Brief Background
NAMASTE is a research project which aims to design and implement a flexible evidenced pathway towards universal health coverage for children with autism, through a program of research, training and capacity building across India, Nepal and Sri Lanka. This grant has been awarded by the National Institute for Health and Care Research (NIHR) using UK aid from the UK Government which supports global health research.
This is a collaborative research project led by the University of Manchester in the UK and Indian mental health research non-governmental organizations, Sangath in India, AutismCare Nepal Society (ACNS) in Nepal and Sri Lanka College of Paediatricians in Sri Lanka. In Nepal, the ACNS will collaborate to conduct this project in all 14 wards of Godawari Municipality, Lalitpur district. The award will also develop research, training, and capacity building in the field of neurodevelopmental disorders in South Asia and train Non-Specialized Persons for the detection and intervention of children with autism and also the parents and caregivers of children with autism as paraprofessionals.
Project Objectives
1. General Objectives
2. Specific Objectives
- To implement the stepped detection pathway which uses a screening questionnaire aimed to pick up a broad range of Neurodevelopmental Disabilities (NDDs).
- To administer a questionnaire to all children to rule out autism risk.
- To refer children who are identified with a developmental risk at any stage to AutismCare Nepal Society for confirmation of their diagnosis.
- To refer children with behavioural, cognitive, and social communication difficulties into the stepped intervention pathway model.
- To implement the stepped care intervention pathway model by incorporating the World Health Organization Caregiver’s Skill Training (WHO CST) as the first-stage intervention for NDDs, followed by the PASSPlus model as a second stage for identified ASD.
Workstreams
1. Detection
- Detection of children aged 18 months-9 years for NDDs and autism by Female Community Health Volunteers (FCHVs) using tools like Rashtriya Bal Swasthya Karyakram (RBSK) and Social Attention and Communication Surveillance (SACS).
- Pre and post interventions using assessment tool such as parent well-being, parent quality of life, family empowerment and experience, child well-being and quality of life, child inclusion and participation, parent defined child functional outcomes.
2. Interventions
Parent-mediated intervention for Autism Spectrum Disorders in South Asia (PASSPlus): The platform for this collaboration was the development and testing in the UK of a new parent-mediated early intervention for autism; Preschool Autism Communication Therapy (PACT) is a leading example of the kind of autism treatment recommended by UK NICE.
WHO Caregiver skills training for families of children with developmental delays or disabilities (CST): is an evidence-informed model for primary intervention with children with NDDs. The program was designed to be freely available and easily implementable in Low- or Middle-Income Countries (LMIC) and other low-resource settings by non-specialists.
3. Community Engagement and Participation
The project aims to work with lived experience advocates and panels to co-develop and implement a multi-country public engagement strategy using guidance on participatory approaches to build awareness about childhood neurodevelopmental disorders including autism with a view to increasing community-level knowledge and the participation and inclusion of persons with autism.
Major Activities Conducted/Planned:
Overall Project
- The orientation of NAMASTE project has been given to Health Post In-Charges, FCHVs, ward chairpersons and representatives and officials of Godawari Municipality.
- The Progress and Experience Sharing Program of NAMASTE project was conducted amid all Health Post In-Charges, officials and Mayor of Godawari Municipality.
1. Detection
- 103 FCHVs have received 4 days training on Detection, Community Engagement and Inclusion (CEI) and REDCap and are currently monitoring children aged 18 months-9 years using SACS and RBSK using the REDCap.
- This was followed by the field supervision which allowed FCHVS hands on experience of what is being lwarned in the classroom training in real settings.
- Monthly meeting with all trained FCHVs for updates about data collection has been conducted.
- Incentives are also being provided to FCHVs after they complete the monitoring of children.
2. Intervention
WHO-CST
- Four FCHVs from Godawari Municipality have been trained to deliver WHO-CST training to the caregivers of children with NDDs in Godawari.
- One Project Based Facilitator has been trained to facilitate the FCHVs in the community.
PASS Plus
- Two Master Trainers have successfully achieved competency in the PASS Plus intervention, strengthening their capacity to train, deliver and supervise the intervention sessions.
- Currently, the Master Trainers are training two PASS Plus Counsellors to support children and families with the skills they need.
- PASS and PASS Plus communication manuals have been adapted in Nepali.
Evaluation Measures
- The Evaluation Measures have been adapted to suit the Nepali cultural and linguistic context.
- The evaluation process has started in Godawari Municipality.
3. CEI
- The CEI toolkits were familiarized to the 103 FCHVs who participated in the 4 days Detection, CEI and REDCap training in July-September 2024.
- The FCHVs have been disseminating the toolkits i.e. CDM calendars to parents of children from 18-24 months when they go for detection. They will also share the expert’s audio before taking consent of the participant.
- The awareness posters have been disseminated to the health posts. It will further be disseminated to the immunization centers, government hospitals, educational institutions, community centers, local government offices, Organizations of Persons with Disabilities (OPDs) etc. in coordination with Godawari Municipality.
- The CEI training on use of toolkits for Assessors for intervention has been completed.
Support:
Joint Collaboration:
Joint Collaboration:
