Community Management of Intellectual Disability – Epidemiology and Needs Assessment

Project Title
Community management of intellectual disability in Pakistan: An exploratory study.

Year

2004 to 2007

Collaborators

University of Manchester, UK, Child Advocacy International, Islamabad, Pakistan

Project Information

In this project, HDRF in collaboration with the University of Manchester, UK and Child Advocacy International, Islamabad conducted a study in the rural settings of sub districts Kallar Syedaan and Gujar Khan, Rawalpindi, Pakistan. The carers of persons with Intellectual Disability (ID) were surveyed using quantitative and qualitative instruments. In-depth interviews of carers and key primary health providers were conducted. Focus groups were also carried out and data were triangulated and interpreted in the light of peer reviewed literature.

The findings of this exploratory study suggested that there was significant delay in detection of ID, especially, in rural setting where more than 70% of population of Pakistan resides. This missed opportunity for rehabilitation in early formative years was a cause of significant distress for the carers who rarely received valid information about course, prognosis and what remedial action to take.

In conclusion, this study supported the need to develop a feasible, cost-effective, community level intervention, which could be up-scaled and integrated into existing healthcare systems. Such an intervention would need to have an educational component not only for the carers, but also for the primary healthcare workers and school teachers. It should be community-based to ensure maximum population coverage, with an emphasis on solving problems that are prioritized by the carers, such as activities of daily living and improved adaptive behavior. It should have a component of advocacy and local community mobilization but at the same time should be adequately supported by the health and social care systems.

In light of the findings from this study, a training manual for lady health workers was developed in the Urdu language to assist the parents of children with intellectual disabilities. It was tested for feasibility in a rural setting and found to be beneficial.

Publications