Parent-mediated intervention for Autism Spectrum Disorders in South Asia
PASS can be viewed as a continuation of Sangath’s ARTI project, which explored the experiences of parents of children with autism and estimated the prevalence and risk factors of Autism and other neuro-developmental disabilities in Goa. One of the unmet needs of parents of children with Autism was the lack of accessible intervention strategies. With this in mind, the PASS project systematically adapted an evidence-based parenting intervention for Autism.
To culturally adapt, the PACT (Pre-school Autism Communication Therapy) intervention for delivery by a non-specialist health worker and conduct a pilot evaluation of acceptability and feasibility of the adapted intervention (PASS) in Goa and Pakistan.
The team along with international collaborators adapted the PACT training manual systematically using a number of methodologies which included qualitative interviews, focus group discussions, intervention adaptation workshops and case studies. The aim of this formative work was to design an intervention which could be delivered by non-specialist health workers. The resulting intervention is the Parent mediated intervention for Autism Spectrum Disorder in South Asia (PASS) intervention. The PASS intervention is a developmental intervention conducted in a naturalistic setting and primarily works at making parents aware of how they can change their interaction with their child with Autism to enhance communication. The intervention is supported by video feed back.
Simultaneously all baseline and outcome measures and instruments were adapted and translated for local use.
A two-site, two-arm single blinded exploratory randomized controlled trial of the PASS intervention against routine care for children with ASD was carried out in Goa, India, and Rawalpindi, Pakistan from April 2013 to March 2014. The outcome assessments were completed 8 months after baseline assessments and were administered from March 2013 to April 2014.
The project was being conducted with the partnership of three other sites – the University of Manchester and University of Liverpool in the UK, and the Institute of Psychiatry in Rawalpindi, Pakistan.
1. Dr Gauri Divan presented the task-sharing approach employed in the project at the World Health Organisation in Geneva in September at a ‘Consultation On Autism Spectrum Disorders and Other Developmental Disorders: From Awareness To Capacity Building’.
2. Dr Gauri Divan attended the National Trust Annual Award ceremony Spandan 2013.
3. Vivek Vajaratkar attended a workshop on the Design and Analysis of Randomised Controlled Trials in September at the Indian Institute of Public Health in New Delhi
4. Vivek Vajaratkar participated in the International Meeting For Autism Research (IMFAR) 2013 in San Sebastian, Spain, at which researchers from across the globe discussed treatments for the disorder.
5. Sangath was also represented at Autism Speaks’ GAPH meeting, where participants shared outcomes of research, compared challenges and discussed solutions.
6. Dr Gauri Divan is part of a Working Group of the National Trust in creating a web-based resource for families of children with Autism
7. Vivek Vajaratkar presented on the PASS approach at the ‘Global Autism Summit’ held at Rabat, Morocco in December 2014.
Summary of Outcomes
1. Successful adaptation of the PACT intervention to ensure acceptability to local communities and build clinical capacity of South Asian teams to train and supervise in the delivery of the intervention.
2. Successful development of a training/supervision ‘task-shifting’ pathway, enabling non-specialists, under specialist supervision, to deliver the intervention with parents. This success is demonstrated objectively by the achievement of satisfactory intervention manual fidelity and effectiveness in the Phase 2 trial – a major achievement with a complex intervention using non-specialist health workers ( publications in preparation)
3. Successful development of a measurement protocol, along with relevant training and competency measures for non specialists to deliver the PASS intervention.
Follow Up on PASS work
The team has been awarded a Grand challenges for the PASS Plus Project