title: Mothers' experiences caring for children with disabilities who require a gastrostomy tube.
abstract: In this qualitative study, mothers' experiences of feeding children with severe disabilities by a gastrostomy tube are described. Twelve mothers each participated in one, open-ended, home interview. Mothers gave detailed accounts of their activities and the tremendous stress involved in feeding the children. They described spending enormous time and energy seeking confirmation of the feeding problem and devising extraordinary practices to ensure the child's survival before "giving in" to the gastrostomy tube. Following gastrostomy tube insertion, they initially felt relief and disappointment, before customizing feeding and moving on. Mothers' suggestions for improving professional services are discussed along with implication for practice and research.
authors.affiliation: Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: K
authors.initials: K
authors.lastname: Spalding
authors.forename: P
authors.initials: P
authors.lastname: McKeever
mesh_terms: D000328:Adult; D000739:Anecdotes as Topic; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000451:nursing* / Q000523:psychology*; D019988:Children with Disabilities / Q000523:psychology*; D004750:Enteral Nutrition / Q000523:psychology*; D005260:Female; D005774:Gastrostomy; D006801:Humans; D008297:Male; D008425:Maternal Behavior; D008875:Middle Aged; D009034:Mother-Child Relations; D010371:Pediatric Nursing; D012648:Self Care