Participant Information Sheet
Understanding the Emotional and Psychological Experiences
of SCAD Survivors with Post-SCAD Chest Pain
You are invited to take part in a research study. Before you decide whether to take part it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully. Talk to others about the study if you wish. Contact me if there is anything that is not clear or if you would like more information. Take time to decide whether you wish to take part.
What is the purpose of the study?
The purpose of the study is to explore the emotional and psychological experiences of people who have been diagnosed with Spontaneous Coronary Artery Dissection (SCAD) and continue to experience chest pain after the initial event. The study aims to understand how ongoing symptoms affect daily life, emotional wellbeing, and experiences with healthcare services. This research will involve up to 20 participants.
Why have I been asked to take part?
You have been asked to take part because you are a SCAD survivor who continues to experience chest pain following your diagnosis, and you are aged 18 years or older, live in the UK, and able to speak English fluently.
Do I have to take part?
No, it is up to you to decide whether to take part. If you do decide to take part, you will be asked to complete an online consent form by ticking a box to confirm your agreement, and you will be emailed a copy of this information sheet to keep. If you agree to take part, you are still free to withdraw at any time and without giving a reason. Deciding not to take part or withdrawing from the study will not affect the healthcare that you receive, or your legal rights.
What will happen if I take part?
If you agree to participate, you will take part in a one-to-one, online interview using Microsoft Teams. After signing the consent form, the researcher will contact you to arrange a convenient time for the interview. You will be asked questions about your experiences of living with post-SCAD chest pain, how it affects your emotional wellbeing, and your interactions with healthcare professionals. The interview will be audio-visually recorded using Microsoft Teams. The recording will be transcribed using Microsoft Teams transcription. Once it has been checked for accuracy, it will be anonymised and securely stored on Edinburgh Napier University storage systems. The audio-visual recording will then be deleted. The interview is expected to last up to 50 minutes.
What are the possible benefits of taking part?
You will not get a direct benefit from taking part in the study. The findings might help to improve understanding and support for other SCAD survivors in the future.
What are the possible disadvantages and risks of taking part?
We do not think that there are any disadvantages. However, if you agree to participate, you will be required to give up some time to take part in a Microsoft Teams interview lasting a maximum of 50 minutes.
Will my taking part in the study be kept confidential?
All the information we collect during the research will be kept confidential and there are strict laws which safeguard your privacy at every stage.
How will we use information about you?
People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead. We will read all interview records to look for themes. Once we have finished the study, we will keep the written interview records so we can check the results. We will write our results in a way that no-one can work out that you took part in the study.
What are your choices about how your information is used?
If you decide you no longer want to take part, you can request that your information is withdrawn from the study up until the analysis is complete (June 30, 2025). You can request this by contacting Guitar Williams Egbon via email: 40675883@live.napier.ac.uk.
What are your choices about how your information is used?
You can find out more about how we use your information from the privacy notice. This is included in this information pack.
What happens when the study is finished?
When the study is finished, anonymised data will be stored by Edinburgh Napier University if the results are submitted to a healthcare journal. If not, data will be destroyed once the student has received their dissertation mark. Anonymised data may be made available to other researchers for further analysis if the results of the research are published. This would only be after an official request, consideration of suitability for sharing, and subject to a data sharing agreement between Edinburgh Napier University and the researcher requesting the data. The data will be stored for at least 10 years.
What will happen to the results of the study?
The data will be analysed and written up within an MSc dissertation project and the findings may be published in healthcare journals and presented at conferences. However, it will not be possible to identify any individual participant from these reports or publications. Quotes may be used in the presentation findings but names will be coded with numbers so they will not be identifiable to an individual.
Who is organising the research and why?
The principal investigator organising the study is Guitar, an MSc Nursing (Pre-Registration) Mental Health student at Edinburgh Napier University with a special interest in cardiovascular psychology and lived experience research. The project is being conducted as part of my MSc Dissertation.
Who has reviewed the study?
A favourable ethical opinion has been obtained by the School of Health and Social Care Research and Integrity Committee at Edinburgh Napier University (REF: MSC022-25).
Researcher contact details
If you have further questions about the study, please contact:Guitar Williams Egbon via email: 40168182@live.napier.ac.uk
Supervisors: Professor Lis Neubeck (email: l.neubeck@napier.ac.uk) and Dr Coral Hanson (email: c.hanson@napier.ac.uk)
Independent contact details
If you would like to discuss this study with an independent person please contact: Dr Natasha Spassiani, Associate Professor at n.spassiani@napier.ac.uk