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Parental experiences with behavioural problems in Smith–Magenis syndrome: The need for syndrome-specific competence

Journal of intellectual disabilities, 2019-09, Vol.23 (3), p.359-372 [Peer Reviewed Journal]

The Author(s) 2019 ;info:eu-repo/semantics/openAccess ;ISSN: 1744-6295 ;EISSN: 1744-6309 ;DOI: 10.1177/1744629519847375 ;PMID: 31046579

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Title:
Parental experiences with behavioural problems in Smith–Magenis syndrome: The need for syndrome-specific competence
Author: Nag, Heidi Elisabeth ; Hoxmark, Lise Beate ; Nærland, Terje
James, Neil
Subjects: Adult ; Age Differences ; Behavior Problems ; Child ; Child Behavior ; Competence ; Experience ; Female ; Foreign Countries ; Gender Differences ; Genetic Disorders ; Humans ; Intellectual Disability ; Male ; Parents ; Problem Behavior ; Professional Personnel ; Qualitative Research ; Rare Diseases ; Smith-Magenis Syndrome - nursing ; Social Support
Is Part Of: Journal of intellectual disabilities, 2019-09, Vol.23 (3), p.359-372
Description: 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 emerged: behavioural challenges displayed, parents’ strategies for meeting the challenging behaviours, parents’ experiences of their own competence and parents’ experiences of professionals’ competence and understanding regarding children with SMS and their behaviour challenges. We found that parents of children with SMS experience that they are exposed to severe challenging behaviours from their child. The parents believe that they experience more misunderstandings with professionals and that the challenging behaviours increase because there are some specific characteristics of SMS that professionals are not aware of or do not consider in their support services.
Publisher: London, England: SAGE Publications
Language: English;Norwegian
Identifier: ISSN: 1744-6295
EISSN: 1744-6309
DOI: 10.1177/1744629519847375
PMID: 31046579
Source: NORA Norwegian Open Research Archives

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Parental experiences with behavioural problems in Smith–Magenis syndrome: The need for syndrome-specific competence

The Author(s) 2019 ;info:eu-repo/semantics/openAccess ;ISSN: 1744-6295 ;EISSN: 1744-6309 ;DOI: 10.1177/1744629519847375 ;PMID: 31046579

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