Experiences of Parents and Caregivers of Children Who Underwent Gastrostomy Tube Insertion

Abstract

Gastrostomy feeding is a route of enteral nutrition for children with feeding difficulties. This study investigated caregiver experiences of the transition to gastrostomy feeding. A survey was administered to caregivers of children <18 years in a major pediatric center in Ireland. Experiences of decision-making, support, and adjusting to tube feeding were examined. Seventy-six caregivers participated. Median satisfaction with the information provided by the hospital was high. Almost half (48%) spoke to another caregiver of a child with a gastrostomy prior to their own child's gastrostomy insertion and most (88%) felt reassured by this. Concerns following insertion included managing the tube and their child's oral intake and feelings about the tube. The oral intake of 83% of children who had some intake prior to gastrostomy insertion did not change or increased following insertion. Most (89%) would make the same decision to insert the tube. Feelings associated with the transition included relief and stress. Gastrostomy tube insertion presents logistical and psychosocial challenges for caregivers. Peer support from other caregivers may alleviate some of these challenges.