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

Objectives: 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.

Methods: 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.

Results: 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.

Conclusions: 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.