Funding outcome

Children with medical complexities (CMC) represent a diverse group of children with a wide spectrum of conditions and healthcare needs, including conditions such as cerebral palsy, global development delays and seizure disorders. This group of children is particularly vulnerable because of their reliance on advanced health care supports and technology, the number of services and providers they interact with, and their increased risk of complications requiring emergency healthcare. The Canadian Institute for Health Information published a report in 2020 demonstrating that although CMC make up less than 1% of children in Canada, they account for up to 30% of total healthcare spending and up to 20% of all emergency department (ED) visits. Unplanned ED visits are stressful, especially for CMC as healthcare staff may not have the experience needed to treat their complex and rapidly changing conditions. Our research aims to understand the experiences of parents of CMC when visiting Canadian EDs and to identify and address gaps in knowledge and information. Our study findings will be combined with the latest evidence about best practices for care to co-develop a resource such as an interactive infographic for families. This model of developing resources with families has been tested and used in our research programs over the past decade, and has resulted in the co-development of over 40 health resources for families. Working with national stakeholders and our local parent advisory group helps us ensure the resources we develop are relevant, useful, and easy to understand. The resource we develop from this research will help provide parents and families of CMC with the health information they need and want, as well as information to help manage expectations when visiting an ED. Ultimately, this research can help improve the experiences of vulnerable children and their families in the ED, and help create a more streamlined and responsive visit.