Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada.
Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada.
Disabil Rehabil. 2020 Oct;42(20):2967-2976. doi: 10.1080/09638288.2019.1574916. Epub 2019 Apr 11.
In the knowledge base examining experiences of childhood brain injury, the perspectives of children with brain injury are notably lacking. This failure to represent the voices of pediatric clients has resulted in an incomplete knowledge base from which to inform evidence-based rehabilitation practice. In this paper, we examine why the perspectives of children with brain injury are rarely sought and propose a new way forward. We draw upon current evidence and practices in related fields and present an exemplar from an in-progress qualitative arts-based research project with children with brain injury. Assumptions ingrained in research practices, particularly those surrounding the capacity of 'doubly vulnerable' children with brain injury to produce knowledge, have resulted in the relative exclusion of this group from research that concerns them. For the field to evolve, research practices must value children's first-hand accounts, engage them in co-constructing knowledge about their lives, and invite methods that meet their interests and abilities. By reframing how we think about the capacities of children with disabilities and shifting our research practices to include children with brain injury as knowledgeable participants, it becomes possible to expand the knowledge base upon which clinical rehabilitation practices are built.Implications for RehabilitationCurrent research practices preclude 'doubly vulnerable' pediatric populations, including children with brain injury, from actively contributing to research that concerns them.As a result, the perspectives of children with brain injury are virtually absent from research, rendering the evidence base upon which rehabilitative practices are built incomplete.Reframing how we think about the capacities of children with brain injury can shift how we engage with them, both in research and clinic, and may subsequently impact the knowledge available to us.Implications for client-centred rehabilitation are discussed, including the need to understand children as capable of insight into their own experience, as able to contribute to a more complete understanding of the health phenomena that affect them, and as invaluable and active participants in research and clinical care.
在儿童脑损伤经历知识库的审查中，明显缺乏脑损伤儿童的观点。未能代表儿科患者的声音导致了一个不完整的知识库，无法为循证康复实践提供信息。在本文中，我们探讨了为什么很少寻求脑损伤儿童的观点，并提出了一种新的方法。我们借鉴了相关领域当前的证据和实践，并展示了一个正在进行的基于艺术的脑损伤儿童定性研究项目的范例。研究实践中根深蒂固的假设，特别是围绕脑损伤“双重脆弱”儿童产生知识的能力的假设，导致该群体相对被排除在与他们有关的研究之外。为了使该领域发展，研究实践必须重视儿童的第一手资料，让他们共同构建关于自己生活的知识，并邀请符合他们兴趣和能力的方法。通过重新构建我们对残疾儿童能力的看法，并将我们的研究实践转变为包括脑损伤儿童在内的有知识的参与者，就有可能扩大临床康复实践所依据的知识库。
康复的意义 当前的研究实践排除了包括脑损伤儿童在内的“双重脆弱”儿科人群，使他们无法积极参与与他们有关的研究。
结果，脑损伤儿童的观点在研究中几乎不存在，使得康复实践所依据的证据基础不完整。
重新构建我们对脑损伤儿童能力的看法可以改变我们与他们的互动方式，无论是在研究中还是在临床中，并且可能随后影响我们可获得的知识。
讨论了以客户为中心的康复的意义，包括需要将儿童理解为有能力深入了解自己的经验，有能力为影响他们的健康现象提供更全面的理解，并且作为研究和临床护理的宝贵和积极参与者。
