Social-Medical Aspects of Cystic Fibrosis in Norway: IV. A Comparison of the Parents' and the Professionals' Judgement of the Severity of the Handicap

To obtain information about their knowledge and their degree of acceptance of their child's condition, the parents of children with cystic fibrosis were asked to give a general judgement of their child's handicap. The study was based on questionnaires answered by the parents of 90 children with cystic fibrosis. One pediatrician and one social worker independently gave their judgement on the same issues. The parents judged 61% of the children as lightly handicapped, 33% as moderately, and 6% as seriously affected, while the professional judgement was 43%, 37% and 19%, respectively. The study indicates that the parents tend to judge their child's condition as less severe than the professionals. The difference of opinion is greatest in the group of seriously affected children.