Supporting Children and Young People to Live Well With Coeliac Disease: A RCT
This study is exploring a new online support resource designed for parents of children aged 7-11 with coeliac disease. Living with coeliac disease means following a strict gluten-free diet, which can be challenging for families and impact their psychological wellbeing. This resource aims to provide practical and emotional support to help parents manage their child's diet and improve the overall quality of life for the child and the family. We already know from a smaller study that this type of support is helpful and something families want. Families taking part will complete questionnaires about wellbeing and diet management. Some families will receive the resource immediately, while others will get it after five months. All families will complete follow-up questionnaires to see how helpful the resource is.
At a glance
What is this study about?
Living with coeliac disease means that children and young people need to follow a lifelong diet completely free of gluten. Gluten is a protein found in wheat, barley, and rye. For someone with coeliac disease, eating gluten causes damage to their gut. While this special diet is very important for staying healthy and avoiding long-term problems like growth issues or tiredness, it can also be quite difficult to manage in daily life. Things like school trips, birthday parties, or eating out can feel like a big challenge. This can sometimes make children feel different or left out, and it can also cause stress and worry for parents.
This study, called 'Supporting Children and Young People to Live Well With Coeliac Disease', is looking into a new online resource for parents of children aged 7 to 11 who have coeliac disease. The resource is designed to give parents tools and tips to help them manage their child's gluten-free diet more easily, and also to support the family's overall emotional wellbeing. We know from previous research that parents often feel anxious about managing the diet, which can then affect their children. This resource aims to break that cycle by helping parents feel more confident and supported.
We've already tested a similar version of this resource with a small group of families, and they found it very helpful and easy to use. This new, larger study will involve 172 families and aims to work out exactly how effective this new online resource is. The goal is to improve how families manage the gluten-free diet, make children with coeliac disease feel better about their lives, and support the wellbeing of their parents.
Key takeaways
- This study explores an online resource for parents of children (7-11) with coeliac disease.
- The resource aims to improve gluten-free diet management and family wellbeing.
- No medication or in-person visits are required for this study.
- Families will be divided into two groups, some getting the resource immediately, others later.
- Participation involves completing online questionnaires over five months.
- The goal is to find out if this support can make a real difference for families.
Who may be eligible?
To join this study, we are looking for parents or guardians who are caring for a child with coeliac disease. Your child needs to be between 7 and 11 years old.
You and your child should be willing to try out an online psychological self-help resource. It’s also important that you can understand English well enough to use the online resource and fill in the surveys.
You wouldn't be able to join if your family is already taking part in another study that involves trying out a new treatment or intervention. Also, if a doctor feels that taking part wouldn't be right for your family due to other complex health difficulties, then you wouldn't be eligible.
- I am a parent or guardian of a child with coeliac disease.
- My child is between 7 and 11 years old.
- I am willing to try an online self-help emotional support resource.
- I can read and understand English well enough for online resources and surveys.
- My family is NOT currently in another study testing a new treatment or intervention.
- A doctor has not indicated that this study would be unsuitable for my family.
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
If you decide to take part in this study, you will be asked to complete some questionnaires about your family's wellbeing and how you manage your child's gluten-free diet. These will be done online. Families will then be split into two groups by chance. One group will get access to the online self-help resources straight away, and the other group will get access after five months. All families will be asked to complete follow-up questionnaires at one, two, and five months after they start the study, regardless of when they get the resource. There are no clinic visits required, and no medication is involved. The whole study will last for approximately five months for each family, during which you'll provide feedback on the resource and your experience of taking part.
Potential risks and benefits
Locations (1)
- Royal Surrey County HospitalGuildford, United Kingdom
Common questions
What is coeliac disease?
Coeliac disease is a condition where your body's immune system reacts badly to gluten, causing damage to your gut. It's treated with a lifelong gluten-free diet.
What is a 'self-help psychological resource'?
It's an online tool or guide designed to give you information and strategies to help manage the emotional challenges that can come with living with coeliac disease.
Will my child have to take medication?
No, this study does not involve any medication. It focuses on providing support and information.
How long will I be in the study?
Each family will take part for about five months, completing questionnaires at different points during that time.
What if I change my mind about taking part?
You are free to withdraw from the study at any time without having to give a reason, and it won't affect your child's medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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