To reduce the burden of caregiving on health outcomes of midlife women: Asian American family caregivers of persons living with Alzheimer'sdisease

减轻中年妇女健康结果的护理负担：阿尔茨海默病患者的亚裔美国家庭护理人员

• 批准号: 10900145
• 负责人: Wonshik Chee
• 金额: $ 15.65万
• 依托单位: UNIVERSITY OF TEXAS AT AUSTIN
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10900145
• 关键词: reduce; burden; caregiving; health; outcomes

Currently, in the U.S., 5.8 million persons are living with Alzheimer’s Disease, subsequently involving about 15 million family caregivers. The wide negative influences of caregiving on health outcomes of family caregivers of persons living with Alzheimer’s Disease (PLAD) have been reported. Furthermore, racial/ethnic minority women including Asian American midlife women are more likely to suffer from caregiving burden compared with their counterparts, mainly due to their cultural attitudes related to Alzheimer’s Disease and caregiving (e.g., stigma, family obligations, women as caregivers). To reduce the burden of caregiving on the health outcomes of midlife women who are family caregivers of PLAD (MWPLAD), an increasing number of interventions to provide information and support/coaching have been developed and used. However, most of the interventions have rarely succeeded in achieving their goals, and dropout rates have been high. One major reason may be that the interventions have rarely been designed while considering caregivers’ cultural attitudes related to Alzheimer’s Disease and caregiving. For instance, due to cultural hesitance to discuss dementia, Asian Americans tend not to share their caregiving experience, including their heavy burden of caregiving and subsequent psychological and physical symptoms, until they get severe/serious problems/issues that cannot be tolerated anymore. Also, most interventions require MWPLAD to arrange care for the care recipient while the caregivers travel to and attend the interventions. With advances in computer and mobile technologies, a technology-based program can provide a highly innovative and effective way (without physical attendance) to provide information and coaching/support for MWPLAD while considering their cultural attitudes. Thus, based on the Bandura’s Theory, the research team developed the first technology-based information and coaching/support program that is tailored for Asian American midlife women who are family caregivers of PLAD (TACAD) while considering their cultural attitudes. TACAD uses a web app with Virtual Reality technology and has several innovative features in its design and delivery methods that overcome shortcomings in existing programs (including cultural tailoring and self-adaptation functionality using a machine learning method). The purpose of this 2-phase, mixed- methods, exploratory study is to preliminarily evaluate TACAD in improving health outcomes of Asian American midlife women who are family caregivers of persons living with Alzheimer’s disease (AACA) and their care recipients. Specific aims are to: (a) qualitatively evaluate TACAD through an expert review and a usability test; and (b) quantitatively evaluate the preliminary efficacy of TACAD in improving health outcomes of AACA and their care recipients. Phase 1 includes an expert review among 5 experts in in family caregivers of PLAD and a usability test among 10 AACA. Phase 2 adopts a randomized repeated measures pretest/posttest control group design among 60 AACA. Long-term goals are to implement the program in various settings and populations and enhance the methodology of culturally tailored technology-based interventions for minority caregivers.

目前，在美国，有 580 万人患有阿尔茨海默病，随后涉及约 15 名患者。 百万家庭护理人员的护理对家庭护理人员的健康结果产生广泛的负面影响。 此外，还有少数民族妇女患有阿尔茨海默病 (PLAD)。 与她们相比，包括亚裔美国中年女性在内的中年女性更有可能承受照顾负担 学分，主要是由于他们对阿尔茨海默病和护理的文化态度（例如，耻辱、 家庭义务、女性作为照顾者）减轻照顾负担对中年健康结果的影响。 作为PLAD (MWPLAD)家庭照顾者的妇女，越来越多的干预措施提供 然而，大多数干预措施已经制定和使用。 很少能成功实现目标，而辍学率居高不下的一个主要原因可能是： 在设计干预措施时很少考虑到护理人员与阿尔茨海默病相关的文化态度 例如，由于文化上对讨论痴呆症犹豫不决，亚裔美国人往往不会讨论。 分享他们的照顾经历，包括沉重的照顾负担以及随之而来的心理 和身体症状，直到他们出现无法再忍受的严重问题/问题。 大多数干预措施要求 MWPLAD 在护理人员前往和接受护理时为护理接受者安排护理 随着计算机和移动技术的进步，基于技术的计划可以参加干预。 提供高度创新和有效的方式（无需亲自出席）来提供信息和 对 MWPLAD 的指导/支持，同时考虑他们的文化态度 因此，根据班杜拉的理论， 研究团队开发了第一个基于技术的信息和辅导/支持计划 为作为 PLAD (TACAD) 家庭照顾者的亚裔美国中年女性量身定制，同时考虑她们的 TACAD 使用具有虚拟现实技术的网络应用程序，并在以下方面具有多项创新功能： 其设计和交付方法克服了现有计划的缺点（包括文化定制 和使用机器学习方法的自适应功能）这个两阶段混合的目的。 方法，探索性研究旨在初步评估 TACAD 在改善亚裔美国人健康状况方面的作用 作为阿尔茨海默氏病 (AACA) 患者家庭照顾者的中年妇女及其护理 具体目标是： (a) 通过专家评审和可用性测试对 TACAD 进行定性评估； (b) 定量评估 TACAD 在改善 AACA 健康结果方面的初步功效，以及 第一阶段包括由 PLAD 的 5 名家庭护理人员和一名护理人员组成的专家评审。 第 2 阶段 10 个 AACA 之间的可用性测试采用随机重复测量前测/后测对照组。 60 个 AACA 的长期目标是在不同环境和人群中实施该计划。 加强针对少数群体护理人员的文化定制、基于技术的干预措施的方法。