Psychobiology of Stress and Health Lab, Psychology Department, Mount Allison University, 49A York Street, Sackville, NB, E4L 1C7, Canada.
NaviCare/SoinsNavi, Sackville, Canada.
BMC Pediatr. 2020 May 26;20(1):251. doi: 10.1186/s12887-020-02161-2.
This concept analysis aimed to clarify the meaning of "children with complex health conditions" and endorse a definition to inform future research, policy, and practice.
Using Walker and Avant's (2011)'s approach, we refined the search strategy with input from our team, including family representatives. We reviewed the published and grey literature. We also interviewed 84 health, social, and educational stakeholders involved in the care of children with complex health conditions about their use/understanding of the concept.
We provided model, borderline, related, and contrary cases for clarification purposes. We identified defining attributes that nuance the concept: (1) conditions and needs' breadth; (2) uniqueness of each child/condition; (3) varying extent of severity over time; 4) developmental age; and (5) uniqueness of each family/context. Antecedents were chronic physical, mental, developmental, and/or behavioural condition(s). There were individual, family, and system consequences, including fragmented services.
Building on previous definitions, we proposed an iteration that acknowledges the conditions' changing trajectories as involving one or more chronic condition(s), regardless of type(s), whose trajectories can change over time, requiring services across sectors/settings, oftentimes resulting in a lower quality of life. A strength of this paper is the integration of the stakeholders'/family's voices into the development of the definition.
本概念分析旨在厘清“患有复杂健康状况的儿童”的含义,并提出一个定义,以为未来的研究、政策和实践提供信息。
我们采用沃克和阿凡特(2011 年)的方法,并在包括家庭代表在内的团队成员的输入下,对搜索策略进行了改进。我们对已发表和灰色文献进行了回顾。我们还采访了 84 名参与照顾患有复杂健康状况儿童的医疗、社会和教育利益相关者,了解他们对该概念的使用/理解情况。
我们提供了模型、边缘、相关和相反的情况,以澄清概念。我们确定了细微差别概念的定义属性:(1)条件和需求的广度;(2)每个孩子/状况的独特性;(3)随时间变化的严重程度的不同;(4)发展年龄;以及(5)每个家庭/背景的独特性。前因是慢性身体、精神、发育和/或行为状况。存在个体、家庭和系统后果,包括服务碎片化。
在之前的定义基础上,我们提出了一个迭代版本,承认条件的变化轨迹涉及一个或多个慢性状况,无论其类型如何,其轨迹都可能随时间变化,需要跨部门/环境提供服务,这往往会导致生活质量下降。本文的一个优势是将利益相关者/家庭的声音纳入定义的制定过程中。