Ardouin Kenny, Davis Nicky, Stock Nicola Marie
Cleft Lip and Palate Association, The Green House, London, United Kingdom.
Centre for Appearance Research, University of the West of England, Bristol, United Kingdom.
Cleft Palate Craniofac J. 2022 Apr;59(4_suppl2):S48-S56. doi: 10.1177/10556656211025415. Epub 2021 Jun 29.
The largest group of people living with repaired cleft lip and/or palate (CL/P) are adults. Previous research has identified unmet treatment and psychosocial needs, yet few interventions exist. This article outlines 3 interventions developed by the Cleft Lip and Palate Association as part of its 3-year community-based Adult Services Programme; an Adults Conference, a series of panel discussions ("Cleft Talk") streamed in podcast/video format, and a Leaver's Pack of resources for adults wishing to return to cleft care.
Feedback from attendees of the Adults Conferences (2018-2019) was collected using specifically developed evaluation forms. Streaming metrics and social media interactions were extracted for Cleft Talk panel discussions (2019-2020). The Leaver's Pack was piloted in 2020, using an online evaluation form. Specialist health professionals were invited to provide feedback or participate in a one-to-one interview regarding their perceived impact of the program.
All 3 interventions across the different modalities received support from participating adults, demonstrating potential to meet adults' needs across the life span. Health professionals also offered support for the program, viewing the interventions as a valuable adjunct to formal medical CL/P services.
This exploratory evaluation indicates that peer- and community-led interventions, in combination with ongoing access to specialist medical care, can have a range of positive impacts for adults with CL/P. There is scope for similar initiatives to be developed internationally and for individuals with other craniofacial conditions. Not-for-profit organizations are encouraged to routinely evaluate their interventions to create a stronger evidence base for their valuable work.
接受过唇腭裂修复手术的人群中，成年人数量最多。以往研究已明确存在未得到满足的治疗及心理社会需求，但相关干预措施却很少。本文概述了唇腭裂协会开展的三项干预措施，作为其为期三年的社区成人服务项目的一部分；一次成人会议、一系列以播客/视频形式播放的小组讨论（“腭裂访谈”），以及为希望重新接受腭裂护理的成年人提供的一套资源包。
使用专门设计的评估表收集成人会议（2018 - 2019年）参会者的反馈。提取“腭裂访谈”小组讨论（2019 - 2020年）的播放指标和社交媒体互动情况。2020年对资源包进行了试点，采用在线评估表。邀请专业健康专家就他们对该项目的感知影响提供反馈或参与一对一访谈。
所有三种不同形式的干预措施都得到了参与的成年人的支持，表明有潜力满足成年人一生的需求。健康专家也对该项目表示支持，认为这些干预措施是正规唇腭裂医疗服务的宝贵补充。
这项探索性评估表明，同伴和社区主导的干预措施，结合持续获得专科医疗护理，可为唇腭裂成年人带来一系列积极影响。在国际上为患有其他颅面疾病的个人开展类似举措也存在空间。鼓励非营利组织定期评估其干预措施，为其有价值的工作建立更坚实的证据基础。
