UoG launches study to uncover impact of fatigue in young people with Inflammatory Bowel Disease

University of Gloucestershire has launched a new research study exploring the impact of fatigue on young people living with Crohn’s Disease and Ulcerative Colitis.

Funded by leading charity Crohn’s & Colitis UK, the project aims to amplify young people’s voices and reveal how fatigue impacts their daily lives.

Young people with Inflammatory Bowel Diseases, including Crohn’s or Colitis, often report experiencing severe fatigue. It is more than feeling tired – it is an overwhelming lack of energy or exhaustion that does not go away after sleep or rest.

Although fatigue is one of the most common and debilitating symptoms for young people with Crohn’s or Colitis, there is limited understanding of what it feels like, how it affects everyday life, and what makes it better or worse.

Because of this, support for these young people to manage their fatigue is limited. This research aims to develop insights that will inform better support and resources for young people, their families, and healthcare professionals.

The Picturing IBD Fatigue study invites young people aged 13 to 18 to share their lived experiences of fatigue through a three-month photo-journal. Because fatigue can be hard to describe, young people will upload photos, audio notes, and written reflections to illustrate what fatigue looks and feels like in their daily lives.

Dr Kate Muse (pictured above), Senior Lecturer in Psychology within the University’s School of Education, Health and Science, said: “Our research will explore the everyday realities of fatigue for young people with Crohn’s or Colitis.

“Using photo diaries allows young people to tell their stories in their own words and their own way. It will give us valuable insight into what it is like for young people to live with and manage fatigue.

“By understanding these experiences, we can develop better ways to support young people, their families, and healthcare professionals to recognise the challenges of fatigue and explore effective ways of coping. We are extremely grateful to Crohn’s & Colitis UK for funding our research, which will shine a light on this important and impactful issue.”

Young people aged 13 to 18 living with Crohn’s or Colitis can find out how to take part by visiting the study website.

For more than 30 years, Crohn’s & Colitis UK has been leading research activities that build evidence and create insight into the lived experiences, causes, and best treatments of Crohn’s Disease and Ulcerative Colitis.

Cristina Lujan Barroso, Research Manager at Crohns & Colitis UK, who are funding this research project, said: “This year, another 25,000 people will receive a diagnosis of Crohn’s or Colitis for which there is as yet no cure.

“Understanding how we can improve the lives of young people living with these conditions and their families is vital. It’s not always easy to engage young people in research, so we are very hopeful that the innovative approach that University of Gloucestershire is taking, enabling young people simply to post their images and experiences, will make things easier, ultimately providing valuable new insights.”  

The Picturing IBD Fatigue builds on University of Gloucestershire’s established commitment to health and wellbeing research through its Health, Life Sciences, Sport and Wellbeing research priority area.

Researchers in the Psychology Department have particular expertise in exploring the lived experiences of people with chronic health conditions, using creative and participatory methods to understand everyday challenges and improve support.