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
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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/ 

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: 

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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: