Living Well with Multiple LTCs: Patient Information Sheet
I would like to invite you to take part in a study to explore how young people’s experiences of health and social care services and their relationships with others support them to make the changes to live well. Before you decide whether to take part it is important for you to understand what I am trying to do and what it will involve. Please take time to read the following information carefully. Do talk to family and friends and do ask any questions you may have about any part of the study.
Why am I doing this research?
Very little is known about the experiences of young people living with multiple longterm conditions (LTCs) as they navigate many adult care services. How I have chosen to collect information and the questions I will ask, have been selected so that the findings can inform the future planning and delivery of health and social care services for young people living with multiple long-term conditions.
A long-term condition is a health condition that cannot be cured but the symptoms are managed with medication and other treatments.
Why have you been asked?
You have been invited as you meet my research requirements. You are aged between 18-24 years. You are living with two or more long-term conditions and you may have a moderate frailty score. Importantly, you will have experiences of being diagnosed and supported to manage living with your health conditions.
Do you have to take part?
No. It is entirely up to you whether you take part. You will be asked to agree to take part and for interviews to be digitally audio recorded. You are free to stop taking part at any time during the research without giving a reason and your information (data) can be withdrawn up to the point that I start to analyse it. I will remind you of this at the time of the interview. Your care or treatment will not be affected if you do not want to take part or stop taking part in the study.
What will happen to you if you decide to take part?
This study involves being interviewed by me - a post graduate researcher. I will have two interviews with you over the phone. It is important that you have a private space to take the calls so you can talk freely. If you don’t, let me know and I’ll organise a private space for you either on the university campus or in the community and pay back your travel costs.
The first interview will last about 15 – 30 minutes and will involve me asking you about your key life and health experiences. After the interview, I will plot this information as a life grid diagram which will help our discussion at the second interview.
The second interview which will take place a week later will last about 30 – 45 minutes. I will start by sharing with you (sent to you by email at this point in the interview) the life grid diagram and we can check it for accuracy. The interview will involve me asking some questions about your experiences and what they meant to you. There are no right or wrong answers.
I will write up the interviews and you can check them for accuracy. With your permission, some anonymised quotes may be used in publications I write. These quotes will not refer to you by name at any point. Before the first interview you will be asked some personal questions such as your age and where you live and to give verbal consent. I will ask you for your permission again before the second interview.
Once you let me know you would like to take part, I will contact you to arrange the interviews at times that are convenient to you.
What are the benefits of taking part?
Your responses will be used to influence the design and delivery of health and social care services for younger people living with multiple long-term conditions. However, I cannot guarantee that services will be improved as a result of your participation and/or the findings from the study. I will offer you a £20 “thank you” Amazon e-voucher for your time in taking part in this study.
Points to think about
There are no foreseeable risks to taking part in this study. However, if the interview raises issues for you that cause you to become upset, I will talk with you to agree what to do. We could skip parts of the interview or stop it. If you want, I will contact someone to support you. I will also provide you with a list of services that could help and support you.
What if something goes wrong?
If you do not feel happy with the interviews you can stop at any time without giving a reason. If you have any complaint or concern about any part of the study, you can contact my lead supervisor or the Head of the School of Applied Social Sciences.
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