Tube Feeding Support for Families
Families of tube-fed children often face unique issues not commonly experienced experienced by most parents and caregivers. Many parents find it extremely helpful to discuss the challenges and joys of tube feeding with others who have had similar experiences. Whether run by parents of tube-fed children, non-profit organizations or healthcare professionals, support groups offer an environment conducive to posing questions and sharing useful information.
How to Find a Support Group
Contact your local children’s hospital. Many facilities host organized support groups that focus on particular diseases and conditions, such as celiac disease or cerebral palsy.
Look online. Busy parents and caregivers can’t always get to local support groups in person. Online forums serve as a reasonable substitute. Below, are a few online groups.
- Feeding Tube Awareness Foundation http://www.feedingtubeawareness.com/ works to raise positive awareness of tube feeding and to help parents obtain the practical knowledge and support they need. They also started Feeding Tube Awareness Week, dedicated to increasing visibility and acceptance of tube feeding in our communities. It takes place annually during the second week of February. Their Facebook page is touted as the largest online support group for tube feeding in the world.
- The Oley Foundation http://www.oley.org/ provides support to home tube-fed adults and children in the form of newsletters, a video library, an online community forum, regional support groups, an annual consumer conference and more.
- Feeding Matters https://www.feedingmatters.org/ hosts a parent-to-parent online forum to address questions and concerns about pediatric feeding disorders and tube feeding.
- Tube Fed Kids http://tubefedkids.ning.com/ is run by parents of past and present tube-fed children. In the forum, parents of tube-fed children share experiences and support other parents during their own tube feeding/weaning journey.
For more information, see related articles and resources here:
- Tube Feeding A Child: The G-Tube That Saved My Son’s Life & My Sanity
- Tube Feeding at School: 8 Tips to Prepare Your Child and School Staff
- Feeding Tube Accessories: How to Improve Life with a Feeding Tube
- Introducing Our Pediatric Tube Feeding Guide
- Home Tube Feeding: Why You Need a Registered Dietitian