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Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences

BACKGROUND: People living with a tic disorder (TD)—such as Tourette syndrome (TS)—experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult fo...

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Autores principales: Perkins, Victoria, Coulson, Neil S, Davies, E Bethan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7671842/
https://www.ncbi.nlm.nih.gov/pubmed/33141089
http://dx.doi.org/10.2196/18099
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author Perkins, Victoria
Coulson, Neil S
Davies, E Bethan
author_facet Perkins, Victoria
Coulson, Neil S
Davies, E Bethan
author_sort Perkins, Victoria
collection PubMed
description BACKGROUND: People living with a tic disorder (TD)—such as Tourette syndrome (TS)—experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult for this population to access face-to-face support for tics, and so online support communities offer one avenue for support from peers facing similar experiences. However, little is known about how online support communities may be used by people with TS and other TDs, and by others (eg, parents, caregivers) supporting a person with TS/TD. OBJECTIVE: This study aimed to explore users’ experiences of participation in online support communities for TS and TDs. METHODS: In total, 90 respondents (aged 13-62 years; 62% [56/90] female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and TDs. Respondents were people living with TS/TD themselves (n=68) or supportive others of someone with TS/TD (eg, parent, sibling, spouse; n=14), or both (n=8). The online survey contained open-ended questions eliciting their self-reported motivations for using online communities, their benefits and drawbacks of participation, and whether online support communities affected offline management of tics. Responses were analyzed using thematic analysis. RESULTS: Seven overarching themes captured experiences of using online support communities for TS/TDs. The overwhelming reason for their use was to find accessible support due to a lack of offline face-to-face support. Online support communities were valued sources of informational and emotional support, and also had a positive impact upon helping users’ psychological well-being. Online communities helped provide a space where people with TS/TDs could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of TDs were main disadvantages arising from using online support communities, alongside conflict arising within online communities. CONCLUSIONS: The findings suggest that online support communities appear to offer valuable informational and emotional support to those living with TS/TD and their families too, especially given the lack of locally available support. This facilitates a sense of community online, which can help users in overcoming long-standing social isolation and aid self-reported improvements in psychosocial well-being. Users reported some drawbacks in engaging with online support communities, such as conflict between different types of users and triggering content, which negatively affected experiences of community participation.
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spelling pubmed-76718422020-11-20 Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences Perkins, Victoria Coulson, Neil S Davies, E Bethan J Med Internet Res Original Paper BACKGROUND: People living with a tic disorder (TD)—such as Tourette syndrome (TS)—experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult for this population to access face-to-face support for tics, and so online support communities offer one avenue for support from peers facing similar experiences. However, little is known about how online support communities may be used by people with TS and other TDs, and by others (eg, parents, caregivers) supporting a person with TS/TD. OBJECTIVE: This study aimed to explore users’ experiences of participation in online support communities for TS and TDs. METHODS: In total, 90 respondents (aged 13-62 years; 62% [56/90] female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and TDs. Respondents were people living with TS/TD themselves (n=68) or supportive others of someone with TS/TD (eg, parent, sibling, spouse; n=14), or both (n=8). The online survey contained open-ended questions eliciting their self-reported motivations for using online communities, their benefits and drawbacks of participation, and whether online support communities affected offline management of tics. Responses were analyzed using thematic analysis. RESULTS: Seven overarching themes captured experiences of using online support communities for TS/TDs. The overwhelming reason for their use was to find accessible support due to a lack of offline face-to-face support. Online support communities were valued sources of informational and emotional support, and also had a positive impact upon helping users’ psychological well-being. Online communities helped provide a space where people with TS/TDs could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of TDs were main disadvantages arising from using online support communities, alongside conflict arising within online communities. CONCLUSIONS: The findings suggest that online support communities appear to offer valuable informational and emotional support to those living with TS/TD and their families too, especially given the lack of locally available support. This facilitates a sense of community online, which can help users in overcoming long-standing social isolation and aid self-reported improvements in psychosocial well-being. Users reported some drawbacks in engaging with online support communities, such as conflict between different types of users and triggering content, which negatively affected experiences of community participation. JMIR Publications 2020-11-03 /pmc/articles/PMC7671842/ /pubmed/33141089 http://dx.doi.org/10.2196/18099 Text en ©Victoria Perkins, Neil S Coulson, E Bethan Davies. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 03.11.2020. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Perkins, Victoria
Coulson, Neil S
Davies, E Bethan
Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences
title Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences
title_full Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences
title_fullStr Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences
title_full_unstemmed Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences
title_short Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences
title_sort using online support communities for tourette syndrome and tic disorders: online survey of users’ experiences
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7671842/
https://www.ncbi.nlm.nih.gov/pubmed/33141089
http://dx.doi.org/10.2196/18099
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