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Family First: Asian Americans’ Attitudes and Behaviors Toward Deceased Organ Donation

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Abstract

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.

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References

  1. Shanmugarajah K, Villani V, Madariaga MLL, Shalhoub J, Michel SG. Current progress in public health models addressing the critical organ shortage. Int J Surg. 2014;12(12):1363–8. https://doi.org/10.1016/J.IJSU.2014.11.011.

    Article  PubMed  Google Scholar 

  2. HHS (U.S. Department of Health and Human Services). Organ Donation Statistics.

  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.

  7. Guidinger MK, Zhang H, Schaubel DE, Merion RM, Mathur AK. Disparities in liver transplantation. Transplantation. 2013;97(8):862–9. https://doi.org/10.1097/01.tp.0000438634.44461.67.

    Article  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.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Kin KC, Lin B, Chaung KT, Ha NB, Trinh HN, Garcia RT, et al. Less-established risk factors are common in Asian Americans with hepatitis C virus: a case–controlled study. Dig Dis Sci. 2013;58(11):3342–7. https://doi.org/10.1007/s10620-013-2884-6.

    Article  CAS  PubMed  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.

  11. Le AK, Zhao C, Hoang JK, et al. Ethnic disparities in progression to advanced liver disease and overall survival in patients with chronic hepatitis C: impact of a sustained virological response. Aliment Pharmacol Ther. 2017;46(6):605–16. https://doi.org/10.1111/apt.14241.

    Article  CAS  PubMed  Google Scholar 

  12. Yip B, Wantuck JM, Kim LH, Wong RJ, Ahmed A, Garcia G, et al. Clinical presentation and survival of Asian and non-Asian patients with HCV-related hepatocellular carcinoma. Dig Dis Sci. 2014;59(1):192–200. https://doi.org/10.1007/s10620-013-2948-7.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  14. Mathur AK, Schaubel DE, Gong Q, Guidinger MK, Merion RM. Racial and ethnic disparities in access to liver transplantation. Liver Transplant. 2010;16(9):1033–40. https://doi.org/10.1002/lt.22108.

    Article  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.

  16. Siminoff LA, Burant CJ, Ibrahim SA. Racial disparities in preferences and perceptions regarding organ donation. J Gen Intern Med. 2006;21(9):995–1000. https://doi.org/10.1111/j.1525-1497.2006.00516.x.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  18. Williamson LD, Reynolds-Tylus T, Quick BL, Shuck M. African-Americans’ perceptions of organ donation: ‘simply boils down to mistrust!’. J Appl Commun Res. 2017;45(2):199–217. https://doi.org/10.1080/00909882.2017.1288293.

    Article  Google Scholar 

  19. Siegel JT, O’Brien EK, Alvaro EM, Poulsen JA. Barriers to living donation among low-resource Hispanics. Qual Health Res. 2014;24(10):1360–7. https://doi.org/10.1177/1049732314546869.

    Article  PubMed  Google Scholar 

  20. Salim A, Schulman D, Ley EJ, Berry C, Navarro S, Chan LS. Contributing factors for the willingness to donate organs in the Hispanic American population. Arch Surg. 2010;145(7):684–9. https://doi.org/10.1001/archsurg.2010.110.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Salim A, Ley EJ, Berry C, Schulman D, Navarro S, Zheng L, et al. Effect of community educational interventions on rate of organ donation among Hispanic Americans. JAMA Surg. 2014;149(9):899–902. https://doi.org/10.1001/jamasurg.2014.1014.

    Article  PubMed  Google Scholar 

  22. Trompeta JA, Cooper BA, Ascher NA, Kools SM, Kennedy CM, Chen JL. Asian American adolescents’ willingness to donate organs and engage in family discussion about organ donation and transplantation. Prog Transplant. 2012;22:33–70. https://doi.org/10.7182/pit2012328.

    Article  PubMed  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.

    Article  PubMed  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.

  25. Pham H, Spigner C. Knowledge and opinions about organ donation and transplantation among Vietnamese Americans in Seattle, Washington: a pilot study. Clin Transpl. 2004;18(6):707–15. https://doi.org/10.1111/j.1399-0012.2004.00284.x.

    Article  Google Scholar 

  26. Park HS, Smith SW, Yun D. Ethnic differences in intention to enroll in a state organ donor registry and intention to talk with family about organ donation. Health Commun. 2009;24(7):647–59. https://doi.org/10.1080/10410230903242259.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  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.

    Article  Google Scholar 

  30. Siminoff L, Mercer MB, Graham G, Burant C. The reasons families donate organs for transplantation: implications for policy and practice. J Trauma Inj Infect Crit Care. 2007;62(4):969–78. https://doi.org/10.1097/01.ta.0000205220.24003.51.

    Article  Google Scholar 

  31. Siminoff LA, Burant C, Youngner SJ. Death and organ procurement: public beliefs and attitudes. Soc Sci Med. 2004;59(11):2325–34. https://doi.org/10.1016/j.socscimed.2004.03.029.

    Article  PubMed  Google Scholar 

  32. Siminoff LA, Gordon N, Hewlett J, et al. Factors influencing families’ consent for donation of solid organs for transplantation. JAMA. 2001;286(1):71. https://doi.org/10.1001/jama.286.1.71.

    Article  CAS  PubMed  Google Scholar 

  33. Siminoff LA, Saunders Sturm CM. African-American reluctance to donate: beliefs and attitudes about organ donation and implications for policy. Kennedy Inst Ethics J. 2000;10(1):59–74 http://www.ncbi.nlm.nih.gov/pubmed/11658155.

    PubMed  Google Scholar 

  34. SAS. SAS 9.4. 2017.

  35. Glaser BG. Basics of grounded theory analysis: emergence vs forcing; 1992.

  36. VERBI. MAXQDA Analytics Pro. 2018.

  37. Goldberg DS, Halpern SD, Reese PP. Deceased organ donation consent rates among racial and ethnic minorities and older potential donors. Crit Care Med. 2013;41(2):496–505. https://doi.org/10.1097/CCM.0b013e318271198c.

    Article  PubMed  PubMed Central  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).

    Article  PubMed  Google Scholar 

  39. Sehgal NKR, Scallan C, Sullivan C, Cedeño M, Pencak J, Kirkland J, et al. The relationship between verified organ donor designation and patient demographic and medical characteristics. Am J Transplant. 2016;16(4):1294–7. https://doi.org/10.1111/ajt.13608.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  40. Nobel YR, Forde KA, Wood L, Cartiera K, Munoz-Abraham AS, Yoo PS, et al. Racial and ethnic disparities in access to and utilization of living donor liver transplants. Liver Transpl. 2015;21(7):904–13. https://doi.org/10.1002/lt.24147.

    Article  PubMed  Google Scholar 

  41. Jacob Arriola KR, Robinson DHZ, Perryman JP, Thompson N. Understanding the relationship between knowledge and African Americans’ donation decision-making. Patient Educ Couns. 2008;70(2):242–50. https://doi.org/10.1016/j.pec.2007.09.017.

    Article  PubMed  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.

    Article  Google Scholar 

  43. Cai Y. On family informed consent in the legislation of organ donation in China. Cham: Springer; 2015. p. 187–99. https://doi.org/10.1007/978-3-319-12120-8_12.

    Book  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  46. Balajee K, Ramachandran N, Subitha L. Awareness and attitudes toward organ donation in rural Puducherry, India. Ann Med Health Sci Res. 2016;6(5):286. https://doi.org/10.4103/amhsr.amhsr_63_15.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  47. Vijayalakshmi P, Sunitha TS, Gandhi S, Thimmaiah R, Math SB. Knowledge, attitude and behaviour of the general population towards organ donation: an Indian perspective. Natl Med J India. 2016;29(5):257–61 http://www.ncbi.nlm.nih.gov/pubmed/28098078. Accessed March 26, 2019.

    PubMed  Google Scholar 

  48. Martins PN, Mustian MN, MacLennan PA, et al. Impact of the new kidney allocation system A2/A2B → B policy on access to transplantation among minority candidates. Am J Transplant. 2018;18(8):1947–53. https://doi.org/10.1111/ajt.14719.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  49. Suzuki BH. Revisiting the model minority stereotype: implications for student affairs practice and higher education. New Dir Stud Serv. 2002;2002(97):21–32. https://doi.org/10.1111/j.1553-2712.2011.01245.x.

    Article  Google Scholar 

  50. Weller CE, Thompson JP. Wealth inequality more pronounced among Asian Americans than among whites. Challenge. 2018;61(2):183–202. https://doi.org/10.1080/05775132.2018.1443998.

    Article  Google Scholar 

  51. Gordon EJ, Lee J, Kang R, Ladner DP, Skaro AI, Holl JL, et al. Hispanic/Latino disparities in living donor kidney transplantation: role of a culturally competent transplant program. Transpl Direct. 2015;1(8):e29. https://doi.org/10.1097/TXD.0000000000000540.

    Article  Google Scholar 

  52. Vaughn S. Stroke and heart disease prevention education via telenovela: a focus group’s evaluation. Rehabil Nurs. 2012;37(5):215–9. https://doi.org/10.1002/rnj.53.

    Article  PubMed  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.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgments

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.

Funding

This study was funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) under grant number R01 DK11488.

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  1. College of Public Health, Temple University, Philadelphia, PA, USA

    Laura A. Siminoff, Susan Bolt, Heather M. Gardiner & Gerard P. Alolod

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  1. Laura A. Siminoff
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  2. Susan Bolt
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Correspondence to Laura A. Siminoff.

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Siminoff, L.A., Bolt, S., Gardiner, H.M. et al. Family First: Asian Americans’ Attitudes and Behaviors Toward Deceased Organ Donation. J. Racial and Ethnic Health Disparities 7, 72–83 (2020). https://doi.org/10.1007/s40615-019-00635-3

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