P3C074: Centering in the Margins: Addressing Racism in Pediatric Serious Illness

Background: Racial health disparities create a dark reality that casts a shadow upon our healthcare system and access to healthcare within this country. When considering serious illness, collectively, Black and Indigenous patients including children have higher death rates, shorter survival, and increased risk of complications from conditions such as cancer, HIV/AIDS, and chronic liver disease. Historically, Black and Indigenous communities in the United States have been impacted by a legacy of slavery and oppression based on race, including disparate allocation of resources fundamentally required for health and survival. Racism, discrimination and mistrust in the health care system may influence whether Black and Indigenous people seek or receive prevention services for serious illnesses, as well as their likelihood of engaging in treatment, including palliative care. The pediatric and palliative care communities must be prepared to address how disparities impacting communities of color affect the ways in which Black and Indigenous children and youth live with and die from serious illness.

Project Description: Our research group is using a multipronged approach to generate tangible recommendations regarding how the fields of pediatrics and palliative care can address racism and inequities in care to reduce suffering for Black and Indigenous children and families experiencing serious illness. We have assembled an interdisciplinary stakeholder advisory board inclusive of clinicians, researchers, patients, parents, and healthcare advocates who have helped to guide our overall approach to this project. We are currently performing a scoping literature review to characterize what is known about race and racism in pediatric serious illness and pediatric palliative care. Additionally, we are conducting focus groups with Black and Indigenous pediatric patients and families facing serious illness to understand how racism impacts their experience of living with serious illness and the role palliative care can play in addressing this racism as a specific aspect of their suffering.

Discussion: Using evidence generated from the scoping literature review and thematic analysis of focus group data, we will leverage the input of the stakeholder advisory board to author evidence-informed, consensus-based recommendations for addressing issues of race and racism in pediatric palliative care that can be disseminated widely through national organizations as an advocacy tool. Preliminary findings from the literature review and focus group data will be shared during this presentation.

Conclusion: Racism in the healthcare experience of children and families facing serious illness is a critical historic challenge that must be strategically addressed. This project represents a concerted step in the arc towards justice for these children and families and will help to inform how healthcare institutions, clinicians, policymakers, and advocates work towards greater equity for all patients.