ILLNESS NARRATIVE 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 speakof 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 underthat 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 usefulespecially 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

ILLNESS NARRATIVE an entity, usually a person, is viewed asa 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 Nol 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, Carrolls (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 Carrolls 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)

ILLNESS NARRATIVE describe the foundational building blocks of narrative. They outline a series of characteristics working from low narrativity to high narrativitythat begin to assemble the working attributes of a useful or meaningful definition of narrative. Their initial characteristics are identical to Carrolls: 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 narrativityor the minimal attributes of narrativePaley 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 explaineither implicitly or explicitlythe 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 doesnt 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

ILLNESS NARRATIVE 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 plotcentral character, problem, and explanationelicit 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 dont so limit the definition. Finally, to make the illness narrative useful to nursing, I am most interested in true stories of ones life. True stories should be broadly interpreted, and should in no way discount

ILLNESS NARRATIVE the value of possibly fictional elements that are incorporated into a patients real-life story

(Polkinghorne, 1988). When I say true story, I mean to say stories that concern an individuals life, as opposed to completely fictional accounts that have no direct bearing on an individuals 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 plotcentral character, problem, and explanationelicit some reaction from the reader or listener, a reaction that might include an emotional

ILLNESS NARRATIVE 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 individuals 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 ones own interior addressee (p.48). Bakhtin writes about the concept of dialogisman 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). Discoursebetween speaker and listener, writer and readeris 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 territoryripe 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

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

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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-addicts narrative about living with Hepatitis C plays out in a societal metanarrative that says that the patients 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 narrativean individuals movement from health to sickness, and from sickness back to health; the chaos narrativestories of individuals sucked into the undertow of illness (Frank, 1989, p. 115) where a return to health is simply unimaginable; and the quest narrativewhere 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 NARRATIVE Illness narratives, especially in the patient-nurse relationship, are often informal

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narrations that concern the illness experience from the patients 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. Id given up hopes of doing a Ph.D. getting cancer precipitated the end of the relationship (to his fiance) pretty quickly I wasnt planning for the future in any waywhen I was very sick, I thought I was going to die, and I thought Id never go fishing, and never travelling. I couldnt walk a block at a certain time. So doors that have closed nowlove relationships, theyre 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. Its just so hard to make long-term plans, which is frustrating, because thats 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 fiance). The narrative links the central character to explanations that illuminate the patients 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 patients illness narrativeone 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 practitioners perspective rather than the patients voice. This case is from a medical students clinical case presentation:

ILLNESS NARRATIVE 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

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concept, but not all of them (Walker and Avant, 2005). As an example, I use a patients story that contains all of the necessary elements of narrative, but that does not either implicitly or explicitly address the patients 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 thinkthe 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 itand then maybe you could sneak me back a cookie. Although perhaps a metaphorical stretch, it might be argued that the patients story of his mothers 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 clearat least in the storys larger contextthan represented in this example. Related Concepts Some closely related concepts to illness narrative include the following:

ILLNESS NARRATIVE Patients account of illness Nurse/patient discourse Metaphor and allegory Illumination of Meaning

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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 patients expressioneither 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 narrativesor pathographies as they are sometimes calledis 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

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

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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 medicinethat 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 diseasewhere 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 patients 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 universeswhere 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).

ILLNESS NARRATIVE The consequences of illnesssuch as loss of independence, loss of self, loss of

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predictabilityare 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 ones own story takes on a renewed urgency. In the end, these illness narratives are more than just storiesthey are the vehicle through which a patient makes sense of not just an illness but an entire life.

ILLNESS NARRATIVE References Atkinson, R. (1995). Medical talk and medical men. London: Sage Publishing. Bakhtin, M. (1981). The dialogic imagination. Austin, TX: University of Texas Press. Bowers, R. and Moore, K. (1997). Bakhtin, nursing narratives, and dialogical consciousness. Advances in Nursing Science, 19(3), 70-77. Bury, M. (2001). Illness narratives: fact or fiction? Sociology of Health & Illness, 23(3), 263285. Carroll, N. (2001). On the narrative connection. In W. van Peer & S.B. Chatman (Eds.), New

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perspectives on narrative perspective. Albany, NY: State University of New York Press. Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5(2), 168-195. Charon, R. (2006). Narrative Medicine: Honoring the Stories of Illness. New York, NY: Oxford University Press. Frank, A.W. (1989). The wounded storyteller. Chicago, IL: The University of Chicago Press. Haddon, A. (2009). Listen to your patients stories. Nursing, 39(10), 42-44. Herzlich, C. and Pierret, J. (1987). Illness and self in society. Baltimore, MD: The Johns Hopkins University Press. Hobbs, J.R. (1990). Literature and cognition. Stanford: Center for the Study of Language and Information. Kerby, A.P. (1991). Narrative and the Self. Bloomington, IN: Indiana University Press. Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. New York, NY: Basic Books.

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Livingston, P. (2009). Narrativity and knowledge. Journal of Aesthetics and Art Criticism, 67(1), 25-36. Mathieson, C.M. and Stam, H.J. (1995). Renegotiating identity: cancer narratives. Sociology of Health & Illness, 17(3), 283-306. Meichenbaum, D. and Fitzpatrick, D. (1993). A constructivist narrative perspective on stress and coping: Stress inoculation applications. In L. Goldberger & S. Breznitz (Eds.), Handbook of stress: Theoretical and clinical aspects (2nd ed.) (pp. 706-723). New York, NY: MacMillan. Narrative. (2009, September). In Oxford English Dictionary Online (2nd ed.). Oxford: Oxford University Press. Retrieved from http://dictionary.oed.com.ezproxy.plu.edu/entrance.dtl Orsini, M. and Scala, F. (2006). Every virus tells a story: Toward a narrative-centered approach to health policy. Policy and Society, 25(2), 125-150. Overcash, J.A. (2003). Narrative research: A review of methodology and relevance to clinical practice. Critical Reviews in Oncology/Hematology, 48(2), 179-184. Paley, J. and Eva G. (2005). Narrative vigilance: The analysis of stories in health care. Nursing Philosophy, 6(1), 83-97. Parse, R.R. (1981). Man-living-health: A theory of nursing. Hoboken, NJ: John Wiley & Sons. Polkinghorne, D.E. (1988). Narrative Knowing and the Human Sciences. Albany, NY: State University of New York Press. Prince, G. (1996). Remarks on narrativity. In C. Wahlin (Ed.), Perspectives on narratology: Papers from the Stockholm symposium on narratology (pp. 95-106). Frankfurt: Peter Lang.

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Richardson, B. (1997). Unlikely stories: Causality and the nature of modern narrative. Newark, DE: University of Delaware Press. Ricoeur, P. (1991). Narrative identity. In D. Wood (Ed.), On Paul Ricoeur: Narrative and interpretation. New York, NY: Routledge. Rosenwald, G.C. and Ochberg, R.L. (1992). Storied lives: The cultural politics of selfunderstanding. New Haven, CT: Yale University Press. Sturgess, P.J.M. (1992). Narrativity: Theory and practice. Oxford: Clarendon Press. Toombs, S.K. (1988). Illness and the paradigm of lived body. Theoretical Medicine, 9(2), 201206. Walker, L. O. and Avant, K. C. (2005). Strategies for Theory Construction in Nursing. Upper Saddle River, NJ: Pearson Education, Inc.