Caring for Adolescents with Cystic Fibrosis, in Portugal: The Nurse's Role

This study aimed to describe the nurse's role in the transition processes of adolescents with cystic fibrosis and their parents. Cystic fibrosis is a multisystem, life-shortening genetic disease, caused by malfunction of the protein-encoding gene Cystic fibrosis transmembrane conductance regulator, characterized by a disturbance of external secretion glands. Moreover, the potential presence of respiratory, gastrointestinal, pancreatic, and reproductive-related symptomatology in these patients can add a substantial burden to the disease. In Portugal, the prevalence rate is 1:7,963 of newborns and the life expectancy is around 40 years. Because of the disease multiple-related symptoms, sometimes disabling, health teams include different professionals, with nurses being the main responsible for caring for adolescents with Cystic Fibrosis and providing guidance to their parents. A qualitative paradigm of phenomenological type was designed. A total of 20 semi-structured interviews were conducted with participants selected through the snowball technique. Content analysis was performed as proposed by Bardin. The average age of participants ranged between 28 and 53 years, and the average time of professional exercise ranged between 5 and 27 years. From the analysis of the interviews, the category Nurse's Role emerged, followed by the subcategories, identify needs, caring, communicate, train, continuity of care, teamwork, care partnership, promoting standardization. Nurses identified the nature of the nursing role as a strong determinant to facilitate monitoring and intervention processes for adolescents with cystic fibrosis and their parents. Nursing therapeutics aim to promote, prevent, and effectively contribute to the development process and recovery of stability and well-being of adolescents with cystic fibrosis and their parents.