ArticleThe Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association2026
Information Needs of Australian Families Living with Craniosynostosis: A Qualitative Study.
Article in The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
- Psychosocial Support for Australian Families Impacted by Craniosynostosis: A Qualitative Study.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
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PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
ObjectiveCraniosynostosis 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.DesignTwenty-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.ResultsFour 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.ConclusionsNarrative 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.
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