FINDING BALANCE: IDENTIFYING WAYS TO IMPROVE THE DELIVERY OF SURGICAL CARE TO CHILDREN WITH AUTISM SPECTRUM DISORDER

Abstract

Children with autism spectrum disorder (hereafter, autism) interact with healthcare services more often than their peers, yet have poorer healthcare experiences and more unmet healthcare needs. Systematic research-based efforts are needed to improve the healthcare experiences of children with autism. This mixed-methods program of participatory action research was aimed at improving the surgical experiences of children with autism, their families, and healthcare providers (HCPs). Manuscript 1 details a qualitative study of the surgery-related experiences of children with autism. Interpretive description was used to explore the perspectives of parents and HCPs with direct experience caring for children with autism around the time of surgery. Findings provided a nuanced understanding of the experiential context within which efforts aimed at improving the surgery-related experiences of children with autism must be implemented, and shed light on potential intervention targets. Qualitative study findings enriched by stakeholder consultations led to the framing of the target for improvement as the delivery of high-quality family-centred care. Manuscript 2 describes how the Behaviour Change Wheel, a systematic and theory-driven process, was used with stakeholder engagement to develop an intervention aimed at improving the delivery of family-centred care to children with autism around the time of surgery (i.e., Building Alliances for Autism Needs in Clinical Encounters; BALANCE). Results described in Manuscript 2 also show that implementation of BALANCE in the perioperative service of a tertiary children’s hospital was associated with positive changes in behavioural determinants (i.e., capability, opportunity, and motivation) hypothesized to underlie variations in family-centred care. Manuscript 3 describes evidence supporting the feasibility and acceptability of BALANCE implementation, and shows that BALANCE was associated with positive changes in families’ and HCPs’ reports of the delivery of family-centred care. Overall, this dissertation addresses research gaps concerning the surgical care of children with autism and interventions to improve the delivery of healthcare to these children. This dissertation also contributes to the literature on collaborative approaches to healthcare research, and methods for the development and design of interventions that aim to improve healthcare delivery.