Understanding and Planning Donation Information Needs of Asian American Communities

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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.