Individual and Family Quality of Life in Intellectual Disability: A Challenging Relationship

Abstract

AbstractRecently, new patient-oriented outcome measures have emerged in disability research and practice. Among these, quality of life (QoL) has gained a central place. Nevertheless, most published articles on QoL still refer to health-related aspects and not to generic ones. The QoL approach represents an effort to mobilize and revalue resources that can help a person (and the holistic system that they represents) to embark on or to continue a lifespan curriculum of life skills development and enjoyment. Despite family QoL is emerging as an important research framework to understand the impact of individuals with ID on the quality of life of their family members, there is a lack of specific knowledge on the relationship between family and individual QoL. This chapter aims to study the correlation between QoL scores of individuals with ID and members of their families. Sixty-five parents or relatives of 65 subjects with ID were recruited in five different facilities across Italy to be administered the Italian adaptation of the Family Quality of Life Survey. QoL of subjects with ID was assessed through the administration of the Italian validation of Quality of Life Instrument Package (BASIQ). Some significant correlations were found between most family QoL area scores and all areas scores of individual QoL. Although further research is required, results suggest that QoL is expressed in somewhat different ways for individuals with ID and in members of their families. Such differences could impact QoL of people with ID, especially in those areas with the strongest correlations.KeywordsIntellectual DisabilityIntellectual DisabilityFamily QualityIntellectual Developmental DisorderOpportunity ScoreThese keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.