Help us to understand the psychological and social impact of coeliac disease.

What is the project about?

This project is funded by Coeliac UK and looks at psychological and social factors in coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself. ; so we are interested in peoples' experiences living with the condition, what they find easy or difficult about it, what they understand about the condition and how they feel about it.

Why is it important?

Research carried out in other countries suggests that some people find living with coeliac disease more difficult than others.  It also suggests that levels of anxiety and depression might be higher in some people with coeliac disease than in those who do not have the condition. To date, there has been very little research in the UK looking at this, so we feel it is important to understand more about the experiences of people with coeliac disease living in the UK.

Who is conducting it?

This project is being carried out by a team of researchers at the University of Birmingham. The team is lead by Dr Ruth Howard who is a Clinical Psychologist.

Research Team:
 - Dr Ruth Howard  Clinical Psychologist
 - Dr Gary Law   Clinical Psychologist
 - Dr Jan Oyebode  Clinical Psychologist
 - Dr Jane Petty  Research Fellow, School of Psychology, University of Birmingham

What will I have to do?

The study is entirely questionnaire based. If you decide to take part, you will be asked to fill in a number of questionnaires either online or as a paper copy.

How long will it take?

We estimate that it will take 20 - 30 minutes to complete the full questionnaire pack.

Who can take part?

We are interested in hearing from four different groups of people:

1. Adults with a confirmed diagnosis of coeliac disease

2. Young people (over the age of 11 years) with a confirmed diagnosis of coeliac disease

3. Parents of children or young people with a confirmed diagnosis of coeliac disease

4. Partners / spouses of adults with a confirmed diagnosis of coeliac disease.

It is possible that you might fall into more than one of these groups. For example you might be an adult with coeliac disease and you might also have a child with coeliac disease. In this situation, you can choose to complete just the adult questionnaire, just the parent questionnaire or you can choose to complete both.

What if I get the answers wrong?

There are no wrong answers! The types of questions we will ask you are about your personal experience of coeliac disease, your understanding of it and how it makes you feel.  We would simply ask you to be as honest as you can when you answer the questions and remember that the answers you give will be completely confidential.

Will I get my score at the end?

The questions we are asking are about your personal experience of coeliac disease and will not produce a meaningful 'score' at the end, just a picture of how different experiences of coeliac disease. We will therefore not provide individual feedback on the survey but the main findings of the study will be published in Crossed GrainOur magazine which is published three times a year. and possibly in a peer reviewed academic journal once the study is completed.

Is the survey anonymous?

Whilst all the answers you give will be completely confidential, we will ask for your name and address at the end of the survey. This is for several reasons:

1. it will enable us to find your data if you decide to withdraw from the study.
2. it will allow us to match up questionnaires if your child or partner also completes a questionnaire pack and look at the impact of coeliac disease on families.
3. we may want to follow-up some participants depending on the results we get.

We would like to assure you that your contact details will be stored securely and separately from your responses and that you will not be identifiable in any way by the reports and articles that are written at the end of the study.

Are there any benefits?

We do not envisage there being any direct benefit to the people who take part in this project. However, we hope that the results of the study will help us to identify some of the reasons why some people find coeliac disease more difficult to live with than others. We can then look at ways of helping the people who find it more difficult to manage.

Are there any risks?

Some of the questions in the survey ask about your understanding of coeliac disease and how you feel about it. It is possible that you might find these questions a bit upsetting but we do not expect this to affect many people or to have any long term impact. You do not have to answer any question that makes you feel uncomfortable. If you decide to take part and find that you are upset by any of the questions, we would advise you to call the Coeliac UK helplineOur Helpline is staffed by dietitians and food experts. You can call them on 0845 305 2060. on 0845 305 2060 and speak to one of the team. They are aware of the project and will be able to help.

Will anyone else know I've taken part and what I have said?

All your answers will be stored anonymously so no one outside of the research team will know you have taken part. None of your answers will be identifiable in any of the reports or research papers we write at the end of the project.

Do I have to use the internet to take part?

Two of the surveys are available to complete online (for adults with coeliac disease and their partner/spouse) but all four of the surveys are also available as paper copies which we can send you through the post. It is entirely up to you which option you choose; the questions are exactly that same in both formats.

What if I change my mind?

If you change your mind about taking part, that is fine and you are entitled to ask us to remove your data from the database without telling us why. You can do this until we finish collecting data (probably towards the end of 2010) but after this time all the data will be analysed and therefore cannot be removed. We would like to assure you that all the answers you give will be completely confidential and you will not be identifiable in any of the reports or papers that we write.

What if I want more information before deciding?

If you have further questions about the research project please contact the team on 0121 414 4935 or email coeliac.study@gmail.com and we will be happy to answer them.

Adults and partner/spouses
Questionnaires for adults with coeliac disease and for partners and spouses of adults with coeliac disease are available online by clicking on the relevant link below. Questionnaires are also available as paper copies if you would prefer. Please contact Dr Jane Petty on 0121 414 4935 or coeliac.study@gmail.com if you would like to request a pack be sent to you in the post.

Young people & parents 
Questionnaires for young people with coeliac disease or for parents of a young person with coeliac disease are only available as paper copies as we do not have permission to use some of the questionnaires on the internet. If you would like to take part, please contact Dr Jane Petty on 0121 414 4935 or coeliac.study@gmail.com and we will send you the pack through the post. 

To complete the adult surveys choose one of the following links.

Adult survey  

Spouse/partner survey

If you would like to complete the young people or parents survey, you will need to request a hard copy as above.