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.

项目总结/摘要 在最好的时候，黑人护理人员受到胁迫。美国黑人的患病率是 老年痴呆症和相关痴呆症的发病率比白人高，从而增加了黑人家庭成员的数量。 为患有痴呆症的人提供护理，如阿尔茨海默病（PLWD）。黑人痴呆症 照顾者，健康差距和系统性歧视的叠加大大增加了税收 这是一个巨大的挑战，并加剧了这些照顾者和艾滋病患者的不良后果。黑色 美国人不成比例地承受着黑人在美国定居的文化和现实的负担。 这一弱势群体面临着独特的、长期存在的压力源和脆弱性， 体验并影响他们的幸福。黑人照顾者有更大的照顾责任，这有助于 比白色照顾者有更大的负面健康影响的风险。对于这一建议，我们正在寻求发展 一个广泛使用的，同步/异步的课程，为黑人家庭照顾者谁提供照顾PLWD， 在黑人生活中照顾（在重要参与中学习）。本课程旨在装备和赋予黑人 痴呆症护理人员具有有效解决和科普所需的知识、技能和掌握感 在其广泛的作用范围内，而不仅仅是在大流行病的背景下。我们致力于提高自我效能感， 黑人照顾者虽然承认这个历史上少数民族的社会和文化现实， 族群。我们提出以下目标：目标1。使用迭代的、以用户为中心的设计方法， 重新配置照顾，而黑色异步程序到一个手动和实质上更多 在线互动同步（辅导员指导，面对面）和异步（自定进度）互动 心理教育课程，照顾黑人生活。目标2.评估可行性、可用性、可接受性， 采用混合方法前后无对照的黑人生活护理课程的初步疗效 设计从四个队列（每组n=10）的黑人照顾者收集形成性和评价性数据。我们会委聘 建立工具，收集基线和即时的课程后数据， 识字和情感健康（即，压力、焦虑和负担）。探索目标。确定持续 通过收集课程完成后3个月的数据，研究了在Black-LIVE期间从事护理的效果。是我们 本课程的长期目标是提高护理人员的掌握能力，促进以解决方案为重点的应对和生产 黑人护理人员的积极结果。这个项目超越了现有的心理教育计划， 干预措施，仅提供痴呆症相关或危机管理教育的家庭照顾者， 将公平问题放在照顾者教育的首位。这个项目是建立一个 可扩展和有效的文化相关心理教育课程，以减轻结构性种族主义的影响， 支持黑人社区的习俗和传统。