Project title: Do individuals with different types of epilepsy report associated anomalous experiences?
We would like to invite you to take part in this research project. Before you decide, you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and ask questions about anything you do not understand. Talk to others about the study if you wish.
What is the purpose of the study?
The purpose of this study is to explore the exceptional, anomalous and spiritual experiences of individuals with epilepsy. This study is important as it will consider the depth and breadth of experience of individuals with epilepsy and their consequent view of spirituality. This research will explore these experiences through the use of an online questionnaire to gather your experiences.
Why have I been invited to take part in the study?
You have been invited to take part in this study because you are an adult aged 18+ with epilepsy, and you have unusual, spiritual, or anomalous experiences that are, for you, a result of your condition. Individuals excluded are those who do not have epilepsy.
Do I have to take part?
No, you do not have to participate. Your participation is voluntary. There will be no adverse consequences in terms of your treatment or support if you decide not to participate or withdraw at a later stage. You can request for your data to be withdrawn within one week of completing the survey without giving a reason and without prejudice. If you withdraw, all your data will be destroyed. Please contact the Principal Investigator (louise.spiers@northampton.ac.uk) with the name you provided on the online questionnaire.
What will I do in the study?
If you agree to take part, you will be provided with a link to complete the survey. At the start, you will be asked to sign a consent form. Your participation will take about 30-45 minutes. During this time, you will be asked to answer questions regarding past and current experiences. It is your right to skip any question that you do not want to answer. You can take the survey in your own time. There will also be the option to take short breaks, should you require them.
What will happen to data I provide?
All data will be stored anonymously and confidentially on secure university cloud servers according to the university research procedures (University of Northampton Research Data Management Policy, 2022).
Personal data will be handled in accordance with the General Data Protection Regulations (GDPR) 2018 and the UK Data Protection Act 2018 (DPA). Data protection legislation requires the University to have a valid legal reason to process and use personal data about you. This is often called a ‘legal basis’. In the context of research, the lawful basis upon which your personal information will be processed is usually where “Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller” (Article 6 of GDPR). The standard University Privacy Policy Statement can be found at https://www.northampton.ac.uk/about-us/privacy-policy/
What will happen to the results of this study?
The results of this study will be included in a scientific report, presentations and published in academic journal articles. Collated responses to the survey will be included in the article, but without your name or any identifying details. Details will be shared with epilepsy professionals, to help them to better understand your experiences. It is possible that other academics may wish to use the anonymised data; we will ensure that their reasons for accessing the data are appropriate before transferring anything, and everything will be done using secure and confidential data transfer methods.
What are the risks and benefits of taking part?
The benefits of taking part are the opportunity to share your personal experiences, perceptions and perspectives that you may never have had the chance to share before. The benefit of doing this may be to acknowledge these experiences and contribute to the understanding of them for the professional epilepsy community and for others with epilepsy who might have similar experiences. You will be helping to advance the understanding of epilepsy and the treatment of individuals with the condition. The risks are the possibility of distress /discomfort and not having someone to talk to about these experiences.
If you find that your participation is distressing, please contact these free, confidential helplines for support.
Samaritans - available 24/7, Call: 116 123, Email: jo@smaritans.org, Webchat: https://webchat.samaritans.org
Epilepsy Action – available Mon-Fri 8.30am-5pm, Sat 10am-4pm, Call: 0808 800 5050, Email: helpline@epilepsy.org.uk
Epilepsy Society - available Mon-Fri 9am-4pm, Wed 9am – 7.30pm, Call: 01494 601 400, Email: helpline@epilepsysociety.org.uk
Epilepsy Ireland - available Mon-Fri 09:00am-5pm, Call: 014557500, Email: info@elipepsy.ie
Will my taking part in the study be kept confidential?
Yes. Your details will be held in complete confidence and we will follow ethical and legal practice in relation to all study procedures. Personal data (your name, contact details, recorded voice) will be handled in accordance with the General Data Protection Regulations, (GDPR), 2018 so that unauthorised individuals will not have access to them. Your data will be anonymised and we will not use your name or any other details that could identify you or other people. Research data such as interview transcripts held electronically would be kept in encrypted or password protected folders and devices to minimise any risk, and to prevent unauthorised access or accidental loss. The University policy requires all research data to be securely stored on University cloud servers. Personal data will always be stored in an encrypted folder separately from your survey responses. The Principal Investigator will be in charge of keeping, processing, and deleting your data in accordance with University Research Ethics, Code and Procedures (https://www.northampton.ac.uk/wp-content/uploads/2021/04/uon-research-ethics-code-and-procedures-may-2022).
What if there is a question or a problem?
If you have any questions, concerns or complaints about your participation in this study, please contact the Principal Investigator, Louise Spiers (louise.spiers@northampton.ac.uk). Should you have further concerns about this project, you may also contact the Faculty of Health, Education & Society Research Lead, John Horton (john.horton@northampton.ac.uk) University of Northampton, Northampton, Northamptonshire, NN1 5PA.
This study has received approval from the Faculty of Health, Education & Society Ethics Committee at the University of Northampton.
Thank you for taking the time to read this Information Sheet.
Your participation would be greatly valued.
If you would like further information prior to participating, please contact Dr Louise Spiers (louise.spiers@northampton.ac.uk).