The impact of severe asthma on patients’ autonomy: A qualitative study

Abstract

Background

People living with severe asthma may have ongoing debilitating symptoms despite high‐dose treatment. Clinical guidelines for severe asthma recommend concepts such as patient centeredness, shared decision making and self‐management, at the heart of which lies autonomy.

Objective

This study aimed to explore the role of autonomy in patients’ narratives about their experiences of living with and managing severe asthma.

Methods

In‐depth semi‐structured interviews were video‐ and/or audio‐recorded and transcribed. Data were categorized using a hybrid approach to analysis incorporating both inductive and deductive methods, informed by the self‐determination construct of autonomy. Analysis and comparison across and within categories were conducted to develop final themes.

Results

Twenty‐nine face‐to‐face interviews, lasting 1.5‐4 hours, were conducted across Australia. Patients’ autonomy was enacted or challenged in a range of situations, such as interacting with health‐care providers, maintaining employment, managing symptoms, and dealing with threats to self‐identity. Two main themes were discerned from the analysis: (a) the desire to live an “unconstrained” life; and (b) preservation of self‐identity.

Conclusion

Our findings suggest that autonomy is broader than conventional medical concepts such as decision making and information seeking. Future research should consider these findings when developing and implementing patient‐driven self‐management interventions for those living with severe asthma.