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Siminoff LA , Bolt S , Gardiner HM , Alolod GP
Family First: Asian Americans' Attitudes and Behaviors Toward Deceased Organ Donation
J Racial Ethn Health Disparities. 2020 Feb;7(1) :72-83
PMID: 31493296    PMCID: PMC6980458   
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Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.
2196-8837 Siminoff, Laura A Orcid: 0000-0002-6775-665x Bolt, Susan Orcid: 0000-0002-9183-4937 Gardiner, Heather M Orcid: 0000-0003-2017-991x Alolod, Gerard P Orcid: 0000-0001-7137-5967 R01 DK114881/DK/NIDDK NIH HHS/United States R01 DK11488/DK/NIDDK NIH HHS/United States Evaluation Study Journal Article Research Support, N.I.H., Extramural J Racial Ethn Health Disparities. 2020 Feb;7(1):72-83. doi: 10.1007/s40615-019-00635-3. Epub 2019 Sep 6.