title: Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support.
abstract: This was a qualitative research study of parental perceptions of gastrostomy feeding before surgery using an in-depth interview in the parental home to examine the factors parents consider when gastrostomy feeding is recommended and to identify the need for support. Participants were a subgroup of families taking part in a larger research study evaluating gastrostomy placement in children with severe neurodevelopmental disabilities at a major paediatric centre in the UK between 1998 and 2000. Parents of 22 children (13 males, nine females; mean age 4 years 8 months [SD 3 years 6 months]; age range 1 year 1 month to 13 years 3 months) were interviewed. Categories of disability were: cerebral palsy (n=10), a syndrome of chromosomal or genetic origin (n=10), and unconfirmed diagnoses (n=2). Thirteen children were recommended for a gastrostomy and seven were recommended for a gastrostomy with an antireflux procedure. Four families were undecided about surgery at the time of the interview, two of whom went ahead with the procedure some time later. Parental accounts of oral and tube feeding were both contradictory and ambivalent. Concerns about the loss of oral feeding, which was regarded as having a range of psychosocial effects for the child and family, were raised. Both oral and tube feeding have multiple meanings for parents and signify more than obtaining an adequate nutritional intake. The need for additional information about the risks and benefits of gastrostomy and how tube feeding fits into the context of everyday life were dominant themes. The biomedical emphasis on health and weight-gains may fail to reflect parental concerns about tube and oral feeding. There is a need for greater practical and emotional support for families feeding children with severe disabilities.
authors.affiliation: Institute of Child Health, London, UK. g.craig@ucl.ac.uk
authors.forename: Gillian M
authors.initials: GM
authors.lastname: Craig
authors.forename: Graham
authors.initials: G
authors.lastname: Scambler
authors.forename: Lewis
authors.initials: L
authors.lastname: Spitz
mesh_terms: D001921:Brain / Q000503:physiopathology*; D002648:Child; D002675:Child, Preschool; D002658:Developmental Disabilities / Q000503:physiopathology*; D004750:Enteral Nutrition / Q000379:methods*; D005260:Female; D005764:Gastroesophageal Reflux / Q000517:prevention & control; D005774:Gastrostomy / Q000379:methods*; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents; D012944:Social Support