Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.

Resources for parents & Children

Facebook Groups 

Some families find Facebook groups very helpful for connecting with other parents and for getting support and tips from other families. 

  • There are a few Facebook groups dedicated to feeding tubes, e.g. Tube Feeding your child in the UK - support group.
  • There are also local groups, condition-specific groups and groups moderated by charities, e.g. Well Child, Together for Short Lives, TOFS
  • If you are considering giving your child a blended diet, there is a very active Facebook community: Blended Diet UK
Facebookgroup.jpg

Emotional support

  • Families tell us they find talking to other parents with children with similar needs is really helpful.
  • One family recommended this video produced in Scotland which addresses the emotional impact of feeding tube care: https://www.cen.scot.nhs.uk/educational-resources-dvds/ 
  • There is a useful website developed by a team of clinicians and families in Sydney, Australia, where you can learn about other families’ stories and experiences of tube feeding: https://childfeeding.org/
  • PINNT is a UK charity for adults and children who are tube fed: https://pinnt.com/Home.aspx

CLOTHING 

Some families have recommended clothing which has been adapted for easy access to a gastrostomy. Marks and Spencer’s sell clothes with pockets for feeding tubes: 

tubiecovers.jpg

 

Resources for explaining gastrostomies to children and siblings

Some parents have shared tips with us about how to explain what a gastrostomy is to their child or other siblings. Here are some ideas:

Dolls

  • You might find it helpful to buy or make a doll or teddy with a gastrostomy for your child to play with. There are various places you can buy dolls or teddies with gastrostomies, and other medical devices.

e.g. https://www.etsy.com/uk/market/feeding_tube_doll 

Books

Some parents tell us books about gastrostomies can be helpful for their children. Here are a few examples parents and clinicians have recommended: