Being Me with IBD: young people and social interactions


Looking at how having IBD influences the friendships that young people have.


The more we can discover about whether or not young people with IBD are lonely or have good friendship connections, the better we will be able to consider how to support the young people facing difficulties

Professor Bernie Carter, Edge Hill University

What did this research look at? 

Young people aged between 14 and 25 face various changes. These include exam pressures, coping with adolescence, new jobs, going to college or university, moving away from home, and new friends. But the symptoms and treatment associated with Crohn’s or Colitis can make young people feel isolated, make it more difficult to maintain existing friendships and make new ones. In turn, this can impact on their mental health; a significant amount of young people with Crohn’s or Colitis report feeling anxious or having symptoms of depression. This study looked at how having Crohn’s or Colitis influenced the friendships that young people have, and whether it affected how lonely, connected or in control they feel.

130 young people completed a survey covering a range of factors including friendships, loneliness, anxiety, health and sense of control over their lives (self-efficacy). 31 of these young people also took part in interviews about their experience of living with Crohn’s or Colitis. They were able to draw a map of their friendships and/or take photographs about the positive aspects of friendship and the things about Crohn’s or Colitis that threaten these. These creative approaches supported the young people to focus on the things that really mattered to them about friendship and living with these conditions.

What did the researchers find?  

How Crohn’s or Colitis affect young people’s emotions
1 in 10 young people who took part in the survey reported that they experienced severe anxiety, depression and/or loneliness. Higher levels of anxiety and depression were associated with being older when they were diagnosed, abdominal pain and a lower sense of self belief.  How embarrassed they were about their condition influenced their reports of mental health, including loneliness.

How Crohn’s or Colitis affects young people’s friendships
Friends and good friendships are important to these young people, they were a source of strength and protection especially during difficult times. But keeping friends was an extra challenge.  Researchers found: 

  • Being connected to friends they trust is important to feeling part of “normal” life.
  • Keeping friends can take extra effort both from the young person and their friends.
  • Making new friends is important. 
  • Losing friends was often because of absences from usual social settings, perceptions of Crohn’s and Colitis, or symptoms making it difficult to join in activities.
  • Telling friends could be challenging, particularly who to tell and the consequences of sharing information about their condition.  

More information can be found in these information sheets made by Bernie and her team:

  1.  How to tell your friends about having Crohn's or Colitis
  2.  How to support your friend with Crohn's or Colitis
  3.  How to support children or young people you work with
  4.  How to support your child's friendships

What do researchers think this could this mean for young people with Crohn’s or Colitis? 

This study has increased the understanding of how Crohn’s and Colitis impact on the social and emotional life of young people and affect friendships during the key transition periods of adolescence and young adulthood.

Young people should be given opportunities to discuss their mental health within their regular clinic visits. Health professionals need to acknowledge the impacts that Crohn’s and Colitis can have on young people’s social relationships and quality of life, as well as their physical health.

It provides insight for health professionals which can enable them to provide better support to young people and help them consider how to share their diagnosis with friends if they wish to.  

This study also provides a strong foundation for future research into exploring friendship, loneliness and sharing a diagnosis of Crohn’s or Colitis.

The tools used in this project to identify young people with anxiety, stress and loneliness could be adapted and integrated into routine clinical practice. This can help health professionals to better identify and address needs of this group of young people.

Who is leading the research: Professor Bernie Carter, Edge Hill University
Our Funding: £48,979
Duration: 18 months
Grant Ref: SP2017-2
Official title of the application: Being Me (with IBD): growing up and getting on with my life
Tags: child; psychology; anxiety, depression