Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia.
Slovenian families of children with IDD value all life domains highly but see few opportunities to attain them—target community supports, not just child services.
01Research in Context
What this study did
Researchers gave the Family Quality of Life Survey to Slovenian parents who have a child with intellectual or developmental disabilities.
They asked how important each life domain is and how much the family can actually reach it.
The survey looked at areas like family relationships, money, safety, and support from others.
What they found
Parents said every life area is very important.
Yet they also said their families get few chances to reach those same areas.
The gap shows unmet needs for help outside the home, not just help for the child.
How this fits with other research
Bhaumik et al. (2009) used the same survey earlier and found support from others was rated lowest, matching the Slovenian gap.
Griffith et al. (2012) later repeated the study in Malaysia and saw the same pattern: high value, low attainment.
Alnahdi (2024) went a step further and proved that giving disability-specific support really does raise family quality of life, turning the Slovenian complaint into an action plan.
Golubović et al. (2013) warn that parent and teen ratings can differ, so collecting both views keeps plans accurate.
Why it matters
You now know families value every life area, so check each one during assessment. Ask where they feel blocked, then link them to concrete community supports like respite, sibling groups, or financial aid. Small referrals can close the big gap between what families want and what they get.
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02At a glance
03Original abstract
BACKGROUND: Research was conducted, within the framework of the International Family Quality of Life Project, on the quality of life of families with a member who has a disability. We concentrated on the nine specific domains that the family life measure used, and recorded data from five of its six measurement dimensions: Importance, Opportunities, Initiative, Attainment and Satisfaction. METHOD: The sample consisted of 20 families from Slovenia with children who have intellectual or developmental disabilities. The data were collected using the Family Quality of Life Survey-2006. RESULTS: Except for Community Interaction, the other domains (Health, Financial Well-Being, Family Relations, Support from Others, Support Services, Influence of Values, Careers, Leisure and Recreation) show statistically significant differences among the five dimensions measured. Importance was rated highest, and Attainment and Opportunities were rated lowest, while Initiative and Satisfaction were evaluated lower than Importance but higher than Attainment and Opportunities. Among the domains of family life, Family Relations was evaluated the highest from the perspective of all five dimensions. CONCLUSIONS: The family members rated Importance high for all of the quality of family life domains, but it appears from the lower Opportunities scores that their opportunities are limited; this may result in fewer possibilities for attaining a better quality of life. The results of our research are useful to Slovene researchers who work in the areas of special pedagogy and rehabilitation, politicians, non-governmental organisations and social services. The quality of life of families with children with disabilities, their empowerment and their inclusion into community life should be significantly enhanced when consideration is given to all the family members' support and service needs.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2011.01400.x