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.

The increasing importance and popularity of supporting autonomy in health care, 25,26 combined with the paucity of exploratory studies of experiences of living with severe asthma, highlight the need for research in this area. Thus, the overall aim of this study was to explore the role of autonomy in patients' narratives about their experiences of living with and managing severe asthma. As autonomy can be expressed in many forms, we looked for when instances of volition, exercising autonomy and resisting external sources of control (or not) occurred.

| Study design
A qualitative interview approach was chosen for this study because it can provide deep insights and offer rich sources of information. 27 The research protocol was approved by the University of Sydney Human Ethics Committee (HREC 2015/934).

| Participants
Potential participants were invited to take part in the study through their general practitioners or respiratory physicians. The aim was to include participants from different ethnicities, geographical locations and sociodemographic backgrounds. They had to be ≥18 years and diagnosed with severe asthma by a specialist respiratory physician. A trained qualitative researcher (DE) conducted the interviews.
TA B L E 1 Semi-structured interview guide-sample questions 1. Can you take me back to your first memory of having breathing problems?
2. Do you remember the early days of living with severe asthma (SA)? Tell me about that. 3. What was your reaction to getting a diagnosis of SA? How did you feel about receiving this? 4. What have your experiences been of telling family/friends/ colleagues that you have SA?

5.
To what extent has living with SA impacted on your life? Tell me about a couple of instances of how this impact has affected your life. 6. Where or from whom do you find you get the most support?
7. What does "support" mean to you?
8. What has your experience been of the medications you have had to take for SA? 9. Tell me what happens when you go to your Dr? 10. How is it decided on what medication/treatment you get? 11. How has the distance geographically been a problem in terms of accessing services?
12. What does "severe asthma" mean to you? 13

| Data collection
The researcher conducted the interviews in the respondents' homes, or elsewhere if preferred. Interviews were collected be-

| Data analysis
Data analysis was conducted using a hybrid method of thematic analysis, incorporating both data-driven inductive and SDTinformed deductive approaches. 14,15,28 The SDT construct of autonomy informed the development of a template of codes as a means of organizing text for subsequent interpretation. 28 The This required stepping into more complex territory whereby themes were discerned from the conceptual codes as well as from relationships between the codes. 30 The interpretive analysis was then reviewed by researchers with experience in qualitative research (LS, KR and HR) and in the clinical aspects of severe asthma (HR).

| RE SULTS
Overall, 205 participant information packs were sent to respiratory physicians and general practitioners to distribute to their eligible patients: 41 reply forms were sent back to the researcher (DE).
Twenty-nine interviews were conducted as of May 2018 ( Figure 1).
Most of the participants agreed to being video-recorded. The interviews were 81-232 (mean 155) minutes in length. Our analysis revealed two themes illustrating the ways in which autonomy was enacted, or challenged, in people's experiences of living with severe asthma. These were as follows: (a) the desire to live an "unconstrained" life; and (b) preserving self-identity ( Figure 2). autonomy: first, through their interactions with HCPs; and second, through their desire to maintain employment. Whilst avoiding triggers and adhering to medications helped to provide a sense of control over severe asthma for some participants, for others different aspects of their lives were more highly valued.

| Health-care interactions
Asserting autonomy to preserve these, despite the potential health problems that might arise as a result, was evident. For example, Grace reported that her specialist told her not to keep her pet budgerigar (native Australian bird). However, for her this was not an option, as the budgie was part of her family: I was told that I was to not have budgies because they carry bird fancier's disease. Yeah but his cage gets kept clean and he runs the house. So, what my specialist doesn't know won't hurt me. The need to feel recognized by one's doctor as an expert on living with severe asthma was also valued, as was having an equal partnership. Mel expressed that her doctor would become "aggro" every time she was hospitalized due to her asthma, and he suggested that she should go into a nursing home. She felt that her views were not considered, and one way of exercising her autonomy was to "train" her doctor:

| Employment
Maintaining employment whilst living with severe asthma was a highly valued aspect of life, but the debilitating effects of the condition were a constant threat to people's capacity to work.
Many examples emerged of participants pushing their physical limits, improving fitness, planning ahead, and resisting perceived controlling efforts by others. These autonomous actions helped to preserve a sense of productivity and contribution to society and maintained social ties. Sometimes severe asthma "won," and employment was no longer an option. Dylan reported that there were days he should have stayed home due to his condition, but he decided to push through and go to work:

| Preserving self-identity
Autonomy was enacted and challenged at times to preserve "selfidentity." For some, having their identity embedded within the illness provided periods of psychological vulnerability and loss of personal control. This was often due to severe asthma challenging the unity between the body and self. At times, participants described that | 533 EASSEY Et Al.
when they felt their identity confronted by the illness they would "push back" to limit the effects of the illness on self. Self-identity was represented by being able to maintain valued roles, preserve their sense of "normality," or for some, search for a "new normality.".

| Searching for normality
Receiving the diagnosis of severe asthma was overwhelming and challenged participants' autonomy and sense of identity. Participants recounted working towards preserving parts of their life that had preceded the diagnosis of severe asthma, including engaging in activities and socializing. Exercising autonomy was tied up with acquiring a sense of volition and preserving a sense of "normality." Jane described that, prior to being diagnosed with severe asthma, she defined having a "normal" life as being an active person, enjoying the outdoors and being independent: I was living like normal…. I used to dance. I used to pick fruit. I used to mow lawns. I used to be able to take care of myself.
Since being diagnosed with severe asthma, she described struggling to define her identity. However, one way of exercising her autonomy was by being realistic and, rather than surrendering to the illness, preserving normality by doing things at a slower pace: I'll be realistic …being able to travel, to be able to go fishing, being able to cook around the campfire, being able to look after myself, still being able to help people that's been a big thing for me and I've lost that…I've got to do something whether it be you know I might try to cook dinner and fail at it but if I don't try, what am I going to do? Sit here and mourn away.
(Jane, 51-year-old woman) Autonomy was also enacted when trying to search for a new normal.

| D ISCUSS I ON
The purpose of this study was to examine in depth the role of autonomy amongst those living with severe asthma. To the author's knowledge, this study has provided the first insights into the role of autonomy in people's experiences of living with this condition.
We argue that autonomy was challenged and enacted in efforts to: (a) live an "unconstrained" life: this was influenced by participants' interactions with HCPs and desire to maintain employment; and (b) preserve self-identity: participants sought to maintain their valued role and strived for "normality." In the words of Dworkin, 31 autonomy means endorsing one's actions at the highest level of reflection; this is one of the main defining aspects of autonomy in SDT. It is crucial to autonomy that individuals feel that they can raise questions and identify or reject reasons for which they will act upon a decision, with no external influences such as manipulation or pressure from anyone else. 31 Our findings highlight the challenges people living with severe asthma face to preserve their autonomy to live an "unconstrained" life. One such challenge was how individuals described the importance of having a sense of choice over being told what to do, and feeling heard by their HCPs. Previous research has also uncovered various threats to autonomy such as HCPs' often paternalistic approach to treatment, both in severe asthma 24 and in chronic illness in general. 32 Similarly, patients with other chronic conditions also appreciate when HCPs support their personal autonomy. 33 Naik et al 34 expanded the concept of autonomy and recommended strategies to support patients who struggle with "executive autonomy"-the capacity to carry out treatment plans. Self-determination theory research has highlighted the importance of supporting patient autonomy in health-related decisions. 9,12,13,19 According to Deci 45,46 reported that anxiety was 1.4 times more common, and depression 3.3 times more common, in people with severe compared with non-severe asthma.
Our findings highlight that, despite challenges to autonomy, patients had a strong desire to preserve their identity. This resonates with the work by Corbin and Strauss, 47 Bury 48 and Charmaz 49 on biographical disruption, where they describe that living with a chronic illness assaults the body and disrupts a sense of wholeness of self.
Our study highlights that for some, in the context of biographical disruption, the onset of severe asthma brought about a "major kind of disruptive experience." 48 For others, however, it triggered autonomous actions to preserve or reconstruct their identity as a means of reorientating their lives. Furthermore, enacting autonomy by incorporating severe asthma fully into their identity was a way to maintain or reset normality. Moreover, looking at the narratives of people's experiences of living with severe asthma through the lens of autonomy has the potential to further our understanding of the complex ties between the experiences that embody the shifts in identity and the psychological efforts required to unite the body and self.
Preserving the "self" in severe asthma becomes harder when there is a constant struggle to fight the debilitating physical effects of the illness and side-effects of its treatment, and the identifications that come with the diagnosis. When trying to maintain and preserve "self" in the face of illness, individuals acknowledged the emotional cost associated with their efforts in preserving "normality." Previous quantitative and qualitative researches on patients' experiences with severe asthma note that its debilitating and unpredictable symptoms, the side-effects of treatment and the burden on their quality of life can ultimately have emotional consequences, 41,50,51 but there is a lack of in-depth psychological research furthering our understanding of how people living with severe asthma perceive their condition and how they behave when challenged in a range of situations. Our findings attempt to broaden and challenge the