Participant Information Sheet
What is this study about?
We would like to learn more about the experience of young people providing unpaid care, support, or assistance for a family member or close friend.
You are invited to be in this research study because you are a young person living in either the United Kingdom, Sweden, Switzerland, Slovenia, Italy, or the Netherlands. We want to learn more about young people who have family member(s) or close friend(s) with a health-related condition that requires care, for example, a physical or learning disability, mental illness, chronic health issue, and addictions. “Caring for someone” may include activities like cleaning the house, helping another person bathe or dress, or helping another person with their medications—and many more possible tasks. It is also true that you may take this survey and you do not have a family member or close friend for whom you care for—this is okay, and we are interested in your answers too.
What will happen during the study?
If you agree to participate in this study, you will be asked various questions about how you spend your typical day. We are interested in learning about what kind of activities you do every day. We’ll also ask you about how the activities you do every day may or may not have impacted the things you do in life—like school or work. This is called a ‘survey’. The survey should take 10 minutes to complete.
If at any time during the survey, you would like to stop taking the survey, you may do so. Nothing bad will happen and no one will be upset with you.
What are the benefits of this research?
By taking part of this study, you have the potential to help young people around Europe who care for a family member by spreading awareness. By sharing your experience, you can help other people understand what life is like for you and can potentially improve the lives of other young people who provide care.
How will my privacy be protected?
We respect your privacy and confidentiality. By taking part in this research, you can feel safe that we will never identify you by your real name. Any reference made to you within the final report or subsequent publications will have been anonymised and pseudonyms will be used (i.e., a fake name). By electronically signing this consent form, you are agreeing to allow third parties to review the data and/or research findings. By electronically signing this consent form, you are also agreeing for us to analyse the data in the future for further research.
I will keep any identifying information--like your name or email address if you chose to provide it-- separate in a file on the University of Sussex’s secure servers. After a number of years, this will be destroyed. So, you will not be identified or be identifiable in this survey. Everything you say will be anonymous.
Do I have to participate?
You do not have to be in this study if you do not want to. This means your participation is voluntary. You have the opportunity to withdraw at any time up to and during the survey, by exiting the survey page. If you choose to withdraw, the data gathered up to the point of withdrawal will be immediately destroyed.
Also, we understand that sometimes when we think about our feelings, it can feel difficult. If any of these questions are making you feel upset or if your feelings feel too much, it is okay to just stop answering the questions. If you want to talk to someone about any difficult feelings, please ask your carer’s service or call Childline on 0800 1111 .
Who can I contact with questions about this study?
You can contact us:
Professor Saul Becker (Researcher)
Tel: +44 01273 876645 or Email: Saul.Becker@sussex.ac.uk
Feylyn Lewis (Researcher)
Tel: +44 01273 873565 or Email: F.M.Lewis@sussex.ac.uk
Who else can I contact with questions about my rights as a research participant?
Dr. Nigel Marshall
Social Sciences Cross- School Research Ethics Committee representative, University of Sussex
Telephone number: +44 1273 877649
Email address: N.A.Marshall@sussex.ac.uk
|
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 754702” |