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Around 1.4 million children under age 15 are blind. Yet approximately half of all childhood blindness can be avoided by treating diseases early and by correcting abnormalities at birth such as cataract and glaucoma. (WHO)
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The Key Informant Child Disability Project in Bangladesh and Pakistan

A man examining a child's teeth - her mother is wearing a niqab
This was taken in Shajadpur, Bangladesh in November 2008 at a KIM (Key Informant Method) Medical Assessment Camp. The child in the photo is being examined by a paediatrician in the presence of her mother (and presumably sibling!). Credits are ICED/ICEH, LSHTM.

CBM, together with the International Centre for Evidence in Disability (ICED), conducted research on identifying children with disabilities in Bangladesh and Pakistan from 2008 to 2012. The study went beyond pure identification but also mapped available services for the children and highlighted service gaps for future decision-making and planning. From this, the needs and potentials of children with disabilities in the study countries are better understood, and respective activities to improve their well-being can be initiated based on the evidence found.

Study Background

Door-to-door surveys are often used to identify children with disabilities in developing countries – either as beneficiaries for immediate interventions, or to estimate numbers (e.g. children with disabilities per thousand children) and plan services. These can be costly and time consuming, and there is often a lack of comparability between studies and methods/definitions used. In line with international recommendations
to collect appropriate and comparable statistical data on disability, so as to enable governments and other stakeholders to formulate suitable policies and programs, investing in the development of cost effective and functional methods is imperative.¹ ²

Study purpose

The Key Informant Method (KIM) has previously been tested by CBM, The London School of Hygiene and Tropical Medicine (LSHTM) and others, and found to be a valid, method for the identification of children with severe visual impairment and blindness in countries including Bangladesh, using community volunteers in the place of a (more costly) door-to-door survey.

The current study set out to expand this and test whether voluntary, community-level Key Informants (KIs) in three districts in Bangladesh and one in Pakistan could be trained to effectively identify children with moderate or severe physical impairments, sensory impairments (visual and hearing) or epilepsy, and if so whether this process could be used to assess prevalence³ and plan appropriate referral services for children meeting these criteria. The study also undertook a large door-to-door survey in Bangladesh to compare estimates produced using the different
methods. A door-to-door survey was not possible in Pakistan.

Key findings

  1. KIM identified almost 100% of children with severe visual impairments, significant physical impairments and epilepsy in Bangladesh
  2. KIM was less effective at identifying children with hearing impairments in Bangladesh
  3. Key Informants in Pakistan identified approximately 75% of all children with targeted impairments and conditions, with more evidence needed
  4. Key Informants showed interest in maintaining a long-term role as community disability advocates (piloted Community Module in Bangladesh on further training, coaching and mentoring of Key Informants)
  5. 57% of children with targeted impairments/health conditions in Bangladesh, and 83% of those in Pakistan had never previously received rehabilitative support or services
  6. KIM is a more cost effective method of identifying children with targeted impairments and health conditions than a door-to-door survey covering a population of the same size
  7. Promising findings from KIM in Bangladesh suggest the potential benefit of using KIM in other settings to identify children with targeted impairments and health conditions

Study direct benefits

  1. Training of over 1,500 community KIs in Bangladesh and 500 in Pakistan (approximately one KI per village across a defined population) using flip charts, specific messages about different impairments and health conditions, and general messages about disability
  2. Identification and clinical screening of almost 4,000 children in Bangladesh and 1,500 in Pakistan by comprehensive medical team
  3. Screening of additional 8,000 children in Bangladesh via door-to-door survey for comparison
  4. Provision of free medical/rehabilitative intervention to 3,000 children in Bangladesh and Pakistan
  5. Mapping of referral services available and gaps existing in three districts of Bangladesh and one in Pakistan
  6. Development of Community Module to equip 300 Bangladesh KIs with further knowledge and capacity to link communities up with referral services and further sensitise communities
  7. Parent Group Training for caregivers of children with Cerebral Palsy in Bangladesh (consequent project)
³ Prevalence refers to the proportion of the total child population found to have the targeted conditions.

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