{"title":"Me, My Tics and I: An Exploration of Self-Identity and its Implications for Psychological Wellbeing in Young Women with Tourette's Syndrome.","authors":"Janine Coleman, Yvonne Melia","doi":"10.1007/s10882-023-09911-x","DOIUrl":null,"url":null,"abstract":"<p><p>Women with Tourette's syndrome (TS) continue to be under-researched, despite female sex being associated with increased tic-related impairment in adulthood. Existing literature indicates that individuals with TS are more likely than the general population to report self-stigma, but little is known about the subjective identities of women with TS and how this relates to psychological wellbeing. Semi-structured interviews were conducted via Zoom with a purposive sample of 11 females. All were diagnosed with TS and aged 18-28. Data was transcribed verbatim and thematic analysis applied. Five themes were established: \"I'm not normal\", \"I just want to be me\", I'm a \"people pleaser\", seeing oneself as an \"outsider\", and \"it's just part of me…it's not going anywhere\". Difficulties with self-acceptance and the autonomy to be one's true self were noted and appeared to be intensified by stereotypical gender roles and attempts to conceal tics. Findings also suggested that personal growth and feelings of mastery can be achieved through embracing TS as part of one's identity, or recognising it as just one aspect of the self. Psychological support focused on accepting and living with tics rather than reducing them may benefit this population and is currently difficult to access. Consideration should also be given to improving the availability of support groups where women with TS can meet others like themselves.</p><p><strong>Supplementary information: </strong>The online version contains supplementary material available at 10.1007/s10882-023-09911-x.</p>","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":" ","pages":"1-23"},"PeriodicalIF":1.5000,"publicationDate":"2023-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10175913/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Developmental and Physical Disabilities","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s10882-023-09911-x","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
引用次数: 0
Abstract
Women with Tourette's syndrome (TS) continue to be under-researched, despite female sex being associated with increased tic-related impairment in adulthood. Existing literature indicates that individuals with TS are more likely than the general population to report self-stigma, but little is known about the subjective identities of women with TS and how this relates to psychological wellbeing. Semi-structured interviews were conducted via Zoom with a purposive sample of 11 females. All were diagnosed with TS and aged 18-28. Data was transcribed verbatim and thematic analysis applied. Five themes were established: "I'm not normal", "I just want to be me", I'm a "people pleaser", seeing oneself as an "outsider", and "it's just part of me…it's not going anywhere". Difficulties with self-acceptance and the autonomy to be one's true self were noted and appeared to be intensified by stereotypical gender roles and attempts to conceal tics. Findings also suggested that personal growth and feelings of mastery can be achieved through embracing TS as part of one's identity, or recognising it as just one aspect of the self. Psychological support focused on accepting and living with tics rather than reducing them may benefit this population and is currently difficult to access. Consideration should also be given to improving the availability of support groups where women with TS can meet others like themselves.
Supplementary information: The online version contains supplementary material available at 10.1007/s10882-023-09911-x.
期刊介绍：
The Journal of Developmental and Physical Disabilities is an interdisciplinary forum for the publication of original research and clinical reports from a variety of fields serving persons with developmental and physical disabilities. Submissions from researchers, clinicians, and related professionals in the fields of psychology, rehabilitation, special education, kinesiology, counseling, social work, psychiatry, nursing, and rehabilitation medicine are considered. Investigations utilizing group comparisons as well as single-case experimental designs are of primary interest. In addition, case studies that are of particular clinical relevance or that describe innovative evaluation and intervention techniques are welcome. All research and clinical reports should contain sufficient procedural detail so that readers can clearly understand what was done, how it was done, and why the strategy was selected. Rigorously conducted replication studies utilizing group and single-case designs are welcome irrespective of results obtained. In addition, systematic reviews, meta-analyses, and theoretical discussions that contribute substantially to understanding the problems and strengths of persons with developmental and physical disabilities are considered for publication. Authors are encouraged to preregister empirical studies, replications, systematic reviews, and meta-analyses in a relevant public database and to include such information with their submission to the journal. Authors are also encouraged, where possible and applicable, to deposit data that support the findings of their research in a public repository (see detailed “Research Data Policy” module in the journal’s Instructions for Authors). In response to the need for increased clinical and research endeavors with persons with developmental and physical disabilities, the journal is cross-categorical and unbiased methodologically.
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