Mistrust, Misperceptions, and Miscommunication: A Qualitative Study of Preferences About Kidney Transplantation Among African Americans

•We interviewed African American dialysis patients to learn transplantation preferences.•Patients have varied desire for a transplant and concerns about donor source.•Patients experience barriers to transplantation and lack of communication with providers.•Mistrust about equity in the transplantation process permeates the other themes.•Discordance between perceived and actual transplantation listing status is common.

BackgroundKidney transplantation rates in the United States are lower among African Americans than among whites. Well-documented racial disparities in access to transplantation explain some, but not all, of these differences. Prior survey-based research suggests that African American dialysis patients are less likely than whites to desire transplantation, but little research has focused on an in-depth exploration of preferences about kidney transplantation among African Americans. Thus, the purposes of this study were to explore preferences and to compare patients' expectations about transplantation with actual status on the transplant list.MethodsWe conducted semistructured interviews with 16 African Americans receiving chronic hemodialysis. We analyzed the interviews using the constant comparative method of qualitative analysis. We also reviewed the dialysis center's transplant list.ResultsFour dominant themes emerged: (1) varied desire for transplant; (2) concerns about donor source; (3) barriers to transplantation; and (4) lack of communication with nephrologists and the transplantation team. A thread of mistrust about equity in the transplantation process flowed through themes 2–4. In 7/16 cases, patients' understanding of their transplant listing status was discordant with their actual status.ConclusionsOur study suggests that many African Americans on hemodialysis are interested in kidney transplantation, but that interest is often tempered by concerns about transplantation, including misconceptions about the risks to recipients and donors. Mistrust about equity in the organ allocation process also contributed to ambivalence. The discordance between patients' perceptions of listing status and actual status suggests communication gaps between African American hemodialysis patients and physicians. Clinicians should avoid interpreting ambivalence about transplantation as lack of interest.