Création et validation d'une échelle de qualité de vie et d'une grille d'observation des caractéristiques personnelles et environnementales pour les enfants polyhandicapés : enseignements d'une étude

Measuring the quality of life of people with profound intellectual and multiples disabilities (PIMD) is a major issue for the affected persons themselves, for their families and for the professionals working near them, but raises serious methodological issues for researchers. A study was lead in 2011 by a team of researchers from Comité d'études, d'éducation et de soins auprès des personnes polyhandicapées (CESAP - Comity for studies, education and care for people with PIMD), in order to build a quality of life scale for children with PIMD from 6 to 14 years old. In this paper, we present its theoretical as well as methodological learnings: the scale could not be statistically verified, but we gathered very rich data about personal and environmental features of children with PIMD nowadays in France. Moreover, this study opens up interesting perspectives to imagine other ways to investigate those children's quality of life.