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UK research: Talking to children about inherited genetic conditions

October 8, 2014

Huntington's Disease Youth Organization

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Below is a research project at Kings College, London, which HDYO is supporting. If you think you and your family would like to take part please contact Emma on the email below.

Talking to children about a genetic condition – a new and exciting opportunity

A new and innovatory way of supporting parents to talk with their children about the genetic condition in their family has been developed. Researchers worked with parents, children and young people along with clinicians worked to develop the method and they now wish to test whether families do think it is useful.

The method is called a Multi-Family Discussion Group and is the first of its kind across the world and is specifically designed for families affected by a genetic condition, although they have been used very successfully in other situations.

Families who helped design the method were very excited about the techniques they learnt, which parents, children and young people thought were very beneficial but now it’s a case of finding out what other families think....

If you would like to assist the research team in finding out whether this Multi-Family Discussion Group (MFDG) method is likely to be useful and to help us get more funding to develop this method further for use in the NHS, we would like to invite families to take part in a small trial comparing the outcome of the MFDG with information provided in a leaflet.

We have a maximum of only 20 places for the only course, which takes place in September 2014

If you would like to find out more and to express interest in taking part please contact Emma Rowland: emma.rowland@kcl.ac.uk or 0207 848 3650 or Alison Metcalfe Alison.Metcalfe@kcl.ac.uk

Emma Rowland, BA, MA
Research Associate

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