Adams, M.S.; (2009) The management of feeding difficulties in children with cerebral palsy in Bangladesh. Doctoral thesis , UCL (University College London).

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Abstract

The majority of children with Cerebral Palsy (CP) have feeding difficulties, which result in chronic malnutrition and respiratory disease, reducing quality of life for caregiver and child, and causing early child mortality. In well-resourced countries, high and low-tech medical interventions, ranging from gastrostomy tube-feeding to parent training, are available. In Bangladesh the former is not viable and the latter is both scarce and its effectiveness not evaluated. The study aimed to evaluate the effectiveness of a training programme to improve the feeding practices of carers of children with CP, observing the impact on level of nutritional intake, risk of aspiration and distress caused to both during feeding. Thirty-seven caregivers and their children aged 1-11 with moderate-severe CP and feeding difficulties were invited to a six-session training programme. Pre and post measures (quantitative and qualitative) were taken during home visits in addition to giving brief advice. A control phase was evaluated for 12 of the participant pairs whilst awaiting training. A minimum of four training sessions was successful in significantly improving children’s nutritional intake and chest health, maximising independence in feeding, improving the experience of mealtimes for both child and caregiver, decreasing caregiver stress regarding their child’s feeding difficulties and improving child levels of cooperation. Catch-up growth was observed in 26% of the children. A significant difference in the outcomes between advice only and groups was observed. In conclusion, carers in Bangladesh, who have minimal formal education and live in abject poverty are able to change care-giving practices significantly after four training sessions, with positive consequences for both child and caregiver. Methods of providing affordable food supplementation need to be investigated and further steps must to be taken to lobby policy-makers in order to ensure that services have the motivation and capacity to address this area of need.

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