Parents conflicted about use of feeding tubes in children with neurologic disabilities

For people of all ages, mealtime is an important part of every day. It is not only a basic nutritional need, but also represents a social need, with food customs varying across religions, cultures, ethnicities and classes. While eating can be viewed as an enjoyable and social activity, for children with complex chronic conditions eating can be a daily struggle. To ensure proper nourishment, gastrostomy tube insertion – also known as feeding tubes – is common and often recommended for these children.

In a review led by Dr. Sanjay Mahant, lead author of this study and Staff Paediatrician at The Hospital for Sick Children (SickKids), researchers acknowledge that the decision to replace feeding by mouth with feeding tubes can be a very difficult decision for parents and caregivers. They found that the primary conflict was based on the family’s values and their interpretation of feeding. Recognizing this decisional conflict, Mahant and his team developed a framework that aims to support and improve parental decision-making around gastrostomy-feeding tube insertion. The review was published in the June edition of Pediatrics.

“While gastrostomy-feeding has been shown to be effective in improving nutrition, administering medication and making feeding easier for parents of children with neurologic disabilities,” says Mahant, “for some caregivers it represents disability, loss of normality and a disruption of maternal nurturing.”

The goal of the review was to understand the decision-making experiences and perspective of the parents around gastrostomy-feeding tubes. The investigators hope to improve parents’ experience through information-sharing and education, more opportunities to gain knowledge from other families in similar situations, and support from health-care professionals.

The review showed that the decision-making process was one of stress, uncertainty and conflict for the parents. “We found that the significance of feeding was much more complicated than simply a means to provide nutrition and maintain an adequate weight,” says Mahant. “Understanding this internal conflict is important in improving the decision-making process for both parents and health-care providers.”

This research provides recommendations for clinicians when communicating about feeding tubes with families.  It highlights the importance of explaining health benefits and potential complications, clarifying parental expectations and fears, and providing the appropriate time to discuss the situation.