Fogerty International Center Award: Mobile-based Care for Children with Autism Spectrum Disorder using Remote Experience Sampling Method (mCARE)
PROJECT SUMMARY/ABSTRACT: In Bangladesh, social-cultural-financial constraints and a scarcity of mental health care practitioners has deprived families raising children with Autism Spectrum Disorder (ASD) from regular monitoring, care, and support. However, the overwhelming adoption (~80%) of mobile phones in Bangladesh in recent years has created an opportunity to improve the existing practice of care using affordable mobile applications. We propose to design, build, deploy, and study the impact of mCARE, a mobile application that will introduce Experience Sampling Method (ESM) (an established and effective method of monitoring the progress of mental health) to the existing practice by allowing the caregivers to routinely report the behavioral progress of children with ASD, and work as an evidence-based and data-driven remote behavioral monitoring platform for the care practitioners. The design of mCARE will follow Value Sensitive Design (VSD) approach to ensure a tight integration with the local economic, social, and cultural values in Bangladesh. The objectives of this proposal are as follows: a) design and build mCARE, that will allow caregivers to routinely report, and thus build the personal records of behavioral progress for each child with ASD, b) improve and expedite the decision making process of the physicians and therapists (referred as only practitioners hereafter) by building appropriate visualization tools to summarize this information, and c) assess the impact of mCARE on treatment and management practices around ASD care in Bangladesh. We propose mCARE to be tested with caregivers of 300 children with ASD in Bangladesh for one year. The children will be selected from four reputed ASD care institutions in Bangladesh – two government and two privately owned, situated in two different districts. They are – the National Institute of Mental Health (NIMH), the Institute of Pediatric Neuro-disorder & Autism (IPNA), Autism Welfare Foundation (AWF), and “Nishpap”. The participants will cover a wide range of socio-economic and cultural diversity in Bangladesh. A positive outcome of using mCARE will promote scaling up this service to all of Bangladesh. This study will introduce a novel digital platform for behavioral research for both public and private mental health institutions in Bangladesh. Furthermore, the administrative (public-private collaboration) and technical (mCARE tools) infrastructures developed through this project can later be utilized and/or replicated for long-term monitoring of other chronic diseases including diabetes and AIDS both in Bangladesh and other LMICs around the world. The proposed ESM application and corresponding practitioner-centered data platform can be adapted to improve practitioner-family communications and treatment management for children with ASD in the U.S. (especially for rural and remote locations) and abroad. In the U.S. especially, long-term behavioral data are not readily available for practitioners and could be a useful tool in pharmaceutical trials and this proposal can serve as the proof of concept.