Indigenous Cultural Understandings of Alzheimer's Disease and Related Dementias - Research and Engagement (I-CARE)

土著文化对阿尔茨海默病和相关痴呆症的理解 - 研究和参与 (I-CARE)

基本信息

批准号：
9790905
负责人：
Kristen Jacklin
金额：
$ 75.84万
依托单位：
UNIVERSITY OF MINNESOTA
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-09-30 至 2021-02-28
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9790905
关键词：
Address Adopted Affect Aging Alzheimer&apos s Disease Alzheimer&apos s disease related dementia American Indians Biological Caregivers Caring Chronic Disease Communities Coupled Data Data Set Dementia Diagnosis Diagnostic Procedure Disease Early Diagnosis Economics Education Elderly Elements Ethnography Eye Family Focus Groups Foundations Great Lakes Region Health Health Care Seeking Behavior Health Resources Healthcare Systems Illness impact Incidence Indigenous Individual Intervention Interview Investments Knowledge Light Literature Measures Methods Minnesota Modeling Multicultural Education Native-Born North America Ojibwe Ontario Participant Patients Perception Persons Politics Population Population Research Prevalence Procedures Quality of life Race Recommendation Research Research Design Shapes Shoulder Site Staging Sum Symptoms Wisconsin Work age related base burden of illness care outcomes care providers community based participatory research contextual factors dementia caregiving design ethnographic method experience health care quality improved indigenous community informant knowledge base personalized approach social social health determinants tool

项目摘要

Our research aims to improve the lives of American Indian/First Nations (AI/FN) persons with dementia (PWD) by examining the impact of the disease on patients, families and communities. This community-based participatory research (CBPR) engages AI/FN communities in Ontario, Wisconsin and Minnesota. We will collect and analyze qualitative data about the lived experience of Alzheimer’s and its Related Dementias (ADRD) using methods successfully established in our previous research, including participant observation, sequential in-depth interviews and sequential focus groups. Our overarching hypothesis is that culture and community-specific context shape the ADRD illness experience in Indigenous populations and create unique impacts of ADRD that require culturally tailored approaches to diagnosis and care. Compared to majority populations, AI/FN peoples are disproportionately and uniquely impacted by dementia and by other related chronic diseases. AI/FN people are living longer and have higher rates of age-related disease, yet, there has been little research that sheds light on peoples’ everyday experiences of ADRD. Our earlier research found that AI/FN people view symptoms of ADRD as a natural part of the biological and spiritual lifecycle. This cultural understanding, along with poor experiences with the health care system, makes it less likely that AI/FN older adults will be diagnosed early and receive good care. Research is needed to understand what contributes to early diagnosis, quality of health care and quality of life for PWD and their families. We propose to (a) examine experiences and impacts across the dementia illness trajectory, and (b) determine what Indigenous peoples want in terms of outcomes of health care. Our specific aims are to examine the lived experiences of people with dementia as the illness progresses in 3 diverse AI/FN communities to identify cultural and community factors influencing the impacts of ADRD on PWD, families and communities. We will analyze how perceptions of ADRD and the illness experience influence health care seeking behaviors and the impact of the illness. We will examine how community-specific Social Determinants of Health influence the impact of ADRD on PWD, their families and communities. We will place the specific cultural understanding of dementia within the broader context of criteria to assess quality of life, diagnosis and how dementia stages are understood to determine appropriate methods to diagnose and measure ADRD in AI/FN peoples. In sum, our research is designed to discover cultural understandings of ADRD and aging that can be used to create specific approaches to assessing and managing ADRD and its impacts in these communities. Our analysis combines western and AI/FN explanatory models of illness so that our findings can be turned into recommendations and interventions that are meaningful and accepted to the people participating in the study and can be adopted broadly by other Indigenous communities across North America.

我们的研究旨在改善美洲印第安人/原住民 (AI/FN) 痴呆症患者 (PWD) 的生活通过检查疾病对患者、家庭和社区的影响。参与式研究 (CBPR) 让安大略省、威斯康星州和明尼苏达州的 AI/FN 社区参与进来。收集和分析有关阿尔茨海默氏症及其相关痴呆症生活经历的定性数据（ADRD）使用我们之前研究中成功建立的方法，包括参与观察，我们的首要假设是文化和连续的深入访谈和连续的焦点小组。社区特定环境塑造了原住民 ADRD 疾病经历，并创造了独特的 ADRD 的影响需要根据文化定制诊断和护理方法。与大多数人群相比，AI/FN 人群受到痴呆症的影响尤为严重且独特以及其他相关的慢性疾病，人们的寿命更长，并且与年龄相关的发病率更高。然而，很少有研究能够揭示人们 ADRD 的日常经历。早期研究发现，AI/FN 人群将 ADRD 症状视为生物和疾病的自然组成部分。这种文化理解，加上医疗保健系统的糟糕经验，使得 AI/FN 老年人较早被诊断并接受良好护理的可能性较小，需要进行研究。了解什么有助于残疾人及其患者的早期诊断、医疗保健质量和生活质量我们建议 (a) 研究痴呆症疾病轨迹的经历和影响，以及 (b) 确定土著人民对医疗保健结果的需求。我们的具体目标是调查痴呆症患者在 3 年内病情进展的生活经历不同的 AI/FN 社区，以确定影响 ADRD 对人的影响的文化和社区因素我们将分析残疾人士、家庭和社区对 ADRD 的看法和疾病经历。我们将研究如何影响就医行为和疾病的影响。健康的社会决定因素会影响 ADRD 对残疾人及其家庭和社区的影响。将对痴呆症的具体文化理解置于更广泛的标准背景下，以评估痴呆症的质量生活、诊断以及如何理解痴呆症阶段以确定适当的诊断和治疗方法总之，我们的研究旨在发现对 AI/FN 人群的文化理解。 ADRD 和老龄化可用于创建评估和管理 ADRD 及其相关疾病的具体方法对这些社区的影响。我们的分析结合了西方和 AI/FN 疾病解释模型，以便我们的研究结果可以转化纳入有意义并为参与活动的人们所接受的建议和干预措施研究并可以被北美其他原住民社区广泛采用。