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.

Patients' experiences of asthma exacerbation and management: a qualitative study of severe asthma

“…Our findings primarily add to understanding of Korean patients’ perspectives on severe asthma and frequent exacerbations, and raise awareness in healthcare professionals about the patient's point of view. However, our findings are also applicable to patients with severe asthma worldwide, as most of the themes identified, such as experience of exacerbation, impact on life or OCS issues, are commonly observed in previous studies from other countries [ 8 , 10 , 11 , 15 ]. Meanwhile, the degree of a patient's understanding of severe asthma and its future risks (theme 4) may differ by population or healthcare system, but to our knowledge, such regional difference has not been well addressed in the literature.…”

“…Exacerbation is associated with the future risk of exacerbation, leading to progressive decline in lung function and health status of patients with severe asthma [7]. In the literature, several qualitative studies have described the experience of patients with severe asthma [8][9][10][11][12][13][14][15]. However, very few have focused on the patients" experience of asthma exacerbation and the experiences that may lead to reliance on OCSs, particularly none in Asians.…”

“…Exacerbation is associated with the future risk of exacerbation, leading to progressive decline in lung function and health status of patients with severe asthma [ 7 ]. In the literature, several qualitative studies have described the experience of patients with severe asthma [ 8 – 15 ]; however, very few studies, and none in the Asian population, have focussed on patients’ experience of asthma exacerbation and the experiences that may lead to reliance on OCSs. Therefore, this qualitative study was conducted to examine the experience of Korean patients with severe asthma, with a focus on asthma exacerbation and OCS treatment.…”

The capacity of schizophrenia and bipolar disorder individuals to make autonomous decisions about pharmacological treatments for their illness in real life: A scoping review

“…A range of factors such as interactions with health‐care providers and symptom management challenge patient autonomy across a variety of diseases 45 . Preserving independence and privacy and dealing successfully with threats to self‐identity may enhance patients' autonomous decision making.…”

Evaluation and Management of Difficult-to-Treat and Severe Asthma: An Expert Opinion From the Korean Academy of Asthma, Allergy and Clinical Immunology, the Working Group on Severe Asthma

“… 22 Moreover, quantitative studies reported that exacerbation of asthma and long-term OCS-use negatively impacted professional life and made maintaining a normal life challenging. 23 …”