Abstract
People with severe asthma are thought to face a sizeable daily disease burden. This study aimed to explore the little-known life experiences of people living with severe asthma.
Adults with severe asthma were invited for telephone interview. Semistructured interviews were conducted until no new themes emerged. The 25 interviews were recorded, transcribed and analysed thematically.
Four themes emerged. 1) “The body as a hindrance”: severe asthma placed broad limits on life from daily chores to career, relationships and family life that left interviewees feeling emotionally distressed. 2) “Burden of treatment”: participants mostly accepted the need to take treatment, but were particularly concerned about side-effects of oral corticosteroids. 3) “Alone with asthma”: interviewees felt misunderstood and alone in their experience of breathlessness and frightening exacerbations; practical and emotional support needs were often lacking and the emotional distress of severe asthma was amplified in those with little support. 4) “Striving to adapt”: patients used both positive strategies (acquiring self-management skills) and less positive strategies (avoidance of physical exertion) in the process of adjustment to living with severe asthma.
Severe asthma imposes long-term, debilitating burdens and should be considered differently to milder disease. There is an urgent need to improve practical and emotional support services for patients and their carers.
Abstract
Severe asthma imposes long-term, debilitating burdens requiring additional support services for patients and carers http://ow.ly/grpE30db5FR
Introduction
I have lost in every facet of my life. You know, my earning capacity, my self-esteem, my sense of achievement, my relationships. You name it, it's been there. And my asthma has been this severe all of my life. (Rhonda, female, 54 years)
Asthma is one of the most common chronic conditions worldwide. For most patients with asthma, symptoms can be well controlled and exacerbations prevented with inhaled therapy. However, an estimated 5–10% of patients have “severe asthma”, which is defined by the presence of persisting symptoms, airflow limitation and/or exacerbations despite high-dose conventional treatment, or that is only well controlled during high-dose treatment; it is thus often referred to as “severe refractory asthma” [1]. Specialist assessment is required for its diagnosis, since uncontrolled asthma can also be caused by problems such as misdiagnosis, incorrect inhaler technique and poor adherence [2, 3].
Severe asthma is heterogeneous in its characteristics and causes, but quantitative data indicate that people with severe asthma face a consistently heavy burden with daily symptoms such as cough and dyspnoea and frequent exacerbations often requiring hospitalisation compared with patients with milder disease [4–7]. Patients are usually prescribed high-dose inhaled corticosteroids, often with additional short- or long-term oral corticosteroids [7]. These treatments carry the risk of adverse effects that have varying impacts on patient quality of life and health status, including weight gain, sleep disturbance, depression and osteoporosis [8].
Little is known about the life experiences of people with severe asthma [9–12]; however, given the high symptom burden and the failure to adequately respond to conventional treatment, patients' experiences are likely to be different from those of patients with milder disease.
The aim of this study was to explore, in patients' own words, their personal experiences of life with severe asthma. Qualitative methodology is indicated for this type of research as it provides a level of contextualisation and immersion in the individual's life experience that facilitates understanding [13]. We aimed to describe the emotional and practical burdens of severe asthma, and to identify support needs to help health professionals and policy makers be aware of and respond to the needs of people with severe asthma.
Material and methods
Study design
This was a qualitative study of the experiences of adults with severe asthma, utilising in-depth, semistructured interviews.
Recruitment and selection
Participants with severe asthma aged ≥18 years were identified via the AustralAsian Severe Asthma Research Registry (established by the AustralAsian Severe Asthma Network). For entry into the registry, participants are required to have satisfied guideline-based criteria for severe asthma [1]. As the Registry did not include patients from all areas of Australia, we also recruited participants via respiratory specialists involved in managing patients with severe asthma and provided them with a letter summarising the guideline-based criteria (supplementary material A1). Patients were excluded if they were participating in an intervention study, an observational study involving more than one study visit or had finished an intervention study <12 months ago. The treating physician provided the patient with written study information and a consent form; the patient contacted the study coordinator to indicate their interest. Patients who completed and returned the consent form provided basic demographic data by telephone to facilitate purposive sampling, which aimed to achieve diversity in terms of age, sex, socioeconomic status and geographic location (state).
Data generation
The demographic data collected prior to the interview included currently prescribed respiratory medications, age at asthma diagnosis, number of asthma-related emergency department visits and hospital admissions in the last 12 months, smoking status (Do you smoke?/Have you smoked in the past?), living status (Who lives in your household with you?), age, sex, postcode (to establish location and estimate socioeconomic status) and symptom control by the Asthma Control Test [14].
All interviews were conducted by telephone by J.M.F. and were audio recorded. Participants were assured that the interview would be kept strictly confidential. Our interview guide (supplementary material A2) aimed to explore: 1) the impact of severe asthma on the quality of life of patients and their family/friends, 2) day-to-day management of severe asthma and its challenges, and 3) experience of exacerbations. Field notes were taken immediately after each interview to record emergent themes, the situational context and/or new topics for follow-up in subsequent interviews. Using an iterative process, we revised the interview guide after the fourth interview to include two new items that had emerged as important: 1) childhood experiences of asthma and 2) a typical day with asthma (supplementary material A2). Interviews continued until no new themes emerged.
Analysis
Recordings were transcribed verbatim, and the transcripts were anonymised and entered into NVivo version 11 (QSR International, Doncaster, Australia) to aid data management and coding. We analysed the data thematically beginning with familiarisation (reading/re-reading transcripts, field notes) and analytic memoing [15]. J.M.F. performed initial descriptive coding, which later progressed to inductive pattern coding and synthesis of data into themes and subthemes [16]. Themes were repeatedly checked to ensure they represented the content of the interviews. The analysis was carried out iteratively, as each new interview was completed. Cross-case comparison and charting/mapping were applied to assist interpretation, and negative evidence and rival explanations investigated. To enhance the rigour of the analysis, an audit trail was constructed [17]; two co-authors (J.M.F. and H.K.R.) met regularly to discuss each step of the analysis and themes were discussed frequently with other clinical colleagues.
Ethical considerations
The University of Sydney's Human Research Ethics Committee approved the study protocol (2014/486). All participants gave written informed consent.
Results
Participants (n=25) from a wide geographic distribution (age range 23–81 years; 68% female, 48% living in a socially disadvantaged location) were interviewed (table 1). Many reported experiencing debilitating symptoms including shortness of breath, chest tightness, cough and interrupted sleep, in a pattern of either daily symptoms or a combination of good and bad symptom days, together with sudden-onset attacks (supplementary material A3).
Participant demographics
Four themes (summarised in tables 2–5 with additional detail in supplementary material A4) described the main results: “The body as a hindrance”, “Burden of treatment”, “Alone with asthma” and “Striving to adapt”. Illustrative quotes are presented with a pseudonym, sex and age of interviewee.
Theme 1: “The body as a hindrance”
Theme 2: “Burden of treatment”
Theme 3: “Alone with asthma”
Theme 1: “The body as a hindrance”
Participants described hindrances that were “Personal” (predominantly impacting the self), “Interpersonal” (concerning interaction with others) and “Extrapersonal” (affecting the participant's inclusion in wider society). The burden of these hindrances tended to mirror the pattern of the participant's asthma symptoms, from persistent, daily limitations to symptom-free many days a year. See table 2 and supplementary material A4.
Personal hindrances
Participants described many physical limitations of severe asthma, such as the inability to perform even simple household chores, walk far or uphill, or engage in pleasurable activities that required exertion (e.g. sports). They also described loss of spontaneity or independence. Personal hindrances commonly had emotional consequences, with interviewees feeling worthlessness, hopelessness, frustration or self-directed anger.
Interpersonal hindrances
Asthma restricted the social lives of participants, with some friends or family taking offence and no longer inviting people with severe asthma socially. Intimate relationships suffered. Interviewees were unable to pursue normal activities, including sex, sometimes resulting in relationship breakdown:
He loves camping but I can't go where you can't get phone reception. And the sex [is unattractive due to shortness of breath] … And yeah that relationship, it's gone to crap [sic]. (Casey, female, 48 years)
Participants who were mothers or fathers missed out on desired interactions with their child due to the inability to lift the child or run. Interpersonal hindrances left interviewees feeling loss, guilt, anger or resentfulness, and their support needs meant family, most often partners, were burdened by additional household and financial responsibilities, at times requiring them to miss work.
Extrapersonal hindrances
Career was impacted including ineligibility for certain professions, poor work attendance due to illness or inability to perform certain tasks. Some had to change their occupation, usually reluctantly, to something more suitable for their asthma or give up work completely, resulting in a loss of cherished social interaction and/or support from colleagues.
Theme 2: “Burden of treatment”
The subthemes “Ambivalence about treatment-taking” and “Oral corticosteroid adverse effects” represented treatment burden. See table 3 and supplementary material A4.
Ambivalence about treatment-taking
Interviewees mostly accepted the necessity to take inhaled reliever and preventer therapy, but they disliked the feeling of reliance on it. Some felt inconvenienced by attending regular appointments for injectable biologicals, and the time-consuming and restrictive nature of daily treatment-taking meant that others felt like treatment took over their lives:
You're a slave to this regimented ordeal you've got to go through every day. (Larry, male, 54 years)
Oral corticosteroid adverse effects
Many were concerned about current and future severe side-effects of oral corticosteroids (e.g. cataracts and osteoporosis) and some experienced serious severe effects such as avascular necrosis or Addison's disease. Female interviewees particularly expressed embarrassment or unhappiness about side-effects that changed their physical appearance:
I'm embarrassed [about the weight gain] ‘cos I can see that I'm so puffy. (Rebecca, female, 45 years)
Theme 3: “Alone with asthma”
The subthemes “Being misunderstood”, “Stigma and disclosure”, “Disrupted identity or self-concept” and “Alone with exacerbations” embodied a feeling of misunderstanding and aloneness with severe asthma. See table 4 and supplementary material A4.
Being misunderstood
Participants felt they were the only ones who could understand what it was like to have asthma. They believed people without asthma thought they were exaggerating their symptoms or hospitalisations, perhaps because asthma was “invisible” or because it was difficult for people without asthma to relate to symptoms such as extreme breathlessness. The general public confused severe asthma with milder asthma that should be easily controlled with conventional inhaled treatment; interviewees considered general public education necessary to address such misconceptions.
While many participants had supportive people in their lives, some described partners who lacked empathy or had become resentful of the long-term debilitations of asthma and the burden of providing support. Inadequate emotional support resulted in substantial emotional distress (e.g. depression) that was perceived to be poorly recognised by health professionals and especially affected participants living alone. Family education to better understand severe asthma was requested, so family could cope better with participants' asthma-related emotional distress. Some participants felt that provision of mental health support was lacking or poorly delivered but would be beneficial, while others felt it was beyond the role of medical health professionals or unnecessary.
Stigma and disclosure
Friends or members of the public often made insensitive comments to people with severe asthma. While some participants were comfortable disclosing their asthma, stigma made others feel embarrassed and led them to conceal it and/or their inhaler use in public, in order to appear healthy or avoid being treated differently.
Disrupted identity or self-concept
Participants described discomfort with repeatedly “being false”, in hiding asthma from friends; they also reported that asthma led them to withdraw socially:
[Asthma] does make you introverted. (Jacinta, female, 63 years)
For Rhonda (female, 54 years), the need to constantly fight against the hindrances of asthma had resulted in dissociative thoughts.
Alone with exacerbations
Most participants had experienced frightening exacerbation symptoms including a feeling of drowning or suffocation; the inability to talk or move during exacerbations delayed calling for assistance. They described extreme panic, fear and anticipation of death. In contrast, some individuals reported stoicism in response to exacerbations with the help of cognitive strategies, such as telling themselves “You can make it” or relaxation and/or breathing techniques. For others, stoicism was driven by a concerning combination of habituation to daily symptoms and poor perception of worsening symptoms.
Some participants coped with the reality of unpredictable exacerbations by forward planning (e.g. keeping medications close by for easy access). Others avoided or delayed seeking help for exacerbations to evade the disruption hospitalisation would bring to their lives or overused their reliever inhaler believing, incorrectly, that this could prevent future attacks.
In the aftermath of exacerbations interviewees reported shock at the proximity to death, relief at being alive, concern about the unpredictability of future exacerbations or emotional disorder:
I felt sorry for myself for well over a month. (Cheryl, female, 53 years)
All participants described the need for exacerbation-related support. During exacerbation, this ranged from fetching medications, prompting to go to the emergency department, transport to hospital, calling for emergency assistance to emotional support for their children. During recovery, support needs included household chores, child care, house calls to check on the interviewee, providing the interviewee opportunity to emotionally break down and encouragement that “it will get better”.
Participants felt their family members, including children, experienced stress, fear or even trauma as a result of going through an exacerbation with them, and family often showed concern and feelings of protectiveness of the interviewee in the aftermath. At the same time some family/friends perceived that the interviewee could have done more to prevent their exacerbation.
Theme 4: “Striving to adapt”
The subthemes “Adjustment to life with severe asthma” and “Concerns for the future” represented the theme “Striving to adapt”. See table 5 and supplementary material A4.
Theme 4: “Striving to adapt”
Adjustment to life with severe asthma
As seen in other chronic diseases [18, 19], our participants strove to adjust to their diagnosis over time and reported going through different stages, in unique ways with different degrees of success. A small number had adapted well, but the majority were struggling to deal with the daily burden:
[It's] crap [sic] … [asthma] affects every hour of every day of every week of every month of every year of my life. (Stephanie, female, 38 years)
There was evidence of incomplete adaptation to severe asthma; while most interviewees accepted they had “asthma”, one denied having asthma and few accepted that they had “severe asthma”. In their process of adjustment, our interviewees had used positive and/or negative coping strategies (table 5). Childhood experiences had influenced some adult behaviours; for example, Jacinta (female, 63 years) described terrifying childhood hospitalisations that contributed to her decisions to delay or avoid emergency care as an adult.
Concerns for the future
People with severe asthma hoped their asthma severity would stay the same as it was now or perhaps improve if they continued to carry out self-management activities. Interviewees were concerned that new comorbidities could emerge, possibly related to asthma medication side-effects, that their asthma could become worse or that they could die earlier than peers without asthma. Some described new therapies, including biologicals, as offering hope for preventing their asthma worsening in old age. Others were worried that asthma-related health costs could become unmanageable due to limitations on their ability to work.
Discussion
This study describes, in patients' own words, the significant daily symptoms, limitations and emotional consequences of severe refractory asthma and of its treatment, particularly oral corticosteroids. It identifies important practical and emotional support needs that are not currently met, to the detriment of people with severe asthma and their family members, and highlights the isolation that they feel from others in the community.
Interviewees described ongoing emotional distress in response to the limits their asthma imposed, yet they rarely, if ever, discussed their feelings. The ability to discuss disease-related concerns is important for adaptation to chronic illness and prevention of more serious emotional disturbance [20, 21]. There was evidence of incomplete adaptation to severe asthma by our interviewees, such as denial of asthma or not accepting “severe asthma”. The need for access to emotional support is self-evident from our findings, but the time-pressured nature of primary and secondary care may mean that additional support services need to be developed as specialised add-ons to existing services, including through the use of multidisciplinary teams [22, 23].
Support needs
People with severe asthma expressed the need for “empathy and understanding”, “reasons to stay positive” and “encouragement”. These are similar to the types of emotional support described as helpful by rheumatoid arthritis patients [24]. Interviewees reported a lack of understanding of their experience of severe asthma by individuals in their lives. They particularly wanted their partner/spouse to understand, but some spouses were critical or resentful. Interviewees suggested support services for partners/family, including seminars on “the experience of breathlessness” and “living with someone with severe asthma”, and providing families with emotional support (e.g. after witnessing a frightening exacerbation). Partner criticism has been described in rheumatoid arthritis where it was associated with poorer psychological adjustment by patients [25]. A study of partner criticism in severe asthma, its impact and potential interventions should be investigated in more detail.
Interviewees suggested the development of a “life planning” support service for people with severe asthma that would provide someone to talk to about parenting, finances, career, ill-health retirement, and discussing feelings and intimate relationships. Such services could also improve access to the regular medical care needed for severe asthma by assisting with barriers such as child care and could circumvent risky adherence behaviours through discussion about medication concerns.
Public messaging such as “You can control your asthma” is largely aimed at patients whose asthma can be effectively managed by adherence to conventional treatment, but this strongly contrasts with the reality for people with severe asthma. Interviewees identified this as an important issue and suggested public messages to distinguish severe from milder asthma (table 6). Effective public messaging could help to diminish the stigma and misunderstanding experienced by patients with severe asthma.
Public messaging content on severe asthma suggested by interviewees
Our findings go beyond those of four previous qualitative studies that describe how severe asthma affects physical health, impacts relationships, work and leisure, and detail the debilitating side-effects of oral corticosteroid treatment [9–12]. These studies were narrower in scope (e.g. focusing on a specific theme such as communication or corticosteroid therapy) and unlike the present study do not explore in depth the physical symptoms or emotional burdens faced by people with severe asthma, nor the specific support services that they need.
Strengths of the study include the broad range of participants interviewed, and the rich data obtained on physical, emotional and family burdens and support needs. For example, the range of asthma symptom control in this sample (as indicated by Asthma Control Test scores) allowed us to explore the varied impact of severe asthma, with some participants continuing to experience debilitating symptoms such as shortness of breath and cough every day, and others having a combination of good and bad symptom days, together with sudden-onset attacks, all of which placed important limits on people's lives. Limitations of this work include the small number of participants living outside a major city, which prevented us from fully exploring the impact of geographic isolation on living with severe asthma.
Conclusions
While the focus of much research on severe refractory asthma is the identification of new targeted therapies [26], this study pinpointed substantial, overlooked patient needs. Patients experience significant emotional distress due to the long-term symptoms, treatment and limitations imposed by severe asthma. They described the urgent need for practical and emotional services to support them and their families in managing the burden of their disease. Health organisations and health professionals need to increase their awareness of these burdens so that healthcare services can be developed to assist severe asthma patients in their adjustment to chronic illness, and optimal access to appropriate care.
Supplementary material
Supplementary Material
Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.
Supplementary material ERJ-00765-2017_Supplement
Disclosures
Supplementary Material
J.M. Foster ERJ-00765-2017_Foster
V.M. McDonald ERJ-00765-2017_McDonald
H.K. Reddel ERJ-00765-2017_Reddel
Acknowledgements
The authors thank the patients who participated in the study, the specialists who invited their patients, and Marilyn Yee, Louise Harkness and Sophie Yee (all of the Woolcock Institute of Medical Research, University of Sydney, Sydney, Australia) who assisted with recruiting patients, scheduling interviews and/or transcribed interviews. Special thanks also to Erin Harvey (Centre for Healthy Lungs, University of Newcastle, Newcastle, Australia), Gloria Foxley (Woolcock Institute of Medical Research) and Vicki Kritikos (Faculty of Pharmacy, University of Sydney, Sydney, Australia) for their assistance with patient recruitment.
Author contributions: J.M. Foster conceived the study, contributed to the study design, collected the data, carried out the analysis, drafted the manuscript, and takes overall responsibility for the integrity of the data and the accuracy of the analysis. V.M. McDonald and M. Guo contributed to the study design, analysis, interpretation and editing of the manuscript. H.K. Reddel conceived the study, contributed to the study design, analysis and interpretation and drafting of the manuscript, and takes overall responsibility for the integrity of the data and the accuracy of the analysis.
Footnotes
This article has supplementary material available from erj.ersjournals.com
Support statement: Funding for this study was provided by Asthma Australia, the national consumer organisation for people with asthma. Asthma Australia had no role in the design, conduct, analysis or interpretation of the study, nor did they see the manuscript before submission. Funding information for this article has been deposited with the Crossref Funder Registry.
Conflict of interest: Disclosures can be found alongside this article at erj.ersjournals.com
- Received April 12, 2017.
- Accepted June 21, 2017.
- Copyright ©ERS 2017
References
