Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy.
Adults with ID and their families often rate quality of life differently—ask both before you plan services.
01Research in Context
What this study did
Amore et al. (2011) asked adults with intellectual disability and their families to rate quality of life. They wanted to see how the two scores line up. The team used short Italian forms and looked for links between each life domain.
The study is a case series. It describes patterns rather than testing a treatment. All adults lived in Italy and received day or residential services.
What they found
Family ratings of quality of life were generally low. The links between individual and family scores were weak to modest. Areas like emotional well-being and social inclusion showed the biggest gaps.
In short, the person and the family often saw life differently.
How this fits with other research
Bhaumik et al. (2009) used the same Italian group to show that families value close relationships most and outside support least. Amore et al. (2011) later tied those family views to the adult's own voice, filling in the missing side of the story.
Golubović et al. (2013) found the same mismatch in teens with ID. Parents and adolescents agreed only modestly, with the biggest split on physical health. The adult pattern in Amore et al. (2011) looks like the teen pattern grown up.
Agiovlasitis et al. (2025) and Alqazlan (2025) later echoed the moderate scores in Saudi youth, but they added that boys and lower-income families fare worse. Culture and age shape the numbers, yet the core message stays: one viewpoint is not enough.
Why it matters
If you write support plans for adults with ID, collect both self and family QoL data. Low family scores can flag poor environmental fit even when the adult seems content. Use the gaps to pick targets like respite, social clubs, or self-advocacy training that help both sides feel better.
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2011.01464.x