Global Strategies, Local Impact: Testing Scalable Caregiver Interventions for Autism in Low-Resource Health Systems
Indiana University
Summary
Autism spectrum disorder affects 1-2% of children worldwide, yet access to quality care remains limited, especially in underserved communities. Families face systemic barriers such as workforce shortages, high caregiver stress, and a lack of culturally appropriate services. To address these gaps, researchers developed a group-based caregiver training program to improve caregiver well-being and child communication and behavior. Successfully piloted in rural U.S. communities and western Kenya through the AMPATH Program, the intervention showed promising results in reducing caregiver stress and autism severity. Building on this success, a new study will evaluate two delivery models-professionally-led and peer-led-using a rigorous effectiveness-implementation trial. The project applies a reciprocal innovation approach, using insights from Kenya to inform U.S. strategies for scaling community-based autism support. The long-term goal is to reduce disparities in autism care by creating scalable, low-cost, caregiver-driven models. A Community Advisory Panel will guide the research to ensure relevance and impact. This initiative represents a transformative step toward equitable autism services across global and U.S. settings.
Description
Autism spectrum disorder is a common neurodevelopmental disability affecting 1-2% of children worldwide. While early intervention is critical for improving outcomes, access to quality services remains severely limited. Families in low-resource settings, both globally and within the U.S, face systemic barriers including workforce shortages, high caregiver burden, and limited culturally appropriate services. There is a critical need for scalable low-cost interventions to support children with autism and their families in communities where robust systems of care are absent. To address this gap,…
Eligibility
- Age range
- 2–8 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Caregiver is willing to participate * Caregiver speaks either Swahili or English * Child is between 2 and 8 years of age * Child presents with concerns suggestive of autism Exclusion Criteria: * The caregiver declines to participate * The child has significant vision or hearing impairment * The child is not primarily cared for by the enrolled caregiver
Interventions
- BehavioralProfessionally-facilitated groups
A group-based caregiver ASD intervention will be delivered through two distinct implementation strategies led by trained therapists or teachers using a structured 10-week in-person curriculum at the MTRH campus and virtually in the US.
- BehavioralPeer-facilitated groups
A group-based caregiver ASD intervention will be delivered through two distinct implementation strategies led by trained caregivers of children with ASD who deliver the same core curriculum with flexibility in timing and location, provided that all content is completed within four months.
Locations (2)
- University of Virginia (Virtual)Charlottesville, Virginia
- Moi Teaching and Referral HospitalEldoret