Neurodevelopment and Autism in South Asia: Treatment and Evidence (NAMASTE)

Summary: Dimagi will work with Sangath to develop an app used in a home-based counseling intervention for parents of children with autism, in a newly launched program titled NAMASTE, funded by the NIHR, UK. Autism spectrum disorder is a developmental disability whose common features can include challenges with social communication and interaction among other health challenges. In South Asia, there are limited community–based services that provide early detection and access to evidence-based interventions for young children with autism. Additionally, public systems have a negligible pool of skilled specialist providers to deliver services. Dimagi’s application will be used by non-specialist providers– Accredited Social Health Activists (ASHAs)– to conduct counseling sessions for parents with autistic children.

The project is funded by the NIHR, UK (project ref. No NIHR134702) using UK aid from the UK government.

The NAMASTE project is a part of a multi-country implementation and research program in India, Sri Lanka and Nepal, funded by the NIHR, UK. The project will implement and evaluate a novel integrated detection and care pathway for young children with autism and their families.  The intervention will be delivered by non-specialist health workers, and in India these non-specialist providers (NSPs) will use a CommCare mobile application designed by Dimagi to augment their intervention delivery. The project will also include a large training programme for clinicians and non-specialist providers to grow much needed research and clinical capacity in the field of neurodevelopmental disabilities in South Asia. Previous iterations of this program have included the Communication-Centered parent-mediated treatment for Autism spectrum disorder in South Asia (COMPASS) program by Sangath, and the Pre-school Autism Communication Trial (PACT) program by the University of Manchester in the UK, who are the leads of this implementation.

NAMASTE is a collaboration between researchers at the University of Manchester’s Social Development Research Group, SANGATH, AutismCare Nepal Society, and the Sri Lanka College of Pediatricians, with partner organizations including Harvard Medical School, La Trobe University, and King’s College London.  Dimagi is a technology partner for the India arm of the implementation, which will be implemented by Sangath in New Delhi and Goa. 

As the technology partner, Dimagi will build and deploy a CommCare mobile application to be used by NSPs during their counseling sessions with parents of autistic children. These sessions include explaining to parents the key development strategies for their child, video recording play sessions of the parent-child dyad, and providing feedback on the play sessions to the parent. Following the parent counseling sessions, the application will be used by NSPs to review and evaluate counseling sessions for their peers.  If successful, the application can be offered as part of a scalable intervention for NSPs to conduct counseling sessions for parents of autistic children and provide peer supervision. 

The primary functionalities of the application are mentioned below:

• Initial home visit: During the first session, the app will allow the counselor to record basic information about the parents, the child and their specific challenges, the parents attitudes and beliefs about autism, and a discussion of any other particular challenges (apart from social interaction and communication-based challenges) that the child or parents face as a result of the child being on the autistic spectrum. 
• Counseling sessions: The counselor will use the application during sessions to review the strategy discussed during previous session, discuss the current strategy, and facilitate audio and video recording and playback for the play session. 
• Self reflection: After the counseling sessions, the NSPs will be able to listen to their session recording and rate their performance.
• Peer supervision: Recordings of counseling sessions will be shared with the NSP’s peer group and supervisor. The NSP’s supervisor and peers will listen to the session recording and rate their performance.
• Quality improvement: The app will show each NSP a summary of their performance broken down by their self rating, peer rating, supervisor rating and a consensus rating. Time-series data will be available on the mobile application so NSPs can see how their quality of care changes over time. 

Funders note: This research was funded by the NIHR (project ref. No NIHR134702) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK government. NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries (LMICs) is principally funded through UK Aid from the UK government.

You can read more about the project from our partners here: https://sangath.in/namaste/