Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example

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 familyʹs 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.