A program of community-based participatory research to improve the surgery-related experiences of children with autism spectrum disorder

Healthcare providers at our institution are interested in identifying ways to improve surgery-related experiences for children with autism spectrum disorder (ASD), their families, and their healthcare providers. We interviewed 23 parents and healthcare providers with direct experience providing surgery-related care to children with ASD. This helped us to get a better understanding of the challenges associated with delivering surgical services to children with ASD, and identify key areas for change that might promote improvements in care delivery. Parents and healthcare providers both expressed a desire for a training program to help healthcare providers in their efforts to provide high quality care to children with ASD and their families. This presentation will describe what we learned from our interviews, and how we used that information to help design the desired healthcare provider training program. We will also describe (1) our plans for sharing this program with healthcare providers, (2) how we plan to test whether it is helpful for healthcare providers, and finally, (3) whether training healthcare providers leads to any benefits for children with ASD and their families. In the end, we hope that our research directly helps to improve the experiences of children with ASD, their families, and healthcare providers around the time of surgery. In addition, we hope that we will build on existing understandings of how to best train healthcare providers. Finally, while the surgical setting represents just one context in which children with ASD and families interface with healthcare services, we expect that our findings will provide insight that will be applicable across healthcare contexts. Thus, we anticipate that this research will inform improvements to the various health care delivery systems that children with ASD and their families interface with.