Le 15/10/2021 de 13:30 à 15:30
Regards croisés sur le polyhandicap : De la création du terme jusqu’à l’étude des différentes représentations actuelles
Mathilde Tafforeau (Angers, France), Margaux Pouyfaucon (Cholet, France), Pauline Ali (Angers, France), Chantal Tessiot (Angers, France), Mickael Dinomais (Angers, France), Isabelle Richard (Angers, France)
Objective : « Polyhandicap » is a French term used since the 1960’s originally in the context of medico-social institutions. It’s closest english translation is « profound intellectual and multiple disabilities » but these terms may reflect a slightly different approach. Recent recommendations for the management of such patients 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 underlying concept and facilitate international publications.
Material / Patients and Methods : This study is based on 33 semi-structured interviews conducted from January to April 2021 with medical doctors, health workers, caregivers, and administrative staff involved with such patients. The interview explored the respondant’s opinion regarding definition, assessment and management of « polyhandicap ».
Results : 45% of the respondents include profound intellectual disability in the core-definition, and could associate this item to the difficulties encountered in communication. Other respondents highlight the variability of the mental retardation. Coexisting disabilities are more or less extensively listed. 58% of the respondents state consider that this term should not be restricted to injuries taking place during early brain development. 55% of the respondents consider that the needs of such patients are not adequately met.
Discussion - Conclusion : Can these multitudes of representations be detrimental to people with « polyhandicap » ? Should the "polyhandicap" be considered as a disease or does it combine a more functional notion? Can this rather French concept, imperfectly covering other terms used abroad, be harmonized internationally?
Keywords : Polyhandicap; Immature brain; Profound intellectual disability; Profound Intellectual and multiple disabilities; recommendations; international term