Disclosure of a diagnosis to a child with Trisomy X or 47,XYY

Disclosure of a diagnosis to a child with Trisomy X or 47,XYY:

Development of materials to help parents decide whether, when and how

Dorothy Bishop, Nikki Gratton, Gaia Scerif & Karen Melham (University of Oxford);

Sarah Wynn & Prisca Middlemiss (Unique: Rare Chromosome Disorder Support Group);

Diana Wellesley (Wessex Clinical Genetics Service); Debbie Shears & Jessica Myring (Oxford Regional Health Authority)

Our children’s booklet is intended for primary school aged children (5 to 11 yr), but its suitability will also depend on the child’s language level. We have been testing how much is understood in relation to children’s vocabulary. Most typically-developing children grasp the main ideas by around 7-8 years old.

Materials from this project will be made available as electronic or printed booklets after final evaluation: we anticipate this will be in Summer 2014

If you would like further information, or if you are interested in taking part in our research on children with a sex chromosome trisomy, please see:http://www.psy.ox.ac.uk/research/oxford-study-of-children-s-communication-impairments/research-projects/children-with-an-extra-sex-chromosome

or email us on oscci@psy.ox.ac.uk