Empowerment in children with cystic fibrosis

Section A

This is a literature review of patient empowerment in children and young people (CYP) with cystic fibrosis (CF), using a meta-synthesis of 17 qualitative studies. Thematic synthesis identified analytic themes: ‘relational support’, ‘information and understanding’, ‘feeling heard and respected’, ‘mastery and competence’, appeared to facilitate empowerment; ‘prejudice and assumptions’ was identified as a potential barrier. ‘Navigating being different’ appeared to both influence and be influenced by empowerment. Findings provide an initial understanding of factors influencing empowerment in CYP with CF. Potential clinical and research implications are considered.

Section B

This is an empirical paper presenting a grounded theory study that aims to develop a preliminary theory of empowerment in CYP with CF. Seven young people with CF, five parents and four professionals were interviewed. 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/getting on with life’. ‘Concealing self’ may get in the way of ‘thriving alongside CF’. These processes occur within wider medical and developmental contexts. Study limitations, clinical and research implications are discussed.