{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,13]],"date-time":"2025-12-13T23:04:50Z","timestamp":1765667090103},"reference-count":25,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2014,9,3]],"date-time":"2014-09-03T00:00:00Z","timestamp":1409702400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2015,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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\u2010hundred thirty\u2010nine parent surveys (XXY <jats:italic>n<\/jats:italic>\u2009=\u200968, XXX <jats:italic>n<\/jats:italic>\u2009=\u200921, XYY <jats:italic>n<\/jats:italic>\u2009=\u20099, other SCAs <jats:italic>n<\/jats:italic>\u2009=\u200941) and 67 individual surveys (XXY <jats:italic>n<\/jats:italic>\u2009=\u200958, XXX <jats:italic>n<\/jats:italic>\u2009=\u20099) 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\u2010test of proportions, all <jats:italic>p<\/jats:italic>'s\u2009&lt;\u20090.001). 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 (<jats:italic>M<\/jats:italic>\u2009=\u20092.0\u2009\u00b1\u20091.41) than prepared parents [<jats:italic>M<\/jats:italic>\u2009=\u20092.\u2009\u00b1\u20091.56; t(101)\u2009=\u22122.02, <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.05]. Common parental concerns included making the conversation age\u2010appropriate, discussing infertility, and possible impact on the child's self\u2010esteem. 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.<\/jats:p>","DOI":"10.1007\/s10897-014-9741-4","type":"journal-article","created":{"date-parts":[[2014,9,2]],"date-time":"2014-09-02T01:31:54Z","timestamp":1409621514000},"page":"88-103","update-policy":"http:\/\/dx.doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":28,"title":["\u201cHow Should I Tell my Child?\u201d Disclosing the Diagnosis of Sex Chromosome Aneuploidies"],"prefix":"10.1002","volume":"24","author":[{"given":"Anna","family":"Dennis","sequence":"first","affiliation":[{"name":"Graduate Program in Genetic Counseling University of Colorado Denver Aurora CO USA"},{"name":"Department of Molecular and Medical Genetics Oregon Health and Sciences University Portland OR USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan","family":"Howell","sequence":"additional","affiliation":[{"name":"eXtraordinarY Kids Clinic, Child Development Unit Children's Hospital Colorado 13123 East 16 Ave, B140 Aurora CO 80045 USA"},{"name":"Department of Pediatrics University of Colorado School of Medicine Aurora CO USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa","family":"Cordeiro","sequence":"additional","affiliation":[{"name":"eXtraordinarY Kids Clinic, Child Development Unit Children's Hospital Colorado 13123 East 16 Ave, B140 Aurora CO 80045 USA"},{"name":"Department of Pediatrics University of Colorado School of Medicine Aurora CO USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicole","family":"Tartaglia","sequence":"additional","affiliation":[{"name":"eXtraordinarY Kids Clinic, Child Development Unit Children's Hospital Colorado 13123 East 16 Ave, B140 Aurora CO 80045 USA"},{"name":"Department of Pediatrics University of Colorado School of Medicine Aurora CO USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,9,3]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7284.463"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2002-021491"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF00706035"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajhg.2009.09.007"},{"key":"e_1_2_10_6_1","doi-asserted-by":"crossref","unstructured":"Gallo A. Angst D. Knafl K.A. Hadley E.&Smith C.(2005).Parents sharing information with their children about genetic conditions.Journal of Pediatric Health Care 267\u2013275.","DOI":"10.1016\/j.pedhc.2005.05.008"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0015-0282(03)01121-X"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/pd.637"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_10_10_1","volume-title":"Living with Klinefelter Syndrome (47,XXY)Trisomy X (4 7,XXX) and 4 7,XYY: A guide for families and individuals affected by X and Y chromosome variations.","author":"Isaacs Cover V.","year":"2012"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(59)90415-5"},{"key":"e_1_2_10_12_1","unstructured":"KS&A. (2014) \u201cFAQ: When and how should I tell my son that he has 47 XXY\/my daughter that she has Trisomy X?\u201d 2012. 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