Dr Rose-Marie Satherley is a lecturer in clinical psychology at the University of Surrey. She has previously designed psychoeducation,
screening tools and integrated healthcare interventions aimed at young people to support their health and manage disordered eating behaviours. 

Following a rigorous peer and lay review process, we awarded funding to Dr Satherley and her team to develop psychological tools to support families of children and young people with coeliac disease. Although awareness of coeliac disease is increasing, many children and young people still struggle with the psychological and social impact of coeliac disease. The National Institute for Health and Care Excellence (NICE) guidelines ensure that families are given information about the gluten free diet but there are currently no tools or resources available to support their psychological wellbeing and adjustment to the diet. 

Dr Satherley explains:  

“Life is full of ups and downs, especially when a gluten free diet is involved. Children experience coeliac disease in different ways, no two children are the same, but every child can find useful tools to help them follow a gluten free diet and live well with coeliac disease. These “tools” include the child’s experiences, their medical team, friends, family, and a range of psychological tools. This research will work with children and their families to find the best psychological tools that can support gluten free diet management and wellbeing at the same time.” 

For the first stage of the project, the research team adapted psychological resources that had previously been developed to support children with other gut disorders like IBS and children with food allergies. They developed a self help eBook for families to use as a tool to manage coeliac disease together. The resource itself consisted of detailed but accessible information about the condition and emphasised the importance of following a strict gluten free diet. It focused on 4 key areas:  

1. Family attitudes towards the gluten free diet 
2. Addressing biased social standards or ‘norms’ 
3. Understanding behaviour control 
4. Coping skills 

Within these areas the resource provided strategies for positive social interactions related to gluten free foods and also provided families with knowledge to anticipate and manage challenges, including when eating outside the home.  

Finally, the resource provided families with quizzes, videos, worksheets and family activities to foster the development and maintenance of effective skills to manage day to day life and emotions, recognising the link between feelings and behaviours.  

The intervention was evaluated through a pilot and feasibility randomised controlled trial. Families who volunteered to take part in the trial were randomly assigned to one of two groups. Some families were invited to use and provide feedback on the resource and some families were simply asked to report on how they felt they were coping with coeliac disease without any support and no access to the self help eBook.  

Members of Coeliac UK were able to express interest in taking part and the recruitment target was surpassed in under 24 hours which meant the research team could involve double the number of families than they had originally anticipated. This indicated a strong interest for a supportive resource to help families manage coeliac disease.  

Analysis of the feedback from families identified that the eBook was valued by families and integrated into everyday family life. It was able to support the management of the gluten free diet and dietary adherence. The research team identified areas for improvement such as increasing the time families spent actually engaging with the eBook to allow families to gain as much benefit as possible and peer support. 

In 2024 the findings from the study were presented at the International Coeliac Disease Symposium in Sheffield, the British Society of Paediatric Gastroenterology and Hepatology meeting in Bristol and in 2025 in two publications. All families involved in the study were provided with a physical copy of the eBook to keep. 

Building on the success of the project, the research team are planning to carry out a large scale study where the resource will be adapted to incorporate feedback and then offered to a much larger number of families across the UK. The new intervention will involve an online support group for families and has initiated collaborations within the NHS which will help to further develop the work. It’s hoped that in the future, a suitable resource will be available to all families managing coeliac disease.  

Project Title: Psychological resources to meet the needs of children and young people with coeliac disease  
Total Grant Awarded: £30K 
Timeline: Sept 2023-Dec 2024