Deciding on surgery: supporting parents of infants with craniosynostosis

Families face a difficult decision when choosing whether or not to have surgery for their infant with isolated craniosynostosis. While the skull deformity may not affect the child's physical health, growth, or development, it may have psychosocial impacts on a child's social-emotional development, self-esteem, and interpersonal interactions. Parents are challenged to balance surgical risks with potentially positive effects on their child's psychosocial health. The purpose of this research study was to explore parental decision-making related to surgery for isolated craniosynostosis, and to identify strategies that facilitate their decision-making. A thematic content analysis of focus group interview data revealed four themes that encapsulated the process of parental decision-making. The decision for some parents was agonizing. However, others found the decision relatively straightforward. In all cases, parents spent time thinking and gathering information. Certain critical events helped parents make their decision. Parents identified a number of strategies that would be helpful to the decision-making process.