ABSTRACT

Smith-Magenis syndrome (SMS) is a rare genetic syndrome. Students with SMS have a neurobehavioural phenotype which has been characterised as challenging for both parents and teachers. Challenging behaviour often has a negative impact on the person’s learning ability and is a hindrance in the learning environment. Challenging behaviour also impacts on teachers in terms of stress and burnout. The aim of this study was to explore what type of support the school staff needs in order to handle the challenging behaviour and academic development of students with SMS using Q methodology. Fourteen staff members working with students with SMS in Norway participated in the study by sorting 40 statements according to the Q methodology. The sorting was analysed based on the by-person factor analysis. Four viewpoints were identified as follows: 1) In control, 2) struggling, 3) Strugglers relying on parents, and 4) Support dependent. Several consensus statements were associated with the academic work of the students with SMS. The consensus statements regarding academic work showed that this is not a priority for these students. Support from the school’s leadership and colleagues is imperative, in addition to cooperation from parents, to provide safe and productive school environments for children with SMS.

摘要

Smith-Magenis 综合征 (SMS) 是一种罕见的遗传综合征。患有 SMS 的学生具有神经行为表型，其特征是对家长和老师都具有挑战性。具有挑战性的行为往往会对人的学习能力产生负面影响，是学习环境中的障碍。具有挑战性的行为也会在压力和倦怠方面对教师产生影响。本研究的目的是探讨学校教职工需要何种类型的支持，以便使用 Q 方法处理 SMS 学生的挑战性行为和学业发展。在挪威与 SMS 学生打交道的 14 名工作人员参与了这项研究，根据 Q 方法对 40 份陈述进行了分类。基于按人因素分析对排序进行了分析。四个观点被确定如下：1）在控制中，2）挣扎，3）依靠父母的挣扎者，以及4）支持依赖。一些共识声明与 SMS 学生的学业有关。关于学术工作的共识声明表明，这不是这些学生的优先事项。除了家长的合作外，学校领导和同事的支持也是必不可少的，以便为 SMS 儿童提供安全和富有成效的学校环境。