title: 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 (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.
authors.affiliation: Human Development Research Foundation, Islamabad, Pakistan.
authors.forename: I
authors.initials: I
authors.lastname: Mirza
authors.forename: A
authors.initials: A
authors.lastname: Tareen
authors.forename: L L
authors.initials: LL
authors.lastname: Davidson
authors.forename: A
authors.initials: A
authors.lastname: Rahman
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003156:Community Mental Health Services / Q000600:supply & distribution; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003469:Culture; D003906:Developing Countries; D018479:Early Intervention, Educational / Q000600:supply & distribution; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D008607:Intellectual Disability / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology / Q000534:rehabilitation*; D007514:Islam; D008273:Magic; D008297:Male; D010154:Pakistan; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data; D011287:Prejudice; D012069:Religion and Psychology; D012424:Rural Population / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D055815:Young Adult