Supporting Children with Autism Spectrum Disorder (ASD) on the Day of Surgery: A Balancing Act

Background: Children with autism spectrum disorder (ASD) appear to be especially vulnerable to distress around the time of surgery and managing distress can be particularly challenging for both parents and healthcare providers to manage (e.g., Bultas et al., 2012). More research is needed to better understand the surgery-related experiences of children with ASD, and to identify practices for ensuring that services are responsive to the unique needs of this growing population of healthcare service users.  

Objectives: To gather the perspectives of parents and healthcare providers who have been directly involved with children with ASD undergoing surgery, and gain deeper insight into the surgery-related experiences of children with ASD, their families, and healthcare providers.  

Methods: Purposive sampling was used to recruit 7 nurses and 8 physicians (surgeons & anesthetists) with Day Surgery experience with children with ASD, as well as 8 parents of children with ASD who had undergone Day Surgery. Participants engaged in semi-structured interviews that focused on (1) how perioperative distress presents in ASD, and consequences of such distress, (2) management approaches to preparing or supporting children with ASD, (3) how surgical services could be altered to better serve children with ASD and their families, and (4) barriers and facilitators to improving Interpretive description (Thorne, 2008) was the qualitative framework; themes were identified in the transcripts. Strategies such as constant comparison, peer debriefing, stakeholder meetings, and consulting expert readers were used to establish the trustworthiness and credibility of the findings. 

Results: Three main themes were identified, in addition to an overarching metaphor of the child, family and health providers experience during the surgical course as a “delicate balancing act”. The first theme: “Finding your footing” described how child, parent, and healthcare provider factors (e.g., anxiety, tolerance of uncertainty, and self-efficacy) set the foundation for surgery-related experiences; “Keeping each other steady” highlighted how interpersonal dynamics among children with ASD, their parents, and healthcare providers (e.g., working alliance) further shape the surgical experience; “Seeing straight ahead” captured how systemic factors (e.g., hospital environment and policies) complicate, as well as provide opportunities for the delivery of surgical care to children with ASD and their families.. A six-minute video animation was built to provide a visual representation and facilitate dissemination of these findings. 

Conclusions: Parents and HCPs provided a nuanced and multi-faceted understanding of how individual, interpersonal, and systematic factors interact and shape the surgery-related experiences of children with ASD, their families, and healthcare providers. Findings underscored the complexities associated with trying to keep children with ASD, their parents, and healthcare providers balanced throughout the surgical course, while also shedding light on opportunities for interventions and clinically feasible practices that may help families and parents to successfully navigate this delicate balancing act.