Barriers to Preventive Care and Medical Screenings Among Children With Down Syndrome in South Carolina as Described by Parents

Introduction: Studies have evaluated the receipt of preventive care among children with Down syndrome, but barriers surrounding access to screenings and health care in general have not been well described among this population across the United States. This study describes parental perspectives on barriers to screenings and health care. Method: Twenty-four semistructured interviews with parents of children with Down syndrome were administered to families across South Carolina in 2022. Thematic analysis was used to identify salient themes related to barriers to care. Results: Barriers to preventive care identified by families included ineffective care coordination, insurance-related concerns, health care provider access shortages, and language barriers. Discussion: Findings can be used to address problems with major aspects of medical care and to make care more family-centered and accessible for children with Down syndrome.