Stigma in youth with Tourette’s syndrome: a systematic review and synthesis

Abstract

Tourette's syndrome (TS) is a childhood onset neurodevelopmental disorder, characterised by tics. To our knowledge, no systematic reviews exist which focus on examining the body of literature on stigma in association with children and adolescents with TS. The aim of the article is to provide a review of the existing research on (1) social stigma in relation to children and adolescents with TS, (2) self-stigma and (3) courtesy stigma in family members of youth with TS. Three electronic databases were searched: PsycINFO, PubMed and Web of Science. Seventeen empirical studies met the inclusion criteria. In relation to social stigma in rating their own beliefs and behavioural intentions, youth who did not have TS showed an unfavourable attitude towards individuals with TS in comparison to typically developing peers. Meanwhile, in their own narratives about their lives, young people with TS themselves described some form of devaluation from others as a response to their disorder. Self-degrading comments were denoted in a number of studies in which the children pointed out stereotypical views that they had adopted about themselves. Finally, as regards courtesy stigma, parents expressed guilt in relation to their children's condition and social alienation as a result of the disorder. Surprisingly, however, there is not one study that focuses primarily on stigma in relation to TS and further studies that examine the subject from the perspective of both the 'stigmatiser' and the recipient of stigma are warranted.

“Tourette’s Is a Lonely Place”: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette’s Syndrome

“…The wider literature suggests that the complexity of TS extends beyond the physical symptoms. Social adjustment difficulties (Cutler et al 2009), social-and self-stigmatisation (Malli et al 2016;Smith et al 2015), isolation, bullying, peer rejection (Malli and Forrester-Jones 2017;Wadman et al 2013) and poor sense of self-concept due to personalisation of the illness (Hanks et al 2016) are some of the hurdles experienced by children and adolescents affected by TS.…”

“…Additionally, they may face higher difficulties in social relationships (Conelea et al 2013), increased familial/marital stress (Hubka et al 1988), greater propensity for mood and anxiety disturbances (Evans et al 2016), and ultimately a diminished quality of life (QoL) (Conelea et al 2013). There is, however, a scarcity of research exploring the holistic impact of living with TS as an adult, the consequences of the challenges associated with the condition, and how adults with TS view themselves and construct their social and self-identity (Malli et al 2016). By social identity we are referring to the sense of self people derive from their membership in a specific group and the emotional value they attribute to this membership (Tajfel 1972).…”

Longitudinal relationships between maternal depressive/anxious symptoms and children’s tics

“…Two causes could be considered for the parenting stress in parents of children with tics: the influence of tics themselves and comorbidities. Tics could have a negative impact on family relationships because tics are likely to cause social misperceptions or stigma (14,(48)(49)(50). Parents could become overprotective of, worried about, struggling to accept or trying to control children's tics (14).…”

“I’m not being rude, I’d want somebody normal”: Adolescents’ Perception of their Peers with Tourette’s Syndrome: an Exploratory Study

“…There is a growing body of research that demonstrates individuals with Tourette’s experience social difficulties and endure social stigmatisation (Malli et al 2016; Smith et al 2015). A recent systematic review and synthesis indicated that children and adolescents with Tourette’s syndrome report impaired peer relations and are at a significantly higher risk of stigmatisation and victimisation compared to their typically developing peers, including name-calling, relational bullying, teasing, ridicule, discrimination and marginalisation (Malli et al 2016).…”

“…A recent systematic review and synthesis indicated that children and adolescents with Tourette’s syndrome report impaired peer relations and are at a significantly higher risk of stigmatisation and victimisation compared to their typically developing peers, including name-calling, relational bullying, teasing, ridicule, discrimination and marginalisation (Malli et al 2016). …”