Page Bethan, Harrop Emily, Beale Tania, Boyce Katherine, Smith Colette, Butler Siobhan, Sharrard Alison, Vincent Charles, Lee Alex Ch
Department of Experimental Psychology, University of Oxford, Oxford, UK.
Helen and Douglas House, Oxford, UK.
Frontline Gastroenterol. 2022 Aug 25;14(2):144-148. doi: 10.1136/flgastro-2022-102181. eCollection 2023.
To describe and disseminate a package of support for parents who care for children with gastrostomies, consisting of a library of videos and resources to support families from referral for gastrostomy surgery, to long-term support at home.
The resources were systematically developed and evaluated by parents, hospital and community-based nurses, paediatricians, a surgeon and researchers.
The videos empower families, reduce their anxiety and increase their confidence, providing support throughout the families' journey. Surveys and feedback from parents and clinicians show that the video library is seen as providing clear and comprehensive guidance and is suitable for integration into routine practice. To effectively disseminate these resources across a region, the videos need to be shared widely with relevant community and hospital-based teams, and shared through parent networks. The videos should be viewed as one part of a wider package of training and support, in combination with hands-on-practice and clinical support.
The resources described have been developed with and for families. Critically the videos are founded in the lived-experience of families, as well as the expertise of clinicians from community and hospital services. Similar resources are needed to support families performing other types of specialist care. The resources are freely available to any parent or clinical team.
描述并推广一套为照料胃造口术患儿的家长提供支持的方案，该方案包括一个视频和资源库，用于为家庭提供从胃造口术手术转诊到长期居家支持的全程支持。
这些资源由家长、医院和社区护士、儿科医生、一名外科医生以及研究人员系统地开发和评估。
这些视频增强了家庭的能力，减轻了他们的焦虑并增强了他们的信心，在家庭的整个过程中提供支持。家长和临床医生的调查及反馈表明，视频库被视为提供了清晰全面的指导，适合融入常规实践。为了在一个地区有效传播这些资源，视频需要与相关社区和医院团队广泛分享，并通过家长网络分享。这些视频应被视为更广泛的培训和支持方案的一部分，与实践操作和临床支持相结合。
所描述的资源是与家庭共同开发并为家庭而开发的。至关重要的是，这些视频基于家庭的生活经验以及社区和医院服务临床医生的专业知识。需要类似的资源来支持进行其他类型专科护理的家庭。这些资源可供任何家长或临床团队免费使用。
