Being Me with IBD - Information Leaflets for Parents

We want to create an information leaflet to help parents of children and young people who have Inflammatory Bowel Disease (IBD). The focus of the information leaflet is on how parents can help their child to tell their friends about having IBD (and help them think about if they want to tell, who to tell, when to tell and what to tell). 

Our study ('Being Me with IBD') focused on young people, aged 14-25 years old who were growing up with IBD. We surveyed 130 young people about feelings of anxiety, loneliness, connection and depression and interviewed 31 young people about friendships.

One of the key things that came out of the study was that young people can find it hard to tell their friends about their diagnosis. Some wanted to keep it private, others wanted to share but had found it difficult to know how to share, when to share and what to say.

To try and support young people we created a resource called ‘Telling My Friends’. The resource consists of an animation and four information leaflets. The leaflets focus on:

We have recently published a short article on this that you can read here.

We now want to create a leaflet for parents about how to support their child to tell their friends

By Professor Bernie Carter and Dr Alison Rouncefield-Swales, Edge Hill University (on behalf of the Being Me with IBD Team)

Related Information:

If you’d like to find out more about how Crohn’s & Colitis UK can support young people and families of people with Crohn’s or Colitis, there’s lots of information on our website.