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Published online by Cambridge University Press: 24 June 2022
Background: Obtaining early intervention services is crucial for improving outcomes in children with neurodevelopmental disorders (NDDs) such as Autism or Attention Deficit/Hyperactivity Disorder. Identifying barriers in accessing services in the healthcare system is necessary to optimize the Patient and Family-Centered Care approach. Methods: Parents of children with an NDD co-occurring with attention deficits were recruited from the Neurodevelopmental Attention Clinic at the Alberta Children’s Hospital. Parents completed a semi-structured interview and the Barriers to Accessing Services (BAS) questionnaire. Results: Nine families participated representing 10 children. Interviews were evenly spread between biological mothers and fathers. All children had attention deficits; 4 children were also diagnosed with Autism and 5 with “other” neurologic conditions. The two barriers most identified by families (67%) through the BAS questionnaire were “Didn’t know where to find help” and “Steps to seek help are too overwhelming”, consistent with information obtained in the interview. Conclusions: Children with an NDD and attention deficits often have complex medical needs. Parents have identified challenges initiating, and navigating the many steps involved to secure services. We will collect information from more families to determine how services for children with complex medical needs can become more accessible.