quality of life among those receiving services, including persons living with Alzheimer’s Disease and related dementias (ADRD) and their family caregivers. This award will provide her with the protected time and learning experiences to obtain the knowledge, skills, and capability to develop ePCTs and translate findings into routine home care delivery. Dr. Fabius’s career development award proposes five years of training in mixed methods, human factors approaches in home care research, and applied experiences developing and conducting ePCTs. Dr. Fabius has assembled a stellar mentorship team and advisory panel with expertise in the areas of her proposed training goals. As a result of disease progression, high care needs, and limited financial resources, persons living with ADRD often receive Medicaid Home and Community-Based Services, delivered by home care aides proving hands on assistance with daily activities. Family caregivers and home care aides interact to provide care for older adults, but their relationship is often fraught due to gaps in information, misalignment of role expectations, and lack of shared understanding of each other’s roles in home care. The proposed K01 will: (1) leverage nationally representative data to determine how role sharing between family caregivers and home care aides differs among Medicare-Medicaid enrolled home care recipients with and without ADRD, and is associated with older adults’ participation restrictions; (2) conduct a qualitative study to develop and refine a home care role and preference guide to improve information sharing and clarify role expectations between family caregivers and home care aides caring for older Medicaid HCBS recipients living with ADRD; (3) assess the feasibility and acceptability of delivering a home care role and preference guide to family caregivers of older adults living with ADRD and home care aides. The intervention will be piloted in up to five agencies within 10 triads of older adults living with ADRD, family caregivers, and home care aides. The proposed work is aligned with recent policy and research recommendations calling for interventions that support quality of life for older adults living with ADRD, family caregivers, and home care aides. Findings will support the development and submission of an R01 grant proposal to implement and test an ePCT in Medicaid HCBS to assess the effects of the role and preference guide and quality of life outcomes for older adults, family caregivers, and home care aides.