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

项目总结 Chanee Fabius博士是哈佛大学卫生政策和管理系助理教授 约翰霍普金斯大学布隆伯格公共卫生学院。她的职业目标是成为一名独立人士。 研究人员进行针对测试的高影响嵌入式实用临床试验(EPCT) 实际环境中的干预措施、政策和方案，以更好地支持家庭护理劳动力和 改善接受服务的人的护理质量和生活质量，包括与 阿尔茨海默病和相关痴呆症(ADRD)及其家庭照顾者。这个奖项将为她提供 拥有受保护的时间和学习经验，以获得知识、技能和能力来发展 EPCT并将调查结果转化为常规的家庭护理服务。法比尤斯博士的职业发展奖 建议在家庭护理研究中进行为期五年的混合方法、人为因素方法培训，以及 具有开发和实施ePCTS的应用经验。法比尤斯博士组建了一支优秀的导师团队 以及在她提出的培训目标领域拥有专业知识的顾问小组。 由于疾病进展、高度护理需求和有限的财政资源，与 ADRD经常接受医疗补助家庭和社区服务，由家庭护理助手提供证明 在日常活动中提供帮助。家庭照顾者和家庭护理助手相互作用，为 老年人，但他们的关系往往令人担忧，因为信息差距，角色期望不匹配， 以及对彼此在家庭护理中的角色缺乏共同理解。拟议的K01将：(1)杠杆作用 具有全国代表性的数据，以确定家庭照顾者和家庭护理助手之间的角色分担 在有和没有ADRD的Medicare-Medicaid登记的家庭护理接受者中是不同的，并且与 老年人的参与限制；(2)进行定性研究，以发展和细化家庭护理角色 和偏好指南，以改善信息共享并阐明家庭照顾者之间的角色期望 和照顾患有ADRD的老年Medicaid HCBS患者的家庭护理助手；(3)评估可行性和 老年人家庭照顾者居家照护角色和偏好指南的可接受性 ADRD和家庭护理助手。这项干预将在10个老年三合会中最多五个机构进行试点 与ADRD一起生活的成年人、家庭照顾者和家庭护理助手。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 与ADRD、家庭照顾者和家庭护理助手一起。调查结果将支持制定和提交 R01拨款提案，在Medicaid HCBS中实施和测试ePCT，以评估该角色和 老年人、家庭照顾者和家庭照顾者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.