QUEST Follow-up Study

Young PersonInformation Sheet-A-

IRAS Project ID: 216681

Please let us know if you would like an easy read version of this information sheet

Hello,

We are Susie, Pippa and Izzy.We work at King’s College.

We saw you when you were in primary school. We also saw many of you last year. We would like to invite you to take part in the QUEST study again.

Before you decide if you want to take part, it is important for you to understand what our research is about.Please read the information carefully. You can discuss it with your family. Please ask us if you have any questions. Take time to decide whether or not you wish to take part.

Why are we doing this research?

You are one of 277 young people we sawin early childhood for the QUEST study. Our research is looking at why some young people with Autism Spectrum Condition (ASC) find adolescence easier than others.

Over the last 18 months we have seen most of the young people from QUEST again. We looked at different things that might affect mental wellbeing, including: how you learn, your language skills, the way you recognise and label emotions, and what positive and negative feelings you have.

The aim of our research is to work out how best to support young people and their families by identifying which families might need extra help and support as their children grow older.

What does the research involve?

We want to hear how you and your family are getting on. We would like to visit you at school, or you can visit our research centre in Denmark Hill with your parent/caregiver, to do some activities:

Do somecomputer tasks (1hour). These tasks will be a bit like computer games and a bit like school work. When doing school work or playing computer games a person’s body often reacts by changing their heart rate and skin conductance (sweat). We would like to measure these responses:

HEART RATE: using 2 small sensorsstuck to your lower back and 1 on your upper shoulder. If you would prefer to put these on yourself then we can show you were to place them.

SKIN CONDUCTANCE (or skin response): by taping a small sensor on your finger.

What do the sensors do? These sensors show us changes in heart rate or skin response. They are often used in research or in sport science. These are completely harmless and painless.If you do not want us to use the sensors, then we can leave it out.

Answer somequestionnaires(30 minutes). These will ask about your strengths and difficulties, your recent experience, and whetheryou use social media, such as Facebook, to be in contact with others.

We may wish to access your medical records to check whether you have had any previous assessments which may be relevant to this study.

How do I decide whether to take part?

Please talk with family or adults you are close to about the study. Being in the research is entirely voluntary. You can participate in some parts, such as completing the questionnaires, and not others if you like. If you do decide you would like to take part, you are free to stop (or withdraw from) the research study at any time. You do not need to give us a reason if you no longer wish to take part.

What happens to my information?

We will be very careful with any information we collect from you. Only the research team will be able to look at your information and we’re not allowed to show your information to anyone else – it is strictly confidential. It will be stored in a secure and locked office and on a password-protected database. We will also store the information with a unique number to identify it, rather than your name. If you are happy to receive it, we will send a newsletter to your family at the end of the study with information about the results.

When might confidentiality be broken?

Although the information you give is confidential, if you tell us anything which we feel puts you or anyone else at any risk, it may be necessary to report this to the appropriate persons. This is uncommon and we would expect to obtain your consent first to share this information.

What if there is a problem?

If you have any questions or worries about any aspect of this study, you should ask to speak to Susie or Pippa.They will do their best to help you.

This research project has been reviewed by the Camden & Kings Cross research ethics committee.They are there to make sure you are treated well.

Further information and contact details

If you require further information please contact:

Pippa White
Email:
Phone: 0207 848 5416 / QUEST Research Team
Child & Adolescent Psychiatry
Institute of Psychiatry
Denmark Hill
London
SE5 8AF
Susie Chandler
Email:
Phone: 0207 848 5416

Emily Simonoff, MD PRCPsych

Professor of Child and Adolescent Psychiatry

24. QUEST 3 Info Sheet YP Int. A Under 16 V.3. 03-04-17