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Owton, H, Allen-Collinson, J and Siriwardena, A N (2015) Using a narrative approach in clinical practice to facilitate change in asthma patients, Chest. Online early: http://journal.publications.chestnet.org/article.aspx?articleid=2210009
Title: Using a narrative approach to enhance clinical care for
patients with asthma
Dr Helen Owton, PhD, C Psychol, The Open University, UK.
Dr Jacquelyn Allen-Collinson, PhD, University of Lincoln, UK
Prof A. Niroshan Siriwardena, MBBS MMedSci PhD FRCGP, University
of Lincoln, UK
CORRESPONDENCE TO: Helen Owton, PhD, CPsychol, Th e Open
University, Childhood, Youth, and Sport, Walton Hall, Milton Keynes,
MK7 6AA, England; e-mail: [email protected]
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Abbreviations List
NICE - National Institute for Health and Clinical Excellence, UK
NHLBI - National Heart, Lung and Blood Institute, US
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Abstract
Background: There are currently over 230 million people in the world with asthma,
and asthma attacks result in the hospitalisation of a sufferer every 7 minutes. The
National Heart, Lung, and Blood Institute outlines four components of clinical
practice guidelines for the diagnosis and management of asthma which tends to take a
biomedical focus: (i) measures of assessment and monitoring, obtained by objective
tests, physical examination, patient history and patient report, to diagnose and assess
the characteristics and severity of asthma and to monitor whether asthma control is
achieved and maintained; (ii) education for a partnership in asthma care; (iii) control
of environmental factors and comorbid conditions that affect asthma; (iv)
pharmacologic therapy. Many national guidelines include providing patients with
asthma with: (i) written action plans; (ii) inhaler technique training; (iii) structured
annual reviews.
The problem: Although current guidelines help improve clinical processes of care for
asthma, there is also a need to improve self-care of asthma by empowering
individuals to take more control of their condition. There is a growing appreciation
that a narrative approach with patients with asthma, which focuses on the illness
experience and aims to enhance patient-clinician understanding, might improve self-
care.
Solutions:We explore how a framework for clinicians to listen to patients’ stories,
developed from research on individuals with asthma, might enhance communication,
improve patient-clinician relationship, and foster better patient self-care.
Conclusions: The paper closes with the implications of this approach for clinical
practice and future research.
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Using a narrative approach in clinical practice to facilitate change in asthma
patients
Asthma
It is estimated that there are 235 million people in the world with asthma,1
yet asthma
is under-diagnosed and under-treated, constituting a global health challenge. Asthma
creates a substantial burden for individuals and families, and has the potential greatly
to limit people’s activities throughout their lifetime. International research suggests
that poor asthma self-care is responsible for exacerbating asthma symptoms,
contributing to asthma attacks and also to deaths from asthma2 and asthma-related
conditions.3,4
Asthma’s myriad symptoms include cough, wheeze, chest tightness and
breathlessness are caused by airways inflammation.5 The National Heart, Lung, and
Blood Institute6 outlines four components of clinical practice guidelines for the
diagnosis and management of asthma: (i) measures of assessment and monitoring, to
assess the characteristics and severity of asthma, and to monitor whether asthma
control is being achieved and maintained; (ii) education for a partnership in asthma
care; (iii) control of environmental factors and comorbid conditions; (iv)
pharmacologic therapy. Many national guidelines7 include providing asthma patients
with: (i) written action plans; (ii) inhaler technique training; (iii) structured annual
reviews. Given high numbers of hospitalizations from asthma attacks and the risk of
a fatal asthma attack, the primary goal in most clinical practice with asthma patients is
to try and ascertain ways to control the symptoms of asthma with the use of
medication.6
The use of guidelines and a biomedical, clinician-centered approach to
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management of asthma can improve clinical care, but to improve outcomes further
there is also a need to improve self-care for asthma. The recent call for a narrative
turn in medicine,8 might improve clinicians’ understanding of the complex storied
aspects of clinical work in patients with asthma thereby helping sufferers improve
self-care.
A turn to narrative medicine
Asthma clinicians usually spend time to ensure that patients are accurately diagnosed,
trained and assessed on their inhaler technique, peak flow is measured, and patients
are given the correct treatment and the best care possible, which often results in
improved outcomes for patients. Further to enhance treatment and patient care, a
narrative approach highlights the importance of actively listening to stories about
patients’ asthma. Empirical evidence of the benefits of narrative medicine is
encouraging,9 In relation to asthma patients specifically, Hatem and Rider cite clinical
studies that show significant improvement in lung functions when patients draw on
narrative to convey their personal experiences.9,10
Doctors and patients often draw upon different types of stories. Doctors’ stories are
interpreted through a specific narrative frame, one contoured by a biomedical
framework. Similarly, patient stories might depend heavily on repetition of what it is
that physicians say.11
Within this narrative, patients play a defined role, one that many
ill people are willing to fit into without question, and almost all do so when
required.12
Clinicians can, however, help challenge rigid narrative roles by asking
open-ended questions: “How can I help you today?’ and “What seems to be the
problem?” Patients’ responses to these questions often involve recounting a story
about what the problem is, when their problems began and discussions of symptoms,
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suffering and health beliefs. Importantly, doctors then need to pay close analytic
attention to these stories.
Although the medical re-authoring of a patient’s story is not necessarily problematic
in itself, patient stories and doctor stories often do not work well together,13
which
might potentially lead to patients becoming angry and rejecting medical narratives of
their illness because of the (often) dehumanizing focus of medical narratives.8 In
refusing to be reduced to ‘clinical material’ in the construction of the medical text,
patients are asserting their voices.12
Advocates of the narrative approach in healthcare settings8, 12, 14-21,
argue for a
move beyond mechanical understandings of the body, and a return to the lived illness
experience as a way effectively to bridge the gap between patient and clinician.
Indeed, when exploring stories of sickness22
is the idea that a good story is central in
what clinicians refer to as the placebo effect because it provides: (1) an explanation
consistent with the person’s worldview, (2) a connection to a community of
practitioners and concerned others who share this worldview, and (3) a sense of
mastery and control over the experience.
Clinicians might therefore also enhance their clinical practice by being aware -
through the lens of narrative theory - of different narratives that asthma patients may
tell, because the more stories they know about, the greater the potential for helping
people write action plans,7 which may assist them in the process of restorying their
lives. With narrative competency clinicians may enhance their ability to understand
their patients’ experience of illness more fully.23, 8
Teaching trainees the skills of close reading and listening to patient narratives
means that these medical trainees are transferring the basic skills of clinical attention,
by which doctors, nurses, and allied health and social care professionals might
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competently absorb information that their patients and colleagues have to impart.14, 24
This can enhance the way bodies, selves and storylines are listened to and then
responded to, ethically and dutifully, and means that clinicians stay with the
emotional and personal complexities of illness.8,14
When clinicians develop narrative
competency they have the capacity to acknowledge, interpret and make meaning of
illness stories.24
Whilst a narrative approach appears to be a relatively new
phenomenon in medicine, much was historically learnt about conditions through
personal narratives.
Asthma narratives
Personal narratives of asthma experiences have traditionally informed medical
practitioners for many centuries. In the 12th
century, for example, a comprehensive
account was written in Arabic by Moshe ben Maimon (Maimonides, 1138-1204).25
Thus, up until the 16th
century, various observers of the disease (e.g., Galen, 129-
199AD) contributed to a treatise on the prevention, diagnosis, and treatment of
asthma.26
It was in the 17th
century, an asthma, was viewed as a condition in its own
right, in part, due to the pivotal piece of work in 1698 by John Floyer (1649-1734), an
English physician, who published work on the symptoms, causes, and treatment of
asthma. It was Floyer’s treatise that constituted a central point of reference for
subsequent authors and for clinical practice.27
These early medical texts included
accounts of the author’s own pain and suffering and continued to shape clinical
initiatives and medical writing.27
Additionally, Hyde Salter (1823-71) wrote one of
the most influential 19th
century texts on asthma in 1860, based on his own account of
the disease as well as those of his patients.27
Subsequently, however, clinical reliance
on personal observations and accounts of individuals started to recede.27
Although
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during the early 1800s asthma was rarely mentioned in medical literature, during the
19th
and 20th
centuries, personal narratives of disease and the sense of identity and
meaning often previously shared by doctor and patient were increasingly marginalised
and are noted as increasingly lacking.28, 29
Medical understandings of, and treatments for, asthma have often shifted
dramatically across time, whereas the physical manifestations, existential impact,
descriptive language, and symbolic significance of asthma have remained
comparatively constant.26
Therefore, a narrative approach might enhance
understanding and help practitioners identify how best to assist patients with asthma.
The diagnosis of asthma can constitute a rupturing and threatening event,
disrupting the routine processes of a person’s life; this is what is referred to as a
disrupted body project.30
As individuals engage in the task of constructing past
events through personal narratives, they also start the dynamic process of (re)claiming
identities and (re)constructing their own lives.31
The metaphor of narrative wreckage
seems to characterise such experiences.12
The problem when this occurs is that people
are left needing a new map for their lives and a need to restory the self.12, 21
Predictive testing for asthma conditions may provide patients with an opportunity to
know one’s fate, at least to some degree, but patients may also encounter
psychological and emotional difficulties in receiving this information.12
A narrative approach was employed to investigate breathlessness in chronic
obstructive pulmonary disease and the importance of trust apparent in patients’
narratives was highlighted.32
A narrative approach informs health personnel about the
patient’s experiences and the relationship between patient and caregiver.32
Indeed,
narrative approaches are becoming a promising combination for clinicians by
enhancing their clinical practice and as a dynamic technique for motivating and
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supporting health-behaviour change32
In an extensive review,33
a number of studies,
reviews and meta-analyses examined the impact of narrative versus statistical
evidence on persuasion, perceived usefulness, self-efficacy, asserting that narrative
communication could be an effective tool for promoting health behaviour change.
How best to use narrative approaches in healthcare setting remains currently of great
research interest. Below, the use of a research-based typology is explored in relation
to patients with asthma.
Asthma typology
An asthma identity typology or model was developed34
based on three ideal types
conformers, contesters, and creators. It is important to note that the ideal type never
seeks to claim validity in terms of a reproduction of, or a direct correspondence with
social reality.35
It is important to stress the fluidity and context-dependency of the
types; people do not always fit neatly in the typology and may be a mixture depending
on the circumstances.12
Furthermore, they may cross the categories depending upon
time/context. At certain times, people may change from one dominant aspect to
another, for example, during the period of winter, when asthma may flare up in some
patients. There is not scope in this article to go into detail of the typology, which is
addressed elsewhere.34
Nonetheless, a discussion on metaphors may assist in the
understanding of working with patients with asthma as a way to develop a written
action plan and, fundamentally, to develop an understanding of the patient’s lived
experience of illness.
Metaphors and narrative tone
The human body serves as a rich source of metaphorical thought and language. In
research34
most participants who spoke of an asthma attack appeared to experience
panic, fear and anxiety, particularly when they could not get the air out. Some used
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visceral metaphors, particularly, highlighting the tightness and choking nature of
asthma. Conversely, those who spoke of episodes or slow onsets of asthma or
bronchoconstriction seemed to experience fewer feelings of anxiety, panic and fear.
The way participants speak metaphorically about their asthma may well have
implications for the way they manage their asthma.36
An exploration of metaphors in
individuals’ narratives of asthma may provide clinicians with a key indicator of how
patients are living and coping with asthma.37
For example, talk of beating it,
overcoming asthma, fighting it, struggling, contesting, battling, fixing it, asthma
attacks or curing it might highlight the way the individual is fighting asthma. The
metaphor of fighting illness, not lying down to it, and overcoming adversity, is
pervasive in many accounts of illness in western society. Fighting illness is a way of
talking about it, which is strongly culturally approved.37
Metaphors help us to
understand how humans make and shape meaning.37
One study38
in particular found
that narratives of self-reliance and comeback strategies were coping mechanisms for
young people (11-16yrs) in managing chronic illness.
Furthermore, the tone of a personal narrative is perhaps the most pervasive feature.39
The tone is conveyed both in the content of the story as well as the form or manner in
which it is told; it is both the whats and the hows.40
For example, the tone could be
optimistic (hopeful that things will improve), progressive (moving forward),
pessimistic (things perceived in a negative light), or regressive (deterioration or
decline).
Implications for practice
Helping individuals to talk about their asthma, asthma attack or asthma episode might
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assist healthcare practitioners to understand how a patient is handling their condition,
and indeed how the narrative may be helping or hindering positive healthcare
behaviours. Crucially, this might enable an alternative narrative map to be offered;
one which the patient might previously have been unaware of, and which could have
direct and powerful health benefits. Conversation analysis of doctor-patient
consultations is providing insights into the effects of narratives on patients and
clinicians.41
Clinicians can facilitate ways in which narratives are listened to by adopting a
patient-centered consulting style rather than the traditional biomedical approach that
focuses on eliciting answers from patients to questions posed by practitioners. A
patient-centered approach in contrast involves active listening (rather than silence)
from the practitioner, to enable patients to tell their story. It involves both patient and
practitioner actively contributing to develop the story in a way that is helpful for the
patient, and crucially involves understanding the wider context in which patient,
practitioner and environment all contribute to the story. Patients contribute through
their personal experience of the complexity of their illness, bringing to the
consultation their health beliefs and context, and communicating their own agenda.
Doctors contribute a range of consultation skills. Both are affected by current mood,
and environmental factors such as the time available. Importantly, this perspective
involves exchanging information, agreeing a problem formulation and sharing
decisions about treatment depending on the needs of the patient and the nature of the
problem (see also Figure 1).42
Insert Figure 1 here
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This approach requires skills and learning from both patient and practitioner,
but particularly from the practitioner. Such skills, extensively described in the clinical
consultation literature, include giving patients time (the golden minute) to tell their
story, non-verbal encouragement (e.g. nodding), verbal prompts (e.g. echoing) and
responding to cues. Understanding the patient’s story involves listening to their
beliefs and concerns about their health, eliciting from where these beliefs have arisen
from (e.g. previous experience, other professionals, relatives, friends, and the media)
and what the patient expects from the consultation. This approach provides
opportunities to respond to patients’ needs and, when required, to modify and reshape
those patient stories that are unhelpful - or potentially even harmful - to those that
encourage better prevention behaviours, health promotion, self-care and help-seeking
for asthma.43
Such an approach is particularly important in the care of asthma because concordance
with treatment is often poor.44
To improve concordance, doctors and patients need to
understand each other’s beliefs about asthma, its causes and treatment. They need to
agree a formulation of the illness that enables patients to maximize their function,
better understand treatments, and enact lifestyle and self-care measures while
reducing the burden of care.45
Narratives may be hampered by a range of factors, even when practitioners are open
to, familiar with or trained in the narrative approach. An obvious barrier is pressure of
time but more subtle hindrances include failing to pick up cues or adopting a doctor-
centered agenda by behaviors such as a rigid adherence to assumptions of causation,
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inappropriate psychologising of symptoms, dwelling on negative emotions, providing
overly detailed explanations, or giving thinly disguised advice. 44
Conclusion
This short review has considered the potential of narrative approaches in dealing with
patients with asthma in clinical practice. Patients might be very sensitive to, and
strongly affected by patient-doctor power dynamics, and doctors’ active listening to
patient stories may facilitate more democratic medical encounters. This allows
practitioners to communicate more effectively with patients and to tailor advice and
treatments more specifically to their individual needs. Much still remains to be
researched in relation to narrative approaches to promoting health-related
behaviours,32
including how this particular approach might work in combination
with other approaches (e.g. visual methodologies) or interventions. Narrative
communication may be one of the most basic forms of human interaction, it may also
be one of the most powerful ways to establish and develop trusting patient-
practitioner relationships, leading to enhanced asthma care, self-care and wellbeing.
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References
1. World Health Organisation (WHO). Chronic respiratory diseases: Asthma.
Cited 06.8.14. Available: http://www.who.int/respiratory/asthma/en/. 2014.
2. Royal College of Physicians. Why Asthma Still Kills. The National Review of
Asthma Deaths (NRAD). London: Royal College of Physicians. 2014.
3. Global Initiative for Asthma. Asthma management and prevention: A practical
guide for public health officials and health care professionals. Cited 11.10.13.
Available at www.ginasthma.org/guidelines-gina-report-global-strategy-for-
asthma.html. 2009.
4. Denford S, Campbell JL, Frost J, Greaves CJ Processes of change in an
asthma self-care intervention. Qualitative Health Research.
2013;23(10):1419-1429.
5. McArdle W, Katch F, Katch V. Exercise physiology: energy, nutrition, and
human performance. Philadelphia: Lippincott Williams & Williams. 2007.
6. National Heart, Lung and Blood Institute (NHLBI) (2007). The four
components of asthma management. Cited: 06.08.14. Available:
http://www.nhlbi.nih.gov/files/docs/guidelines/04_sec3_comp.pdf
7. National Institute for Health and Clinical Excellence (NICE) (2013). Asthma
QS25. Cited 25.9.13. Available at: http://guidance.nice.org.uk/QS25
8. Lewis B. Narrative psychiatry: How stories can shape clinical practice.
Baltimore: The John Hopkins University Press; 2011.
9. Sakalys JA. Restoring the patient's voice. The therapeutics of illness
narratives. J Holist Nurs. 2003:21(3):228–41.
10. Hatem D, Rider E. Sharing stories: narrative medicine in an evidence based
world. Patient Educ Couns. 2004:54(3):251–3.
USING A NARRATIVE APPROACH WITH ASTHMA PATIENTS
15 | P a g e
11. Verghese A. The physician as storyteller. Annals of Internal Medicine,
2001;135(11):1012-17.
12. Frank AM. The wounded storyteller: Body, illness, and ethics. Chicago:
University of Chicago Press; 1995.
13. Hunter KM. Doctor’s stories: The narrative structure of medical knowledge.
Princeton: Princeton University Press; 1991.
14. Charon R. Narrative medicine: Honoring the stories of illness. Oxford:
Oxford University Press; 2006.
15. Charmaz K. Struggling for a self: Identity levels of the chronically ill. In: Roth
J Conrad P, eds. Research in the sociology of health care: The experience and
management of chronic illness. Greenwich: JAI Press; 1987;283-321.
16. Charmaz K. Good days, bad days: The self in chronic illness and time. New
Brunswisk, NJ: Rutgers University Press; 1991.
17. Kleinman A. The illness narratives: Suffering, healing and the human
condition. New York: Basic Books; 1988.
18. McAdams D. The stories we live by: Personal myths and the making of the
self. New York: Morrow; 1993.
19. Sparkes AC, Smith B. Disrupted Selves & Narrative Reconstructions. In:
Sparkes AC Silvennoinen M eds. Talking bodies: Men’s narratives of the
body and sport. Jyvaskyla, Finland: SoPhi; 1999.
20. Sparkes AC, Smith B. Men, Sport, spinal cord injury and narrative time:
Qualitative Research. 2003;3(3):295-320.
21. Smith B, Sparkes AC. Men, sport, spinal cord injury, and narratives of hope.
Social Science and Medicine. 2005;61:1095-1105.
22. Brody H. Stories of sickness. Oxford: Oxford University Press; 2003.
USING A NARRATIVE APPROACH WITH ASTHMA PATIENTS
16 | P a g e
23. Charon R. What to do with stories: The sciences of narrative medicine.
Canadian Family Physician. 2007;53(8):1265-1267.
24. Charon R. What to do with stories: The sciences of narrative medicine.
Canadian Family Physician. 2007;53(8):1265-1267.
25. Jackson M. The art of medicine: asthma, illness, and identity. The Lancet.
2008;372:1030-1031.
26. Gregersen PK. The historical catalyst to cure asthma. In: Brown E, ed.
Asthma: social and psychological factors and psychosomatic syndromes.
Basel: Karger Publishers; 2003.
27. Jackson M. Asthma: A Biography. Oxford: Oxford University Press; 2005.
28. Jackson M. The art of medicine: Asthma, illness, and identity. The Lancet.
2008;373:1030-1031.
29. Netuveli G, Hurwitz B, Sheikh A. Lineages of language and the diagnosis of
asthma. Journal of the Royal Society of Medicine. 2007;100(1):19-24.
30. Sparkes AC. Telling tales in sport and physical activity. Champaign, IL:
Human Kinetics; 2002.
31. Sparkes AC. Reflections on the socially constructed physical self. In Fox KR,
ed. The physical self: from motivation to well-being. Champaign: Human
Kinetics; 1997:83-110.
32. Kvangarsnes M, Torheim H, Hole T, Ohlund LS. Narratives of breathlessness
in chronic obstructive pulmonary disease. Journal of Clinical Nursing.
2013;22:3062-3070.
33. Hinyard LJ, Kreuter MW. Using narrative communication as a tool for health
behaviour change: a conceptual, theoretical, and empirical overview. Health
Education & Behaviour. 2013;34:777-792.
USING A NARRATIVE APPROACH WITH ASTHMA PATIENTS
17 | P a g e
34. Owton H, Allen-Collinson A. Conformers, contesters, creators: vignettes of
asthma identities and sporting embodiment. International Review of Sociology
of Sport. Online early: doi:10.1177/1012690214548494.
35. Sharma V. Anxiety and stress can aggravate asthma symptoms. Mind
Publications, [online]. Cited 07.02.11. Available:
http://www.mindpub.com/art376.htm. 2001.
36. Owton H. Integrating multiple forms of representation: Fighting Asthma.
Qualitative Inquiry. 2013;19:601-604.
37. Lakoff G, Johnsen M. Metaphors we live by. Chicago: The University of
Chicago press. 2003.
38. Gabe J, Bury M, Ramsay R. Living with asthma: the experiences of young
people at home and at school. Social Science and Medicine, 2002;1619-1633.
39. Crossley M. Narrative psychology, trauma, and the study of self/identity.
Theory psychology. 2000;10(4):527-546.
40. Riessman C. Narrative analysis. In Narrative, Memory & Everyday Life.
University of Huddersfield: Huddersfield; 2005:1-7.
41. Heritage J, Maynard DW. Communication in medical care. Interaction
between primary care physicians and patients. Cambridge: Cambridge
University Press; 2006.
42. Siriwardena AN, Norfolk T. The enigma of patient centredness, the
therapeutic relationship and outcomes of the clinical encounter. Quality in
Primary Care. 2007;15:1-4.
43. Launer JMN. Narrative-based primary care a practical guide. Abingdon:
Radcliffe Medical Press; 2002.
44. Horne R. Compliance, adherence, and concordance: Implications for
USING A NARRATIVE APPROACH WITH ASTHMA PATIENTS
18 | P a g e
asthma treatment. Chest. 2006;130(1):65-72.
45. Gallacher K, May C, Montori V, Mair F. Understanding patients’ experiences
of treatment burden in chronic heart failure using normalization process
theory. Annals of Family Medicine. 2011;9(3):235-243.
USING A NARRATIVE APPROACH WITH ASTHMA PATIENTS
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Figure 1 Patient centered consulting: a four-stage model (adapted from
Siriwardena and Norfolk (2007)42