Family First: Asian Americans’ Attitudes and Behaviors Toward Deceased Organ Donation
- 15 Downloads
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.
KeywordsOrgan donation Asian American Chinese Filipino Vietnamese Decision making
We thank the study participants for contributing to this research. We also thank the Indochinese American Council, the Philadelphia Chinatown Development Corporation, and the Filipino Executive Council of Greater Philadelphia, for their partnership and support of the project. We thank members of the research team who assisted with data collection and analyses—Ryan Blunt, Phil Jamora, Venise Salcedo, Yu-Cheng Wu, Anh Duong, Ellen Davis, and Sonali Shah. We are also grateful to our Community Advisory Board Members—Ernest Arcilla, Jay Hilario, Grace Wu Kong, Ferdinand Luyun, Ruth Luyun, Shirley Moy, Jen Ordillas, Denise Schlatter, Stephanie Sun, Hanh Tran, Le-Quyen Vu, and Cecilia Vo—for their leadership and guidance with all aspects of this study.
This study was funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) under grant number R01 DK11488.
Compliance with Ethical Standards
Conflict of Interest
The authors declare that they have no conflicts of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- 2.HHS (U.S. Department of Health and Human Services). Organ Donation Statistics.Google Scholar
- 3.U.S. Census Bureau. ACS demographic and housing estimates. 2013–2017 American Community Survey 5-year estimates. 2017. https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_17_5YR_DP05&prodType=table. Accessed December 14, 2018.
- 4.UNOS (United Network for Organ Sharing). Data. https://unos.org/data/. Published 2018. Accessed November 12, 2018.
- 5.OPTN (Organ Procurement and Transplantation Network). National Data - OPTN. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#. Published 2019. Accessed January 22, 2019.
- 6.Colby SL, Ortma JM. Projections of the size and composition of the U.S. population: 2014 to 2060, current population reports. United States Census Bur 2015:25–1143.Google Scholar
- 8.Newman KL, Fedewa SA, Jacobson MH, Adams AB, Zhang R, Pastan SO, et al. Racial/ethnic differences in the association between hospitalization and kidney transplantation among waitlisted end-stage renal disease patients. Transplantation. 2016;100(12):2735–45. https://doi.org/10.1097/TP.0000000000001072.Google Scholar
- 10.CDC NNDSS (Centers for Disease Control and Prevention National Notifiable Diseases Surveillance System). Viral Hepatitis Surveillance - United States, 2016. 2016. https://www.cdc.gov/hepatitis/statistics/2016surveillance/index.htm. Accessed March 26, 2019.
- 13.McCracken M, Olsen M, Chen MS, Jemal A, Thun M, Cokkinides V, et al. Cancer incidence, mortality, and associated risk factors among Asian Americans of Chinese, Filipino, Vietnamese, Korean, and Japanese ethnicities. CA Cancer J Clin. 2007;57(4):190–205. https://doi.org/10.3322/canjclin.57.4.190.Google Scholar
- 15.OPTN (Organ Procurement and Transplantation Network). Kaplan and Meier median waiting times, 2003–2014. https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#. Published 2018. Accessed November 12, 2018.
- 17.Wachterman MW, McCarthy EP, Marcantonio ER, Ersek M. Mistrust, misperceptions, and miscommunication: a qualitative study of preferences about kidney transplantation among African Americans. Transplant Proc. 2015;47(2):240–6. https://doi.org/10.1016/J.TRANSPROCEED.2015.01.016.Google Scholar
- 23.Wong KA, Cárdenas V, Shiu-Thornton S, Spigner C, Allen MD. How do communities want their information? Designing educational outreach on organ donation for Asian Americans. Prog Transplant. 2009;19(1):44–52. https://doi.org/10.7182/prtr.19.1.a224927075875286.Google Scholar
- 24.HHS (U.S. Department of Health and Human Services), HRSA (Health Resources and Services Administration), HSB (Healthcare Systems Bureau). 2012 National Survey of Organ Donation Attitudes and Behaviors. Rockville, MD; 2013. https://www.organdonor.gov/sites/default/files/about-dot/files/nationalsurveyorgandonation.pdf. Accessed January 31, 2019.
- 27.Albright C, Glanz K, Wong L, Dela Cruz MR, Abe L, Sagayadoro TL. Knowledge and attitudes about deceased donor organ donation in Filipinos: a qualitative assessment. Transplant Proc. 2005;37(10):4153–8. https://doi.org/10.1016/j.transproceed.2005.10.016.Google Scholar
- 28.Berg BL. Qualitative research methods for the social sciences. Pearson/Allyn & Bacon; 2007. https://books.google.com/books?id=aqXrAAAAMAAJ.
- 29.Siminoff LA, Traino HM, Genderson MW. Communicating effectively about organ donation: a randomized trial of a behavioral communication intervention to improve discussions about donation. Transpl Direct. 2015;1(2). https://doi.org/10.1097/TXD.0000000000000513.
- 34.SAS. SAS 9.4. 2017.Google Scholar
- 35.Glaser BG. Basics of grounded theory analysis: emergence vs forcing; 1992.Google Scholar
- 36.VERBI. MAXQDA Analytics Pro. 2018.Google Scholar
- 38.Siminoff L, Lawrence R, Medicine RA. Comparison of black and white families’ experiences and perceptions regarding organ donation requests. Crit Care. 2003;31(1).Google Scholar
- 42.Masuoka N, Han H, Leung V, Zheng BQ. Understanding the Asian American vote in the 2016 election. J Race Ethn Polit. 2018. https://doi.org/10.1017/rep.2017.34.
- 44.Molinari A. Share your life. Share your decision: how the campaign to increase organ donations provides a model for public health awareness efforts. Washington, D.C; 2015. www.CCTAwareness.org. Accessed March 29, 2019.
- 45.Almeida N, Almeida A. Community attitudes toward kidney donation in India. Transplant Proc. 2013;45(4):1307–9. https://doi.org/10.1016/j.transproceed.2013.01.038.Google Scholar
- 53.Gordon EJ, Feinglass J, Carney P, Ramirez D, Olivero M, O'Connor K, et al. An interactive, bilingual, culturally targeted website about living kidney donation and transplantation for Hispanics: development and formative evaluation. JMIR Res Protoc. 2015;4(2):e42. https://doi.org/10.2196/resprot.3838.Google Scholar