Centre for Appearance Research, University of the West of England, Bristol.
Alder Hey Children's NHS Foundation Trust, Liverpool.
J Craniofac Surg. 2022 Sep 1;33(6):1670-1673. doi: 10.1097/SCS.0000000000008454. Epub 2021 Dec 30.
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.
最近的研究表明，颅缝早闭患儿的父母可能有情绪困扰的风险。然而，父母可能无法获得他们所需的支持来应对常见的挑战。本项目的目的是开发一本基于研究的小册子，以促进新家庭的心理健康，并评估该小册子在颅缝早闭群体中的可接受性。初稿是与英国领先的慈善机构 Headlines Craniofacial Support 的 5 位家长代表和 3 位专门的临床心理学家通过在线焦点小组密切合作设计的。附有在线可接受性调查的初稿分发给了英格兰颅面团队中更多的家长和多学科专家，以征求反馈意见。共收到了对在线可接受性调查的 44 份完整回复。可接受性（通过愿意推荐小册子的受访者数量来衡量）为 100%。所有受访者均表示他们“同意”或“强烈同意”在英国范围内分发该小册子。颅面领域的心理干预证据仍然很少，专门的团队可能资源不足，无法有效地筛查和支持家长。希望这本小册子将开始为受颅缝早闭影响的新家庭提供心理支持方面的空白。
