Diagnostic and Surgical Experiences of Australian Parents Navigating Their Child’s Craniosynostosis: A Reflexive Thematic Analysis

Nonsyndromic craniosynostosis is a congenital condition causing abnormal skull shape and growth, that is typically surgically treated in the first year of life. Parents of children diagnosed with craniosynostosis endure parental stress and complex emotional responses to their child's diagnosis and treatment. This study examines the psychosocial experiences of parents and their support needs across the diagnostic and perioperative period. Semi-structured interviews with 17 Australian families who had a child diagnosed with nonsyndromic craniosynostosis were undertaken. Reflexive thematic analysis, conducted with an inductive and social-constructionist epistemological approach, generated 5 themes. These themes were: (1) the journey begins; (2) the advocate; (3) waiting for surgery; (4) traveling on the "right" path; and (5) the "different" child. Challenges faced by parents across their journey were multi-faceted and disproportionately impacted mothers. Health care professionals must be responsive to parent support needs and attend to the provision of psychological support for families affected by appearance-altering surgery. Findings highlighted the value of interinstitutional collaboration between Australian craniofacial units, and the importance of family-oriented approaches to care.