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

Objective: Apply thematic analysis of online discussion boards to characterize families’ experiences and concerns regarding craniosynostosis diagnoses to aid physicians in tailoring care to families. Design: Grounded theory-based qualitative analysis. Setting: Discussion boards related to craniosynostosis identified via Google and Yahoo. Patients/Participants: Posts about craniosynostosis between 2017–2022. Interventions: Thematic analysis was performed using three rounds of coding. Post features including author type and use of technical language were examined. Main Outcome Measure: Overarching themes emerging from analysis of posts, with forums analyzed until sufficient thematic repetition was observed. Results: 366 posts from 4 websites by 290 unique users were included. Parents of patients with craniosynostosis wrote 59% of posts while patients wrote 4%. Five selective codes were identified: 1) Building Community, 2) Diagnosis/Evaluation, 3) Treatment, 4) Outcomes, and 5) Emotional Concerns. Building Community was the most assigned code (85% of posts). 71% of parents’ posts expressing emotional concerns expressed negative emotions, commonly regarding anxiety about diagnosis (71%), frustration about doctors’ responses (21%), or negative reactions to online search results (17%). 88% of patients’ posts expressed positive emotions, discussing positive long-term outcomes. Concerns that may guide physicians included anxiety about delayed diagnosis, difficulty distinguishing postpartum head shape changes from craniosynostosis, and difficulty finding a care team. Conclusions: 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.