Conversations About vEDS
Conversations About vEDS: Adults' reflections on first learning their diagnosis and how this was communicated in the family.
Study Question:
How adults first learned about their vEDS diagnosis and how family communication shaped their understanding and coping over time?
To explore:
- How adults first learnt about their vEDS diagnosis
- How adults made sense of their vEDS diagnosis over time
- How family communication shaped vEDS understanding
- What factors helped or hindered coping and adjustment to a vEDS diagnosis
- What information, communication or support would have been helpful
Method:
Completing an individual one‑to‑one online interview using Microsoft Teams, lasting up to one hour.
Eligibility:
- Able to communicate well in written and spoken English
- You are aged 18 or over
- You have received a genetically confirmed diagnosis of vEDS by a UK healthcare provider
- You are able to participate in an online interview conducted in English
- You are able to provide written informed consent
- You are not currently pregnant
Lead Researcher:
May Roberts a 3rd Year MSc Genetic and Genomic Counselling Cardiff University student
How to Take Part:
To register your interest please enter your first name, surname, email and press submit. This will send an email to May Roberts at
robertsmc2@cardiff.ac.uk whom will then send you the participant information sheet and consent form. You can ask any questions before deciding.
REGISTER YOUR INTEREST
