Neurodevelopment and AutisM in South ASia Treatment and Evidence (NAMASTE)

PROJECT OVERVIEW

Background

In South Asia, there are limited community-based services to support the early detection and provision of evidence-based interventions for young children with neurodevelopmental disabilities, especially autism. Adding to this, public systems have to draw from a negligible pool of skilled specialist providers to deliver services. NAMASTE aims to address these two problems in innovative ways.

About the programme

NAMASTE will design, implement and evaluate a flexible detection and care pathway for young children with neurodevelopmental disabilities (NDDs) with a focus on focus on autism in the four identified districts of India, Nepal, and Sri Lanka. The pathway components will be adapted based on contextual findings so they can be delivered by non-specialist providers under specialist supervision in these locations.

NAMASTE builds on a decade-long collaboration between Sangath and the University of Manchester through which the team has carefully adapted, expanded and tested an evidence-based intervention for children with social communication difficulties in the South Asian context. This intervention is called the Parent-mediated Autism Social Communication Intervention for non-Specialists Plus (PASS Plus).

NAMASTE will design a detection-care pathway which will use the Social Attention and Communication Surveillance (SACS) tool developed by La Trobe University in Melbourne, Australia and link this to two interventions: the group-based generic Caregiver Skills Training for families of children with developmental delays or disabilities (CST) which has been developed by the World Health Organization for families whose children do not meet autism risk and the PASS Plus for children who screen positive for autism risk.

LOCATION

India: South-East Delhi district (Delhi), North Goa District (Goa) Nepal: Godawari municipality (Kathmandu) Sri Lanka: Colombo district (Western Province)

PROJECT DURATION

September 2022- September 2027

PROJECT GOAL

Our aim is to address the current gaps where families are struggling to access early detection and care services. To achieve these aims we will be:

Identifying the non-specialist workforce to support both detection and intervention services in all four contexts.

Adapt the SACS screening tool for administration in the four districts and develop a data pathway for detection results to link with the appropriate intervention pathway.

Digitise training and supervision of the PASS Plus intervention which can support non-specialist providers to learn the intervention remotely, using Sangath’s EMPOWER platform and Dimagi’s technology.

Develop a context-specific community awareness campaign which would allow broad stakeholder engagement with the pathway to care.

Establish the detection-care pathway and evaluate the effectiveness, including cost effectiveness, of these pathways in four differing public systems.

Build wider awareness on early childhood care and development for neurodevelopmental disabilities by working with advocates and advisors with experiential understanding of disability.
Build clinical, training, and research capacity in the field of neurodevelopmental disabilities in the region.

EXPECTED IMPACT

Improving awareness:
NAMASTE will support increased awareness and acceptance of neurodevelopmental disabilities, especially autism, in the implementation sites.
Establishing a pathway to care:
NAMASTE will establish a unique community-based care pathway for families of young children with neurodevelopmental disabilities in the selected sites.
Delivery by non-specialist providers:
Digital training and competency measures will be developed and evaluated in five languages for supporting detection and care services to families.
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.

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TEAM

Jonathan Green

Principal Investigator
Clinical Professor, Child & Adolescent Psychiatry, Division of Psychology & Mental Health University of Manchester, University of Manchester (UK)

Gauri Divan
Principal Investigator
Developmental Paediatrician and Director, Child Development Group, Sangath (India)

Reetabrata Roy

Co-Lead
Programme Director, Public Health Researcher and Programme Implementation, Sangath (India)

Vivek Vajaratkar

Co-Lead
Occupational Therapist, Sangath (India)

Deepak Jangra

Team Lead
Data Manager, Sangath (India)

Pattie Gonsalves

Co-Lead
Mental Health Researcher and Public Engagement Specialist, Sangath (India)

Gopika Kapoor

Co-Lead
Parent Representative, Advocate, Therapist (India)

Kathy Leadbitter

Co-Lead
Research Fellow, Division of Psychology & Mental Health, University of Manchester (UK)

Shruti Garg

Co-Lead
Clinical Senior Lecturer, Division of Psychology & Mental Health, University of Manchester (UK)

Paul Wilson

Co-Lead
Senior Lecturer – Implementation Sciences, Division of Population Health, Health Services Research & Primary Care, University of Manchester (UK)

Gemma Shields

Co-Lead
Lecturer in Health Economics, Division of Population Health, Health Services Research & Primary Care, University of Manchester (UK)

Linda Davies

Co-Lead
Professor of Health Economics, Division of Population Health, Health Services Research & Primary Care (UK)

Dr Catherine Aldred

Co-Lead
Consultant Speech and Language Therapist & Honorary Lecturer, University of Manchester (UK)

Richard Emsley

Co-Lead
Professor of Medical Statistics and Trials Methodology, King’s College London (UK)

Sunita Maleku Amatya

Co-Lead
Chairperson, AutismCare Nepal Society

Rena Shresta

Co-Lead
Director, AutismCare Nepal Society