NAMASTE

Community-based pathway for early detection and care for neurodevelopmental disabilities.

Duration

2022 - 2027

Location

NCT of Delhi, Goa, India; Godawari municipality, Kathmandu, Nepal; Colombo district, Western Province, Sri Lanka

Investigators

Dr. Gauri Divan and Dr. Jonathan Green

Contact

namastedelhi@sangath.in

Overview

NAMASTE (Neurodevelopment and AutisM in South ASia Treatment and Evidence) aims to develop, implement, and evaluate a novel community-based pathway to support early detection and care for young children with neurodevelopmental disabilities (NDDs), in South Asia, with a focus on autism. It is being implemented by Sangath alongside the University of Manchester, Autism Care Nepal Society, and the Sri Lanka College of Pediatrics.

NAMASTE will use the Social Attention and Communication Surveillance tool developed by La Trobe University in Australia to screen all children for autism and link families to two interventions: the PASS Plus intervention for children who screen positive for autism risk and the group-based Caregiver Skills Training (WHO-CST) for families whose children have other neurodevelopment difficulties.

The pathway components are adapted based on contextual findings so they can be delivered by non-specialist providers under specialist supervision in these locations.

Rationale

In South Asia, there are limited services to support early detection and care for young children with neurodevelopmental disabilities (NDDs) and public systems have a small pool of specialists who can deliver services. NAMASTE aims to address these problems through its innovations:

Non-Specialist Workforce: Train relevant community-based workers to conduct screening of children and provide intervention services.
Detection and Early Intervention: Develop a system of universal community-based screening of children and link it with appropriate intervention pathways.
Digitisation: The PASS Plus intervention for autism will be digitized for remote learning and supported with a mobile app to help in its delivery.
Community Engagement: Co-creating context-specific community awareness campaigns to support families to recognise early signs of development delays and engage with community-based services. This will be done with persons with lived experience.
Monitoring and Evaluation: The aim is to evaluate the cost-effectiveness, of this pathway in four different locations to help inform public policy.
Capacity Building: The program has embedded within it capacity-building in the field of neurodevelopmental disabilities.

Progress till date

2022 – 2023

Engagement with local public systems to create collaborations
Co-designing of a community engagement toolkit for neurodevelopmental disabilities in the implementation sites;
Mapping of contextually flexible detection and care pathways across sites;
Detection tools and intervention processes adapted to the local context;
Trained master trainers on the two interventions, PASS Plus and WHO-CST, across sites;
Developing a mobile and web application for delivery, supervision, and case management of PASS Plus;
Preparing for training non-specialist providers on detection tools, and the PASS Plus and WHO-CST interventions

Improving awareness: NAMASTE will support increased awareness and acceptance of neurodevelopmental disabilities, especially autism, in the implementation sites.

Establishing a pathway to care: NAMASTE is designing a unique community-based care pathway for families of young children with neurodevelopmental disabilities in the selected sites.

Delivery by non-specialist workforce: Training and competency measures are being developed and will be evaluated for supporting detection and care services by non-specialist providers

Policy brief development: Contextually specific policy briefs will be developed to support the specific health care systems to enhance existing early detection and intervention services for neurodevelopmental disabilities.