Long‐term implications of a multidisciplinary tube‐weaning program: Parental perspectives

Abstract

Children who are unable to eat and drink orally require temporary or permanent enteral nutritional support via tube feeding. The objective was to describe a weaning program held at a children's rehabilitation hospital and to review the long‐term outcomes of the transition from tube nutrition to oral feeding.The parents of 82 children who took part in the ALYN intervention program from 2011 to 2022 were requested to participate in a telephone survey to learn about their child's status related to eating, education, social wellbeing, and overall health. They also provided feedback concerning their experience with the tube‐weaning program and their current reliance on support for eating‐related issues.The parents of 35 (39%) children responded. Their mean ± SD age at the time of treatment were 2.1 ± 1.76, and the mean ± SD age at the time of the survey 8.85 ± 3.96 years. Their mean current zBMI is −0.7. Overall, parents were very satisfied with the child's eating (4.7 out of 5) ± 0.7, and few reported that the child's eating affected the family mealtime routine (2.1 out of 5) ± 1.3. The children's age at weaning was significantly correlated with parental reports of concern with the child's current eating ability, with younger ages at weaning associated with lower parental concern.The data demonstrated that despite the complexity of the participants, most children succeed in achieving long‐term independent eating, good nutritional status, and social participation around mealtimes.