Tailoring Treatment Targets for Early Autism Intervention in Africa
Condition: Autism Spectrum Disorder
MeSH terms: Autistic Disorder; Autism Spectrum Disorder
Study type: Interventional

Summary: 
      Naturalistic Developmental Behavioral Interventions (NDBIs), an evidence-based early autism
      spectrum disorder (ASD) intervention approach, target key behaviors that help language
      development. While efforts to use NDBIs are increasing worldwide, important gaps in our
      knowledge remain on whether the behaviors targeted by NDBIs are cross-culturally valid. This
      study in South Africa, a multi-cultural setting, will provide critical information on NDBI
      treatment targets and a novel digital outcome measure of treatment response.

      COVID-19 adaptations: We aim to develop and implement telehealth NDBI coaching and utilize a
      mixed methods approach to gather implementation and preliminary effectiveness data on the
      telehealth intervention.
    

Detailed description: 
      COVID-19 has significantly impacted autism spectrum disorder (ASD) clinical research and
      disrupted access to intervention services for children and families globally. In this ongoing
      study in Cape Town South Africa, a caregiver coaching Naturalistic Developmental Behavioral
      Intervention (NDBI) for young children with ASD has been adapted for implementation by
      non-specialists and implementation and clinical outcomes are being evaluated. For ongoing
      clinical trials, the University of Cape Town Institutional Review Board (IRB) has encouraged
      researchers to switch to a virtual platform, where possible. Telehealth caregiver coaching is
      cost-effective, increases access to rural and underserved populations, and improves
      understanding of family home and caregiving routines. We aim to develop and implement
      telehealth NDBI coaching and utilize a mixed methods approach and a longitudinal pre-post
      design to gather implementation and preliminary effectiveness data on the telehealth
      intervention.
    

Intervention name(s): Early Start Denver Model (ESDM); Telehealth coaching
Intervention type(s): Behavioral; Behavioral
Intervention description(s): Twelve one hour sessions, skill is introduced by "Help is in your hands" Community ESDM videos. Session skills include specific strategies caregivers can use to increase their child's attention to people and their child's communication; strategies to identify, create and use joint activity routines to engage with and teach their child; in addition to ways to use the ABCs of learning to teach their child new behaviors. "Help is in your hands" Community ESDM materials also provide video examples of other caregivers using the session skill with their child. The early childhood development practitioner then coaches the caregiver in the session skill, in at least two activities. The goal of coaching was to provide enough support for the caregiver to experience success in implementing the new skill with their child. Coaching is followed by caregiver reflection and a discussion of generalization of the new skill across various daily activities, using a daily activities visual aid.; The telehealth coaching intervention was informed by the Community-Early Start Denver Model (C-ESDM) materials. Twelve session-specific visuals with simple-text (for caregivers) and session scripts (for non-specialist coaches) were developed by the research team. Over 12, 1-hour asynchronous caregiver coaching sessions that are delivered by non-specialists, caregivers were coached in strategies to increase child attention to their social world, increase child communication, create and build joint activity routines, and understand and use the ABCs to support the development of new behaviors. The session itself being delivered via phone. Prior to the coaching session staff shared session materials with the family via WhatsApp. Prior to the session the caregiver shared a 6-min video of an interaction with their child. During the session, the caregiver and coach reviewed the video, and the caregiver completed a self-reflection checklist.
Allocation: Non-Randomized
Intervention model: Parallel Assignment
Intervention model description: Note the autism group will be the only group to receive intervention. The typically developing and developmental delay group will receive one baseline assessment, and no intervention. COVID-19 necessitated a pivot from in-person to telehealth coaching.
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: NDBI; Autism