Parent-mediated intervention for Autism Spectrum Disorders in South Asia (PASS)
The Parent-mediated intervention for Autism Spectrum Disorders in South Asia (PASS) study is an adaptation and implementation of the PACT (Pre-school Autism Communication Trial) intervention in Pakistan and Southern India. It is a two year project funded by the Autism Speaks Global Autism Public Health initiative. PASS involves culturally adapting and assessing the feasibility, acceptability and effectiveness of the PACT intervention in South Asian local settings.
This is an exciting collaborative project between:
- Prof. Vikram Patel, Dr Gauri Divan and Dr Vivek Vajaratkar, and other members of ARTI team in Sangath, Goa, India
- Prof. Fareed Minhas and Dr Ayesha Minhas, at The Institute of Psychiatry, Rawalpindi, Islamabad
- Prof. Atif Rahman at The University of Liverpool, UK
- Prof. Jonathan Green, Dr Catherine Aldred, Carol Taylor and Dr Kathy Leadbitter at The University of Manchester, UK
The majority of children with Autism Spectrum Disorders (ASD) live in low and middle-income countries and have little access to effective interventions or services. Most research in interventions for ASD has been conducted in richer countries with relatively large numbers of ASD specialist therapists. This project is important because it aims to develop an intervention that has the potential to be used in settings where there are few specialist autism service providers, a challenge faced by most of the developing world.
The PACT intervention trains parents to help their children communicate and has been found to help parents communicate with their children in a more sensitive and responsive way, which leads to increased communication from the child. Goa, India, and Rawalpindi, Pakistan, have very large unmet needs for care for autism. The aim of this project is to adapt this intervention carefully so that it can be used by parents of children in low-income countries like these. Because there are very few specialists in these settings, the project will explore the impact of the delivery of the intervention by trained and supervised non-specialists.
The project has three Phases:
The investigators will talk to parents of children with ASD about their experiences, to people who may have tried to help these parents and their children, and to local experts who are involved in developing services for children. Using this information, the South Asia and UK teams will collaborate to work with local experts to make necessary changes to the intervention so that it can work in these South Asian settings.
A randomised controlled trial will be carried out to test the adapted intervention. 60 children with ASD and their parents, recruited from Goa and Rawalpindi, will be allocated at random to either the PASS intervention group or the treatment-as-usual group (who receive the usual local services, but no additional PASS therapy). The study aims to evaluate the effectiveness of this therapy after 8 months by carrying out assessments of parent-child interaction and the child’s social functioning.
Data analysis and the dissemination of results.
Summary of Outcomes
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.
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.
Successful development of a measurement protocol, along with relevant training and competency measures for non-specialists to deliver the PASS intervention.