父母对其重度智力和多重残疾子女的隐性知识：一项定性研究。
Parents' tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study.
作者信息
Kruithof Kasper, Hoogsteyns Maartje, Zaal-Schuller Ilse, Huisman Sylvia, Willems Dick, Nieuwenhuijse Appolonia
机构信息
Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
Department of Paediatrics, Amsterdam UMC, Amsterdam, the Netherlands.
出版信息
J Intellect Dev Disabil. 2024 Dec;49(4):415-424. doi: 10.3109/13668250.2024.2336084. Epub 2024 Apr 23.
BACKGROUND
Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge.
METHOD
We conducted semi-structured interviews with parents ( = 11) about their tacit knowledge of their child, based upon video recordings they made of their child's behaviour, and analysed the data thematically.
RESULTS
Parents described their tacit knowledge as the capacity to read their child's subtle signs, or to sense and "just know" their child's situation. They had developed this knowledge because of their shared history of proximity and interaction and emphasised that it was crucial in ensuring their children's needs are met.
CONCLUSIONS
We describe how parents' tacit knowledge contributes to "good care" for persons with PIMD, interpret the implications for (medical) care practice, and discuss ways to deal with its limitations.
背景
父母的隐性知识在极重度智力和多重残疾者（PIMD）的照料中起着重要作用。由于对其性质和用途了解甚少，我们旨在探究这种父母隐性知识。
方法
我们基于父母对孩子行为的录像，对11位父母进行了关于他们对孩子隐性知识的半结构化访谈，并对数据进行了主题分析。
结果
父母将他们的隐性知识描述为解读孩子微妙信号的能力，或感知并“直接了解”孩子状况的能力。他们因共同的亲近相处和互动经历而形成了这种知识，并强调这对确保孩子的需求得到满足至关重要。
结论
我们描述了父母的隐性知识如何有助于对PIMD者的“良好照料”，解读其对（医疗）护理实践的影响，并讨论应对其局限性的方法。
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