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Direct linkNag, 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
