Title of study: The exam experiences of young people with long-term health conditions

We are inviting young people (between 16 and 25 years old) with long term health conditions or experience of prolonged hospital stay who have taken national exams in the United Kingdom in the past 5 years to complete the following survey. By this we mean exams like GCSEs and A-levels that are set by exam boards and not by your school.

Before deciding whether you would like to take part, please read the following information carefully to understand why the research is being done and what it will involve. You can contact us if you would like any more information.

1.What is this study about?
The Great North Youth Forum is a collection of young people with experience of services at Newcastle Hospitals NHS Foundation Trust. We wanted to explore exam access arrangements for young people with long term conditions after we discussed our own experiences during a meeting and realised we all have a lot to say on the topic. We feel it is important to explore the experiences of young people from across the country and hope to discuss the findings of this survey with exam boards in charge of national exams.

2.Why are you asking me to take part?
You have been invited to participate in this study because you are a young person who has undertaken national exams in the United Kingdom and has a long-term condition or has experienced long hospital stays.

3.Do I have to take part?
Completing the survey is voluntary and any answers you give will be anonymous. You can withdraw from the study by contacting the study team (contact details below) however it will not be possible to withdraw your data after Wednesday 30th August 2023. Since participation is anonymous, we will ask you for your e-mail address at the end of the survey. We will only use this to identify your data for withdrawal. If you decide to withdraw, your data will be deleted from the study.

4.What will happen if I take part?
The survey has three sections and will take approx. 10 minutes to complete. You will be asked some questions about your health and your experiences taking state exams (e.g. GCSEs, A-levels or highers). Please answer the questions about your most recent set of exams only, even if you have taken multiple sets. We will also ask some demographic questions, we ask these questions to see if there is a correlation of experiences depending on where you live, gender, type of school or exam type. You can skip any questions that you don’t want to answer.

The data collected will initially be stored on Crowd Signal, then transferred to secure Newcastle Hospital NHS Foundation Trust storage. You will not be able to be identified in any reports or publications using this data.

This study has ethical approval from Newcastle University.

5.What are the risks of taking part?
We will be asking you questions about your health conditions and your exams, which means there is a risk of stress to you. However, we have chosen the questions carefully to avoid this and will signpost you to any support that you might need at the end of the survey.

6.What are the benefits of taking part?
There will be no immediate benefits to taking part in this survey, however, it is hoped that by understanding about the widespread issues that young people with long term health conditions face when taking exams we will be able to speak to exam boards about any changes that need to be made.

7.What will happen to the results of the survey?
The findings of this project will be shared on the Young Person’s Advisory Group website They may also be written up and published.

8.How can I contact you?
If you have any questions about this study, or would like further information please contact Jo at nuth.ypagne@nhs.net

9.What do I do if I have a concern or complaint about this study?
If you have any concerns or complaints about this study please contact Neil at neil.davidson@nihr.ac.uk