"When I was Younger, My Story Belonged to Everyone Else": Co-production of Resources for Adults Living with Craniosynostosis.

IF 1.1 4区医学 Q2 Dentistry

Cleft Palate-Craniofacial Journal Pub Date : 2024-03-18 DOI:10.1177/10556656241236580

Nicola M Stock, Bruna Costa, William Bannister, Charlotte Ashby, Nammie Matthews, Louise Hebden, Laura Melles, Zoe Hilton-Webb, Sally Smith, Kristian Kane, Lewis Carter, Anna Kearney, Katie Piggott, Charlotte Russell, Karen Wilkinson-Bell

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引用次数: 0

Abstract

Objective: Despite growing recognition that congenital craniofacial conditions have lifelong implications, psychological support for adults is currently lacking. The aim of this project was to produce a series of short films about living with craniosynostosis in adulthood, alongside a psychoeducational booklet.

Design: The resources were developed using multiple focus groups and meetings attended by researchers, patient representatives, a leading charitable organisation, an award-winning film production company, clinicians, and other experts in the field.

Results: An online mixed-methods survey was developed based on prior work to request feedback on the acceptability and utility of the resources from the craniosynostosis community. While data collection to evaluate the resources is ongoing, preliminary results (n = 36) highlight an acceptability rating of 100%.

Conclusions: The resources developed represent a step forward in addressing the unmet information and support needs of adults with craniosynostosis and highlight the benefits of co-production in research.

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"当我年轻时，我的故事属于所有人"：为患有颅骨发育不良症的成年人共同制作资源。

目的：尽管越来越多的人认识到先天性颅颌面疾病会影响人的一生，但目前却缺乏对成年人的心理支持。本项目旨在制作一系列关于成年后颅脑发育不良患者生活的短片，以及一本心理教育手册：设计：这些资源是通过多个焦点小组和会议开发出来的，与会者包括研究人员、患者代表、一家领先的慈善组织、一家获奖的电影制作公司、临床医生以及该领域的其他专家：结果：在先前工作的基础上开发了一个在线混合方法调查，以征求颅骨发育不良社区对资源可接受性和实用性的反馈意见。虽然评估资源的数据收集工作仍在进行中，但初步结果（n = 36）显示可接受性评级为 100%：所开发的资源代表着在满足颅骨发育不良成人患者未得到满足的信息和支持需求方面向前迈出了一步，并凸显了共同生产在研究中的益处。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Cleft Palate-Craniofacial Journal DENTISTRY, ORAL SURGERY & MEDICINE-SURGERY

CiteScore

2.20

自引率

36.40%

发文量

审稿时长

4-8 weeks

期刊介绍： The Cleft Palate-Craniofacial Journal (CPCJ) is the premiere peer-reviewed, interdisciplinary, international journal dedicated to current research on etiology, prevention, diagnosis, and treatment in all areas pertaining to craniofacial anomalies. CPCJ reports on basic science and clinical research aimed at better elucidating the pathogenesis, pathology, and optimal methods of treatment of cleft and craniofacial anomalies. The journal strives to foster communication and cooperation among professionals from all specialties.

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