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首页> 外文期刊>BMC Pediatrics >The dynamic system of parental work of care for children with special health care needs: A conceptual model to guide quality improvement efforts
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The dynamic system of parental work of care for children with special health care needs: A conceptual model to guide quality improvement efforts

机译：有特殊保健需求的儿童的父母育儿工作的动态系统：指导质量改进工作的概念模型

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Background The work of care for parents of children with complex special health care needs may be increasing, while excessive work demands may erode the quality of care. We sought to summarize knowledge and develop a general conceptual model of the work of care. Methods Systematic review of peer-reviewed journal articles that focused on parents of children with special health care needs and addressed factors related to the physical and emotional work of providing care for these children. From the large pool of eligible articles, we selected articles in a randomized sequence, using qualitative techniques to identify the conceptual components of the work of care and their relationship to the family system. Results The work of care for a child with special health care needs occurs within a dynamic system that comprises 5 core components: (1) performance of tasks such as monitoring symptoms or administering treatments, (2) the occurrence of various events and the pursuit of valued outcomes regarding the child's physical health, the parent's mental health, or other attributes of the child or family, (3) operating with available resources and within certain constraints (4) over the passage of time, (5) while mentally representing or depicting the ever-changing situation and detecting possible problems and opportunities. These components interact, some with simple cause-effect relationships and others with more complex interdependencies. Conclusions The work of care affecting the health of children with special health care needs and their families can best be understood, studied, and managed as a multilevel complex system.
机译：背景技术为具有特殊特殊保健需求的儿童的父母提供的照料工作可能会增加，而过多的工作需求可能会削弱照料质量。我们试图总结知识并开发护理工作的一般概念模型。方法系统地审阅经同行评审的期刊文章，这些文章重点关注有特殊医疗需求的孩子的父母，并解决与为这些孩子提供照料的身体和情感工作有关的因素。从大量合格的文章中，我们使用定性技术以随机顺序选择文章，以识别护理工作的概念性组成部分及其与家庭系统的关系。结果对具有特殊医疗保健需求的儿童的照顾工作发生在一个动态系统中，该系统包含5个核心组成部分：（1）执行诸如监测症状或进行治疗等任务，（2）发生各种事件并追求关于孩子的身体健康，父母的心理健康或孩子或家庭的其他属性的有价值的结果，（3）在一定的限制下（4）在一段时间内以可用资源运行，（5）在精神上表示或描绘时不断变化的形势并发现可能的问题和机会。这些组件相互作用，有些具有简单的因果关系，而另一些则具有更复杂的相互依赖性。结论可以最好地理解，研究和管理影响有特殊医疗需求的儿童及其家庭健康的护理工作，并将其作为一个多层次的复杂系统。

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