Outcomes among caregivers of toddlers with ASD concerns following implementation of Screen-Refer-Treat, a novel service delivery model for early ASD detection and intervention

Abstract

The American Academy of Pediatrics recommends early ASD screening in primary care settings (Hyman et al., 2020) and evidence demonstrates that specialized early interventions lead to more optimal outcomes among children with ASD (Landa, 2018). However, rates of early ASD screening in the community remain low and many families face barriers to getting an ASD diagnostic evaluation and access to specialized intervention services. As such, caregivers report that the pre-diagnosis period is marked by uncertainty and overwhelming worry (Mulligan, MacCulloch, Good, & Nicholas, 2012), and previous research suggests a link between caregiver wellbeing and the quality of care services for children with ASD (Parker & Killian, 2020). To address these challenges, ongoing implementation efforts are aimed at increasing ASD screening and evidence-based early interventions in the community (Broder Fingert et al., 2019). Aligned with these efforts, a novel service delivery model, Screen-Refer-Treat (SRT; Ibañez et al, 2019), was developed and implmemented in 4 Washington State counties to increase use of the M-CHAT-R/F (Robins et al., 2014) at 18-month well-child primary care visits and expedite delivery of ASD early intervention (i.e., Reciprocal Imitation Training; Ingersoll, 2010) within Part C early intervention (EI) programs for toddlers who screen at-risk for ASD, but who have not yet received a formal ASD diagnostic evaluation. To implement SRT, primary care providers and EI providers received training on SRT components. Two separate cohorts of families were recruited - one before providers received SRT training and one following SRT training - to assess family outcomes before and after SRT was implemented. Families either had a child with ASD concerns (ASD-C), non-ASD developmental concerns (e.g., motor delays, DEV-C), or no developmental concerns (NO-C). The present study compared caregiver quality of life, parenting stress, parenting self-efficacy, and family-centered care between ASD-C, DEV-C, and NO-C caregivers who were either exposed (i.e., post-SRT cohort) or not exposed to SRT (i.e., pre-SRT cohort). Parenting self-efficacy and family-centered care did not differ between the three groups of caregivers or between the pre-SRT and post-SRT cohorts. Consistent with previous work (DesChamps, Ibañez, Edmunds, Dick, & Stone, 2020), results revealed that ASD-C caregivers in both cohorts reported higher levels of parenting stress compared to DEV-C and NO-C caregivers. Within the pre-SRT cohort, ASD-C caregivers reported lower quality of life compared to DEV-C and NO-C caregivers. However, quality of life was higher among ASD-C caregivers in the post-SRT cohort such that there was no longer a difference in quality of life among ASD-C, DEV-C, and NO-C caregivers following SRT implementation. This study provides preliminary evidence that implementation of the SRT service delivery model may have a positive impact on the wellbeing of caregivers of young children with ASD concerns. Results and limitations are further discussed.