Perspectives of Parents/Legal Guardians of Children with Down Syndrome Requiring Anesthesia: Concerns and Sources of Information
The purpose of this study was to identify sources of anesthesia information and personal concerns with anesthesia of parents/ legal guardians of children with Down syndrome. This study gathered data from 512 participants involving 4 areas: 1) demographic characteristics of caregivers of children with Down Syndrome, 2) caregiver information resources commonly utilized to gain information regarding anesthesia and children with Down syndrome, 3) Biggest concerns with anesthesia that parents and legal guardians expressed, 4) and personal experiences with anesthesia.
Data analysis demonstrated that caregivers of children with Down syndrome use the internet and social media sites like Facebook for information. However, the respondents said they would prefer a face-to-face conversation with the anesthesia provider and, if possible, would prefer that their anesthesia provider have a child with Down syndrome. The biggest concerns with anesthesia involved airway management/breathing, neck instability, long-term cognitive effects/ regression, waking up and detoxification. This information will now be used to create an evidenced based toolbox of resources to be shared with anesthesia providers, organizations, and social media sites whose members are parents/legal guardians of children with Down syndrome. (.5 Class A CE)