Take your chance to take part in research exploring how families experienced their child’s diagnosis – what helped, what didn’t, and what you wish had been different. Sign up to tell your story.
We’re sharing this invitation on behalf of Harriet Hewes, an MSc Genetic and Genomic Counselling student at Cardiff University. Their qualitative study is exploring ‘the psychosocial impacts on family members of the diagnosis of aniridia in a child: what helped, what didn’t, and what would have made a difference’.
This study aims to understand:
- How family members experienced the diagnosis journey
- What information or support was helpful – and what would have been helpful
- Whether experiences differ between familial and sporadic diagnoses
Who can take part?
Family members who were involved around the time of a child’s diagnosis of aniridia, including both familial and sporadic cases.
Participants must be:
- parents/caregivers/adoptive parents, siblings, or grandparents involved during the diagnostic period
- connected to Aniridia Network as members or relatives of members (Join if not a member)
- aged 18 or over
- living in the UK
- able to communicate in English
- able to take part in an online interview
- able to provide informed consent for research participation
What does participation involve?
- A one-to-one interview lasting 45–60 minutes
- conducted online (ideally via Microsoft Teams)
- scheduled at a time convenient for you.
The interview will explore your reflections on the diagnosis journey, its psychosocial
impact, and any information or support you feel would have been helpful.
Voluntary participation
Taking part is entirely voluntary. You may withdraw at any time before anonymisation
of your data. You will receive a Participant Information Sheet and Consent Form, which explain the study in full, including confidentiality, data handling, and your rights.
How to take part
If you are interested or would like to ask any questions, contact:
Harriet Hewes
Email: heweshh@cardiff.ac.uk
MSc Genetic and Genomic Counselling, Cardiff University
Please pass this invitation on to other relatives – partners, siblings, parents, adult children – who were involved at the time of diagnosis and may wish to take part.
Why your participation matters
Your experiences could help improve support for families navigating an aniridia diagnosis and guide future work by Aniridia Network.
Thank you for considering taking part in this important research.
