Development, Adaptation, and Implementation of a Parent-Mediated Behavioral Intervention for Children with Autism Spectrum Disorder in Rural Bangladesh

Background:

It is often difficult to provide interventions for autism spectrum disorder (ASD) in low and middle-income countries (LMICs) since LMICs often have limited resources, underdeveloped health systems, and scarce ASD knowledge. Community-based strategies where caregivers or family members are interventionists may provide sustainable treatment for children with ASD in LMICs. Gaibandha, a rural district in northwestern Bangladesh, has low literacy and income levels. Families of children with ASD in this district are in great need of means to improve child communication skills and reduce challenging behaviors. Feasible, low cost and sustainable approaches to deliver ASD services are crucial in addressing needs of families of children with ASD in communities like Gaibandha.

Objectives:

To develop and adapt culturally appropriate educational materials for families of children with ASD and to train a local clinician to use these materials to implement a community-based parent-mediated behavioral intervention in Gaibandha.

Methods:

This study was built on of the infrastructure of JiVitA, a long-standing research program that works to improve maternal and child health outcomes in Gaibandha. Our study sampled participants from a prevalence study of ASD in children seven to nine years old that were offspring of a JiVitA cohort. Study investigators were trained in behavioral modification techniques and developed a training program for a local clinician. The program emphasized the fundamental principles of behaviors as well as ASD specific intervention. The study investigators assisted the local clinician in the creation and adaptation of educational materials that focused on understanding developmental milestones across domains and using behavioral modification techniques. All materials were carefully adapted to cultural norms and literacy levels of the Gaibandha population. For example, using culturally appropriate pictures to minimize the use of written words, and adapting concepts that are understandable to local parents who have very little formal education. The local clinician delivered group education sessions to ten families of children with ASD, followed by two one-on-one sessions with each family to discuss individualized strategies and coach parents. A brief qualitative survey was conducted at the end of the sessions to evaluate the program.

Results:

The local clinician successfully delivered the educational program, shared materials and worked one-on-one with families. Preliminary qualitative results indicate the importance of materials that are culturally appropriate and at a proper literacy level. Parents and caregivers were vocal in their need for support and tools to help their children. All families indicated that they wish they were trained with these skills when their child was younger and lamented the difficulties and stigmas of raising a child with ASD in their community.

Conclusions: Families indicated that the intervention was effective and expressed their gratitude for the support. By working to support families earlier, it may be possible to lessen the stigma and parental stress that impacts families of children with ASD in Gaibandha. We believe that this study is the first step in creating a sustainable and low resource intervention to aid families of children with ASD in rural Bangladesh or other communities share similar societal and cultural background.