(806) In Our Own Words: The Experiences of Caregivers of Black Children in the PICU

Introduction: Systemic racism in healthcare significantly impacts Black patients and caregivers, leading to disparities in access, treatment, and outcomes. Black patients and families face biases, unequal treatment, and a lack of cultural competence from healthcare providers, resulting in mistrust and reluctance to seek care. Few studies have explored racism and its impact on families in pediatric critical care. We aimed to explore the experiences of families of Black patients in the pediatric intensive care unit (PICU) and to learn how their encounters with microaggressions, discrimination, and/or differential treatment based on race might affect patient-provider relationships.

Methods: This was a single-center qualitative study in a large, quaternary, urban PICU. Using a constructivist approach, in-depth, face-to-face, semi-structured interviews were conducted with parents/caregivers of admitted PICU patients who identify as Black. Using thematic analysis and constant comparative approach, data was coded using inductive and deductive coding, clustered categorically, and categorized into themes.

Results: A total of 13 participants were interviewed (11 [85%] mothers, 2 [15%] fathers). Interviews averaged 25 minutes. The major themes identified were: microaggressions in the PICU, lack of Black healthcare providers, parental guilt, and resources/support systems in the PICU. Although participants reported the quality of care from physicians didn’t change based on race, many parents voiced a desire to have more doctors and nurses that "look like them” saying, “I think I would feel more comfortable with a black nurse, just because they know our culture” and “I feel like they [Black doctors] understand you better in a way or see where you're coming from.” Caregivers did site visible images promoting diversity (photos, signs) as important aspects of inclusion.

Conclusions: Caregivers of critically ill Black children in the PICU express unique experiences of systemic racism, are affected by microaggressions, and value diverse representation amongst the care team. With rich, detailed insight into the challenges and biases that Black patients and families face, which often go unrecognized in quantitative data, this study can guide future tools to create a more inclusive and equitable environment.