{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T21:10:10Z","timestamp":1780607410269,"version":"3.54.1"},"reference-count":38,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2014,7,25]],"date-time":"2014-07-25T00:00:00Z","timestamp":1406246400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"NIMH International Consortium on Brain and Behavior","award":["5U01MH101722-02"],"award-info":[{"award-number":["5U01MH101722-02"]}]},{"name":"Binational Science Foundation","award":["2011378"],"award-info":[{"award-number":["2011378"]}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"published-print":{"date-parts":[[2015,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Research suggests children with genetic disorders exhibit greater coping skills when they are aware of their condition and its heritability. While the experiences parents have at diagnosis may influence their decision to disclose the diagnosis to their children, there is little research into this communication. The aim of the current study was to examine the relationship between the diagnosis experience and the disclosure experience for parents of children with developmental disorders of a known genetic aetiology: parents of children with 22q11.2 deletion syndrome (22q11<jats:styled-content style=\"fixed-case\">DS<\/jats:styled-content>) were compared with a group of parents with children affected with other genetic diagnoses, with a similar age of diagnosis (e.g. fragile <jats:styled-content style=\"fixed-case\">X<\/jats:styled-content> syndrome) and a group where diagnosis generally occurs early (i.e. <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>own syndrome).<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>The sample comprised 559 parents and caregivers of children with genetic developmental disorders, and an online survey was utilised. Items from the questionnaire were combined to create variables for diagnosis experience, parental disclosure experience, child's disclosure experience, and parental coping and self\u2010efficacy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Across all groups parents reported that the diagnosis experience was negative and often accompanied by a lack of support and appropriate information. Sixty\u2010eight per cent of those in the 22q11<jats:styled-content style=\"fixed-case\">DS<\/jats:styled-content> and 58.3% in the <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>imilar <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>onditions groups had disclosed the diagnosis to their child, whereas only 32.7% of the <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>own syndrome group had. Eighty\u2010six per cent of the <jats:styled-content style=\"fixed-case\">D<\/jats:styled-content>own syndrome group felt they had sufficient information to talk to their child compared with 44.1% of the <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>imilar <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>onditions group and 32.6% of the 22q11<jats:styled-content style=\"fixed-case\">DS<\/jats:styled-content> group. Parents reported disclosing the diagnosis to their child because they did not want to create secrets; and that they considered the child's age when disclosing. In the 22q11<jats:styled-content style=\"fixed-case\">DS<\/jats:styled-content> and <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>imilar <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>onditions groups, a poor diagnosis experience was significantly associated with negative parental disclosure experiences. In the <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>imilar <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>onditions group, a poor diagnosis experience was also significantly associated with a more negative child disclosure experience.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>As expected this study highlights how difficult most parents find the diagnosis experience. Importantly, the data indicate that the personal experiences the parents have can have a long\u2010term impact on how well they cope with telling their child about the diagnosis. It is important for clinicians to consider the long\u2010term ramifications of the diagnosis experience and give the parents opportunities; through, for instance, psychoeducation to prepare for telling their child about the diagnosis. Further research is warranted to explore what type of information would be useful for parents to receive.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jir.12151","type":"journal-article","created":{"date-parts":[[2014,7,25]],"date-time":"2014-07-25T10:44:29Z","timestamp":1406285069000},"page":"474-486","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":34,"title":["A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders"],"prefix":"10.1111","volume":"59","author":[{"given":"J.","family":"Goodwin","sequence":"first","affiliation":[{"name":"University of Newcastle School of Psychology  Ourimbah NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Schoch","sequence":"additional","affiliation":[{"name":"Duke University Medical Center Division of Medical Genetics  Durham NC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"V.","family":"Shashi","sequence":"additional","affiliation":[{"name":"Duke University Medical Center Division of Medical Genetics  Durham NC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S. 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