- Email: [email protected]
Breathlessness
Key Words Breathlessness, dyspnoea, dyspnea, qualitative, self.
23
by David Nicholls
Breathlessness A qualitative model of meaning
Summary This paper considers the related concepts of breathlessness and self-image. It argues that quantitative methods are based on dogma rather than methodological awareness and illustrates an alternative model. Using life history narratives and a grounded theory framework, the author argues that qualitative methodologies are the only ones capable of obtaining a true picture of the meaning and complexity of breathlessness. Examples from the author’s current research are used to illustrate these key arguments. Introduction ‘Breathlessness is one of the most frightening and distressing symptoms that a patient can experience and, like pain, can only be interpreted and reported by the person experiencing it’ (Van der Molen, 1995).
* It is a semantic point but one should not forget that dyspnoea itself is a medical construct unknown to most sufferers. Lay people use the word ‘breathlessness’, and it is the author’s view that in future they might come to mean different things. Dyspnoea would imply an objective, value neutral variable that can be manipulated under experimental conditions, while breathlessness implies a unique, contextually sensitive phenomenon as interpreted by the sufferer.
Nicholls, D (2000). ‘Breathlessness: A qualitative model of meaning’, Physiotherapy, 86, 1, 23-27.
Epidemiological data show that at least 500,000 people in the UK live with chronic breathlessness. This figure may however mask the wealth of unreported experience. For many people breathlessness is a fact of life, along with a smoker’s cough and osteoarthritic knees. It is tolerated and sublimated and there is evidence of massive underreporting of the symptom. Because of the difficulties in quantifying the experience, epidemiological data are unreliable. Functional scores, symptom checklists and outcome measures can only go some of the way to explain the effects of breathlessness on the sufferers, their families and society. We know very little, for instance, about the way in which a sufferer’s self-image affects the expression of symptoms. And yet this could play a crucial role in both illness and rehabilitation. This paper presents an unconventional approach to understanding the experience of breathlessness. Taking as a starting point the belief that each sufferer’s experiences are unique, the study uses qualitative research methods to analyse the meaning of breathlessness. The study has attempted to address the following questions:
■ How does a sufferer’s self-image affect the
way he or she experiences breathlessness? ■ How does the experience of
breathlessness affect the way a sufferer’s self-image develops? Background Dyspnoea is the most pervasive symptom in respiratory illness and a principal reason for consultation with a health care provider. Moody et al (1990) stated that ‘the occurrence of severe disability and death in chronic lung disease is related more closely to symptoms of breathlessness than any other single factor’. And yet the difficulties of measuring the phenomenon objectively make for unreliable statistics. It is known, for instance, that two sufferers can have the same lung function results and yet have very different experiences of health and illness. One will preserve a ‘healthy’ lifestyle; maintaining social networks, remaining in employment for longer, taking less medication, visiting a GP less often and needing fewer admissions to hospital. The other sufferer will become socially withdrawn, take more medication, rely more on primary and secondary care, retire from employment due to ill health earlier, and suffer greater psychological problems (Stark et al, 1982; Shandu, 1986; Schrier et al, 1990; Alonso et al, 1992; Eakin et al, 1993; Williams, 1993). Like lung function tests, other objective scores and scales exist in abundance, but their prevalence indicates a reluctance to explore the unique nature of the phenomenon of breathlessness. Far more effort has been put into defining a reliable, valid scoring system for quantifying a sufferer’s dyspnoea than any attempt to understand the experience *. The importance placed upon achieving a reliable and valid objective measurement Physiotherapy January 2000/vol 86/no 1
24
of breathlessness is confusing a basic fact. Breathlessness is a unique human phenomenon that can be understood and interpreted only by sufferers. In that sense no amount of objective complexity will ever obtain a true representation of a sufferer’s experience. Quantitative Research into Breathlessness Breathlessness is more than just a symptom, it is a phenomenon unique to the individual, bound up in his or her lived experience, hopes and aspirations, disappointments and frustrations. It is related to the perception of the sufferers’ place in society, within their families and intimate relationships. It is an organic, dynamic unstructured experience that can be understood only within the context of the sufferers’ lives. While quantitative research methods struggle to handle social phenomena like breathlessness (because of their innate diversity), qualitative methods thrive. It is surprising then that little work has been done into the meaning of breathlessness (Williams, 1993). There have, however, been parallel studies involving grounded theory (Glaser and Strauss, 1967; Glaser, 1992; Charmaz, 1983, 1997; Strauss and Corbin, 1997), narratives (Thompson, 1988; Reissman, 1993; Marshall and Rossman, 1995), and disability discourse (Swain et al, 1993; French, 1994), covering a range of other disabilities including traumatic brain injury (Nochi, 1998), rheumatoid arthritis (Bury, 1982) and mixed chronic illnesses (Charmaz, 1983). Williams (1993) has so far conducted the most significant qualitative study into the impact of chronic lung disease on the lifestyle of sufferers, but there are few other examples. A great deal more work has been undertaken into the impact of altered body image and self-concept (Bury, 1982, 1991; Fox, 1993, 1995; Dekkers, 1998). There has been a growing interest in disability research (most notably from French, 1994) for more than a decade, and academic research is beginning to have an impact on clinical practice. Qualitative research is essentially about investigating meaning. Much of the work within health care focuses on the social, psychological and environmental meaning of illness to sufferers and the community. Research has concentrated on redefining concepts of health and illness and finding methods that provide rigorous explanations. Physiotherapy January 2000/vol 86/no 1
Methodology The author’s own research attempts to develop a chronologically ordered social context for the discourse and a life history approach is taken to establish an individual, contextually situated story (Viney and Bousfield, 1991). Oral history methods (Thompson, 1988) are also used to allow interviewees to explore the cultural context of their experience and reflect on how their perception of events has been coloured by their chronic illness. Data are constructed using a grounded theory framework (Glaser and Strauss, 1967; Strauss and Corbin, 1997; Charmaz, 1995). Theory development and data collections are developed in synchrony (constant comparison method), data are coded and categorised to generate theories, and theoretical sampling techniques are used to direct recruitment of new subjects into the study. Grounded theory allows the development of asynchronous narratives among a heterogeneous population, and can be used to reflect necessary changes in healthcare. In this way grounded theory offers a framework to coalesce the various facets of disability discourse developed in the study. Method Data are collected mainly through extended narrative in-depth interviews and transcribed and analysed following a model described by Reissman (1993) and Hatch and Wisniewski (1995). Here transcript units are coded and categorised into themes. These themes form the basis of further interviews which seek to obtain the essence of the phenomena (Morse, 1989). It can be seen in the following transcripts that the data have many facets that support the notion that breathlessness is a complex, unique individual experience. All the subjects have developed a notion of ‘self’ alongside their illness. Their coping mechanisms have clearly been affected by their experiences and likewise, the expression of their illness is in part a reflection of their ‘self’. The following sample illustrates this point. Ruth is a 74-year-old woman who has suffered with chronic breathlessness from her earliest memory. She has been given a diagnosis of chronic asthma. Ruth … The independence comes from my
mom’s family I think, her mother was the same.
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David So do you chastise yourself when you come back home and you… Ruth Oh yes! David You’re cross with yourself. Ruth …call myself a stupid bitch or something…. David So you’re not kind to yourself…. Ruth Oh no, no. David …don’t mind telling yourself off? Ruth Oh no, I never....I’ll be quite honest
with you, I had both my children at home. I insisted I wouldn’t go into hospital because we’d got the National Health Service then. John was born 1953, Alice ‘57, and I should have gone into hospital. They were making you go into hospital at that period, and I fought it because the midwife was just around the corner. I had them both at home and I can honestly say I have never been to bed ill in my life. I will just not stay there. When I had pleurisy I wouldn’t go to bed, I’d sit in a chair, but I will not….I don’t know, I think it’s giving in when you go to bed. David Does that idea of being in bed… Ruth It might be the best place to be,
but it’s a sign that I’ve given in. David So have you ever been into hospital? Ruth Yes. David With your breathing? Ruth No, not with my breathing. David No? You’ve always fought that? But you’ve been into hospital for your D and C, you went into hospital with your thyroid problems…. Ruth Yes I was sent into a hospital when I
was having Alice because my blood pressure was up, she was born January 18 and my visit to the doctor was the day after Boxing Day. We’d had a house full of visitors, I’d done all the cooking for everybody and… David …and you were 81/2 months
pregnant! Ruth And I’d spring-cleaned the house
because I thought I wouldn’t have time to do it after the baby was born. I’d got a three-year-old, and when I went up to the surgery the doctor said to me, ‘have you been running?’ and I said ‘No’ and he said ‘Why leave it till the last minute?’ I said ‘I’ve been sat in the surgery an hour’, so he said ‘Well you’d better get on the couch, you’re very short of breath’, and he said ‘I’m very sorry about this, you’re going to have to go into hospital,
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Author and Address for Correspondence
your blood pressure’s up’ and I said ‘Oh please don’t send me into hospital’ and he said ‘I’m very sorry, you’re going to have to.’ I said ‘Well I can’t because I’ve got a three-year-old.’ I said ‘My mom lives in Doncaster’ (we were in Leeds). I said ‘I’ve just nobody to leave him with.’ He said ‘I’ll tell you what I’ll do, I’ll delay until tomorrow morning, nine o’clock, make your arrangements tonight and the ambulance will come for you at nine.’ So of course we got on the phone, my husband met my mom halfway – took John. I went into hospital, the doctor came to see me the second day, he wanted to know where I was, and I was in the bathroom, so he brought me out and he said to the nurse ‘Tie her down to the bed, put her in a straitjacket if necessary.’ He said ‘I’ve sent her in for a rest, don’t let her wander about because you won’t keep her in bed unless you tie her down.’ I can remember that quite well. Anyway I was only in about three days, but they found out that I was…iodine is it…what is it when you’re short of iodine? Very anaemic?
David A Nicholls MA GradDipPhys MCSP is a senior lecturer in the School of Health and Social Care, Sheffield Hallam University, Sheffield S7 2EH. This article was received on October 9, 1999, and accepted on November 17, 1999. Funding The Health and Social Care Research Centre, Sheffield Hallam University, provided partial support for the data collection for this research.
The logic of Ruth’s 'beliefs’ can only be understood in the context of her experience and no amount of complexity will allow a standardised quality of life questionnaire to appreciate it. In the following example, from an interview with William, again a 74-year-old chronic asthmatic, he details a critical incident. In this narrative he portrays quite frightening events in a calm, unruffled way, often laughing at times of extreme pathos. His attempts to downplay the seriousness of events are similar to Ruth’s, yet his life experiences are obviously unique to him. William When I… I suppose [long pause for thought] in the early fifties,… now this must be ‘52 or ‘53. 1952 or 1953, er … I had a motorbike and sidecar then and er … we went down to, stayed at Wells. We went touring the south of England and ended up in Wells, and I had a very bad attack there … and I really was in a bad way; very short of breath, and I had to get someone to kick up the motorbike for me – I hadn’t the strength, it was a 650 cc bike, and I then got on the bike and drove all the way back (to Sheffield) from Wells, which doesn’t seem much now, because you’d just get on the motorway and come here but the time I’m talking it would
Physiotherapy January 2000/vol 86/no 1
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take about six or eight hours. And during that time of course I hadn’t got to let the engine die on me [laughing] otherwise I wouldn’t have been able to start it again, and I drove back home and I was in a very bad way. In fact when I ... I was near Burton I nearly thought of getting off the bike, and phoning for my then … who was my brother in law … to come down there and drive me back, I was so bad. David Because you couldn’t breathe? William Couldn’t breathe. I was just sat on that bike hoping [laughs] I could keep going. David What is it like when you feel like
that? William Er, … it’s just a matter of hanging on, hanging on, your back aches, all your back and shoulders ache, this is I suppose just your lungs that ache, and er … just keeping your eye fixed ahead. That’s all, just carrying on as best you can, just knowing that it’s going to come to an end [laughs] but that’s it. David And how do you manage to breathe? William Very, very shallowly … yes … very shallow all the time, mm [reflective pause] very shallow and just, and I suppose really concentrating more on driving…yes…mm, that was a terrible experience, that was, but er … you know, but it’s ended and that was it.
Again this passage illustrates the unique nature of people’s experience and the importance of appreciating their reflection on events. After the data collection and transcription, the completed document is returned to each participant who reviews the account for accuracy, clarity, transparency and truthfulness and adds commentaries where additional clarification is required. This document forms the basis of the next interview. It acts as a prompt, a focus and a source of validity for the emerging theories. Theory development builds as the interview data are gathered, and as new theories emerge they are tested against codes generated from prior interviews and from data within the literature. To gain a rich source of data the study employs theoretical sampling (Coyne, 1997) to gather varied and extensive accounts of breathlessness. All subjects have to have experienced periodic or unremitting breathlessness (medically reported for more than two years) as a result of chronic obstructive pulmonary disease. Subjects Physiotherapy January 2000/vol 86/no 1
experiencing breathlessness as a result of cardiogenic, metaplastic or non-pulmonary conditions are excluded. The severity of organic disease is mixed and subjects may be using a variety of therapeutic agents (eg home oxygen, nebulisation, non-invasive ventilation). Subjects under 21 years of age are excluded so that the study covers breathlessness only in a population with mature lung function. All subjects are English speaking. This prevents misinterpretation through translation prior to transcription. Vulnerable adults and those with mental illness or learning difficulties are also excluded. Rigour associated with trustworthiness, appropriateness and adequacy is partly addressed through the constant comparison method (Glaser and Strauss, 1967), and through the transparency of the data. An additional safeguard has been employed in the pilot study; a small number of co-analysts are used to review the codes, categories and assertions arising from the data to ensure that unfounded assertions do not go unchecked. The co-analysts are all experts in either methodology or respiratory therapy. Discussion Breathlessness is clearly a profound health problem that drains a great deal of healthcare resources. The variety and complexity of the experience make for difficult analysis, but only if one persists in using the wrong tools for the task. Qualitative research methods are designed to analyse the meaning of phenomena and should be the method of choice for healthcare workers wishing to understand breathlessness. Many academic and clinical disciplines are embracing qualitative research as a way of increasing depth of meaning in their work. Medicine, nursing and the therapies are beginning to use these methods to explore the impact of social, environmental and cultural issues on the health of patients within their care. Qualitative research can offer therapists new perspectives and it is hoped this study outline provides an example of an effective research practice. Breathlessness is a unique human experience that can only be interpreted by sufferers. We as clinicians/researchers have a duty to attempt to understand the phenomenon. Even though we may be able to recreate the physiological conditions to replicate breathlessness, unless we have
Professional articles
grown up with it, had it change our lives, or fought it day-in, day-out, we cannot appreciate its impact. Qualitative research methodologies are beginning to shine light into this area, however, and new
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understanding of the phenomenon is growing. Clinicians and researchers should embrace more ‘sufferer-centred’ research approaches and through them bring their research closer to their clinical practice.
References Alonso, J, Anto, J M, Gonzalez, M et al (1992). ‘Measurement of a general health status of non-oxygen-dependent chronic obstructive pulmonary disease patients', Medical Care, 30, supplement 5, 125-135. Bury, M (1982). ‘Chronic illness and biographical disruption’, Sociology of Health and Illness, 4, July 2, 167-182. Bury, M.(1991). ‘The sociology of chronic illness: A review of research and prospects’, Sociology of Health and Illness, 13, 4, 451-468. Charmaz, K (1983). ‘Loss of self: A fundamental form of suffering in the chronically ill’, Sociology of Health and Illness, 5, 2, 168-195. Charmaz, K (1995). ‘Grounded theory’ in: Smith, J et al (eds) Rethinking Methods in Psychology, Sage, London. Charmaz, K (1997). ‘Identity dilemmas of chronically ill men’ in: Strauss, A and Corbin, J (eds) Grounded Theory in Practice, Sage, London. Coyne, I T (1997). ‘Sampling in qualitative research: Purposeful and theoretical sampling; merging or clear boundaries?’ Journal of Advanced Nursing, 26, 623-630. Dekkers, W (1998). ‘Hermeneutics and the experiences of the body: The case of low back pain’, Theory in Medical Bioethics, 193, 3, 277-293. Eakin, E G, Kaplan, R M, and Reis, A L (1993). ‘Measurement of dyspnoea in chronic obstructive pulmonary disease’, Quality of Life Research, 2, 181191. Fox, N J (1993). Postmodernism, Sociology and Health, Open University Press, Buckingham. Fox, N J (1995). ‘Postmodern perspectives on care: The vigil and the gift’, Critical Social Policy, 15, 107-125. French, S (1994). On Equal Terms: Working with disabled people, Butterworth-Heinemann, Oxford. Glazer, B G (1992). Basics of Grounded Theory Analysis, Sociology Press, California. Glazer, B G and Strauss, A L (1967). The Discovery of Grounded Theory, Aldine, Chicago. Hatch, J A and Wisniewski, R (1995). ‘Life history and narrative: Questions, issues, and exemplary works’, Life History and Narrative, Falmer Press, London, pages 113-136.
Marshall, C and Rossman, G R (1995). Designing Qualitative Research, Sage, California, Moody, L, McCormick, K and Williams, A (1990). ‘Disease and symptom severity, functional status, and the quality of life in chronic bronchitis and emphysema (CBE)’, Journal of Behavioural Medicine, 13, 3, 297-306. Morse, J M (1989). Qualitative Nursing Research: A contemporary dialogue. Aspen, Rockville, Maryland. Nochi, M (1998). ‘“Loss of self” in the narratives of people with traumatic brain injury: A qualitative analysis’, Social Science and Medicine, 46, 7, 869-878. Reissman, C K (1993). Narrative Analysis, Sage, London. Schrier, A C, Dekker, F W, Kaptein, A A and Dijkman, J H (1990). ‘Quality of life in elderly patients with chronic non-specific lung disease seen in family practice’, Chest, 90, 894-899.
Key Messages ■ Breathlessness is a complex individual experience that can be interpreted and explained only by the sufferer. ■ Attempts at deriving reliable and valid measures of the experience are disappointing. ■ Qualitative methods thrive on individual differences and unique human experiences. ■ Healthcare workers should embrace qualitative methodologies as a way of analysing healthcare needs, delivery and outcome.
Shandu, H (1986). ‘Psychosocial issues in chronic obstructive pulmonary disease’, Clinics in Chest Medicine, 7, 629-642. Stark, R D, Gambles, S A and Chattergee, S S (1982). ‘An exercise test to assess clinical dyspnoea: Estimation of reproducibility and sensitivity’, British Journal of Diseases of the Chest, 76, 269 - 278. Strauss, A and Corbin, J (1997). Grounded Theory in Practice, Sage, London. Swain, J, Finkelstein, V, French, S and Oliver, M (1993). Disabling Barriers -- Enabling environments, Sage, London. Thompson, P (1988). The Voice of the Past: Oral history, Open University Press, Buckingham. Van der Molen, B (1995). ‘Dyspnoea: A study of measurement instruments for the assessment of dyspnoea and their application for patients with advanced cancer’, Journal of Advanced Nursing, 22, 948-956. Viney, L L and Bousefield, L (1991). ‘Narrative analysis: A method of psychosocial research for AIDS-affected people’, Social Science and Medicine, 32, 7, 757-765. Williams, S (1993). Chronic Respiratory Disease, Routledge, London.
Physiotherapy January 2000/vol 86/no 1
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by David Nicholls
Breathlessness A qualitative model of meaning
Summary This paper considers the related concepts of breathlessness and self-image. It argues that quantitative methods are based on dogma rather than methodological awareness and illustrates an alternative model. Using life history narratives and a grounded theory framework, the author argues that qualitative methodologies are the only ones capable of obtaining a true picture of the meaning and complexity of breathlessness. Examples from the author’s current research are used to illustrate these key arguments. Introduction ‘Breathlessness is one of the most frightening and distressing symptoms that a patient can experience and, like pain, can only be interpreted and reported by the person experiencing it’ (Van der Molen, 1995).
* It is a semantic point but one should not forget that dyspnoea itself is a medical construct unknown to most sufferers. Lay people use the word ‘breathlessness’, and it is the author’s view that in future they might come to mean different things. Dyspnoea would imply an objective, value neutral variable that can be manipulated under experimental conditions, while breathlessness implies a unique, contextually sensitive phenomenon as interpreted by the sufferer.
Nicholls, D (2000). ‘Breathlessness: A qualitative model of meaning’, Physiotherapy, 86, 1, 23-27.
Epidemiological data show that at least 500,000 people in the UK live with chronic breathlessness. This figure may however mask the wealth of unreported experience. For many people breathlessness is a fact of life, along with a smoker’s cough and osteoarthritic knees. It is tolerated and sublimated and there is evidence of massive underreporting of the symptom. Because of the difficulties in quantifying the experience, epidemiological data are unreliable. Functional scores, symptom checklists and outcome measures can only go some of the way to explain the effects of breathlessness on the sufferers, their families and society. We know very little, for instance, about the way in which a sufferer’s self-image affects the expression of symptoms. And yet this could play a crucial role in both illness and rehabilitation. This paper presents an unconventional approach to understanding the experience of breathlessness. Taking as a starting point the belief that each sufferer’s experiences are unique, the study uses qualitative research methods to analyse the meaning of breathlessness. The study has attempted to address the following questions:
■ How does a sufferer’s self-image affect the
way he or she experiences breathlessness? ■ How does the experience of
breathlessness affect the way a sufferer’s self-image develops? Background Dyspnoea is the most pervasive symptom in respiratory illness and a principal reason for consultation with a health care provider. Moody et al (1990) stated that ‘the occurrence of severe disability and death in chronic lung disease is related more closely to symptoms of breathlessness than any other single factor’. And yet the difficulties of measuring the phenomenon objectively make for unreliable statistics. It is known, for instance, that two sufferers can have the same lung function results and yet have very different experiences of health and illness. One will preserve a ‘healthy’ lifestyle; maintaining social networks, remaining in employment for longer, taking less medication, visiting a GP less often and needing fewer admissions to hospital. The other sufferer will become socially withdrawn, take more medication, rely more on primary and secondary care, retire from employment due to ill health earlier, and suffer greater psychological problems (Stark et al, 1982; Shandu, 1986; Schrier et al, 1990; Alonso et al, 1992; Eakin et al, 1993; Williams, 1993). Like lung function tests, other objective scores and scales exist in abundance, but their prevalence indicates a reluctance to explore the unique nature of the phenomenon of breathlessness. Far more effort has been put into defining a reliable, valid scoring system for quantifying a sufferer’s dyspnoea than any attempt to understand the experience *. The importance placed upon achieving a reliable and valid objective measurement Physiotherapy January 2000/vol 86/no 1
24
of breathlessness is confusing a basic fact. Breathlessness is a unique human phenomenon that can be understood and interpreted only by sufferers. In that sense no amount of objective complexity will ever obtain a true representation of a sufferer’s experience. Quantitative Research into Breathlessness Breathlessness is more than just a symptom, it is a phenomenon unique to the individual, bound up in his or her lived experience, hopes and aspirations, disappointments and frustrations. It is related to the perception of the sufferers’ place in society, within their families and intimate relationships. It is an organic, dynamic unstructured experience that can be understood only within the context of the sufferers’ lives. While quantitative research methods struggle to handle social phenomena like breathlessness (because of their innate diversity), qualitative methods thrive. It is surprising then that little work has been done into the meaning of breathlessness (Williams, 1993). There have, however, been parallel studies involving grounded theory (Glaser and Strauss, 1967; Glaser, 1992; Charmaz, 1983, 1997; Strauss and Corbin, 1997), narratives (Thompson, 1988; Reissman, 1993; Marshall and Rossman, 1995), and disability discourse (Swain et al, 1993; French, 1994), covering a range of other disabilities including traumatic brain injury (Nochi, 1998), rheumatoid arthritis (Bury, 1982) and mixed chronic illnesses (Charmaz, 1983). Williams (1993) has so far conducted the most significant qualitative study into the impact of chronic lung disease on the lifestyle of sufferers, but there are few other examples. A great deal more work has been undertaken into the impact of altered body image and self-concept (Bury, 1982, 1991; Fox, 1993, 1995; Dekkers, 1998). There has been a growing interest in disability research (most notably from French, 1994) for more than a decade, and academic research is beginning to have an impact on clinical practice. Qualitative research is essentially about investigating meaning. Much of the work within health care focuses on the social, psychological and environmental meaning of illness to sufferers and the community. Research has concentrated on redefining concepts of health and illness and finding methods that provide rigorous explanations. Physiotherapy January 2000/vol 86/no 1
Methodology The author’s own research attempts to develop a chronologically ordered social context for the discourse and a life history approach is taken to establish an individual, contextually situated story (Viney and Bousfield, 1991). Oral history methods (Thompson, 1988) are also used to allow interviewees to explore the cultural context of their experience and reflect on how their perception of events has been coloured by their chronic illness. Data are constructed using a grounded theory framework (Glaser and Strauss, 1967; Strauss and Corbin, 1997; Charmaz, 1995). Theory development and data collections are developed in synchrony (constant comparison method), data are coded and categorised to generate theories, and theoretical sampling techniques are used to direct recruitment of new subjects into the study. Grounded theory allows the development of asynchronous narratives among a heterogeneous population, and can be used to reflect necessary changes in healthcare. In this way grounded theory offers a framework to coalesce the various facets of disability discourse developed in the study. Method Data are collected mainly through extended narrative in-depth interviews and transcribed and analysed following a model described by Reissman (1993) and Hatch and Wisniewski (1995). Here transcript units are coded and categorised into themes. These themes form the basis of further interviews which seek to obtain the essence of the phenomena (Morse, 1989). It can be seen in the following transcripts that the data have many facets that support the notion that breathlessness is a complex, unique individual experience. All the subjects have developed a notion of ‘self’ alongside their illness. Their coping mechanisms have clearly been affected by their experiences and likewise, the expression of their illness is in part a reflection of their ‘self’. The following sample illustrates this point. Ruth is a 74-year-old woman who has suffered with chronic breathlessness from her earliest memory. She has been given a diagnosis of chronic asthma. Ruth … The independence comes from my
mom’s family I think, her mother was the same.
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David So do you chastise yourself when you come back home and you… Ruth Oh yes! David You’re cross with yourself. Ruth …call myself a stupid bitch or something…. David So you’re not kind to yourself…. Ruth Oh no, no. David …don’t mind telling yourself off? Ruth Oh no, I never....I’ll be quite honest
with you, I had both my children at home. I insisted I wouldn’t go into hospital because we’d got the National Health Service then. John was born 1953, Alice ‘57, and I should have gone into hospital. They were making you go into hospital at that period, and I fought it because the midwife was just around the corner. I had them both at home and I can honestly say I have never been to bed ill in my life. I will just not stay there. When I had pleurisy I wouldn’t go to bed, I’d sit in a chair, but I will not….I don’t know, I think it’s giving in when you go to bed. David Does that idea of being in bed… Ruth It might be the best place to be,
but it’s a sign that I’ve given in. David So have you ever been into hospital? Ruth Yes. David With your breathing? Ruth No, not with my breathing. David No? You’ve always fought that? But you’ve been into hospital for your D and C, you went into hospital with your thyroid problems…. Ruth Yes I was sent into a hospital when I
was having Alice because my blood pressure was up, she was born January 18 and my visit to the doctor was the day after Boxing Day. We’d had a house full of visitors, I’d done all the cooking for everybody and… David …and you were 81/2 months
pregnant! Ruth And I’d spring-cleaned the house
because I thought I wouldn’t have time to do it after the baby was born. I’d got a three-year-old, and when I went up to the surgery the doctor said to me, ‘have you been running?’ and I said ‘No’ and he said ‘Why leave it till the last minute?’ I said ‘I’ve been sat in the surgery an hour’, so he said ‘Well you’d better get on the couch, you’re very short of breath’, and he said ‘I’m very sorry about this, you’re going to have to go into hospital,
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Author and Address for Correspondence
your blood pressure’s up’ and I said ‘Oh please don’t send me into hospital’ and he said ‘I’m very sorry, you’re going to have to.’ I said ‘Well I can’t because I’ve got a three-year-old.’ I said ‘My mom lives in Doncaster’ (we were in Leeds). I said ‘I’ve just nobody to leave him with.’ He said ‘I’ll tell you what I’ll do, I’ll delay until tomorrow morning, nine o’clock, make your arrangements tonight and the ambulance will come for you at nine.’ So of course we got on the phone, my husband met my mom halfway – took John. I went into hospital, the doctor came to see me the second day, he wanted to know where I was, and I was in the bathroom, so he brought me out and he said to the nurse ‘Tie her down to the bed, put her in a straitjacket if necessary.’ He said ‘I’ve sent her in for a rest, don’t let her wander about because you won’t keep her in bed unless you tie her down.’ I can remember that quite well. Anyway I was only in about three days, but they found out that I was…iodine is it…what is it when you’re short of iodine? Very anaemic?
David A Nicholls MA GradDipPhys MCSP is a senior lecturer in the School of Health and Social Care, Sheffield Hallam University, Sheffield S7 2EH. This article was received on October 9, 1999, and accepted on November 17, 1999. Funding The Health and Social Care Research Centre, Sheffield Hallam University, provided partial support for the data collection for this research.
The logic of Ruth’s 'beliefs’ can only be understood in the context of her experience and no amount of complexity will allow a standardised quality of life questionnaire to appreciate it. In the following example, from an interview with William, again a 74-year-old chronic asthmatic, he details a critical incident. In this narrative he portrays quite frightening events in a calm, unruffled way, often laughing at times of extreme pathos. His attempts to downplay the seriousness of events are similar to Ruth’s, yet his life experiences are obviously unique to him. William When I… I suppose [long pause for thought] in the early fifties,… now this must be ‘52 or ‘53. 1952 or 1953, er … I had a motorbike and sidecar then and er … we went down to, stayed at Wells. We went touring the south of England and ended up in Wells, and I had a very bad attack there … and I really was in a bad way; very short of breath, and I had to get someone to kick up the motorbike for me – I hadn’t the strength, it was a 650 cc bike, and I then got on the bike and drove all the way back (to Sheffield) from Wells, which doesn’t seem much now, because you’d just get on the motorway and come here but the time I’m talking it would
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take about six or eight hours. And during that time of course I hadn’t got to let the engine die on me [laughing] otherwise I wouldn’t have been able to start it again, and I drove back home and I was in a very bad way. In fact when I ... I was near Burton I nearly thought of getting off the bike, and phoning for my then … who was my brother in law … to come down there and drive me back, I was so bad. David Because you couldn’t breathe? William Couldn’t breathe. I was just sat on that bike hoping [laughs] I could keep going. David What is it like when you feel like
that? William Er, … it’s just a matter of hanging on, hanging on, your back aches, all your back and shoulders ache, this is I suppose just your lungs that ache, and er … just keeping your eye fixed ahead. That’s all, just carrying on as best you can, just knowing that it’s going to come to an end [laughs] but that’s it. David And how do you manage to breathe? William Very, very shallowly … yes … very shallow all the time, mm [reflective pause] very shallow and just, and I suppose really concentrating more on driving…yes…mm, that was a terrible experience, that was, but er … you know, but it’s ended and that was it.
Again this passage illustrates the unique nature of people’s experience and the importance of appreciating their reflection on events. After the data collection and transcription, the completed document is returned to each participant who reviews the account for accuracy, clarity, transparency and truthfulness and adds commentaries where additional clarification is required. This document forms the basis of the next interview. It acts as a prompt, a focus and a source of validity for the emerging theories. Theory development builds as the interview data are gathered, and as new theories emerge they are tested against codes generated from prior interviews and from data within the literature. To gain a rich source of data the study employs theoretical sampling (Coyne, 1997) to gather varied and extensive accounts of breathlessness. All subjects have to have experienced periodic or unremitting breathlessness (medically reported for more than two years) as a result of chronic obstructive pulmonary disease. Subjects Physiotherapy January 2000/vol 86/no 1
experiencing breathlessness as a result of cardiogenic, metaplastic or non-pulmonary conditions are excluded. The severity of organic disease is mixed and subjects may be using a variety of therapeutic agents (eg home oxygen, nebulisation, non-invasive ventilation). Subjects under 21 years of age are excluded so that the study covers breathlessness only in a population with mature lung function. All subjects are English speaking. This prevents misinterpretation through translation prior to transcription. Vulnerable adults and those with mental illness or learning difficulties are also excluded. Rigour associated with trustworthiness, appropriateness and adequacy is partly addressed through the constant comparison method (Glaser and Strauss, 1967), and through the transparency of the data. An additional safeguard has been employed in the pilot study; a small number of co-analysts are used to review the codes, categories and assertions arising from the data to ensure that unfounded assertions do not go unchecked. The co-analysts are all experts in either methodology or respiratory therapy. Discussion Breathlessness is clearly a profound health problem that drains a great deal of healthcare resources. The variety and complexity of the experience make for difficult analysis, but only if one persists in using the wrong tools for the task. Qualitative research methods are designed to analyse the meaning of phenomena and should be the method of choice for healthcare workers wishing to understand breathlessness. Many academic and clinical disciplines are embracing qualitative research as a way of increasing depth of meaning in their work. Medicine, nursing and the therapies are beginning to use these methods to explore the impact of social, environmental and cultural issues on the health of patients within their care. Qualitative research can offer therapists new perspectives and it is hoped this study outline provides an example of an effective research practice. Breathlessness is a unique human experience that can only be interpreted by sufferers. We as clinicians/researchers have a duty to attempt to understand the phenomenon. Even though we may be able to recreate the physiological conditions to replicate breathlessness, unless we have
Professional articles
grown up with it, had it change our lives, or fought it day-in, day-out, we cannot appreciate its impact. Qualitative research methodologies are beginning to shine light into this area, however, and new
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understanding of the phenomenon is growing. Clinicians and researchers should embrace more ‘sufferer-centred’ research approaches and through them bring their research closer to their clinical practice.
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Key Messages ■ Breathlessness is a complex individual experience that can be interpreted and explained only by the sufferer. ■ Attempts at deriving reliable and valid measures of the experience are disappointing. ■ Qualitative methods thrive on individual differences and unique human experiences. ■ Healthcare workers should embrace qualitative methodologies as a way of analysing healthcare needs, delivery and outcome.
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