Abstract
Introduction Family carers and significant others play a fundamental role in the well-being of people with severe asthma. This study aimed to investigate the challenges faced by family carers/significant others of people with severe asthma, to understand if there is an unmet need and to explore coping strategies.
Methods Carers of people with severe asthma were invited to participate in a face-to-face or telephone interview. Semi-structured interviews were conducted until reaching data saturation of themes. The 20 interviews were recorded and transcribed, and analysis of data followed an inductive thematic approach.
Results We report three overarching emergent themes: 1) “Caring role impacts”, which centred around the negative and positive impacts of caring on carers' well-being; 2) “Unmet needs”, which encapsulated the support needs participants desired and were categorised into unmet information, biopsychosocial needs and carers' involvement in decision-making; and 3) “Coping strategies”, which were central to the range of tools and positive approaches in dealing with caring demands.
Discussion Caring for someone with severe asthma can be burdensome and may negatively affect the physical and psychosocial health of the carer. Various coping strategies are used to manage the demands of these caring roles. Carers of people with severe asthma expressed a need for informational, biopsychosocial and involvement in care decision-making support. Tailored support services that are sensitive to their needs may improve their quality of life and encourage healthcare providers to value and acknowledge the important contribution that carers make.
Abstract
Caring for someone with severe asthma can be burdensome, affecting the physical and psychosocial health of the supportive person negatively. Tailored support services may improve their quality of life. https://bit.ly/2KA9PWS
Introduction
Due to the complex nature of severe asthma, people with this disease experience physical and psychosocial burdens which negatively impact their quality of life [1–3]. Given the adverse impact of asthma on the daily lives of people with severe disease [3], it is likely that the burden of severe asthma also extends to families and significant others [3]. However, the burden that severe asthma has on carers is yet to be explored.
Informal carers, such as family members or significant others, are people who provide care and support to someone with a diminishing physical capacity or chronic life-limiting illness [4]. Whilst caring and supporting someone is regarded as rewarding for many carers [4], this dedication may also be at the expense of their own health, personal and financial needs [5].
Previous research investigating carers of people with chronic obstructive pulmonary disease (COPD) and interstitial lung disease have described the challenges of these caring roles [6–10]. Conversely, a number of comparative studies suggest that different chronic diseases present unique caring demands [11, 12]; therefore research needs to demarcate the type and extent of burden experienced by carers from the general aspect of caregiving [13]. Given the variable triggers and unpredictable nature of asthma, the caring role may impose different demands compared to diseases with an expected trajectory [14]. It is important to understand the impacts of severe asthma on family carers to inform an effective person-centred model of care, which includes not only the person with the disease but all family carers and all other relevant stakeholders. This qualitative study was therefore undertaken to explore the challenges faced by carers of people with severe asthma, particularly the emotional burden of caring, the unmet needs of carers and the strategies carers use to adapt to their caring role.
Methods
Study design
Participants were invited to take part in a qualitative study involving semi-structured interviews. Ethical approval was obtained from the Hunter New England Health Human Research Ethics Committee Approval No.2019/ETHO0143. The Consolidated Criteria for Reporting Qualitative Research (COREQ) was used to guide reporting (supplementary box S2) [15].
Participants and procedure
Inclusion/exclusion criteria are presented in table 1. People with severe asthma from the Australasian Severe Asthma Registry [16], the John Hunter Hospital Department of Respiratory and Sleep Medicine's ambulatory care clinics and research database, or nationwide General Practice and Pharmacies provided the contact details of their nominated carer, after obtaining their carer's permission. Purposive sampling was used to achieve participant diversity, caring duration and caring relationship. If a patient had more than one nominated carer, the carer with the longest caring duration was invited to be interviewed. Carers were approached by letter enclosing written study information and a consent form; the carer contacted the study coordinator to indicate their interest. Written or electronic consent was obtained prior to interview and was sent via mail or e-mail.
Inclusion and exclusion criteria
Data collection
Between September and December 2019, in-depth semi-structured interviews were conducted by EM (a female doctoral student and trained qualitative researcher) either face-to-face in a private room within the Hunter Medical Research Institute (HMRI) or by telephone. People with severe asthma were not present during interviews, and the confidential nature of the interview was reiterated to carers prior to commencement. The interview guide was developed around the study aims and existing research literature, and explored carer roles, experiences, concerns and coping strategies (supplementary box S1) [6, 11, 14, 17–23]. Interviews were audio recorded. The face-to-face (n=4) interviews were 34–59 (mean 45, sd=9) minutes in length and telephone interviews (n=16) were 20–61 (mean 35, sd=13) minutes. Interviews continued until no new themes emerged. All interview quotations are labelled using caring relationship, participant number and age or decade to ensure confidentiality.
Data analysis
Digital interview recordings were deidentified and transcribed. Transcripts were verified against the original sound file by EM. NVivo Pro version 12.0 software was used to manage the data. Data analysis followed an inductive thematic approach [24] beginning with familiarising and re-reading of transcripts, then initial coding of 10 transcripts, and grouping of common codes into emergent themes. The interviewer kept a reflective journal to explore and identify recurring thoughts and ideas. Emergent themes and codes were discussed, and conflicting elements on the interpretation and analysis of the data were discussed until agreement was reached with co-authors EM, VM and VC. Thematic saturation was considered to be achieved when the identified themes were robust and no new information emerged from the data. Throughout the analysis, transcripts were frequently revisited to confirm the consistency of themes. Final sub-themes and themes were reviewed by all co-authors.
Results
Demographic details are presented in table 2. Participants were 34–80 years old (mean=59, sd=14), 11 (55%) of whom were females. Twelve (60%) identified as partners of their care-recipient, three (15%) as friends, two (10%) as parents, two (10%) as offspring and one (5%) as a sibling. The majority of participants were Caucasian (80%) and had been providing care for >10 years (table 2). From the interview data, three key and novel themes emerged, which are discussed with supporting representative statements. Within each theme there were interconnected sub-themes (figure 1). For context, box 1 contains a brief overview of tasks and support aspects carers discussed, additional descriptive quotes in supplementary table S1.
Box 1. Providing care and support
Carers had wide-ranging “healthcare support” roles from medication management to attending healthcare appointments or dealing with sudden severe attacks.
Healthcare support
Participants described how they safeguard that care-recipient adheres to prescribed medications. They mainly spoke about the need to maintain ongoing awareness and monitoring on what medication their care-recipients were taking and ensuring prescriptions were filled.
“I have to know what he takes, when he takes it, what he needs when he's having attack”. (Spouse, P10, 68)
“I'm sort of a nurse to her. So, I am the one to remind her to take this and that and don't forget about, you know, basically I'm her secretary and nurse as well”. (Spouse, P1, 36)
Emotional support was also a key caring role. For example, during severe attacks interviewees described how they remained calm to “save” their loved ones or described giving comfort during attacks or encouragement by tailoring activities to the patient's limitations.
“Sometimes I took her to places that she likes, going to the beach, just a therapeutic holiday. I call it a therapeutic holiday, just to feel her at peace, whatever”. (Spouse, P1, 36)
“When her asthma gets worse, she does. Like she always says oh take good care of my kids and I'm going to die soon, and then I say no, you're not going to die, you just have to follow what your doctor told you and be strong for your kids”. (Friend, P17, 35)
Demographic characteristics of carers
Themes and subthemes from the thematic analysis.
Theme 1: “caring role impacts”
This theme encompasses the inherent negative and positive impacts of caring on carers' confidence and awareness, identity, physical and emotional health. Participants also spoke about the rewards of caring including reaffirmation of relationships and fulfilment of self-worth (table 3).
Theme 1: “caring role impacts”
Confidence and awareness
Participants gained new skills and perceived confidence to recognise symptoms, taking appropriate action during acute attacks and maintaining such skills over time. Being a qualified first aider undoubtedly increased participants' confidence in care:
Yes, I'm very confident. I also worked in schools and I was a first aid officer in primary schools, so dealt with young children with asthma.
Spouse, P10, 62
Others consciously blend their power of observation and heightened situational awareness:
Your powers – you have to develop powers of observation. A long time before you touch anybody you look and you see from their face, you see from their hands, you see from their skin, all of these things.
Friend, P13, 80
Having their own asthma diagnosis, although not severe, allowed one participant to understand what it was like to be breathless, giving her confidence to recognise her mother's core symptoms.
I'm very confident about it because I've got it.
Daughter, P15, 55
Whilst some carers achieved confidence, others struggled to gain self-efficacy about their ability to provide the care required for the disease itself.
It's the timing of that, recognising that things are becoming critical that I probably had the most difficulty with.
Spouse, P9, 66
Caring identity
Many participants perceived the caring role as inherent to their relationship with their care-recipients. Over time, some participants did identify as “carers”, yet others declined the term and viewed themselves as “partner” or “supportive person”; to them “carer” referred to health professionals. Others recognised themselves as on-call carers, and they discussed how the extent of their caring role increased as care-recipients’ symptoms increased or when there was a crisis, such as sudden severe attacks and/or a marked health deterioration.
Accepting caring roles
Most participants embraced their caring role willingly; however, others expressed feelings of anger and resentment. Participants felt valued when the care-recipients acknowledged their support. Participants shared that there was a strong desire amongst care-recipients not to become a burden in their own families and that they wanted to live with an improved quality of life.
She wants to change. She definitely wants to improve. That's why we're looking into things like bronchial thermoplasty and stuff, stuff like that. She wants to be able to help more, to do more and do some of the more normal things and be a bit more normal.
Spouse, P16, 47
Participants also described how their care-recipient's condition was unfair, which led carers to feel bitter and angry. This was partly driven by frustration when none of the medications seemed to work.
It's a pain in the neck when they're sick. It's awful when they're sick. I'd rather do anything else. When they were really, really sick and wouldn't listen, I just thought well just die, I don't care really.
Spouse, P11, 7th decade
This particular quotation highlighted the severe burden on carers and the fluidity of their situation in the face of their significant other's acuity.
Caring impact on life
The impact of caring on participant's well-being was multifaceted, ranging from their health to their relationships and financial stability. Topics of interpersonal and extra-personal strains including reduction in sexual intimacy, disruption in social activities, lost income and career change caused by their caring roles were mentioned often.
Physical impacts included sleep disturbance and tiredness, particularly when the care-recipient also suffered from comorbid conditions, which made their role more challenging. Comorbidities complicated carers' capacity to manage medication and created escalating care.
A bit difficult mainly because she doesn't only have asthma. She's got other medical things that just kind of stem from it, which means she's a bit immobile these days. Yeah, it's hard having to do everything.
Spouse, P16, 47
A participant reflected on how his caring role explicitly affected his lifestyle and level of sedentariness as his care-recipient became more physically sedentary.
The impact is that I am more sedentary than what I would normally be. So I'm more sedentary because she's sedentary.
Spouse, P4, 66
Living with someone with severe asthma negatively affected the psychological health of the carer. Whilst some participants were dominated by feelings of uncertainty, hopelessness, distress, fear, frustration, anger, guilt, anxiety and depression, some felt less troubled as care-recipients had not experienced life-threatening episodes.
Moreover, emotional strain was amplified by urgent visits to emergency departments for sudden severe attacks. Most participants found difficulties in adjusting to this. They talked about being trapped on a roller coaster of negative thoughts, emotions and actions. They felt that they were struck by a sudden tidal wave of emotions feeling helpless, worried, sad, frustrated, tired, alone, desperate, panicked, stressed, frightened and guilty. Although the intensity of the feelings declined after care-recipients recovered, these feelings stayed with them throughout their everyday lives. Some described how they suffered from depression which they related to their caring roles. The unpredictable nature of asthma awoke worries about the future, when the next asthma attack would occur and whether their care-recipient would survive. These mixed emotions extend to other family members.
But it's just like being in a roller coaster. You just go from one day to the next and what's happening next and you just don't think about this is your life.
Spouse, P11
I find myself that I'm almost on the roller coaster ride.
Spouse, P7, 46
For some, the threat of perceived adverse effects from asthma treatments also caused constant fear. The unwanted side-effects from long-term usage of oral corticosteroid brought particular worries.
Some participants spoke positively about how their caring roles motivated them to become more self-aware. Positive parental/marital/friendly relationships grew stronger over time despite the impact of severe asthma. Others reported finding clarity in their life priorities.
It would have brought us closer together if anything.
Mother, P12, 66
Further quotations for this theme are provided in table 3.
Theme 2: “unmet needs”
Carers have needs independent to those of the care-recipient and were categorised into sub-themes of adequate information, biopsychosocial needs and carers' involvement in decision-making. All participants were invited to suggest solutions or resources that they would like to see change. Table 4 summarises carers' proposed suggestions and their alignment to table 5.
Suggested solutions of unmet needs identified
Theme 2: “unmet needs of family carers and significant others of people with severe asthma”
Adequate information
Participants reported unmet needs regarding information about the disease, treatment, side-effects, symptom management, responding to urgent care and the ability to perform cardiopulmonary resuscitation:
I'm least confident about a severe asthma attack – what to do. Like, ringing an ambulance.
Spouse, P6, 63
Participants placed high value on receiving straightforward information explaining what severe asthma is and its treatment. When probed about how they wanted to receive such information, participants expressed the desire for online material, smart device applications or brochures.
Biopsychosocial needs
The time for self-care activities or pursuing their own interest were recognised as vital for maintaining physical wellness. Several participants had higher levels of unmet needs when care-recipients experienced an excessive symptom burden and were impacted by comorbid conditions. This added to their own health impact and they reported that they were less able to manage their own condition.
Demands for psychological wellness were frequently mentioned as important in managing difficult feelings associated with distressing situations. Participants considered the need for counselling, networking and support services both at the early and in the long-term stage of their caring roles. They were unaware that help may be available or did not know where to seek it. Although the majority desired access to support groups, many interviewees were also reluctant to seek support. Reasons for this included insufficient time, anxiety about leaving the care-recipient, the desire not to be social, finding repetitive information and the belief that finding and utilising support services is a matter of personal choice.
Participants frequently remarked on the need for the community to be aware and accepting that severe asthma exists. They desired activities that create awareness and knowledge to reduce the stigma of severe asthma.
Carers' involvement in decision-making
Whilst some carers discussed the importance of their role as an expert partner in care, others felt inadequately involved in decision-making:
Well, I don't really get too much feedback from them. In hospital, they do all their discussions with her.
Spouse, P6, 63
Conversely, when the carer role was recognised and supported, carer satisfaction was increased:
Completely satisfied with how I'm involved or how I'm accepted into discussions.
Spouse, P4, 55
As far as the health system is concerned, other carers highlight four sources of difficulties, which include organisational deficiencies (referral pathway), lack of resources (availability of lung function testing services, waiting times), communication between clinicians and carers or patients, and finding clinicians perceived as expert in diagnosing and treating severe asthma. The difficulties affirmed carers' challenges in navigating the system and advocating for caring recipients.
If she ever goes to hospital, just in emergency, for any reason, generally the doctors there are completely useless. All they do is shovel steroids into her and they won't listen that she's steroid resistant. It's in her chart and all her notes and everything.
They don't listen to her.
Spouse, P16, 47
Whilst some expressed doubts, others conveyed satisfaction with the quality of care and support received.
I think that is three-quarters of the battle if I'm being honest with you – knowing that you have that backup support. Knowing that you can speak to your doctor, speak to the professor.
Spouse, P2, 68
Theme 3: “coping strategies”
Participants articulated several coping strategies to deal with the care burden. As challenges arose, they implemented a range of tools and skills for dealing with negative experiences. These included social and problem-solving strategies and emotional strategies (table 6).
Theme 3: “coping strategies”
Social and problem-solving strategies
Taking care of oneself and creating opportunities to take a break were regarded as critical for coping with their roles. Effective time management techniques made other carers take some time out:
Well I get up early and I walk the dog usually and then she stays in bed usually until I get back.
Spouse, P5, 70
Increased engagement in physical activities, hobbies or work was reported by carers when they received additional support from either a family member or friends. Whilst the majority of carers valued interaction with supportive relationships, some carers tended to distance themselves either physically or emotionally from stressful situations to rebuild themselves:
Sometimes I have to allow myself to have time away to be able to deal with that and get out of that carer role, to be able to make myself feel better as well, because that carer responsibility can be quite draining with regards to her asthma.
Spouse, P7, 46
Emotional strategies
Unconditional love appeared to make it possible for many of the participants to continue in their roles:
R's my best friend. I mean that was a fact prior to her being so unwell and that's not going to change.
Friend, P13, 80
Participants’ ability to find a sense of meaning in their roles bolstered resilience and helped them go on with life:
You just do what you have to do.
Mother, P12, 66
Discussion
We report the experience of supportive carers of people with severe asthma, an area not previously investigated. We found that carers experience increased levels of emotional distress during sudden severe attacks and have unmet needs relating to informational, biopsychosocial and carer involvement supports. This research adds important knowledge around family carers' roles and support needs, the impact of their role on well-being and coping strategies used. These data should be considered in the management of the person with severe asthma to ensure a holistic person-centred approach to care that includes family carers and all relevant stakeholders.
Participants reported that they are well placed to provide care and support to people with severe asthma but experience multifaceted impacts on well-being. Those caring for people with severe asthma with multiple comorbidities reported high burden, depressive symptoms and poor self-rated mental health. These data importantly reflect the impact of increasing disease burden on not only the person with the disease but also their significant others.
Whilst quantitative studies in other disease areas have found that caring is associated with poor quality of life [25, 26], this is the first to explore the emotional impact of caring on individuals supporting people with severe asthma. We report how the unpredictable nature of severe acute asthma attacks increases carers' emotional distress. These severe attacks differ distinctly from some other conditions that have a more chronic disease trajectory [14] and place psychological demands on carers, leading to anxiety, depression, stress, fear, helplessness and exhaustion. These findings are consistent with data from patients with severe asthma [3] and parents of children with asthma [22] who feel emotionally burdened due to the disease's unpredictable nature. The importance of including both the patient and carer in a person-centred model of care is essential to reduce the sizeable burden associated with respiratory disease, especially severe asthma [27]. A major difference between carers of adults and children however is that parent-carers are supported in their child's healthcare journey, whereas in the adult management support is usually and appropriately directed towards the patient. This highlights the importance of providing resources to carers dealing with highly stressful situations, which they have identified in this study as leading to worsening of carer biopsychosocial health [28].
Contrary to the findings of Foster et al. [3], where patients with severe asthma experienced disrupted identity, carer participants did not report concerns with identity. This suggests that becoming a source of support for loved ones may induce a natural human affective response [29]. Our data demonstrate that participants experience benefits from their caring including fulfilment of self-worth, personal growth and positive family functioning. Parallels can be drawn from other chronic diseases, where carers described positive experiences in their caring roles [30]. Our study suggests that caring for someone with severe disease is not purely associated with negative consequences, but one may find greater positivity if supported appropriately.
Another important finding from a support needs perspective is the lack of information accessible to carers about the disease, its course, treatment options/side-effects and when to call for emergency care. Information provided by health professionals about the disease is crucial to support carers in their caring roles. The lack of confidence in recognising when signs and symptoms require urgent attention may cause confusion in carers and increase frequent emergency presentations [31]. Importantly creating a clear referral or emergency pathways reduces waiting times and promotes timely care. Given the increased access to biological therapies [32] and management advances [33] that have occurred in severe asthma, it is not surprising that carers are in need of new knowledge and skills. Access to critical information could empower carers to maintain both their caring roles and well-being, which aligns with the needs of people with severe asthma [3].
Participants reported the need for clear information, timely access to care and positive relationships with health professionals, but some expressed dissatisfaction with these aspects. This is consistent with patient reports [34] and suggests that specialist clinics are often successful in providing competent and sensitive care for both care-recipients and carers, but other aspects of the severe asthma healthcare journey can cause significant difficulty for carers, such as access to services and information. A severe asthma carer support needs assessment tool may help identify sensitive support requirements [35]. A support programme and coping techniques should involve the carer and the patient. Previous research has demonstrated how inclusion of COPD family carers benefited in comprehensive pulmonary rehabilitation [36].
We identified how carers cope with their roles. Over time, carers had learned to accept the inherent consequences of caring, but still had to endure and cope with the unpredictable nature of asthma, obviously when encountering sudden severe attacks. Our findings that the majority of carers in this study use social and problem-solving strategies and emotional strategies to cope with caring demands concur with the previous studies [10, 28, 37]. These strategies enabled carers to achieve equilibrium between internal and external inputs that affect biopsychosocial demands [29] that result from their caring roles. This highlights the importance of carers engaging in self-care activities and hobbies, embracing extended support from families or support groups, and developing resilience.
Study strengths include purposeful sampled participants who had been carers for several decades providing rich data, rigorous methodology and extensive quotations to ensure the validity of the data. We acknowledge some limitations. Firstly, the majority of participants came from one geographical location, and despite efforts to include a diverse range of carers/support persons, they were largely Caucasian, not working full-time and mostly identified as spouses. Secondly, this study was not able to explore the caregiving experience over the course of severe asthma. Lastly, the fact that most carers were caring for >10 years probably affected the results, as family carers involved more recently in caregiving roles may have other needs and experiences. Future research might include a greater mix of employment status, carer experience and cultural background, and include the views of carers living in rural areas. Carer burden and the roles of carers in supporting the self-management of people with COPD has been explored [8, 9]. Studies conducted show that carers reported health-related problems resulting from their caring role. An increase in caring burden is evident to family carers when patient's self-management declines over time, particularly during the advanced phase of COPD. There is a paucity of data showing the caring burden in severe asthma compared to that of COPD. This knowledge is critical to develop targeted resources and interventions aiming to support carers of people with severe asthma.
Conclusion
Caring for someone with severe asthma can be burdensome and affect the physical and psychosocial health of the carer negatively. Carers discussed coping strategies to manage caring demands. They highlighted the need for adequate informational, biopsychosocial and involvement in care decision-making support. Tailored support services that are sensitive to carers’ needs may improve their quality of life and encourage healthcare providers to value and acknowledge the important contribution that carers make.
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 00812-2020.SUPPLEMENT
Acknowledgements
The authors would like to thank the study participants and the health professionals involved in recruitment. We thank the Hunter Medical Research Institute. Special thanks to Leonie Jones and Jenny Darcy (Severe Asthma Outpatient Clinic, John Hunter Hospital, Newcastle, Australia), Janet Bristow, Erin Harvey (Priority Research Centre for Healthy Lungs, University of Newcastle, Newcastle, and Australasian Severe Asthma Network) for their assistance in recruitment and access to ASAR.
Footnotes
This article has supplementary material available from openres.ersjournals.com.
Author contributions: E.C. Majellano, V.L. Clark and V.M. McDonald conceived and designed the study. J.M. Foster contributed to developing the interview guide. P.G. Gibson contributed to planning participant recruitment. E.C. Majellano collected the data and performed the analysis, which was checked by expert qualitative researchers V.M. McDonald and V.L. Clark. E.C. Majellano drafted the first and subsequent versions of the manuscript with feedback from V.M. McDonald, V.L. Clark, P.G. Gibson and J.M. Foster. All authors were involved in revision of the manuscript for important intellectual content and approval of the final version of the manuscript.
Conflict of interest: E.C. Majellano has nothing to disclose.
Conflict of interest: V.L. Clark reports a fellowship from the National Health and Medical Research Council during the conduct of the study, and a $1400 grant to cover research-related costs received for providing education to AstraZeneca staff and symposium, outside the submitted work.
Conflict of interest: J.M. Foster reports an unconditional research grant, and steering committee, independent medical education, speaker fee and travel costs from AstraZeneca; personal fees for independent medical education from Boehringer Ingelheim; and personal fees for independent medical education and a speaker fee from GlaxoSmithKline, all outside the submitted work.
Conflict of interest: P.G. Gibson reports speaker's fees from AstraZeneca, GlaxoSmithKline and Novartis, and grants from AstraZeneca and GlaxoSmithKline, outside the submitted work.
Conflict of interest: V.M. McDonald reports grants from the National Health and Medical Research Council during the conduct of the study and outside the submitted work.
Support statement: This study was funded through a Seed Grant from the National Health and Medical Research Council Centre for Research Excellence in Severe Asthma, Australia and The University of Newcastle Postgraduate Research Scholarship. Funding information for this article has been deposited with the Crossref Funder Registry.
- Received November 1, 2020.
- Accepted January 12, 2021.
- Copyright ©The authors 2021
This version is distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0. For commercial reproduction rights and permissions contact permissions{at}ersnet.org
References
