Thriving alongside cystic fibrosis: Developing a grounded theory of empowerment in children and young people with cystic fibrosis during key life transitions

Background: Although the importance of patient empowerment is increasingly recognized, little is known about empowerment in children and young people (CYP) with long-term conditions. Empowerment may be particularly important in CYP with cystic fibrosis (CF) due to high treatment burden and limited opportunities for peer support.

Methods: A Grounded Theory method was employed to develop a preliminary theory of empowerment in CYP with CF. Seven CYP with CF, five parents and four professionals were interviewed.

Results and conclusions: The emerging model suggests that ‘thriving alongside CF’ may be supported by interactions between ‘having a team’ and ‘taking charge and having a voice’, leading to ‘being able to just be a child’, that ‘concealing self’ may get in the way of ‘thriving alongside CF’ and that these processes occur within wider medical and developmental contexts. Study limitations, clinical and research implications are discussed.