Frequently asked questions

What is the purpose of this study?

Researchers from Cardiff University and Bangor University have been commissioned to create a new information pack for children with type 1 diabetes, and then test it out.

Who can take part in the EPIC Project

Children between 6 years old and 18 years old have helped us with different aspects of the research project. They have taken part in focus groups, or an interview, and given their opinions on words and pictures that we have included in the new information pack. We are now recruiting 6-18 year olds with Type 1 Diabetes via Diabetes Clinics to take part in the randomised controlled trial.

Does my child have to take part?

Children and young people with their parents will be invited to take part via diabetes clinics participating in the study. It is up to you and your child to decide whether or not to take part. If your child does decide to take part you would be asked to sign a consent form and given a copy of the form and the information sheet to keep. If your child decides to take part they are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, would not affect the standard of care your child receives.

Children age 16 and over can in law decide themselves if they want to take part. Children under 16 years may also decide for themselves, but we will ask parents and legal guardians to sign an additional consent form.

What will happen to the information my child provides?

The information that your child provides will be used to create reports of the findings.

What are the possible disadvantages and risks of taking part?

We do not foresee any disadvantages or risks to you in taking part in the study. 

What are the possible benefits of taking part?

The health information available to you and your child is unlikely to change in the short term. However, it is hoped that the new information pack will benefit many children and young people in the future.

What if something goes wrong?

We would not expect any harm to people from taking part in this study and there are no special compensation arrangements. If you wish to complain, or have any concerns about any aspect of the way you have been approached or treated during the course of this study, the normal National Health Service complaints mechanisms should be available to you.

Will my child’s taking part in this study be kept confidential?

The information collected in this study will be kept strictly confidential, unless anything is discussed or observed which may raise serious concerns about the safety of a child, family member or professional. Information will only be disclosed for the purpose of protecting the child, family member or professional and standard procedures will be followed.
All information will be kept in locked cupboards and will only be accessible by members of the research team. No individual names or details that would identify specific individuals will be included in the themes or outputs from the study. Quotations from interviews may be used in reports, presentations and papers but these will not be traceable to specific individuals. All published and unpublished reports will disguise the identity of individuals.

What will happen to the results of the study?

The final project report will be produced in March 2011. This will be followed by a wide-ranging exercise to make known the findings, including publications in professional and academic journals, seminar and conference presentations. You will be asked if you would like a copy of a summary of the study findings.

Who is organising and funding the research?

A team from Cardiff University and Bangor University are organising the study. The National Institute of Health Research (NIHR) Service Delivery and Organisation (SDO) Programme has funded it. There is no organisational or individual payment for participation in the project.

What should I do if I have any concerns about the study?

If you have any concerns about the study you can contact one of the lead researchers on this project, their names and contact details will be provided on the information sheets. If there are any issues that remain unresolved you can contact one of the Heads of School.

If you have any other question, please contact either Llinos or Deborah:

Llinos Spencer (Bangor University)
Tel: 01248 38 3171
E-mail: L.Spencer@bangor.ac.uk

Deborah Edwards (Cardiff University)
Tel: 02920 917 810
E-mail: edwardsdj@cardiff.ac.uk.