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Tube dependence (TD) is an unintended state of temporary tube feeding/enteral nutrition support which occurs when the nutritional goals have been achieved and/or there is no explicit medical or other reason to have the child remain dependent on tube feeds. All attempts to stimulate and encourage oral feeding don’t manage to achieve the transition from exclusive enteral to sustaining natural and oral feeding. TD affects the child on a physical, developmental and social level and can lead affected families into social isolation. The following text analyzes the problem and introduces a tube weaning program.
The number of enteral fed infants and children with a nasogastric tube, gastrostomy or jejunostomy has increased over the past 20 years. Artificial feeding is useful and appropriate in some situations. If there is a specific medical indication it saves lives! But an international consensus is that the transition from tube to oral feeding (= tube weaning) should be established as soon as possible and when tube feeding is no longer appropriate. There are so many children relying on a temporary feeding tube without any medical intention or cause anymore!
Tube dependency is known as “an unintended result of long-term tube feeding in children”. The effects of tube dependence can be devastating for the whole family and children often get developmentally delayed.
Exit-Strategy for tube feeding
Tubes should never be put in without a plan to take them out! The plan should include time, method and a specialized team for weaning. It is clear that managing tube weaning should be in the hand of experts to avoid devastating situations for the whole family and their child.
The Graz program
Weaning children effectively off their feeding tube requires significant interdisciplinary application of know-how. There are different weaning approaches worldwide.
One well known tube weaning program is the so-called “Graz tube weaning program”. The program is helping children with early eating behavior disorders, especially children who developed a feeding tube dependency. These children have never learned how to take food orally. Therefore they have to learn how to eat in a self-regulated and sufficient manner while simultaneously weaning them off the feeding tube. Two core areas have been identified:
- Let the child be hungry (somatic approach)
- Increase autonomy (psychological)
The concept of self regulation wants the children, who are equipped with biorhythms regulating basic things from birth on, starting to solve the balance of increasing oral intake on their own. That includes that caregivers start to trust the child´s capacity to be able to do things in appropriate time by him/herself, regulating hunger and satiety.
This intensive process takes about 3-4 weeks and will be guided and maintained by a team of specialists and is offered in the form of our Netcoaching program. In communication with the parents the team try to find a specific treatment plan for the entire tube weaning process for each child and its care giving system.
Understanding the child as the key
The understanding of the child´s perspective is the key! We have to find a path to the child´s personality. The sensory and motor abilities have to get stimulated – the child will show the direction and lead its individual treatment!