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

Abstract

Asian Americans have substantial transplantation needs but the lowest rates of organ donation in the United States. 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.

A Qualitative Study in Family Units on Organ Donation: Attitude, Influencing Factors and Communication Patterns

“…Demographic factors such as age, gender, education level, occupation and nationality are also associated with being a donor ( 11 – 13 ). Previous studies have shown that family played an essential role in organ donation ( 14 , 15 ). Researchers collected 1886 questionnaires on organ donation from 11 cities in China, they found that 69.9% of participants considered family consent necessary and 77.1% thought that the view of their family had a great, even decisive, influence on them to decide to become donors ( 16 ).…”

Opinions of healthcare students on organ and tissue donation for transplantation

“…It is worth noting that the fact of perceiving donation as an act of love for others, of solidarity or as an act that saves lives contributes to a favorable decision, but it is not the determining factor in the choice to be a donor or consent to harvesting a relative's organs. The individual may have positive perceptions, but this does not mean that there is a real desire to be a donor (9)(10)24) . In this direction, a Spanish study identified that 1.855 (20%) medical students interviewed were undecided or would deny the donation, a high number considering the area of training (17) .…”

“…In general, these taboos are related to beliefs such as the existence of an organ trade market, the practice of euthanasia by health professionals, and the disfigurement of the body after donation. These perceptions are very common and contribute to attitudes against organ donation (7,10,18,24) . This is corroborated by a Mexican study carried out with 331 medical and nursing students, in which it was possible to identify these beliefs, along with fear of pain during the surgical procedure or negligence of professionals (1) .…”

“…A survey conducted in Turkey with 240 students from different healthcare courses showed that 170 (70.9%) had not talked about the subject with their family. Similarly, a study carried out with Asian Americans found that, among the 64 respondents, many had not addressed the subject with their relatives, even though half of them showed favorable attitudes about donation (24) . Thus, it is important to have public policies that inform the population and encourage dialogue on the subject, especially in the family nucleus.…”

Long-Term Outcomes and Prognosticators of Pediatric Primary Dilated Cardiomyopathy in an Asian Cohort

“…This is largely attributed to there being few heart donors in Taiwan, particularly infants and young children. Several major barriers to organ donation have been noted in Asian populations (26)(27)(28). East Asians traditionally desire an intact body at death to comply with the concept of filial piety within Confucianism (26).…”