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

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.

Differentiating tic-related from non-tic-related impairment in children with persistent tic disorders

“…Motor tic intensity, complexity, and interference significantly correlated with tic-related impairment in school activities. Such results are consistent with work by Espil et al [5] and Wadman et al [10] who demonstrated that these dimensions predicted impairment in school productivity by influencing students’ attention and writing skills. Likewise, motor tics that interrupt the flow of behavior can be difficult to manage in a school and/or social environment.…”

“…Tic impairment in specific school-related tasks, such as writing, were also more attributed to tics compared to non-tic symptoms. One possible explanation for this is tics involving the hands or arms (e.g., tensing up hands, wrist flick/jerk, and throwing pens) likely interfere with the ability to write [10]. Regarding social activities, being teased by peers and impairment in activities such as going to the movies were more attributed to tics than other concerns.…”

“…Likewise, motor tics that interrupt the flow of behavior can be difficult to manage in a school and/or social environment. For instance, hand tics (e.g., tensing up hands, wrist flick/jerk, and throwing pens) can make taking tests and doing homework extremely challenging [10]. Results also showed that motor tic complexity correlated with tic-related impairment in home and social activities.…”

Development and Validation of the Social Adjustment Scale for Adolescents with Tourette Syndrome in Taiwan

“…All of these comorbidities may result in lower self-esteem, more psychosocial stress, and poorer psychosocial functioning (Eapen, Cavanna, & Robertson, 2016;Lin et al, 2007). The uncontrollable symptoms of TS and the associated comorbid problems not only cause physical discomfort but also difficulties in concentration and academic learning in adolescents (Lee, Mu, Wang, & Wang, 2016;Wadman, Glazebrook, Beer, & Jackson, 2016). In addition to the physical effects, handling tic symptoms in their children frequently frustrates the parents of TS children over the long term.…”

Tourette syndrome research highlights from 2016

“…Wadman and colleagues performed an in-depth study of 35 youth with TS, their parents, and school personnel to understand what problems TS caused at school 88 . Their conclusion will seem sadly familiar to TS patients and clinicians: “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.”…”