Participant Information Sheet for Parent/Guardian

The READY project will follow young deaf people on an annual basis for up to 5 years to understand the pathways they take after leaving school and what kinds of outcomes they achieve.  By ‘deaf’ we mean any young person with any degree or kind of permanent hearing loss.  These young people may or may not use hearing technologies such as hearing aids or cochlear implants.  Some of them will be sign language users.  The project is investigating deaf young people’s personal wellbeing, educational opportunity and attainment, employment, what services they use and how they develop independence and connections with others.

The research is needed because very little is known about life-paths that deaf young people take as they become independent adults or about what helps them or makes it harder for them to succeed.  The objective of the research is to provide information which helps improve services and opportunities for deaf young people in the future.

Yes. The study will publish its results in written English and in British Sign Language (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 as the study progresses.

The research project has been reviewed and approved by the University of Manchester Research Ethics Committee Number 2 [ref:2019-4903-10668] who are responsible for the good conduct of research studies and the protection of those who participate.

The READY study is funded by the National Deaf Children’s Society.

You have been sent this information because your child is still at school, is under 16 years of age and is deaf or partially deaf.  Therefore, in order for your child to take part in the study you would need to provide consent. Your child would also need to agree to take part (this is called assent).  It may be helpful for your child to discuss the study with you to help them reach a decision about whether they would want to take part.

First, your child will be asked to fill in a short questionnaire. It will only take 5 – 10 minutes. The questionnaire asks for information about your child’s age, sex and ethnic background as well as their degree of hearing loss, where they are studying or working and their preferred communication method/language(s). We will also ask you and your child for information about how to contact you again.  The questionnaire can be completed online, on a mobile device or computer. We need this information to help us to decide whether your child is eligible to join the READY research study. The short questionnaire will be available in English, Welsh, BSL and sign supported spoken English. If your child requires a different language you or they can ask the research team for it.

After your child sends us back their answers to the short questionnaire there are three things that might happen.

1. Your child may be invited to join the READY study and we will send them a longer questionnaire to complete. This will take approximately 30 to 40 minutes to answer. The questionnaire can be completed on a mobile device or computer or a paper copy can be sent if preferred. The questionnaire will also be available in Welsh, BSL and sign supported spoken English with subtitles. If a different language is required it is possible to ask the research team. We would like to send this long questionnaire to your child every year for 4 years but each year we will check first whether they still want to take part in the study.

OR

2. Your child will be put on a waiting list to join the study. This means potentially we would like to involve them 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 your child waiting any more than 8 weeks before we contact them again. We will then invite them to fill in the long questionnaire or we will explain why they are unable to be included in the study at this time. If your child is invited to fill in the long questionnaire it will take approximately 30 to 40 minutes to answer. We would like to send this to them every year for 4 years, but each year we will check first whether they still want to take part in the study.

OR

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

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

You child is free to withdraw from the study at any point without having to give a reason. We will provide them with a simple letter that can be sent to us by post or by email to say that they do not want to take part any more.  They do not have to explain why.  However, it will not be possible to remove their data from the project after it has been anonymised. This does not affect their data protection rights.

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

• Your child’s name
• Their sex
• Their ethnic background
• Their age
• Their 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 child’s rights. The law lets us collect and store their personal details because it is “a public interest task” and “a process necessary for research purposes”.

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

Only the research team will have access to information about your child and their 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 child’s 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 something your child has said during participation in the study. For example:

• If, during the study, we have concerns about your child’s safety or the safety of others, we would have to inform the relevant authorities/people.
• If, during the study, your child tells 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 your child provides in the questionnaires will be pseudonymised. This means that a code will be used instead of a name and your child’s named will stored in a different place to the rest of the information they give us.

We will keep the information your child provides for the full 6 years of the research study.  After that time we 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 child’s personal information to the collection of answers that are put in the archive.
• We will not transfer your child’s personal details (such as your name and your contact details) to the archive.

We will ask your child at the end of the study (or sooner, if they decide to withdraw) if we have their permission to keep their name and contact details securely at the University of Manchester for a period of 15 years.  This is because we may want to contact them again in the future about other research studies or to follow up what has happened to them after the READY study has finished.  Your child does not have to agree for us to keep in touch with them. If they do not want us to keep their contact details we will destroy them at the end of their participation in the READY study and tell your child that we have done so.   

You or your child can contact the research team directly.  The details are below.  If you or your child want to 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 contact us 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