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Characterization of a Social Media Support Group for Craniosynostosis
Michael S. Hu, MD, MPH, MS, Erin E. Anstadt, MD, Fady P. Marji, MD, Tarek Elgendy, MD, Aaron Foglio, BS, Lucas A. Dvoracek, MD, Francesco M. Egro, MBChB, MSc, MRCS, Joseph E. Losee, MD, Jesse A. Goldstein, MD
University of Pittsburgh
2020-02-15
Presenter: Michael Hu
Affidavit:
This work represents that performed primarily by the presenter.
Director Name: Vu T. Nguyen
Author Category: Resident Plastic Surgery
Presentation Category: Clinical
Abstract Category: Craniomaxillofacial
The parents and caregivers of patients with craniofacial disorders increasingly rely on social media for information and support, yet little is known in the surgical community about the information shared within these groups. We sought to characterize the content of posts in the largest Facebook support group for craniosynostosis to assess utility for providers.
The Facebook group "Cranio Kids – Craniosynostosis Support" is the largest support group for craniosynostosis with over 17,400 members. We analyzed 1000 posts in this closed group from October 1, 2018 to January 1, 2019. Posts were categorized to identify the type of information shared within the group. An additional 100 posts from January 1, 2019 to February 28, 2019 were characterized focusing on the "reactions" and comments from the support group.
The 1000 examined posts were grouped into two broad categories: questions (n=517) and sharing of information (n=483). Several broad post themes were identified. The 100 posts analyzed for response from the support group received on average 64.74 "reactions" and 24.48 comments (n=100). Of the comments analyzed, 81 were questions, 244 were simple replies lacking medical or anecdotal content, 157 were anecdotal comments, and 18 were comments offering sound medical advice (n=454).
This is the first study to characterize the content of social media support group posts. There is value to craniofacial surgeons in understanding the content of social media support group posts in order to identify general patient concerns, follow up on their outcomes, and identify areas for quality improvement.
