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Letting Tourette's be: The importance of understanding lived experience in research and the clinic

Jo Bervoets Orcid Logo, Diana Beljaars, Hanne De Jaegher Orcid Logo

Developmental Medicine and Child Neurology, Volume: 65, Issue: 11, Pages: 1422 - 1428

Swansea University Author: Diana Beljaars

  • Bervoets Beljaars De Jaegher (2023) Letting Tourette s be (DMCN) published version.pdf

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DOI (Published version): 10.1111/dmcn.15545

Abstract

The most common clinical research question regarding Tourette syndrome focuses on tic reduction, which follows from classical ‘lack of inhibition’ models. Rooted in views about brain deficits, this model suggests that with higher severity and frequency, tics are necessarily disruptive and should the...

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Published in: Developmental Medicine and Child Neurology
ISSN: 0012-1622 1469-8749
Published: Wiley 2023
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URI: https://cronfa.swan.ac.uk/Record/cronfa62639
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first_indexed 2023-02-09T00:46:14Z
last_indexed 2023-03-07T04:17:48Z
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spelling v2 62639 2023-02-09 Letting Tourette's be: The importance of understanding lived experience in research and the clinic 75d2c4b3a29704ce924374f4ff0735bf Diana Beljaars Diana Beljaars true false 2023-02-09 HDAT The most common clinical research question regarding Tourette syndrome focuses on tic reduction, which follows from classical ‘lack of inhibition’ models. Rooted in views about brain deficits, this model suggests that with higher severity and frequency, tics are necessarily disruptive and should therefore be inhibited. However, emerging calls from people with lived experience of Tourette syndrome suggest that this is too narrow a definition. This narrative literature review analyses issues with brain deficit views and qualitative research on tic context and feelings of compulsion. The results suggest the need for a more positive and encompassing theoretical and ethical position on Tourette&apos;s. The article puts forward an enactive analytical approach of ‘letting be’, that is, approaching a phenomenon without forcing preconceived reference structures onto it. We suggest using the identity-first term ‘Tourettic’. Prioritizing the perspective of the ‘Tourettic patient’, it urges attentiveness to the everyday issues diagnosed people encounter and how these are embedded in further life. This approach highlights the strong relationship between the Tourettic persons&apos; felt impairment, their adoption of an outsider&apos;s perspective, and feeling under constant scrutiny. It suggests that this felt impairment of tics can be reduced by creating a physical and social environment in which the person is ‘let be’ but not ‘let go of’. Journal Article Developmental Medicine and Child Neurology 65 11 1422 1428 Wiley 0012-1622 1469-8749 1 11 2023 2023-11-01 10.1111/dmcn.15545 Tourette syndrome, Tourette's, Tourettic, neurodiversity COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University Another institution paid the OA fee H2020 European Research Council. Grant Number: 804881 2024-05-07T11:37:43.2752150 2023-02-09T00:37:49.2574827 Faculty of Science and Engineering School of Biosciences, Geography and Physics - Geography Jo Bervoets 0000-0003-4213-6873 1 Diana Beljaars 2 Hanne De Jaegher 0000-0001-7273-6410 3 62639__26655__99ae7a9215ca4473a4c75b81cf00ca95.pdf Bervoets Beljaars De Jaegher (2023) Letting Tourette s be (DMCN) published version.pdf 2023-02-22T11:05:14.5632068 Output 156402 application/pdf Version of Record true © 2023 The Authors. Distributed under the terms of a Creative Commons Attribution 4.0 License (CC BY 4.0). true eng http://creativecommons.org/licenses/by/4.0/
title Letting Tourette's be: The importance of understanding lived experience in research and the clinic
spellingShingle Letting Tourette's be: The importance of understanding lived experience in research and the clinic
Diana Beljaars
title_short Letting Tourette's be: The importance of understanding lived experience in research and the clinic
title_full Letting Tourette's be: The importance of understanding lived experience in research and the clinic
title_fullStr Letting Tourette's be: The importance of understanding lived experience in research and the clinic
title_full_unstemmed Letting Tourette's be: The importance of understanding lived experience in research and the clinic
title_sort Letting Tourette's be: The importance of understanding lived experience in research and the clinic
author_id_str_mv 75d2c4b3a29704ce924374f4ff0735bf
author_id_fullname_str_mv 75d2c4b3a29704ce924374f4ff0735bf_***_Diana Beljaars
author Diana Beljaars
author2 Jo Bervoets
Diana Beljaars
Hanne De Jaegher
format Journal article
container_title Developmental Medicine and Child Neurology
container_volume 65
container_issue 11
container_start_page 1422
publishDate 2023
institution Swansea University
issn 0012-1622
1469-8749
doi_str_mv 10.1111/dmcn.15545
publisher Wiley
college_str Faculty of Science and Engineering
hierarchytype
hierarchy_top_id facultyofscienceandengineering
hierarchy_top_title Faculty of Science and Engineering
hierarchy_parent_id facultyofscienceandengineering
hierarchy_parent_title Faculty of Science and Engineering
department_str School of Biosciences, Geography and Physics - Geography{{{_:::_}}}Faculty of Science and Engineering{{{_:::_}}}School of Biosciences, Geography and Physics - Geography
document_store_str 1
active_str 0
description The most common clinical research question regarding Tourette syndrome focuses on tic reduction, which follows from classical ‘lack of inhibition’ models. Rooted in views about brain deficits, this model suggests that with higher severity and frequency, tics are necessarily disruptive and should therefore be inhibited. However, emerging calls from people with lived experience of Tourette syndrome suggest that this is too narrow a definition. This narrative literature review analyses issues with brain deficit views and qualitative research on tic context and feelings of compulsion. The results suggest the need for a more positive and encompassing theoretical and ethical position on Tourette&apos;s. The article puts forward an enactive analytical approach of ‘letting be’, that is, approaching a phenomenon without forcing preconceived reference structures onto it. We suggest using the identity-first term ‘Tourettic’. Prioritizing the perspective of the ‘Tourettic patient’, it urges attentiveness to the everyday issues diagnosed people encounter and how these are embedded in further life. This approach highlights the strong relationship between the Tourettic persons&apos; felt impairment, their adoption of an outsider&apos;s perspective, and feeling under constant scrutiny. It suggests that this felt impairment of tics can be reduced by creating a physical and social environment in which the person is ‘let be’ but not ‘let go of’.
published_date 2023-11-01T11:37:42Z
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