Psychosocial Support for Australian Families Impacted by Craniosynostosis: A Qualitative Study.

Abstract

ObjectiveFamilies impacted by a craniofacial condition have reported mixed experiences of psychosocial support; however, the experience of Australian parents is not yet known. The current study therefore explores the psychosocial experiences, and needs, of Australian parents whose child has been diagnosed with craniosynostosis.DesignQualitative data were obtained from 21 online narrative interviews with parents of children with non-syndromic and syndromic craniosynostosis. Interviews were transcribed and reflexive thematic analysis was used to generate themes.ResultsFour themes were developed: (1) communication and trust in clinical care; (2) challenges in health system processes and communication; (3) challenges and strengths of family support networks; and (4) absence of psychological support in the clinical journey.ConclusionsThere is a lack of psychosocial support provided to families living with craniosynostosis in Australia. Parents have requested that psychological assistance and related supports be readily provided as an aspect of standard, family-centered care.