The meaning of living with chronic obstructive pulmonary disease
Nurse Consultant
Long Term Conditions
Case Management Service
NHS Heywood Middleton and Rochdale Provider Services
1st floor
London House
Oldham Road
Middleton
Manchester M24 1AY
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Telephone: 01706 525654
E-mail: clancy.s@sky.com
Abstract
Aim. To explore the existential experiences of 10 patients with chronic obstructive pulmonary disease (COPD) who had been prescribed long-term oxygen therapy (LTOT) and their carers.
Background. Chronic obstructive pulmonary disease is a progressive and debilitating condition, with an insidious onset often diagnosed in the middle to later years of life, after a history of worsening breathlessness (Herbert & Gregor 1997). It is a life limiting condition that is on the increase worldwide. Evidence suggests that for some people with COPD oxygen therapy can improve longevity and quality of life (MRC 1981, NOTT 1980). Understanding of the existential meaning of COPD for people is required.
Method. This longitudinal Heideggerian study was carried out between 2005–2006. Participants were interviewed separately, in their own homes, at the start of LTOT, second 3 months later and finally at 9 months.
Results. Themes of living with COPD emerged from the data; struggling, fear, experience of ill health, blame, fatalism and hidden disability.
Conclusion. The participants all shared very negative experiences regarding the changes that living with COPD had placed on their lifestyle and quality of life. The introduction of oxygen appeared, for all but one couple, to increase the negative impact of living with poor health.
Relevance to clinical practice. The participants’ experiences in this study highlight the need for health professionals to explore with people what it is like living with a long-term condition. This sharing of experiences may help individuals to make informed choices about treatment and readdress their perception of ‘just existing’ with ‘no quality to their lives’ thereby enabling people and carers to adjust to living with a life-limiting condition like COPD and the introduction of life long-term therapeutic interventions.
Introduction
Chronic Obstructive Pulmonary Disease (COPD) is a major cause of morbidity and mortality worldwide, often resulting in premature death (GOLD 2004). By 2020 it will be the third leading cause of mortality worldwide; in 1990 it was 12th (GOLD 2005, Murray & Lopez 1997). The disease is characterised by airflow obstruction, which is usually progressive, not fully reversible and does not change markedly over several months. The condition is associated with smoking (Lokke et al. 2006, NICE 2004, Fletcher & Peto 1977) and is endured by about one in six smokers (BTS 2001). World-wide, COPD is the only leading cause of death where mortality is still rising (Goodridge 2006). This condition is very disabling, with a poor prognosis and, to date, no cure (Oliver 2001). COPD is considered a systemic disease, producing both respiratory symptoms and non-respiratory ones (e.g. fatigue, weight loss and sleep disturbance NICE 2004).
Chronic obstructive pulmonary disease has an insidious onset and is usually diagnosed in the middle to later years of life, often after a history of worsening breathlessness (Herbert & Gregor 1997). The condition is debilitating with affected people typically experiencing respiratory symptoms on most days with little variation over time despite medication (NICE 2004). Pioneering work by Fletcher and Peto (1977) identified that, as the person’s lung function deteriorates, so does the overall prognosis and life expectancy. Increasing disease severity impacts on the person’s ability to maintain activities of daily living, which can then negatively influence psychological well being and lead to symptoms of depression and a reduction in coping (Scharloo et al. 2000, Cannon & Cavanaugh 1998, Jonsdottir 1997).
Further disease progression can result in some people developing chronic hypoxaemia (oxygen deficiency in the blood), which can lead to irreversible organ failure with a poor prognosis if left un-treated (Criner 2000). The reduced/impaired oxygenation of the blood stream can result in forgetfulness, psychosis and impaired social functioning (Cannon & Cavanaugh 1998).
For some people, hypoxaemia can be managed with long-term oxygen therapy (LTOT), which is argued to improve both quality of life and longevity by helping to correct oxygen deficiency in the blood stream and prevent organ failure and development of cor pulmonale (right sided heart failure) (Petty 1998). The positive impact of LTOT (>15 hours/day) on survival for people with COPD with high levels of carbon dioxide in the blood was demonstrated in two landmark trials (MRC 1981, NOTT 1980). However, the perspectives of individuals and carers’ experiencing LTOT have not been well-explored.
Aim
The aim of this qualitative study was to explore longitudinally the views, feelings and experiences of people with COPD and their carers, at the onset of prescribed LTOT and for 9 months thereafter. The findings reported in this paper focus on the existential meaning of living with COPD.
Methods
The study employed a qualitative design, specifically Heideggerian phenomenology (Heidegger 1962). Data were collected between 2005–2006 by means of focused-conversation style interviews, the aim of which was to encourage participants to reflect on their experiences, think about their current situation and share what these experiences mean for them. One author (KC) conducted the interviews and also maintained a reflective diary, in which her own thoughts and reflections were recorded.
Participants
Participants were recruited from two hospital sites in north-west England. The following considerations helped guide the recruitment, to ensure that patients had relevant clinical and treatment related experiences: COPD diagnosis (per NICE 2004), hypoxaemic requiring LTOT (per Royal College of Physicians 1999) and independently mobile prior to commencing LTOT. Participants were approached directly by the researcher and carers recruited via approach from patient participants. Participants were interviewed separately, in their own homes, at the start of LTOT, second 3 months later and finally at 9 months.
All the participants who were approached joined the study, however, three participants did not complete all interviews because of the ill health. For patient characteristics see Table 1.
| Patient | Age | Carer | Age | Status |
|---|---|---|---|---|
| Bert | 66 | Elizabeth | 60 | Wife |
| Marie | 76 | No carer | ||
| Vincent | 59 | No carer | ||
| Doris | Never interviewed | Janet | 50 | Daughter |
| Michael | 57 | Edith | 55 | Wife |
| Bessie | 70 | Max | 71 | Husband |
| Pauline | 72 | Peter | 74 | Husband |
| Gordon | 64 | Jane | 62 | Wife |
| Eric | 78 | Betty | 78 | Wife |
| Alfred | 78 | No carer |
Ethical considerations
Ethical approval was sought and obtained from Pan-Manchester Student Research Ethics Committee, the University of Manchester Ethics Committee and the Acute Trusts Research and Development Department with permission to undertake the study in the clinical area provided by the Manager of the relevant service.
Data analysis
Van Manen’s (1990) hermeneutic phenomenological reflection was adopted for analysis of the lived experience-rich data, to identify emerging themes and to explore their meanings with participants. This approach was selected because of its focus on human science researchers being concerned with the need to care and develop knowledge about the unique experiences of the phenomenon as they interpret the existential meaning. This knowledge is then used to enhance the care of others.
Van Manen’s (1990) approach highlights the importance of using any lived experience description, stories, conversations, taped interviews, to uncover themes and significant statements of the phenomenon under study. Van Manen (1990) proposed that to search for meanings in the text, it is important to think of the phenomenon described in the text as meaning units, structures of meaning or themes. By seeking to interpret the meaning of text, the researcher is aiming to discover and grasp the meaning of the experience and to write the findings in such a way that the phenomenological text leads the reader to wonder and seek to understand (Van Manen 2002). Phenomenological writing suggests Van Manen (2006) requires ‘sensitive interpretative skills and creating talents from the researcher’ (p. 720) if the findings from the research are to be appreciated and understood.
Results
Details of participants
Both male and female participants took part in the study either as a patient participant or a carer. The age range of participants was between 50–78 years. Table 1 presents details of participants.
Living with COPD
One of the key themes that participants talked about at the first interview was about what it was like for them to live with a long-term condition. They provided valuable insight into how long they had lived with chest disease, the symptoms they experienced and how these chest symptoms affected their ability to maintain everyday tasks. Some participants talked about struggling to maintain household activities like cleaning, washing and cooking whilst others spoke about difficulties with bathing and personal grooming. A number of male participants spoke about being unable to maintain their employment and consequently feeling forced to take early retirement.
Most participants were keen to tell their story and share their experiences, whilst others needed prompting. Docherty and McColl (2003) suggest that people living with a chronic illness can find story-telling therapeutic as it can help move them from feeling ‘marginalised, disempowered and stigmatised’ to feeling valued with a sense of purpose. Fife (2005) suggests that individuals try to find meanings associated with lifestyle changes as a result of loss/illness to accept and adjust to a particular event. The meanings that individuals place on their experiences of disease and illness can affect how they cope overall (Luker et al. 1996).
There were a number of unique existential experiences that the participants used to describe their meaning and experience of illness. These aspects are discussed within the following key themes of struggling, fear, experience of ill health, blame and fatalism and hidden disability.
Struggling
Struggling is a phrase that all participants, including carers used to describe what it was like to live with COPD. Participants expressed how, over the years, their chest symptoms had become so severe that they found themselves struggling to breathe, maintain their independence and complete activities. Similarly carers used the word ‘struggling’ to give insight into their experiences of watching helplessly as their partner gasped for breath.
Bert (participant) explained that his chest affected him on most days, although he did experience ‘good’ and ‘bad’ days. Reflecting on his ‘bad’ days, he stated:
A bad day is when you’re really struggling for breath, just walking to the kitchen or when going upstairs is toil. It’s when the stuff I take doesn’t seem to help.
Elizabeth (carer) described how she felt when Bert was struggling to breathe:
Well you’re just helpless plus when they are struggling for breath and you start saying shall I do this […]. Because he can’t get his breath he also can’t speak to you so he’ll snap an answer back to you.
Marie (participant) also focused on her breathlessness and explained that struggling to her is when;
I can’t walk very far without being short of breath and I’ve got more and more dependent on my inhalers and the nebuliser.
Vincent (participant) described for him, what it was like to live with COPD and how it had impacted on his daily life:
At one time I used to walk into the town, now if I want to go out I’ve got to get a taxi because I can’t stand at a bus stop because of the fumes. In summer, I like my door open but I can’t now, if cars are parked from the hospital, the minute I get a whiff of fumes or even going in the shop with all the fumes, it catches my breath. I mainly use the microwave because cooking fumes affect me, even bending down will catch my breath.
The meaning of COPD for Vincent was apparent in the emotive phrases he used, like ‘labour’ and ‘closing in’. Vincent also spoke of ‘labour’ when out of the house or performing tasks like making a drink, having a shave or a shower and how this resulted in his perception that his world was ‘closing in’, despite the introduction of LTOT. Vincent said:
At one time I used to walk to…, but then it got to were I was stopping nine times just going down the road and then it all started closing in. […] At one time I’d be alright in certain weather conditions, but now even brewing up [making a cup of tea] is a labour.
Michael (participant) described his struggling as needing to ‘acclimatise’. He recalled how he became out of breath on exertion and how he needed to stop and catch his breath before he could continue his activity:
I’ve got to go at my own pace and I like to stop and acclimatise. I’ve found that if I try to keep up with everyone else that’s when I start with my breathing. So now what I do is stop and acclimatise.
His wife Edith (carer), however, disputed Michael’s concept of acclimatisation, even following commencement of LTOT. Edith described her experiences of observing Michael needing to stop for breath because he was struggling:
He can’t walk up the stairs in one go; he has to stop half way to get his breathing steady, he can then carry on for a bit more before he needs to stop again at the top of the stairs and lean on the window ledge. When he takes the dog for a walk he doesn’t walk all the way round because many a time he’s got to stop and I take the dog while he stands leaning on something gasping for breath.
Pauline (participant) described how she had been ‘chesty’ for quite sometime, but had only started to take notice about 4 years ago:
It started about 4 years ago, I was visiting next door’s new baby […], when I tried to lift him up I couldn’t breathe. I went to the doctors and had all the tests and when they came back normal I just carried on. There were times when I struggled but I just thought it was because of old age and just let it go.
Pauline’s comments are in keeping with GOLD (2004) and The Respiratory Alliance (2002), who suggest that people experiencing respiratory problems often do not appreciate the significance and therefore do not present to health services until symptoms are quite advanced.
Gordon (participant) described struggling with wheeze, chest tightness, breathlessness and chest infections. Gordon’s wife Jane (carer), who is registered blind, explained how Gordon had struggled with his chest for about 10 years and related her struggles to problems experienced when Gordon was unwell and required hospitalisation:
He has probably been really bad for the last 5 years and has had frequent hospital admissions; I would be visiting him at the hospital nearly every 2 weeks.
Jane’s struggles particularly related to the practicalities of hospital visiting. She commented on how she regularly had to order taxis, thereby relying on others, because she was unable to get to the hospital by bus because of her blindness. To appreciate how Gordon was feeling, Jane felt the need to be observant of his mood.
Because I’m blind I can’t see how he looks, I just have to work out from his mood. When he is short tempered, aggressive or nasty it makes me think that he is not well.
Eric (participant) experienced chest tightness and breathlessness daily and talked about struggling in terms of his breathing and trying to care for his disabled wife:
Recently it has affected me for walking, because she is in a wheelchair I’ve got to do all the errands. When I walk I can’t breathe and I get tight on the chest. I know where all the forms (benches) are in town, so I go so far and then I sit for a short spell before I carry on.
Fear
Participants frequently spoke about the fear they experienced, in relation to the fear of ‘losing their breath’ and their fear of the future. Vincent, a lifetime bachelor with no relatives nearby, talked about his fears of open spaces and situations over which he had no control:
I try to get out but as I say I get a taxi. I mean to be honest I go for a couple of pints just to get out. If I try to go shopping first of all there’s the sense of claustrophobia which I never used to have, but also err I get frightened if I get really breathless. I was also getting dizzy spells as well which the doctor said was because of the lack of oxygen. I was worried in case I might collapse or something. I used to like going on the trains but that’s stopped now because of the breathing. Plus if I get heavy breathing, sometimes I can’t control my urine and if there is no toilet, I’m in danger of panicking more and then I wet myself.
Michael’s fear was linked to the panic that he experienced when he was short of breath. He was asked what it felt like when he was short of breath and he responded:
It’s panicky, you panic and think about what you’re going to do, it’s (pause) it’s frightening actually because you think Jesus this is it!
Gordon described situations where he feared his treatment was not working:
I would start to panic you know, I felt like I couldn’t get the nebuliser on quick enough and then it wasn’t always effective.
Elizabeth spoke about Bert’s condition in terms of it being a terminal illness and how she feared for the future:
We know it’s a terminal illness, a slow terminal illness and we wonder how much worse he’s going to go and how quick […]. I don’t bring the subject up with him, if he brings it up that’s fine. When he first started to struggle, H had just died and he was unbearable. Sometimes it was so difficult that I thought I can’t put up with this, but you do, you have to come to terms with it. You work through it together; I think it must be really difficult for those people on oxygen who live on their own […]. I think to myself what’s going to happen, am I going to have to move from here into a bungalow? Are we going to have to get a stair lift, because I wonder how far we can go with this and how much worse it’s going to get and what we’re going to have to do? Because I know it’s not going to get better, we both know that.
Following the interview with Elizabeth the researcher recorded in her reflective journal:
I was surprised with Elizabeth’s choice of words this morning. She is the only participant that has used the phrase terminal illness to describe her feelings about Bert’s health. All of the participants have spoken about life longevity on oxygen. Perhaps Elizabeth is more familiar with the phrase because of her medical background (medical secretary). Her choice of words makes me think of palliative care. When does COPD become palliative and when as health professionals should we be preparing patients and their carers to ensure that good end of life care is offered and delivered?
Peter (participant) said that living with COPD is:
On your mind all the time, it’s constantly there, what can you do, is she gonna get better, is she gonna get any worse? I just feel so helpless because I can’t do any more for her. I mean I feel like crying, but big tough lorry [truck] drivers don’t cry do they!
Previous experience of ill health
Observing others with respiratory disease appeared to have some impact on participants’ perception of disease. Participants who had observed a family member or a close friend had insight into the disease and how people lived with the effects of a chest illness. More importantly this impacted on the meaning they ascribed to their symptoms and experiences and also on how they perceived the introduction of LTOT.
Bert (participant) described how his fear was associated with his previous experience of watching both his father and his brother struggle and die as a result of COPD:
A lot of the times when I’m bad I think of my brother. He was really bad. At the finish he never got out of bed, he just sat there and a lot of the times I think about that. He was bedridden for two and half years before he died. I think I’m going to finish up like that; it’s always at the back of my mind.
Bert’s wife, Elizabeth’s fear was associated with her father’s illness as she described:
To be honest with you that last 12 months when he (Bert) was really bad I had visions of coming home and finding him dead in the chair, you know. It crossed my mind a few times that, mind you that was how we found my dad as well you see, but my dad’s was a heart attack.
Fatalism
Several participants indicated that previous experience of chest disease amongst family and friends gave them insight into their own future – commencement of LTOT was therefore perceived as part of an inevitable decline. Vincent had watched his mother suffer with respiratory disease and therefore had anticipated commencement of LTOT:
I knew eventually that I would be on oxygen because I’d seen my mother deteriorate. I used to get embarrassed because my mother used to stop and look in windows and say that she was looking at the nice shops. Now I do exactly the same, I stop at gardens and say ‘aren’t they nice flowers’ when really it’s just an excuse so that I can stop for breath. My mum eventually went on the oxygen cylinders and we moved her bed downstairs and then eventually took her to a home. You get to see what’s coming for you!
Bert recalled how his brother struggled with respiratory disease and consequent associations:
It’s different when you’ve been through it. You think ‘I’m going to finish up like that’, because he was really bad at the finish, that’s why I keep going back to the consultant because like she said there are always new things coming out. When they said I needed oxygen it reminded me of my brother and the way that he became bed bound.
Commencement of LTOT was viewed negatively by most participants, adding to their daily struggles. The view of Victor typifies responses:
You try to kid yourself that it’s short-term, but when the doctor said that you are normally on it for life, you start to think of it as a death sentence.
Only Gordon and Jane felt differently, for them the commencement of LTOT was seen as a ‘new lease of life’. They no longer felt socially isolated and house bound.
Blame
Participants tried to make sense of why they had developed chest disease, with many of them believing that their lifestyle choices, smoking behaviour and employment had contributed to their ill health. Vincent blamed his respiratory disease on smoking:
I was nudging 80–90 cigarettes a day and (cough) err, you know it certainly didn’t help (nervous laugh).
Bert, despite accepting the evidence that smoking can damage health, believed that health professionals fail to take occupational factors into consideration when diagnosing COPD:
You see I’ve also smoked, but I also think the work that I’ve done as brought it on as well, but nobody else thinks that. I mean I don’t want to claim anything don’t get me wrong. You know as soon as you say that you’ve smoked everyone blames the smoking and doesn’t think of the jobs that you’ve had. A lot of the jobs I had were very dusty.
Marie, like Bert and Pauline, had been informed by doctors that her chest symptoms were smoking-related, although she too believed that some of her symptoms may have been because of occupational irritants:
Well I did smoke but I don’t think I smoked many, although I suppose if I had one cigarette it’s enough. I wasn’t a very heavy smoker because I worked too hard for too long to smoke heavy really. I was a hairdresser; I can remember a couple of the perm waving solutions having a really bad effect on my chest. I can really remember thinking heavens above I think I’m going to damage my chest. I actually thought I’d have no lungs left, because they were very strong.
Michael too blamed his chest symptoms on work-related irritants as well as smoking:
I put it down to my job, you see, I’m a cabinet maker and it can be a dirty job, it’s a lot of dust and rubbish. I used to take snuff to try and clear my head.
Hidden disability
Several participants talked about respiratory disease being a hidden disability. There was a perception that because, people did not see people with COPD struggling all the time with breathing difficulties, they did not appreciate how chest problems affected their lives. Vincent described his chest disease as isolating:
When you live with chest problems you tend to become more of a recluse simply because you’ve got a disability. If you’ve got a disability that’s inside and you can’t see it you tend to turn inwards and inwards, because it’s your problem and you’ve got to deal with it. You see people, someone with no legs or one leg or one arm or one eye they see the disability. But they don’t see this disability until you start walking and then they suddenly realise that you can’t breathe. You don’t like talking about it because it becomes here he is again with his chest problem. You see if they could see into your lungs and get a demonstration they would start to understand.
Michael explained how he often felt that he was getting in the way of others:
You find yourself getting in the way of people and you apologise to them, I’m sorry but I’m a bit out of breath here and you make excuses for their ignorance. I would sooner tell a person that I had cancer I really would because then they would be more sympathetic. At least with cancer there is a chance of being cured.
Peter during the last interview explained how he believed that others did not appreciate the seriousness of Pauline’s health, in part because of her being effectively house bound because of the COPD and LTOT:
They don’t see much of her now you see because she doesn’t go out. When they do see her they comment on how well she looks. I can’t understand this, what’s baffling is how can you look so well and you’re not.
The researcher recorded in her reflective journal the following:
Why did this concern him so much, was it that he felt they did not believe that she was ill and thus perceived that they were uncaring? Or was it that by saying she looks well friends and neighbours were trying to be more positive and trying to lift her spirits and promote a sense of well-being?
Discussion
The participants in this study all expressed views on the changes that living with a long-term condition had placed on their lifestyle and quality of life. Both patients and carers shared their experiences of what it was like to live with COPD, the fear associated with disease and how their life was a struggle. They used the word ‘struggling’ to describe both their respiratory symptoms and their inability to perform simple everyday tasks. Despite the fact that all participants believed they struggled, it was surprising to find that some believed that living with chest disease was like living with a hidden disability. This perception of a hidden disability is in keeping with the findings of Kanervisto et al. (2007). This qualitative study carried out in Finland, with five patients with severe COPD and four carers, aimed to describe the experiences of people with severe COPD in their everyday lives by using the World Health Organisation’s International Classification of Functioning, Disability and Health (WHO 2002). The classifications used included; impairment of body functions and body structure, activities, participation and environmental factors. One of the findings of Kanervisto et al. (2007) relating to the environmental concepts, was a perception that people outside of the family did not really appreciate the significance and difficulties of living with COPD. It was perceived that, because the disease is not always visible, the individual with COPD can sometimes appear healthy and therefore other people do not always appreciate the seriousness of their illness.
None of the participants appeared to have found ways to embrace their condition or make positive changes to their lifestyle in an attempt to master and cope with their illness. Perhaps the lack of positive changes is in keeping with the view of Kanervisto et al. (2007, p. 1503), who suggest that having a long-term condition is like living with a ‘dominant and powerful’ unwanted family member, who threatens the life of both the patient and their carer.
Scharloo et al. (1998) suggest that acceptance encompasses a number of dimensions that the individual works through (see Box 1). However, as Lipowski (1983) indicates, the personal meaning and acceptance of illness can change, as the individual faces new lifestyle challenges and threats during their illness journey. This personal re-evaluation of the meaning of illness results in various levels of interchanging perceived negative and positive views on well being which thus impacts on the patient’s perception of disease. The findings in this study of self blame are not unique because others like Robinson (2005), Oliver (2001), Leventhal et al. (1980) have also noted links between self blame and chronic illness.
| Identity, the label placed on the disease and the symptoms associated with it |
| Causes, ideas about how one gets the disease |
| Consequences, the expected outcome and sequelae of the disease |
| Timeline, expectations about the duration of disease and its characteristic course |
| Controllability/cure, beliefs about the extent to which the disease is amenable to control or cure |
Interpreting the work of Scharloo et al. (1998) and Lipowski (1983, 1970), perhaps one of the roles for health professionals supporting patients with COPD and other long-term illnesses, is to try and identify the patient’s perceived point in their illness trajectory and assist them to develop positive strategies to help them shape their future management. This approach may help people to lead what they perceive as active and full lives, despite their advancing ill health. This is a view supported by Van Manen (1994, p. 7) who advocates that health professionals should endeavour to become more involved in patient’s experiences and support the patient to ‘recover a liveable relation with his or her psycho-physical being’.
Limitations
This study has addressed the issue of people with COPD living with LTOT and its findings may not therefore be generalisable beyond this small group of people. The small sample size, although appropriate to qualitative research, is not representative of all COPD patients experiences of LTOT and therefore findings may not be universal. However, the findings from this longitudinal study are supportive of other qualitative studies focusing on COPD and LTOT, which have identified themes of social isolation, self blame, loss previously noted in earlier research focusing on living with a long-term condition (Grant & Davis Lindsey 1997, Robinson 2005, Restrick et al. 1993) thereby the findings do offer some elements of transferability.
Relevance to clinical practice
What is evident from the participant’s experiences, in this study, of living with COPD and LTOT is that many really struggled to accept the changes in their functional ability and social activities. This lack of acceptance could have enhanced the perception of fatalism, loss and self blame. Health professionals need to be skilled in helping patients and carers to express their views of living with illness. Practitioners who are mindful of the enforced changes and personal losses that are associated with living with a long-term condition can help patients and carers to explore their meaning of illness and adapt positively to lifestyle changes.
Conclusion
The themes discussed with in this paper paint a very negative picture of living with COPD, as all of the participants described difficulties living with the disease. The introduction of oxygen appeared, for all but one couple, to increase the negativism associated with living with a life limiting incurable condition The participant’s experiences in this study highlight the need for health professionals to explore with patients/carers what it is like living with a long-term condition.
Contributions
Study design: KC; data collection and analysis: KC; manuscript preparation: KC.
