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Confronting Craniosynostosis: Maternal Concerns, Challenges, and Coping for their Children
Ethan D Paliwoda1, Alejandro Torres2, Elma Dema3
1Albany Medical College, Albany, NY, USA.
Summary
Caregivers primarily use social media for emotional support and sharing medical information related to craniosynostosis. Patient and male perspectives were underrepresented in online discussions.
Area of Science:
- Social media analysis
- Qualitative research
- Patient-generated content
Background:
- Craniosynostosis presents unique challenges for patients and families.
- Online platforms serve as spaces for shared experiences and support.
- Understanding patient and caregiver online discourse is crucial for targeted support.
Purpose of the Study:
- To characterize the shared online experiences of individuals affected by craniosynostosis.
- To identify key themes and trends in social media content related to craniosynostosis.
- To explore how patients and caregivers utilize social media for support and information.
Main Methods:
- Qualitative thematic analysis of 700 craniosynostosis-related posts from TikTok and Instagram (2017-2024).
- Analysis focused on posts from patients and caregivers.
- Cross-sectional study design.
Main Results:
- The majority of posts (96%) were by caregivers, predominantly females (97%).
- Four predominant themes emerged: Emotional and Psychological Support (47%), Medical Information and Treatment (27%), Family and Social Dynamics (15%), and Awareness, Education, and Advocacy (12%).
- Patient and male perspectives were underrepresented.
Conclusions:
- Social media is a vital tool for caregivers, particularly mothers, seeking emotional support, health information, and community.
- Platforms facilitate sharing experiences and raising awareness about craniosynostosis.
- Physicians can leverage social media for insights, information dissemination, and patient engagement.
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