Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy

Abstract

The aim of this prospective cohort study was to evaluate the impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy (CP). Short-Form 36 version II was used to measure quality of life in carers of 57 Caucasian children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) six and 12 months after insertion of a gastrostomy tube. Responses were calibrated against a normative dataset (Oxford Healthy Life Survey III). Six months after gastrostomy feeding was started, a substantial rise in mean domain scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality were observed. At 12 months after gastrostomy placement, carers reported significant improvements in social functioning, mental health, energy/vitality (mean increase >9.8 points; p<0.03), and in general health perception (mean increase 6.35 points; p=0.045) compared with results at baseline. Moreover, the values obtained for these domains at 12 months were not significantly different from the normal reference standard. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child's nutritional status. This study has demonstrated a significant, measurable improvement in the quality of life of carers after insertion of a gastrostomy feeding tube.

Nutritional management of children with cerebral palsy: a practical guide

“…Some caregivers spend many hours a day trying to feed their disabled child and quality of life in parents of children with CP may be significantly impaired. 11 Feeding should not be stressful for caregiver or child. Ideally, the child and family will find feeding to be pleasurable.…”

Quality of life of children with neurological impairment who receive a fundoplication for gastroesophageal reflux disease

“…14,19 -21 Few case series of children with neurological impairment who have had a fundoplication have addressed child and caregiver quality of life following either a fundoplication or placement of a feeding tube. [22][23][24] In their study of 16 patients who had a fundoplication and gastrostomy tube placed, Tawfik et al found improvements in children's happiness, ease of giving medicines, and time to devote to other children. Sullivan et al found improvement in caregiver quality of life following placement of a gastrostomy tube in a child; however, they did not specifically identify those children who had been treated with a fundoplication.…”

Psychosocial aspects of feeding children with neurodisability

“…They generally worry less about their child's nutrition with the knowledge that they are getting sufficient via the tube. 12 Despite the benefits, the suggestion of a gastrostomy feeding tube (GFT) can generate opposition for some families. 13,14 For others, however, an alternative to feeding by mouth may come as a welcome relief.…”