Oulton Kate, Sell Debbie, Gibson Faith
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, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.
J Appl Res Intellect Disabil. 2020 Sep;33(5):917-926. doi: 10.1111/jar.12713. Epub 2020 Feb 19.
Limited evidence exists of what hospital care is like for parents of children and young people (CYP) with intellectual disability (ID). Effective collaboration is often missing, with parents lacking trust in professionals, with feelings of being expected to care and consequently unable to leave their child. This paper focuses on what parents want from their relationship with healthcare professionals.
An ethnographic approach was used, including in-depth interviews and informal discussions with nine parents of CYP with intellectual disability. Researcher voice poems are interspersed with quotations to illustrate key findings.
Parents described the need for a genuine partnership with professionals. They identified seven elements that ideally characterize this partnership: Preparation, Accessibility, Reliability, Trust, Negotiation, Expertise and Respect (PARTNER).
Children and young people with intellectual disability and their parents are frequent users of healthcare services. Getting it right from the outset is important to establish their trust in the system.
关于智障儿童和青少年（CYP）的父母在医院接受护理的情况，现有证据有限。有效的合作往往缺失，父母不信任专业人员，感觉被期望去照顾孩子，因此无法离开孩子。本文关注父母希望从他们与医疗保健专业人员的关系中得到什么。
采用人种志方法，包括对九位智障儿童和青少年的父母进行深入访谈和非正式讨论。研究人员的语音诗穿插着引语以说明主要发现。
父母描述了与专业人员建立真正伙伴关系的必要性。他们确定了理想情况下这种伙伴关系的七个要素：准备、可及性、可靠性、信任、协商、专业知识和尊重（PARTNER）。
智障儿童和青少年及其父母经常使用医疗保健服务。从一开始就做好至关重要，以建立他们对该系统的信任。
