title: 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.
authors.affiliation: School of Psychological Sciences, Section for Clinical and Health Psychology, University of Manchester, UK.
authors.forename: Heather
authors.initials: H
authors.lastname: Smith
authors.affiliation: School of Psychological Sciences, Section for Clinical and Health Psychology, University of Manchester, UK.
authors.forename: John R E
authors.initials: JR
authors.lastname: Fox
authors.affiliation: School of Psychological Sciences, Section for Clinical and Health Psychology, University of Manchester, UK.
authors.forename: Penny
authors.initials: P
authors.lastname: Trayner
mesh_terms: D000223:Adaptation, Psychological; D006801:Humans; D007398:Interpersonal Relations; D036301:Qualitative Research; D012649:Self Concept; D012660:Semantics; D013981:Tic Disorders / Q000523:psychology*; D005879:Tourette Syndrome / Q000523:psychology
keywords: Tourette syndrome; lived experience; meta-synthesis; qualitative; tic disorder