Guilt and ambivalence: An exploration of beliefs about bone marrow and peripheral stem cell donation among Korean Americans

Background: Hematopoietic stem cell (HSC) transplantation is a potentially curative therapy for hematologic malignancies. This requires identification of an antigen-matched donor, and then harvest of donor bone marrow or peripheral stem cells for infusion into the patient. Compared to Whites, Asian patients are less likely to receive an HSC transplant after searching the National Marrow Donor Program (NMDP) registry; this is partly attributable to inadequate numbers of potential Asian donors.

Purpose: To identify factors among Korean Americans that influence enrollment into the NMDP registry.

Methods: Participants were recruited from those who enrolled and those who declined to enroll during two community NMDP registry drives. In-depth, semistructured interviews were conducted among Korean adults age 18-60. Topics included cultural beliefs and knowledge regarding HSC donation. Interviews were translated, transcribed, and reviewed for themes and relationships between concepts.

Results: Content analysis of the first 13 interviews has identified several recurring themes. Religiosity and altruism were common among “enrollees”. Anxiety, confusion about the process, and the perceived pain of donation were expressed as barriers. Guilt about not enrolling was balanced by ambivalence regarding the possibility of a future “match”, and many stated that they were more likely to donate if they personally knew the recipient.

Conclusions: Current recruitment strategies to increase the HSC donor pool among Asian Americans may not adequately address the culturally-specific concerns of potential donors. These preliminary data will be used to adapt recruitment material as an effort to increase the number of potential donors available to Asian American patients.