Family Experiences with Diagnosis of Craniosynostosis: Thematic Analysis of Online Discussion Boards.

Kaamya Varagur,John Murphy,Gary B Skolnick,Sybill D Naidoo,Sean D McEvoy,Jennifer M Strahle,Kamlesh B Patel

The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association（2023）

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摘要

Online discussion boards allow families of patients with craniosynostosis to share experiences and find community. Improving communication between surgeons, pediatricians, and families about timing of evaluation and revising online information about this condition may ameliorate some anxiety associated with this diagnosis.

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关键词

craniosynostosis, early communication, familial adjustment, counseling, parental perception

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