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

Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1570)

Published on in Vol 16, No 12 (2014): December

Analysis of a Parent-Initiated Social Media Campaign for Hirschsprung’s Disease

Analysis of a Parent-Initiated Social Media Campaign for Hirschsprung’s Disease

Analysis of a Parent-Initiated Social Media Campaign for Hirschsprung’s Disease

Authors of this article:

Kristy Wittmeier1, 2, 3 Author Orcid Image ;   Cindy Holland4 Author Orcid Image ;   Kendall Hobbs-Murison3, 4, 5 Author Orcid Image ;   Elizabeth Crawford6 Author Orcid Image ;   Chad Beauchamp7 Author Orcid Image ;   Brodie Milne7 Author Orcid Image ;   Melanie Morris2, 3, 5 Author Orcid Image ;   Richard Keijzer2, 3, 5 Author Orcid Image
Article Authors Cited by (21) Tweetations (37) Metrics

Journals

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  3. Wittmeier K, Hobbs-Murison K, Holland C, Crawford E, Loewen H, Morris M, Lum Min S, Abou-Setta A, Keijzer R. Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review. Journal of Medical Internet Research 2018;20(12):e297 View
  4. De Castro M, Turner C, Kirmse B, Ferreira C. Practical recommendations for the transition to adulthood for the adolescent with a genetic diagnosis. Special emphasis on inborn errors of metabolism. Translational Science of Rare Diseases 2020;4(3-4):159 View
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  7. Bright K, Ginn C, Keys E, Brockway M, Tomfohr-Madsen L, Doane S, Benzies K. Study Protocol: Determining Research Priorities of Young Albertan Families (The Family Research Agenda Initiative Setting Project—FRAISE)—Participatory Action Research. Frontiers in Public Health 2018;6 View
  8. Gordon S. Prospects for case-based research on social media. Journal of Information Technology Case and Application Research 2016;18(4):193 View
  9. Fry J, Frader J. “We want to do everything”: how parents represent their experiences with maternal–fetal surgery online. Journal of Perinatology 2018;38(3):226 View
  10. Jacobs R, Boyd L, Brennan K, Sinha C, Giuliani S. The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey. Journal of Pediatric Surgery 2016;51(11):1766 View
  11. DeHoff B, Staten L, Rodgers R, Denne S. The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review. Journal of Medical Internet Research 2016;18(12):e333 View
  12. Titgemeyer S, Schaaf C. Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis. JMIR Pediatrics and Parenting 2020;3(2):e21694 View
  13. 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
  14. Faus M, Alonso F, Javadinejad A, Useche S. Are social networks effective in promoting healthy behaviors? A systematic review of evaluations of public health campaigns broadcast on Twitter. Frontiers in Public Health 2022;10 View
  15. 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
  16. Long J, Best S, Nic Giolla Easpaig B, Hatem S, Fehlberg Z, Christodoulou J, Braithwaite J. Needs of people with rare diseases that can be supported by electronic resources: a scoping review. BMJ Open 2022;12(9):e060394 View
  17. 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
  18. Geisthoff U, Hölzle F, Stuck B, Jackowski J, Hand Goetz C, Grabowski C, Droege F, Pereira P. Nationwide Awareness Campaign and Call for Dental Screening for Hereditary Hemorrhagic Telangiectasia in Germany. International Journal of Dentistry 2023;2023:1 View
  19. Engwerda A, Frentz B, Rraku E, de Souza N, Swertz M, Plantinga M, Kerstjens-Frederikse W, Ranchor A, van Ravenswaaij-Arts C. Parent-reported phenotype data on chromosome 6 aberrations collected via an online questionnaire: data consistency and data availability. Orphanet Journal of Rare Diseases 2023;18(1) View
  20. Kerns M, O’Leary S, Cataldi J. Activities, Motivations and Demographics of Provaccine Advocates. Pediatric Infectious Disease Journal 2024;43(3):286 View