How Do Digital Tools Support the Behavioural Treatment of Tourette Syndrome (TS) among Young People?
MindTech is currently investigating how digital tools such as mobile apps could be used to help deliver evidence-based treatments for Tourette Syndrome to young people and their families. Previous research by the MindTech team has shown that behavioural treatments such as Habit Reversal Therapy are effective in reducing tics in children and young people with TS, however, there are often significant difficulties with getting access to this treatment.
As part of this work we ran a project in partnership with the University of Bath to investigate how existing mobile apps for relaxation may support the treatment of Tourette Syndrome and to discover what young people and their families think of these products. Note: This initial project is now ended, but work on Digital Interventions Tourette's continues in MindTech - please contact Dr. Caroline Falconer for details.
Participant Information Sheet
You are invited to take part in a research study that is part of a Health Psychology master's degree project. The study is being run by The University of Bath and MindTech to find out how mobile applications (apps) support the treatment of Tourette syndrome among young people.
Before you decide to take part, it is important for you to understand why we are doing the study and what it will involve. If there is anything that is not clear to you, or if you would like more information, then please feel free to ask.
Why is the study being done?
Many individuals with Tourette's syndrome seek behavioural treatment because of the side effects experienced from taking medication (Cuenca et al., 2015). However, access to these behavioural interventions is limited (Frank & Cavanna, 2013). Mobile apps have the potential to support and increase access to treatment. However, the number of mobile apps available is increasing, and there is little evidence evaluating how effective they are. Therefore, your participation in this research is very important as it could help us find out what mobile app features are most useful to you!
Why have you been chosen?
You have been chosen because you are between the ages of 10 and 17 years old and are a member of the organisation 'Tourette's Action' (and even if you are not a member please still get in touch).
Will you get paid?
You will receive a £10 high street voucher for taking part in this research study.
Do you have to take part?
No, it is up to you and your parent(s)/guardian(s) to decide whether you take part or not. If you decide to participate, you can stop taking part in the study at any point if you wish to.
What does the study involve?
For the first part of this study, we will ask you to complete an online questionnaire. You will be asked some questions about the treatment you receive and about your previous experience using digital technology. You may like to ask a parent/guardian to help you with the questionnaire. The questionnaire should take 20-30 minutes to complete. Once you have completed this, we would like you to download 4 apps onto your mobile device and test them out for 2 weeks. At the end of the 2 weeks we would like you to fill in another online questionnaire and take part in a group discussion or a one-to-one interview (face-to-face, over the phone or via Skype) to discuss your experience of using these mobile apps. The online questionnaire should take 15-20 minutes to complete and the group discussion or interview should take approximately 45 minutes. All of the apps are free to download, so if you would like to review them before you decide to take part, the apps are:
1. Self-help for Anxiety Management (SAM)
2. Breathe 2 Relax
4. Universal Breathing
Are the apps free to download?
Yes, all of the mobile apps are free to download onto Android and IOS devices. The app 'Universal Breathing' does have an option to purchase an upgraded version of the app. Please do not upgrade to the full version of this app, we would only like you to test out the free version.
Do any of the mobile apps require an internet connection?
Some of the features in the apps will require access to the internet through a wifi connection or through your mobile network data. Please make sure to check your mobile phone permission settings to adjust whether or not you would like the app to use your network data if you are not connected to a wifi network.
What are the possible advantages about taking part?
By taking part in this study you could help future research in the design of a new mobile app for young people with Tourette syndrome.
What are some of the possible disadvantages of taking part?
A few of the questions we would like to ask you are about anxiety and tics which can be upsetting for some people. You do not have to tell us anything that you do not wish to. You can end the study at any time without giving a reason. If anything has upset you and you would like someone to talk to about it., we have provided a list of contact details in the questionnaire.
Are the mobile apps safe?
All the mobile apps have been reviewed and approved by a research team who specialise in mental health disorders.
Who will know about my results?
The answers you give to us on the questionnaire will be kept safely locked away in a filing cabinet at the University of Nottingham. All the information we collect about you will be kept confidential. This means your name and other personal information will be removed so that you cannot be identified. If you tell us something that worries us, then we might have to share it with someone else. We will let you know if we do this.
Is the research safe and who has checked it?
This study has been reviewed and approved by the University of Bath's Department of Psychology Research Ethics Committee. This means that the Ethics Committee have decided that the study is safe for you to take part in if you want to.
What will happen at the end of the research study?
Who do I contact if I have a question or need more information?
If you and your parent(s)/guardian(s) have any questions about the study, please contact:
Address: NIHR MindTech Healthcare Technology Co-operative
Institute of Mental Health | University of Nottingham Innovation Park | Triumph Road | Nottingham | NG7 2TU
Thank you for reading this information sheet!