Identifying Children with Intellectual Disabilities in the Tribal Population of Barwani District in State of Madhya Pradesh, India

Abstract

Background: Low-and middle-income countries (LAMI) lack an integrated and systematic approach to identify people with intellectual disabilities. Screening surveys are considered resource-intensive; therefore, alternative approaches are needed. This study attempted to identify children up to age 18 years with intellectual disabilities through a mixed-method approach involving focus group interviews (FGIs) and door-to-door surveys.

Materials and methods: Focus groups were conducted with the assistance and involvement of local leaders in four villages of Barwani district of Madhya Pradesh with a 99% tribal population in all four villages. A formal survey of the community was then conducted to determine the prevalence of intellectual disabilities based on a standardized screening instrument (NIMH-DDS).

Results: Thirty focus group interviews were conducted involving 387 participants (males 284, females 103) over a period of 13 days. The entire adult population (N = 8797) was then surveyed for intellectual disabilities using a standardized screening instrument. The data revealed a close similarity in the prevalence rates of intellectual disabilities, as determined by the two approaches (Focus Group Interviews, 5.22/1000 versus Survey, 5.57/1000).

Conclusion: A qualitative method using FGIs successfully identified people with intellectual disabilities in an economically deprived tribal area, showing that a community-based approach provides a close estimate of intellectual disabilities based on a formal survey using standard diagnostic criteria. These data suggest that FGI, along with other qualitative data, could be helpful in designing and in serving as an entree for community-based interventions.

Keywords: community-based rehabilitation; intellectual disabilities; low-and middle-income countries; mixed-method research; prevalence.