Facilitators and barriers to empowerment in children and young people with cystic fibrosis: a meta-synthesis of the qualitative literature

Purpose
Patient empowerment may be particularly important in children and young people (CYP) with CF, due to high treatment burden and limited peer support opportunities. This review aimed to meta-synthesize the qualitative literature pertaining to empowerment in CYP with CF.

Materials and methods
This work was guided by the ENTREQ framework, with a search strategy based on the SPIDER framework. A systematic search of PsycInfo, Medline, CINAHL and ASSIA databases was conducted. Identified studies were quality assessed and data analysed using thematic synthesis. PROSPERO registration: CRD42019154014.

Results
Seventeen studies met inclusion criteria, though none explicitly explored empowerment. Thematic synthesis identified six analytic themes: relational support, information and understanding and feeling heard and respected appeared to facilitate empowerment, while prejudices and assumptions were identified as potential barriers. Mastery and competence and Navigating being different appeared to be components of empowerment.

Conclusions
The findings provide an initial understanding of patient empowerment in CYP with CF. Potential clinical implications include the need for more CYP-friendly information, more shared decision making and more opportunities to experience mastery. The need for further research is highlighted, particularly relating to developmental influences and factors unique to CF, which are not adequately addressed in existing patient empowerment models.