Edge Hill University and Manchester University have led the development of a new resource, available freely online, that helps young people tell their friends about their IBD.
The package includes a helpful and accessible animation and three leaflets with information for young people with IBD, their friends, and education professionals working with them.
The research behind the resource
The new resource was developed based on findings from research that was funded by Crohn’s & Colitis UK. This research involved a survey and interviews with 31 young people (16 males, 15 females) aged between 14-25 living with IBD.
The findings demonstrated that the decision and process of telling friends about IBD is challenging for most young people.
Having control over when or how you tell people is not always possible, and the possibility of telling someone can feel risky and may have consequences. Will people still want to hang out with me? Will they think I’m ‘unhealthy’?
However, the study found that most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their Crohn’s or Colitis, by ‘laughing it off’ or revealing only some aspects of their condition at first, aiming to sustain their self-identity.
The research concludes that ‘Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.’
Developing the resource
Furthering the findings from the interview study, the research team worked with young people with IBD, health professionals and academics to make a resource to help others feeling nervous about telling friends.
Some of the young people in the e-advisory group also feature in the animation and share their top advice about how to tell friends and family about Crohn’s or Colitis.
Help with telling your friends
What we love about the advice is that it is simple, practical and effective. It’s not every day that you get to talk with another young person living with IBD. This animation brings together the voices of many others with Crohn’s or Colitis, so you can listen to relevant and useful advice. If you are in a situation where you feel embarrassed or nervous about telling your friends, you can feel more confident after using this resource.Access the resource for support with telling others
Helping others understand how to support you
What’s more – is that you can now direct others around you to these resources too! For example, a key teacher or your friend can read helpful advice about how they can support you. As experts of our own bodies, we often forget that those around us don’t really understand our challenges, lows and struggles. Talking can help them learn more about your experiences. If you’re not quite ready to have a conversation, you can share these information sheets with them as a starting point.Access the resource for how to support a friend with Crohn’s or Colitis Access the resource for working with children and young people with Crohn’s or Colitis
The resource is free to download from the Edge Hill University webpage and consists of a short animation and three leaflets with information for young people with IBD, their friends, and education professionals working with them.
Share your experience of using these resources
We’d love to help the team at Edge Hill and Manchester University understand the impact of these new resources.
If you’ve explored the resources and have applied the information to your life in some way, please come back and fill in this survey about how the resources helped or impacted you.
Get the My IBD Care app
The My IBD Care app includes tools to help you manage your IBD, advice to support your understanding of the condition, and resources to help you navigate living with IBD.