The study objective was to characterize shared online experiences surrounding craniosynostosis.
Methods
Isolated and syndromic craniosynostosis-related consecutive posts (N = 700) made by patients and caregivers were extracted from TikTok and Instagram between 2017-2024. A cross-sectional qualitative analysis following guidelines for practical thematic analysis was performed.
Results
The majority of posts were by caregivers (96%) and by females (97%). Forty categorical subthemes from social media posts were synthesized into 4 predominant themes. Overarching thematic trends included Emotional and Psychological Support (47%), Medical Information and Treatment (27%), Family and Social Dynamics (15%), and Awareness, Education, and Advocacy (12%).
Conclusion
Social media is used by caregivers, primarily mothers, for emotional support, processing health information, sharing experiences, raising awareness, and celebrating “cranioversaries.” Male and patient perspectives were underrepresented. Physicians may use social media to gain insights, disseminate quality health information, and connect with patients.
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