emotional wellbeing for parents and carers of young people with IBD

parenting, IBD and emotional wellbeing

Being a parent or carer is difficult at the best of times. But when a child is diagnosed with inflammatory bowel disease (IBD), it can open the door to new worries and concerns. While some cope fine with their IBD, other young people can sometimes struggle.

The physical impact is just one part of IBD. Unfortunately, children and young people with long-term conditions are at greater risk than their peers to experience mental ill health.

The pressure of managing the illness, medications and hospital appointments while coping with school, keeping up with hobbies and maintaining friendships can be huge. What’s more, the nature of IBD symptoms can make it difficult for children and young people to open up about their illness.

Your child might feel low sometimes. They might have problems at school or at home. They may find it difficult to talk about, or even understand, how they are feeling. This can lead to a range of negative emotions, including anger, anxiety, loneliness and feeling ‘out of control’.

It can affect the whole family. Parents and carers can feel as though they are being pulled in all directions. They have to cope with the diagnosis and care for the child and their siblings, all while looking after their own emotional wellbeing.

But you are not alone. Many parents and carers feel this way.

practical help

There are things you can do to look after your and your family’s emotional wellbeing.

CICRA’s emotional wellbeing kit will arm you with the knowledge and tools you need to support your children and look after yourself. It will also help you recognise when you and your family might need a little more support.

Remember: Asking for help is nothing to be ashamed of. In fact, it shows you are strong enough to take control.

Of course, not all of the issues you and your children face will be related to IBD. As you work through this kit, we will help you to understand when the condition is impacting on your family.

Through practical activities and by sharing the personal stories of others in your position, we hope to help you look after your and your family’s emotional wellbeing. Because we believe childhood should not be limited by IBD.

You will go through many emotions, it’s like a grief process. It’s ok to cry and be angry. Make sure you have support from friends and family and make time for yourself, it’s important to look after yourself so you can take care of your sick child
Parent of a child with IBD, CICRA’s Dealing with Diagnosis Survey, 2019

emotional wellbeing kits for parents

Our emotional wellbeing kit has different sections. You may want to just focus on one or you may want to have the full pack. Whatever you choose, the info sheets have links to additional resources, from CICRA and from other respected organisations. The packs have been prepared with input from others in similar situations, and expert clinical psychologists:

You can download all of these in one parents and carers pack (PDF). You may also want the young person with IBD pack and the siblings pack. (Both PDFs)

download all three emotional wellbeing kits

Download the full emotional wellbeing kit as one combined PDF file with sections for parents, young people with IBD and siblings.

CICRA emotional wellbeing kit family pack (PDF)
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