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

下一代民族志可了解受阿尔茨海默病和相关痴呆症 (ADRD) 影响的不同人群的决策

• 批准号: 10093953
• 负责人: Daniel P. Dohan
• 金额: $ 309.62万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10093953
• 关键词: Alzheimer' s disease related dementia; Award; Caregivers; Caring; Communities; Consequentialism; Data; Decision Making; Ethnography; Goals; Health; Healthcare; Individual; Institution; Intervention; Malignant Neoplasms; Medical; Medicine; Methods; Outcome; Patients; Population Heterogeneity; Reproducibility; Research; Shapes; Social Sciences; Sociology; comparative; experience; improved; novel; novel strategies; social; tool

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.

文化是健康和医疗保健决策的核心，在阿尔茨海默病和相关痴呆（ADRD）中尤其重要。文化决定了患者和护理人员社区如何经历ADRD，文化决定了医疗和社会机构如何管理ADRD。作为一名文化社会学的专家，我开发了新的方法，在健康和医学的背景下对文化进行严格和可复制的研究。到目前为止，我的研究主要集中在文化和癌症上。然而，在过去的三年里，我开始从事与ADRD相关的研究。我正在申请NIA BSR LEADR奖，以将我的专业知识带到ADRD研究领域。我提出了一个有两个目标的项目：第一，解释文化如何影响不同人群的ADRD经历；第二，利用这种对文化的改进理解，为ADRD利益相关者开发量身定制的决策支持。我提议的项目包括四个活动来实现这些目标。(1)使用比较民族志——一种定性的社会科学方法，是研究文化的主要方法——来检查在各种机构环境中接受治疗的不同人群的ADRD经历。(2)开发新的方法来分析和呈现由比较民族志产生的定性数据。(3)描述受ADRD影响的不同人群的决策策略，包括社区和机构文化如何影响这些策略。(4)提出工具，利用对决策策略的新理解来支持不同人群和机构中的患者、护理人员和临床医生的决策。该项目的成果包括对文化如何在受ADRD影响的不同人群中塑造ADRD的新理解；收集、分析和呈现培养数据的新方法，达到高度严谨和可重复性；确定新的干预方法和目标，以改善对受ADRD影响的个人、社区和机构的决策支持。