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.

This systematic review found a paucity of qualitative studies reporting on people's perspectives of living with severe asthma, and a focus on clinical rather than personal issues. Our synthesis reveals that severe asthma was disempowering, and a threat to identity and life roles. What was important to people living with severe asthma was striving to achieve a greater level of personal control over their condition, but these efforts received little support from their healthcare providers. Thus, more attention should be paid to understanding the self-management strategies and personal goals of people living with severe asthma. This may assist in designing interventions to better support patient self-management and improve health outcomes.

Objective: To conduct a systematic review and synthesis of qualitative evidence exploring the views and experiences of people living with a chronic illness that utilised self-determination theory. Methods: We searched MEDLINE via OvidSP, PsycINFO via OvidSP, PubMed, CINAHL, EMBASE, Google Scholar, the journals Qualitative Health Research and Qualitative Research. Studies were included if they used qualitative methods, explored the subjective experiences of people living with a chronic illness and underpinned the analysis with self-determination theory. Results: From 4605 articles, six met the inclusion criteria. The synthesis culminated in a line of argument that patients endeavoured to be ‘free from disease’. People’s desire to live a life free from disease required nurturing their: (1) need to feel empowered (autonomy), (2) perceived ability to self-care (competence) and, (3) their need to feel a sense of belonging (relatedness). Conclusion: This review has highlighted that the majority of studies included in this review focused on the clinical aspects of managing a chronic condition and changing patient health behaviours. This suggests that there is a need for deep reflection on the current practice of caring for patients with a chronic illness. Exploring the lived experience has the potential to unravel the psychological and emotional needs of those living with a chronic illness.

BackgroundWhat matters to people in their everyday experiences of living with asthma is influenced by a diverse range of personal, social, medical and environmental factors. Previous reviews of the asthma literature have largely focused on medical aspects of asthma or specific population groups with particular needs.ObjectiveTo identify, describe and synthesize from the available qualitative literature the views and experiences of adults living with asthma.MethodWe systematically searched for qualitative studies reporting on the personal experience of living with asthma. A meta‐synthesis approach was used to analyse and interpret the data. Key themes relating to personal perspectives on asthma were identified and grouped into overarching concepts.ResultsWe identified 26 studies. There was a paucity of literature on the physical burden of asthma symptoms and the role of social support. Our synthesis generated a central concept of the “work” associated with living with asthma: work was of a personal nature, and at times an intensely emotional experience. Individuals tailored their behaviour in response to demands of the physical and social environment, including interactions with health‐care professionals.ConclusionThis is the first systematic review of the qualitative literature reporting on people's own perspectives of living with asthma. Our findings draw attention to the nuances and sensitivities surrounding patient experiences of self‐management. Medical care is a central plank of managing chronic conditions, but our health‐care systems are now expected to deliver patient‐centred care. Considering the broader aspects of asthma management, beyond that of symptoms and treatment, will help to facilitate comprehensive care.

This study provides insight into consumers' experiences and perceptions of self-reported MRPs following hospital discharge. Results highlight novel findings demonstrating the importance of consumer engagement in developing processes to ensure medication safety on patient discharge.