Supporting Families of Children With Craniosynostosis: A Qualitative Exploration of Parental Usage of Online Forums

Elisha L. Rea, School of Psychology, University of Adelaide, Adelaide, South Australia, 5005, AustraliaFollow
Rachel M. Roberts, School of Psychology, University of Adelaide, Adelaide, South Australia, 5005, Australia
Amanda J. Osborn, School of Psychology, University of Adelaide, Adelaide, South Australia, 5005, Australia

Abstract

Objective: Craniosynostosis is characterised by the early fusion of cranial sutures, resulting in an abnormal head shape. This study examines the psychosocial impact of a child's craniosynostosis diagnosis on families, by analysing online forum discussions. While surgery is often needed to address appearance-related and neuropsychological concerns, parents face challenges navigating their child's diagnosis. Many seek support through online forums, yet research on their experiences remains limited. This study aims to understand parental needs and experiences by analysing forum discussions. Method: Online forums were analysed using reflexive thematic analysis. Significant features of the data were systematically coded and themes reflecting patterns of shared meaning were developed. Results: After applying study criterion, an online discussion board and public social media group were analysed. Seventy-eight threads (78 opening posts + 675 responses), totalling 753 posts were extracted and four themes developed: Emotional Support, Seeking Information to Guide Decision-Making, Challenges of Diagnosing Craniosynostosis, and Navigating Treatment Concerns. Online forums appeared to provide a safe environment for parents to exchange emotional and informational support. Parents used online support to guide their own decision-making, particularly during the diagnosis and treatment of craniosynostosis. Conclusions: This study underscores the critical role of online forums in supporting parents of children with craniosynostosis, offering valuable insights into their psychosocial needs and experiences. By amplifying the voices and experiences shared in these digital spaces, this research contributes to a deeper understanding of how online communities facilitate coping strategies and support networks among families facing craniosynostosis.

Recommended Citation

Rea E, Roberts R, Osborn A. Supporting Families of Children With Craniosynostosis: A Qualitative Exploration of Parental Usage of Online Forums. Patient Experience Journal. 2026; 13(1):229-239. doi: 10.35680/2372-0247.2070.