Oulton K, Sell D, Gibson F
Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
School of Health Sciences, University of Surrey, Guilford, Surrey, UK.
J Appl Res Intellect Disabil. 2018 Sep;31(5):792-803. doi: 10.1111/jar.12433. Epub 2018 Jan 16.
The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital-related needs and experiences of CYP with intellectual disabilities.
An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting.
Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume.
It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate.
英国的多份报告都表明有必要审查为残疾儿童和青少年（CYP）及其家庭提供的医疗服务：最一致的观点是服务需要量身定制以满足他们的个人需求。我们的目的是了解智障CYP与医院相关的需求和经历。
在一家儿科三级医院环境中，对一个神经科学病房和门诊部进行了人种志研究。
使用首字母缩写LEARN得出的五个主题解释了智障CYP在医院中什么是重要的：（i）小事情产生最大影响，（ii）消除不必要的等待，（iii）避免无聊，（iv）常规和家庭舒适是关键，（v）永远不要想当然。
至关重要的是，本文作者要继续挑战那种认为由于智障CYP无法参与就将其排除在研究之外是可以接受的观点。
