Lived experience as guidance: A qualitative study of parental advice for craniosynostosis

Craniosynostosis occurs when one or more cranial sutures fuse prematurely and can present complex medical, psychosocial, and caregiving challenges for affected families. Prior research documents parents’ experiences of navigating diagnosis and treatment, highlighting value in connecting with other families to share insights and support. However, little is known about specific practical and emotional guidance that parents themselves would offer to others facing similar circumstances. To address this gap, we used reflexive thematic analysis to examine pre-existing qualitative interview data from 22 parents. Six themes were generated: Stay Informed and Make Informed Decisions ; Prepare for the Journey: Practically and Emotionally ; Build a Support Network ; Advocate with Confidence ; Care for Yourself Along the Way ; and Find Strength in Positivity and Growth . Findings identify condition-specific, actionable advice that complements clinical guidance. They point to persistent gaps in routine care, including both practical information and psychosocial support, and show how peer insight reduces uncertainty. Embedding parent advice in family-centred care from the outset, via structured resources and facilitated peer support, can deliver timely, experience-based guidance for decision-making, preparation, advocacy, and self-care. This, in turn, strengthens parents’ confidence and resilience across their craniosynostosis journey.