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

CYSTIC fibrosis diagnosis; PSYCHOLOGY information storage & retrieval systems; CINAHL database; META-analysis; SOCIAL support; SYSTEMATIC reviews; SELF-efficacy; CYSTIC fibrosis; CONCEPTUAL structures; INTERPERSONAL relations; DECISION making; DESCRIPTIVE statistics; ECONOMIC aspects of diseases; MEDLINE; THEMATIC analysis; FAMILY relations; DATA analysis software

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. 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. 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. 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. Empowerment in children and young people with cystic fibrosis can be facilitated by supportive and respectful relationships with family, friends and clinical teams, that enable them to feel heard and understood. It can be further supported by providing developmentally appropriate information and opportunities for children and young people to experience mastery and competency in typical childhood activities. Prejudices and assumptions about the capabilities of children and young people with CF, even when based in good intentions, can act as a barrier to empowerment. Empowerment can shape (and be shaped by) the way the children and young people navigate differences associated with living with CF. [ABSTRACT FROM AUTHOR]

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