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

Perkins, Victoria; Coulson, Neil S.; Davies, E. Bethan

Abstract

Background:

People living with a tic disorder – such as Tourette syndrome (TS) – experience many negative psychological and social challenges arising from chronic tics, such as stigmatisation 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 tic disorders, and by others (e.g. parents, caregivers) supporting a person with TS/tic disorder.

Objective:

The present study aimed to explore users’ experiences of participation in online support communities for TS and tic disorders.

Methods:

In total, 90 respondents (aged 13-62 yrs; 62% female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and tic disorders. Respondents were people living with TS/tic disorder themselves (n=68), and/or supportive others of someone with TS/tic disorder (e.g. parent, sibling, spouse; n=22). 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 analysed using thematic analysis.

Results:

Seven overarching themes captured experiences of using online support communities for TS/tic disorders. 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 wellbeing. Online communities helped provided a space where people with TS/tic disorders could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of tic disorders were main disadvantages arising from using online support communities, alongside conflict arising within online communities.

Conclusions:

The findings suggest that online support communities appear offer valuable informational and emotional support to those living with TS/tic disorder 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 longstanding social isolation and aid self-reported improvements in psychosocial wellbeing. 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.

Citation

Perkins, V., Coulson, N. S., & Davies, E. B. (2020). Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users' Experiences. Journal of Medical Internet Research, 22(11), Article e18099. https://doi.org/10.2196/18099

• Journal Article Type: Article
• Acceptance Date: May 14, 2020
• Online Publication Date: Nov 3, 2020
• Publication Date: Nov 3, 2020
• Deposit Date: May 27, 2020
• Publicly Available Date: Nov 3, 2020
• Journal: Journal of medical Internet research
• Electronic ISSN: 1438-8871
• Publisher: JMIR Publications
• Peer Reviewed: Peer Reviewed
• Volume: 22
• Issue: 11
• Article Number: e18099
• DOI: https://doi.org/10.2196/18099
• Public URL: https://nottingham-repository.worktribe.com/output/4442475
• Publisher URL: https://www.jmir.org/2020/11/e18099/
• Related Public URLs: https://preprints.jmir.org/preprint/18099/accepted