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

基本信息

批准号：
10172890
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
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-08-01 至 2023-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10172890
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 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 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 Transplant Recipients Transplantation United Network for Organ Sharing Wait Time Waiting Lists base care outcomes community engagement cost effective distrust intervention mapping liver transplantation multi-racial response

项目摘要

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.

项目概要作为一个集体群体，亚裔美国人人口 (AAP) 仅占总人口的 5.4%，但他们已成为增长最快的种族群体，预计未来 20 年增长 128%。群体在人口中所占比例相对较小，再加上 AAP 的主流观点是 “模范少数族裔”群体，导致 AAP 在有关健康和健康的全国对话中被危险地遗漏。器官移植作为终末期肾病 (ESRD) 和末期肝病的治疗方式具体来说，截至 10 月份，他们占国家器官候补名单上所有个体的 7.6%。 2016年12月14日，但仅占所有已故捐献者的2.7% 由于AAP对肝脏的需求也很大。丙型肝炎感染和由此导致的肝功能衰竭的发生率很高，估计每 12 个 AAP 中就有一个患有此病。乙型肝炎，一半的美国人患有乙型肝炎，因此，移植可能未被充分利用。途径和先进的肝移植知识可能最终会降低最终的患病率因 ESLD 和相关癌症而死亡。针对缺乏有关器官捐献相关态度和知识的现有研究在 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，调查结果将构成家庭。关于 AAP 对器官捐献的态度和知识的第一个国家级知识体系。该过程还将受到社区咨询委员会 (CAB) 的指导，该委员会由社区和宗教人士组成来自当地亚裔美国人社区的领导人将允许开发和测试适合文化的试点干预措施，有助于增加死者捐赠的捐赠者指定并考虑活体捐赠的结果也将作为未来更大规模的基础。增加 AAP 中死者和活体捐赠指定的干预措施。