780 Discussion II
Unit 2 Discussion: Robert’s Understanding of End Stage Renal Disease and the Issue of Mistrust
Michael Moates, Ed.D.
Robert’s experience with end stage renal disease provides important insight into how historical and systemic inequities continue to shape African American patients and their perceptions of care. His narrative highlights both a personal and a community level mistrust toward the medical establishment, influenced by lived experiences and intergenerational trauma.
Roberts Understanding and Beliefs
Robert demonstrates a clear understanding of his illness. He recognizes that dialysis is not a cure but a life sustaining treatment that allows him to continue living while he waits for a transplant. At the same time, his remarks reveal deep frustration and fatigue related to long term dialysis. He associates his prolonged time on the transplant waiting list with racial inequities, noting that he has seen White patients receive kidneys while Black patients remain on dialysis for years.
His belief is consistent with research that shows African American patients face longer wait times for kidney transplant even after accounting for social determinants of health and clinical factors (Ng et al., 2020). Roberts reference to research suggests that his skepticism is not random. Instead, it is grounded in data and in a broader social context.
Mistrust among African Americans toward health care institutions is also rooted in historical abuses such as the Public Health Service Syphilis Study at Tuskegee, in which treatment was intentionally withheld from Black men without their informed consent. This event produced long lasting trauma and contributed to ongoing skepticism toward medical research and clinical care (Centers for Disease Control and Prevention [CDC], 2024).
Provider Assumptions and Bias
From Roberts perspective, providers assume that African American patients are less likely to be adherent to treatment and therefore less suitable candidates for kidney transplant. This perceived belief is reflected in his concern that staff may view him as a burden when he calls for updates on his transplant status. These concerns align with the literature on implicit bias in health professions education and practice, where subtle attitudes can shape how clinicians communicate, refer, and advocate for patients (O Sullivan et al., 2023).
Providers may also assume that standard information about dialysis and transplant is sufficient for all patients. In reality, patients like Robert bring a history of community level marginalization and mistrust into the clinical encounter. When these experiences are not acknowledged, patients can feel dismissed or unseen, even when providers believe they are following clinical guidelines.
Culturally responsive care requires more than simply presenting options. It involves recognizing structural barriers, inviting patients to share their concerns, validating the impact of racism on health, and working collaboratively to build trust over time.
Trust, Mistrust, and the Role of Research
Robert clearly links his mistrust to both history and current statistics. He notes that research shows Black patients wait longer for kidneys. This is supported by studies demonstrating that African American patients with end stage renal disease are less likely to be wait listed for transplant and experience lower rates of transplantation compared to White patients, even after controlling for multiple risk factors (Ng et al., 2020).
When Robert cites research, he is signaling to his provider that he is informed and expects his care team to be informed as well. For trust to grow, providers need to show that they are aware of these disparities, take them seriously, and are actively working to reduce their impact on individual patients.
Community and Research Resources to Support Patients Like Robert
For a patient like Robert, connection to community based and research informed resources can make a significant difference in both outcomes and trust. Examples of helpful resources include the following.
First, the National Kidney Foundation offers patient education, support groups, and advocacy programs that specifically address disparities in kidney disease and transplant. These programs can connect Robert to peers who share similar experiences and provide guidance on navigating the transplant system (National Kidney Foundation, n.d.).
Second, the Office of Minority Health within the United States Department of Health and Human Services focuses on improving health equity and supports initiatives that promote culturally competent care. Resources from this office can help providers and organizations design services that better meet the needs of African American communities (United States Department of Health and Human Services [HHS], 2025).
Third, local faith based organizations and community health ministries often host screening events, health education sessions, and support groups in trusted community spaces. For Robert, working with trusted community leaders or patient navigators could help bridge the gap between his experiences of mistrust and the complex medical system that manages dialysis and transplant.
By engaging these resources, Robert could receive more consistent education, psychosocial support, and advocacy. His care team could also collaborate with community partners to address barriers related to transportation, insurance, and communication.
References
Centers for Disease Control and Prevention. (2024). U S Public Health Service Syphilis Study at Tuskegee. https://www.cdc.gov/tuskegee/about/index.html
National Kidney Foundation. (n.d.). Health disparities kidney disease and transplantation. https://www.kidney.org/take-action/advocate/legislative-priorities/health-disparities
Ng, Y. H., Pankratz, V. S., Leyva, Y., Ford, C. G., Pleis, J. R., Kendall, K., Croswell, E., Dew, M. A., Shapiro, R., Switzer, G. E., Unruh, M. L., and Myaskovsky, L. (2020). Does racial disparity in kidney transplant waitlisting persist after accounting for social determinants of health Question mark Transplantation, 104(7), 1445 to 1455. https://doi.org/10.1097/TP.0000000000003002
O Sullivan, L., Kagabo, W., Prasad, N., Laporte, D., and Aiyer, A. (2023). Racial and ethnic bias in medical school clinical grading A review. Journal of Surgical Education, 80(6), 806 to 816. https://doi.org/10.1016/j.jsurg.2023.03.004
United States Department of Health and Human Services. (2025). Office of Minority Health Advancing health equity. https://minorityhealth.hhs.gov