Mental retardation is associated with enormous personal, social, and economic costs as a result of early onset and lifetime disability. The stigma associated with these disorders is also a barrier to help seeking. Pakistan, a low income country, has the highest level of reported mental retardation among the low- middle- income countries. The prevalence estimates for Pakistan vary from 19.1/1000 for serious retardation to 65/1000 for mild retardation. There is an urgent need to develop expertise that would provide effective and contextually appropriate management and rehabilitation of these disorders. Such expertise would need to be disseminated at the community health-worker level and utilize the existing strengths and resources of families and communities in Pakistan. The broad long-term aim of this application is to develop and to implement a system of psychological and educational intervention for carers of mental retardation in Pakistan. To achieve this, we intend to develop and demonstrate evidence based practice, that is rooted in the local context, and systematically disseminate these to the community-based primary health care providers in Pakistan. This would be achieved by adaptation of an existing psycho-educational approach, grounded in cognitive-behavior theory and delivered to carers in the community by local health workers, to improve infant health outcomes. This approach has been successfully piloted in Pakistan and is currently being evaluated through a large cluster randomized trial funded by the Wellcome Trust, UK. Preliminary data indicates that this approach is culturally appropriate and acceptable to both health workers and the community at large. Any adaptation of an intervention to another context or condition needs to be informed by rigorous qualitative information and this is the intention of our preliminary proposal.
The aim of this preliminary proposal is 1. To explore the attitudes and beliefs of carers of those with mental retardation with regard to its causation, and management, 2. Their experience, including positive practices, of caring using focus groups and a semi-structured interview, 3. Delineate pathways to care for those with mental retardation, and 4. Using qualitative methodology explore the beliefs about treatment of mental retardation of health care providers along this pathway. At an institutional level, we intend to develop and enhance the profile of an existing 25-year-old center for special education and training in Lahore, Pakistan to an international center for collaborative research in mental retardation and service development. Thus it will enhance research and development capacity between Pakistan and UK for future related research activities. ? ? ?

National Institute of Health (NIH)
Fogarty International Center (FIC)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZRG1-ICP2-B (50))
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Michels, Kathleen M
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Human Development Research Foundation
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Mirza, I; Tareen, A; Davidson, L L et al. (2009) Community management of intellectual disabilities in Pakistan: a mixed methods study. J Intellect Disabil Res 53:559-70