Participant Information Sheet

The research is being organised by the University of Manchester and University of Edinburgh. The National Deaf Children’s Society (NDCS) have asked the universities to do this research.
The research has been approved by the Ethics Committee [ref:2019-4903-10668], a group of people who work to protect your safety, rights, wellbeing and dignity

Yes. The study will publish its results in written English and in BSL. Information will be available on a special study web site as well as published in academic papers and books. Study team members will also give presentations about what we are finding out.

We have asked you to take part because you are a deaf young person who will be between the ages of 16 and 18 years old when the study begins.

You will first be asked to fill in a short questionnaire. It will only take 5 – 10 minutes. The questionnaire asks for information about your age, sex, ethnic background as well as your degree of hearing loss, where you are studying or working and your preferred communication method/language(s). We will also ask you for information about how to contact you again. You can complete the questionnaire online, on a mobile device or computer. We need this information to help us to decide whether you are able to join the READY research study. The short questionnaire will be available in English, Welsh, BSL, sign supported spoken English and sign supported spoken Welsh. If you need a different language you can ask for it. After you send us back your answers to the short questionnaire there are three things that might happen.

1. You may be invited to join the READY study and we will send you a longer questionnaire to complete. It will take approximately 30 to 40 minutes to answer. The questionnaire can be completed on a mobile device or computer. You can choose where to do this. If you prefer a paper copy, let us know and we can post one to you. The questionnaire will also be available in Welsh, BSL, sign supported spoken English and sign supported spoken Welsh. We would like to send this to you every year for 4 years, but each year we will check first whether you still want to take part in the study.

OR

2. You will be put on a waiting list to join the study. This means potentially we would like to involve you in the study but not straight away. The reason for waiting is that we need to ensure that there is a good balance of deaf young people in the research who have different backgrounds and different characteristics. E.g. we need a balance of boys and girls, young people who prefer to speak and those who prefer to sign, young people who are doing apprenticeships and others who are in higher education, some who are profoundly deaf and some whose hearing loss is mild, etc. These differences are important and we must make sure that the group of young people in the study are not all too similar. So we cannot say ‘yes’ straight away to everyone because this means the study might be full of people who have similar backgrounds and characteristics. We will not keep you waiting any more than 8 weeks before we contact you again. We will then either invite you to fill in the long questionnaire or we will explain why we are unable to include you in the study as this point. If you are invited to fill in the long questionnaire it will take approximately 30 to 40 minutes to answer. We would like to send this to you every year for 4 years, but each year we will check first whether you still want to take part in the study.

OR

3. We will let you know that you are not able to take part in the READY study. For example the study might be full already or some of the information you have told us means that you are not eligible for taking part. But we will keep in touch with you if you want us to tell you more about the study and how it progresses. You will need to give us permission to do this.

We will not pay you to take part, but each year, after you have filled in the long questionnaire, we will give you a £10 token as a thank you.

No. It is completely up to you to decide if you want to take part in the study or not. If you do decide to take part you will be asked to sign a consent form that shows you understand and agree to complete the short questionnaire. If you are chosen for the full READY study and you decide to fill in the long questionnaire as well, you will be sent a different consent form that shows you understand and agree to complete that questionnaire. We will also ask you to agree to be contacted again in one year’s time.
Every year we send you the long questionnaire you will be asked to fill in a consent form again. This is to check that you still want to take part. You can choose not to continue to take part in the study when we contact you each year. We will provide you with a simple letter that you can send to us by post or by email to say that you do not want to take part any more. You do not have to explain why. But it will not be possible to remove your data from the study after it has been included in the analysis (this will happen within one month). This does not affect your data protection rights.
If you are not yet 16 when we ask you to fill in the short questionnaire, we will ask you to sign a different form (called an assent form) to show you understand and agree to take part, but we will also need your parent/guardian to sign a consent form to show that they also agree for you to take part. You will not be asked to fill out the long questionnaire until you have turned 16.

You are free to withdraw from the study at any point without having to give a reason. If you decide to withdraw, any data we have already collected from you will be used in our final analysis. Please remember that your data will be anonymised and you will not be identified in any way.

In order to participate in this research study we will need to collect information that could identify you. It is called “personal identifiable information”. Specifically, we will need to collect:

• Your name
• Your sex
• Your ethnic background
• Your age
• Your contact details (e.g. text number, email, home address and post code)

We are collecting and storing this personal identifiable information in accordance with data protection laws which protect your rights. The law lets us collect and store your personal details because it is “a public interest task” and “a process necessary for research purposes”.

You have a number of rights under data protection law, including the right to see any of the information you have shared with us. If you would like to know more about your rights or find out the legal reason we collect and use your information, please read through the Privacy Notice for Research Participants or discuss it with your parent/guardian. This privacy notice is also available in BSL, and in Easy Read format.

The University of Manchester is the Data Controller for this project, which means that we are responsible for making sure your personal information is kept secure, confidential and used only in the way you have been told it will be used. All researchers on the READY project have received training to do this and we will make sure that they keep your information safe.

We will not reveal the names of anyone who has taken part in the READY study. However, sometimes we may have to tell other people if we are worried about you or you tell us about something that is breaking the law. For example:

• If, during the study, we have concerns about your safety or the safety of others, we would have to inform someone such as your GP, social services or a family member.
• If, during the study, you tell us about illegal activities that are happening now or that are planned in the future we have a legal obligation to report this and so we will need to inform the relevant authorities.

All of the information you give us in the questionnaires will be pseudonymised. This means that we will generate a secret code for you and make sure that your name is stored in a different place to the rest of the information you give us.
We will keep the information you give us for 6 years after the end of the research study. After the study has finished will collect together anonymised answers to the questionnaires from everyone who has taken part and these will be put in a safe data archive for other researchers to use in the future.

• It will be impossible for anyone to link your personal information to the collection of answers that are put in the archive.
• We will not transfer your personal details (such as your name and your contact details) to the archive.

We will ask you at the end of the study (or sooner, if you decide to withdraw) if we have your permission to keep your name and contact details securely at the University of Manchester for a period of 15 years. This is because we may want to contact you again in the future about other research studies. If you do not want us to keep your contact details we will destroy them at the end of your participation in the READY study and tell you that we have done so.

Please also note that individuals from The University of Manchester or regulatory authorities may need to look at the data collected for this study to make sure the project is being carried out as planned. This may involve looking at identifiable data. All individuals involved in auditing and monitoring the study will have a strict duty of confidentiality to you as a research participant.

You can contact the research team directly.  The details are below.  If you would rather contact someone independent, you can contact these people:

The Research Governance and Integrity Officer, Research Office, Christie Building, The University of Manchester, Oxford Road, Manchester, M13 9PL, by emailing: research.complaints@manchester.ac.uk  or by telephoning 0161 275 2674.

If you wish to ask about your data protection rights, please email dataprotection@manchester.ac.uk or write to The Information Governance Office, Christie Building, The University of Manchester, Oxford Road, M13 9PL. They will guide you through the process of exercising your rights.

You also have a right to complain to the Information Commissioner’s Office about complaints relating to your personal identifiable information via live text chat on their website or Tel 0303 123 1113