The Importance of School Leadership Support when Working with Students with Smith-Magenis Syndrome–A Q Methodology Study

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.