Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: An Analysis of Postings

Soos, Mercedesz; Coulson, Neil S.; Davies, E. Bethan

Abstract

Background:
Online support communities have become an accessible way of gaining social, emotional, and informational support from peers and may be particularly useful for individuals with chronic conditions. To date, there have been few studies exploring the online support available for tic disorders, such as Tourette syndrome. An exploratory study looking at users’ experiences of using OSCs for TDs suggested that members used OSCs to share experiences, information, and strategies for tic management.

Objective:
To build on these preliminary findings, this study examined the provision of social support in an online community for Tourette syndrome.

Methods:
Data were collected from one publicly available online community for Tourette syndrome and tics, from its inception to December 2019 by randomly selecting 10% of posts and their corresponding comments from each year for analysis. This resulted in 510 unique posts and 3802 comments, posted from 1270 unique usernames. The data was analysed using inductive thematic analysis.

Results:
The findings of this study suggest that users utilized the online community as a multifaceted virtual place where they could: share and ask for information about tics; unload and share their feelings arising from living with Tourette syndrome; find people facing similar situations and experiences; and where they could freely share the realities of living with Tourette syndrome.

Conclusions:
The results complement the findings from a preliminary study and suggest that OSCs have a potentially valuable role as a mechanism for sharing and gaining information on illness experiences from similar peers experiencing tics, and can promote self-management of tics. Limitations and recommendations for future research are discussed.

Citation

Soos, M., Coulson, N. S., & Davies, E. B. (2022). Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: An Analysis of Postings. Journal of Medical Internet Research, 24(10), Article e34403. https://doi.org/10.2196/34403

• Journal Article Type: Article
• Acceptance Date: Mar 14, 2022
• Online Publication Date: Oct 4, 2022
• Publication Date: Oct 4, 2022
• Deposit Date: Mar 22, 2022
• Publicly Available Date: Oct 4, 2022
• Journal: Journal of Medical Internet Research
• Electronic ISSN: 1438-8871
• Publisher: JMIR Publications
• Peer Reviewed: Peer Reviewed
• Volume: 24
• Issue: 10
• Article Number: e34403
• DOI: https://doi.org/10.2196/34403
• Public URL: https://nottingham-repository.worktribe.com/output/7643620
• Publisher URL: https://www.jmir.org/2022/10/e34403