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Community management of intellectual disabilities in Pakistan: a mixed methods study
Author(s) -
Mirza I.,
Tareen A.,
Davidson L. L.,
Rahman A.
Publication year - 2009
Publication title -
journal of intellectual disability research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.941
H-Index - 104
eISSN - 1365-2788
pISSN - 0964-2633
DOI - 10.1111/j.1365-2788.2009.01176.x
Subject(s) - psychological intervention , remedial education , focus group , medicine , formative assessment , distress , population , community based rehabilitation , qualitative research , intellectual disability , health care , family medicine , rehabilitation , gerontology , psychology , psychiatry , clinical psychology , environmental health , physical therapy , pedagogy , social science , mathematics education , marketing , sociology , economic growth , economics , business
Background Pakistan has one of the highest reported rates of childhood intellectual disabilities (ID) in the world. Prevalence estimates vary from 19.1/1000 for serious ID to 65/1000 for mild ID. Methods We surveyed carers of persons with ID ( n = 100) using quantitative and qualitative instruments. We conducted in‐depth interviews of carers ( n = 16) and key primary health providers ( n = 10). We also carried out focus groups ( n = 7). Data were triangulated and interpreted in light of peer reviewed literature. Results There was a delay of 2.92 (95% CI 1.9 to 3.94) to 4.17 (95% CI 2.34 to 6.01) years between detection and seeking of care. Parental stress associated with caring for these children was high (mean Self‐Reporting Questionnaire score 8.4; 95% CI 6.80 to 9.91). Home management consisted mainly of physical containment. Stigma associated with ID contributed to decreased opportunity for these children and families to participate in community activities. There was a lack of knowledge about causation and effective interventions for ID. Conclusions Our findings suggest that there is 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 is a cause of significant distress for the caregivers who rarely receive valid information about course, prognosis and what remedial action to take. There is a need to develop feasible, cost‐effective, community level interventions, which can be integrated into existing healthcare systems.