Quality of Life in Individuals with Intellectual and Developmental Disabilities: The Congruency Effect between Reports

Abstract

Assessing quality of life (QoL) is important to provide personalized and individualized support plans with the purpose of improving personal outcomes. Based on the conceptual model of QoL, the aim of this study was to assess the congruence between the perceptions of institutionalized individuals with intellectual and developmental disabilities (IDD) and the perception of a third party, regarding QoL. Forty-two individuals participated in this study, including twenty-one with mild to severe IDD and their family members/caregiver/reference technician, who responded to the Personal Outcomes Scale (Portuguese version). Significant differences (p < 0.05) were found between reports in the personal development (t = −2.26; p = 0.024), emotional well-being (t = −2.263; p = 0.024), physical well-being (t = −2.491; p = 0.013) and total QoL (t = −2.331; p = 0.02). The results further show that most third-party reports tend to undervalue the QoL of the individual with IDD, and that there is no congruence in any of the QoL domains. The inclusion of self-reports in the QoL assessment is important. In addition to the assessment of third-party reports, the process of making decisions appropriate to the context and individual characteristics is equally important. On the other hand, the inclusion of third-party reports is an opportunity to promote communication among all stakeholders, recognize and discuss differences, and promote QoL, not only of individuals with IDD, but also of families.

The Influence of Physical Activity Regime on Body Composition in Teenagers With and Without Intellectual Disabilities

“…Disabled youths are disproportionately underserved by the recreation and adapted sports programs compared to typical youths. This lack of programs contributes to higher idleness among youths with disabilities, persisting to adulthood [36]. Providing adapted sports programs is a crucial characteristic of a society promoting equal opportunities [37,38].…”

A Systematic Approach to Implementing, Evaluating, and Sustaining the Shared Citizenship Paradigm in the Disability Field

“…As an independent variable, for example, the context includes personal and environmental characteristics that are not typically manipulated, such as age, language, culture and ethnicity, sex, and family. As an intervening variable, context includes organizations, systems, supports, and societal policies and practices that can be manipulated to enhance human functioning and personal outcomes [16,30,31]; 3.…”