Quality of life issues in the development and evaluation of services for people with intellectual disability

Abstract

This paper reviews and evaluates issues and methodologies for the assessment and promotion of quality of life (QOL), a multidimensional and dynamic construct frequently used to measure psychological and physiological wellbeing in people with intellectual disability (ID). Objective and subjective components of QOL are critically reviewed, together with the social and psychological factors that impinge on it. The paper discusses contrasting approaches to the assessment of QOL, including process-centered and outcome-centred approaches to evaluation. The difficulties related to eliciting subjective QOL from people with ID are outlined, and the problems inherent in the substituted use of proxy evaluations of QOL for people with ID are discussed. In the absence of relevant research in this group, proxy research findings from health-related literature are related to QOL issues for people with ID. Finally, the paper proposes that future research should directly address the question of concurrence in QOL evaluations between and people with ID and their proxies.