Research addresses the impact of news for families of children with cystic fibrosis

Cystic fibrosis or mucoviscidosis is a disease that requires rigorous and continuous treatment, which requires changes in daily life and future plans of the patients and their families. To raise awareness among professionals about communication with relatives and patients, the medical Afonso Selene, the National Institute of Health of Women, Children and Adolescents Fernandes Figueira (IFF / Fiocruz) has developed a master's study especially focused on this issue.

Through the narratives of the interviewees, the researcher concluded that for the family, the way information is transmitted affect the way they face their illness. The news can be perceived in different ways according to the clarity with which they are passed to the family, which involves preparing the listener to consider the context in which people live and the consequences that cause them, he added.

The study aimed to understand what are considered difficult news for families and the meanings that are assigned to them. The survey took place between the months of May and June 2010 with the participation of nine mothers and a father of children between two and 12 years old, diagnosed at least two years with cystic fibrosis and who had their children in ambulatory treatment of Pulmonology of the IFF.

The interviewees spoke freely about the central theme of research. The narratives were, in general, in a tone excited and exciting. Sometimes they were interrupted by tears and promises of no more crying, as if the interviewees evoked an effort not to lose heart, not only to continue the narrative, but life - and in it, the fight against the disease, the plot that motivated , says the doctor.

Simple gestures like sitting down with the family to convey the information and the very tone of voice, help to reduce the impact of the news, showing concern and commitment to parents by health professionals. It is important that health professionals consider the consequences that may have a story and its consequences in everyday life, often exceeding the walls of the hospital.

With regard to training of health professionals, Selene finds it important to include chairs of humanities and communication skills in graduate school and / or training throughout their career, helping to develop a professional-patient relationship less painful for both parties and sensitizing practitioners to aspects of health-disease process. Caring is more than just treat: it is to walk along, you get interested in and work with others, concludes Selene.

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