Peer-reviewed article
A community developed conceptual model for reducing long-term health problems in children with intellectual disability in India
Manisha Nair, Mythili Hazarika, M. Thomas Kishore, Nabarun Sengupta, Ganesh Sheregar et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001Children with intellectual disability in India face higher risks of long-term health problems but are excluded from mainstream disease prevention programmes. Researchers used community-based participatory methods with 70 stakeholders (parents and professionals) across ten Indian states to develop a conceptual framework and Theory of Change model for a family-centred, needs-based intervention to improve health outcomes. The framework maps stakeholder priorities with evidence from systematic reviews and identifies structural and social barriers to implementation. The study calls for testing this model to determine its acceptance and effectiveness in the Indian context.
Key points
- India has the highest global prevalence of intellectual disability, with 1.6 million affected children under five
- Children with intellectual disability are currently excluded from mainstream health promotion and disease prevention programmes in India
- Seventy stakeholders (44 parents and 26 professionals) from ten States contributed to developing the conceptual framework through three rounds of consultations
- The framework integrates stakeholder priorities with systematic review evidence and addresses structural and social barriers to implementation
- The study identifies an urgent need to test the model for acceptance and effectiveness given socio-economic challenges faced by families
Limitations
This document describes model development based on stakeholder consultation and evidence synthesis, but does not report empirical testing or evaluation of the intervention's effectiveness. It cannot tell us whether the proposed intervention actually improves health outcomes for children with intellectual disability.
Abstract
Children with intellectual disability (ID) have a higher risk of long-term health problems in adulthood. India has the highest prevalence of ID of any country with 1.6 million under-five children living with the condition. Despite this, compared with other children, this neglected population is excluded from mainstream disease prevention and health promotion programmes. Our objective was to develop an evidence-based conceptual framework for a needs-based inclusive intervention to reduce the risk of communicable and non-communicable diseases among children with ID in India. From April through to July 2020 we undertook community engagement and involvement activities in ten States in India using a community-based participatory approach, guided by the bio-psycho-social model. We adapted the five steps recommended for the design and evaluation of a public participation process for the health sector. Seventy stakeholders from ten States contributed to the project: 44 parents and 26 professionals who work with people with ID. We mapped the outputs from two rounds of stakeholder consultations with evidence from systematic reviews to develop a conceptual framework that underpins an approach to develop a cross-sectoral family-centred needs-based inclusive intervention to improve health outcomes for children with ID. A working Theory of Change model delineates a pathway that reflected the priorities of the target population. We discussed the models during a third round of consultations to identify limitations, relevance of the concepts, structural and social barriers that could influence acceptability and adherence, success criteria, and integration with existing health system and service delivery. There are currently no health promotion programmes focusing on children with ID in India despite the population being at a higher risk of developing comorbid health problems. Therefore, an urgent next step is to test the conceptual model to determine acceptance and effectiveness within the context of socio-economic challenges faced by the children and their families in the country.