Barriers and Facilitators to Implementing a Caregiver-Coaching Early Autism Spectrum Disorder Intervention in South Africa

Background: Early detection and early intervention for autism spectrum disorder (ASD) can improve child outcomes and reduce long-term costs. In Sub-Saharan Africa, access to early ASD intervention is however extremely limited. The United Nations Sustainable Development Goals include an overt shift in health system focus from “surviving” to “thriving” in an effort to address morbidity associated with developmental disabilities, including ASD. Efforts to adapt and implement evidence-based early ASD interventions are therefore increasing on the African continent. To date, no implementation studies have been conducted for caregiver-coaching early ASD interventions in Sub-Saharan Africa, and little is known about barriers and facilitators to implement and sustain such interventions.

Objectives: The objective of this study was to explore barriers and facilitators to implement and sustain 12 sessions of an Early Start Denver Model (ESDM) informed caregiver-coaching intervention, delivered by non-specialists, and tailored for the South African context.

Methods: Key informant interviews were conducted with nine South African stakeholders involved in the implementation of the caregiver-coaching intervention during the pre-pilot phase of a study (3 certified ESDM therapists, 2 Non-specialists, 2 Non-specialist school supervisors, 2 caregivers of young children with ASD). Individual in-depth interviews were semi-structured and conducted in person. Interview questions were informed by a similar multi-stakeholder qualitative process evaluation (Curran et al., 2012). Data were transcribed verbatim and thematically analysed, with line-by-line analyses leading to the development and refinement of themes and subthemes.

Results: Consistent themes emerged from key informants. Implementation facilitators included non-specialist baseline knowledge of ASD, and the skills gained over time from ongoing supervision. In addition, implementation facilitators related to the coaching experiences included the in-session coaching structure, strong team relationships, clear illustration of intervention skills from video-based materials, and intervention skill mastery by both the non-specialists and caregivers. Implementation barriers included the complexity of intervention concepts, and misalignment of non-specialist training with a caregiver-coaching approach. Implementation logistical barriers included time constraints, and limited access to physical resources such as coaching space, computers and internet connectivity, and mismatch of intervention video material content with the South African context. Structural barriers to sustain the intervention included poverty, unreliable transportation, and unemployment. Facilitators to sustain the intervention included significant improvement in child symptoms, caregiver buy-in to the coaching approach, and increased caregiver competence. Structural factors that will sustain the intervention include ongoing supervision as well as time and financial investment from the school system where non-specialists delivering the intervention are employed.

Conclusions: This data provides preliminary information on barriers and facilitators to implement and sustain a caregiver-coaching early ASD intervention in South Africa. The results will inform tailoring of the intervention training and supervision approach for a larger pilot study. Positive child and caregiver outcomes could be offset by larger contextual and system-level issues, such as poverty and a need for ongoing support and supervision.