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.
1. General Objective
To evaluate the implementation and effectiveness of integrated detection and intervention care pathway for neurodevelopmental disability and Autism Spectrum Disorder (ASD) in South Asia with Nepal as a key implementation site.
2. Specific Objectives
- To implement the stepped detection pathway which uses a screening questionnaire aimed to pick up a broad range of Neurodevelopmental Disorders (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 behavioral, 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.
- Detection of children aged 2-5 for Neurodevelopmental Disorders (NDDs) and Autism Spectrum Disorder (ASD) 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.
- 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.
Activities conducted from April-November 2023 (till date)
The Senior Leadership Team (SLT) visited ACNS office at Harisiddhi, Lalitpur from 27-29 March 2023. Prof. Jonathan Green, Dr. Shruti Garg and Dr. Kathy Leadbitter from University of Manchester, UK and Dr. Gauri Divan from Sangath, India were in the team.
Project Orientation Program was organized amid Health personnels of health unit of the palika and health posts in-charge and Auxiliary Nurse Midwives (ANM) of all 14 wards in Godawari Municipality on 27 March 2023. Dr. Rena Shrestha, Project Director of NAMASTE explained briefly about the project, its objectives and workstreams. The Vice Mayor of Godawari Municipality, Mrs. Muna Adhikari Kunwar expressed her commitment to support the project in its endeavour.
The NAMASTE team visited the health posts in two wards Bishankhunarayan-2 and Jharuwarashi-13 and explored the possibility of mobilizing Female Community Health Volunteers (FCHVs) as Non-Specialist Providers. The FCHVs also expressed their interest and availability to support in the detection and intervention in the project.
The interaction program was organized at NHRC to familiarize all concerned stakeholders about NAMASTE project. Stakeholders from various organizations were present in the program Dr. Sunita Maleku Amatya, Chairperson of ACNS made a brief presentation about the organization and Dr. Rena Shrestha, Project Director of NAMASTE presented about the project, its objectives and the workstreams. This was followed by the discussion, queries and clarifications. Dr. Roshan Pokhrel, Secretary of MoHP highlighted on the importance of awareness and community inclusion and participation and requested the NAMASTE project team to go parallel with the programs of government.
The NAMASTE team’s visit to Thecho, Godamchaur, and Godawari health posts, and Kotdada and Chapakharka Nagar health clinics marked the inception of social (resource) mapping of Godawari Municipality and identification of NSPs. A social map of all 14 wards of Godawari Municipality, list of focal persons/health posts in-charge and FCHVs has been prepared.
The project orientation program for health post in-charge was held in Bajrabarahi Chapagaun Hospital on 23 April 2023. The aim of the program was to provide information regarding Neurodevelopmental Disorder (NDDs) and Autism Spectrum Disorder (ASD) to the health in-charge and to determine the Non-Specialist Providers (NSPs) for detection and intervention workstream. NAMASTE team members from Autism Care Nepal Society (ACNS) facilitated the sessions on disability, autism and about NAMASTE project and its objectives.
The preliminary Community Advisory Board (CAB) Workshop was organized amongst all CAB members to explain about NAMASTE project and their roles and responsibilities on 15 May 2023.
The orientation on NAMASTE Project was organized for the Female Community Health Volunteers (FCHVs) in Godawari Municipality on 31 May and 1 June 2023. The FCHVs who will be involved as NSPs in the project were familiarized with autism and NAMASTE project. The eligible FCHVs will be selected using the criteria for further action.
India’s Quicksand Team visited Nepal from 14-20 June 2023 under Workstream 4: Community Engagement and Inclusion (CEI) for toolkit development through In-Depth Interviews parents/caregivers, autistic individuals and specialist and non-specialist health workers and Co-design workshops with parents/caregivers and non-specialist health workers. The developed prototype toolkit will help parents/caregivers’ access services and support for autism and Neurodevelopmental Disabilities (NDDs) and also enable better awareness building for autism and NDDs in the communities.
The Community Advisory Board (CAB) meeting was organized on 4 September 2023 in Godawari Municipality amid the Deputy Mayor of the municipality to orient her about autism and NAMASTE project and explain about her roles as a CAB member.
An orientation on autism and NAMASTE project was organized for the potential actors of street drama on 25 September 2023. This was followed by a four day long comprehensive training on street drama and a rehearsal amongst the ACNS Board Members who gave suggestions to improvise it. The street drama will be shown in the local community from November 2023 for mass awareness on autism.
The User Testing workshop under NAMASTE project was successfully conducted from 6-8 November 2023 with guidance from Sangath and Quicksand team, India. The purpose of this workshop/interviews was to get insights from the participants to enhance the project team’s ideas to develop community engagement and awareness toolkits on autism and neuro developmental disabilities.
From mid of July 2023, the project team visited 13 out of 14 wards of Godawari Municipality to verify the eligibility of the FCHVs for SACS administration and detection and also to meet ward chairpersons and officials. A final field visit to Debichaur-7 is planned for the last week of November 2023.
Regular meeting/catch up calls is ongoing with University of Manchester (UoM), Sangath, Quicksand.