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Authors’ own pre-publication copy Full citation: 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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Page 1: Title: Using a narrative approach to enhance clinical care ...€¦ · practice guidelines for the diagnosis and management of asthma which tends to take a biomedical focus: (i) measures

Authors’ own pre-publication copy

Full citation:

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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Figure 1 Patient centered consulting: a four-stage model (adapted from

Siriwardena and Norfolk (2007)42