Stock Nicola M, Pearse Lucy, Murfett Lucy, Pearse Kris, Kearney Anna, Horton Jo, Hilton Caroline, Wilkinson-Bell Karen
Centre for Appearance Research, University of the West of England, Bristol.
Headlines Craniofacial Support, St Albans.
J Craniofac Surg. 2025;36(1):26-29. doi: 10.1097/SCS.0000000000010422. Epub 2024 Jul 15.
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.
患有颅缝早闭症儿童的家长可能会经历心理困扰，尤其是在强化治疗期间。然而，最近的研究表明，家长可能无法获得应对常见挑战所需的支持。目的是编写一本基于证据的手册，以促进接受手术治疗家庭的心理健康，并评估该手册在颅缝早闭症群体中的可接受性。研究人员与英国慈善机构“头条颅面支持”、5名家长代表和2名专业临床心理学家合作，根据从在线焦点小组、个人访谈和书面记录中获得的数据编写手册。手册草案附在一份在线可接受性调查问卷上，并分发给更广泛的家长群体和多学科颅面专家以征求反馈意见。共收到52份对在线可接受性调查问卷的完整回复，可接受性（以建议推荐该手册的受访者数量衡量）为100%。所有受访者都支持在全英国范围内分发该手册。颅面领域心理干预的证据仍然很少，而且专业团队可能资源不足，无法有效地筛查和支持家庭。希望这本手册能够开始填补为受颅缝早闭症影响家庭提供心理支持方面的空白。
