The parent R01 is identifying the attitudes and beliefs about organ donation among Asian Americans, which will substantially add to our currently sparse knowledge base of this population?s organ donation preferences despite its elevated transplantation needs.
The final aim of the parent study is to create a culturally tailored intervention to raise awareness about organ donation among Asian Americans and to increase their rates of pre-designation as organ donors. Informed by data collected through the parent grant, the proposed supplement will examine how Asian Americans? understandings of autonomy impact decision-making around organ donation and healthcare. The data collected through the parent study indicate that the healthcare decision-making process among Asian Americans is inconsistent with Western notions of autonomy, which place primacy on self-determination and individual preferences. For the proposed supplement, we will re-analyze existing focus group data using a narrative analysis approach. We will also develop a series of organ donation vignettes to conduct 30 in-depth qualitative interviews with Asian Americans. The expected findings will expand our understanding of Asian Americans? decision-making about organ donation, elucidate the role of autonomy in this process, and inform the development of the intervention planned under the parent grant. The supplement?s findings may also have considerable implications on how to encourage Asian Americans? enrollment on online donor registries and authorization of surrogate donation in hospital settings.
Decision-making about healthcare and organ donation is rooted in an individualized concept of autonomy in the United States. Data collected from the parent study, which examines Asian Americans' organ donation- related attitudes and beliefs, indicates that decision-making among this population centers on the family. The proposed supplement will collect information specifically about the role of autonomy. These data will help to inform a pilot intervention that will be developed and implemented as part of the parent study.
