Racism in Pediatric Serious Illness and Palliative Care: A Scoping Review of Qualitative Research

Context

Racial disparities in health outcomes have historically impacted Black and Native American children with serious illness, yet little is known about how racism shapes the healthcare experiences of these families. To improve care experiences for this population, we must understand the myriad of ways that racism may impact their experiences with serious illness.

Objectives

1) To assess the extent to which the experiences of Black and Native American families have been captured in existing serious illness and palliative care literature and 2) explore how experiences of racism uniquely impact this population.

Methods

We conducted a scoping review and qualitative meta-synthesis of peer-reviewed articles from 1980 to 2022 that included Black and/or Native American parents’ or caregivers’ experiences of serious illness care. We abstracted study characteristics, and forms of racism mentioned.

Results

Searches yielded 2762 articles, of which six were reviewed based on inclusion criteria. Three key themes emerged from the literature on the experiences of Black families navigating pediatric serious illness that highlight how parents navigate their future after a serious illness diagnosis; how relationships and support networks change after diagnosis; and the challenges associated with navigating grief and suffering after a diagnosis. Institutionalized racism and interpersonal racism were the most identified forms of racism experienced by Black families. None of the articles identified included Native American families.

Conclusion

Our findings highlight the pressing need for further qualitative research to explore the lived experiences of racially minoritized families—especially studies focusing on the experiences of Native American families.