We are sharing an opportunity for families to take part in some research run by Clare Jacobs at Cardiff University. Clare is studying to become a Genetic Counsellor and is also mum to a young person with Down’s Syndrome. She wants to use her personal experiences and find out more about how a genetic diagnosis is communicated within families who have a child with a learning disability. Her hope is that she can disseminate the results of this study so that genetic counsellors can understand the views of parents and develop their practice in this area.
My name is Clare Jacobs and I am in the final year of studying to become a genetic counsellor, I am also a mum to a young man with Down’s Syndrome. Partly because of my family’s experience I am interested in how a genetic diagnosis is communicated within families that have a child with a learning disability. My dissertation project is researching parents’ experiences of discussing a genetic diagnosis with a young person with a learning disability as there is little current research in this area. My hope is that I can disseminate the results of this study so that genetic counsellors can understand the views of parents and develop their practice in this area.
I am looking for participants that are parents or carers of a young person with a genetic diagnosis and a learning disability aged 10-24 years. Participants would take part in interviews and should be prepared to discuss their young person’s genetic diagnosis and how they have used the knowledge of this diagnosis to talk to the young person. I would also like to talk to families that haven’t discussed the genetic diagnosis with the young person and the reasons why this may be.
Interviews would be online and I can arrange the interviews at a time convenient to you. The interviews would be recorded so that I can analyse the data and draw out any relevant themes. The data will be confidential, and you could not be identified from any publication or research output.
I have attached an information sheet about the study, please get in contact with me if you are interested in taking part and we can discuss it further. My email is JacobsC2@cardiff.ac.uk