The lived experiences of individuals with Tourette syndrome or tic disorders: A meta‐synthesis of qualitative studies

Abstract

There is a growing body of qualitative literature describing the lived experiences of people with tic disorders (TDs). The aim of this paper was to conduct a systematic review of this literature, synthesizing the perspectives of individuals on their experiences. Meta-synthesis methodology was utilized to review and draw together findings from 10 articles, from which key concepts were extracted, and over-arching themes generated. Six themes were identified to encompass the experience of TDs, including (1) cultural, semantic issues of the condition; (2) negative experiences in organizations and treatment; (3) the value and negative impact on interpersonal relationships; (4) personal identity in the constant presence of TDs; (5) concerns for the future; and (6) strategies to control and manage the observable presence of tics. Adaptive coping strategies were found to encompass continuous social adaptation, strategies to manage tics and social perceptions, self-acceptance, advocacy, and support from others. The results highlighted the significant role of social and cultural issues related to understanding and stigma, which underpinned many of the lived experiences. Implications for clinical practice in supporting individuals with TDs were also highlighted.

Mortality risk in a nationwide cohort of individuals with tic disorders and with tourette syndrome

“…Tic disorders including Tourette syndrome (TS) are neuropsychiatric disorders affecting approximately 1% of children and young people . The disorder is characterized by motor and vocal tics that tend to recede during puberty in the majority of individuals, whereas adults with persistent TS often present with high rates of comorbidity, low psychosocial function, and compromised quality of life . These factors may impact life expectancy, but to our knowledge, no prior studies have addressed all‐cause mortality among individuals with tics or TS.…”

“…[1][2][3] The disorder is characterized by motor and vocal tics that tend to recede during puberty in the majority of individuals, 4 whereas adults with persistent TS often present with high rates of comorbidity, 5 low psychosocial function, 6 and compromised quality of life. 1,7,8 These factors may impact life expectancy, but to our knowledge, no prior studies have addressed all-cause mortality among individuals with tics or TS. Beyond a generally increased mortality risk in persons with psychiatric disorders, 9 several large-scale studies have reported increased rates of premature death in individuals with attentiondeficit/hyperactivity disorder (ADHD), 10 obsessivecompulsive disorder (OCD), 11 and substance use disorders (SUD), 12 all conditions that frequently co-occur with TS.…”

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).…”

“…Tics are so common that ICD-10 describes tics can be seen in about 10-20% of children in general population (1)(2)(3)(4) although a rate of medical consultation rate of children with tics is low (5,6). Tics tend to be remitted with age (7)(8)(9)(10)(11)(12), but tics pose a psycho-social burden on children and their family (7,13,14). Drug and behavioral therapies are the means to directly reduce tics (7), but there are problems such as side effects of drug therapy and limited facilities available for behavioral therapy.…”

“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).…”