Youth, disability and quality of life.

Abstract

When broader aspects of health are considered especially when assessing the life of the disabled it becomes necessary to reach beyond physical measurements to more dynamic aspects including the individual's other resources and demands. In such a context issues of quality of life are important. Quality of life is here defined as a term describing the total existence of an individual or a group and is operationalized in three life spheres: external conditions, interpersonal conditions and personal psychological conditions. National samples of youths aged 12-18 years with cystic fibrosis and myelomeningocele are compared to a reference group of normal youths in the five Nordic countries. The study was based on a mailed questionnaire. The results show that the disabled groups had equal external conditions as their peers while they rated lower on the interpersonal and personal levels. This indicates that the Nordic countries have succeeded in providing a good material support for families with handicapped youths. The fact that these families are also more satisfied with the different life spheres means that both objective and subjective needs are met. The social networks and personal psychological conditions, though, proved to be less sufficient and there is still a lot to be done to give handicapped youngsters a full life.