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.
Dr Rose-Marie Satherley
Lecturer in Clinical Psychology
Rosie earnt her PhD in Psychology from the University of Birmingham. She completed her post-doctoral research at King's College London and the University of Surrey.
Rosie's research primarily explores the intersection between dietary-controlled conditions and disordered eating. During her PhD, she developed a model of disordered eating in gastrointestinal conditions, and a screening tool to identify those most at risk. More recently, she co-designed a psychoeducation intervention to prevent disordered eating in children and young people with type one diabetes (the PRIORITY trial).
More broadly, Rosie designs and evaluates integrated health system interventions to improve child health. She led the process evaluation, nested within a randomised controlled trial, of a new model of care providing integrated services to 120,000 children (the Children & Young People's Health Partnership). Findings from this trial are emerging, but baseline analyses are already being discussed in Parliament due to the impact on child health.
Dr Annabel David
Senior Clinical Psychologist, Oxford Children’s Hospital
Dr Sophie Velleman
Specialist Clinical Psychologist, Bristol Children’s Hospital
Lived experience advisor
Research groups and centres
Our research is supported by research groups and centres of excellence.