Perceptions of caregivers following percutaneous endoscopic gastrostomy in children with congenitally malformed hearts

Abstract

While the usefulness of percutaneous endoscopic gastrostomy is clearly established in the nutritional support of children with neurodisability, the role in substituting for prolonged nasogastric feeding in children with congenitally malformed hearts is a relatively recent development. There are no previously published experiences of the perceptions of parents or those providing care following the insertion of percutaneous endoscopic gastrostomy in such children. Descriptive qualitative survey of parental perceptions using a semi-structured questionnaire. We obtained completed 27 point semi-structured questionnaires from 38 providers of care for children with congenitally malformed hearts. Time taken to feed their children reduced significantly after the percutaneous endoscopic gastrostomy, from 30 to 60 minutes previously to 15 minutes subsequently. The frequency of feeding also reduced significantly, from 6 times a day to 4 to 5 times a day. Those providing care perceived significant reductions in pre-procedural symptoms, the ease of administering medications, and noted an enhanced level of happiness in their children. Of those providing care, 97% were highly satisfied with the procedure, with 15 parents (40%) wishing that the operation was done earlier, while the remainder considered it had been done at the appropriate time. Those caring for children with congenitally malformed hearts perceive significant improvements in the symptoms, wellbeing, and ease of administering medication for their children after percutaneous endoscopic gastrostomy. Of the group, 97% regarded the procedure as the appropriate means of assisting nutritional support.