Co-designing a community engagement toolkit to raise awareness of screening and care for neurodevelopmental delays and disabilities in India, Nepal, and Sri Lanka

Background

South Asia has the highest prevalence of neurodevelopmental delays and disabilities (NDDs) globally, with 95% of children with Autism Spectrum Disorder living in this region. Early detection of NDDs can bridge care gaps and improve family understanding and adjustment, maximising a child’s developmental potential. However, low awareness, stigma, and structural barriers delay detection, even where interventions might be accessible. There is also limited research documenting caregivers' perspectives on improving their caregiving journeys.

Objective

This study aimed to develop a ‘Community Engagement Toolkit’ using participatory research with a range of stakeholders to raise community awareness of NDDs, improve timely access to evidence-based information for families, and enhance caregivers' engagement with a community-based detection and care pathway in India, Sri Lanka, and Nepal.

Methods

A total of 185 participants, including caregivers (n=94), non-specialist health workers (n=68), specialist service providers (n=14), and autistic adults (n=9), participated in interviews and co-design workshops. Community Advisory Boards in three countries guided the toolkit’s development.

Results

Findings revealed key time points in typical caregiving journeys where access to practical information is crucial. Barriers to early detection included a lack of awareness of developmental milestones, unclear care pathways, and misinformation. Participants emphasised the need for specific, practical guidance for caregivers throughout their journey to track early development, seek help, and enrol in interventions.

Conclusion

The Community Engagement Toolkit comprises nine tools, including posters, videos, and leaflets, to support caregivers, distributed by trained Non-Specialist Health Workers to improve NDD detection and care.