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

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.