Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example.
Even in Sweden’s generous welfare system, parents of kids with ID still feel socially isolated and time-starved.
01Research in Context
What this study did
Researchers mailed surveys to 1,000 Swedish families who had a child with intellectual disability, Down syndrome, or autism.
They asked about money worries, free time, and social life.
Sweden gives families long paid leave, cheap health care, and cash disability benefits, so the team wanted to see if parents still felt stressed.
What they found
Money stress was almost gone.
Yet parents still said, "We have no free time and no social life."
In short, cash help fixed the wallet, but not the clock or the loneliness.
How this fits with other research
Whitehouse et al. (2014) followed Swedish kids into adulthood and found the same story: parents still provide heavy care and feel high stress.
Channell et al. (2023) looked only at young adults with Down syndrome and showed that good job matches and natural supports calm parents down.
Laposa et al. (2017) asked families in Southeast Europe the same questions. Those parents also feel isolated, even though their countries give far less money.
Together, the four studies say: cash helps, but community and time matter everywhere.
Why it matters
When you write a behavior plan, add goals for parent respite and peer meet-ups, not just skill targets. Ask, "Who can watch the child for two hours?" and "Where can parents talk to others like them?" These steps may cut stress more than any extra funding.
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02At a glance
03Original abstract
BACKGROUND: Most studies on families with children with intellectual disability (ID) have been carried out in the UK or the USA, and are influenced by the societal organization, and political and economic climate of those countries. In the USA and the UK, the care and well-being of children, with or without ID, are seen almost exclusively as the individual family's responsibility. In Sweden, the care and well-being of children are seen more as a joint responsibility. Swedish society has developed many privileges for all parents in order to help them care for their children, and the support for parents of children with disabilities is provided exclusively by the Government and the community. The overall question explored in this descriptive, quantitative and qualitative study was: Are families in Sweden experiencing the stressors and life situations described in the studies of parents in more individualistic societies? METHODS: Two hundred and twenty-six families with children with ID and 234 control families with children ranging from 0 to 16 years of age answered mail surveys. RESULTS: Taken together, parents in Sweden describe most of the stressors proposed in the international literature with the exception of financial strain. Restricted social life and time restrictions seem to be the two most evident and bothersome stressors for Swedish families with children who have ID. CONCLUSIONS: As in previous research, the parents of children with ID and autism experienced more stressors and restrictions in their lives than the parents of children with DS and control families.
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00494.x