Development and feasibility of a self-help psychological intervention to support gluten-free diet management, psychological wellbeing and quality-of-life in children and young people with coeliac disease

Today, the term “gluten-free” is common in our lives, with most large supermarkets and restaurants stocking gluten-free foods. Because of this, many people believe the gluten-free diet must be simple to follow. It is not. People with coeliac disease must think about crumbs, the way food is cooked, and the damage that can be triggered by tiny exposures to gluten. Imagine being a child at a friends’ party wondering what the birthday cake tastes like, as you eat your gluten-free biscuit. Imagine having to tell your friends why you are eating that biscuit. Now imagine that child’s parent, who is worried their child might be pressured into eating the cake anyway, or concerned their child might get contaminated by gluten. The psychological and social effects of these situations are significant and can have long-lasting effects. 

Many children and young people struggle with the psychological and social impact of coeliac disease. Although official guidelines ensure that advice and information around the gluten-free diet is provided to families living with coeliac disease, currently there are no tools or resources to support their psychological wellbeing and adjustment to the gluten-free diet. This project will adapt existing psychological resources that are used in other health conditions, for families living with coeliac disease. We will work with families and NHS clinicians to adapt these resources for families with coeliac disease, and then invite 50 families to test these resources. This will give us enough information to see whether these psychological resources are useful to families with coeliac disease. Before providing these resources to all families with coeliac disease, we need to know that they are effective at improving psychological wellbeing and supporting effective management of the gluten-free diet. The information from this project, will help us to fund a further study that can help us answer these questions.