Caregiving While Black-LIVE: Empowering Black Dementia Caregivers to Navigate Care

黑人现场护理：帮助黑人痴呆症护理人员进行护理

• 批准号: 10721926
• 负责人: Carolyn Kay Clevenger
• 金额: $ 43.35万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-05 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10721926
• 关键词: Address; Affect; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Anxiety; Black American; Black Populations; Black race; Caregivers; Caring; Communication; Communities; Competence; Complement; Coping Skills; Data; Dementia; Dementia caregivers; Development; Diagnosis; Discrimination; Disease; Disparity; Disparity population; Education; Equity; Ethnic Population; Exercise; Face; Family Caregiver; Family member; Feedback; Feeling; Foundations; Goals; Health; Health Professional; Healthcare; Healthcare Systems; Home; Hour; Instruction; Intervention; Interview; Knowledge; Learning; Legal; Link; Managed Care; Manuals; Mental Depression; Methods; Modeling; Ontology; Outcome; Personal Satisfaction; Persons; Pilot Projects; Prevalence; Provider; Race; Research; Research Personnel; Resources; Retirement; Risk; Role; Self Assessment; Self Care; Self Efficacy; Stress; Stress and Coping; Structural Racism; Structure; Taxes; Testing; Voice; Well in self; adverse outcome; care recipients; care systems; caregiver education; caregiving; cohort; coping; design; emotional distress; empowerment; experience; follow-up; health care service; health disparity; health literacy; improved; instrument; learning engagement; lens; member; pandemic disease; peer support; programs; psychoeducation; psychoeducational; racial disparity; racial minority population; skills; social; social cognitive theory; social culture; stressor; usability; user centered design

Project Summary/Abstract In the best of times, Black caregivers are under duress. Black Americans have more than twice the prevalence of Alzheimer’s disease and related dementias than Whites, thus increasing the number of Black family members providing care for persons living with dementia disorders like Alzheimer’s disease (PLWD). For Black dementia caregivers, the overlay of health disparities and systemic discrimination adds substantially to the taxing challenges of caregiving and contributes to heightened adverse outcomes for these caregivers and PLWD. Black Americans are disproportionately burdened by the cultural and practical reality of Black caregiving in America. This disadvantaged group faces unique, long-established stressors and vulnerabilities that inform their experiences and affect their well-being. Black caregivers have greater care responsibilities which contribute to greater risks for negative health effects than for white caregivers. For this proposal, we are seeking to develop a broadly accessible, synchronous/asynchronous course for Black family caregivers who provide care for PLWD, Caregiving while Black-LIVE ((Learning In Vital Engagement). This course seeks to equip and empower Black dementia caregivers with the knowledge, skills, and sense of mastery they need to address and cope effectively within their role broadly, not just in the context of the pandemic. We seek to promote caregiving self-efficacy in Black caregivers while acknowledging the social and cultural realities of this historically minoritized racial and ethnic group. We propose the following aims: Aim 1. Using an iterative, user-centered design approach, reconfigure the Caregiving while Black asynchronous program into a manualized and substantially more interactive online synchronous (facilitator-guided, face-to-face) and asynchronous (self-paced) interactive psychoeducation course, Caregiving while Black-LIVE. Aim 2. Assess the feasibility, usability, acceptability, and preliminary efficacy of the Caregiving while Black-LIVE course, employing a mixed-methods pre-post no control design to gather formative and evaluative data from four cohorts (n=10 each) of Black caregivers. We will employ established instruments to gather baseline and immediate post-course data on caregiving mastery, health literacy, and emotional well-being (i.e., stress, anxiety, and burden). Exploratory Aim. Determine sustained effects in engaging in Caregiving while Black-LIVE by collecting data 3 months after course completion. It is our long-term goal for this course to enhance caregiver mastery, promote solution-focused coping and produce positive outcomes in Black caregivers. This project moves beyond existing psychoeducational programs and interventions that merely provide dementia-related or crisis management education to family caregivers by keeping the issues of equity at the forefront of caregiver education. This project is the next step in establishing a scalable and effective culturally relevant psychoeducation course to mitigate the effects of structural racism by supporting the practices and traditions of caregiving in the Black community.

项目摘要/摘要 在最好的时候，黑人护理人员在值班。黑人美国人的患病率超过两倍 阿尔茨海默氏病和相关痴呆症比白人增加，从而增加了黑人家庭成员的数量 为患有痴呆症疾病的患者提供护理，例如阿尔茨海默氏病（PLWD）。黑色痴呆症 护理人员，健康差异和系统歧视的覆盖层大大增加了税收 护理的挑战并为这些护理人员和PLWD带来了不利后果。黑色的 美国人被美国黑人照料的文化和实践现实所烧毁。 这个处境不利的群体面临着独特的，长期以来的压力源和脆弱性 经历并影响他们的福祉。黑人护理人员承担更大的护理责任，这有助于 与白人护理人员相比，对健康影响负面影响的风险更大。对于此建议，我们正在寻求发展 针对为PLWD提供护理的黑人家庭护理人员的广泛访问，同步/异步课程， 在黑人生活时照顾（（在重要参与度中学习）。本课程旨在装备和赋予黑色 他们需要有效地解决和应对的知识，技能和精通感具有痴呆症护理人员 在他们的角色上，不仅在大流行的背景下。我们试图促进照顾自我效能 黑人护理人员在承认这个历史少数种族的社会和文化现实时， 民族。我们提出以下目的：目标1。使用迭代，以用户为中心的设计方法， 在黑色异步程序中重新配置护理，将其重新配置为手动和更多的 交互式在线同步（促进者引导，面对面）和异步（自定进度）互动 心理教育课程，在黑人生活时照顾。目标2。评估可行性，可用性，可接受性和 护理的初步效率在黑色课程的同时，采用混合方法前没有控制 设计以收集来自黑人护理人员的四个同类（n = 10个）的形成和评估数据。我们将雇用 已建立的工具，以收集有关护理精通，健康的基线和立即的课后数据 识字和情感福祉（即压力，动画和伯恩）。探索目标。确定持续 完成课程后3个月收集数据，从而从事护理时的影响。这是我们的 本课程的长期目标，以增强护理人员的掌握，促进以解决方案为中心的应对并产生 黑人护理人员的积极成果。该项目超越了现有的心理教育计划， 仅向家庭护理人员提供与痴呆有关或危机管理教育的干预措施 将公平问题保持在照料者教育的最前沿。该项目是建立的下一步 可扩展有效的文化相关心理教育课程，以减轻结构种族主义的影响 支持黑人社区的照顾实践和传统。