Community Management of Intellectual Disabilities in Pakistan: A Mixed Methods Study
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| Title: | Community Management of Intellectual Disabilities in Pakistan: A Mixed Methods Study |
|---|---|
| Language: | English |
| Authors: | Mirza, I., Tareen, A., Davidson, L. L., Rahman, A. |
| Source: | Journal of Intellectual Disability Research. Jun 2009 53(6):559-570. |
| Availability: | Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp |
| Peer Reviewed: | Y |
| Page Count: | 12 |
| Publication Date: | 2009 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Mental Retardation, Focus Groups, Caregivers, Home Management, Foreign Countries, Community Services, Community Programs, Attitude Measures, Interviews, Access to Health Care, Parents, Child Rearing, Stress Variables, Questionnaires, Social Bias, Social Attitudes, Family Environment, Intervention, Rural Areas, Disability Identification |
| Geographic Terms: | Pakistan |
| DOI: | 10.1111/j.1365-2788.2009.01176.x |
| ISSN: | 0964-2633 |
| Abstract: | 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. (Contains 4 tables.) |
| Abstractor: | As Provided |
| Number of References: | 43 |
| Entry Date: | 2009 |
| Accession Number: | EJ840260 |
| Database: | ERIC |
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| Abstract: | 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. (Contains 4 tables.) |
|---|---|
| ISSN: | 0964-2633 |
| DOI: | 10.1111/j.1365-2788.2009.01176.x |
