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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 and please contact Andrew Steven (research assistant) if there is anything that is unclear or if you would like further information provided. You can contact me at a.steven@lnapier.ac.uk
What is the purpose of the study?
The aim of the study is to explore the impact SCAD has on family members, in particular partners/spouses. This study will investigate your experience of the event, and also the support you received, if any, and your opinion on what form of support you think would have been beneficial. We hope that this might improve the level of support given to partners/spouses of SCAD survivors.
Why have I been asked to take part?
We are interested in the views of SCAD survivors’ partners/spouses about their experience of the event and the period of time immediately after. You have been asked to take part because you responded to the advert saying that your partner or spouse has experienced a SCAD.
Do I have to take part?
No, it is up to you to decide whether to take part. You can stop taking part in the study at any time, without giving a reason. If you decide to take part, you are still free to withdraw at any time without giving a reason. If you decide to withdraw from this study before the data have been analysed, your data will be destroyed and will not be used in the analysis. It will not be possible to withdraw your data once it has been analysed. However, the presentation of findings will be anonymised and it will not be possible to identify you within these findings.
What will happen if I take part?
If you agree to participate, you will be invited to take part in an interview using Microsoft Teams, which we estimate to last around 60-90 minutes. During the interview you will be asked a number of questions about your experiences at the time of your partner or spouses SCAD event. You will also be asked to comment on what support you received and how this support could be improved in future.
The interview will be recorded and stored on a password protected and encrypted Edinburgh Napier University drive. The recording is for the researchers’ use only and will be typed into a written format with all identifying data being removed and deleted from the storage device. The audio and video data will be deleted once the data have been typed into a written format. The written transcription will have all identifying information removed and will not have your name or any identifying information about you in it.
The interview will be led by a member of the research team Edinburgh Napier University and a typed version of your interview will be emailed to you or sent by post, to ensure I have understood you completely and recorded your answers accurately. You can then comment or amend the analysis to ensure we have accurately captured your views. You can withdraw from the study by contacting me and I will destroy your consent form, interview data and any record of personal contact details that I have for you. If there are any questions you do not wish to answer, you can miss these questions out.
What are the possible benefits of taking part?
You will not receive direct benefit from participation in the study. However, the results should help our understanding of what impact a SCAD has on the survivors’ partners/spouses. This, in turn, is expected to be beneficial to further inform health care professionals of improved support for the close family members of this patient group.
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 a period of time to undertake a Microsoft Teams interview. This interview is not expected to take 60-90 minutes.
Will my taking part in the study be kept confidential?
All personal identification information collected during the course of the research will be kept confidential and there are strict laws that safeguard your privacy at every stage. Your name and any other identifiable information will be removed from the data so that you cannot be recognised. Identifiable information will be removed when transcribed. Quotes may be used in the presentation of the findings but names will be replaced with pseudonyms so these will not be identifiable to an individual. We will take care to ensure that any data is non-identifiable if used in the presentation of the findings.
The information you provide will be stored securely on a password protected Edinburgh Napier University drive. Following completion of the study, the anonymised data will be stored until the findings have been disseminated either in conference presentation or journal publication. Once disseminated the data will be destroyed.
What happens when the study is finished?
At the end of the research, the data you have provided will be stored once all personally identifiable data has been removed. The anonymised data may be made available to other researchers for further analysis once the results of the research have been 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 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 replaced with pseudonyms so these will not be identifiable to an individual.
Who is organising the research and why?
The principal investigator organising the study is Lis Neubeck. This research is being organised following a series of workshops on another research project. During these workshops, SCAD survivors frequently reported that the event had a significant impact on their partners/spouses.
Who has reviewed the study?
The study proposal has been reviewed by the School of Health and Social Care Ethics Committee at Edinburgh Napier University SHSC.
If you have any further questions about the study, please contact:
Andrew Steven a.steven@napier.ac.uk
If you would like to discuss this study with an independent person, please contact:
Sheona McHale, Research Assistant, Edinburgh Napier University via email: CardiovascularHealth@napier.ac.uk
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