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Feeding difficulties in children with cerebral palsy: low-cost caregiver training in Dhaka, Bangladesh

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Adams MS, Khan NZ, Begum SA, Wirz SL, Hesketh T, Pring TR.
Child Care Health and Development, November 2011

Abstract

BACKGROUND:

The majority of children with cerebral palsy have feeding difficulties, which, if not managed, result in stressful mealtimes, chronic malnutrition, respiratory disease, reduced quality of life for caregiver and child, and early death. In well-resourced countries, high- and low-cost medical interventions, ranging from gastrostomy tube feeding to caregiver training, are available. In resource-poor countries such as Bangladesh, the former is not viable and the latter is both scarce and its effectiveness not properly evaluated. The aim of this study was to evaluate the effectiveness of a low-cost, low-technology intervention to improve the feeding practices of carers of children with moderate-severe cerebral palsy and feeding difficulties in Bangladesh.

METHODS:

An opportunistic sample of 37 caregivers and their children aged 1-11 years were invited to a six-session training programme following an initial feeding assessment with brief advice. During home visits, pre- and post-measures of nutritional status, chest health and feeding-related stress were taken and feeding practices were observed. A control phase was evaluated for 20 of the participant pairs following initial assessment with advice, while awaiting full training.

RESULTS:

A minimum of four training sessions showed significant improvements in the children’s respiratory health (P = 0.005), cooperation during mealtimes (P = 0.003) and overall mood (P < 0.001). Improvements in growth were inconsistent. Dramatic reductions were observed in caregiver stress (P < 0.001). A significant difference in the outcomes following advice only compared with advice plus training was also observed.

CONCLUSIONS:

In situations of poverty, compliance is restricted by lack of education, finances and time. Nonetheless, carers with minimal formal education, living in conditions of extreme poverty were able to change feeding practices after a short, low-cost training intervention, with highly positive consequences. The availability of affordable food supplementation for this population, however, requires urgent attention.

Copyright © 1999–2013 John Wiley & Sons, Inc.

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M.S.Adams: Additional Information

This study was designed in response to the immense lack of awareness of the widespread malnutrition that exists amongst children with disabilities around the world, in part due to the disability itself and in part, due to people’s attitudes to these children’s nutritional needs. It is often believed that it is normal for children with disabilities to be underweight and that they need less nutrition than other members of the family. In truth, many of these children are unable to meet their nutritional needs due to their physical limitations with eating and self-feeding, which can be compensated for in many different ways, as shown in this study, thus enabling to them to live longer and more healthily, to development their skills to their maximum potential and improve the well-being of the child and their family. Since completing this study, the author has been involved in developing further training tools for disability workers and families living in under-resourced settings, which not only address eating and drinking but other aspects of functional skill within daily living, some of which are due to be loaded onto digitized platforms (eg. electronic tablets) for ease of use in the community. She is also member of various groups addressing the nutritional needs of disabled children around the world. For further information, advice or training on any of the above, please contact the author at / .