P3.O281: "It's a broken system...created by broken people": Using a social justice framework to address inequity in pediatric palliative care.​

Background: Black and Native American populations in the US face a disproportionate burden of pediatric serious illness and receive lower quality serious-illness care. Despite recognition of this issue, few studies have explicitly used a social justice framework to understand experiences of racism in the context of pediatric serious illness. There is an even greater lack of research examining the ways in which racism affects patient care and outcomes in this context.

Methods: Sixteen semi-structured, in-depth interviews were conducted from Oct. 2023-April 2024 with Black and Native American patients and their parents who had experienced pediatric serious illness. Transcripts were deductively coded using an applied social justice framework (restorative, interactional, procedural, distributive, and retributive) and three levels of racism (institutionalized, personally mediated, and internalized). Reflexive thematic analysis was performed to understand shared experiences of (in)justice.

Results: While analysis is ongoing, preliminary themes are global patterns of injustice, the perpetuation of injustice through communication, and the necessity of advocacy to combat this injustice. There have been notably few instances of retributive justice identified thus far and the majority of observations in the social justice domains are examples of injustice. Communication has emerged as a critical factor influencing outcomes, while exclusion and dismissal have been observed as recurrent issues within the examined frameworks. A significant emphasis has been placed on advocacy and self-advocacy, particularly in the forms of taking on additional caregiving and care coordination responsibilities, as key components for navigating injustice.

Conclusion: As one of the first studies to explicitly use a social justice framework alongside Camara Jones’ theoretical framework on the levels of racism experienced in healthcare, this study has the potential to contribute significantly to the development of interventions aimed at addressing disparities in pediatric palliative care and to the broader field of health equity and social justice research.