Surgery for Craniosynostosis: Developing a Psychosocial Booklet for Families

Abstract

Parents of children with craniosynostosis may experience psychological distress, particularly during intensive periods of treatment. Yet, recent research indicates parents may not be accessing the support they need to cope with common challenges. The aim was to develop an evidence-based booklet to promote psychological health in families undergoing surgery and to assess the acceptability of the booklet among the craniosynostosis community. Researchers collaborated with UK charity Headlines Craniofacial Support, 5 parent representatives, and 2 specialist clinical psychologists to develop the booklet based on data obtained from online focus groups, individual interviews, and written accounts. The draft booklet was attached to an online acceptability survey and distributed to a broader group of parents and multidisciplinary craniofacial specialists for feedback. A total of 52 complete responses to the online acceptability survey were received, and acceptability (measured by the number of respondents who would recommend the booklet) was 100%. All respondents supported 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 families. It is hoped this booklet can begin to address the gap in psychological support for families affected by craniosynostosis.