NOTE FOR ALL NEW APPLICANTS:
Information about Coventry University’s study; ‘Exploring the child-bearing experiences of women with hypermobile Ehlers-Danlos syndrome’
Hypermobile Ehlers-Danlos Syndrome (hEDS)/ Hypermobility Spectrum Disorder (HSD) can negatively impact upon the process of having children, yet those diagnosed feel that healthcare professionals are lacking in awareness. If Heds/HSD remains poorly understood, maternity care may be significantly compromised. As such, researchers at Coventry University are looking to are interview a range of women with experience of pregnancy, birth and Heds/HSD. They anticipate that doing this will help increase understandings within the healthcare community and therefore improve maternity care. This information sheet tells you everything you need to know about participation.
- Why have I been chosen?
It is likely that you are reading this information because you are a woman over the age of 18 with experience of pregnancy, birth and hEDS/HSD (this includes the previous diagnoses of EDS-Hypermobility Type, EDS-Type III and Joint Hypermobility Syndrome).
- Do I have to take part?
You have no obligation to take part in this study. You may also stop the interview at any point and are under no obligation to continue. Should you decide to take part, but later decide to withdraw from this study, you may do so up to one month after your interview has taken place without need of any explanation by informing Dr. Sally Pezaro via email (firstname.lastname@example.org). After this time, your data will be anonymised, and therefore it will not be possible to extract individual data thereafter.
- What do I need to do?
We will be organising a series of online interviews during the Spring of 2018. The focus of these interviews will be on the experience of women over the age of 18 who have a confirmed medical diagnosis of a hypermobile subtype of EDS and who have given birth. The interviews will last no more than an hour and will be arranged at your convenience. You will need to download Skype software and agree to their terms of usage (https://www.skype.com/en/legal/) prior to interview in order to use the pre-registered online participant account associated with this research. This means that you do not need to use your own personal account. However, if you are unable to participate in an online interview but still wish to take part, then please contact Dr. Sally Pezaro (email@example.com) to arrange a telephone interview at a mutually convenient time for you.
During the interview, the researcher will ask you to relay your experiences in relation to hEDS, pregnancy and birth. The researcher will keep a copy of the written conversation from online messaging or record the telephone call using a Dictaphone to make sure they have an accurate record of your viewpoint. All conversation history on the Skype software will then be deleted, and recordings will instead be stored securely by the research team.
- What happens after my interview?
Following the completion of at least 20 online interviews, the research team will organise and analyse all of the contributions to identify any themes that may emerge. All contributions will only be accessed by the research team.
- What will happen to my data?
Any data you give will be protected and secured confidentially by the research team via a secured share point drive folder. The data collected throughout this study will be kept securely for at least five years from the end of the project in line with Coventry University’s policy on Principles and Standards of Conduct on the Governance of Applied Research.
Your email address will be retained so that the research team can arrange interviews with you and send the final report of the study to you. Your email address will also be used to any of your data which requires withdrawal before the 1-month period following your interview. Your contact details will be deleted after the final report of this study has been sent to you.
- Are there any risks involved?
We do not anticipate any risks for participants, however, the following support organisations are available:
- What are the benefits of taking part?
The benefit of taking part in this study is that the results will be published and shared to improve current understandings within the maternity services. By taking part you can contribute to shaping current understandings in relation to hEDS/HSD, pregnancy and birth. We will send all participants in the interview study a copy of the final report.
- What if things go wrong? Who to complain to.
If you should need to complain then you can contact Professor Olivier Sparagano, Associate Pro-Vice Chancellor of Research: firstname.lastname@example.org
- What will happen with the results of the study?
The results will be presented at academic and professional conferences, published in peer reviewed academic journals and made available to the public (e.g., via social media and public engagement events).
- Who has reviewed this study?
This study has been reviewed and approved by the Coventry University Faculty of Health and Life Sciences Ethics Review process.
If you should need any further information or wish to take part, please contact:
Dr. Sally Pezaro @SallyPezaro
The School of Nursing, Midwifery and Health
Coventry, United Kingdom