Encouraging independence in children with stomas

Encouraging independence in children with stomas

Having an ostomy means adding another daily chore that you have no choice but to face and carry out. Children who face life with a stoma will of course have parents/carers to carry out their stoma care when very young. In our household, we have two little people who need help with this, including myself. The baby is busy learning what the world is, finding his feet quite literally, and babbling away. Our eldest however, is at an age where things can be out in place to encourage independence with the end goal being to do bag changes himself. When changing your stoma bag, if you are a dab hand at it you probably do it on autopilot, but if you really break down every movement, each action you take, where you need to grab things and be aware of your environment, it’s a lot for your brain to engage the body with. Take that and give it to the hands of a little one and it’s quite the task. 

Some children may have always had a stoma such as in my boy’s case, so may know no difference and are used to seeing the process. On the other hand, there will be some who aren’t in the same position where parents/carers and children are learning together as they go. As we know, everyone’s experience and reason can be quite different for having a stoma, so seeing how others have navigated it and adapting it for your own day to day life is all we can do.

Here are my tips for promoting independence:

1. Talk through the process as you are doing it. It shouldn’t feel like a school day but as you chit chat, including the steps in conversation will help it be more memorable.
2. Have the supplies needed for the process in an accessible space, easy to reach and find. If you have a stoma which makes having pre cut bases possible, this will help with the process immensely. This isn’t the case for us three, so I always cut the hole in the base beforehand, and have the base out ready to go. 
3. If you use adhesive remover spray which is available in a 50ml size, have them for little hands to hold and be part of the spraying process. This will be easier for little hands and it can be part of their job to help. A new spray can be quite hard to press and get going so do the first few sprays to help. 
4. Ask the child if there are any steps that they want to help with. Our stoma nurse shared with us that children usually want to help change a bag before emptying, as they don’t want to get a mess on their hands. You may find the child wants to help with steps that don’t involve contact with poo! Any interest is great and should be encouraged. It doesn’t have to be the first step. Any step can be built on.
5. Praise, praise, praise! Verbal praise for all is great, and the more the merrier as they grow in confidence. Maybe little rewards can be in place for helping. For little ones a sticker chart as a visual representation of how great they are doing could be used. For older kids, a trip to the park, extra time on an activity they like, or extra screen time could be a winner. 
6. Consistency is key – it takes on average 66 days to form a habit (see reference here). If they help with a step of the bag change, try and keep their participation as a part of the routine to form a habit. Easier said than done, and much more achievable with an older child I know. 
7. The child’s age/medical condition and possible limitations in mobility will have a part to play in how you do a bag change. For mine with no mobility issues, now he is older it is more appropriate to do so with him standing up as he would as an adult. This is recommended as it prevents creases in the skin where leaks can form as a result. This can mean more of a mess as a result with poo falling from a greater height. Putting suitable pads down (puppy training pads are great for the job if you can’t get them on prescription) to protect your flooring will make it easier to clean up. 
8. Knowledge and shared experience is power. Connecting with other parents/carers and seeing what they do can inspire you. Sometimes things to help can be right for you, but you need to hear it from others. Reach out if you know people face to face or online through Facebook groups or Instagram users who document their experiences. It’s always a learning day!

I am sure there are plenty more tips, these are just a few of mine from my own experiences. Always consult your stoma nurse when you start for advice as they will have plenty of hints and tips to get you started too!

Until next time,
Rach x