Understanding fatigue in young people with Crohn’s and Colitis

What is this research looking at? 

Young people with Crohn’s or Colitis often report severe fatigue. They describe it as extreme tiredness, lack of energy or exhaustion that does not go away after rest. We know that many young people with Crohn’s or Colitis experience fatigue. However, we do not know much about what this is like for them, the every-day impact it has and the things which make it better or worse. Because of this, support for these young people to manage their fatigue is limited.

This project aims to find out what factors affect fatigue in young people with Crohn’s or Colitis. It will look at both emotional factors such as mood and anxiety, and social factors such as lifestyle and support. It aims to find out what impact fatigue has on young people with Crohn’s or Colitis and their families. It will also look at the best ways of managing fatigue in this group of people.

At first, the researchers will review what we currently know about fatigue in young people with Crohn’s or Colitis. This will include:

• How fatigue affects young people with Crohn’s or Colitis.
• Any emotional and social factors that might worsen or improve fatigue in young people with Crohn’s or Colitis.
• Current ways of managing fatigue in young people with Crohn’s or Colitis.

They will then try to find out more about how young people live with and manage their fatigue. They will do this using a tool called Photovoice. The researchers will support the young people to take photos of their experiences that relate to their fatigue. They will encourage the young people to write or talk about what the photos represent. They will then look for any patterns in the photos and experiences.

The researchers will also interview members of the young people's families. They will ask the family members how they think fatigue affects the young person and what support they need to help manage their fatigue. Again, the researchers will look for patterns in these experiences.

Using this information, the researchers will work with the young people and their families to develop some information resources. These resources will aim at supporting young people and their families to better manage their fatigue. They will also raise awareness among healthcare and educational professionals.

What do researchers think this could mean for people with Crohn's and Colitis?  

The researchers hope a better understanding of fatigue in young people with Crohn’s or Colitis will lead to the development of useful resources to help manage it. These resources will also raise awareness and improve understanding among healthcare and educational professionals. This will mean that young people are better supported to manage their fatigue.

Who is leading this research: Dr Kate Muse, University of Gloucestershire

Our Funding: £76,397

Duration: 36 months 

Official title of application: A pathway to understanding the experience and management of fatigue in adolescents with IBD: a multi-phase, participatory study using Photovoice.