ArticleJournal of medical Internet research2020
Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users' Experiences.
Article in Journal of medical Internet research, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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Who cites it
16 citing papers in PubMed.
- The Role of Digital Tools in Meeting the Needs of Adults With Tourette Syndrome: A Human-Centered Design Approach.JMIR formative research · 2026Article
- Exploring Empowerment in Online Support Communities for People Living With Tic Disorders and Tourette Syndrome: Qualitative Survey Study of User Experiences.JMIR formative research · 2025Article
- ImproviNg Tic services in EnglaND: a multi-method study to explore existing healthcare service provision for children and young people with tics and Tourette syndrome.BMJ mental health · 2025Article
- Exploring Conceptualizations of COVID-19 Risk in Ideologically Distinct Online Communities: A Computational Grounded Theory Analysis.Journal of medical Internet research · 2025Article
- Review
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- How does Tourette syndrome impact adolescents' daily living? A text mining study.European child & adolescent psychiatry · 2023Article
- Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19-Infected Social Media Users: Survey of US-Based Adults.JMIR formative research · 2023Article
- Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings.Journal of medical Internet research · 2022Article
- Misinformation in Italian Online Mental Health Communities During the COVID-19 Pandemic: Protocol for a Content Analysis Study.JMIR research protocols · 2022Article
- Pain points in parents' interactions with newborn screening systems: a qualitative study.BMC pediatrics · 2022Article
- Tourette Syndrome Treatment Updates: a Review and Discussion of the Current and Upcoming Literature.Current neurology and neuroscience reports · 2022Review
- "I'm in pain and I want help": An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders.Frontiers in psychiatry · 2022Article
- TikTok Tourette's: Are We Witnessing a Rise in Functional Tic-Like Behavior Driven by Adolescent Social Media Use?Psychology research and behavior management · 2022Review
- Tourette syndrome research highlights from 2020.F1000Research · 2022Review
- Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study.RMD open · 2021Article
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPeople 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.
objectiveThis study aimed to explore users' experiences of participation in online support communities for TS and TDs.
methodsIn 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.
resultsSeven 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.
conclusionsThe 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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