Participant information sheet
1. Research Project Title: Evaluation of "Managing migraine: A Guide for Parents"
You are invited to participate in a web-based online survey on evaluating the acceptability and impact of the “Managing migraine: a Guide for Parents” online course. You have been invited to participate because you are a parent of a child experiencing migraine, and have engaged with the online course. This survey is part of a research project being conducted by Dr Line Caes an Associate Professor at the University of Stirling. It should take approximately 20-30 minutes to complete. Please read through these terms before agreeing to participate below.
2. Background and aims of project
Migraine is the most common experience among young people. Young people depend on their parents for help and care with their migraine experiences, but parents may not know how to best support their child. Furthermore, parents themselves can feel overwhelmed and stressed by their child’s migraine experiences and need support to cope with the emotional impact of caring for a child with migraine. To reduce the impact of chronic pain on young people’s and their parent’s lives, it is vital to support parents in their caregiving responsibilities.
To provide such dedicated support to parents of young people living with migraine, Happyr Health developed the online course "Managing migraine: A Guide for Parents", which consists of 6 online modules for parents to go through at their own time, including various activities, work sheets and links to supportive organisations. The 6 modules cover
1. Introduction to the course
2. Basic knowledge about migraine (including the role of the brain, types and symptoms of migraine, and migraine attack phases)
3. Chronic pain management (highlighting the important role of emotional wellbeing)
4. The impact of migraine experiences on school and social life (including the importance of parental wellbeing)
5. The impact of lifestyle factors (e.g., diet, exercise, and sleep) on migraine symptoms
6. Pain coping techniques (e.g., relaxation techniques, healthy habits).
The main aim of this study is to evaluate the how acceptable parents perceive the online course and how the course impacts parental knowledge of and behaviour in response to their child’s migraine experiences.
For more information about ©2022 Happyr Ltd check the developer’s website https://happyrhealth.com, or on social media –twitter https://mobile.twitter.com/HappyrHealth and Facebook https://m.facebook.com/HappyrHealth.
3. Why have I been invited to this study?
For this study we are looking for parents of a young person aged between 6-18 years of age who experience migraine, and who has engaged with the "Managing migraine in children - Parent online course" .
4. Do I have to take part?
No. You do not have to take part and if you do decide to take part, you can withdraw your participation at any time without ever needing to explain. You may refuse to take part in the research or exit the survey at any time without penalty by pressing the ‘Exit’ button or closing the browser. You are free to decline to answer any particular question for any reason – we have included a ‘prefer not to say’ option. If you wish to withdraw, we will not collect any more data from you and delete your data from the dataset. To withdraw your data after completing the survey, please email the researcher (Dr Line Caes) at line.caes@stir.ac.uk with your unique identifier (which will be given to you after providing consent to take part) within 2 weeks of participating.
5. What will happen if I take part?
In taking part in this study, you will be asked to engage with the "Managing migraine: A Guide for Parents" at your own pace and preference, which means you do not have to complete the full course if you don’t feel all the modules are relevant to you. To be able to take part in the study you should have completed at least 1 module, and you can complete as many modules as you prefer.
Once you feel you are finished with the online course, even if you don’t feel the need to go through all the modules, you will be asked to complete an online questionnaire which asks about how liked the content and features of the online course, the knowledge you potentially gained through the online course and which behaviours you are considering to change by going through the online course. Completing the online questionnaire should take 20-30 minutes.
6. Are there any risks in taking part
It is possible that completing the online course and questionnaire may cause emotional discomfort. If you need any further support, please contact any of the supportive charities below:
https://www.nationalmigrainecentre.org.uk
https://migrainetrust.org
https://americanmigrainefoundation.org
https://headaches.org
https://headacheaustralia.org.au
http://migraine.ie
7. Are there any benefits in taking part?
By engaging with the "Managing migraine: A Guide for Parents" we hope you might gain a better understanding of your child’s migraine experiences, their impact, how to effectively manage your child’s migraine experiences and thereby support your child’s and your own wellbeing. Furthermore, by providing your feedback you make an important contribution to improve the course for other parents.
8. Payments
To thank you for your participation and time, you will be entered into a draw to win one of 5 £20 Amazon vouchers. If you wish to be entered in the draw, you will be asked to leave your email address and name after completing the survey. This contact information will be kept in an excel spreadsheet and stored separately from the data, securely and password protected.
9. Legal basis for processing personal data
As part of the project, we will be recording personal data relating to you and your child. This will be processed in accordance with the General Data Protection Regulation (GDPR). Under GDPR the legal basis for processing your personal data will be public interest. We will also be processing your sensitive categories of personal information relating to your health and the health of your child for research purposes in the public interest.
10. What happens to any information I give?
All information and data collected will be kept confidential and only be accessible by the research team. Your name will not be gathered, and all participants will be assigned a number/code instead. Your IP address will not be stored. Study data will be stored at the University of Stirling on Dr Caes’ OneDrive account, which is automatically backed up each day and accessed using password protected PCs or laptops. Any contact information (e.g. email address to be part of the draw for the vouchers or to receive a copy of the findings), will be kept in an excel spreadsheet and stored separately from the data, securely and password protected.
Only the anonymised result summaries will be shared with collaborators at Happyr Health using the University of Stirling’s Microsoft Office 365 secure system, which is GDPR compliant.
The data will be used to write up a report, which will be publicly available on the Happyr Health website, and a peer-review journal article. Data will be kept on the OneDrive account while writing up the reports, and then be preserved securely on DataSTORRE for 10 years post publication, starting from the date of the publication of the data in a peer-reviewed journal article. Ten years post publication of the data, the data will be securely destroyed.
11. Who has reviewed this research project?
This study has been reviewed and has ethical approval from The University of Stirling General University Ethics Panel (GUEP).
12. Who can I contact if I have concerns about this study or I wish to complain?
If you have any questions regarding this study, please contact Dr Line Caes (line.caes@stir.ac.uk).
If there are any complaints, you can contact Paul Dudchenko (p.a.dudchenko@stir.ac.uk ) who is the head of the division of psychology and not involved in this study in any way.
Thank you for your participation.