Illness Narrative

ILLNESS NARRATIVE 2

Illness Narrative and Nursing: A Concept Analysis

“We equate life with the stories that we tell about it. The act of telling would

seem to be the key to the sort of connection to which we allude when we

speak…of the coherence of life” (Ricoeur, 1991, p. 195).

Background

Diagnosis of a life-threatening illness or the onset of a disability is often a life-changing

event. The transition from well to ill, able-bodied to disabled, represents a challenge to the

internal narrative many of us operate under—that we are invulnerable, that our lives are

predictable, that life has meaning, and that we are worthwhile. The onset, sudden or otherwise, of

an illness or a disability calls all of our beliefs into question.

Meichenbaum and Fitzpatrick (1993) postulate that “how individuals and groups engage

in narrative construction is critical to their adjustment to stressful events” (p. 712). One of our

most powerful forms for expressing suffering and experiences related to suffering is the

narrative. Patients‟ narratives give voice to suffering in a way that lies outside the domain of the

biomedical voice (Charon, 2006). This is one of the main reasons for the emerging interest in

narratives among social science, psychology, medicine, and nursing. The value of patients‟

narratives in the clinical relationship and also in health-related qualitative research has been well

established over the past 20 years, and has drawn, to some degree, on literary criticism, with its

vast literature on narrative and narratology.

Reviewing the health care literature and the common use of patient stories in qualitative

research, there remains ambiguity in the term “narrative.” In some literature, it has a relatively

narrow definition, referring to past or current events told in roughly chronological order. At other

times, however, narrative might include virtually anything a patient might say. The former is

“narrative” as a literary critic or historian might understand it; the latter is a vague idea that

might be better categorized as “non-medical utterance” (Paley and Eva, 2005, p. 84). Clarifying

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what narrative is, and what it surely is not, would be useful—especially to nursing and the use of

narrative in qualitative research. It is not difficult to find examples in which authors use different

meanings of the concept, even within the same paper (Haddon, 2009; Overcash, 2003).

The purpose of this concept analysis, then, is to clarify the defining attributes of the

concept “illness narrative,” especially as it relates in its usefulness to nurses in the clinical

relationship. Additionally, consequences and benefits of listening to patients‟ stories of illness

will briefly be explored. For this concept analysis, I utilize a structure and framework as

suggested by Walker and Avant (2005).

Definition

The Oxford English Dictionary Online (2009, September) gives the following definition

of “narrative” as a noun:

1. An account of a series of events, facts, etc., given in order and with the

establishing of connections between them; a narration, a story, an account.

2. Literary Criticism. The part of a text, esp. a work of fiction, which represents

the sequence of events, as distinguished from that dealing with dialogue,

description, etc.; narration as a literary method or genre.

3. Biography, process, etc., in which a sequence of events has been constructed

into a story in accordance with a particular ideology; esp. in grand narrative

n. a story or representation used to give an explanatory or justificatory account

of a society, period, etc.

4. As a mass noun: the practice or art of narration or story-telling; material for

narration.

Prince (1996) defines narrative very minimally as “the representation of at least one

event, one change in a state of affairs” (p. 95), and Richardson (1997) defines it as “the

representation of a causally related series of events” (p. 106). A more complex and complete

definition of narrative is offered by Hobbs (1990): “Narrative is a species of discourse in which

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an entity, usually a person, is viewed as…a planning mechanism, attempting to achieve some

goal, generally in the face of some obstacle, and working out and working through the steps of a

changing plan to achieve the goal. Since plans are constructed out of our beliefs of what causes

and enables them, narrative presents a purported causal structure of a complex of events” (p. 39).

Defining Attributes

Noël Carroll (2001) outlines a theory of narrative that I will use for working purposes. In

his description, he outlines not a clear set of necessary and sufficient conditions, but a notion of

related elements which he refers to as the “narrative connection” (p. 21). This connection is like

a set of family resemblances that can connect together a number of the important features of

what narratives are generally understood to be. To begin with, Carroll argues that narrative

discourse is comprised of more than one event and/or states of affairs that are connected, are

about a unified subject, and are represented as being ordered in time. A narrative is not merely a

list of events, but there must be some sort of sequence of events, where the sequence minimally

implies a temporal ordering.

A chronicle is a closely related cousin to “narrative.” A chronicle includes more than one

event and/or state of affairs, has a temporal order and a unified subject (i.e. a topic or character).

Carroll (2001) defines a chronicle as a “discursive representation that (temporally, but

noncausally) connects at least two events in the career of a unified subject such that a reliable

temporal ordering is retrievable from it” (p. 25). For example, a chronicle might read: “The

patient was diagnosed with cancer last year. His daughter moved to Portland this year.” This has

a unified subject and an obvious temporal order, but it is not a full-fledged narrative because it

does not display a connection between events other than a temporal ordering of the events that it

recounts.

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In addition, then, to a multiple sequence of events, a unified subject, and a perspicuously

temporal order, what is it that makes a collection a narrative? Some sort of causation is most

often suggested as the necessary element that consistently links the changes in states of affairs

together in a way that would make narratives identifiable as narratives (Charon, 2005; Hobbs,

1990; Livingston, 2009; Polkinghorne, 1988; Richardson, 1997). If it can be argued that

narrative involves some kind of change in the life of the subject, then that change needs to be

more than just coincidental; it needs to be identifiable as a causal, or at least semi-causal,

process. The earlier events in a narrative must be at least minimally necessary so that later events

can follow. The earlier event must, at minimum, be causally relevant to the later event, although

it need not be directly causal.

Thus, Carroll‟s (2001) minimum attributes for discourse to be called narrative are:

1. The discourse represents at least two events and/or states of affairs

2. It concerns the career of at least one unified subject

3. The temporal relationships between the events and/or states of affairs are ordered

4. The earlier events in the sequence are at least causally necessary conditions for

the causation of later events and/or states of affairs

It is perhaps additionally illuminating to borrow a concept from literary criticism and talk

about “narrativity.” Narrativity, as defined by Sturgess (1992), is something that a text or

discourse has degrees of. Similar to Carroll‟s idea of a “collection” of attributes, Sturgess (1992)

describes a specific series of elements; the presence of these elements is associated with “high”

narrativity and, conversely, the absence of these elements is associated with “low” narrativity.

High narrativity would most closely resemble a full-fledged “story” whereas low narrativity

might be more closely related to a chronicle, as previously described. Paley and Eva (2005)

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describe the foundational building blocks of narrative. They outline a series of characteristics—

working from low narrativity to high narrativity—that begin to assemble the working attributes

of a useful or meaningful definition of narrative. Their initial characteristics are identical to

Carroll‟s: the text or discourse must recount at least two events; the events imply a temporal

ordering; and at least some of the events must be causally related (Paley and Eva, 2005).

From this starting point of low narrativity—or the minimal attributes of narrative—Paley

and Eva add on characteristics that begin to describe high narrativity or story. From Carroll

(2001) they borrow the idea that the causal relationships between events in a narrative make

explanation possible. By selecting specific events, and focusing on the causal relationship

between them, a narrator or storyteller seeks to explain—either implicitly or explicitly—the

phenomenon being described. In the statement “my aunt never exercised a day in her life and

then she died of a heart attack,” there is an implicit explanation that the heart attack was at least

partially caused by the lack of exercise. The sentence doesn‟t rise to the level of high narrativity,

but it includes all of the elements discussed thus far: two events that concern a unified subject;

the events are temporally and causally related; and an explanation of something can be gleaned

from the causal relationship.

Moving higher up the narrativity ladder, four more characteristics are introduced that

describe “plot.” These elements are necessary, I believe, in the construction of the concept of

“illness narrative.” They begin to turn a simple story into a narrative that is useful and

meaningful, especially in intersubjective discourse (Polkinghorne, 1988). The building blocks of

“plot,” as described by Paley and Eva (2005), are:

1. The presence of a central character (self or other) who is involved in the events

described

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2. This character is confronted with something (e.g., a problem, a dilemma, a

situation) and addresses it (and perhaps resolves it) within the narrative

3. There is an implicit or explicit link between the central character and the

explanation that illuminates the situation confronting the character or reveals how

the character resolved the situation

4. These elements of plot—central character, problem, and explanation—elicit some

reaction (emotional or otherwise) from the reader or listener

As an example, consider the following story: “I was feeling very weak but I wanted to get

out of bed. Once I stood up, I was so dizzy that I fell on the floor.” The character is confronted

with a problem (how to get out of bed), there is an explanation or resolution to the problem

(weakness and dizziness lead to the fall), and a reaction is aroused in the reader (e.g., fear,

concern, sympathy, understanding).

If these are the basic elements of “narrative,” how then is “illness narrative” defined? I

propose that these basic building blocks of narrative are essential, with the addition of two more

defining characteristics. First, the general situation or “problem” confronted by the character in

the narrative would have some implicit or explicit relationship to illness or disability. This could

be a direct relationship to illness (a person confronting a diagnosis of cancer) or could be an

implied or indirect relationship to illness (a schizophrenic patient tells about the voices in his/her

head). In common and popular usage, illness narratives mostly concern chronic illness and

disability (i.e., life changing events rather than acute episodic events), although for the purposes

of this paper I don‟t so limit the definition.

Finally, to make the illness narrative useful to nursing, I am most interested in “true”

stories of one‟s life. “True” stories should be broadly interpreted, and should in no way discount

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the value of possibly fictional elements that are incorporated into a patient‟s real-life story

(Polkinghorne, 1988). When I say “true story,” I mean to say stories that concern an individual‟s

life, as opposed to completely fictional accounts that have no direct bearing on an individual‟s

lived experiences.

To summarize, then, these are the defining attributes of the concept “illness narrative”:

1. The narrative contains at least two events

2. The narrative concerns at least one central character (self or other) who is

especially involved in the events described

3. The events and/or the central character are at least minimally rooted in real life (as

opposed to pure fiction or fantasy)

4. The temporal relationships between the events and/or states of affairs are evident

(but not necessarily chronologic)

5. The earlier events in the sequence are at least minimally necessary conditions for

the causation of later events

6. The central character is confronted with illness, or a situation or problem in some

way related to illness, and addresses the illness or problem implicitly or explicitly

within the narrative

7. There is an implicit or explicit link between the central character and the

explanation that illuminates the situation confronting the character or reveals how

the character resolved or made sense of the situation

8. These elements of plot—central character, problem, and explanation—elicit some

reaction from the reader or listener, a reaction that might include an emotional

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response (e.g., compassion, anger, admiration) but that also includes the

discernment or elucidation of meaning

These minimal attributes of the concept help to determine when text or speech should be

considered “illness narrative.” Some further attributes help to clarify the usefulness of illness

narratives, especially as utilized in the patient/nurse relationship.

Narrative always involves the “interplay of consciousness” (Bowers and Moore, 1997,

p.3). By this, I mean that all stories are told or written from an individual‟s perspective, and all

stories are directed toward another (i.e. the reader or listener), even when that “other” is oneself.

As Bakhtin (1981) explains, language involves “somebody talking to somebody else, even when

that someone else is one‟s own interior addressee” (p.48). Bakhtin writes about the concept of

dialogism—an epistemological mode characterized by constant interaction between and among

meanings, all of which have the potential to influence and condition each other (Bowers and

Moore, 1997). Discourse—between speaker and listener, writer and reader—is an “interplay of

consciousness” because stories are directive and selective. Nothing in human discourse occurs in

isolation. This concept is similar to the paradoxical concept of “revealing/concealing” as

described by Parse (1981). A narrator or author is selective in what they reveal or conceal,

dependent upon who the intended audience of the story might be. To use an example from

nursing, a patient may tell a story that elucidates their struggles with COPD, while concealing

the fact that their refusal to quit smoking continues to exacerbate their situation. Narratives are

complex and meaningful when viewed in this context. The intersubjective interplay between

author and audience is rich territory—ripe with meaning, purpose, intention, and dialogue.

Viewed in the intersubjective world in which stories are told, narrative must also be

considered in the competing context of larger narratives and metanarratives. Stories are directed

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at others, and others make sense of these stories as viewed within their own subjective

consciousness. For example, a patient newly diagnosed with cancer narrates a hopeful story that

the cancer will be treated successfully. The nurse receiving the story, however, lost her own

mother to cancer after a prolonged illness. While the patient tries to understand the cancer

diagnosis in a hopeful context, the nurse views the story much more pessimistically. Illness

narratives must also be considered in a larger societal context where “metanarratives” of illness

play out in the media and popular culture. Rosenwald and Ochberg (1992) argue that “all

narratives are told within the paradigms deemed intelligible by their specific culture” (p. 7). For

example, an ex-addict‟s narrative about living with Hepatitis C plays out in a societal

metanarrative that says that the patient‟s risky behaviors brought this illness on himself (Orsini

and Scala, 2006). Narratives of stigma are often stories best understood in the context of larger

metanarratives.

Although outside the scope of this paper, it is noteworthy to mention that illness

narratives have been examined in light of overall style, themes, and metaphors. Frank (1989), for

example, classifies three distinct types of illness narratives: the restitution narrative—an

individual‟s movement from health to sickness, and from sickness back to health; the chaos

narrative—stories of individuals “sucked into the undertow of illness” (Frank, 1989, p. 115)

where a return to health is simply unimaginable; and the quest narrative—where the experience

of illness becomes a catalyst for self-change and transcendence. Other authors classify illness

narratives into additional styles, themes and sub-genres (Bury, 2001; Charon, 2006; Kleinman,

1988).

Model Case


Illness narratives, especially in the patient-nurse relationship, are often informal

narrations that concern the illness experience from the patient‟s point of view. This model case,

from a patient living with lymphoma, includes all of the defining attributes of an illness

narrative, as detailed above.

Eventually I found out it was nodular lymphoma…. I’d given up hopes of doing a

Ph.D. …getting cancer precipitated the end of the relationship (to his fiancée)

pretty quickly… I wasn’t planning for the future in any way…when I was very

sick, I thought I was going to die, and I thought I’d never go fishing, and never

travelling…. I couldn’t walk a block at a certain time…. So doors that have closed

now—love relationships, they’re far and few and in between, and a career—

anything I can really sink my teeth into…. I feel like an old person. I feel retired.

It’s just so hard to make long-term plans, which is frustrating, because that’s

what gives people meaning in their lives, in part, along with human relationships

and what-not. (Mathieson and Stam, 1995, p. 300)

The narrative discusses multiple events focused around a central character (himself) who

is confronted with an illness (lymphoma). The events come from real life and the events are

perspicuous in time even though they are not chronological. Earlier events in the narrative

(diagnosis of lymphoma) are necessary to set up causal relationships with later events (e.g., end

of relationship with fiancée). The narrative links the central character to explanations that

illuminate the patient‟s thoughts, choices, and meanings, and an emotional response is elicited

from the audience (e.g., compassion, sympathy, frustration).

Contrary Case

As a contrary case, I use an example rooted in biomedical language. While this case has

narrative elements (albeit in the “low narrativity” range), it exemplifies an opposing viewpoint to

a patient‟s illness narrative—one rooted in the language of science rather than the language of

lived human experience, one rooted in the centrality of rationality rather than the mystery of

meaning, and one rooted in the practitioner‟s perspective rather than the patient‟s voice. This

case is from a medical student‟s clinical case presentation:


Mrs. Thayer is a 58 year-old white female with a history of rheumatic valvular

disease including mitral stenosis, aortic insufficiency, and chronic afib. Her

disease has been progressive over the last two years with two recent admissions

for biventricular failure. In August, her creatinine was one point six, which was

elevated from zero point eight a year ago. That was then increased to three point

five on the ninth of September accompanied by three plus protein with white

blood cells and red blood cells in the urine. She was admitted on the fifth of

October for a workup of acute renal failure. (Atkinson, 1995, p. 98-99)

Borderline Case

A borderline case is an example that contains most of the defining attributes of the

concept, but not all of them (Walker and Avant, 2005). As an example, I use a patient‟s story that

contains all of the necessary elements of narrative, but that does not either implicitly or explicitly

address the patient‟s illness as a topic. Obviously, not every utterance from a patient is an illness

narrative. However, it should also be noted that patient narratives may implicitly concern

themselves with illness. Even though the topic of the narrative is not easily identifiable as being

about illness, the patient may (consciously or unconsciously) be speaking metaphorically or

allegorically about the illness experience. The following excerpt is an example of a patient

narrative which does not explicitly concern itself with the illness experience:

The food in the hospital cafeteria is pretty decent, I think…the soup today is

chicken noodle and I thought it was really good. My mom used to make really

good chicken noodle soup when I was just a kid, and the soup in the cafeteria

reminded me of that. You should try to make it down there before they run out of

it…and then maybe you could sneak me back a cookie.

Although perhaps a metaphorical stretch, it might be argued that the patient‟s story of his

mother‟s chicken soup represents an unconscious longing to be taken care of, but in the interests

of consistency and clarity, I would argue that an illness narrative must be more implicitly or

explicitly clear—at least in the story‟s larger context—than represented in this example.

Related Concepts

Some closely related concepts to “illness narrative” include the following:


Patient‟s account of illness

Nurse/patient discourse

Metaphor and allegory

Illumination of Meaning

Antecedents

Antecedents are those events or incidents that must occur prior to the occurrence of the

concept (Walker and Avant, 2005). For the concept of illness narrative, I suggest the following

antecedents:

1. An individual is confronted with an illness or disability, and some aspect of the

experience is meaningful enough to express (to oneself or others)

2. The individual reflects upon the experience of illness or disability, and then verbalizes or

writes some aspect of that experience

3. In the context of this paper, a nurse must be the receptive audience of the patient‟s

expression—either as a listener or a reader

4. The nurse must understand the illness narrative in a way in which some reaction is

elicited or some meaning is illuminated

The concept of illness narrative, and its visibility in human sciences literature, is a fairly

recent phenomenon. Although people have been writing about experiences with sickness for

centuries, the popularity of survivor narratives—or “pathographies” as they are sometimes

called—is a phenomenon of the past 20 years. Herzlich and Pierret (1987) describe the

antecedents that allowed the “sick person” to emerge in contemporary society. First, disease had

to cease being a mass phenomenon. In other words, with the progress of modern medicine,

illness is now more of an individual phenomenon than a mass phenomenon. Second, illness had


to no longer be followed by death; people now live entire lives with chronic diseases and

disabilities that 100 years ago would not have been survivable. And third, voices of suffering had

to be diminished within the more dominant metanarrative of modern medicine—that sickness

can be healed, that disease is preventable, and that suffering has no redeeming value. The current

prevalence and popularity of the illness narrative is perhaps most easily grasped by visiting

online chat rooms and bulletin boards devoted to a specific disease—where individuals share

their stories and struggles, seek support and advice, and bear witness to the suffering of others.

Consequences

Listening to stories of illness, especially as told from the perspective of the individual

experiencing that illness, can have profound implications for nursing practice. Too often in

modern medicine, the patient‟s perception of illness is either ignored or lost within the dominant

biomedical paradigm of depersonalized bodies and body systems. Charon (2005) describes this

chasm by making an analogy to the phenomenon of parallel play observed in infants. Before they

develop the intersubjective capacity to empathize and relate to one another, young children play

happily alongside one another without true interaction. It is only when infants mature and

develop interpersonal awareness that they are able to enjoy collaborative play, i.e., playing

“with” as opposed to simply playing “next to.” In a similar manner, patients and care providers

sometimes seem to exist in parallel universes—where both parties are left in isolation from one

another. As Charon (2005) writes: “Only with the capacity to be open to genuine

intersubjectivity can these two participants (doctor and patient) approach an authentic

relationship in which the suffering does not separate them, but is shared. Once shared, the

suffering is lessened” (p. 32).


The consequences of illness—such as loss of independence, loss of self, loss of

predictability—are not purely objective phenomena (Charmaz, 1983). They are phenomena that

take on subjective meaning for each individual. Toombs (1988) writes that “the illness is

experienced by the patient not so much as a specific breakdown in the mechanical functioning of

the biological body, but more fundamentally as a disintegration of his „world‟” (p. 201). The

narrative of illness is an attempt to make sense of illness. The illness narrative provides a

medium through which the patient can articulate and transform the symptoms and disruptions of

illness into meaningful events. Through narrative expression, a patient begins to reconstruct a

sense of self and personal identity (Kerby, 1991)—understanding the illness within a larger

context of time and within the framework of a personal biography.

Nurses and other health care providers are privy to profound and life-changing moments

in their patients‟ lives. For patients threatened by a serious illness, their stories have special

meaning. In negotiating regimens of treatment, changing bodies, and disrupted lives, the telling

of one‟s own story takes on a renewed urgency. In the end, these illness narratives are more than

just “stories”—they are the vehicle through which a patient makes sense of not just an illness but

an entire life.


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