Section of Medical Ethics, Department of General Practice, Amsterdam UMC, Location AMC, University of Amsterdam, Amsterdam, The Netherlands.
Department of Medical Ethics & Health Law, Leiden University Medical Center, Leiden, The Netherlands.
J Appl Res Intellect Disabil. 2020 Nov;33(6):1141-1150. doi: 10.1111/jar.12740. Epub 2020 May 5.
Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.
We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.
Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.
Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.
父母对其患有严重智力和多重残疾的孩子的了解被视为为孩子提供支持和照顾的关键。本研究旨在探讨这种知识的本质和可转移性。
我们进行了解释性综合，在 PubMed、CINAHL、Philosopher's Index 和 PsycINFO 中进行了搜索，并纳入了十四项研究。
父母的知识基于他们与孩子的长期特殊关系，被描述为一种直觉、一种本能、一种第六感和一种感觉。父母将他们的知识应用于解释孩子的意图沟通、幸福和疼痛，以及作为倡导者反对医学专业人员更客观的方法。以身作则和传递叙事被视为传授这种知识的重要方式。
提出了如何应用和保留父母的知识以改善对患有严重智力和多重残疾的人的护理和支持的建议。
