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Gepubliceerd in: Journal of Autism and Developmental Disorders 1/2019

04-10-2018 | Original Paper

Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders

Auteurs: Isabelle Tremblay, Steffany Grondin, Anne-Marie Laberge, Dominique Cousineau, Lionel Carmant, Anita Rowan, Annie Janvier

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 1/2019

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Abstract

Parents’ understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing. Parents expected genetic testing to have positive impacts for the child (93%) and the family (98%), mainly to find the etiology and/or an intervention. Many parents (40%) reported not knowing their child’s clinical diagnosis. They expected genetic testing would establish the diagnosis. Parents anticipated potential negative impacts of testing for children (78%) and families (87%), mainly finding another illness or not finding potential interventions. Abnormal results explaining the disorder were found in 9% of children. In summary, genetic results for developmental disorders are unlikely to meet parental expectations.
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Metagegevens
Titel
Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders
Auteurs
Isabelle Tremblay
Steffany Grondin
Anne-Marie Laberge
Dominique Cousineau
Lionel Carmant
Anita Rowan
Annie Janvier
Publicatiedatum
04-10-2018
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 1/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-018-3768-6

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