I would like to invite you to be part of this research project. Before you decide, make sure you understand why the study is being conducted and what it will require before you decide to participate. Please read the information provided carefully and feel free to talk about it with others. You may contact a team member if you have any questions or need more details.

What is the purpose of the research?

People handle challenges in various ways, and the way we deal with our thoughts, emotions, and feelings can affect how we handle difficult circumstances. This study looks into how carers of people with life-long health conditions like Duchenne Muscular Dystrophy (DMD) manage the demands of caregiving. It also wants to see if there is a link between how caregivers adjust to change, see themselves, and their general well-being. The study is being conducted by Sophie Clarke, a Trainee Clinical Psychologist at Newcastle University, under the supervision of Chloe Geagan, a certified Clinical Psychologist.

You will fill out a few questionnaires looking at health and wellbeing. You will also be asked to give (us) some information about yourself. It won't take more than 25 minutes of your time. We ask that you answer questions with honestly and openness. Afterwards, you will be given more details about why we are doing this research. You get to choose if you want to take part or not. If you decide not to participate, there won't be any consequences. If you decide to join, you'll be asked to sign a consent form before answering any questionnaires. Even if you agree to participate, you can always change your mind without having to provide a reason. Just close the browser without clicking 'submit' or contact the researchers to have all the data they collected destroyed.

Are there any disadvantages of taking part? 

Taking part in the research study may cause various uncomfortable emotions or distress. Our researchers are available to talk on the phone and offer help. Feel free to reach out to us for support. 

What are the benefits of taking part? 

You will be adding to our understanding of caring for someone with a long-term health condition like DMD. This information will help us improve support for caregivers and enhance the well-being of families. As a way of saying thank you for taking part, you'll have a chance to win a £25.00 voucher of your choice at the end of the survey. 

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This study was approved by the Faculty of Medical Sciences Research Ethics Committee, part of Newcastle University’s Research Ethics Committee. This Committee includes members who are internal to the faculty. This study was reviewed by members of the Committee, who must provide impartial advice and avoid significant conflicts of interests.

Newcastle University will be responsible for managing the data in this project. The NCL Data Protection Office supervises all research activities that involve handling personal data. If you have any questions or concerns, you can reach them at rec-man@ncl.ac.uk. The personal data will be processed according to the purposes mentioned in this notice. Your responses will be kept anonymous during data collection, but your Prolific ID will be used to connect you to the data so that you can enter the prize draw. Once the data has been used for this purpose, your personal information will be deleted, and the data will be stored anonymously, making it impossible to trace back to you. Each participant will be assigned an anonymized ID number for their completed questionnaires. All scores will be securely stored on a password-protected database owned by Newcastle University. If you choose to withdraw from the study at any time, all your information and scores will be deleted without needing to provide a reason. Otherwise, the university will retain the findings for 10 years. After the research is complete, the results will be documented in a doctoral thesis for publication. During this process, all information will be kept confidential and presented in a way that protects the participants' identities.

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