Participant Information

You are invited to participate in a research project. The following information is to help you decide if you want to take part. You can discuss this with people outwith the project if you want. You do not have to decide straight away
Background to the study
This project is being run by mental health charity Penumbra, and the University of Abertay Dundee, in collaboration with GAMH, Barnardos, Jami and Aberlour.

Penumbra are developing a new questionnaire called Y.ROC, which has been designed to measure how you are feeling, by talking about how things have been going in different areas of life over the last 3 months.

Y.ROC is a measure of wellbeing and personal recovery. Wellbeing means living and feeling well, for example by feeling comfortable, healthy and happy. Personal recovery means being able to live a life that feels good, whatever that looks like to you, even when things have been tough.

We hope that Y.ROC will be used within support services to help you to speak comfortably and openly about how you are feeling and what you want, with the people who support you.

To help make this questionnaire as useful and nice to use as possible, we need to test it to see if it valid and reliable. Valid means that it measures what it says it measures (in this case, wellbeing and personal recovery). Reliable means that it will always give the same results when nothing has changed. We also want to know what you think of Y.ROC, so this testing will give you the chance to try it out and let us know your thoughts and opinions on Y.ROC.

What will I be asked to do?
If you choose to take part, you will be asked to complete Y.ROC. Y.ROC is made up of 12 short questions which each ask about different parts of your life. You will asked to think about how things have been going for you in each of these areas over the past 3 months, and to rate how you feel about this. You will also be asked during the session to complete a few other short questionnaires:
• Demographics questionnaire: These are basic questions about you, for example how old you are and who you live with. These questions help us to understand who Y.ROC works best for, and where it may need changing. The questions you will be asked refer to:
o Your age
o Your sex
o Your mental health (including any diagnoses, and length of any mental health issues)
o Who you live with (e.g. mother/uncle/foster parents - not names)
o What sort of place you live in
o Your employment status (e.g. if you are in school or go to work)
• 2 wellbeing and recovery questionnaires (WEMWBS & REQUEST): these will ask how you have been feeling and what has been going well in your life recently.
• Feedback questionnaire: This will ask you what you think of Y.ROC.

We are also interested to know how Y.ROC performs over time. If you want to, there will be the chance to complete Y.ROC again one week later to help test how reliable it is.
Must I take part?
No, you don’t have to take part, it is completely up to you, and you should do so only if you want to - participation is entirely voluntary. If you do choose to take part, you are free to change your mind later – even during or after taking part in the study, until the findings of the study are reported, and you do not need to tell us why. If there are any questions you don’t want to answer, that’s fine, you don’t have to; you can just answer the questions that you want to, and you don’t have to complete the questionnaire again a week later. This is an extra bit of the study, but is entirely optional and won’t affect the results.

If you want to talk to anyone about your involvement in the study or withdrawing from the study, you can either get in contact with the research team – our details can be found on the final page of this document – or talk to any of the workers at the service you attend.
Confidentiality/Anonymity
Your data will be pseudo-anonymised for the duration of this study, and fully anonymised once analysis of the data is complete. This means that once you have taken part, your data will be identified only by a randomly allocated ID number, and information that could identify you will be stored separately in a secure file. Once the project is completed, your data will be fully separated from all identifiers including the ID.

The information that you (and your parent/carer if they are taking part) provide during this study is confidential. This means that we will not share any of the information that you or your parent/guardian provide with you or anyone else. Your parent/guardian will not be granted access to your data without your consent, unless it is believed that you are at considerable risk in which case specific information relating only to that risk may be shared.

Any answers that you give or discussions you have during the study will only ever be reported on anonymously and in an aggregated format. This means that your individual results will never be reported on by themselves, or in a way that could identify you.
If you do want to talk more about your answers, or want to talk about anything about the study, either before or after it has taken place, please talk to Abertay's counselling service, details of which can be found at: https://www.abertay.ac.uk/life/student-support-and-services/counselling/.

You can also call Breathing Space Scotland on: 0800 83 85 87 or visit their website: https://breathingspace.scot/ if you would prefer to talk to someone confidentially.
What will happen to the information collected in the study?
The information collected in the study will be used to help develop Y.ROC as a tool to measure personal recovery outcomes in mental health services.

The information collected will be stored securely by Penumbra and the University of Abertay. Data will be allocated a code so that information will be anonymised. Any identifying information will be stored separately. Digital data will be stored on Penumbra’s and the University’s secure networks, to ensure that it is suitably protected against accidental loss or damage and against unauthorised access. Non-digital data will be stored in a locked cabinet. It will not be possible to identify any individual who takes part in this research as only the pooled responses of all participants will be analysed.

Information collected in this study will be used to help develop Y.ROC and tools such as guidance and training to support staff to use it well. Findings from the research will be reported via journal articles, a project report and summary report, conference presentations and the Penumbra and irocwellbeing websites. Findings will only ever be reported in an aggregated format. This means that no individual participant’s data will be highlighted or identifiable within any aspect of the reporting.

Researchers are obliged to retain research data for up to 10 years’ post-publication, however your anonymised research data may be retained indefinitely (e.g., so that researchers engage in open practice and other researchers can access their data to confirm the conclusions of published work). Researchers retain consent forms for as long as we continue to hold information about the data subject and for 10 years for published research.
What happens now?
If you choose that you would like to take part, click next at the bottom of the page to progress to the consent form and the rest of the survey.

If you have any questions at all, you can talk to me directly (Bridey Rudd: bridey.rudd@penumbra.org.uk 01314752577) or contact my colleagues (Scott Hardie; Stephen Finlayson) on the details listed below.

Many thanks,

Bridey Rudd, Principal Investigator
Legal Statement
Penumbra and Abertay University are committed to protecting the privacy and security of your personal data in accordance with the Data Protection Act 2018 (or any successor legislation) and (EU) 2016/679 the General Data Protection Regulation (“GDPR”) (and any other directly applicable EU regulation relating to privacy) (together “Data Protection Law”). This research has been approved by the Ethics Committee of Abertay University. The research team adhere to the principles of the Declaration of Helsinki, 2013 and the principles of the General Data Protection Regulations (GDPR). The Abertay University Privacy Notice for Research Participants is available at https://www.abertay.ac.uk/legal/ . General information on Data Protection law is available from the Information Commissioner’s Office.

For research involving living humans, the Data Controller adheres to, and collects, processes and handles/archives data in compliance with:

Article 6 (1) e: processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.
Article 9 (2) j: processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

Where applicable, this form is prepared in consultation with Article 13 of EU GDPR legislation, detailing the information to be provided where personal data are collected from the data subject.

If you have any complaints/queries as a result of taking part in this research you may address them to the Researchers in the first instance (contact details above), researchethics@abertay.ac.uk, or to the University Data Protection Officer if necessary.
Contact details

Bridey Rudd, Principal Investigator
Penumbra
57 Albion Road,
Edinburgh
EH7 5QY
Bridey.rudd@penumbra.org.uk
01314752586
07799545050

Stephen Finlayson, Head of Innovation & Improvement
Penumbra
Stephen.finlayson@penumbra.org.uk
01314752586
07717541968

Dr Scott Hardie, Director of Research & Research Degrees,
School of Social & Health Sciences,
University of Abertay Dundee,

(t) 01382 308587
(e) S.Hardie@abertay.ac.uk

Abertay Counseling Service:
Support Enquiry Zone (SEZ) on Level 1 of the Library (open Mon-Thurs 0830-1200, Fri 0830-1900, Sat-Sun 1000-1700).
(e) counselling@abertay.ac.uk

Breathing Space Scotland:
Open: Weekdays - Monday to Thursday 6pm to 2am; Weekend -Friday 6pm to Monday 6am.
https://breathingspace.scot/
(t) 0800 83 85 87.

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