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. 2025 Jan;34(1):19-39.
doi: 10.1007/s00787-023-02332-3. Epub 2023 Dec 30.

Reframing stigma in Tourette syndrome: an updated scoping review

Kelly Pring  1 , Melina Malli  2 , Brandy W Hardy  1 , Stephen R Rapp  3 , Eric A Storch  4 , Jonathan W Mink  5 , Jaclyn M Martindale  6
Affiliations

Reframing stigma in Tourette syndrome: an updated scoping review

Kelly Pring et al. Eur Child Adolesc Psychiatry. 2025 Jan.

Abstract

Persistent tic disorders (PTD) such as Tourette's syndrome (TS) are common childhood-onset neurodevelopmental disorders. Stigmatization of individuals with these disorders remains an ongoing problem. The purpose of this scoping review is to serve as an updated review of the research regarding stigmatization in youth with PTD since the publication of the original systematic review about this topic in 2016. The electronic databases Embase, Web of Science, PubMed, PsycINFO, and CINAHL were searched. Of the 4751 initial articles screened after removing duplications, 47 studies met the inclusion criteria. The studies were examined under the social-ecological stigmatization model, which helps categorize stigmatization into individual, interpersonal, community, and structural levels and serves as a broader definition of stigmatization than the previous systematic review. On the individual level, youth with PTD had lower self-esteem than peers, often leading to fear of future stigmatization, avoidant behaviors, and self-stigmatization. They also experienced higher rates of bullying and other forms of abuse than peers at the interpersonal level. At the community level, youth with PTD faced discriminatory environments in school and work and limited availability of community services and healthcare access. At the structural level, knowledge about PTD was limited in the general population, often about the limited portrayals of PTD in the media. We hope that the broader scope of this review serves to help inform future efforts to decrease the stigmatization faced by this group.

Keywords: Discrimination; Scoping review; Social–ecological; Stigma; Tic; Tourette syndrome.

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Conflict of interest statement

Declarations. Conflicts of interest: EAS reports receiving research funding to his institution from the Ream Foundation, International OCD Foundation, and NIH. He was formerly a consultant for Brainsway and Biohaven Pharmaceuticals in the past 12 months. He owns stock less than $5000 in NView. He receives book royalties from Elsevier, Wiley, Oxford, American Psychological Association, Guildford, Springer, Routledge, and Jessica Kingsley. JWM serves as a Central Adjudicator for Emalex; as a DSMB member for PTC; and a consultant for TEVA, Applied Therapeutics, Sumitomo, and Theranexus. He has received research funding from Neurogene and Amicus. JMM receives research support from the Tourette Association of America, the American Board of Psychiatry and Neurology, and the NIH.

Figures

Fig. 1
Fig. 1
Social–ecological model of stigmatization in Tourette syndrome
Fig. 2
Fig. 2
PRISMA-ScR chart of included studies
See this image and copyright information in PMC

References

    1. Tinker SC, Bitsko RH, Danielson ML, Newsome K, Kaminski JW (2022) Estimating the number of people with Tourette syndrome and persistent tic disorder in the United States. Psychiat Res. 314:114684. 10.1016/j.psychres.2022.114684 - PMC - PubMed
    1. Freeman RD, Fast DG, Burd L, Kerbeshian J, Robertson MM, Sandor P (2000) An international perspective on Tourette syndrome: selected findings from 3500 individuals in 22 countries. Dev Med Child Neurol 42(7):436–447. 10.1017/S0012162200000839 - PubMed
    1. Hirschtritt ME, Lee PC, Pauls DL, Dion Y, Grados MA, Illmann C et al (2015) Lifetime prevalence, age of risk, and genetic relationships of comorbid psychiatric disorders in Tourette syndrome. JAMA Psychiat 72(4):325–333. 10.1001/jamapsychiatry.2014.2650 - PMC - PubMed
    1. Leckman JF, Zhang HP, Vitale A, Lahnin F, Lynch K, Bondi C et al (1998) Course of tic severity in Tourette Syndrome: the first two decades. Pediatrics 102(1):14–19. 10.1542/peds.102.1.14 - PubMed
    1. Groth C (2018) Tourette syndrome in a longitudinal perspective. Clinical course of tics and comorbidities, coexisting psychopathologies, phenotypes and predictors. Dan Med J 65(4):B5465 - PubMed

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