Racial Disparities in the Provision of Pediatric Psychosocial End-of-Life Services: A Systematic Review

Background: When compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palliative care, especially when looking at psychosocial palliative care services such as those provided by child life specialists, social workers, and pediatric psychologists. Objectives: In an effort to consolidate and synthesize the literature on this topic for psychosocial professionals working with children and families confronting a life-threatening diagnosis, a review was conducted. Design: This work was a systematic review of several academic databases that were searched from January 2000 to December 2020 for studies exploring disparities in pediatric end-of-life services and written in English. Setting/Subjects: This review was conducted in the United States. The search yielded 109 articles, of which 16 were included for review. Measurements: Three psychosocial researchers independently reviewed, critically appraised, and synthesized the results. Results: Emerging themes from the literature (n = 16) include service enrollment, decision making, and communication. Results highlight a lack of research discussing psychosocial variables and the provision of psychosocial services. Despite this gap, authors were able to extract recommendations relevant to psychosocial providers from the medical-heavy literature. Conclusions: Recommendations call for more research specific to possible disparities in psychosocial care as this is vital to support families of all backgrounds who are confronting the difficulties of pediatric loss.