Understanding and Planning Donation Information Needs of Asian American Communities

了解和规划亚裔美国人社区的捐赠信息需求

• 批准号: 9393483
• 负责人: LAURA A. SIMINOFF
• 金额: $ 23.78万
• 依托单位: TEMPLE UNIV OF THE COMMONWEALTH
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-01 至 2022-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9393483
• 关键词: Address; Affect; African American; Alaska; American; Asian Americans; Asians; Attitude; Authorization documentation; Awareness; Behavior; Belief; Cessation of life; Communities; Consent; Country; Dangerousness; Development; Dialysis procedure; End stage renal failure; Ethnic group; Exhibits; Family; Focus Groups; Future; Growth; Hawaii; Health; Health Personnel; Healthcare; Hepatitis B; Hepatitis C Incidence; Hispanics; Individual; Infection; Intervention; Kidney Diseases; Kidney Transplantation; Knowledge; Language; Laws; Liver; Liver Failure; Liver diseases; Living Donors; Mainstreaming; Malignant Neoplasms; Measures; Methodology; Minor; Minority Groups; Modality; Modeling; Needs Assessment; New York; Organ; Organ Donations; Organ Transplantation; Outcome; Patients; Persons; Population; Population Heterogeneity; Preparation; Prevalence; Probability; Process; Publishing; Quality of life; Race; Religion and Spirituality; Religious Belief; Renal dialysis; Research; Review Literature; Series; Societal Factors; Solid; Source; Surveys; Testing; Therapeutic; Time; Transplant Recipients; Transplantation; United Network for Organ Sharing; Waiting Lists; base; cost effective; liver transplantation; response

PROJECT SUMMARY As a collective group, Asian American Populations (AAPs) account for only 5.4% of the population, but they have become the fastest growing racial group with an estimated growth of 128% in the next 20 years. This group's relatively small proportion of the population, combined with mainstream perspectives of AAPs as a “model minority” group, has led to a dangerous omission of AAPs in national conversations about health and organ transplantation as a therapeutic modality to End Stage Renal Disease (ESRD) and End Stage Liver Disease (ESLD). Specifically, they comprise 7.6% of all individuals on the national organ waitlist as of October 14, 2016, but only account for 2.7% of all deceased donors. The need for livers among AAPs is also great due to high incidence of Hepatitis C infection and resultant hepatic failure. An estimated one in 12 AAPs also have Hepatitis B, and half of all Americans with Hepatitis B are AAPs. Thus, transplantation may be an underutilized avenue, and advanced knowledge of liver transplantation may ultimately reduce the prevalence of eventual death due to ESLD and also associated cancers. In response to the dearth of available studies about organ donation related attitudes and knowledge among AAPs, this study proposes to extend our understanding of the factors that affect donation from AAP families through a rigorous series of focus groups and a national probability survey. The findings will constitute the most the first national-level body of knowledge about AAPs' attitudes and knowledge about organ donation. The process will also be guided by a Community Advisory Board (CAB), composed of community and religious leaders from locally based Asian American communities. The CAB will allow for the development and testing of a culturally appropriate pilot intervention that can assist in increasing donor designation for deceased donation and consideration of living donation. The results will also serve as the basis for future, larger scale interventions for increasing deceased and living donation designations among AAPs.

项目摘要 作为一个集体群体，亚裔美国人人口（AAP）仅占人口的5.4%，但 他们已成为增长最快的种族群体，预计在未来20年内将增长128%。这 这一群体在人口中所占比例相对较小，再加上主流观点认为年度行动方案是一个 “模范少数”群体，导致了在关于健康和 器官移植作为终末期肾病（ESRD）和终末期肝病的治疗方式 疾病（ESLD）。具体而言，截至10月，他们占国家器官等待名单上所有个人的7.6% 14，2016，但仅占所有已故捐赠者的2.7%。AAP对肝脏的需求也很大， 丙型肝炎感染的高发病率和由此导致的肝功能衰竭。据估计，每12个年度行动计划中就有一个 B型肝炎，一半的美国B型肝炎患者是AAP。因此，移植可能是一个未充分利用的 先进的肝移植知识可能最终会降低最终肝移植的患病率。 由于ESLD和相关癌症导致的死亡。 针对缺乏关于器官捐赠相关态度和知识的研究， 在AAP中，本研究旨在扩展我们对影响AAP捐赠的因素的理解 通过一系列严格的焦点小组和全国概率调查，对家庭进行了调查。调查结果将构成 这是第一个关于AAP对器官捐赠的态度和知识的国家级知识体系。 这一进程还将由社区咨询委员会（CAB）指导，该委员会由社区和宗教团体组成。 来自当地亚裔美国人社区的领导人。CAB将允许开发和测试 一项文化上适当的试点干预措施，可以帮助增加死者捐赠的捐赠者指定 以及考虑活体捐赠。结果也将作为未来更大规模的基础 在AAP中增加死者和活体捐赠指定的干预措施。