Parent Perspectives on Barriers and Facilitators to Optimal Healthcare and Medical Screenings for Children With Down Syndrome in South Carolina

Children with Down syndrome (DS) often have co-occurring conditions affecting vision, hearing, sleeping, and more. Screenings, as recommended by the American Academy of Pediatrics (AAP), can help prevent secondary disability, and allow children to thrive. Studies have evaluated the receipt of recommended screenings, but barriers and facilitators surrounding access to screenings and care have not been described. Parents of 24 children with DS in SC were recruited through schools and family support groups. One-hour long interviews were conducted in English and Spanish. Information was collected on health, healthcare quality, respiratory concerns, pandemic effects, access to care, and knowledge about AAP guidelines on health supervision of children with Down syndrome. Data were coded to identify themes describing facilitators and barriers to care. All children represented had co-occurring conditions. Families described challenges to achieving appropriate care coordination and stress associated with healthcare navigation. Facilitators to screening described included, but were not limited to, insurance, personal connections, primary care and allied health professionals, family support groups and electronic health communication. Barriers included, but were not limited to, ineffective care coordination, insurance navigation, healthcare provider shortages, ableism, pandemic-related issues, and language barriers. Parents also provided suggestions to improve screenings and access to care. This information collected can be used to make healthcare and screenings more family-centered and effective for children with Down syndrome