Participant Information Sheet
1. Research Project Title
Understanding the relationship between self-management and overall wellbeing in patients with pain and in patients with myotonic dystrophy.
2. Invitation
You are being invited to take part in this research project. Please take time to read the participant information sheet before you decide to participate, it is important to understand what the aim of this project is and what it involves. If you have any questions please contact the research team, using the contact details provided below.
3. Aim of the project
This project aims to understand the relationship between self-management and overall wellbeing in patients with myotonic dystrophy and in patients with general pain. Thus, this study is to find if there is a link between self-management skills of pain and overall wellbeing and to understand if the opinions of self-managing pain in myotonic dystrophy patients and patients experiencing general pain are different and how that links to their overall wellbeing.
Please note, this study does not intend to diagnose depression, anxiety, or any other mental health condition.
4. Why have I been chosen?
This study requires patients with either myotonic dystrophy or general pain like fibromyalgia, back pain, or any other pain conditions, for over 3 months or more and over the age of 18 years to participate.
5. Do I have to take part?
No, it is your decision to participate or withdraw from this study. If you do decide to participate and change your mind midway, you can withdraw from the study at any point.
6. What do I have to do?
You will be asked to sign a consent form, after reading the participant information sheet, after which you will be asked to answer questionnaires regarding how important you think self management is and how confident you are in managing your pain or other physical symptoms; how much your symptoms affect your day to day life on a scale of 0-10 and how your overall wellbeing has been over the last 2 weeks. This study will take about 15-20 minutes to complete.
7. What are the risks of taking part?
There are no risks or disadvantages to doing this study. However, if any questions, are distressing, please feel free to not answer them or withdraw from the study.
8. What are the possible benefits of taking part?
While there are no potential benefits, your data will help us develop an understanding of how self-management of pain effects myotonic dystrophy patients and in patients with pain. This will be helpful research in understanding the negative effects of the disorder in the mental health aspect.
9. Will my data be kept confidential?
Yes. Any personal information like date of birth, name, address, etc will remain anonymous. However, whatever data you enter in the survey will be used, since the data is anonymous, it is untraceable and thus, data already entered in cannot be withdrawn.
10. What will happen to the results of the research project?
The results of this study will be used by the student researcher for BSc Psychology research project which will be submitted as a written report. All identities will remain anonymous.
11. Who has ethically reviewed this project?
This project has been ethically approved by the Undergraduate Psychology Ethics Committee of Newcastle University on 04/01/2022. (Ref: 16594/2021).
12. Contact information for any concerns/ enquiries.
Rhea Thakur (r.sandeep-thakur1@newcastle.ac.uk)
Chris Penligton (chris.penlington@newcastle.ac.uk)
Thank you for taking your time to read the Participant Information Sheet. If you consent to participate in the study, please continue the survey and answer the questions.