Together with colleagues in India, researchers at Oxford Population Health have developed a new conceptual model for community-based, cross-sectoral, and family-centred inclusive interventions to prevent long-term health problems from non-communicable diseases in children with intellectual disabilities.
The researchers estimate that interventions guided by this conceptual model may have the potential to reduce and prevent long-term health problems in millions of children living with intellectual disabilities in India, and around the world. The drivers behind the framework and the methods used to create it are published in PLOS Global Public Health.
1.6 million children aged under five in India have an intellectual disability, and India has a higher number of people living with an intellectual disability than any other country in the world.
Dr M Thomas Kishore, Professor of Clinical Psychology at the National Institute of Mental Health and Neuro-Sciences in India and a co-author of the paper, said ‘Children with intellectual disabilities have a higher risk of long-term physical and mental health problems in adulthood. The risk factors for these are modifiable, but children in low- and middle-income countries are often excluded from mainstream disease prevention and health promotion programmes, putting their long-term health at risk.’
The researchers sought to develop an evidence-based conceptual framework for an inclusive intervention developed in collaboration with families to reduce the risk of communicable and non-communicable diseases in children with intellectual disabilities in India.
From April to July 2020, the researchers undertook community engagement and involvement activities in ten states in India using a community-based participatory model, following guidelines for a bio-psycho-social approach. The researchers targeted modifiable risk factors for non-communicable diseases in children aged between four and ten years old, and sought to address the stigma and social exclusion experienced by this population that exacerbates their health problems.
In total, 70 community stakeholders from a range of socioeconomic backgrounds were consulted as part of the project: 44 parents of children with intellectual disability and 26 professionals who work with people with intellectual disabilities. The stakeholders participated in three rounds of consultations to develop the conceptual framework and theory of change.
Following the consultations with stakeholders, the research team identified five evidence-based core components to drive the development of an intervention to protect the long-term health of children with intellectual disabilities:
- A physical activity programme for children;
- A guide to a healthy diet to provide good nutrition to the children using locally available and affordable food;
- Training parents to continue regular adaptive behavioural and cognitive stimulation, including in everyday activities alongside children who do not require specialist resources;
- Education and training to improve parents’ knowledge of accessing healthcare services;
- Group counselling for parents and children to address behavioural issues, individual barriers to exercise and how to follow a healthy diet, improve emotional and mental wellbeing, and to encourage social inclusion.
Dr Mythili Hazarika, Associate Professor of Clinical Psychology at Gauhati Medical College and Hospital in India and co-lead of the project stressed the importance of translating the framework to evidence and policy actions in India. She said, ‘The model developed for a family-centred cross-sectoral programme can target the lifestyle-related and psychosocial risk factors to reduce the risk of non-communicable diseases in children with intellectual disability in India and improve their quality of life.’
Dr Manisha Nair, lead investigator and Associate Professor at Oxford Population Health’s National Perinatal Epidemiology Unit, said ‘Finding ways to take actionable steps to reduce the risk of disease in children with intellectual disabilities is vitally important for protecting their health on a long-term basis. While our research looked specifically at children living in India, this approach could be applied to other low- to middle-income countries where communities and individual members of the public are not commonly engaged in developing interventions to support health outcomes.’
Professor Sasha Shepperd, Professor of Health Services Research at Oxford Population Health, said ‘It is crucial that communities are included in the design of health interventions to ensure that services reflect their priorities and are responsive to the specific community contexts. An urgent next step is to test the conceptual model in a variety of different settings to determine its acceptance within communities and how effective it is at improving long-term health outcomes.’
The researchers have also developed the guidance to facilitate the use of the conceptual model, which is published as supplementary material.