Quality of Life of the Families of People with Intellectual Disability in Spain

Abstract

The object of this research is to build up a picture of what families with children with intellectual disability in Spain understand by quality of life and, on this basis, draw up a scale specially focusing on adults (over 18) that will furnish information on the support required by these families and so allow us to promote the necessary resources from the organizations and the different administrations. This research is based on the work on the quality of life of people with intellectual disabilities and their families carried out by various research groups over the past few decades. The project involves researchers from the University of Las Palmas de Gran Canaria, the University of Seville, the Autonomous University of Madrid and the University of the Basque Country, as well as from the Ramon Llull University in Barcelona, who coordinated the project. The work comprises focus groups with parents and siblings, and interviews with people with intellectual disability in the five Autonomous Communities where the universities taking part are based. At the moment we are in a position to present only the general approach of the research (characteristics of the sample, composition and distribution of the focus groups, data analysis procedures, etc.) and the results of the pilot study which will enable us to define more precisely the questions and the methodology to be employed in the fieldwork.