Next-Gen ethnography to understand decision-making among diverse populations impacted by Alzheimer'sdisease and related dementias (ADRD)

项目摘要/摘要（家长资助） 文化是健康和医疗保健决策的核心，特别是在阿尔茨海默氏症中 疾病及相关痴呆（ADRD）。文化塑造了患者和护理人员的社区 经验ADRD和文化塑造了医疗和社会机构如何管理ADRD。作为一名专家， 文化社会学，我已经开发了严格的和可复制的文化研究的新方法， 健康和医学的背景。到目前为止，我的研究主要集中在文化和癌症。但在 在过去的三年里，我一直从事与ADRD相关的研究。我正在申请NIA BSR LEADR 奖，把我的专业知识，ADRD研究领域。我提出一个项目有两个目标：第一， 文化如何塑造不同人群的ADRD经历;第二，为了利用这一改善 了解文化，为ADRD利益相关者提供定制的决策支持。我提议的项目 包括四项活动来实现这些目标。(1)使用比较民族志-定性社会 科学方法是研究文化的主要方法-审查在下列国家和地区开展反种族歧视活动的经验： 在各种机构环境中接受护理的不同人群。(2)开发新的方法， 分析和介绍比较民族志产生的定性数据。(3)表征 在受严重干旱和退化所致疾病影响的不同人群中制定决策战略，包括社区和 体制文化塑造了这些战略。(4)提出利用对决策的新理解的工具- 制定策略，以支持不同人群中的患者、护理人员和临床医生的决策， 机构职能体系该项目的成果包括对文化如何塑造ADRD的新理解， 受ADRD影响的不同人群;收集、分析和呈现有关数据的新方法 培养，实现高水平的严谨性和可重复性;并确定新的方法和目标， 采取干预措施，改善对受严重急性RD影响的个人、社区和机构的决策支持。

Project Summary/Abstract (Parent Grant) Culture is central to decision-making in health and healthcare and especially consequential in Alzheimer’s disease and related dementias (ADRD). Culture shapes how communities of patients and caregivers experience ADRD, and culture shapes how medical and social institutions manage ADRD. As an expert in the sociology of culture, I have developed novel methods for the rigorous and replicable study of culture in the context of health and medicine. To date, my research has largely focused on culture and cancer. However, in the last three years I have become engaged in studies related to ADRD. I am applying for the NIA BSR LEADR award to bring my expertise to the field of ADRD research. I propose a project with two goals: first, to explain how culture shapes experiences of ADRD in diverse populations; second, to leverage this improved understanding of culture to develop tailored decision-support for ADRD stakeholders. My proposed project includes four activities to accomplish these goals. (1) Use comparative ethnography – a qualitative social science approach which is a principal approach for studying culture – to examine experiences of ADRD among diverse populations who receive care in a variety of institutional settings. (2) Develop novel methods for the analysis and presentation of the qualitative data produced by the comparative ethnography. (3) Characterize strategies of decision-making among diverse populations impacted by ADRD, including how community and institutional cultures shape those strategies. (4) Propose tools that leverage new understandings of decision- making strategies to support patient, caregiver, and clinician decision-making in diverse populations and institutions. The outcomes of this project include new understandings of how culture shapes ADRD among diverse populations impacted by ADRD; novel methods for gathering, analyzing, and presenting data about culture that achieve high levels of rigor and reproducibility; and identification of new approaches and targets for interventions to improve decision-support for individuals, communities and institutions impacted by ADRD.