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

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

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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.

Disability, poverty and education: perceived barriers and (dis)connections in rural Guatemala

GRECH, Shaun
2014

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This paper engages with the impacts of disability on the formal education of disabled people in poor rural areas. Reporting on qualitative ethnographic work in Guatemala, adults with a physical impairment provided retrospective accounts of their educational trajectories. Findings highlight multidimensional and dynamic barriers to education confronted by all poor people, but which often intensified for disabled people. These met a host of disability-specific barriers cutting across social, physical, economic, political and personal spheres. Findings report how in the face of more persistent basic needs and costs, education had a high opportunity cost, and often could not be sustained. Disabled parents also came to prioritise the education of their children translating into limited or no school re-entry for these parents. The paper concludes that engagement with temporal and context specific (but fluid) spaces of poverty is necessary, because it is within these spaces that disability and education are constructed and lived, and within and through which barriers emerge. Cross-sectoral efforts are needed, addressing educational barriers for all poor people indiscriminately, while targeting families to remove obstacles to other basic needs competing with education. Critically, efforts are needed to ensure that educational outcomes are linked to immediate contributions to the family economy and welfare through work.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

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