On this week’s episode of the Tube to Table podcast, Heidi and Jennifer are talking about the “where” of tube weaning. Where should tube weaning take place? What are the pros and cons to different weaning settings? They’ll answer all of your questions and talk through the important factors to consider when making a choice for your child’s tube wean. At Thrive, we believe children should be weaned at home whenever possible, but that may not always be possible for some families. Different settings include hospitals, clinics, or through remote treatment. This can be an overwhelming decision for many families, but this is one of the most important factors to really look into. This week’s episode will go through all of the upsides and downsides of different settings to help families make the decision for themselves.
At Thrive, we work with families through both remote and in-person services. For the in-person weaning programs, our therapists either travel to the family’s home or the family travels to one of our locations and stays in a home-like environment. The two main settings where a tube wean can take place is a clinic or the home environment. Although at Thrive we believe strongly that therapy should take place in the home environment, we wanted to break down the pros and cons to each setting so families can make a clear decision.
The clinic setting is one of the most common and traditional approaches to tube weaning. In most cases, these programs are referred to as “intensive feeding programs” rather than tube weaning. This could be in either an outpatient clinic where the family travels everyday or in the inpatient setting where the child lives at the hospital.
What are the downsides of this setting?
- These programs often focus on “getting” the child to eat a certain amount before making any changes to the tube feedings
- They are often missing a few pieces of the puzzle including:
- Parent involvement: In these programs, the child is in a room with the stranger as their family members are able to watch on the other side of the glass. There is a stranger feeding the child, not the caregiver. It could be days or weeks before the family is integrated into the program
- Too much focus on external rewards: The child is working for external rewards because that can get “quick results”
- Not a natural environment: Many times, these clinics can have more trauma or fear associated with them.
- Internal Rewards: Research shows that children should learn to eat with internal drives including hunger, curiosity, taste, etc. These are often overlooked in this setting and the focus is on rewards and behavioral-based feeding therapy.
- The family is considered as “extra” in this setting and they tend to add the family in later, but that may be too late. It is very difficult for parents to build carryover into the home setting after the program is complete.
- When the focus is about “getting” the child to eat more, it doesn’t help to build their autonomy.
It is very rare, but there may be a few cases where the clinic could feel like the best case scenario. We encourage families to look at these reasons and think about how this could be worked through in the home environment.
- It can feel safe with the medical professionals around. That is a great reason, but this is something that can be worked on while weaning at home. It is so important to have those medical conversations with your team about the safety parameters put into place. At Thrive, we focus on these conversations with the medical team prior to treatment to ensure the child’s safety.
- For some children, this can feel like a neutral environment since there may have been scary experiences at the home table. So how can you help that at home?
- Allow time for a break for children to take a step back from the table being “work” and help to rebuild that comfort around the mealtime environment.
Could there be downsides to being home?
It can feel overwhelming when there is so much happening around food in the home environment, especially with other children around. To be able to have all of the feelings around food unravel can be hard. At Thrive, our therapists are there to help coach families through that difficult time and encourage them to work through the difficult times both during and in between meals.
The Upsides of the Home Environment:
It is easier to have a long-term view at home when you can see how your child’s eating will play a role in your daily routine. The therapy can work around your work schedule, focus on siblings, and include other people in the therapy. Home is almost always best and we firmly believe that investing your time and energy while at home, although it may be difficult, will be better in the long term.
- Children should learn to eat in their natural environment. When a different location is added, then you have to generalize that to what your child learns somewhere else. That change can be very hard, and many families report that carryover is extremely difficult.
- The therapist is able to work through the stress and emotional moments with you while you feel safe in your daily routine at your home.
- The therapist is able to be there during meals, but also outside of meals to see how the stress impacts everyone, especially during meals.
The Middle Ground: Remote Weaning:
Remote weaning with support is something that we do at Thrive, when it is appropriate for the family and child. This involves a detailed assessment of the child’s relationship with food as well as where the parents are with helping to build their child’s trust and comfort around the mealtime. For some children, it can be doable and often times, helps the family by continuing their normal routine.
It is important to be aware that although it can be a suggestion, there are also many dangerous ways to do a remote wean. Weaning remotely WITHOUT the family as the focus, without coaching the families, and without having the child’s communication at the forefront is dangerous. If you don’t have all of those things with your program or therapist, it is important to look at other options. If you can achieve the safety parameters and make sure whoever you are working with is educated on the long-term research behind responsive feeding, then it may be a choice for your family.
Please reach out if you have any other specific questions about the location of tube weaning and why it is so important.