Disclosure of a diagnosis to a child with Trisomy X or 47,XYY
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The document discusses the creation of a resource for parents on how to disclose a diagnosis of trisomy X or 47, XYY to primary school-aged children (5 to 11 years old). It highlights the project's focus on understanding children's vocabulary and comprehension abilities, noting that most typically-developing children grasp the main ideas by age 7-8. Final materials will be evaluated for release as electronic or printed booklets by summer 2014, with additional research participation information provided.
Disclosure of a diagnosis to a child with Trisomy X or 47,XYY
- 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