"Well, I Think It's Institutional Racism:" How Pediatric Dialysis and Transplant Social Workers Explain Racial Disparities in Kidney Transplant Access

Background and Purpose: Existing research has repeatedly shown that Black children with end stage kidney disease (ESKD) have significantly increased mortality risk, decreased transplant rate, and spend more cumulative time on dialysis than other children. When interdisciplinary team members are asked to explain similar disparities in adult patients, over 80% name “patient level attributes” and psychosocial factors. Missing from the literature is an exploration of how providers understand these health inequities in pediatric kidney care. To better understand this phenomenon, this study aimed to understand pediatric dialysis and transplant social workers’ explanations of existing disparities for Black children in the transplant process.

Methods: Semi-structured interviews were conducted with 16 pediatric dialysis and transplant social workers recruited from across the US through professional listservs and direct mailing to medical directors of pediatric nephrology programs. The sample was largely White (81%) and 100% female with an average of 6. 8 years in the specialty field of nephrology social work. Social workers in the sample represented 7 of the 11 UNOS regions. Using key constructs from ecological systems theory and critical race theory, thematic analysis was utilized to code and analyze the interview transcripts.

Results: Four primary themes emerged to explain racial disparities for Black children in the kidney transplant process: lack of resources, family composition, distrust, and systemic racism. The barriers to transplant that Black children face are not limited to the patient-level microsystem as previously described in the literature, but persist across all system layers (micro-, meso-, exo-, macro-, and chronosystem). Specifically, the inability to access adequate health insurance represents an exosystem level problem, but lack of transportation and inflexible employment present microsystem level barriers for parents trying to meet transplant evaluation requirements for their Black child. Black children with single parents and multiple siblings face practical microsystem level barriers to transplant, but mesosystem level providers with biased ideas of the ideal transplant candidate also present barriers to transplant access. Providers view distrust as a microsystem level attribute that prevents a smooth transplant evaluation process without acknowledging the chronosystem level historical medical harms and medical racism that inform that distrust. Finally, social workers named systemic racism as a barrier that transcends all levels of the ecological system, from microaggressions to provider bias to race “corrections” in eGFR calculations to White supremacy values to the legacy of slavery.

Conclusions and Implications: The resulting themes raise concern that the current transplant selection process reinforces structural racism in healthcare for Black children. These results diverge from previous studies in acknowledging that explanations for existing disparities fall not on the individual patient but on the healthcare system itself. Social workers recognize that protecting the donor kidney resource is important but identify that the current gatekeeping process contributes to inequities. Further research is recommended to quantify barriers for Black children and to develop intervention strategies.