Hurt Lisa, Langley Kate, North Kate, Southern Alex, Copeland Lauren, Gillard Jonathan, Williams Sharon
Division of Population Medicine, School of Medicine, Cardiff University , Cardiff, UK.
School of Psychology, Cardiff University , Cardiff, UK.
Int J Health Care Qual Assur. 2019 Feb 11;32(1):208-223. doi: 10.1108/IJHCQA-08-2017-0153.
The purpose of this paper is to describe current care pathways for children with autism including enablers and barriers, as experienced by health professionals, education professionals and families in South Wales, UK.
DESIGN/METHODOLOGY/APPROACH: This study is based on a mixed-methods approach using focus group discussions, creative writing workshops and visualisation using rich pictures.
The experiences of the care pathways differed significantly across the three groups. Health professionals described the most rigidly structured pathways, with clear entry points and outcomes. Education professionals and parents described more complex and confusing pathways, with parents assuming the responsibility of coordinating the health and education activity in a bid to link the two independent pathways. All three groups identified enablers, although these differed across the groups. The barriers were more consistent across the groups (e.g. poor communication, missing information, lack of transparency, limited post-diagnosis services and access to services based on diagnosis rather than need).
This research could inform the design of new services which are premised on multi-agency and multi-disciplinary working to ensure children with Autism spectrum disorders (ASD) receive joined up services and support.
ORIGINALITY/VALUE: Although this study did not represent all professional groups or all experiences of autism, the authors examined three different perspectives of the ASD pathway. In addition, the authors triangulated high-level process maps with rich pictures and creative writing exercises, which allowed the authors to identify specific recommendations to improve integration and reduce duplication and gaps in provision.
本文旨在描述英国南威尔士的健康专业人员、教育专业人员和家庭所经历的自闭症儿童当前护理路径，包括促进因素和障碍。
设计/方法/途径：本研究基于混合方法，采用焦点小组讨论、创意写作工作坊以及使用丰富图片的可视化方法。
三组人员对护理路径的体验差异显著。健康专业人员描述的路径结构最为严格，有明确的切入点和结果。教育专业人员和家长描述的路径更为复杂且令人困惑，家长承担起协调健康和教育活动的责任，试图将这两条独立的路径联系起来。所有三组人员都确定了促进因素，尽管不同组的促进因素有所不同。障碍在各组中更为一致（例如沟通不畅、信息缺失、缺乏透明度、诊断后服务有限以及基于诊断而非需求获取服务）。
本研究可为基于多机构和多学科合作的新服务设计提供参考，以确保自闭症谱系障碍（ASD）儿童获得联合服务和支持。
原创性/价值：尽管本研究并未涵盖所有专业群体或自闭症的所有经历，但作者审视了自闭症谱系障碍护理路径的三种不同视角。此外，作者将高级流程图与丰富图片和创意写作练习相结合，从而能够确定具体建议，以改善整合并减少服务提供中的重复和差距。
