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Direct linkNag, Heidi Elisabeth; Naerland, Terje – Journal of Intellectual Disabilities, 2021
Smith-Magenis syndrome (SMS) is a genetic syndrome most often caused by a deletion on chromosome 17 or more rarely by a mutation in the retinoic acid-induced 1 gene. The aim of this study was to investigate the Developmental Behavior Checklist (DBC) profile of persons with SMS and the associations between behavioural and emotional problems, age,…
Descriptors: Genetic Disorders, Behavior Problems, Emotional Problems, Age Differences
Nag, Heidi Elisabeth; Hoxmark, Lise Beate; Naerland, Terje – Journal of Intellectual Disabilities, 2019
The experience of having a rare disorder was summarised in a large study as 'falling outside the vast field of knowledge of the professionals'. Parents (31 mothers and 17 fathers) of 32 persons with Smith-Magenis syndrome (SMS) participated in this study. A phenomenological approach was used to analyse the data into topics and themes. Four themes…
Descriptors: Genetic Disorders, Intellectual Disability, Behavior Problems, Parents
