Enhancing Measurement and Characterization of Roles and Experiences of Sexual and Gender Minority Caregivers of Persons living with Alzheimer's Disease and Related Dementias

加强对阿尔茨海默病和相关痴呆症患者的性和性别少数照顾者的角色和经历的测量和表征

• 批准号: 10729719
• 负责人: Joel G. Anderson
• 金额: $ 72.99万
• 依托单位: UNIVERSITY OF NEVADA LAS VEGAS
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-01 至 2028-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10729719
• 关键词: Adult; Alzheimer' s disease caregiver; Alzheimer' s disease related dementia; Behavioral; Biological; Caregivers; Caring; Child; Communities; Data; Dementia caregivers; Development; Dimensions; Discrimination; Effectiveness; Emotional; Ensure; Family; Family member; Financial Hardship; Focus Groups; Friends; Future; Goals; Health; Heterosexuals; Improve Access; Individual; Intersex; Intervention; Interview; Knowledge; Lesbian Gay Bisexual Transgender Queer; Measurement; Measures; Medical; Mental Depression; Methods; Modeling; Moods; Nature; Outcome; Persons; Process; Psychological Factors; Quality of life; Registries; Research; Research Personnel; Role; Sampling; Services; Sexual and Gender Minorities; Spouses; Stress; Structure; Testing; Time; Victimization; asexual; care recipients; caregiver strain; caregiving; caregiving research; cisgender; cognitive interview; community-level factor; dementia care; dementia caregiving; design; digital media; disability; ethnic diversity; experience; field study; health disparity; health equity promotion; indexing; informal caregiver; intersectionality; member; offspring; poor health outcome; racial diversity; recruit; response; social; social stigma; support network; surrogate decision making; tertiary care; theories

SUMMARY Sexual and gender minorities (SGM), defined here as individuals who identify as lesbian, gay, bisexual, transgender, queer, intersex, asexual, and/or another identity, continue to be underrepresented in Alzheimer’s disease and related dementia (ADRD) caregiving research. Estimates suggest at least 1 in 5 SGM adults in the U.S. (nearly 1 million persons) are currently caregivers, with nearly half providing care to someone with ADRD. Our previous research has found that SGM caregivers experience health disparities, including high levels of caregiver stigma, depression, disability, victimization, discrimination, and stress (e.g., physical, emotional, and financial strain). Given the critical contributions of informal caregivers to ADRD care and the changing nature of caregiver dynamics, roles, and needs, it is crucial that measures relating to caregiving accurately reflect all caregivers. This study proposes to enhance understanding of experiences, roles and dynamics for SGM ADRD caregivers by identifying existing domains and developing new measures, testing and validating these measures, and ensuring measures are inclusive and accurately capture caregiving constructs and experiences of SGM ADRD caregivers. Guided by a community based participatory approach, we will leverage expertise of advisory boards with knowledge of SGM ADRD and caregiving research. This mixed method study has three specific aims. In Aim 1, we will identify and explore domains of ADRD caregiving for SGM ADRD caregivers through focus groups (n=8) and in-depth interviews (n=40). These findings will inform Aim 2 and the identification of key domains and subdomains. In Aim 2, we will develop and refine new measures of ADRD caregiving for SGM ADRD caregivers through the use of a modified online Delphi method that will garner input from advisory boards (community partners/researchers, n=40) with expertise in ADRD caregiving measures and the lived experiences of SGM and non-SGM ADRD caregivers. To ensure content validity of the new ADRD measures, they will be pretested and refined based on initial testing (n=40) and cognitive interviews (n=20) with SGM and non-SGM caregivers. In Aim 3, we will then test the new and existing measures of ADRD caregiving among a heterogeneous sample of SGM (n=250) and non-SGM ADRD caregivers (n=250). After evaluating the dimensionality structure of each item pool for a given domain and removing misfitting items, we will use item response theory (IRT) and an IRT-based model fit to further evaluate for item misfit. Finally, the resulting measures will be evaluated within an independent sample of SGM (n=125) and non-SGM (n=125) caregivers. This study’s iterative process will allow for the development of 6 to 8 new or modified caregiving measures that can help to improve access to supports and services of SGM ADRD caregivers, and ensure that future studies and intervention efforts can meet the needs of all ADRD caregivers and their care recipients.

概括 性别少数群体 (SGM)，此处定义为女同性恋、男同性恋、双性恋、 跨性别者、酷儿、双性人、无性恋和/或其他身份在阿尔茨海默氏症中的代表性仍然不足 据估计，至少有五分之一的 SGM 成年人参与了疾病和相关痴呆症 (ADRD) 护理。 美国（近 100 万人）目前是护理人员，其中近一半为 ADRD 患者提供护理。 我们之前的研究发现，SGM 护理人员存在健康差异，包括高水平 照顾者的耻辱、抑郁、残疾、受害、歧视和压力（例如身体、情感和压力） 考虑到非正规护理人员对 ADRD 护理的重要贡献以及不断变化的性质。 照顾者的动态、角色和需求，与照顾者相关的措施准确反映所有因素至关重要 本研究旨在加强对 SGM ADRD 的经验、角色和动态的理解。 护理人员通过识别现有领域并制定新措施、测试和验证这些措施 措施，并确保措施具有包容性并准确捕捉护理结构和经验 在基于社区的参与方法的指导下，我们将利用 SGM ADRD 护理人员的专业知识。 具有 SGM ADRD 和护理研究知识的顾问委员会 这项混合方法研究包含三项内容。 在目标1中，我们将确定并探索SGM ADRD护理人员的ADRD护理领域。 通过焦点小组 (n=8) 和深入访谈 (n=40) 这些发现将为目标 2 和目标提供信息。 在目标 2 中，我们将制定和完善 ADRD 的新措施。 通过使用修改后的在线 Delphi 方法来收集意见，为 SGM ADRD 护理人员提供护理 来自具有 ADRD 护理措施专业知识的顾问委员会（社区合作伙伴/研究人员，n=40） 以及 SGM 和非 SGM ADRD 护理人员的生活经历，以确保新内容的有效性。 ADRD 措施，将根据初始测试 (n=40) 和认知访谈进行预先测试和完善 (n=20) SGM 和非 SGM 照顾者 在目标 3 中，我们将测试新的和现有的 ADRD 措施。 SGM (n=250) 和非 SGM ADRD 护理人员 (n=250) 的异质样本中的护理。 评估给定域的每个项目池的维度结构并删除不合适的项目，我们 将使用项目反应理论 (IRT) 和基于 IRT 的模型拟合来进一步评估项目不匹配。 由此产生的措施将在 SGM (n=125) 和非 SGM (n=125) 的独立样本中进行评估 这项研究的迭代过程将允许开发 6 到 8 种新的或改进的护理方法。 有助于改善 SGM ADRD 护理人员获得支持和服务的机会，并确保 未来的研究和干预工作可以满足所有 ADRD 护理人员及其护理接受者的需求。