Community management of intellectual disabilities in Pakistan: a mixed methods study

Abstract

Background Pakistan has one of the highest reported rates of childhood intellectual disabilities in the world. Prevalence estimates vary from 19.1/1000 for serious intellectual disability to 65/1000 for mild intellectual disability Methods We surveyed carers of persons with intellectual disabilities (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 was 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 SRQ score 8.4; 95%CI 6.80 to 9.91). Home management consisted mainly of physical containment. Stigma associated with intellectual disability 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 intellectual disabilities. Conclusions Our findings suggest that there is significant delay in detection of intellectual disabilities 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.

The mediating effect of affective stigma between face concern and general mental health – The case of Chinese caregivers of children with intellectual disability

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A Cross-Cultural Comparison of Knowledge and Stigma Associated with Autism Spectrum Disorder Among College Students in Lebanon and the United States

“…CD). Given that government-supported services for individuals with ASD and other developmental disabilities are rarely available in middle to low-income regions Grinker et al 2011;Mirza et al 2009), it is not surprising that ASD-related services are scarce in Lebanon (reviewed in Daou 2014). Indeed, staff in ASD-specific schools in Lebanon often lack the training needed to provide evidence-based interventions.…”

Model for Service Delivery for Developmental Disorders in Low-Income Countries

“…9 Poor awareness of the condition in family members and front-line health providers leads to delay in recognition and appropriate management. 10 There is considerable stigma and discrimination affecting such children and their families. Specialist services are rare, concentrated in urban areas, and inaccessible to most.…”