A tale worth telling : the impact of the diagnosis experience on disclosure of genetic disorders

By: Goodwin, J.
Contributor(s): Campbell, L. E [author] | Gothelf, D [author] | Hooper, S. R [author] | Morad, O [author] | Schoch, K [author] | Shashi, V [author] | Zalevsky, M [author].
Series: Journal of Intellectual Disability Research 59 (5) 2015: 474-486. 2015Content type: text Media type: unmediated Carrier type: volume Subject(s): PARENTAL ATTITUDES | VELOCARDIOFACIAL SYNDROME | DISCLOSURE | CHILDREN | DEVELOPMENTAL DISORDERS | DIAGNOSISSummary: Examines 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 (22q11DS) were compared with a group of parents with children affected with other genetic diagnoses, with a similar age of diagnosis (e.g. fragile X syndrome) and a group where diagnosis generally occurs early (i.e. Down syndrome).
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Examines 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 (22q11DS) were compared with a group of parents with children affected with other genetic diagnoses, with a similar age of diagnosis (e.g. fragile X syndrome) and a group where diagnosis generally occurs early (i.e. Down syndrome).

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