Calidad de vida de personas con graves afectacionesun estudio Delphi para el desarrollo de la Escala San Martín

Zusammenfassung

The quality of life issue of persons with severe disabilities (severe/profound disabilities and multiple disabilities) is still unsolved, appearing as the great forgotten in the research field. In spite of the numerous problems that seem to involve, this issue should not be considered as impossible or be postergated. Persons with severe and profound disabilities are a collective with an urgent and a relevant need of an operational model of quality of life that has been pointed out in the scientific literature since several years ago (Borthwick-Duffy, 1990; Goode & Hogg, 1994; Oulette-Kuntz & McCreary, 1996). Therefore, the goal of this paper consists in presenting a research that is focused in the development, validation and calibration of a new objective instrument to assess quality of life in persons with severe, profound, and multiple disabilities and to be answered by professionals, relatives and direct care staff: the San Martin Scale. Its suitableness to be also applied to persons with autism spec- trum disorders will be analyzed. The new instrument has been developed over the basis of the eight quality of life model and by means of a Delphi study with experts on people with severe, profound, and multiple disabilities. The main results of the study are discussed in this paper.