"Well, I think it's institutional racism:" How pediatric dialysis and transplant social workers explain racial disparities for black children in access to kidney transplantation

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Degree type
Doctor of Social Work (DSW)
Graduate group
SP2
Discipline
Social Work
Subject
Health Equity
Nephrology Social Work
Pediatric Kidney Transplantation
Racial Disparities in Healthcare
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author or copyright holder retaining all copyrights in the submitted work
Copyright date
2024
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Author
Kristin L. Stockard
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Abstract

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. This study aimed to understand pediatric dialysis and transplant social workers’ explanations of existing disparities for Black children in the transplant process. Semi-structured interviews were conducted with 16 pediatric dialysis and transplant social workers recruited from across the US through professional listservs and direct mailings. The sample was largely White (81%) and 100% female with an average of 6. 8 years in the specialty field of nephrology social work. Using an integrated conceptual framework of the ecological systems theory and critical race theory (CRT), thematic analysis was used to code and analyze the interviews, resulting in 4 primary themes: lack of resources, family composition, distrust, and systemic racism. Second order coding was then used to conduct a deeper examination of the theme of systemic racism. The barriers to transplant 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 a “lack of resources” at the exosystem level. For “family composition,” Black children with single parents and multiple siblings face practical microsystem level barriers to transplant and mesosystem level provider bias. Providers view “distrust” as a microsystem level attribute that prevents a smooth transplant evaluation process, but social workers acknowledged 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. From the second order coding process, three new themes emerged to explain “systemic racism” in the context of pediatric kidney transplantation: 1) racism across all levels of the healthcare system, 2) institutional racism, and 3) gatekeeping. The resulting themes raise concern that the transplant selection process may reinforce 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. The CRT construct of “centering the margins” provides some guidance for addressing these disparities. The unique role of social work in ESKD care paired with our professional obligation to social justice suggest that pediatric dialysis and transplant social workers are ideally situated to take a prominent position in dismantling racial disparities for Black children in kidney transplant access. Future research is recommended to quantify barriers for Black children and to develop intervention strategies.

Advisor
Cadet, Tamara
Date of degree
2024-05-18
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