This paper is in the following e-collection/theme issue:

Peer-to-Peer Support and Online Communities (797)

Published on in Vol 22, No 11 (2020): November

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/18099, first published .
Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences

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

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

Authors of this article:

Victoria Perkins1 Author Orcid Image ;   Neil S Coulson1 Author Orcid Image ;   E Bethan Davies2, 3 Author Orcid Image
Article Authors Cited by (27) Tweetations (16) Metrics

Journals

  1. Conelea C, Bervoets J, Bethan Davies E, Varner K, Malli M, Jones D, Beljaars D, Nash B, Capriotti M. A call for caution: ‘stop that’ sentiments threaten tic research, healthcare and advocacy. Brain 2022;145(4):e18 View
  2. Atkinson-Clement C, Duflot M, Lastennet E, Patsalides L, Wasserman E, Sartoris T, Tarrano C, Rosso C, Burbaud P, Deniau E, Czernecki V, Roze E, Hartmann A, Worbe Y. How does Tourette syndrome impact adolescents’ daily living? A text mining study. European Child & Adolescent Psychiatry 2023;32(12):2623 View
  3. Frey J, Black K, Malaty I. TikTok Tourette’s: Are We Witnessing a Rise in Functional Tic-Like Behavior Driven by Adolescent Social Media Use?. Psychology Research and Behavior Management 2022;Volume 15:3575 View
  4. Hartmann A, Atkinson-Clement C, Depienne C, Black K. Tourette syndrome research highlights from 2020. F1000Research 2022;11:45 View
  5. Bizzotto N, Morlino S, Schulz P. Misinformation in Italian Online Mental Health Communities During the COVID-19 Pandemic: Protocol for a Content Analysis Study. JMIR Research Protocols 2022;11(5):e35347 View
  6. Soós M, Coulson N, Davies E. Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings. Journal of Medical Internet Research 2022;24(10):e34403 View
  7. Frey J, Malaty I. Tourette Syndrome Treatment Updates: a Review and Discussion of the Current and Upcoming Literature. Current Neurology and Neuroscience Reports 2022;22(2):123 View
  8. Ghate R, Hossain R, Lewis S, Richter M, Sinyor M. Characterizing the content, messaging, and tone of trichotillomania on YouTube: A content analysis. Journal of Psychiatric Research 2022;151:150 View
  9. Hartmann A, Atkinson-Clement C, Depienne C, Black K. Tourette syndrome research highlights from 2020. F1000Research 2022;11:45 View
  10. Conway M, Vuong T, Hart K, Rohrwasser A, Eilbeck K. Pain points in parents’ interactions with newborn screening systems: a qualitative study. BMC Pediatrics 2022;22(1) View
  11. Kocher A, Simon M, Dwyer A, Blatter C, Bogdanovic J, Künzler-Heule P, Villiger P, Dan D, Distler O, Walker U, Nicca D. Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study. RMD Open 2021;7(3):e001783 View
  12. Taylor E, Anderson S, Davies E. “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 2022;13 View
  13. Woods D, Himle M, Stiede J, Pitts B. Behavioral Interventions for Children and Adults with Tic Disorder. Annual Review of Clinical Psychology 2023;19(1):233 View
  14. Neely S, Hao F. Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19–Infected Social Media Users: Survey of US-Based Adults. JMIR Formative Research 2023;7:e48581 View
  15. Shortland D, Fazil Q, Lavis A, Hallett N. A systematic scoping review of how people with ME/CFS use the internet. Fatigue: Biomedicine, Health & Behavior 2024;12(2):142 View
  16. Shortland D, Fazil Q, Hallett N, Lavis A. Protocol for a scoping review of how people with ME/CFS use the internet. BMJ Open 2024;14(1):e076904 View
  17. Coulson N, Talbot C. Examining support marshalling within an asynchronous online peer support forum for individuals affected by dementia. Journal of Health Psychology 2025;30(8):1795 View
  18. Carik B, Ping K, Ding X, Rho E. Exploring Large Language Models Through a Neurodivergent Lens: Use, Challenges, Community-Driven Workarounds, and Concerns. Proceedings of the ACM on Human-Computer Interaction 2025;9(1):1 View
  19. Alharthi M. A narrative review of Phase III and IV clinical trials for the pharmacological treatment of Tourette’s syndrome in children, adults, and older adults. Medicine 2025;104(23):e42760 View
  20. Adekunle T, Foote J, Adekunle T, TeBlunthuis N, Nelson L. Exploring Conceptualizations of COVID-19 Risk in Ideologically Distinct Online Communities: A Computational Grounded Theory Analysis. Journal of Medical Internet Research 2025;27:e67968 View
  21. Rattu N, Hall S, Hall C, Murphy T, Kilgariff J, James N, McNally E, Jeayes A, Khan K, Rimmer S, Thomson L, Groom M. 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 2025;28(1):e301599 View
  22. Ford E, Coulson N, Davies E. Exploring Empowerment in Online Support Communities for People Living With Tic Disorders and Tourette Syndrome: Qualitative Survey Study of User Experiences. JMIR Formative Research 2025;9:e66912 View
  23. Vanaken G, Mulkers A, Segers J, Hens K, Steyaert J, Bervoets J. Can the Neurodiversity Movement Make Space for Tourette's? Dialoguing Lived Experiences and Theory. Neurodiversity 2025;3 View
  24. Harmon S, Reese H. The Role of Digital Tools in Meeting the Needs of Adults with Tourette Syndrome: A National Web-Based Survey (Preprint). JMIR Formative Research 2025 View

Books/Policy Documents

  1. Hamlyn A, Farahmand P. Teens, Screens, and Social Connection. View
  2. Luhalima T, Mulovhedzi S, Thuketana N. Handbook of Research on Shifting Paradigms of Disabilities in the Schooling System. View
  3. Talbot C, Dunne T. Handbook of Social Media Use Online Relationships, Security, Privacy, and Society, Volume 2. View