Count Me Out: Perceptions of Black Patients Who are on Dialysis but Who are Not on a Transplant Waitlist

ABSTRACT

End-stage renal disease (ESRD) is characterized by racial inequity; Blacks are 3 times more likely to develop ESRD than Whites. Transplant is the preferred treatment option since transplanted patients experience better clinical outcomes. Racial inequities persist at each of the steps required for transplantation. Despite the vast literature describing these racial inequities, it does not include dialysis patients’ awareness and understanding of treatment options, specifically for transplant. To address this gap, we purposely sampled Blacks in Detroit who were receiving dialysis and who were not active on any transplant waitlist to investigate their understanding and perceptions of transplants. We used uncertainty management theory (UMT) to better understand perceived barriers to getting and remaining on a transplant waitlist. We aimed to address a critical gap in the literature to inform approaches addressing this enduring inequity. For this qualitative study, we conducted individual, semi-structured interviews with 24 Black ESRD patients, aged 34–73 years: 9 male and 15 female. Participants shared their experiences of being on dialysis, perceptions, and understanding of transplants. We describe two key findings: 1) uncertainty for these patients is prevalent and multi-layered and 2) social support can both dissuade an individual from pursuing transplant (i.e., reluctance to ask family members to be donors) and it can result in decreasing uncertainty (e.g., participants wanting to pursue transplant to be with family). We highlight the specific need to improve patient education regarding treatment options and enhancing how relevant health information can be communicated.

Acknowledgments

The authors want to thank the NKF of Michigan whose help was paramount in contacting and recruiting participants for the study. The authors would also like to thank the participants of the study who shared deeply personal and moving stories.

Disclosure of potential conflict of interest

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.