Fidelity of caregiver and non-specialist early autism intervention implementation in South Africa

Abstract

Background: Autism spectrum disorder (ASD), a lifelong neurodevelopmental disorder, is recognized by the World Health Organization as a growing global public health concern (World Health Organization, 2013) and may represent some of the greatest burden of disease in children and adolescents. Although currently there is no known cure for ASD, different levels of recovery are still observed in patients. Early detection and intervention with evidence-based treatment models such as the Early Start Denver Model (ESDM) can improve intellectual ability and adaptive behaviors, and decrease symptom severity and challenging behaviors (Dawson et al, 2010; Rogers et al, 2012; Estes et al., 2015). In addition, early intervention with models such as ESDM can decrease long term costs associated with special education services, sheltered employment and supported living (Cidav et al., 2017). In South Africa a small start has been made on caregiver coaching early autism intervention, where caregivers are taught strategies to enhance their child’s social communication attempts (Franz et al., 2017; Guler et al., 2017). But important question remains as to whether non-specialists can deliver an early autism intervention at fidelity and in doing so impact child social communication and social engagement. Fidelity of intervention delivery is the degree to which programs are implemented as intended by program developers and is important because it is a potential moderator of the effect of the intervention on targeted health outcomes (Carroll et al., 2007; Brownson, Colditz, & Proctor, 2012).

Study Aims: The long-term goal of the study is to advance our understanding of the efficacy of caregiver coaching early autism interventions delivered by non-specialists in low resource settings. The overall aims of this South African study are tracking changes in fidelity of caregiver and non-specialist intervention implementation measured using established ESDM fidelity scales of (a) caregiver implementation of ESDM, and (b) non-specialist caregiver

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coaching techniques during 12 weeks of 1 hour per week P-ESDM coaching in 6 caregiver-child dyads.

Method: The overall study design is a hybrid type 1 effectiveness design. There are twelve 60-minute sessions in total, one hour per week, and all sessions will be video recorded. Each session of non-specialist coaching and caregiver child interaction will be coded at each of the 12 sessions for fidelity of caregiver implementation of ESDM strategies and coaching skills. The data analysis process aims to track changes in the fidelity of caregiver implementation of ESDM and the fidelity of non-specialist caregiver coaching techniques during each of the 12 week of 1 hour per week P-ESDM coaching in 2 caregiver-child dyads. The display fidelity scores visually across session time points, a similar approach used by Vismara (Vismara, Colombi, & Rogers, 2009). In addition, modifications are made to the original plan to adapt local situations to make the intervention more fit to local settings and such modifications are documented using Wiltsey-Stirman framework.

Results: The adaptation process is documented by the Wiltsey-Stirman framework by five categories of modifications on who made the adaptations, what is modified, level of delivery, context of modification and the nature of modification. The fidelity score for each caregiver and coach fidelity rating items are listed and the average fidelity scores for all intervention sessions are also calculated. The worst performing rating items on Caregiver Fidelity Scale are ABC format, joint activity structure and elaboration, quality of dyadic engagement, instructional techniques and application. The worst performing rating items on Coaching Fidelity Scale are greeting and check-in, conversational and reciprocal, reflective, coaching activity 2 and collaborative. There is no significant increasing or decreasing trend of caregiver and coach performances based on average fidelity scores across twelve sessions and

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there are no strong correlation observed between coaching fidelity scores and caregiver fidelity scores.

Conclusion: Training non-specialists and including them as a part of ASD treatment can help to reduce the resources gap by providing accessible and affordable early ASD intervention in lower-resourced settings. Culturally-sensitive adaptations made to the original intervention program are also needed to make the treatment reach its full capacity in a multi-cultural and multi-lingual community like South Africa. There are only two pairs of caregiver, child and non- specialist dyads participated in this pre-pilot study and such lack of sufficient data serves as a major limitation of this study. In subsequent researches, more caregivers and non-specialists shall participate in the study to help with building more systematic adaptation process and generalize the process of reaching intervention fidelity in lower-resourced settings like South Africa. And these types of interventions have the potential to be scaled up in community settings globally and begin to address the needs of young children and families impacted by autism.