Before Your Very Eyes: Illness, Agency, and the Management of Tourette Syndrome

Buckser, Andrew

doi:10.1111/j.1548-1387.2008.00013.x

Cited by 24 publications

(19 citation statements)

References 45 publications

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“…This avoided aversive stigmatization such as bullying, and instead facilitated the opportunity for social acceptance and integration. However, the literature suggests that such strategies could further maintain social/cultural stigma or confusion about control, illness, and society's understanding of TS (Buckser, ). Despite the use of such strategies, individuals expressed concern for their future.…”

Section: Resultsmentioning

confidence: 99%

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

Smith

Fox

Trayner

2015

British J of Psychology

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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.

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Section: Resultsmentioning

confidence: 99%

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

Smith

Fox

Trayner

2015

British J of Psychology

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“…Only 17 of these reported data from independent projects as two sets of articles discussed data from the same study [30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48] (Fig. 1).…”

Section: Included Studiesmentioning

confidence: 93%

“…Nevertheless, by studying the articles providing narratives of individuals with TS, the concept of stigma or the components of it emerge [41][42][43][44][45][46][47][48]. It should be noted, however, that the perceived public stigma in the reports of individuals with TS may also reflect and be influenced by self-stigma depression, anxiety [5] or anticipated rejection [57].…”

Section: Qualitative Studiesmentioning

confidence: 97%

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

Malli

Forrester‐Jones

Murphy

2015

Eur Child Adolesc Psychiatry

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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.

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“…O'Connor's study however, examines representations of illness on groups of individuals with various conditions rather than focussing on TS and therefore fails to delve into the specific experiences of adults with TS. Buckser's (2008) ethnographic study indicated that the suppression and concealment of tics by people with TS appeared to be a mechanism to resist the undesirable disability labeladults with TS wishing to dissociate themselves from 'disabled' groups. Yet, self-concept and social identity were not discussed in Buckser's study and there is a gap in the literature that provides a broader understanding of the individuals' lived experience.…”

Section: Introductionmentioning

confidence: 99%

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

2019

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Research suggests that adults with Tourette's syndrome (TS) may face unique challenges in their everyday life due to their condition. To date, however, only a limited number of studies exist in relation to their life experiences and conception of identity. This study, which we believe to be the first of its kind, aimed to expand the literature by 'giving voice' to this population, and to evaluate the social and personal cost of living with TS during adulthood. Semi-structured interviews were conducted with sixteen adults with Tourette's that focused on how they negotiated their identity and experiences. Transcripts of recorded interviews were subjected to interpretative phenomenological analysis. Three superordinate themes emerged: a) "Incorporating Tourette's syndrome into self" revealed two divergent ways in which TS was merged into the participants' selfidentity, either by reconciling with it or fighting against it; b) "Interpersonal interaction" covered issues relating to negative and supportive ties as a result of their condition; and finally, c) "The solitude of Tourette's syndrome" described the loneliness that stems from the condition. The current findings suggest that the experience of the participants is a multidimensional one related to self-identity threat, social withdraw, and self-stigma. Implications for clinical practice on the topic are discussed.

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Before Your Very Eyes: Illness, Agency, and the Management of Tourette Syndrome

Cited by 24 publications

References 45 publications

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

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

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

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

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