Eating and feeding are not the same: caregivers’perceptions of gastrostomy feeding for children with cerebral palsy

Using a semi‐structured questionnaire, this descriptive study examined perceptions of feeding and adherence to feeding recommendations for caregivers (26 females; mean age 32y 7mo [SD 9.4y], range 20–59y) of children with cerebral palsy (CP) and a gastrostomy tube (GT). Children in the study (15 females, 11 males; mean age 4y 8mo [SD 3y 11mo], range 8mo‐16y) had had a GT in place for at least 1 month and been assessed at Level II ( n =2), Level III ( n =2), Level IV ( n =5), and Level V ( n =17) of the Gross Motor Function Classification System. A negative response was reported by 18 caregivers when the GT was recommended; however, 21 caregivers reported improvement in the children following placement. All children received formula through the GT that was adequate for complete nutrition, yet 14 caregivers gave other foods through the GT (e.g. juice, cereal, soup, or table food). Of the 17 children receiving oral feedings, meals were an unpleasant experience for over half. Of the remaining nine children, in spite of a strict nil by mouth recommendation by physicians, five continued to receive some oral feedings. Generally, caregivers perceived GT feeding as‘unnatural’. Understanding these perceptions will help clinicians to develop effective, family‐centered, patient‐appropriate intervention and adherence strategies for GT‐fed children with C P.