Investigators: Dr Dagmara Dimitriou and Georgia Pavlopoulou: Lifespan Learning and Sleep Laboratory

This survey is being conducted as part of a sleep research project. You should only take part if you want to. Before you decide whether to take part, it is important for you to understand why the research is being done, and what taking part will involve. Please take the time to read the following information carefully before moving on to answering the questions.
Purpose of the Research Project
Sleep promotes healthy neural, cognitive, socio-emotional and physical development. However recent studies suggest that many teenagers experience sleep problems. This study aims to gather information about teens’ sleep practises. We would like to understand what factors might pose a positive or negative influence on the sleep. 
What will happen during the survey?
-You will first be asked some questions about yourself, like your age, ethnicity, and medical history of your son or daughter
-Then there will be 251 short questions which we anticipate taking around 40 minutes to complete. 
-At the end of the questions, you will be offered the chance to give your email address. This will enter you into a prize draw for one of 10 Amazon vouchers worth £10 each.
-You will also be given the option saying that you would be interested in taking part with your teenager in sleep actigraphy and photo interview.
What will happen after the survey?
Teen’s Involvement
Teenagers will be required to wear an Actiwatch Mini (CamNTech, Cambridge, UK) on the non-dominant wrist continuously for five nights (from Sunday to Thursday night). After which, the Actiwatch will be returned to the researcher. The Actiwatch will measure sleep/wake patterns through movement using an accelerometer set in the small device. It will reveal information about the child’s sleep duration and sleep quality. The child can continue their daily activities such as swimming as this small device is waterproof.
Teenagers will also have to complete the Raven’s Standard Progressive Matrices test (RCPM) - a standardized test to measure nonverbal reasoning ability. This test takes around 10 minutes to complete and cosists  of visual geometric design with a missing piece. The test taker is given choices to pick from and fill in the missing piece.
Parent’s / Caregiver’s Involvement
The researcher will meet up with parents/ caregivers to pass the Actiwatch. During the session, the research will demonstrate how to use the Actiwatch. After 5 days of wearing the Actiwatch, the researcher will meet up with parents and/or the child to collect the watch.
Photo-taking week and final interview (if your child is verbal) 
We will provide your son or daughter with a photo camera. Each teenager will be asked to take 10-15 photos for one week of :
-Their bedroom
-Activities or items that are related to their sleep routine
-Activities or items that they feel that help them to sleep
-Activities or items that keep them awake
-Activities or items that they relate to waking up routine
-Any photo that they feel that make them think of sleep.
However, prior to this activity, teenagers will be provided with a session on how to be an ethical photographer. Parents will also be included in this session for approximately 20 minutes. Parents will be asked to review the photos that you do not include any private body parts or private activities.
Once this stage is complete, Georgia will arrange a day to talk about the photos with the teenager. This interview session last approximately 45 minutes.
Sample of questions:
Describe your picture. What is happening in your picture? Why did you take this picture? What does this picture tell us about your sleep?
Who will know about my participation in the study?
-Only the research team will know that you have taken part in this study. During the data analysis all of your data will be anonymised and a code with replace your real name.
What are the risks of participation?
-There are no major risks to taking part in this study.
-We will do everything possible to keep your answers to the questions confidential. All data will be stored under identification numbers. If you choose to give your name and email address, this information will be kept in a separate, password-protected file, and only the primary researcher (Georgia Pavlopoulou) will have the password to this document.
-No names will be used when the results of this study are published, so your identity will not be revealed in any reports based on this study.
What are the benefits of this study?
-There is a lack of firm understanding of the nature and prevalence of sleep difficulties in teens.  This is particularly important for autistic teens as we have very little understanding about their sleep. The study also hopes to raise awareness of the importance of sleep especially among teenagers with developmental disabilities.
Will taking part cost me anything?
Will I receive any payment?
The teenager will be given a  £5 voucher and individual sleep certificate for his/her participation At the end of the study the teenager will be offered the chance to enter a prize draw for one of 10 £10 Amazon vouchers. Also, parents will receive a brief report of their child’s sleep quality and quantity based on the Actiwatch findings.
What if I agree to take part and then change my mind?
-Your participation is entirely your choice and you do not have to take part.
-If you decide not to take part, there will be no effect on any services or treatment you receive now or in the future.
-You are free to withdraw at any point by simply closing the questionnaires and not completing them. Once you have completed the questionnaires you cannot withdraw your data, as it will be anonymously submitted, and we will not be able to identify which are your answers to remove them.
-At the end of the study, the data will be kept for a maximum of 10 years, on a password-protected UCL account, in a password-protected file, and will then be destroyed.
Who is carrying out this study?
-The investigators involved in this study are:
o   Dr Dagmara Dimitriou
o   Georgia Pavlopoulou, PhD candidate
o   Angelos Papaloudis, Postgraduate Student
Who is organising and funding the study?
-The study is organised at the Institute of Education
-The study is funded by The John and Lorna Wing Foundation.
Who reviewed the study?
-This project has received ethical clearance from University College of London (UCL) Institute of Education Research Ethics Committee. If you have any queries about this research at any point in time, you can contact the corresponding investigator via email to
-If you wish to talk to an independent person about your concerns, questions can also be directed to University College of London Institute of Education Ethics Committee via email

Contact details of the correspondent researcher
Georgia Pavlopoulou

Department of Psychology and Human Development, LiLAS Lab
25 Woburn Square, London WC1H 0AA
UCL Institute of Education

Question Title

* 1. Please state if you are interested in taking part with your teenager in sleep actigraphy and photo interview.