Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Oct 26, 2021
Date Accepted: Mar 13, 2022
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Exploring Social Support in an Online Community for Tourette Syndrome and Tic Disorders: An Analysis of Postings
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. Clinical Trial: n/a
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Copyright
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