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Content Analysis of Social Media Support Groups for Craniosynostosis
Michael S. Hu, MD, MPH, MS; Madeleine K. Bruce, BA; Erin E. Anstadt, MD, Fady P. Marji, MD; Aaron Foglio, MD; Tarek Elgendy, MD; Miles J. Pfaff, MD, MHS; Joseph E. Losee, MD, Jesse A. Goldstein, MD
University of Pittsburgh Medical Center
2021-02-15
Presenter: Mike Hu
Affidavit:
Vu Nguyen
Director Name: Vu Nguyen
Author Category: Resident Plastic Surgery
Presentation Category: Clinical
Abstract Category: Craniomaxillofacial
Introduction: Caregivers of patients with craniosynostosis 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 craniosynostosis support group to assess how providers can improve outreach, education, and care for their patients.
Methods: From October 1, 2018 to January 1, 2019, 1000 posts from "Cranio Kids – Craniosynostosis Support" were analyzed to identify the type of information shared. An additional 100 posts from January 1, 2019 to February 28, 2019 were characterized focusing on "reactions" and comments from members.
Results: Posts were grouped into two broad categories: questions (n=517) and information sharing (n=483). Sub-groups of questions included experience (n=213), seeking advice (n=197), regarding a diagnosis (n=41), surgeon inquiry (n=34), requesting support (n=20), requesting pictures (n=6), and others (n=6). Information sharing consisted of medical updates (n=269) and photos (n=148). Interestingly, only 2 posts shared information regarding surgeons. The 100 posts analyzed for responses received on average 64.74 "reactions" and 24.48 comments. Of the comments analyzed (n=454), 81 were questions, 244 were comments without any medical/anecdotal basis, 157 were anecdotal comments, and 18 were comments containing sound medical advice.
Conclusion: This is the first study to characterize the content of social media support group posts. There is value to 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.
