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

Saturday, May 14, 2016: 11:30 AM-1:30 PM
Hall A (Baltimore Convention Center)
J. M. Blake1, E. Rubenstein2, P. C. Tsai3, H. Rahman4, S. R. Rieth5, J. Chan6, A. Hasmot4, S. Mehra1, A. A. M. Hanif4 and L. C. Lee3, (1)Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, (2)Department of Epidemiology, University of North Carolina, Chapel Hill, NC, (3)Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, (4)Johns Hopkins University Bangladesh, Gaibandha, Bangladesh, (5)San Diego State University, San Diego, CA, (6)University of California, San Diego, San Diego, CA
Background: Timely access to behavioral intervention services has been shown to promote positive outcomes for children with Autism Spectrum Disorder (ASD). However, for many children living in low and middle income countries (LMICs), ASD services are rarely available or affordable. In rural northwestern Bangladesh, the lack of existing infrastructure is coupled with low literacy rates, extreme poverty, a dispersed population, limited resources, and inconsistent schooling for children. The combination of these factors makes it extremely difficult to establish clinic or school based ASD intervention programs. Little is known about adapting and implementing interventions and services in such rural communities, but in-home parent-mediated interventions are likely a feasible, low cost, and sustainable approach to address the needs of children with ASD in LMICs.

Objectives: We aim to describe the process of developing and adapting a sustainable parent-mediated ASD intervention for a community in rural Bangladesh and highlight the challenges and barriers to cultural adaptation and implementation.  

Methods: In rural northwestern Bangladesh, researchers from the US and Bangladesh have been conducting research as part of a maternal and child health project called JiVitA aimed at improving pregnancy, birth, and child growth and development outcomes. Recently, a community based ASD study aimed to screen and test for ASD and examine risk factors in the study population. The current work builds on this recently completed study. The intervention was developed based on Pivotal Response Training (PRT) techniques and positive behavior support tools. Study investigators worked with US based PRT experts to familiarize themselves in these techniques and develop strategies and educational materials that could be used in a low resource and low literacy community. Study investigators then spent two months in the JiVitA study area to better understand the community’s culture and needs. While there, investigators trained a JiVitA master’s level child developmental psychologist in this intervention and used his expertise to further culturally adapt the materials. Field implementation is scheduled for winter 2015 and will include two half-day group sessions for parents followed by three individual in-home coaching sessions delivered by the project trained psychologist under the supervision of the study investigators.

Results: Through developing and adapting this intervention, we have gained insight into implementing ASD interventions in a rural Bangladeshi setting where community plays a key role in family dynamics with the broader community oftentimes acting as one family unit. Persons with disabilities (and their families) are often stigmatized within the community. Interventions need to be structured to avoid excess attention to the family or provide a lesser version of the intervention to the whole community. Furthermore, the relationship between parent and child is inconsistent across cultures. Any intervention needs to carefully consider the culturally appropriate role of the interventionist when supporting families of children with ASD.

Conclusions: Developing and adapting ASD behavioral interventions in a LMIC requires careful consideration of an area's knowledge about ASD, approach to parenting, acceptance of disability, cultural child behavior norms, and interaction between the family and community. Further results and findings will be discussed.