Carter Bernie, Arnott Janine, Simons Joan, Bray Lucy
Faculty of Health and Social Care, Edge Hill University, Ormskirk, UK.
School of Health and Well-Being, University of Central Lancashire, Preston, UK.
Pain Res Manag. 2017;2017:2514920. doi: 10.1155/2017/2514920. Epub 2017 Mar 26.
Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error ("learning to get on with it"); this was accomplished through "learning to know without a rule book or guide"; "learning to be a convincing advocate"; and "learning to endure and to get things right." Experiential and reflective learning was evident in the way the mothers developed a "sense of knowing" their child's pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers' concerns.
重度认知障碍（PCI）儿童是一个异质性群体，他们经常经历频繁且持续的疼痛。与孩子关系最密切的人是评估其疼痛的关键。这项混合方法研究旨在探讨父母如何获取评估和管理孩子疼痛的知识与技能。八位母亲完成了每周的疼痛日记，并在第1周和第8周接受了访谈。定性数据采用主题分析法进行分析，定量数据采用描述性统计分析。母亲们谈到通过试错系统来学习（“学会应对”）；这是通过“在没有规则手册或指南的情况下学会了解”、“学会成为有说服力的倡导者”以及“学会忍受并把事情做好”来实现的。母亲们培养出“了解”孩子疼痛的“知晓感”的方式中，体验式学习和反思性学习很明显。她们利用孩子通常表达和应对疼痛的具体知识，来帮助做出与疼痛相关的决定。卫生专业人员需要支持母亲/父母发展他们的知识和技能，并在疼痛评估中获得信心，而且他们应该认识到母亲们的担忧并采取行动。
