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The parents of children with severe cerebral palsy often worry about their child’s nutrition and general health. Feeding through a gastrostomy tube may improve the child’s nutrition and make life easier for the parents. Even though some are at first resistant to, or afraid of, the idea few parents regret agreeing to a gastrostomy. Now research in Oxford, Manchester, and Watford (
) has shown that there are significant improvements in the quality of life of carers after beginning gastrostomy tube feeding. The study included the main carers of 57 children who were severely disabled (53 unable to use their hands to feed themselves, 50 unable to sit independently) with cerebral palsy (43 with spastic quadriplegia). The children’s mean age was 4 years and 4 months (range 5 months to 17 years) and 44 of the carers were the child’s mother (four fathers, two grandmothers, and seven foster parents). The children all had their medical care provided by specialist multidisciplinary teams and the domestic carers were recruited to the study after the children had been referred to a paediatric surgeon for gastrostomy tube implacement. Quality of life was measured, using the UK Short-Form 36 version II (SF-36 II), at baseline (before gastrostomy), at 6 months, and at 12 months. Over the first 6 months there were substantial improvements in SF-36 II scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality. Between 6 and 12 months there were further improvements in mental health, social functioning, and energy/vitality scores. Although most carers improved, some did not and at 12 months one third of respondents had worse scores for energy/vitality, and a quarter for social functioning, compared with baseline. For most domains of the SF-36 II carers had significantly worse scores than a normal population at baseline but by 12 months their scores were not significantly different from the population norm (only the scores for role limitations due to emotional problems remained significantly worse than in the general population at 12 months). There were significant improvements in daily duration of feeding times (from 2.5 hours to 1 hour), ease of drug administration, and parental concerns over nutritional status.
For the carers of children with severe cerebral palsy and feeding difficulties gastrostomy tube feeding may result in significant improvements in quality of life.
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