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，5.8 100万人患有阿尔茨海默病，随后涉及约15 百万家庭照顾者分娩对家庭照顾者健康结果的广泛负面影响 患有阿尔茨海默病（PLAD）的人已经被报道。此外，少数种族/族裔妇女 包括亚裔美国中年妇女在内的女性更有可能承受生育负担， 这主要是由于他们对阿尔茨海默病和痴呆症的文化态度（例如，耻辱， 家庭义务，妇女作为照顾者）。减轻中年人的健康负担 作为PLAD家庭照顾者的妇女（MWPLAD），越来越多的干预措施， 信息和支持/辅导已经开发和使用。然而，大多数干预措施 他们很少能够成功地实现目标，辍学率很高。一个主要原因可能是， 在设计干预措施时，很少考虑照顾者对阿尔茨海默氏症的文化态度 疾病与死亡例如，由于文化上对讨论痴呆症的犹豫，亚裔美国人往往不 分享他们的创业经历，包括他们沉重的创业负担和随后的心理压力， 和身体症状，直到他们得到严重/严重的问题/问题，不能容忍了。还有， 大多数干预措施要求MWPLAD在护理人员前往 参加干预。随着计算机和移动的技术的进步，基于技术的程序可以 提供高度创新和有效的方式（无需亲自出席）提供信息， 对妇女、规划和发展部进行辅导/支持，同时考虑到他们的文化态度。因此，根据班杜拉的理论， 研究小组开发了第一个基于技术的信息和指导/支持计划， 专为亚裔美国中年妇女谁是家庭照顾者的PLAD（TACAD），同时考虑他们的 文化态度。TACAD使用具有虚拟现实技术的Web应用程序，并具有多项创新功能， 它的设计和交付方法，克服了现有方案的缺点（包括文化剪裁 以及使用机器学习方法的自适应功能）。这两个阶段的目的，混合- 方法：探索性研究，初步评价TACAD对改善亚裔美国人健康结局的作用 中年妇女谁是家庭照顾者的人生活与阿尔茨海默氏病（AACA）和他们的照顾 受惠人士具体目标是：（a）通过专家审查和可用性测试对TACAD进行定性评价; 和（B）定量评价TACAD在改善AACA的健康结果方面的初步功效， 他们的照顾对象。第1阶段包括PLAD家庭护理人员中的5名专家进行的专家评审， 在10个AACA中进行可用性测试。阶段2采用随机重复测量的前测/后测对照组 设计在60 AACA之间。长期目标是在各种环境和人群中实施该方案 加强针对少数群体照料者的文化定制技术干预方法。