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

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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.

Published in: Health & Medicine
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Disclosure of a diagnosis to a child with Trisomy X or 47,XYY

  1. 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)
  2. 2. 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.
  3. 3. 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

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