“Life is like playing a violin in public and learning the instrument as one goes along.” ~Samuel Butler
Let’s talk learning! Life with a feeding tube can be a lot of learning on the fly and sometimes the questions can come more quickly than their answers. Knowing where to go for reliable information can help simplify the learning process. Luckily, there are a few organizations doing great work that provide support to individuals on feeding tubes and their families. Not only do these support groups provide emotional support, but many also have free education materials and offer outreach services. Here are a few online resources to check out for home enteral nutrition:
The Oley Foundation – http://oley.org/
Mission: “enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties.”
Feeding Tube Awareness Foundation – http://www.feedingtubeawareness.org/
Mission: First, we would like to help other parents by sharing practical experience tube-feeding infants and children. Secondly, we would like to raise positive awareness of tube feeding so that families have the support they need.
Coping Well – http://copingwell.com
A self-help manual, Coping Well with Home Enteral Nutrition, was developed so that adults living with HEN (home enteral nutrition) could learn to cope more effectively with the therapy-related challenges they face.
Speaking of the Internet…
It’s impossible for me, as a dietitian, to talk about nutrition resources on the internet without mentioning the quality of the material. The internet is full of great information that can help you, but also contain horrible, misinformed information that can be confusing, or worse, bad for your health.
So how do you know if you’re getting quality, science-based nutrition advice or someone’s personal nutrition opinion? Here are a few tips to look for when doing search for a nutrition topic:
- Webpages ending in “.edu” – Webpages with this ending are linked to a college or university website, or sometimes a hospital affiliated with the school. These pages tend to be more evidence-based since the schools reputation is at stake. Any nutrition advice or handouts on these pages are usually made or approved by a dietitian or physician.
- Webpages ending in “.gov” – This ending means that it is a government specific webpage. These sites will have nutrition information that is consistent with the Dietary Guideline for Americans and are reviewed for accuracy.
- Webpages ending in “.org” – This means the webpage is from an organization and the page will support that organization’s mission and believes. Some organization have your best interest in mind and can be great resource, while others may be biased only care about pushing their ideas (cough-What-the-Health-cough).
Do you have any go-to resources that you use? If so, please share them in the comments below. Happy learning!
The Tube Feed Dietitian 