RESUMO
Cystic fibrosis is a disease that conveys a large amount of anxiety. Nevertheless, it is always said that the psychosocial adaptation of the patients and their families is good. In this study, we analyzed the quality of life and the knowledge of the illness possessed by parents of 55 children with cystic fibrosis. The data obtained suggested a good level of knowledge about the disease and an acceptable assessment of their quality of life. The familiar problems reflected in the study concerned regular school attendance and the communication between parents and patients, mainly concerning the illness. This was more obvious with teenagers (12 cases: 21.8%). Finally, it can be stated that the work activity and social relationships of the families had changed notably since the time of diagnosis (70% of the 55 cases reflect this change), with no differences among the age groups. We conclude by stressing the importance of supporting these families, especially at the moment of diagnosis. The associations for cystic fibrosis are of great importance for preventing psychosocial problems amongst their membership.
