Addressing disparities among children with cerebral palsy: Optimizing enablement, functioning, and participation

Abstract

Purpose: Recognizing health disparities among children with cerebral palsy (CP) is necessary for understanding potential risk factors for CP and for implementing early and effective preventative and intervention treatments. However, there is currently little and conflicting evidence regarding the direct impact of contextual factors such as socioeconomic status (SES) for children with CP in the United States. These contextual factors include the complex social determinants of health on prematurity, comprehensive informed obstetric management for minority and vulnerable populations, and cumulative adversity disproportionately experienced by children, by gender, minority status, immigration, poverty, and structural racism.

Methods: This study presents results from a review of health disparities among children with CP, using registry and population surveillance data from Australia, Canada, Scandinavia, the United Kingdom, Ireland, Turkey, and the United States.

Results: The review confirmed that there are significant health disparities among children with CP, both in terms of prevalence and severity, based on factors such as SES, neighborhood disadvantage, maternal education, gender, and minority status.

Conclusion: Strategies need to be implemented in the United States to promote enablement and functioning among children with CP who face additional health disparities. This requires a greater understanding of population groups at increased risk, comprehensive assessment and care for young children with motor delays, and systematic population counts of children and adults with CP using registries and systems of neurodevelopmental surveillance across health, education, and community rehabilitation. These efforts also require sensitivity to structural and persistent racism, stigma, trauma-informed care, and culturally sensitive community engagement. Additional efforts are also required to improve outcomes over the life course for individuals living a life with CP from a framework of enablement, self-direction, equity and social justice.

Keywords: Cerebral palsy; early detection; enablement; functioning; health disparities; registries.