The country of Bangladesh faces limited resources, a high burden of childhood diseases and disabilities, and a lack of awareness about cerebral palsy (CP) and other disabilities.
With 50 million children across the country, many with undiagnosed and treated disabilities, the need for a comprehensive public health infrastructure to tackle these problems is clear.
Dr Gulam Khandaker, a clinician and public health researcher of the Sydney Medical School at the University of Sydney, is addressing this very difficult set of challenges by working to create a Bangladesh Cerebral Palsy Register.
“Currently, there is no accurate data on children with CP in Bangladesh. What I am trying to do is create a registry of all these children and their problems. I then refer them to the appropriate level of support they will need”, Khandaker said.
In 2014, Dr Khandaker received a grant from the Cerebral Palsy Alliance Research Foundation to establish the Register.
“At the national level, the main challenge is that there is no population based data available on the prevalence, causes and types of CP among children in Bangladesh. This lack of evidence and data for policy makers and planners limits the national capacity to develop a plan of action on providing health, rehabilitation and educational services for children with CP”, Dr Khandaker explained.
“To address this we are developing a population based register of children with CP in Bangladesh, which would the first of its kind in a low and middle income country”, he said.
The Register commenced in January 2015 using the existing infrastructure of the Australian Cerebral Palsy Register and with implementing partner CSF Global, Bangladesh. So far, 749 children are currently registered with the majority having never previously received any assistive devices or rehabilitation services.
An additional grant from the Cerebral Palsy Alliance Research Foundation in partnership with TNA Solutions and Wheelchairs for Kids (WFK) has delivered 342 free wheelchairs to many of these registered children.
Hope for a better future for children with CP in Bangladesh is the driving force behind Dr Khandaker’s work. He plans to go beyond the Register to create a better system for early detection and referral, and also better training of health care professionals.
“The vast majority of children in Bangladesh live in rural areas where there are no trained personnel to identify and assess disability in children. Parents usually do not have access to medical and rehabilitation services for these children. Our main challenge is to develop a sustainable, locally appropriate and effective system for early detection and prompt referral of children with disabilities in rural Bangladesh”, Dr Khandaker said.
“To address these challenges we are trying to train local community volunteers (key informants) through a simple and effective training on easily recognisable signs of CP in children.”
“We are also trying to develop a community based referral system from remote villages to trained health care workers by bridging the gap through these trained volunteer key informants,” he said.
The end goal is a large one – he hopes to ultimately create a sustainable public health infrastructure for children with CP and their parents.
“Back in 2012 we conducted a study on causes of childhood disability in Bangladesh. The number one cause of childhood disability in Bangladesh was CP”, Dr Khandaker said.
“Our long-term goal is to change the lives of children with CP and their families in rural Bangladesh. To achieve that we have to ensure that these children receives medical treatment, rehabilitation, education and their parents become empowered to care for their children in an effective way.”
“Ultimately, we want these children to have equal rights and be included in the mainstream society as equal citizens.”
- Cerebral Palsy Registers (World CP Day)
- CSF Global
- Cerebral Palsy Alliance Research Foundation
- Australian Cerebral Palsy Register
- Sydney Medical School at the University of Sydney
- Mark Isaacs, Pacific Standard: Cerebral Palsy and the Hidden Children of Bangladesh
- Mark Isaacs, Pacific Standard: Treating Cerebral Palsy in Rural Bangladesh
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