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

总结 性和性别少数群体（SGM），在这里被定义为个人谁确定为女同性恋，男同性恋，双性恋， 变性人、同性恋者、双性者、无性恋者和/或其他身份的人在阿尔茨海默氏症中的代表性仍然不足 疾病和相关痴呆症（ADRD）的研究。据估计，至少有五分之一的SGM成年人在 美国目前有近100万人是护理人员，其中近一半为ADRD患者提供护理。 我们以前的研究发现，SGM照顾者经历健康差异，包括高水平的 照顾者耻辱，抑郁，残疾，受害，歧视和压力（例如，身体上，情感上， 财政紧张）。考虑到非正式照顾者对ADRD护理的重要贡献以及 照顾者的动态，角色和需求，至关重要的是，与照顾有关的措施准确地反映了所有 照顾者本研究旨在加深对SGM ADRD经验、角色和动态的理解 护理人员通过识别现有领域和开发新的措施，测试和验证这些 措施，并确保措施是包容性的，并准确地捕捉重复的结构和经验 SGM ADRD护理人员。在以社区为基础的参与式方法的指导下，我们将利用 拥有SGM ADRD知识的咨询委员会和研究机构。这项混合方法研究有三个 明确的目标。在目标1中，我们将确定和探索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）。这些研究结果将为目标2和 关键域和子域的识别。在目的2中，我们会发展和改善可持续发展的新措施， 通过使用改良的在线德尔菲方法（将收集输入）为SGM ADRD护理人员提供咨询 来自具有ADRD预防措施专业知识的咨询委员会（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。为确保新内容的有效性， ADRD指标，将根据初始测试（n=40）和认知访谈进行预测试和完善 （n=20）与SGM和非SGM照顾者。在目标3中，我们将测试ADRD的新措施和现有措施 在SGM（n=250）和非SGM ADRD护理人员（n=250）的异质样本中进行验证。后 评估给定领域的每个项目池的维度结构并移除不匹配的项目， 将使用项目反应理论（IRT）和基于IRT的模型拟合进一步评估项目不匹配。最后 将在SGM（n=125）和非SGM（n=125）的独立样本中评价所得测量值 照顾者这项研究的迭代过程将允许开发6至8个新的或修改的 有助于改善SGM ADRD护理人员获得支持和服务的措施，并确保 未来的研究和干预努力可以满足所有ADRD护理人员及其护理接受者的需求。

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.