School of Public Health, University of Sydney, Camperdown, New South Wales, Australia.
Child Development Unit, Children's Hospital at Westmead, Sydney Children's Hospitals Network, Westmead, New South Wales, Australia.
Health Expect. 2024 Feb;27(1):e13925. doi: 10.1111/hex.13925. Epub 2023 Nov 28.
Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability.
DESIGN, SETTING AND PARTICIPANTS: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses.
Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context.
The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital.
Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
智障儿童会遇到患者安全问题，导致其护理体验和健康结果不佳。本研究旨在确定与在两家三级州立儿童医院和一家儿童姑息治疗中心就诊的 0-16 岁智障儿童相关的患者安全问题；描述并理解这些因素，以修改澳大利亚患者安全教育培训框架，以满足智障儿童和青少年的特殊需求。
设计、地点和参与者：来自两家儿科医院和一家姑息治疗病房的智障儿童的家长参与了半结构化访谈，以了解他们在患者安全背景下对孩子护理的体验。对来自不同背景的 13 名有智力、发育和医疗诊断的儿童的家长进行了访谈。
从主题分析中得出了 8 个关于智障儿童和青少年住院安全护理的主题：安全不仅是安全，还包括感到安全；消极的轻视态度会危及安全、质量和护理体验；家长作为安全倡导者的角色包括被倾听、被包容和被赋权；需要有目的、有计划的沟通和护理协调，以建立信任和改善护理；系统、流程和环境需要调整以防止发生患者安全事件；由于资源和技能不足导致护理不平等，需要培训残疾特定的安全和质量问题以及核心员工属性：善良、耐心、灵活性和响应能力。家长们强调了在向工作人员提出担忧时被忽视并被要求在缺乏支持的情况下提供护理的困境。家长们还报告说缺乏全面的护理协调服务。他们指出，医疗保健系统在适应家庭和以儿童为中心的环境方面存在局限性。
为智障儿童开发改编后的患者安全教育培训框架时，应考虑如何让员工转变态度并减少偏见，从而进行更安全、更好的护理调整。此外，适用于这些儿童的质量和安全问题也可以推广到医院中的所有儿童。
项目顾问小组中的家长倡导者会看到问题，以确定它们是否适合访谈。
