Portuguese adolescents with cystic fibrosis and their parents: An intervention proposal for nursing clinical practice

Purpose: Cystic fibrosis is a life-shortening genetic disease. It affects both patient and family with the nurse playing a key role in the monitoring process. This study sought to contribute to enhanced targeted health care to adolescents with cystic fibrosis and their parents by understanding the experiences of living with cystic fibrosis. Based on Afaf Meleis' Transitions Theory (1986) nurses identify the transition experienced by the study participants, thus contributing to the quality of nursing interventions. Design and methods: Two qualitative research studies using data collected through semi-structured interviews were conducted. The Straussian Grounded Theory was applied. The snowball technique was used for recruitment, under the inclusion criteria: adolescents aged between 10 and 21 years; diagnosis of cystic fibrosis for more than one year; and parents of these adolescents. A final sample of 16 adolescents and 14 parents was obtained. Results: Nursing therapeutic interventions acted as a facilitator of the health/illness transition process. Nurses' intervention areas were identified to empower adolescents and their parents with targeted knowledge and abilities to cope with problems. After diagnosis, parents assumed a new role-playing. Conclusions: Adolescents with cystic fibrosis and their parents experience various transition phases. Nurses can better help identifying the onset, persistence and ending of harmful periods. Practice implications: Adolescents with cystic fibrosis and their parents experience various transition phases. Nursing therapeutic interventions are cardinal to the health/illness transition. (c) 2021 Elsevier Inc. All rights reserved.

Automated summary

This study aims to enhance targeted healthcare for adolescents with cystic fibrosis and their parents by understanding their experiences of living with the condition. The findings highlight the important role of nurses in identifying and supporting transitions throughout the disease management process.