Adapting an evidence-based intervention for autism spectrum disorder for scaling up in resource-constrained settings: the development of the PASS intervention in South Asia

Abstract

BackgroundEvidence-based interventions for autism spectrum disorders evaluated in high-income countries typically require highly specialised manpower, which is a scarce resource in most low- and middle-income settings. This resource limitation results in most children not having access to evidence-based interventions.ObjectiveThis paper reports on the systematic adaptation of an evidence-based intervention, the Preschool Autism Communication Therapy (PACT) evaluated in a large trial in the United Kingdom for delivery in a low-resource setting through the process of task-shifting.DesignThe adaptation process used the Medical Research Council framework for the development and adaptation of complex interventions, focusing on qualitative methods and case series and was conducted simultaneously in India and Pakistan.ResultsThe original intervention delivered by speech and language therapists in a high-resource setting required adaptation in some aspects of its content and delivery to enhance contextual acceptability and to enable the intervention to be delivered by non-specialists.ConclusionsThe resulting intervention, the Parent-mediated intervention for Autism Spectrum Disorder in South Asia (PASS), shares the core theoretical foundations of the original PACT but is adapted in several respects to enhance its acceptability, feasibility, and scalability in low-resource settings.

Systematic review of factors that may influence the outcomes and generalizability of parent‐mediated interventions for young children with autism spectrum disorder

“…Encouragingly, families with diverse annual incomes (where reported) have been included in this research, although the majority of parents have reportedly had postsecondary school education. Accordingly, the findings reinforce calls and initiatives [e.g., Divan et al, 2015] for clinical-research to expand the scope of parent-mediation research to include families in low resource settings. Although a small number of studies examined the application of parent-mediated interventions in culturally, linguistically, and geographically diverse communities [e.g., Chiang, Chu, & Lee, 2016;Rahman et al, 2016;Zhou et al, 2018], the majority of studies to date have been conducted in the United States and United Kingdom and have featured predominantly white children.…”

“…Parent-mediated interventions also have the potential to facilitate an intensive, naturalistic, and tailored approach to the intervention, which is consistently recommended in good practice guidelines [e.g., Roberts & Williams, 2016] and may be an important source of empowerment for parents [Guralnick, Hammond, Neville, & Connor, 2008]. Furthermore, these interventions may provide a more economical and practical means for families to support their children's development, particularly in low resource settings [Divan et al, 2015]. Accordingly, there has been rapid growth in research examining the effectiveness of parent-mediated interventions in the past 15 years [Guralnick et al, 2008;Nevill, Lecavalier, & Stratis, 2018].…”

The Feasibility and Effectiveness of PASS Plus, A Lay Health Worker Delivered Comprehensive Intervention for Autism Spectrum Disorders: Pilot RCT in a Rural Low and Middle Income Country Setting

“…Autism Spectrum Disorders (ASD) is a priority condition in low and middle income country settings (LMIC), with a global prevalence of approximately 1%, and a minimal evidence base for community interventions that can be delivered at scale in these settings [Elsabbagh et al, ; Reichow, Servili, Yasamy, Barbui, & Saxena, ]. As a way to address this “treatment gap” for interventions delivered in the community, an international group of collaborators systematically adapted PACT, an evidence‐based communication intervention [Green et al, ], originally developed for delivery by specialist speech and language therapists in the UK for delivery through the process of task sharing to non‐specialist workers in two countries in South Asia [Divan et al, ]. “Task shifting” or “task sharing” is recommended by the World Health Organisation and aims to address the severe shortage of a specialist workforce by allocating healthcare tasks in such a way that less qualified and more affordable workers can be trained to deliver components, under the support and supervision of more skilled specialists, to improve access and cost‐effectiveness.…”

A Pilot Study of a Culturally Adapted Early Intervention for Young Children With Autism Spectrum Disorders in China

“…However, formal certification of the ESDM trainers required direct supervision and significant funds, neither of which was available in China at the time of this study. The parent coaching provided by teachers was an important "task-shifting" adaptation, enabling nonspecialists with fewer qualifications trained over a shorter period of time to deliver services in response to health crises (Divan et al, 2015). It is extremely important to implement a more rigorous task-shifting process to ensure that the intervention fidelity transferred from specialists to nonspecialists.…”