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Original Research Articles

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

Authors:

Maria Zuurmond,

London School of Hygiene and Tropical Medicine, London, GB
About Maria

Maria Zuurmond is a Research Fellow (Childhood disability), International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, United Kingdom

 
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Ilias Mahmud ,

Qassim University, College of Public Health and Health Informatics, 8848 King Abdulaziz Rd, Bukayriah, Qassim, SA; The University of East Anglia, Norwich, GB
About Ilias

Dr. Ilias Mahmud is an Assistant Professor (public health) at Qassim University, College of Public Health and Health Informatics, Al-Qassim, Saudi Arabia. He was a Research Fellow, while conducting this study, at the International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, United Kingdom. 

 
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Sally Hartley

The University of East Anglia, Norwich, UK; The University of Sydney, AU
About Sally

Professor Sally Hartley, UEA Emeritus professor, Honorary professor at London School of Hygiene and Tropical Medicine, and Professor of CBR Sydney University. 

 
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Abstract

Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

How to Cite: Zuurmond, M., Mahmud, I. and Hartley, S., 2019. Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme. Disability, CBR & Inclusive Development, 29(4), pp.25–42. DOI: http://doi.org/10.5463/dcid.v29i4.598
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Published on 14 May 2019.

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