Family quality of life: adult school children with intellectual disabilities in Bosnia and Herzegovina.
Caregivers of adults with ID in Bosnia say money and social support are the biggest gaps.
01Research in Context
What this study did
Lancioni et al. (2011) asked 35 caregivers of adults with intellectual disability in Bosnia how life feels for their family.
They used a paper survey that lists life areas like money, health, and support. Caregivers rated how important each area is and how much help they actually get.
What they found
Money help and support from others were rated most important, but also most missing.
Caregivers expect only a little improvement in the future. Overall, needs are high and help is low.
How this fits with other research
Chou et al. (2007) ran a similar survey in Taiwan, yet asked the adults themselves. Those adults gave high marks, showing a gap between caregiver worry and self-reported happiness.
Najdowski et al. (2003) compared ratings from adults, parents, and staff. Parent scores matched adult scores better than staff scores, backing the idea that caregiver views are useful when the adult cannot answer.
Gerber et al. (2011) found that untreated pain, sleep problems, and vision trouble often spark behavior issues. Bosnian families listed low support; vision checks or pain screens could be hidden unmet needs within their answers.
Why it matters
If you serve adults with ID who live with family, ask caregivers about money strain and outside help first. These areas hurt most in Bosnia and likely echo in other low-resource regions. Add quick screens for vision, pain, and sleep at intake; fixing these may cut later behavior problems and lift family life without costly tools.
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02At a glance
03Original abstract
AIMS: This study endeavours to provide initial data on quality of life for families with adult children who have intellectual disabilities (ID) in the Canton of Sarajevo. METHODS: The principal measure used was the Family Quality of life Survey 2006 - main caregivers of people with intellectual or developmental disabilities. The sample consisted of the main caregivers of 35 families with adult school children with ID who attended classes in a specially adapted programme in the Center of Vladimir Nazor and in the Vocational Secondary School in Sarajevo. Of the 35 participants, 21 were male and 14 female. Students with disabilities ranged from 19 to 32 years old (mean 21.45). RESULTS: Consistent with previous research, the nine domains measured by the scale were all rated high for Importance. Opportunities were considered to be particularly low for Financial Well-Being and Support from Others. These domains were also rated lowest for Attainment and Satisfaction. Initiative was relatively high across all domains, and Stability (the degree to which things were seen as likely to improve or decline) varied slightly across domains but the means indicated that things are expected to stay almost the same or improve slightly. CONCLUSIONS: This research provides initial data for family quality of life in Bosnia and Herzegovina. It also provides suggestions for improving quality of life for families that have one or more members with ID. The results should also contribute to rejecting stereotypes and promoting inclusion of children with ID as well as the rights of their families.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2011.01434.x