Living with severe asthma: the role of perceived competence and goal achievement

Abstract

Objective

The overall aim of this study was to examine, among individuals living with severe asthma, the role of perceived competence in achieving their goals.

Methods

Qualitative research methods were used to conduct in-depth semistructured interviews. Interviews were video and/or audio recorded, transcribed and analyzed inductively and deductively, informed by the self-determination theory construct of perceived competence. Thirty-six face-to-face interviews, lasting 1.5–4 h, were conducted across Australia.

Results

Feeling competent to achieve asthma goals played a role in participants’ ability to achieve broader goals. Their desire to achieve their broader goals was strongly driven by their perceived ability to master managing their condition, which at times required more than medical strategies. Two main themes were discerned from the analysis: (1) learning how to look after yourself: self-care is important and (2) reaching an agreement with severe asthma: being at one with the illness.

Discussion

This study highlighted the influence of perceived competence on self-management and goal achievement in severe asthma. Healthcare providers could explore patients’ perceived competence to set and achieve goals, as a self-management strategy. Future research should consider these findings when developing and implementing patient-driven, self-management interventions for those living with severe asthma.

Keywords

Severe asthma goal setting competence qualitative lived experience

Introduction

Competence is argued to be an important characteristic of ‘motivational drive’,^1,2 towards long-term conditions/chronic disease self-management and promoting goal setting. A key construct of self-determination theory is competence. The theoretical underpinnings of competence suggest that strengthening an individual’s ability to self-manage their chronic illness provides them with a sense of mastery and effectance, that is need to interact effectively with one’s environment, when responding to the complex challenges of achieving goals.^1,3,4 The term ‘competence’ is defined as a self-belief in one’s ability or capability to perform an activity or achieve goals.⁵ Within the healthcare literature, ‘perceived competence’ has been described as an individuals’ perceived ability to carry out their own self-care routines in order to manage their disease.^6,7 In asthma self-management, some studies have described competence in narrow terms as the confidence to accurately interpret symptoms and follow through with appropriate self-care.^8,9

Asthma is a chronic condition that affects approximately 330 million people worldwide with an estimated total healthcare cost in Australia approaching $27.9 billion a year.^2,10,11 While most people can effectively manage their asthma with treatment, between 3% and 10% of people with asthma experience uncontrolled symptoms despite being on high-dose treatment and are therefore classified as having severe asthma.^11,12 Severe asthma accounts for high morbidity and is estimated to contribute to half the healthcare costs associated with asthma.^13,14 A Canadian report identified the annual cost per patient with severe asthma to be 10 times more than for those with mild to moderate asthma and suggested that a broader paradigm of asthma management was needed.¹⁴

Much of the applied research on self-management of asthma focuses on clinical concepts such as improving lung function, symptom management and use of action plans and medications.¹⁵ In the past few years, there has been a great deal of research conducted into patients actively participating in their care and the benefits of self-management. One integral part of managing a chronic condition is setting goals.^16–19 The effect of goals upon behaviour has received much empirical attention.^20,21 Goal setting is defined as the process by which people set themselves goals and are motivated to work towards achieving them and has been recognised as an effective technique to help facilitate health-related behaviours and self-management.^22–24 However, there is a no published research around goal setting and achievement among those living with severe asthma.

Research has shown that strengthening a patient’s sense of perceived competence improves self-management,²⁵ quality of life^26,27 and satisfaction with patient–clinician goal setting and goal achievement.^6,7 This has been found across a range of chronic conditions including type 2 diabetes,⁶ respiratory²⁵ and cardiovascular disease.^25,27 However, despite the push for enhancing both patient and physician perceived competence to improve health outcomes,^7,25,28 it is important to note that people’s illness perceptions play an important role in influencing goal-setting behaviours.²⁹ Understanding illness experiences is key to uncovering the day-to-day physical, psychological and emotional challenges, people face to preserve their sense of competence to live well with their condition.

The increasing importance and popularity of strategies to support patient competence in healthcare,^7,30 combined with the paucity of studies of how people with severe asthma live with their condition,^31,32 highlights the need for research in this area. Thus, the overall aim of this study was to examine the role of perceived competence in achieving goals when living with severe asthma, based on in-depth interviews with adults with this condition.

Methods

A qualitative interpretative approach was chosen for this study because it can provide rich and deeply nuanced insights.³³ The research protocol was approved by the University of Sydney Human Ethics Committee (HREC 2015/934).

Patient recruitment

Participants were invited by their general practitioner (GP) or respiratory physician to take part in the study if they were 18 years or older and diagnosed with severe asthma by a specialist respiratory physician according to international guidelines.¹² The aim was to include participants from different ethnicities, geographical locations and sociodemographic backgrounds; interviews were offered in English, French or Arabic. All participants were provided with an information pack by their GP or respiratory physician and were asked to sign a consent form and complete a reply form if they agreed to take part in the interview.

Data collection and analysis

The data were collected between October 2016 and August 2018. In-depth face-to-face interviews were conducted in the participants’ homes, or elsewhere if preferred. Participants were asked to tell their own story from the point when they first noticed they had breathing problems. To begin with, they were encouraged to talk about their experiences of living with this condition, with as little interruption as possible from the interviewer. The interview schedule was initially developed from a systematic review of the literature and provided a guide for discussion.³¹ Prompts included questions about how they managed their condition and their goals. For this study, goals were defined as personal objectives³⁴ and desired outcomes.³⁵ An overview of the questions asked during the interview is included in Appendix 1.

Trustworthiness was ensured through respondent credibility, transferability, dependability and reliability.^36–38 During later stages of data collection, the constant comparison method of analysis was applied to continuously compare the experiences of participants and subsequent revision of the coding template.^39,40 Following each interview, field notes were written to initiate reflection. Interviews were audio and/or video recorded and transcribed verbatim. The transcribed data were then read several times, and in addition, the recordings were listened to once more to ensure the accuracy of the transcription. The transcripts were initially coded by the interviewer (DE) using NVivo software and were read by all authors of the research team. The researchers have experience in qualitative research (LS, KR and HR) and in the clinical aspects of severe asthma (HR).

A hybrid process of thematic analysis was used to interpret the data.⁴¹ This incorporated both a data-driven inductive and SDT informed deductive approach. The theoretical frame of SDT’s construct of competence informed the template of codes as a means of organising text for subsequent interpretation.^2,4 The initial stage of coding involved constructing a coding framework with reference to competence, personal abilities, capabilities and goals. Initial codes were grouped into categories according to similarities. Analysis and comparison across and within the categories were conducted to develop themes. This meant stepping into complex territory, in which the process of interpretation required a higher level of abstraction.⁴² Interpretation of the data is inevitably affected by the interviewer’s own values, beliefs, experiences and biases.^43,44 To counter potential biases data analysis was first carried out by DE and then independently checked by three other experienced researchers (LS, HR and KR). Pseudonyms have been used to protect the anonymity of the participants.

Results

Participants

Thirty-six interviews were conducted. A total of 19 women and 17 men, aged between 17 and 74 years, participated. All participants spoke fluent English and most agreed to be video recorded. The interviews were 81–235 (mean 147) mins in length. Sociodemographic characteristics are summarised in Table 1.

Table 1.

Characteristics of the participants (n = 36).

	N
Age range in years (mean)	19–74 (52.5)
Gender
Female	19
Male	17
Time since diagnosis of severe asthma
≤10 years	16
>10 years	20
Cultural identity
Caucasian (including Italian, German, Irish or British)	33
Asian	2
Persian	1
Geographical location
Metropolitan	21
Inner Regional	8
Outer Regional	7
Employment status
Employed	13
Retired	13
Unemployed	10

Findings

Analysis revealed that perceptions of goal setting and perceived competence to manage severe asthma were inextricably linked. It was apparent that the success of achieving broad life goals depended on meeting asthma goals (Figure 1). Achieving asthma goals was of prime importance to participants, mainly because these goals focused on basic physiological tasks such as breathing. Feeling competent to achieve asthma goals played a role in their ability to accomplish broader life goals such as being able to travel or spending more quality time with their family. Participants’ ability to achieve their asthma goals was strongly driven by their desire to master self-management of personal health. Two themes were discerned: (1) ‘learning how to look after yourself’: self-care is important (see Table 2) and (2) ‘reaching an agreement with severe asthma’: being at one with the illness (see Table 3).

Figure 1.

Conceptual diagram of the role of competence in self-management and goal achievement.

Table 2.

Additional quotes for ‘learning how to look after yourself’: self-care is important.

Self-care	Experiences
Taking medication	I've always been medicated … I kind of self-medicated a bit too, and I think I did there's a bit more of that … possibly not the right way to go about it … you're a bit of a self-manager … (Erica, 39-year-old female) I can rattle them off, I can tell you exactly what they are and what they do. Because when I was in hospital, they actually get me signed off so I can actually do my own meds. Because I'm faster at it, because I take so many, and I'm better at it cause the nurses used to kind of go, what is the Theophylline and, I'd go Theophylline, Nuelin … it's like it works on the smooth muscle in my lungs, so … (Jane, 55-year old female)That’s the big advantage [of taking medication] is being able to do anything, well to do what I can do. Go and swim, play golf, socialise, and being able to do it. Where before you probably wouldn’t be able to do those if you didn’t have those … . Being able to get yourself better and live. (Ben, 60-year-old male)no longer have my [reliever puffer] constantly attached with me [due to being on omalizumab]. I used to always have a [reliever puffer] with me … it has literally changed my life. I sat there on that last day not having had [reliever puffer], and I just burst into tears talking to a friend, and I’m like, I can have a normal life, I am going to be able to go and take my kids to the park. I’m going to be able to maybe go and work again one day. (Donna, 39-year old female)
Use of asthma action plans	I think having an asthma plan is crucial and that’s what I found coming back to [HOSPITAL] every 12 months, my asthma plan is monitored, the Doctors take into account um the previous 12 months experience. (Lachlan, 64-year-old male)I’ve always got puffers at hand, always, yes, and my Asthma Plan goes in the car with me everywhere … (Grace, 41-year-old female)
Avoiding triggers	… knowing what the triggers were and making sure I didn’t place myself in situations where a trigger would set me off … my main triggers these days are dust, animal hair, pollen, grasses, grass seeds, all the different types of grasses. I can’ think of one I’m not really allergic to, but smells, some perfumes will trigger you as I mentioned earlier, spices, cooking for a lovely Indian curry oh, disaster! I learned that the hard way. (Lachlan, 64-year-old)When I’m walking in the … in the spring … spring time I have to try and walk different ways if I know there’s things around because they can trigger the hay fever … and within a couple of days I will have asthma (Jennifer, 74-year-old female)Yea and then I learnt how to try and stay away from most of them [triggers]. Easier said than done with some things … If I stay away from paint fumes, and cats and then wood fire smoke, everyone’s got people got wood heaters around here so come in the afternoon I shut the house up until they’re well-lit and the smoke’s gone warm. And then when it rains, I’ve got to be careful when it rains. And when it’s too windy outside. Yea. As long as I keep an eye out on all of that I’m fine. (Grace, 41-year-old female)

Table 3.

Additional quotes for ‘reaching an agreement with severe asthma’: being at one with the illness.

Being at one with the illness	Experiences
More than being able to self-care	So, I’m my own best friend when it comes to asthma because if I don’t know how to look after myself then it’s no good, and that goes for any severe asthmatic, you have to know how to look after yourself. It’s no good having everybody else do it for you, it doesn’t work that way. You have to understand your asthma, you have to know when it’s getting bad and when you have to go to the doctor … (Phil, 67-year-old male)I think the big thing is, you get to know your own body after a while with asthma … it takes more time to recover from the incident or issue, so you can monitor yourself … as I said, you get to know your body after a while. (Lachlan, 64-year-old male)I could read it very well before hey but I can't now. I just and I'm as horrible as this is, I probably need to see what happens next time now to see whether I'm going to panic or I'm going to be responsible and look at my dot and try and get myself through it … (Jane, 51-year-old female)I hate being out of control there. Nothing worse than not being in control of your body, not being able to breathe there. So you do anything to- to-to try to fight it off, to-to avert it if you can. (Chris, 66-year old male)you have to be able … you have to be able to treat yourself, you have to be able to understand your asthma; if you don’t then you’re not going to be able to treat it properly. You have to treat it, the doctors can only give you the gear, you have to treat it. It’s not about them it’s about you and that’s my strong feeling on the fact anyway (Phil, 67-year-old male)
Being able to control their emotions	Don’t panic and fight it … don’t give up. If I can overcome certain hurdles a lot of other people can. I think but you need to be, and don’t accept the first thing that’s told to you … but don’t panic, don’t despair because there is something right for you out there. So you need to be need to keep your cool. Panic is the terrible thing. (Dylan, 65-year-old)Yeah, very disappointed. It [severe asthma] presents to me as physical weakness, uh, because of that it's, uh, it's less easy to do things that you-you plan to do and commit to do … there's a need to address that negative, effect on your mind because if you fully accept it … These things are needed though the-these mind shift to take you away from talking yourself from becoming bedridden and not enjoying life. (Freddy, 64-year-old male)
Constant self-negotiation of their own personal capacity to perform tasks	if it's well controlled and you don't put yourself in a situation where you're going to be at risk, that you can manage to get along with reasonably normal lifestyle I would imagine … you have to make conscious effort to think of the things that you can do. (Joseph, 70-year-old male)Severe asthma means you can’t perform at what your usual level would be like, if I did a gym workout, which I haven’t done today, which I only do when I’m finished here, but basically if I speed up the exercises and I get out of breath, just knocks it around and doesn’t allow me to do anymore, so it sort of impacts on the duration of the session and how much I can do and how quickly I can achieve my goals too which is very frustrating, because I know I’m physically capable of doing it, it’s just the asthma. (Jeff, 35-year-old male)But it was like six years apart and then the last six years have been really nasty. I’ve even been … because I had … six years ago I had to retire because of illness … So that sort of … and not being able to work, that was what I was thinking, is I can’t earn a wage. Now I’m only … I’m nearly 60 so I could work but I can’t. So, it means that we can’t do things I’d like to do. (Sarah, 59-year-old female)I learned the hard way that I couldn’t do all the things I wanted to do, particularly socialising, partying. You just learn what your limitations are and you work around it and it’s quite OK, you don’t miss out on much. (Lachlan, 64-year-old male)
Coping mechanisms	Well I sing in a choir when I can and that certainly helps, you know just a bit of breath control, certainly gets stuff moving if there’s stuff there. And generally, it makes you feel a lot better … You know, you’re breathing and it just makes you feel much better … (Lisa, 60-year-old female)Yeah, it's important [to meditate]. Because the mindset, the mind's much more powerful than the body. It'll tell you to do things you might not even be consciously aware but you've got to get the right mindset. (Freddy, 64-year-old male)

Theme 1: ‘Learning how to look after yourself’: self-care is important

Feeling competent in achieving personal asthma management goals was valued and deemed an important enabler to achieving asthma goals. Taking medications was perceived to give people with severe asthma a sense of effectance in managing their asthma. Medications such as salbutamol (an inhaled quick-reliever medication, e.g. Ventolin™) and/or oral corticosteroids (prescribed for short-term treatment of serious attacks, and, for some patients, used long-term to help prevent serious attacks albeit with potentially serious side-effects) at times provided a sense of security and necessity to accomplish their goals. For example, Jane reported that her reliever inhaler was on her at all times irrespective of what she was doing that day:

… the rules [her personal rules] are I have to have the [reliever] puffer and spacer in my hands all the time, if I get up to move. So, if I get up from a bed to go to the toilet I have to carry the [reliever], the spacer. (Jane, 51-year-old female)

Individuals reported that if these medications were misplaced or not on them at all times, they felt unsettled and less confident about their ability to self-care. Teresa reported panicking if she left her house without her reliever medication. She would always ensure she was prepared:

… I've got backups … I've got them at my mum's, I've got them in the car, I have them at home. If I go to the doctor’s, she's already got them set anyway … she knows that I'll panic about it and all the rest of it. (Teresa, 39-year-old female)

Individuals also described the importance to them of taking more than the prescribed dose of their medications (e.g. salbutamol and oral corticosteroids) to achieve their tasks and perform day-to-day activities:

I will admit that … I'm talking a lot because I’m up the Prednisone to make sure that I'm able to do this [the interview] because normally for me talking this long just, it wouldn’t happen … (Jeff, 35-year-old male)

While asthma medications, particularly oral corticosteroids, have side effects that can be serious, this did not appear to limit participants’ decisions to alter the dose or stop their treatment. For example, Chris reported that prednisone has ‘destroyed’ his eyes, nose, thinned his skin and given him the shakes; yet he continues to take more to manage his asthma to achieve his asthma goals of feeling in control:

I said before, it’s [severe asthma] a life changing thing, a life controlling thing … I hate being out of control … I probably wrecked me [sic] life … taking too much Prednisone … I take lots of medication, more than I need … I’m very fearful of having another real severe attack again. (Chris, 66-year-old male)

For patients who had been commenced on biological treatments (at the time of interview, omalizumab or mepolizumab), most were enabled to re-gain a sense of competence to complete activities which they never thought would have been possible:

[Omalizumab] made a huge difference to my life … I could go most of the day without having to use [reliever puffer]. It was absolutely incredible. I had to remind myself to take it with me … It's made a huge difference mentally as well as physically, feeling like you can participate in more things … (Charlotte, 52-year-old female)

For one patient, however, a biological therapy [mepolizumab] aggravated her asthma flare ups and was associated with pain in her back, fingers and feet, which thwarted her ability to achieve her asthma goal of being able to breathe without feeling pain:

… [I want] it [breathing] not to hurt … I had it [biological therapy] once a month. I only had two and I had four exasperations [sic] yeah … like this new fantastic drug that works on everyone didn’t work so now we’re trying this other drug … (Jane, 51-year-old female)

Asthma action plans were considered an empowering tool to facilitate goal achievability. These plans were individualised and provided instructions on how to adjust medications in response to asthma symptoms; they were used to help a person with asthma to take early action to prevent or reduce the severity of an asthma flare up. Participants reported that having an asthma action plan helped develop their sense of competence to manage their condition. Freddy described the importance of having an asthma plan because of the lack of services and support around him. He described having to heavily rely on his action plan to manage his asthma which, in turn, enables him to focus on life goals:

You're merely attempting to manage a potentially debilitating, and-and a potentially fatal disease … preferably have an effective asthma plan that, you know, will work from a specialist that you adhere to strictly on a day to day basis. But, with it's not a thing that's designed to inconvenience you. It's something that will help you to maintain a normal, average lifestyle. (Freddy, 64-year-old male)

Theme 2: ‘Reaching an agreement with severe asthma’: being at one with the illness

In addition to being adherent to treatment and relying on their asthma action plan (self-care), participants expressed that they required more than medical strategies to feel competent to self-manage. They felt they needed to be more self-aware of their illness. For some, competence was expressed as their ability (1) to self-manage and (2) to feel at one with their illness. This required transitioning from focusing on their needs as defined by the illness, to learning how to understand their body and integrate the illness into the context of their lives and broader goals.

Perceived competence to self-manage

Participants described the experience of ‘owning their body’ as a crucial component to being at one with their illness and feeling competent to self-manage to achieve their broader life goals:

I would be defined by my asthma if I didn’t respect the fact it is part of my life and I didn’t do anything to look after it. It would then dominate my life, because I would then be getting sick, so you find the things that work for your asthma and you get on and live life as anyone else does. It just so happens you’ve got asthma. (Lachlan, 64-year-old male)

For others, the struggle to understand their body and achieve their asthma goals led to feelings of frustration and discouragement:

I don’t understand asthma … it’s a bit depressing, Don’t want to admit it but … . everything’s just a struggle … there’s been a lot of changes but it’s all out of, out of my control. There’s nothing that I can do to, to fix it [fixing his asthma and being able to breathe] … (Archie, 58-year-old male)

Participants, who reported feeling competent, felt able to manage their condition and its associated physical and psychological effects. Being able to understand their personal limits and able to control their emotions, such as panic during an asthma flare up, made them feel able to manage their condition:

Sometimes I could be just sitting in a conversation and I’ll suddenly think, gosh, but I just don’t do anything, and I hope it’ll pass and usually it does. Because the worst thing you can do is panic. That’s what I’ve learnt … it’s always mind over matter and you’ve just got to try to be calm all the time … (Sara, 71-year-old female)

Fear of simply being unable to breathe was perceived as a barrier to achieving psychological ownership of one’s body. Participants described having to exercise a host of mechanisms that included meditation to reduce the potency of their fear and renew their sense of ownership:

… stress can actually trigger asthma, so again, if you can calm down through meditation and meditation doesn’t have to be sitting quietly going “ohm” with your fingers like that … just taking yourself away from that position of stress or the thing that’s triggering you … (Ben, 60-year-old male)

Efforts to self-manage required acceptance of their perceived level of competence and constant self-negotiation of their own personal capacity to perform tasks. For example, Jeff’s goal was to develop muscle strength; however, despite being aware that his severe asthma might flare up, he would still push his own personal limits:

I was hurting [after going to the gym] and we were stopping because of my asthma playing up or my muscles were going wrong … I think it’s a big part of the fact that it’s my body getting stronger, but it’s also the condition going well “we know you’re getting stronger, but-” it’s sort of working against it … Sometimes I push myself too far, because I know “I know I can do it!”. (Jeff, 35-year-old male)

Jane reported that she had to adjust to her condition and accept her diminished sense of competence. She described enjoying doing things herself; however, it has come to a point where her asthma has taken control:

I'm a very stubborn woman and I like to do things myself … I was cooking and I was yeah. I said no I feel great. He'd [carer] been gone an hour or an hour and a half or something and I thought geez I'm not well so I went to bed … I lay down and the next thing bang I was down and I had no-one. I couldn’t ring for help; I couldn’t do anything. (Jane, 51-year-old female)

The inner conflicts of learning how to understand their body came at an emotional and physical cost. Participants described having to find different strategies such as accomplishing goals at a slower pace:

I feel that the condition impacts my life goals on how quickly I can achieve the goals that I set out and how fast I can actually knock off each individual item … which is very frustrating, because I know I’m physically capable of doing it, it’s just [my] asthma … (Jeff, 35-year-old male)

Perceived competence to feel at one with their illness

Being in and out of hospital due to the unpredictable nature of severe asthma at times eroded participants’ perceived competence to manage their condition. For some, being admitted to hospital on a regular basis left them feeling defeated by their condition. So, the constant challenge of being unable to predict the next exacerbation left them feeling unable to understand their body and accomplish goals. Donna’s life goal was to complete a degree at university but her uncontrolled asthma prevented her from achieving it at that time:

… that [asthma] limited me to what I wanted to do because I had to face the embarrassment of that [breathlessness] … also, by the time you did something, you were exhausted, running with sweat, because you’ve had so many asthma attacks … I pretty much was in and out of hospital … I wouldn’t have the attendance required because of my hospitalisations and also there were days I wasn’t going to be well enough … (Donna, 39-year-old female)

Time since diagnosis emerged as a defining influence in achieving goals and perceived ownership of their body. Narratives of perceived competence to self-manage also varied depending on participants’ illness trajectory and their life context. These experiences varied from inherently describing a loss of competence to developing a sense of competence by learning how to master challenging situations given their previous experience. A perceived loss of competence was prominent among those diagnosed with severe asthma for fewer than 10 years. Archie described that before being diagnosed with severe asthma, he used to compete in weight lifting competitions. Since his diagnosis, he has struggled to maintain his physical activity and as a result described a loss of competence:

… instead of doing, ah doing the gym and we were really fit and my son and I were right into it, now it’s just go do the basic in the gym just to stay, so you don’t lose all your muscle and, because you can’t do the cardio and physical work anymore … I’ll sit, sit on the couch and next thing I’m back at, falling asleep again … it’s just a struggle just, just to get through the next hour … (Archie, 58-year-old male)

Lachlan lived with severe asthma for most of his life, and he stated not being able to do the things he would like to do. He reported having to work around his limitations and listen to his body:

I couldn’t do all the things I wanted to do, particularly socialising, partying. You just learn what your limitations are, and you work around it … you learn quickly and if you want to, you cannot listen to your body and its needs or you’ll cause enormous problems, I don’t want to do that, I didn’t want to do that and why would anyone? So, as I said, you get to know your body with something like asthma. (Lachlan, 60-year-old male)

Discussion

The purpose of this study was to examine the role of perceived competence in achieving goals among individuals living with severe asthma. To the authors’ knowledge, this study has provided the first insights into the role of perceived competence in self-management and goal setting for people with severe asthma. Overall, our findings revealed that the success of achieving competence in life goals depended on meeting asthma goals.

The need to feel competent in self-management was a necessary driving force for goal setting and achievement. Interviewees who reported diminished feelings of competence in managing severe asthma felt unable to set and achieve asthma and broader life goals. These findings parallel Ryan and Deci’s proposal that an individual’s competence can facilitate intrinsic motivation, while diminished feelings of competence serve to restrict it.⁴⁵ Studies reporting on patients perceived competence and goal setting have focused on designing and implementing strategies to enhance patient competence to self-care in order to improve health outcomes.^9,30,46 For the participants in our study, however, one of the key components to feeling competent to manage their condition was their ability to self-care, including taking medications. Research pointing to poor medication adherence has often been published in the asthma literature, with rates of poor adherence among patients ranging between 30% and 70%^47,48. Much of the research focuses on identifying ways to improve adherence to therapy for those living with asthma.^49–51 However, our study shows that those living with severe asthma have expressed being adherent to treatment and at times taking a higher-than-recommended dose of their medications (salbutamol and/or oral corticosteroids were specifically mentioned) despite experiencing serious side effects. Novel monoclonal antibody therapies have been shown to have a positive impact on health-related quality of life for patients with severe asthma.^52,53 Our findings suggest that for many patients these medications enabled them to accomplish their broader life goals; but a couple of patients reported adverse effects from biological therapy that thwarted their ability to achieve even their asthma goals. Another self-care behaviour reported in the literature is the use of asthma action plans. Several studies have reported that asthma action plans tend to be under-used by patients with asthma or not offered by healthcare providers.^8,54,55 In contrast, our study participants with severe asthma reported that having an asthma action plan enhanced their sense of competence to manage their condition.

While research has shown that, for patients’ living with symptoms such as breathlessness, feeling able to manage their symptoms was influenced by their coping style and help-seeking behaviours.⁵⁶ Our findings, however, have highlighted another key component to feel competent in managing symptoms. For people living with severe asthma, being able to manage their condition was influenced by their ability to feel a sense of psychological ownership over their condition. Participants expressed the importance of being able to integrate the illness into their lives and feel at one with their illness. Psychological ownership has not been studied extensively in the healthcare literature. Feeling at one with their condition has been described as a complex state comprising self-awareness, thoughts and beliefs.⁵⁷ Sensations of fear and panic contributed to the disruption of the sense of bodily ownership. Participants described having to enlist strategies to reduce the potency of their negative emotions and develop their sense of bodily ownership. The experience of owning an illness is rooted in the idea of control.⁵⁷ The time since being diagnosed emerged as a defining influence in perceived control of their body. Those who have lived with this condition for more than 10 years reported being able to understand their body emotionally and physically with greater acuity. Looking at the narratives of people’s experiences of living with severe asthma, through the lens of competence, potentially furthers our understanding of the psychological efforts required to manage this condition.

Strengths of the study include its rigorous qualitative methodology, including the use of a theoretical frame of reference, and incorporating both an inductive and deductive approach to analysis. In addition, the authors discussed the analysis to compare and challenge individual interpretations. The authors frequently discussed the analysis to compare and challenge individual interpretations. A limitation of this study is that our participants did not encompass the ethnic diversity in the Australian population but had a similar Caucasian predominance as the Australian Severe Asthma Web-based Database, in which 85% of patients registered were Caucasian.⁵⁸ 

Practice implications

For people living with severe asthma, the need to feel competent to achieve asthma goals was a necessary driving force to achieve broader goals. Healthcare providers should discuss with their patients what goals are important to them and their perceived ability to achieve these goals. This can be used to understand how people living with severe asthma manage their condition and their level of perceived competence. For example, perceived competence may affect how people take their medication, interpret their symptoms and communicate with their healthcare providers. This may provide insight into the psychological impact of living with this condition. In light of these findings, therapeutic guidelines could be reviewed to include more holistic self-management strategies. This study supports the need for deep reflection on the current practice of caring for patients with severe asthma. Identifying patient perceived competence for achieving asthma goals has the potential to unravel unmet psychological and emotional needs. Future research should consider these findings when developing and implementing patient-driven self-management interventions for those living with severe asthma.

Conclusion

This study has advanced our knowledge in understanding the complex dynamics of patient perceived competence in self-management and ability to achieve goals. Our study has shown that the success of achieving goals depends on patients’ perceived competence to manage their illness. Given that the majority of research aimed at developing policy and practice for severe asthma describes the need to promote self-management, our findings suggest that this is broader than the conventional concept used in the asthma literature. In addition to symptom management and adherence to treatment, self-management also includes the ability to achieve psychological ownership of the illness.

Footnotes

Acknowledgements

We would like to thank all participants and the healthcare providers involved in recruitment.

Contributorship

LS, HKR and DE designed the study. DE conducted the data collection. The initial coding was undertaken by DE, LS and KR. All authors were involved in the finalising work of the analyses, and DE made the final write-up of the manuscript. All authors read and approved the final manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval

The research protocol was approved by the University of Sydney Human Ethics Committee (HREC 2015/934).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded through a Seed Grant from the National Health and Medical Research Council Centre for Research Excellence in Severe Asthma, Australia.

Guarantor

Informed consent

Written consent was obtained from patients for their anonymised information to be published in this article.

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