Information to participants
Thank you for your interest in this research. In this page you can find detailed information about the project to help you deciding if you want to allow your child to be part in this research.
TAKING PART IN THIS STUDY IS VOLUNTARY
You may choose not to allow your child to take part in the study or may choose for your child to leave the study at any time. Deciding not to allow your child to participate, or later deciding to remove your child from the study, will not result in any penalty or loss of benefits to which you and/or your child are entitled and will not affect your or your child’s relationship with NUI Galway.
WHO CAN TAKE PART?
Children with age of 8-12 years with a previous diagnosis of Autism Spectrum Disorder (ASD) without a history of intellectual and language disability, also known as Level 1 diagnosis of autism.
HOW MANY PEOPLE WILL TAKE PART?
If you agree to allow your child to participate, your child will be one of 12 participants taking part in this study.
WHAT WILL HAPPEN DURING THE STUDY?
If you agree to allow your child to be in the study, your child will be asked to attend online study sessions to do the following things:
- Engage with four computer-based activities that will stimulate them to go through different emotional zones, the activities are, watching two small videos, solving a math worksheet and playing a game.
You are also asked to be part of this study by doing the following:
- Before the first session, answer questions about the special interests of your child, what usually calms and upset them. The questionnaire is expected to take less than 5 minutes.
- Posterior to your child's session, we will ask you to attend an online session to watch the recorded video of your child and identify your child’s emotions from the video. This will also be done online. We will schedule a video call with you to give you instructions on this.
- After having identified your child’s emotion from the recorded video, answer a questionnaire about how your child expresses emotions. It is expected to take less than 5 minutes.
Your child’s sessions are separated from yours. We will schedule different times for them.
HOW LONG WILL IT TAKE?
Each session is expected to take around 30 minutes. You and your child are required to attend to two different online sessions in different days. Your child’s sessions are separated from yours. We will schedule different times for them.
WHEN AND WHERE WILL THIS HAPPEN?
The sessions will be held online through a video conference software, i.e. Zoom at a date to be yet agreed.
ARE THERE REQUIREMENTS TO BE PART OF THIS STUDY?
Yes. Because the study will be held online thought a video conference, it is necessary that your household has a computer equipped with camera and microphone to be used to connect to the study sessions. Also, your child will need to wear a headset or earplug to listen the audio during the session. We also kindly ask you to be present during your child's session.
WILL MY CHILD’S ASSENT TO BE PART OF THIS RESEARCH BE REQUIRED?
Yes. If you agree to allow your child to participate, we will talk to them using age-appropriate language and ask if they desire to be part of this study. If your child doesn’t agree in be part of this study, they won’t, even if you had already agreed with it. For your child be part of this study, both you and they need to agree. If you request, the researchers will show you the material that will be used to seek for your child’s assent.
WHAT ARE THE RISKS OF TAKING PART IN THE STUDY?
The study's tasks are designed to elicit a change in emotion. They are everyday tasks many children encounter and so these tasks serve to create typical scenarios that children with autism often experience. There is a possibility the study may cause some temporary level of emotional stress on the children participating in it through two tasks: Playing a game and answering a math quiz. Because of that, we put in place actions to ensure the emotional wellbeing of the participants. Those actions are: After each of the tasks, there are calming contents to support the child's emotion regulation, for example, child-friendly guided breathing exercises. On top of that, the child can request for a pause or to stop the session altogether. Another key point to make sure the child is well is the presence of the parent, who can also request a pause or to stop the session. Additionally, the researcher conducting the study received training on how to interact with children with autism and is supported by researchers, during the sessions, with extensive experience in working with children with autism. They have the training and experience on how to intervene if the child becomes upset during the study. The actions described above were reviewed and approved by both the University's Research Ethics Committee and the University's Data Protection Officer.
WHAT ARE THE POTENTIAL BENEFITS OF TAKING PART IN THE STUDY?
We don’t expect your child to receive any direct benefit from taking part in this study, but we hope to learn things that will help children with Level 1 Diagnosis of ASD in the future. By accepting to allow the participation of your child, you will be collaborating to the advance of this research and any other based on it, which can lead to future discoveries and development of tools to help children like yours.
WHAT WILL BE DONE WITH MY CHILD’S RECORDS?
We will transform the original audio/video records of your child into a numerical representation (set of
numbers) to be used to create the emotion identifier computer system. When this process is complete,
identifying information from your child will not be present anymore. In other words, it will not be possible
to identify your child from this numerical representation.
The records will only be accessible to members of the research team and will be kept securely, in strict
accordance with the General Data Protection Regulation (GDPR).
Your child’s data will not be used for any kind of profiling or marketing content.
Arrangements are in place
so that yours and your child’s personal data will be processed only as is necessary to achieve the objective
of the research and will not be processed in a way that damage or distress will be caused to you and your
child.
HOW WILL MY CHILD’S INFORMATION BE PROTECTED?
With your permission, we are recording audio/video of your child as a part of the study. Every effort will be made to keep your child’s personal information confidential. This project is compliant with the recommendation of the General Data Protection Regulation (GDPR), an European regulation to protect the rights of people regarding their personal data. We created a plan with measures to protect yours and your child’s personal data which was approved by both the NUI Galway’s Data Protection Officer and the NUI Galway’s Ethics Committee (an ethics committee that helps protect people involved in research). The measures include the following:
- Keep yours and your child’s personal data stored in a secure, encrypted and password-protected server within NUI Galway premises (Data Science Institute/NUI Galway) for no longer than 3 years.
- Keep the storage server isolated from the internet, the only possible connection being from inside the Data Science Institute/NUI Galway's network.
- The only people who will have access to yours and your child’s personal data records are the researchers listed above.
- After 3 years, all the personal data will be deleted.
- We are not going to share yours and your child’s personal data with anyone else.
- No information which could identify you or your child will be shared in publications about this study.
WILL MY CHILD’S INFORMATION BE USED FOR RESEARCH IN THE FUTURE?
Your child’s audio/video records will not be used or distributed for future research studies without your
consent.
This research involves processing the original audio/video records from your child into a numerical
representation to be used to create the emotion identifier computer system. This processed numerical
representation may be used for future research studies or shared with other researchers for future research.
If this happens, information which could identify your child will be removed before any information is
shared. Since identifying information will not be present, we will not ask for your additional consent.
WILL I BE PAID FOR PARTICIPATION?
Your child will not be provided with any payment to take part in the research.
CAN I HAVE ACCESS TO MY CHILD’S RECORDED DATA?
Yes. It is your right to request and have access to this data. If you desire to have a copy of your child’s records, please contact us here and we will hand you an encrypted DVD media with a copy of your child’s records.
WILL I BE INFORMED OF THE OUTCOME OF THIS RESEARCH STUDY?
If you want, you can receive information about this research study’s results. Please contact us here and we will contact you with general and anonymised results from this research by the end of its lifetime, around 3 years.
WHAT IF I CHANGED MY MIND AFTER THE STUDY AND DON’T WANT MY CHILD’S PERSONAL DATA STORED ANYMORE?
In general, you have the right to request your child’s data to be deleted before the 3 years of retention time. However, other law conditions may also apply. So, if you desire to have your child’s records deleted, please, contact us here and we will deal with this request on a case-by-case basis, in accordance with the law.
WHO SHOULD I CALL WITH QUESTIONS OR PROBLEMS?
For questions about the study, contact me at any time by email at a.defreitassousa1@nuigalway.ie or annanda.sousa@insight-centre.org. I will be happy to answer any question you have about the project. You can also contact my supervisors Prof. Mathieu d’Aquin at mathieu.daquin@insight-centre.org or Dr Manel Zarrouk at zarrouk@lipn.univ-paris13.fr.
For questions about your or your child’s rights as a research participant, to discuss problems, complaints,
or
concerns about a research study, please contact the NUI Galway Data Protection Officer, details provided
below:
Peter Feeney
The Data Protection Officer
NUI Galway, Room A129,
The Quadrangle,
NUI Galway University Road,
Galway
Email: peter.feeney@nuigalway.ie or dataprotection@nuigalway.ie
Phone number: +353 91 493673
If you have any concerns about this study and wish to contact someone independent and in confidence, you may contact the Chairperson of the NUI Galway Research Ethics Committee, c/o Office of the Vice President for Research, NUI Galway, by phone at +353 91 495312 or by email at ethics@nuigalway.ie.
You also have the right to lodge a complaint with the Data Protection Commissioner of Ireland, details
provided
below:
https://www.dataprotection.ie/en/contact/how-contact-us
Phone numbers:
+353 578 684 800 or +353 761 104 800 09:15 - 17:30hrs (17.15 Friday)
Postal Address:
Data Protection Commission
21 Fitzwilliam Square South
Dublin 2
D02 RD28
Ireland
