INFORMATION SHEET FOR PARTICIPANTS
REC Reference Number: HR-17/18-7535
YOU WILL BE GIVEN A COPY OF THIS INFORMATION SHEET
Title of study
Improving the Health of Young People – Evaluation & Intervention Project (The HYPE Project) – Understanding the health and social care needs of young adults following the Coronavirus/COVID-19 Pandemic (HYPE_COVID-19)
Project Lead Professor Stephani Hatch
YOU WILL BE GIVEN A COPY OF THIS INFORMATION SHEET
You have been asked to participate in this original research project organised by King’s College London and funded by the South London and Maudsley NHS Trust and King’s College London National Institute of Health Research Biomedical Research Centre.
Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you wish to know more.
You should only participate if you want to; choosing not to take part will not disadvantage you in any way. Before you decide whether you want to take part, it is important for you to understand why the research is being done and what your participation will involve.
Improving the Health of Young People – Evaluation & Intervention Project (The HYPE Project) Understanding the health and social care needs of young adults following the Coronavirus/COVID-19 Pandemic (HYPE_COVID-19).
We invite you to participate in an on-going research project following the Coronavirus/COVID-19 pandemic which aims to improve the health of young people and their experience of health service use. This information will help us to understand how to make improvements in accessing health services and understand what types of resources are needed to promote health and well-being in the community. This research is vital in helping to understand the wider psychological, social and health impact of this pandemic and better prepare us for adverse events in our current and future practice both nationally and internationally.
What is the purpose of the HYPE_COVID-19 study?
The primary aims of this project are:
- To identify how the mental health of young adults is changing with increasing duration of social distancing and/or isolation during the Coronavirus/COVID-19 pandemic.
- To identify the stressors young adults are experiencing, and what strategies/resources are they, their peers, their families, and their communities using to get through this period.
- To identify and target resources to support young adults during the Coronavirus/COVID-19 pandemic.
Why have I been invited to take part?
We are asking residents in the UK aged 16 years and older to help us by taking part in this project.
Do I have to take part?
Participation in the project is entirely optional. If you decide to take part, you are still free to withdraw at any time and without giving a reason. Withdrawal from the study will not affect the treatment you receive from the NHS or legal rights in any way. Participants can withdraw from The HYPE Project at any given time and ask for their survey data (with the exception of anonymised transcribed interview data) to be deleted within one month after completing the study. In order to withdraw, please contact either Dr Gunasinghe or the HYPE study team whose details are listed below.
What will happen to me if I take part?
If you agree to take part, you will be asked to complete a consent form. You will then be asked to:
- Fill in a short questionnaire about your physical and mental health and some events that you may or may not have experienced since the Coronavirus/COVID-19 pandemic. This will take about 10 minutes.
- You will be re-contacted fortnightly (every two weeks) and asked to complete follow-up surveys and provided with information about health and social care resources. We also may ask you to answer some questions about your experience of using the online research and resource platform together with recent health and social care service use. This will take between 10 and 20 minutes.
What are the possible benefits and risks of taking part?
There are no other direct benefits from participating in this study. However, we believe that by participating, this will allow us to explore the needs of young people. This will aid future policies and improvements to health services that will help people in the community.
We hope that the information you provide us with can help us to provide appropriate guided online resources to promote health and well-being. These will be revised based on the feedback from our participants. Your anonymised data may be archived for use by other researchers in other research studies.
You can also receive a copy of our final report describing the main findings from this study. However, this is optional, and you do not have to be sent any additional information regarding this study in the future if you do not want to.
There are no major risks involved in taking part in this study. We will ask you a range of questions regarding your health and various stresses and life experiences. Some of these questions touch on sensitive areas. If you feel uncomfortable with any of the questions you do not have to answer them. If you want to stop the survey you can do so at any time without giving us a reason. In addition, you may also withdraw any information you provide us with, within one month after completing the study. This can be done over the telephone, contact details of the research team can be found at the bottom of this letter.
Will my taking part be kept confidential?
We take confidentiality very seriously. All personal identifiable information about you is regarded as strictly confidential and it will be stored separately to the information you provide as part of the study. All participants will be given an anonymous identification number which will be used as an identifier throughout the study. Only the researchers directly involved in this study will be able to trace the information you have given to your personal details.
Information provided during the survey will be completely confidential. Confidentiality might be breached only when your life is considered to be at risk, for example in cases where suicidal thought and plans are disclosed. If this is to happen, our aim will be to make sure you get all the help and support you may need. We can provide you with some support by facilitating an appointment with your GP or putting you in touch with an expert from the study team.
If you agree to take part in this project you will be asked whether you are happy to be re-contacted about participation in our online resources, future research projects and community-based events. This is entirely optional, and you do not have to agree to this. This decision will not affect your participation in the current survey.
How is the project being funded?
This study is funded by the National Institute for Health Research Maudsley Biomedical Research Centre Nucleus.
What will happen to the results of the study?
We would like to discuss findings from completed studies in public meetings which we will inform our volunteers via The HYPE Project website, a regular newsletter and through our partner organisations (inclusive of social media channels). Results will also be disseminated through scientific publication, conference/workshop presentations and user/carer groups.
The volunteers’ names will not be mentioned in any report or publication, and data published will be presented at the group level to minimise risks of tracing to any individual. We anticipate that these samples will contribute to research for many years to come. Future research involving the information volunteers supplied may involve other research groups seeking to understand diseases. These could be our collaborators or independent researchers from other academic and/or industry groups. Anonymised information would be made available only to valid research groups with full ethical approval for the research undertaken.
Who should I contact for further information?
If you have any questions or require more information about this study, please contact me using the following contact details: Dr. Cerisse Gunasinghe – email: cerisse.gunasinghe@kcl.ac.uk, Tel: 0203 8480462, Address: Department of Psychological Medicine, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, 16 De Crespigny Park, PO Box 84, London SE5 8AF or email The HYPE Project team at hype@kcl.ac.uk
What if I have further questions, or if something goes wrong?
If this study has harmed you in any way or if you wish to make a complaint about the conduct of the study you can contact King’s College London using the details below for further advice and information: The Chair, Psychiatry, Nursing & Midwifery Research Ethics rec@kcl.ac.uk
Thank you for reading this information sheet and for considering taking part in this research.