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

Caregiving and Parenting for Chronic Pediatric Diseases (85) Peer-to-Peer Support and Online Communities (652)

Published on in Vol 3, No 2 (2020): Jul-Dec

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/21694, first published .
Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis

Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis

Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis

Authors of this article:

Sarah Catrin Titgemeyer1 Author Orcid Image ;   Christian Patrick Schaaf2, 3 Author Orcid Image
Article Authors Cited by (27) Tweetations (21) Metrics

Journals

  1. Dwyer A, Zeng Z, Lee C. Validating online approaches for rare disease research using latent class mixture modeling. Orphanet Journal of Rare Diseases 2021;16(1) View
  2. Iyer A, Saade D, Bharucha-Goebel D, Foley A, Averion G, Paredes E, Gray S, Bönnemann C, Grady C, Hendriks S, Rid A. Ethical challenges for a new generation of early-phase pediatric gene therapy trials. Genetics in Medicine 2021 View
  3. Miller E, Woodward A, Flinchum G, Young J, Tabor H, Halley M. Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review. Genetics in Medicine 2021 View
  4. Kubb C, Foran H. Online Health Information Seeking for Self and Child: An Experimental Study of Parental Symptom Search. JMIR Pediatrics and Parenting 2022;5(2):e29618 View
  5. Martindale J, Goldstein J, Xixis K, Lakhotia A, Rodman A, Strauss L, Strowd R, Bass N. Be in the Digital Room Where it Happens, Part I: Tweeting & Technology for Career Development. Child Neurology Open 2022;9 View
  6. Smith S, Sichlau M, Sewall L, Smith B, Chen B, Khurana N, Rowe P. An online survey of pelvic congestion support group members regarding comorbid symptoms and syndromes. Phlebology: The Journal of Venous Disease 2022;37(8):596 View
  7. Jablonska M. Online Social Behaviors in the Context of Religiosity: A Neural-Networks-Supported Approach to Theists and Atheists. Religions 2022;13(11):1021 View
  8. Reppucci M, De La Torre L, Pickett K, Wehrli L, Nolan M, Ketzer J, Bischoff A. Social media communities for patients and families affected by congenital pediatric surgical conditions. Pediatric Surgery International 2022;38(7):1047 View
  9. Schaaf C. Genetic counseling and the role of genetic counselors in the United States. Medizinische Genetik 2021;33(1):29 View
  10. Dwyer A, Uveges M, Dockray S, Smith N. Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats. Orphanet Journal of Rare Diseases 2022;17(1) View
  11. Hausmann J, Weitzman E. The Promises and Perils of Social Media for Pediatric Rheumatology. Rheumatic Disease Clinics of North America 2022;48(1):233 View
  12. Josephy T, Loeffler D, Pam M, Godfrey E. A model for building a national, patient-driven database to track contraceptive use in women with rare diseases. Journal of the American Medical Informatics Association 2022;29(2):348 View
  13. Titgemeyer S, Schaaf C. Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns. JMIR Pediatrics and Parenting 2022;5(1):e31411 View
  14. Ashraf T, Harrison M, Irving M. Ear lobe creases: A novel phenotypic feature in KBG syndrome. American Journal of Medical Genetics Part A 2022;188(5):1618 View
  15. von der Lippe C, Neteland I, Feragen K. Children with a rare congenital genetic disorder: a systematic review of parent experiences. Orphanet Journal of Rare Diseases 2022;17(1) View
  16. Yabumoto M, Miller E, Rao A, Tabor H, Ormond K, Halley M. Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study. Journal of Medical Internet Research 2022;24(12):e42084 View
  17. Craig K, Riggan K, Rubeck S, Meredith S, Allyse M, Michie M. Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition. Journal of Community Genetics 2023;14(3):319 View
  18. Peltz-Sinvani N, Raz H, Klein P, Ish-Shalom S, Vered I, Tripto-Shkolnik L. Pregnancy- and lactation-induced osteoporosis: a social-media-based survey. BMC Pregnancy and Childbirth 2023;23(1) View
  19. Afsar A, Ghosh S, Titus R, Cheng K, Kanawala A, Kerkhof P, Day J, Gupta L. Content analysis of patient support groups related to myositis on Facebook. Clinical Rheumatology 2024;43(2):725 View
  20. Stafford‐Smith B, Sullivan J, McAllister M, Walley N, Shashi V, McConkie‐Rosell A. The book is just being written: The enduring journey of parents of children with emerging‐ ultrarare disorders. Journal of Genetic Counseling 2024 View
  21. Chang A, Huang S, Benjamin D, Schmidt J, Palmer C, Garrison N. Exploring the role of digital tools in rare disease management: An interview‐based study. Journal of Genetic Counseling 2024 View
  22. Pousette Lundgren G, Dahllöf G. Advances in clinical diagnosis and management of amelogenesis imperfecta in children and adolescents. Journal of Dentistry 2024;147:105149 View
  23. Juliebø-Jones P, Gauhar V, Keller E, Coninck V, Talyshinskii A, Sierra A, Ventimiglia E, Tzelves L, Corrales M, Emiliani E, Beisland C, Somani B. Social media and urology: The good, the bad and the ugly. Urologia Journal 2024;91(4):659 View
  24. Rao A, Yabumoto M, Ward-Lev E, Miller E, Naik H, Halley M. Health-related quality of life in patients with diverse rare diseases: An online survey. Genetics in Medicine Open 2024;2:101889 View
  25. Ben-Shlomo S, Rosenblat-Gadish D, Levin-Keini N. “Is There Something Wrong with What I Asked”? Digital Strategies for Achieving and Safeguarding Social Capital and Identity in a Facebook Support Group for Israeli Parents. Social Sciences 2024;13(10):511 View
  26. Legg D, Meisel A, Stein M, Gerischer L, Herdick M, Krüger D, Mergenthaler P, Masanneck L, Lehnerer S. Myasthenia Gravis: utilising cross-platform quantitative content analysis to uncover and validate unmet needs. Frontiers in Neurology 2024;15 View

Books/Policy Documents

  1. Jablonska M, Das S. Advanced Computing. View