M. Tafforeau , M. Pouyfaucon , C. Tessiot , P. Van Bogaert , M. Dinomais , I. Richard
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引用次数: 0
Abstract
Introduction
“Polyhandicap” is a French term used since the 1960s originally in the context of medico-social institutions. Its closest english translation is “Profound Intellectual and Multiple Disabilities” but these terms may reflect a slightly different approach. Recent recommendations were issued by the French “Haute Autorité de santé”. The objective of this study is to explore the representations of different french stakeholders associated with “polyhandicap”, in order to better define the concept and facilitate international publications.
Methods
This study is based on 33 semi-structured interviews conducted from January to April 2021 with medical doctors, rehabilitation workers, caregivers, and administrative staff involved with such patients. The interview explored the respondents’ opinion regarding the definition, assessment and management of “polyhandicap”.
Results
Forty-five percent of the respondents include profound intellectual disability in the core-definition of “polyhandicap”. Other respondents highlight the variability of the importance of mental retardation and some associate this item to the difficulties encountered in communication. Coexisting disabilities are more or less extensively listed. Fifty-eight percent of the respondents state that the term of “polyhandicap” should not be restricted to injuries taking place during early brain development. Fifty-five percent consider that the needs of such patients are not adequately met.
Discussion
These multiple representations, source of confusion, can be detrimental to people with “polyhandicap”. This French concept, comprising three levels of analysis (medical, functional and social), and imperfectly covering other terms used abroad, is difficult to transpose internationally.
“多残障”是一个法语术语,自20世纪60年代以来最初用于医疗社会机构。它最接近的英文翻译是“深刻的智力和多重残疾”,但这些术语可能反映了一种略有不同的方法。最近的建议是由法国“高级自治机构”(Haute autorit de sant)提出的。本研究的目的是探讨与“多残障”相关的不同法国利益相关者的代表,以便更好地定义这一概念并促进国际出版物。方法采用半结构化访谈法,于2021年1月至4月对涉及此类患者的医生、康复工作者、护理人员和管理人员进行了33次访谈。访谈探讨了受访者对“多面手”的定义、评估和管理的看法。结果45%的受访者将深度智障纳入“多残障”的核心定义。其他答复者强调智力迟钝的重要性各不相同,有些人将这一问题与沟通中遇到的困难联系起来。共存的残疾或多或少被广泛列出。58%的受访者表示,“多残障”一词不应局限于早期大脑发育期间发生的损伤。55%的人认为这类患者的需求没有得到充分满足。这些多重表征是混淆的来源,对“多残障”患者是有害的。这一法国概念包括三个层面的分析(医学、功能和社会),不完全涵盖国外使用的其他术语,很难在国际上进行转换。
期刊介绍:
La recherche et les traitements des atteintes cérébrales Motricité cérébrale sa adresse aux ?praticiens de la motricité concernés par le examen et la rééducation des handicapés souffrant de troubles neurologiques et associés, allant du polyhandicap a le IMC. Motricité cérébrale publie des études et des évaluations sur les conséquences motrices, psychomotrices, pédagogiques et sociales résultant des atteintes cérébrales. La revue propose également des articles de clinique et de réadaptation.