A Booklet to Promote Psychological Health in New Families Affected by Craniosynostosis.

Abstract

Recent research indicates that parents of children with craniosynostosis may be at risk of emotional distress. Yet, parents may not be accessing the support they need to cope with common challenges. The aim of this project was to develop a research-informed booklet to promote psychological health in new families, and to assess acceptability of the booklet within the craniosynostosis community. The first draft was designed in close collaboration with leading UK charity Headlines Craniofacial Support 5 parent representatives, and 3 specialist clinical psychologists via online focus groups. The draft booklet, attached to an online acceptability survey, was distributed to a broader group of parents and multidisciplinary specialists working in craniofacial teams in England for feedback. A total of 44 complete responses to the online acceptability survey were received. Acceptability (measured by the number of respondents who would recommend the booklet) was 100%. All respondents reported they "agreed" or "strongly agreed" with the UK-wide distribution of the booklet. Evidence for psychological intervention in the craniofacial field remains scarce, and specialist teams may be under-resourced to effectively screen and support parents. It is hoped this booklet will begin to address the gap in psychological support for new families affected by craniosynostosis.