Objective

Previous research exploring patient-practitioner communication in relation to adherence in cystic fibrosis (CF) is limited. This UK study explored the views of adults with CF on how treatment adherence (related to all CF treatments) is discussed in routine CF care.

Methods

12 White British adults (ten females; aged 20-37 years; mean 30.1 years) with CF participated in semi-structured interviews.

Results

Three overarching themes were developed through reflexive thematic analysis: 1) ‘The power of language’; 2) ‘Health professionals do not recognise the importance of context’; and 3) ‘‘Admitting’ non-adherence is difficult’.

The way in which adherence is discussed in adult CF care is viewed as paternalistic and infantilising. Participants reported that healthcare professionals do not always consider the desire to balance treatment-taking with living a normal life. Unwelcome responses from healthcare professionals, and the inability to accurately self-report the amount of treatment taken made it difficult to ‘admit’ non-adherence.

Conclusions

A culture change is needed in CF care such that people who struggle to take their treatments are not labelled as disobedient, wilfully disobeying orders from healthcare professionals in positions of authority. Instead, an open, honest, non-judgemental approach, as recommended by healthcare agencies for over a decade, should be adopted.