caa a22 4500 605544182 CHVBK 20210128100930.0 cr unu---uuuuu 210128e20150201xx s 000 0 eng 10.1007/s10897-014-9741-4 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9741-4 "How Should I Tell my Child?” Disclosing the Diagnosis of Sex Chromosome Aneuploidies [Elektronische Daten] [Anna Dennis, Susan Howell, Lisa Cordeiro, Nicole Tartaglia] To date, the disclosure of a sex chromosome aneuploidy (SCA) diagnosis to an affected individual has not been explored. This study aimed to assess the timing and content revealed to an affected child by his or her parent(s), resources accessed in preparation, parental feelings of preparedness, common parental concerns, and recommendations for disclosure approaches. Two online surveys were created: 1) for parents of a child with a diagnosis and 2) for individuals with a diagnosis. One-hundred thirty-nine parent surveys (XXY n = 68, XXX n = 21, XYY n = 9, other SCAs n = 41) and 67 individual surveys (XXY n = 58, XXX n = 9) were analyzed. Parents most frequently discussed the topics of learning disabilities (47%) and genetics (45%) with their child during the initial disclosure. A significantly greater proportion of parent respondents reported feeling prepared vs. unprepared for disclosure, regardless of their child's diagnosis (z-test of proportions, all p's < 0.001). Both prepared and unprepared parents most frequently accessed resources such as websites, support groups, and discussion with the child's physician prior to disclosure, with unprepared parents accessing fewer resources (M = 2.0 ± 1.41) than prepared parents [M = 2. ± 1.56; t(101) =−2.02, p < 0.05]. Common parental concerns included making the conversation age-appropriate, discussing infertility, and possible impact on the child's self-esteem. Both parent and individual respondents endorsed being honest with the child, disclosing the diagnosis early and before puberty, and discussing the diagnosis gradually over time. These results provide recommendations for parents, and suggest benefits from additional resources and supports to alleviate concerns when approaching diagnosis disclosure. National Society of Genetic Counselors, Inc., 2014 Diagnosis Disclosure nationallicence Sex Chromosome Aneuploidy nationallicence Klinefelter Syndrome nationallicence Trisomy X nationallicence Genetic Counseling nationallicence XXYY nationallicence XYY nationallicence XXY nationallicence Dennis Anna Graduate Program in Genetic Counseling, University of Colorado Denver, Aurora, CO, USA aut Howell Susan eXtraordinarY Kids Clinic, Child Development Unit, Children's Hospital Colorado, 13123 East 16 Ave, B140, 80045, Aurora, CO, USA aut Cordeiro Lisa eXtraordinarY Kids Clinic, Child Development Unit, Children's Hospital Colorado, 13123 East 16 Ave, B140, 80045, Aurora, CO, USA aut Tartaglia Nicole eXtraordinarY Kids Clinic, Child Development Unit, Children's Hospital Colorado, 13123 East 16 Ave, B140, 80045, Aurora, CO, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 88-103 1059-7700 24:1<88 2015 24 10897 https://doi.org/10.1007/s10897-014-9741-4 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9741-4 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Dennis Anna Graduate Program in Genetic Counseling, University of Colorado Denver, Aurora, CO, USA aut NATIONALLICENCE 700 1- Howell Susan eXtraordinarY Kids Clinic, Child Development Unit, Children's Hospital Colorado, 13123 East 16 Ave, B140, 80045, Aurora, CO, USA aut NATIONALLICENCE 700 1- Cordeiro Lisa eXtraordinarY Kids Clinic, Child Development Unit, Children's Hospital Colorado, 13123 East 16 Ave, B140, 80045, Aurora, CO, USA aut NATIONALLICENCE 700 1- Tartaglia Nicole eXtraordinarY Kids Clinic, Child Development Unit, Children's Hospital Colorado, 13123 East 16 Ave, B140, 80045, Aurora, CO, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 88-103 1059-7700 24:1<88 2015 24 10897