Perspectives of Parents/Legal Guardians of Children With Down Syndrome Requiring Anesthesia: Concerns and Sources of Information.

This descriptive exploratory study sought to gain insight about where caregivers of children with Down syndrome find information regarding anesthesia and the experiences of these caregivers when their child had to receive an anesthetic. We hypothesized that the Internet and social media were major sources of information. We recruited parents/caregivers via Down syndrome organizational websites and social media. A total of 515 participants completed a 24-question survey. Descriptive analysis and content analysis were used to analyze the data. Nearly all participants (96%) indicated their child had received an anesthetic. Reportedly, 41.2% had never searched the Internet about anesthesia. Responses indicated that caregivers obtained information mostly from Facebook groups and local websites and groups. Respondents believed the information was helpful (88.2%) but considered it to be only somewhat trustworthy (73.3%). Most (82%) indicated they would prefer a face-to-face conversation with the anesthesia provider. Among participants, 45% reported having a positive experience with anesthesia, 25% reported a negative experience, and 30% responded neither. Negative experiences involved children who had symptoms of emergence delirium and regression or when the caregiver perceived there were unexpected complications. These results are intended to be used to develop a checklist for caregivers when speaking to anesthesia providers.