Regards croisés sur le polyhandicap : de la création du terme aux représentations actuelles

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. MethodsThis 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”. ResultsForty-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. DiscussionThese 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.