Strengthening Equitable Access to Care and Support for Children with Cerebral Palsy and Their Caregivers

Abstract

Cerebral palsy is one of the most prevalent groups of motor disorders affecting children and adults across the world. As increasingly more children with cerebral palsy are living longer into adulthood, it is ever more crucial to ensure access to timely and needed early intervention from the onset of diagnosis, on a continuum, to optimize medical, developmental, socio-emotional, and academic outcomes for these children over time. The American Academy of Pediatrics (AAP), in collaboration with the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), substantially revised the clinical practice guidelines for cerebral palsy in 2022, after their prior publication of the guidelines in 2006. The revised guidelines account for a range of considerations that are in line with the biopsychosocial, risk and resilience, and family-centered care models as well as promote a more strengths-based approach to care. Furthermore, there is increased emphasis in the guidelines on promoting equitable access to care as part of contributing towards health equity for all children with cerebral palsy. In addition, the 2022 guidelines clearly present recommendations for earlier diagnosis of cerebral palsy, potentially as early as infancy, as the basis for activating access to early intervention services for children that can bolster their neuroplasticity and global development from an earlier age onward. We consolidate the existing literature on caregiver perceptions, beliefs and concerns surrounding earlier diagnosis of cerebral palsy and connect them to the recommendations in the revised guidelines. We also delineate several considerations surrounding education for healthcare providers and caregivers of children in navigating the chronicity of cerebral palsy in both community and healthcare contexts. There is a scant amount of literature on cerebral palsy across traditional and nontraditional sources of media in published studies, which we also review. Lastly, we present a wealth of recommendations for further research and practice that account for the revised 2022 guidelines, caregiver preferences and acceptability of care, and health equity as the bases for strengthening equitable access to care for children with cerebral palsy on a continuum as they transition into adulthood.