Journal
JOURNAL OF INTELLECTUAL DISABILITIES
Volume 23, Issue 3, Pages 359-372Publisher
SAGE PUBLICATIONS LTD
DOI: 10.1177/1744629519847375
Keywords
Smith-Magenis syndrome; challenging behaviours; parents' experiences; rare disorders; support
Categories
Funding
- Norwegian National Advisory Unit on Rare Diseases
Ask authors/readers for more resources
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.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available