Research Study for Families who have Received a Diagnosis of 22q11.2 in Ireland

Emma O’Donoghue, a researcher from Cardiff University, is looking for parents or family members of children or individuals diagnosed with 22q11.2 deletion syndrome to take part in a research study called ‘The Experiences of Families Receiving a Diagnosis of 22q11.2 Deletion Syndrome in Ireland’.

Why participate? The research project aims to gain an insight into the experiences of families who have received a diagnosis of 22q11.2 deletion syndrome in Ireland. Families in Ireland often have to wait over a year, sometimes two years, for Genetic Counselling. By this time, parents have likely processed the diagnosis of 22q11 and become knowledgeable about 22q11 themselves. It is felt that Genetic Counselling support would be more beneficial for the parent(s) and family at or closer to the time of diagnosis.

What is involved? The project will involve taking part in an interview with the researcher by telephone call or on ‘Zoom’ or ‘Skype’. It will be a once-off interview which will last around 40-60 minutes. The interviews will happen between September-December 2020 at a date and time that is convenient to you. There will be some questions broadly about your experiences of how you received a diagnosis of 22q11 in your family and what needs you and your family have, and how this experience could have been better.

If you would like to participate or are interested in learning more about this research project, please contact Emma O’Donoghue at

 

Phone: +353 86 2100 811
Email: odonoghuee@cardiff.ac.uk

 

If you are interested in participating, you will be provided with a Participant Information Sheet (PIS) and Consent form. Please return the consent form to Emma O’Donoghue within 4 weeks.

 

Version 2 13.08.2020 

A printable pdf version of the poster.

Call us: Anne @ 087 7412856

Registration No. CHY17647

Ireland's National charity for children and adults diagnosed with 22q11.2 Deletion Syndrome. DiGeorge Syndrome and VCFS.

© 2017 by 22q11 Ireland 

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