Project Evaluation: Development of materials to help families explain to their child about a sex chromosome abnormality

In a project funded by the Nuffield Foundation we developed materials to help parents decide whether, when and how to tell their child about an extra sex chromosome, i.e., boys with XYY or girls with XXX karyotype. These are available for download from Figshare.
This report describes our evaluation of the booklets. Unique identified individuals on their database who either had a sex chromosome trisomy themselves, or had an affected child, and invited them to comment on the booklets to establish what worked well and what could be improved. We used questionnaires including quantitative ratings and targeted questions, plus a smaller set of interviews to obtain more open-ended qualitative information.