22 Families’ Experiences with Autism Service Navigation and Mobile Application-based Support

Abstract

Abstract Background Navigating services following an autism spectrum disorder (ASD) diagnosis is a challenging and lengthy process. Families of children with ASD increasingly experience difficulty locating and accessing services, leading to the inaccessibility of care. These difficulties were further exacerbated by COVID-19 and little is known about families' experience navigating services during the pandemic. Given the complexities of accessing publicly funded developmental services and the lack of a comprehensive platform to navigate available services, prior to the pandemic our research team developed a mobile application, My Autism Passport (MAP), to assist families in identifying publicly available ASD services. Our goal was to determine whether a mobile application would provide families with greater self-efficacy during these challenging times. Objectives The primary objective of our study was to determine the impact of MAP on caregiver self-efficacy. Design/Methods A randomized controlled trial of 34 caregivers of children under 6 years of age who were given a new diagnosis of ASD in the last year were recruited into the study. 17 were randomized to receive MAP. Access to ASD services and parent self-efficacy scores were collected via questionnaires at baseline and then at 6 months from recruitment in both groups. Self-efficacy was measured using the Parent Empowerment and Self-Efficacy Measurement (PEEM). Results Our study consisted of an ethnically diverse group of participants with varying socioeconomic levels. At baseline, participants indicated an overall mean PEEM score of 131.8 (±28.2) in the control arm, and 138.5 (±23.3) in the App arm at the time of diagnosis (p-value 0.6149). At 6 months following ASD diagnosis, the overall score was 123.2 (±35.7) in the control arm, and 137.3 (±33.3) in the App arm (p-value 0.4413). There was a trend towards decreasing feelings of self-efficacy in the control group compared to those with the App who had a stable self-efficacy score. Conclusion Our study indicates that the use of a mobile app to assist service navigation may be helpful for families in self-navigation for autism services. Data collection and analysis are ongoing for one-year post-diagnosis.