Difficulties experienced by young people with Tourette syndrome in secondary school: a mixed methods description of self, parent and staff perspectives.

Georgina M Jackson,Ruth Wadman,Charlotte Beer,Cris Glazebrook

doi:10.1186/s12888-016-0717-9

Abstract

BackgroundTourette syndrome (TS) is a neurodevelopmental disorder characterised by motor and vocal tics. These involuntary movements and vocalizations can have a negative impact in the school environment. The paper presents a mixed methods description of the difficulties experienced by UK students with TS in secondary school, drawing on multiple perspectives.MethodsThirty-five young people with TS (11 to 18 years), their parents (n = 35) and key members of school staff (n = 54) took part in semi-structured interviews about TS-related difficulties in secondary school. Theme analysis was used to identify school difficulties reported by the young people, before moving on to analysis of the parents’ and staff members’ transcripts. The most frequently occurring themes from the young people’s accounts were then quantified in order to examine the level of agreement between informants and the association with clinical symptom severity.ResultsA range of TS-related difficulties with academic work, and social and emotional well-being in school were reported by young people, parents and staff. Three superordinate themes are described: 1) TS makes school work more difficult, 2) Negative response to TS from staff and fellow students and 3) TS makes it more difficult to manage emotions in school. The three difficulties most frequently reported by the young people were problems concentrating in class, unhelpful responses by school staff to tics and difficulties with other students such as name-calling and mimicking tics. Additional difficulties reported by more than a quarter of young people related to homework, examinations, writing, anxiety and managing anger in school. Having more severe motor tics was associated with reporting difficulties with homework and handwriting, whereas having more severe phonic tics was associated with reporting unhelpful responses from staff. Young people and parents agreed more strongly with each other than they did with staff regarding school difficulties faced by individuals, and staff generally reported fewer TS-related difficulties.ConclusionsTS can present a barrier to learning in several ways and can also affect interactions with others and emotional experiences in secondary school. Implications for supporting secondary school-aged students with TS are considered.

Highlights

Tourette syndrome (TS) is a neurodevelopmental disorder characterised by motor and vocal tics
By adopting a mixed methods analysis we aim to highlight the difficulties young people with TS routinely face in secondary school identified by themselves, their parents and school staff, and so inform strategies to better support them in the future
More problems with staff responses were associated with greater tic severity but generally concerns were not related to level of symptoms

Summary

Introduction

Tourette syndrome (TS) is a neurodevelopmental disorder characterised by motor and vocal tics. These involuntary movements and vocalizations can have a negative impact in the school environment. As many as 1 in 100 school-aged children are thought to have Tourette syndrome (TS), a condition involving involuntary motor and phonic tics that have been present for more than 12 months [1]. Tics typically first appear between the ages of 4 and 6 years and reach peak severity between 11 and 14 years, become less severe into adulthood [2]. Around 90 % of the TS population present with comorbid neuropsychiatric conditions or associated symptoms [4]. Associated conditions frequently co-occurring with TS include Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD). The majority of young people with TS are educated within mainstream schools, a higher percentage of young people in special educational settings have tics or meet the diagnostic criteria for TS (compared to regular educational settings) [5, 6]

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