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ERIC Number: EJ1430970
Record Type: Journal
Publication Date: 2022-Oct
Pages: 27
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1056-263X
EISSN: EISSN-1573-3580
Stigma and Adults with Tourette's Syndrome: "Never Laugh at Other People's Disabilities, Unless They Have Tourette's--Because How Can You Not?"
Melina Aikaterini Malli; Rachel Forrester-Jones
Journal of Developmental and Physical Disabilities, v34 n5 p871-897 2022
Tourette's syndrome (TS) is a condition that has been stigmatised and mocked in contemporary society, yet little is known about the subjective experience of those directly affected by it. Guided by Public and Patient Involvement (PPI) a mixed method design was used for this study to explore the experience of stigma in adults living with TS in the UK. A total of one hundred and ninety-nine adults participated in a cross-sectional online survey using an adapted version of the Discrimination and Stigma Scale (DISC-12) and the Perceived Quality of Life (PQoL) scale, twenty of whom were also interviewed using a semi-structured interview schedule. Quantitative findings indicated that participants experienced discrimination in numerous life domains; most prominently in education (75.4%), social life (71.4%), public transport (60.8%) and employment (54.3.%). The PQoL of adults with Tourette's was found to be negatively correlated with both "Enacted" and "Anticipated Discrimination" from the DISC-12 scale. Qualitative findings illustrated the pervasive nature of TS stigma, which expanded beyond micro-interactions, and which could be observed at a structural level. The peculiar impact of disparagement humour in the construction and promulgation of "othering" individuals with TS was also highlighted. Concealment and self-stigma were mechanisms commonly utilised by individuals to manage their "spoiled identity", inhibiting active and collective responses to stigmatisation. The study highlights how TS stigma acts as a barrier to social and economic participation for adults with the condition and helps identify factors that need to be considered when developing anti-stigma strategies.
Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://bibliotheek.ehb.be:2123/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A