Enhanced Dementia Instruction and Tool in Home Hospice Care (EDITH-HC)

家庭临终关怀增强痴呆症指导和工具 (EDITH-HC)

• 批准号: 10471616
• 负责人: Elizabeth Luth
• 金额: $ 24.84万
• 依托单位: RUTGERS BIOMEDICAL/HEALTH SCIENCES-RBHS
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10471616
• 关键词: Address; African American; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Assessment tool; Award; Basic Science; Behavior Therapy; Behavioral Research; Cancer Patient; Caregiver Burden; Caregivers; Caring; Clinical; Collaborations; Communities; Conduct Clinical Trials; Dementia; Dementia caregivers; Development; Diagnosis; Disease; Distress; Elderly; Environment; Face; Family Caregiver; Feedback; Fostering; Foundations; Funding; Geriatrics; Goals; Grant; Health; Home; Hospice Care; Hospitalization; Individual; Instruction; Intervention; Interview; Knowledge; Learning; Literature; Location; Medicine; Mission; Modeling; New York; Nursing Homes; Nursing Services; Outcome; Palliative Medicine; Patient Care; Patient-Focused Outcomes; Patients; Persons; Phase; Population; Population Heterogeneity; Problem Solving; Process; Randomized Controlled Trials; Reporting; Research; Research Personnel; Research Support; Resources; Risk; Scientist; Site; Structure; Surveys; Techniques; Testing; Time; Training; Training Programs; Visiting Nurse; Work; Writing; acceptability and feasibility; base; care outcomes; caregiving; clinical care; community organizations; dementia care; dementia caregiving; design; disparity reduction; end of life; end of life care; evidence base; experience; flexibility; group intervention; health care disparity; health equity; hospice environment; improved; individual patient; information gathering; interest; learning strategy; novel; patient home care; pragmatic trial; primary outcome; racial disparity; racial diversity; recruit; research and development; skills; sociodemographics; symptom management; symptom treatment; symptomatic improvement; therapy development; tool; treatment as usual

PROJECT SUMMARY/ABSTRACT The long-term objective of this K99/R00 application is to develop Dr. Elizabeth Luth’s capacity to conduct studies aimed at reducing caregiver burden and improving care for patients with Alzheimer’s Disease and related dementias (ADRD) nearing the end of life. In the K99 phase, the proposed project supports Dr. Luth in four training objectives that will allow her to develop and transition to an independent investigator who creates culturally inclusive, practical, and scalable solutions to improve end-of-life care for patients with dementia. First, she will extend her knowledge in core substantive areas including hospice care, dementia caregiving, and recruitment and retention. Second, she will learn to develop, implement, and disseminate behavioral interventions with an emphasis on clinical care settings, workforce training, and collaboration with community partners. Third, she will learn how to design and conduct clinical trials for ADRD patients and caregivers. Finally, for the fourth training objective, Dr. Luth will pursue professional development opportunities, specifically in the areas of grant writing and collaboration. The four research aims of this application will proceed as follows. Aim 1 will identify common challenges, strategies, and gaps in care for an understudied population; that is, community-dwelling patients with dementia near the end of life. This aim is achieved through interviewing and surveying African American and white family caregivers and hospice clinicians. Aim 2 uses key stakeholder (family caregivers, clinicians, experts) feedback to adapt dementia-focused training materials and to develop a problem solving tool for home hospice clinicians to improve care outcomes. Aim 3 examines the feasibility and acceptability of the training and tool and revises them based on an iterative feedback process with family caregivers and clinicians. Aim 4 determines the preliminary efficacy of the training program and tool to improve clinicians’ knowledge of dementia-related challenges in home hospice care, reduce family caregiver burden, and reduce hospice disenrollment through a pilot randomized controlled trial (RCT). The proposed research works towards reducing disparities and achieving health equity by involving African American individuals in all stages of information gathering and intervention development and testing. The proposed project is consistent with the NIA’s mission to conduct behavioral research on aging and foster the development of research scientists in aging. It is also aligned with the NIA’s strategic goals of developing interventions to address Alzheimer’s Disease and improve the health of older adults in diverse populations. Dr. Luth proposes to pursue these development goals and begin the proposed research with the support of the Department of Medicine and Division of Geriatrics and Palliative Medicine at Weill Cornell Medicine, which provide an ideal environment of research support and resources to help her achieve her training and research goals.

项目总结/摘要 这项K99/R 00申请的长期目标是发展伊丽莎白·卢斯博士的能力， 旨在减轻照顾者负担和改善阿尔茨海默病患者护理的研究， 与之相关的痴呆（ADRD）接近生命的尽头。在K99阶段，拟议的项目支持Luth博士 四个培训目标，使她能够发展和过渡到一个独立的调查员， 文化包容，实用，可扩展的解决方案，以改善老年痴呆症患者的临终关怀。第一、 她将扩展她在核心实质性领域的知识，包括临终关怀，痴呆症康复， 招聘和保留。第二，她将学习发展、实施和传播行为 干预措施，重点是临床护理环境、劳动力培训以及与社区的合作 伙伴第三，她将学习如何为ADRD患者和护理人员设计和进行临床试验。 最后，对于第四个培训目标，Luth博士将寻求专业发展机会，具体而言， 在撰写资助和合作方面。本申请的四个研究目标将如下进行： 如下目标1将确定共同的挑战，战略，和照顾不足的人口差距; 也就是说，社区居住的痴呆症患者接近生命的尽头。这一目标是通过 采访和调查非裔美国人和白色家庭护理人员和临终关怀临床医生。Aim 2用途 关键利益攸关方（家庭护理人员、临床医生、专家）的反馈，以调整以痴呆症为重点的培训材料 并为家庭临终关怀临床医生开发解决问题的工具，以改善护理结果。目标3检查 培训和工具的可行性和可接受性，并根据迭代反馈对其进行修订 与家庭护理人员和临床医生进行沟通。目标4确定培训计划的初步功效 和工具，以提高临床医生对痴呆症相关的挑战，在家庭临终关怀，减少家庭 护理人员负担，并通过试点随机对照试验（RCT）减少临终关怀的退出。的 拟议的研究旨在通过让非洲人参与， 美国个人在信息收集和干预开发和测试的各个阶段。的 拟议的项目是符合NIA的使命进行行为研究老化和培养 发展老龄化研究科学家。它也符合NIA的战略目标， 干预措施，以解决阿尔茨海默病和改善健康的老年人在不同的人群。博士 Luth建议追求这些发展目标，并在美国国家科学院的支持下开始拟议的研究。 威尔康奈尔医学院医学系和老年病与姑息医学部， 提供理想的研究支持和资源环境，帮助她实现培训和研究 目标.