Research Ethics Committee Reference Number: UREC Ref: 22/NAH/002

Title of Study: CYP as One – Investigation in how to further support the community through digital innovation

You are being invited to take part in a research study. You do not have to take part if you do not want to. Please read this information, which will help you decide.

1. What is the purpose of the study?

We created a technology that is a unique, interoperable, web-based platform which can be seen at http://www.seftonliverpoolcamhs.com. The outcome of a project we refer to as Children & Young People (CYP) as One. By doing the current study, we wish to further facilitate digital mental health care and support digital mental health services, for children and young people. We wish to develop qualities and solutions via initial ideas to platform related challenges, identified by participants during the previous session, and improve the existing design by assessing how the product fits into everyday life.

Using 2 sessions of creative focus groups, this study hopes to answer the following questions…

• What are the perceptions of participants on the platform?

• What would participants want from this platform?

• What do communities require, to ensure their inclusion in these technologically developing services?

2. Why have I been invited to participate?

The CYP as One digital platform, aids in the necessary uptake of children and young people into mental health services.

Therefore, you have been invited because,

• You are between 16- 19 years old, and your insight can support your own and younger generations.

• Or you are a parent and have a child who is younger than the age of 16 years, and your input is directly relevant to the age group we focus on.

Unfortunately, this time we wish to exclude individuals from the study, who have intellectual impairment (e.g., learning disability) or are currently diagnosed with any form of mental illness.

Please note, this study is based in the United Kingdom (UK), and we will be able to recruit participants residing in the Liverpool and Sefton areas (UK) only.

3. Do I have to take part?

No. You can ask questions about the research before deciding whether to take part. If you do not want to take part that is OK. We will ask you to sign a consent form and will give you a copy for you to keep. You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. You may withdraw from the study by contacting the Research Assistant on the project (Kristof Santa – k.santa@ljmu.ac.uk).

4. What will happen to me if I take part in a workshop/ focus group?

If you would like to take part, please contact Kristof Santa (Research Assistant) by email at k.santa@ljmu.ac.uk. You will be sent via email this participant information sheet in a document format to keep for your records. Also, a consent form; screening and demographic questions to be completed and sent back by email. The completion and return of these 2 documents are necessary to participate in the focus group.

Each focus group will be 1 hour long. You will be offered regular breaks as necessary.

We will provide you with a £25 worth of voucher as a financial incentive for your participation in each focus group, after a focus group concluded.

Altogether, we will conduct 2 focus groups for this project and we would like to re-recruit you for this project in the near future to participate. Therefore, we will keep hold of your contact details until we get in touch with you again.

The focus groups will be held online via Microsoft Teams, instead of in-person. (https://www.microsoft.com/en-us/microsoft-teams/group-chat-software), the software is free to use. Therefore, access to a smartphone; laptop; tablet or a device to install the software and to participate in the focus group, will be required.

The main topic of the focus group will be the digital platform that supports children`s and young people`s necessary uptake into mental health services. During the next focus group, you will join discussions on qualities of the type of product or service to be developed, based on challenges identified by participants in relation to the platform. The task will be explained in more detail during the start of the focus group.

The focus groups will involve informal conversations among participants, guided by members of the research team. The objectives will be to hear from everyone participating during the focus groups and engage in conversations. The participants will have the opportunity to build on what others say, to explore various viewpoints. This will be facilitated by providing all focus group participants with a welcoming environment and motivation to feel free to follow-up on ideas.

The online focus groups will be audio recorded. We will keep the audio recordings to later review ideas and comments gathered during the focus groups.

The time and date of the focus groups will be confirmed by email.

5. Will I be audio recorded and how will the recorded media be used?

Yes, on a group basis. However, you are free to decline to be audio recorded. The audio recording is essential to your participation, but you should be comfortable with the audio recording process. You are free to leave the focus group at any time and therefore withdraw your participation.

The audio recordings of your activities made during this study will be used only for analysis. No other use will be made of them without your written permission.

6. Are there any potential risks in taking part?

Participating in the research is not anticipated to cause you any disadvantage or discomfort. The potential physical and/or psychological harm or distress will be the same as any experienced in everyday life.

7. Are there any benefits in taking part?

Exploring the perspective of our participants will increase awareness and add to previous research and knowledge by enabling in-depth understanding of challenges experienced, to inspire and form the basis for quality improvement and development of mental healthcare.

Parents of under 16-year-old children, can positively contribute to their children`s future by improving the platform and subsequently the likelihood of quality care if the need arises for their children. 16 -19-year-olds will improve the platform based on their individual experiences and help their own and younger generations in the process. Health professionals` expertise will also aid in the future mental health care of children and young people, whilst potentially improving their own working conditions and optimising workflows in mental health settings.

8. Payments, reimbursements of expenses or any other benefit or incentive for taking part

Each participant will receive a £25 worth of e-voucher, as a financial incentive for each focus group they attend.

9. What will happen to information/data provided?

The information you provide as part of the study is the study data. Any study data from which you can be identified (e.g. from identifiers such as your name, date of birth, audio recording etc.), is known as personal data. Your participation in this study will involve the collection/use of personal data. However, the study data collected/used will NOT include more sensitive categories of personal data (special category personal data) such as your race; ethnic origin; politics; religion; trade union membership; genetics; biometrics (where used for ID purposes); health; sex life; or sexual orientation.

We will keep personal data safe and secure. People who do not need to know who you are will not be able to see your name or contact details. The personal data collected will include:

• • Contact details. With your agreement, we would like to store your contact details so that you may be contacted about future opportunities to participate in focus groups, in relation to the current project.

• • A record of consent (which will include your name). Necessary for participation.

• • Study data. We will use a code/pseudonym so that you cannot be directly identified from the data. Study data will include audio recording (which includes your voice). Study data; records of consent will be kept for after the study has finished. Once we have finished the study, we will keep some of the data so we can check the results.

If you participate in an online focus group, your participation in this research will be recorded via the Microsoft Teams software and your personal data will be processed by Microsoft. This may mean that your personal data is transferred to a country outside of the European Economic Area, some of which have not yet been determined by the United Kingdom to have an adequate level of data protection. Appropriate legal mechanisms to ensure these transfers are compliant with the Data Protection Act 2018 and the UK General Data Protection Regulation are in place. The recordings will be removed from the above third-party platform and stored on LJMU managed file storage as soon as possible following the completion of data collection. Also, we will only keep the audio recordings to later review ideas and comments gathered during the focus groups

We will not attempt to capture the IP address or any other information that is not voluntarily provided Data may be stored on backups or server logs beyond the timeframe of this study. Although every reasonable effort has been taken, confidentiality during actual internet communication procedures cannot be guaranteed.

Email is an unsafe form of communication for private responses. This is because email can be easily hacked. Therefore, you should only take part in the study if you or your company are prepared for your responses to be made public, even though the research write-up will not link any responses to individuals or companies.

Personal data will be returned indirectly to the investigator; therefore, whilst the data is not in the investigator’s possession, the investigator will be unable to control access to your personal data. It is possible that if someone other than the investigator viewed the personal data, that you could be disadvantaged in some way. You should not participate if this risk is not acceptable to you.

Before your personal data is transferred to secure storage there is the possibility that the investigator could lose control of authorised access. We will take steps to mitigate the risk of your personal data being viewed by someone outside of the study team by [investigators to provide details]. You should not participate if this risk is not acceptable to you.

We will not tell anyone that you have taken part in the focus group, although there is of course a possibility that another member of the group might recognise you. All members of the focus group will be asked to respect the confidentiality of their fellow participants.

We will write our reports in a way that no-one can work out that you took part in the study.

We would like your permission to use direct quotations but without identifying you, in any research outputs. We will use a code/pseudonym so that you cannot be directly identified from the data.

The Investigator will keep confidential anything they learn or observe related to illegal activity unless related to the abuse of children or vulnerable adults, money laundering or acts of terrorism. In certain exceptional circumstances where you or others may be at significant risk of harm, the investigator may need to report this to an appropriate authority. This would usually be discussed with you first. Examples of those exceptional circumstances when confidential information may have to be disclosed are:

• The investigator believes you are at serious risk of harm, either from yourself or others

• The investigator suspects a child may be at risk of harm

• You pose a serious risk of harm to, or threaten or abuse others

• As a statutory requirement e.g. reporting certain infectious diseases

• Under a court order requiring the University to divulge information

• We are passed information relating to an act of terrorism

10. Who is organising the study?

This study is organised by Liverpool John Moores University. The focus groups involve improving and changing a product or service, although participants will be provided with no financial gain, other than the financial incentive provided to each participant for attending a focus group regardless of the project`s proceedings.

11. Whom do I contact if I have a concern about the study or I wish to complain?

If you have a concern about any aspect of this study, please contact Kristof Santa – Research Assistant (k.santa@ljmu.ac.uk) or Dr. Rafaela N. Ganga - Principal Investigator (R.NeivaGanga@ljmu.ac.uk), and we will do our best to answer your query. You should expect a reply within 10 working days. If you remain unhappy or wish to make a formal complaint, please contact the Chair of the Research Ethics Committee at Liverpool John Moores University who will seek to resolve the matter as soon as possible:

Chair, Liverpool John Moores University Research Ethics Committee; Email: FullReviewUREC@ljmu.ac.uk; Tel: 0151 231 2121; Research Innovation Services, Liverpool John Moores University, Exchange Station, Liverpool L2 2QP

12. Data Protection

Liverpool John Moores University is the data controller with respect to your personal data. Information about your rights with respect to your personal data is available from:

· https://www.ljmu.ac.uk/legal/privacy-and-cookies/external-stakeholders-privacy-policy/research-participants-privacy-notice

13. Contact details

Research Assistant: Kristof Santa

LJMU Email address: k.santa@ljmu.ac.uk

LJMU School/faculty: Nursing and Allied Health/ Faculty of Health

LJMU Central telephone number: 0151 231 2121

Principal Investigator: Rafaela N. Ganga

LJMU Email address: R.NeivaGanga@ljmu.ac.uk

LJMU School/faculty: Nursing and Allied Health/ Faculty of Health

LJMU Central telephone number: 0151 231 2121

Thank you for reading this information sheet and for considering taking part in this study.