title: Caregivers' perceptions following gastrostomy in severely disabled children with feeding problems.
abstract: Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is significant aspiration during feeding, or if feeding is very distressing. To find out if caregivers were happy with the outcome of gastrostomy (with fundoplication, when indicated), a 35-item questionnaire was developed and sent to 38 of them. Twenty-nine replies were received and appeared to be representative of the whole group. Coughing, choking, and vomiting improved in most cases. Weight gain improved in all in whom it had been a problem. In the majority, it became easier to give the children their medications although control of epilepsy was unchanged overall. Time spent feeding the child was reduced and many caregivers had more time to devote to other children and themselves. Only one parent regretted the operation. In children with severe disability and feeding problems, a gastrostomy (with fundoplication if there is significant reflux) can reduce symptoms of vomiting, coughing, and choking, help growth and improve quality of life in the child, when patients are properly selected.
authors.affiliation: Paediatric Gastroenterology, Booth Hall Children's Hospital, Manchester, UK.
authors.forename: R
authors.initials: R
authors.lastname: Tawfik
authors.forename: A
authors.initials: A
authors.lastname: Dickson
authors.forename: M
authors.initials: M
authors.lastname: Clarke
authors.forename: A G
authors.initials: AG
authors.lastname: Thomas
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D002658:Developmental Disabilities / Q000150:complications*; D001068:Feeding and Eating Disorders / Q000209:etiology / Q000628:therapy*; D005260:Female; D018662:Fundoplication; D005774:Gastrostomy; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D013315:Stress, Psychological / Q000523:psychology; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome