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Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings
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 disorder...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9579925/ https://www.ncbi.nlm.nih.gov/pubmed/36194454 http://dx.doi.org/10.2196/34403 |
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author | Soós, Mercédesz Judit Coulson, Neil S Davies, E Bethan |
author_facet | Soós, Mercédesz Judit Coulson, Neil S Davies, E Bethan |
author_sort | Soós, Mercédesz Judit |
collection | PubMed |
description | 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 with using online support communities for tic disorders suggested that members used such communities 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 support 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 were analyzed 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 freely share the realities of living with Tourette syndrome. CONCLUSIONS: The results complement the findings from a preliminary study and suggest that online support communities 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. |
format | Online Article Text |
id | pubmed-9579925 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-95799252022-10-20 Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings Soós, Mercédesz Judit Coulson, Neil S Davies, E Bethan J Med Internet Res Original Paper 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 with using online support communities for tic disorders suggested that members used such communities 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 support 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 were analyzed 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 freely share the realities of living with Tourette syndrome. CONCLUSIONS: The results complement the findings from a preliminary study and suggest that online support communities 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. JMIR Publications 2022-10-04 /pmc/articles/PMC9579925/ /pubmed/36194454 http://dx.doi.org/10.2196/34403 Text en ©Mercédesz Judit Soós, Neil S Coulson, E Bethan Davies. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 04.10.2022. 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 https://www.jmir.org/, as well as this copyright and license information must be included. |
spellingShingle | Original Paper Soós, Mercédesz Judit Coulson, Neil S Davies, E Bethan Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings |
title | Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings |
title_full | Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings |
title_fullStr | Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings |
title_full_unstemmed | Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings |
title_short | Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings |
title_sort | exploring social support in an online support community for tourette syndrome and tic disorders: analysis of postings |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9579925/ https://www.ncbi.nlm.nih.gov/pubmed/36194454 http://dx.doi.org/10.2196/34403 |
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