INFANTILE CYSTIC FIBROSIS

IMPRESSIONS OF PARENTAL FIGURES AND QUALIFICATION OF DIAGNOSTIC

Abstract

The objective of this study was to describe the impressions of parental figures about receiving the diagnosis of cystic fibrosis (CF) from their children aged between 0 and 2 years and to discuss the importance of qualifying diagnostic communication. This is a descriptive-exploratory research, carried out at a university hospital in Rio Grande do Sul, from January 2019 to August 2019. The sample consisted of 9 mothers, aged over 18 years. The instrument used for data collection was a semi-structured interview script, centered on communicating the bad news. In the interview, five categories emerged: the diagnosis of cystic fibrosis, the feelings aroused in parental figures, the support network, coping strategies and the qualification of diagnostic communication by health professionals. Data were analyzed qualitatively, using the content analysis method. The parental impressions that stood out were the feelings of despair, fear, anguish, ambivalence and mourning for the loss of the idealized baby. It was also identified that the way in which the bad news was communicated to the families had a significant impact on adherence to treatment and coping with childhood cystic fibrosis. Thus, it is concluded that the impact of bad news transmitted without proper preparation can interfere with coping with cystic fibrosis and parental investment in the child's psychic development.