Mothers’ voice: a qualitative study on feeding children with cerebral palsy

Background  Around one third of children with cerebral palsy have severe difficulty eating and drinking and are at risk of undernourishment. A gastrostomy feeding tube may be offered as a way of providing nourishment as it bypasses the main physical difficulties. For the families feeding and concerns about the method of feeding affect many areas of their daily life but we know little about what the experience is actually like. This study aimed to explore mothers’ experience of feeding children with cerebral palsy. Methods  Ten principal carers for children with cerebral palsy and severe eating difficulty were interviewed. Four of the children, one girl and three boys aged 2.5 to 4.5 years were being fed solely by mouth and six children, three girls and three boys, aged 4.5 years to 15 years and 10 months, were fed via a gastrostomy feeding tube. Long, loosely structured tape recorded interviews were transcribed and manually analysed using a phenomenological approach. This involved extracting and coding each relevant phrase that contained meaning; then through sequential stages of ordering and reduction into themes the invariant meanings were uncovered. The transcripts were analysed in two groups, oral and gastrostomy feeding, in an identical manner. Results  Phenomenological analysis resulted in two prose accounts that described in depth the essence of the experience. The accounts were mutually informative. Both groups treasured feeding by mouth suggesting that support for oral feeding should be given a higher priority. The accounts explained why some professional encounters added to families’ stress and why consistency of care is so important. The study gives insight about the kinds of support families find helpful. Conclusions  This study should help those involved to understand the families’ predicament better and so make a contribution towards providing more appropriate support.