Parental experiences with behavioural problems in Smith-Magenis syndrome: The need for syndrome-specific competence
Parental experiences with behavioural problems in Smith-Magenis syndrome: The need for syndrome-specific competence
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DOI：
10.1177/1744629519847375
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发表时间：
2019-09-01
影响因子：
1.5
通讯作者：
Naerland, Terje
中科院分区：
文献类型：
--
作者：
Nag, Heidi Elisabeth;Hoxmark, Lise Beate;Naerland, Terje
在一项大型研究中，患有罕见疾病的经历被总结为“超出了专业人员的广泛知识领域”。32名Smith-Magenis综合征（SMS）患者的父母（31名母亲和17名父亲）参加了这项研究。一个现象学的方法被用来分析数据的主题和主题。出现了四个主题：这些活动包括展示的行为挑战、家长应对挑战行为的策略、家长对自身能力的体验以及家长对专业人员能力的体验，以及对SMS儿童及其行为挑战的理解。我们发现，有短信的孩子的父母经历过他们暴露在孩子的严重挑战行为中。家长们认为，他们与专业人士的误解更多，挑战性行为增加，因为有一些专业人士没有意识到或没有考虑到他们的支持服务的短信的具体特点。
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.