Parents’ Experiences and Information Needs in the Management of Their Child With Intellectual Developmental Disorders in Canadian Emergency Departments: A Qualitative Descriptive Study

Children with intellectual developmental disorders (IDDs) are frequent users of emergency department (ED) services. Incorporating parents' experiences and addressing information gaps is crucial to supporting healthcare utilization. This study examined the experiences and information needs of parents managing their child with an IDD in the ED. Semi-structured individual interviews were conducted with 10 parents; data was analyzed thematically. Results draw attention to the role of parents as key care coordinators and experts in their child's health, often advocating for the needs of their child. Facilitators to positive ED experiences were mutual respect and trust between parents and healthcare providers (HCPs), parental preparedness, and effective communication. Parents rely on each other and trusted sources of information when making decisions and seeking validation. Findings can aid researchers, HCP, families, and change-makers to gain insight into factors that drive parental expectations and care decisions within the ED. Findings can also be used to support the development of targeted knowledge translation strategies supporting both caregivers and HCPs in managing emergency healthcare of children with IDDs.