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Tourette Syndrome (TS) is a condition characterised by multiple, fluctuating tics, which typically start in early childhood. School-aged children with TS have poorer quality of life compared with the general population (Cutler, Murphy, Gilmour & Heyman, 2009); social, emotional and school functioning are particularly vulnerable. Tic severity and common comorbid difficulties such as attention-deficit/hyperactivity disorder (ADHD) and obsessive–compulsive disorder (OCD) are risk factors for poorer quality of life (Eddy et al., 2011; Storch et al., 2007b).
Children and adolescents with TS report ‘teasing’, bullying or victimisation by peers (Jagger et al., 1982; Shady, Fulton & Champion, 1988; Storch et al., 2007a). They struggle to conform to expectations of ‘normal’ behaviour and rate social isolation/embarrassment as disabling as the tics themselves (Cutler et al., 2009; Wand, Matazow, Shady, Furer & Staley, 1993). Young people with tics are rated less favourably and less socially acceptable than those without tics, particularly if they have additional difficulties such as ADHD (Bawden, Stokes, Camfield, Camfield & Salisbury, 1998; Boudjouk, Woods, Miltenberger & Long, 2000; Friedrich, Morgan & Devine, 1996; Stokes, Bawden, Camfield, Backman & Dooley, 1991). Children have more difficulties with relationships within their wider social network (such as with classmates) than in sustaining close friendships (Cutler et al., 2009).
Psychoeducational approaches for the child with TS and important others (i.e. parents, teachers and peers) are a crucial component of any treatment package (Verdellen, Van De Griendt, Hartmann, Murphy & The ESSTS Guidelines group, 2011; Woods, Conelea & Himle, 2010). Given the potential social difficulties, particular emphasis is placed on educating peers, for example, using classroom presentations. However, there is little research into the extent to which presentations have been used or their effectiveness. As TS is estimated to affect around 1% of 5–18-year olds worldwide, a large number of children stand to benefit from further research in this area.
A few studies have examined the use of experimental interventions to change attitudes of peers to TS (Friedrich et al., 1996; Holtz & Tessman, 2007; Marcks, Berlin, Woods & Davies, 2007; Woods, 2002; Woods, Koch & Miltenberger, 2003; Woods & Marcks, 2005). All but one found that provision of information leads to more positive attitudes towards individuals with TS in both adults and children. However, all studies took place in laboratory settings and failed to consider the experiences of individuals with TS, limiting the generalisability of their findings.
The current research therefore examined the impact of a psychoeducational intervention for peers of children with TS (a classroom presentation) in a naturalistic setting. We obtained the perspectives of those involved in planning and giving the presentation [the child, their parent(s) and teacher] and those receiving it (the child's classmates). Because of the paucity of previous research, the study used a mixed-methods, multiple case-study design (with a focus on qualitative data) to understand in detail how the intervention affected the child with TS (index child) and their classmates. It addressed the following research questions:
- How do children with TS, their parents, teachers and classmates experience the classroom presentation, particularly in relation to the potential impact on the child's peer relationships?
- Do the child's classmates report a change in knowledge about TS and attitudes towards a child with TS following the presentation?
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This study used both quantitative and qualitative methods to explore the effectiveness of a psychoeducational intervention (a classroom presentation) for peers of children with TS. Questionnaires were used to establish whether the approach improved knowledge and attitudes of peers towards children with TS. Interviews and focus groups examined the processes by which any changes may have occurred, and the experience of the intervention from the perspective of the child with TS, their parents, teachers and classmates.
Overall, classmates' knowledge of TS and attitudes towards children with the condition improved following the presentation, as indicated by questionnaire scores. In one of the four schools, however, attitudes did not change; the data do not provide sufficient information to explain this negative finding, especially as qualitatively, the child with TS and his parent reported changes in classmates' attitudes and behaviours towards him.
The changes in knowledge and attitudes found quantitatively were reflected in peers' responses in the focus groups and in the comments of the children with TS, their parents and teachers in the interviews. There were indications that the actual behaviour of peers towards the child with the condition may have also changed. As knowledge is proposed to influence attitudes, which to some degree predict behaviour, provision of information may be at least partially responsible for the change in attitudes and behaviours noted (Vignes et al., 2009). It is likely that group processes also influenced change in classmates' individual attitudes following the intervention. Information in the presentation (such as how to treat children with TS) may have influenced classmates' perception of what the majority's view of TS is. If each classmate believes that the majority of children hold a more accepting attitude towards TS, they may also take a more empathic view, and demonstrate prosocial behaviour towards the child (Rivis & Sheeran, 2003). Disclosure about the child's condition during the presentation may have had a positive impact on classmates' attitudes as they could relate the presentation content more easily to their own experiences (Rosenbaum, 2010).
Positive changes in the child with TS were also noted in the interviews with the children, their parents and teachers. Their accounts suggested that the children became more accepting of their condition following the presentation. For example, they appeared to feel less different from their classmates, more confident and relaxed, less focused on suppressing their tics and more involved in other activities. Again, disclosure of the child's condition during the presentation appeared particularly important in the process of bringing about change; the one child who chose not to disclose did not appear to gain the same benefits.
It may have been that a shift in the child's attentional focus was an important mediator of the changes in self-concept. Cognitive biases such as inward focused attention or hypervigilance to threat have been found to be important in psychological difficulties such as anxiety (Clark, 1999). Prior to the presentation, the children with TS appeared focused on monitoring their tics, which may have led them to overestimate others' negative reactions. Following the presentation, their attentional focus may have shifted to other tasks, giving them the impression that they were more accepted by others, further enabling them to ‘forget’ about their TS and ‘get on with’ other activities.
A social-ecological model (Bronfenbrenner, 1979) offers a potentially useful theoretical framework for understanding the relationship between the impact of the presentation on the classmates and the impact on the child with TS. It highlights the importance of intervening within a child's social world to produce positive changes within the child themselves. The current findings suggest that a significant development in the self-concept of the child with TS occurred following a change in their school environment; provision of educational information in the context of disclosure appeared to lead to greater empathy and tolerance from peers, allowing the child to become more accepting of their condition.
It remains unclear how far the findings may generalise to other children with TS. The opt-in recruitment design led to a self-selected sample of enthusiastic participants who were keen to go ahead with the presentation. Not all children, families and schools will want to initiate or engage in this process. The inclusion of one child who did not disclose his condition provided a useful comparison, suggesting that the presentation was more successful when disclosure took place. In addition, the children with TS were all 9–10-year-old boys of a largely white British demographic, which limits generalisability. Finally, it remains unclear whether the impact of the presentation varies depending on the severity of the child's TS. The children who disclosed in the study had more severe TS with comorbid ADHD and OCD, whereas the child who chose not to disclose had pure or uncomplicated TS with fewer, milder tics. It was not possible to establish whether the presentation had less impact for this child due to the lack of disclosure, milder tics or other reasons.
The naturalistic study design meant there were uncontrolled differences between schools (such as school ethos/culture or class dynamics). The presence of the researcher in the classroom may also have influenced the outcomes of the presentation and detracted from the naturalistic study design. In addition, we did not examine whether the changes were maintained beyond 2-week follow-up, and there was no control group to provide comparison data.
Several validity issues also need to be considered. The quantitative measures of knowledge and attitudes were developed for this study, so their validity remains unknown. The focus group data may have reflected a social desirability bias; the children in the focus groups were very positive about the presentation and about TS in general, and there may have been some reluctance to express more negative views. However, competing and less positive views were expressed by some children, suggesting that the focus group format did not constrain open discussion; indeed, the advantages of using focus groups with children, for example in facilitating discussion, have been highlighted in the literature (Cutler et al., 2009; Farquar, 1999).
Implications for research and practice
The mixed-methods design of this study, incorporating quantitative and qualitative elements, provided information about the effects of a classroom presentation (on both the child with TS and their classmates) and the processes by which these effects may have come about. Several hypotheses generated by the qualitative data could be tested in larger, quantitative studies, for example: (a) that psychoeducation increases classmates' empathy, which leads to more prosocial behaviours towards the child with TS, and (b) that disclosure is a key component in bringing about change in classmates' attitudes and the impact on the child with TS. Mapping the relationship between knowledge, attitudes and actual behaviour change in a larger number of schools would provide a basis for developing a theoretical model of change.
The consistency of the present findings across four schools is encouraging. It suggests that educational presentations have the potential to improve knowledge and attitudes towards TS, and impact positively on the self-concept of the child with TS. This is likely to be of interest to clinicians as well as children with TS, their families and teachers. A challenge will be to encourage the use of educational presentations across the age range outside of a research context. The effectiveness of this simple, school-based presentation indicates that interventions targeting the child's social environment should be carried out more routinely alongside, or as an alternative to, one-to-one therapeutic interventions. Clinicians could work with families and schools to support this process, using the current research as a model.