Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy

Abstract

BACKGROUND: There is substantial literature investigating quality of life (QoL) of individuals with intellectual disability (ID). QoL of families of people with ID is emerging as an important field of research. Despite this, there is a lack of studies regarding their relationship. AIM: The present paper aimed to study the relationship between QoL scores of individuals with ID and members of their families. METHODS: Twenty-seven parents or relatives of 27 adults with ID were recruited by four different research centres across Tuscany (Italy) to be interviewed through the Italian adaptation of the Family Quality of Life Survey - 2006 (FQoLS-2006), a tool developed for use in a multiple-country study on family QoL. The FQoLS-2006 was translated and adapted to Italian through three revisions. The last was submitted to the authors of the original version, who also maintain an electronic data file and data archive for statistical evaluations in various countries. QoL of persons with ID was assessed through the administration of the Quality of Life - Instrument Package. QoL scores were analysed to describe population characteristics and to examine the relationships among measures of individual and family QoL using correlations (Pearson and Spearman). RESULTS: Findings showed that family ratings of QoL were generally low. Families interviewed reported a low level of QoL in 'Support from Others' and 'Community Interaction', while 'Family Relationships' and 'Health of the Family' rated higher. For individual QoL, individuals had the lowest scores in the area of 'Spiritual being' and higher scores in the area of 'Physical being'. Correlations examining possible relationships among Importance, Satisfaction and Opportunities found some statistically significant correlation coefficients between some aspects of the three main areas of individual QoL (Being, Belonging and Becoming) and the nine family domains. Most of these correlations regarded family 'Financial Well-Being', 'Family Relationships, 'Support from Service' and 'Support from Others' areas. CONCLUSIONS: The results of this study suggest that QoL is perceived somewhat differently by individuals with ID and by members of their families. This difference could negatively impact QoL of people with ID, if their views are not taken into account when planning for family support. The relationships between individual and family QoL appear to be quite complex, and such complexity needs to be clarified in future research.

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