Barriers to Care for Children with Cerebral Palsy in the Rural State of Maine: A Mixed-Methods Study

Authors

Rayne L. Whitten, Tufts University School of Medicine, Maine TrackFollow
Anya K. Cutler, MaineHealth Institute for Research, Center for Interdisciplinary Population and Health ResearchFollow
Alexa K. Craig, Division of Pediatric Neurology, Barbara Bush Children’s Hospital at Maine Medical CenterFollow

Submission Type

Original Research

Abstract

Introduction: Guidelines on orthopedic hip surveillance in children with cerebral palsy have been published to minimize the effects of cerebral palsy and maximize quality of life. Researchers aimed to identify barriers to cerebral palsy care and to assess adherence to national hip-surveillance guidelines among a small subset of children with cerebral palsy who live in a rural state.

Methods: Parents of children with cerebral palsy were interviewed, and thematic analyses were performed on the recorded transcripts. Patient-specific data about imaging and demographics were manually extracted from the electronic health record to perform a mixed-methods analysis.

Results: Twenty-one parents were interviewed, and 4 themes related to barriers to care for cerebral palsy were identified: inadequate local services, communication issues, time burdens, and financial difficulties. Routine surveillance hip x-rays were indicated for 17/21 children; however, 12/17 (71%) did not obtain imaging. In this small group of children with cerebral palsy, inadequate hip surveillance was associated with greater distance to care, lower household education and income, more severe functional limitations, and rurality.

Discussion: Many children with cerebral palsy in Maine have not received optimized orthopedic hip surveillance, and issues related to rurality are major barriers identified by parents.

Conclusions: Multiple barriers exist that inhibit the ability of families to access recommended orthopedic care for family members with cerebral palsy in the rural state of Maine.

Recommended Citation

Whitten, Rayne L.; Cutler, Anya K.; and Craig, Alexa K. (2024) "Barriers to Care for Children with Cerebral Palsy in the Rural State of Maine: A Mixed-Methods Study," Journal of Maine Medical Center: Vol. 6 : Iss. 1 , Article 6.
Available at: https://doi.org/10.46804/2641-2225.1169