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 Research Ethics Committee, a group of people who work to protect your safety, rights, wellbeing and dignity.

Yes. The READY study will publish its results in written English and in British Sign Language. 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 in interviews because you are already part of the READY study and you said you were interested in being interviewed.

There may be two people who do the interview with you. The first will be a very experienced researcher from either the University of Manchester or the University of Edinburgh. The second person who may be with them will be a deaf young person like you who has been specially trained to carry out an interview with another deaf young person. This means you will be talking someone of a similar age to yourself who also has the experience of being deaf. All of the researchers doing the interviews will have had DBS checks via the University of Manchester or the University of Edinburgh at an enhanced level to make sure they are suitable to do this work. All of the interviewers will be able to adapt their communication method/language to suit you (spoken English, SSE, BSL, etc.).

A member of the research team will contact you to arrange a time to meet you face-to-face. You can choose the time and the place to meet. You can read this information sheet and ask any questions before you meet the interviewer (email: READY@manchester.ac.uk), as well as on the day. If you are happy to go ahead, you will be asked to fill in a consent form to say you agree to the interview. Then the interviewer will ask you some questions about your everyday life, friendships, language use, wellbeing and independence. The interview will be recorded on a digital camera or sound recorder. The interview will last for about 90 minutes. We would like to interview you every year for 4 years, but each year we will check first whether you still want to take part in the interview.

We will not pay you to take part in the interview, but if you have to pay to travel to the place where the interview is happening, we will pay you back. We will also give you a £20 voucher each year, after you have been interviewed, as a thank you.

It is completely up to you to decide if you want to take part in the interview or not. You can read this information sheet and ask the research team any questions, or talk to other people (e.g. friends or family) before you decide. If you do decide to take part you will be asked to sign a consent form that shows you understand and agree to being interviewed. The interviews will be recorded, either on digital cameras or on digital audio recorders. We need to record the interviews so that we can check again later what you said. If you are not happy to be recorded, the interview will not go ahead.

We will also ask you to agree to be contacted again in one year’s time, so we can arrange the next interview. Every year we ask you to be interviewed 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 interviews when we contact you each year (but you can still carry on with the surveys if you want to). 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. However, 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 change your mind during the interview, you are free to stop the interview at any point without having to give a reason.

Because you are already participating in the READY study, we already hold some information that could identify you. This is called “personal identifiable information”. Specifically, you have already told us:

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

Because we will also record your interview, your whole face and hands will be visible (or your voice, if we audio record), these recordings will also be “personal identifiable information”.

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, including the right to ask for a copy of any recordings we make of you. 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.

Only the research team will have access to information about you and your contact details and we will make sure these are kept safe and secure. We will follow data protection law.

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 the relevant authorities/people.
• 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/people.

All of the information you give us in the interviews 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. Members of the research team or University approved suppliers will transcribe your interview (that means they will write down what is said in the interview). The transcriber will remove any personal identifiable information from the transcripts.

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 interview transcripts 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 not put the original recordings that show your face or include your voice into 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