Understanding the needs and experiences of surrogate decision makers caring for SGM individuals with Alzheimer's Disease and Related Dementias.

了解照顾患有阿尔茨海默病和相关痴呆症的 SGM 个体的代理决策者的需求和经验。

• 批准号: 9931904
• 负责人: Alexia Mary Torke
• 金额: $ 9.95万
• 依托单位: INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-15 至 2021-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9931904
• 关键词: Address; Adult; Advance Care Planning; Age; Alexia; Alzheimer' s disease related dementia; Alzheimer' s disease risk; Asses; Biological; Caring; Child; Couples; Data Analyses; Data Collection; Data Set; Decision Making; Dimensions; Discrimination; Documentation; Elderly; Emotional; Ethics; Family; Family member; Friends; Health Personnel; Health Priorities; Healthy People 2020; Heterosexuals; Incidence; Individual; Institute of Medicine (U.S.); Intervention; Interview; Laws; Legal; Lesbian Gay Bisexual Transgender; Life; Medical; Mentors; Methods; Participant; Patients; Persons; Population; Populations at Risk; Poverty; Prejudice; Process; Qualitative Methods; Recommendation; Recording of previous events; Religion and Spirituality; Research; Research Personnel; Rights; Risk; Sampling; Security; Societies; Surveys; Testing; Time; United States; United States Dept. of Health and Human Services; Unmarried person; Vulnerable Populations; aging population; base; cognitive interview; end of life care; experience; gender minority; health disparity; improved; loved ones; minority communities; named group; neglect; next generation; same-sex marriage; same-sex partnership; secondary analysis; sexual minority; surrogate decision maker; therapy design; therapy development; treatment planning

ABSTRACT Facing Alzheimer’s Disease and Related Dementia (ADRD) in a loved one is challenging under any circumstances, but may be even more challenging when the patient or their decision maker is a sexual or gender minority (SGM). While SGM individuals have become a more visible part of society, there is accumulating evidence of health disparities among SGM older adults. Although Dr. Alexia Torke’s K24 proposal has provided support for secondary analysis of data addressing the emotional, spiritual and religious aspects of surrogate decision making, this dataset is not large enough to include the number of SGM participants needed to conduct rigorous research on the experience of this vulnerable population. Given the risk of ADRD in the aging population, further primary data collection is needed to understand the perspectives of surrogates caring for SGM patients with ADRD, in order to develop interventions that improve the quality of decisions and the surrogate’s experience. Specific aims of this supplement proposal are to understand the needs and experiences of surrogate decision makers caring for SGM individuals with Alzheimer’s Disease and Related Dementias and to develop and pilot test a survey assessing SGM individuals’ understanding of and engagement in the surrogate decision making process. We will first qualitatively interview 25-30 surrogate decision makers who have recently cared for SGM individuals or currently caring for SGM individuals with Alzheimer’s Disease and Related Dementias. We will purposefully sample a mix of individuals where the surrogate is a SGM or not but caring for a SGM individual. We will then develop a survey based on findings in Aim 1 regarding the needs and challenges of surrogate decision making. Refine the survey using cognitive interviewing with a small sample of 25 SGM older adults. Results of this study will be used to 1) validate the survey to asses understanding of and engagement in the surrogate decision making process for SGM patients, 2) inform the development of an intervention designed to increase the quality and quantity of engagement with advance care planning among SGM communities, and 3) better prepare surrogates caring for SGM people. This supplement will further the aims of Dr. Torke’s original K24 proposal, to mentor the next generation of surrogate decision making researchers and to further understand the mechanisms of surrogate decision making. Dr. Torke will mentor Dr. Carey Candrian, a researcher who has conducted studies in advance care planning in the SGM community.

摘要 面对阿尔茨海默病和相关的痴呆症（ADRD）在亲人是具有挑战性的任何 但当患者或其决策者是性或性行为者时， 性别少数群体。虽然SGM个人已经成为社会的一个更明显的一部分， 积累了SGM老年人健康差异的证据。虽然Alexia Torke博士的K24 一项提案支持对涉及情感、精神和宗教问题的数据进行二次分析， 代理决策方面，该数据集不足以包括SGM的数量 与会者需要对这一弱势群体的经历进行严格的研究。鉴于 老年人群中ADRD的风险，需要进一步收集原始数据以了解其前景 代理人照顾SGM患者ADRD，以制定干预措施，提高质量， 决定和代理人的经验。本补充提案的具体目的是了解 照顾患有阿尔茨海默病的SGM个体的代理决策者的需求和经验， 相关痴呆症，并制定和试点测试一项调查，评估SGM个人对 参与代理决策过程。我们将首先对25-30名代孕者进行定性面试 最近照顾过SGM个体或目前正在照顾SGM个体的决策者， 阿尔茨海默氏症和相关痴呆症。我们将有目的地抽样混合的个人， 代理人是否是SGM，但照顾SGM个体。然后，我们会根据 目标1关于代理决策的需求和挑战。使用认知工具优化调查 采访了25名SGM老年人的小样本。本研究的结果将用于1）验证 评估SGM患者对代理决策过程的理解和参与的调查， 2)为制定干预措施提供信息， 在SGM社区中推进护理规划，以及3）更好地准备照顾SGM人的代理人。 这一补充将进一步博士托克的原始K24建议的目标，指导下一代的 代理决策的研究者，并进一步了解代理决策的机制 制作。Torke博士将指导Carey Candrian博士，他是一名研究人员，曾在预先护理方面进行过研究。 在SGM社区的规划。