Information Needs of Australian Families Living with Craniosynostosis: A Qualitative Study.

Objective: Craniosynostosis is considered a lifelong condition, yet relatively little focus has been directed toward ascertaining the information needs of Australian families. Thus, the aim of this study was to explore the information needs of Australian parents whose child has been diagnosed with nonsyndromic or syndromic craniosynostosis.

Design: Twenty-one online narrative interviews were conducted with parents of children with craniosynostosis (aged between 4 months and 20 years). Transcripts were analyzed using reflexive thematic analysis and themes were developed.

Results: Four themes were generated: (1) lots of information …. and quickly!; (2) the practicalities of hospital and surgery; (3) guidance on how to talk about my child's condition; and (4) the path is rarely clear. Parents of children with craniosynostosis discussed a range of information that was provided to them, or they would have liked to have been given, following their child's diagnosis. Parents noted that insufficient information was provided by the health system and that they faced considerable difficulties accessing credible information about their child's condition, relevant location-specific surgical options, the treatment process and outcomes.

Conclusions: Narrative interviews provided detailed insight into the information needs of Australian parents of children diagnosed with craniosynostosis. Although parents were frequently challenged by a lack of information detailing their specific treatment and support options, suggestions relevant to craniofacial providers globally were offered. Further work is now needed to develop and provide these information resources in a timely and easily accessible way.