This project was a World Cerebral Palsy Day Award winner in 2017. Enter your project or campaign in the 2018 Awards!
The team behind the Bangladesh Cerebral Palsy Register (BCPR) set out to develop a national database to facilitate studies on the prevalence, severity, causes, associated impairments and risk factors for cerebral palsy in Bangladesh.
“Good quality data is very important,” says clinician and researcher, Dr Gulam Khandaker.
To date, the BCPR project has collected data on 1108 children with cerebral palsy in the rural sub-district of Shahjadpur.
The data collected will help inform ongoing research and service development in various areas including quality of life, nutritional status and disability, impacts of early diagnosis and intervention programs.
However, the BCPR project has evolved into so much more than just data collection.
Incredibly, the project team have also developed a model for community-based early intervention and rehabilitation services for children with cerebral palsy in targeted communities.
How the vision grew
Their vision was simple: To make the lives of children with cerebral palsy better.
Vision is not what you can see is there, vision is the ability to see what it could be! However, when you actually follow your vision and start working to achieve it, through the journey you discover there is always more beyond your vision. That’s exactly happened to us as a team! – Professor Mohammad Muhit, CSF Global Bangladesh.
Since the project started out as a process to collect information on the burden of disease, there was no budget for services. However when they started their research, they found that most children had no support services beyond family.
“We know, and believe, that research without service is unethical,” says Professor Muhit.
The team also knew they would need social, as well as medical interventions, to challenge stigma and improve services for people living with cerebral palsy in Bangladesh.
As their vision grew, they team took a systematic problem-focused approach to the project. They looked at the different levels of intervention on which they would need to focus.
On a personal level, they needed to first identify the people living with cerebral palsy in Bangladesh.
To do this they enlisted 900 volunteers, including non-government organisation (NGO) workers, teachers and local council members who became Key Informants that helped identify and locate people with cerebral palsy.
Having Key Informants enabled information to be gathered and the assessment of medical, nutritional and rehabilitation needs to be undertaken.
On a family level, the project facilitates linkages with services and provides education on prognosis and management.
On a community level, the focus is education around cerebral palsy to encourage inclusivity and reduce stigma.
On a policy level, the project aims to use the data collected to highlight lack of services and current conditions, to show what needs to be done to support people living with cerebral palsy.
“The magnitude of the problem is beyond the capacity of any single organisation. Partnership is the only way to have a national impact,” says Professor Muhit.
Having strong relationships with organisations in both Bangladesh and Australia has been integral to the project’s success.
Key partners include:
- Child Sight Foundation (CSF) Global
- Cerebral Palsy Alliance
- Wheelchairs for Kids, and
- TNS Solutions.
The team realised the importance of creating an environment where local partners can contribute to finding creative solutions as well as implementation.
Thirteen local NGOs have undertaken training sessions to build partnerships and share knowledge. They also play a crucial role in distributing and maintaining wheelchairs.
“This partnership will not only expand our coverage but also will make it more sustainable and locally acceptable and accessible,” stresses Professor Muhit.
To measure the success of the project, Dr Khandaker says it is important to compartmentalize the different aspects.
The actual BCPR itself is evaluated by the quality of the data and how it is analysed and utilized. There are new findings from the register being presented all over the world, highlighting the burden and prevalence of cerebral palsy.
They have developed key infrastructure for a secure database online that can be utilised by hospitals, health care workers, NGOs and governments for service delivery and research.
Other impressive direct outcomes from the work around the BCPR project include:
- The distribution of 664 wheelchairs and the construction of 150 wheelchair access ramps at schools, homes and hospitals
- An assistive device center has also been established to manufacture wheelchairs locally, which will be a great benefit to recipients as well as the local community
- 4 community-based early intervention centers have been set up to provide rehabilitation services among children with cerebral palsy in rural communities
- 140 children with cerebral palsy who also have epilepsy have been made part of a community-based epilepsy treatment program
- Specialized training delivered to key local clinicians and therapists regarding assessment and rehabilitative care for children with cerebral palsy.
The team revels in the many heart-warming success stories resulting from the work of the project. Such stories children with cerebral palsy who can now walk or talk after receiving early interventions or rehabilitative care.
Where to from here?
According to Dr Khandaker, the ultimate dream is a global cerebral palsy register with a global vision. However this will take time and while the project team have good partners in Bangladesh, they are still working on gaining momentum nationally.
Many other countries are interested in their work, including Zimbabwe, Vietnam, Sri-Lanka and Kenya.
In fact, the team are currently in Indonesia on a small, remote island call Sumba, where they have already identified and assessed 140 children with cerebral palsy and organised 80 wheelchairs.
The next step in the plan is to develop a rehabilitation center for children with cerebral palsy in Indonesia.