With funding from the Nuffield Foundation, we have developed materials to help parents decide whether, when and how to tell their children about a sex chromosome trisomy (XXX or XYY). These slides describe the background and the development of a booklet for parents and a picture-book for children.

1. 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)

12. 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.

13. 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