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The Routledge Handbook of Health Communication
Teresa L. Thompson, Roxanne Parrott, Jon F. Nussbaum
Narrative Turns Epic
Publication detailshttps://www.routledgehandbooks.com/doi/10.4324/9780203846063.ch3
Barbara F. Sharf, Lynn M. Harter, Jill Yamasaki, Paul HaidetPublished online on: 27 Apr 2011
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3NARRATIVE TURNS EPIC
Continuing Developments in Health Narrative Scholarship
Barbara F. Sharf, Lynn M. Harter, Jill Yamasaki, and Paul Haidet
Cancer is an uninvited life guest, disrupting daily routines, straining relationships, and shifting one’s
sense of self. Instead of forming bone on her growth plates, sixteen-year-old Caitlin Shoup grew a two
by two inch tumor on the end of her left distal femur, biopsied and diagnosed as osteosarcoma in June,
2004. Within ten days, she began a triple drug chemotherapy regimen. While her classmates chose
between co-curricular activities, Caitlin weighed the comparative benefi ts and risks of limb salvage sur-
gery versus amputation. She completed most of her junior year in the oncology ward at Akron Children’s
Hospital, and though she returned to Perry High to complete her senior year, starkly visible markers of
her cancer remained. She continues to bear the twelve-inch scar between her thigh and calf with dignity.
“I wear my scar with pride and am honest about it most times, unless people approach me rudely, in
which case the scar is from a shark attack!” In addition to hair loss and permanent hearing damage,
though, Caitlin lost patience for the melodramas of teenage life. “I have a low tolerance for B.S. and
immaturity,” Caitlin shared. “… It’s amazing how few people actually appreciate their life and don’t
want to waste it.”
With a femur replaced with titanium and a new plastic knee, the range of motion in Caitlin’s knee
remains limited, she walks slower than most people her age and with a visible limp. Her left leg is
disfi gured from numerous surgeries and, due to nerve damage in her foot, multiple surgeries, and staph
infections, she has on occasion relied on leg braces, crutches, wheelchairs, and immobilizers to ward off
infections, reduce the impact of “foot drop,” and increase mobility. A blue tag hanging from Caitlin’s
rearview mirror marks her as disabled, a welcome moniker that limits the distance she must walk to her
apartment, class, and restaurants. Even so, she resists the marginal position that too often accompanies
living with a disability. “Although I am legally handicapped, I don’t consider myself that. I just say I
am diff erent-abled. I’m proud of everything I had to overcome and it makes me who I am today.”
Narrative Roots in Health CommunicationThe late Don Hewitt, legendary television news producer for CBS, said that his format for
his famous show 60 Minutes was simple; namely four words that every child knows—”Tell
me a story!” This anecdote is a layman’s version of rhetorician Walter Fisher’s (1987) claim
that humans are inherent storytellers (and hearers). In other words, each of us, to varying
degrees, makes use of our narrative tendencies in a wide array of communicative activi-
ties, including how we talk about health, illness, and medicine. Thus we begin with a brief
overview of the basic elements and purposes of narratives in health-related contexts. This
36
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37
is knowledge that is foundational to health communication scholarship conducted as nar-
rative inquiry.
The story of Caitlin and her family, which we have introduced and will continue to
relate throughout this essay, clearly illustrates all the classic features that constitute the
communicative form widely recognized as a health narrative. It is in large part an illness
narrative insofar as it was prompted by the life-threatening, life-altering personal rupture
(Bruner, 1990) that is cancer. As this tale unfolds, it becomes a story of healing and hope-
fulness. In some ways it is a quest for the deeper meanings of this illness experience (Frank,
1995), as well as an enactment of resilience, courage, coping, family love, and community
solidarity. The main protagonist and narrator, naturally, is Caitlin, but several other char-
acters—her mom, dad, younger sister, and a hometown journalist—co-construct, narrate,
and enrich this account. Each voices motives, fears, desires, and choices that work to emplot
the series of events in which they fi nd themselves; that is, to form connections among
actions and ideas, to attribute agency to self and others, and to come to grips with changing
circumstances and storylines (Mattingly, 1998). As with all narratives, the plotline extends
Figure 3.1 Battle ribbons: Caitlin’s hospital wristbands.
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Barbara F. Sharf, Lynn M. Harter, Jill Yamasaki, and Paul Haidet
38
through time (Ricoeur, 1984–1988). There is a seemingly faraway past depicting a happy
family prior to cancer; a series of frightening, near past episodes in which pain, diagnosis,
treatments, and treatment repair predominate; an energetic, thankful, and optimistic pres-
ent, tempered by ongoing challenges, lessons learned, and an altered way of living; and,
thankfully, a foreseeable future, open with possibilities. The story that is eventually layered
and pieced together occurs through changing scenes of home, hospital, and the public
sphere. What begins as intensely personal interactions among members of Caitlin’s family
evolves to include friends, health practitioners, and eventually a dialogue with a larger audi-
ence of well-wishers and interested others. We should also assume that there are deliberate
silences, parts of the lived story that individual narrators have chosen not to disclose (Poirier
& Ayres, 1997). As unique as the content of this particular health narrative, so is its tell-
ing through the several texts through which it unfolds, in many voices, through multiple
perspectives. It is visual and verbal; oral and written; conversational, journalistic, poetic,
and deliberative.
In addition to the grammar or constituent parts, foundational narrative scholarship has
spoken to the functions or applications of health narratives. Health narratives may occur
as individual stories (or as in our example, a pastiche of individual stories constituting a
family narrative), but there are also socially constructed stories or master narratives that
arise from and exist within the larger culture; for example, exemplary depictions of what
it means to live with cancer. Previous research (Sharf & Vanderford, 2003) has identifi ed
several major functions of health narratives. Stories are a way of making sense of an uncer-
tain or chaotic set of circumstances (Bruner, 1990), which are frequently set in motion by
a serious diagnosis, among other life events (Frank, 1995). The stories we create or ascribe
to are both a by-product of our cultural life (Morris, 1998) and a further construction of
social reality; for example, stories such as Caitlin’s enable people to understand cancer
as a survivable, chronic disease rather than a death sentence. Narratives provide implicit
explanations (Kleinman, 1988) that reveal ideas of causation, remedy, and future possibili-
ties, infer warrants for decisions made, and enable a sense of control in the face of threat
and disorder (Beck, 2001; Sharf, 2005). Life-altering illness or disability necessarily brings
about changes in personal identity in terms of how individuals view themselves and how
they are perceived by others (Frank, 1995). Narratives can help to create identifi cation
(Burke, 1950) among people experiencing similar health problems, thus building a sense
of community in place of social isolation. Finally, narratives may result in benefi cial health
outcomes (Pennebaker, 2000).
Moving on from these fundamental understandings of what health narratives are and
what purposes they serve, we now transition to the current landscape of health communi-
cation scholarship. We emphasize how the robustness of narrative theory rests in part in its
focus on webs of interwoven social (and material) forces. No story is solely personal, orga-
nizational, or public; personal stories cannot escape the constraints of institutional interests,
nor are they separate from cultural values, beliefs, and expectations. Meanwhile, institu-
tional structures and scripts intertwine to form the social milieu in which performances
unfold. In their seminal compilation of narrative analyses from various vantage points of
health-related concerns, Harter, Japp, and Beck (2005) encapsulate the scholarly challenges
of negotiating tensions between knowing and being, continuity and disruption, creativity
and constraint, and the partial and the indeterminate. In what follows we account for newer
directions in inquiry, and ways in which this work is enriching contemporary understand-
ings of health, medicine, and illness.
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Enlarging the Landscape of Health Narratives
Humanizing Health CareAfter a routine CT scan revealed a suspicious mass on her left lung, Caitlin’s oncologist feared a worst
case scenario—osteosarcoma had metastasized to her chest wall. Even after a basic explanation from
the surgeon, the process and techniques of a transthoracic needle aspiration biopsy remained opaque to
common sense. “I wanted to know what was going on in my own body. [The doctor] was telling me,
but I couldn’t see it, I couldn’t visualize it,” stressed Caitlin. “Oftentimes they take photos for medical
reasons, so I just asked him to take my camera in to my surgeries. And he did. He always had one of
his medical students, that was their job for the day, to take pictures.” The transformation of Caitlin’s
body was rendered seeable as well as sayable as her surgical team snapped photos, dramatizing the biopsy
process, and preserving a fragment of narrative experience that might otherwise be lost. “I learned a lot
about my body. Like this picture here [a photo of her chest cavity open], I thought it was cool at fi rst,
because I didn’t know what a lung looked like. I thought it looked like a tongue. But, the opening is
so huge. I couldn’t believe they could do that. Unbelievable.” Images can activate patterned integrations
of our remembered past, perceived present, and envisioned future, and in so doing function as anchors
to transitory moments and living memories (Reismann, 2008). Three years later, the photo elicits con-
fl icting emotions for Caitlin, a mnemonic device beckoning her to remember and refl ect on a punctuated
moment. “I feel angry when I look at that picture, because I told [the doctors] it had not metastasized.
I knew my body, and they didn’t listen. But I also feel relief, the relief that came from the pathology
report, from knowing with confi dence that it had not spread.”
Figure 3.2 Caitlin’s chest cavity during surgery.
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Barbara F. Sharf, Lynn M. Harter, Jill Yamasaki, and Paul Haidet
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The provision of health care would be impossible if not for our human capacity to organize
and embody lived experience in narrative form (Hunter, 1991). Diagnosis and treatment
are narratively infl ected enterprises consumed with emplotment processes (Charon, 2006).
A central diffi culty arises, though, when the singularities of a patient’s case are juxtaposed
with the generalities of a science-using practice. Caitlin’s providers followed warning signs
to detect potential problems, search for patterns of causality, and chart courses of action.
They were trained and legitimated to do so by the language and practices of technology,
complex and esoteric terminology and techniques. The Shoup family had not heard of a
solitary pulmonary nodule (SPN). Caitlin’s doctors were faced with a narrative challenge:
to help the family comprehend and contemplate “the shadow” on the CT scan of Cait-
lin’s lungs, and the potential consequences of a malignant mass. Extraordinary health care
providers are endowed with the gift of plot—those who understand how clinical practice
relies on narrative activity to not only facilitate treatment but also build relationships with
patients and probe what it means to be sick and well.
Narrative sense-making is not new in medical practice. Even so, the fact that informa-
tion from patients often arrives in narrative form usually goes unrecognized. Until recently,
the explicit acknowledgment of narrative activity in clinical work was whispered on the
fringes of mainstream medicine. The growing interest in narrative activity in health con-
texts is evident in scholarship on the narrative nature of clinical judgment and health care
(e.g., Ellingson, 2005; Hunter, 1991; Montgomery, 2006), and the emergence of the narra-
tive medicine movement (e.g., Charon, 2006, 2009; Greenhalgh & Hurwitz, 1998). Loosely
coupled, these research and praxis trajectories emphasize the role of narrative practices in
humanizing health care.
Cultural Stories: Moving between Public and PrivateOf course, you have to be careful. You hear a lot of stories on ACOR [online cancer list-serv]. We have
buried a lot of kids. Sometimes you have to fi lter what you read, ’cause it can create a lot of “what ifs”
and it can take a toll on you. But, we’ve made life-long friends through ACOR.—Tricia, Caitlin’s
mom
Narratives rarely, if ever, have a solitary existence. They operate concurrently in relation to
other stories, and may reinforce, indirectly compete with, or actively confront or resist one
another (Lindemann-Nelson, 2001) in ways that shape our understandings of disease, ill-
ness, healthiness, care, healing, survival, and mortality, among other issues. This is the case
even with master narratives, stories that underlie, refl ect, and perpetuate predominant cul-
tural values and assumptions about how the world is constituted and how society functions.
For example, at present the master narrative that the U.S. health care system is the best in
the world, albeit that it has grown too expensive, is being challenged by other versions of
what is at stake and how reform should occur: stories that illustrate a health care system
whose outcomes lag far behind those of other national systems that are less costly and tech-
nologically dependent, is inaccessible to large groups of working people, and unfair in terms
of who benefi ts and who is omitted. The saliency, vividness, clarity, and resonance of these
competing, sometimes colliding, narrative accounts now circulating in the public sphere is
likely to determine how U.S. health care will be reshaped for generations to come. Making
sense out of the multiplicity of overlapping but frequently contradictory stories told about
specifi c health concerns is a challenging aspect of health literacy. Some issues that come into
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play in considering how health narratives are communicated, shared, and understood in the
public sphere include intertextuality, narrative transformations, and instrumental, as well as
expressive, functions. We’ll discuss each of these factors in turn.
Intertextuality. This term refers to the processes through which discrete narrative
meanings infl uence one another (Harter et al., 2005), and even give rise to newly derived
signifi cance not intended or implied in preexisting stories. Perhaps the most important
interface is between private and public versions of illness narratives. Upon diagnosis of a
life-changing or life-threatening condition, one struggles to revise one’s autobiography
to make sense of an altered identity and why this has happened, and to accommodate
ensuing changes in body, lifestyle, and social relations, amongst others. In Caitlin’s case,
her revision is, by necessity, sudden, radical, and unavoidable: “I was worried about school
because I was on the fast track to being valedictorian.… Life just seemed to change in
an instant.” The diffi culty of this transition was in part lessened by exchanging stories
with Michelle, another girl undergoing similar experiences: “Cancer brought me a new
best friend. She understood in ways that my other friends from school couldn’t.” Caitlin’s
mother Tricia found a similar enhanced meaning through participation on a cancer web site
in which stories are shared.
However, Tricia also points out a more problematic side of intertextuality in this venue, in
which hopeful, positive meanings are superseded by tragic ones. Another intertextual diffi -
culty is what happens when there is a breach or outright contradiction between one’s personal
narrative and a more public version. Caitlin’s father, Doug, commented on the pros and cons
of making their personal story public: “It was nice that people thought to donate to us. But a
lot of the time, I didn’t feel like I needed it, there were probably people who needed it worse.
I donated a lot to churches, soup kitchens, ’cause we didn’t have a need for it.” Japp and Japp
(2005), examining experiences with Chronic Fatigue Syndrome, describe the additional suf-
fering brought about when one’s private illness narrative is at odds with the dominant public
version; in this case the biomedical master narrative of what constitutes a legitimate disease,
necessitates the evolution of the “legitimacy narrative’’ in which an individual’s account of
illness must attempt to establish moral, medical, and public legitimization for the suff ering
s/he experiences (p. 109). A more optimistic trajectory may occur when going public with
one’s private account is voluntary and provides positive functions for both the storyteller and
her audience. Beck (2005) emphasizes how readers or listeners became collaborators in the
co-construction of an illness story, thus broadening a support community.
Narrative Transformations. When Caitlin’s experiences with cancer were communicated
to the people of Massilon, Ohio through a series of articles in the local newspaper, she
and her family received many responses, though how exactly the readers were aff ected
is diffi cult to know. A question of great interest that has been investigated through
several theoretical vantage points is how the narrative process works. Some of this work
is distinctly psychological in nature, theorizing how comprehension of stories impacts
individuals and mass audiences, including narrative transportation or how respondents
are psychologically transported out of the here-and-now through story (Green & Brock,
2000), authenticity as a necessary quality of eff ective narrative content in public health
(Petraglia, 2009), and education-entertainment in which mass-mediated stories are used
purposively to instill ideas, values, and ideologies (Singhal & Rogers, 1999; Slater, 2002).
Alternative conceptualizations posit mediated characters and plots as role models (Sharf,
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Barbara F. Sharf, Lynn M. Harter, Jill Yamasaki, and Paul Haidet
42
Freimuth, Greenspon, & Plotnick, 1996) and representative anecdotes (Workman, 2005)
that enable viewers to work through problematic health scenarios encountered in real time.
In sum, current research looks to cultural health narratives as conduits for transforming
viewers/listeners, shaping their understandings, feelings, attitudes, and perhaps behaviors
in particular ways.
The connection between the personal and public runs both ways. A diff erent perspective
on transformation focuses on how personal health narratives are changed through media
and other forms of cultural exposure. One of the likely outcomes of the publication of
Caitlin’s story was public education about the illness experience, cancer diagnosis, and
treatment. Since she has been in remission, Caitlin is active in writing and speaking publicly
about cancer: “My experience with cancer has been life altering and now it is my duty as
a survivor to help good come from this bad chapter in the book of life.” However, making
personal accounts public may have much more complicated consequences.
The sad, extremely diffi cult story of Terri Schiavo, a young woman in a persistent veg-
etative state, is a case in point. The private family disagreement between Terri’s parents
and her husband over whether life-sustaining treatment should be withdrawn became
a national narrative and counternarrative that was portrayed repeatedly on television,
through the Internet, and other journalistic outlets. Members of Congress weighed in
with contrasting opinions, religious beliefs about the nature of life were invoked, and
conversations about advance directives were sparked among ordinary people. How did
the popularization of the Schiavo case aff ect the personal relations among Terri’s vari-
ous advocates? Could the argument have been negotiated with less rancor had the story
remained private? What purposes were served by the public debate that ensued from
opening this confl ict to public scrutiny? What costs were engendered? Was the human
dignity of Terri in her compromised state honored or degraded by the public retelling and
interpretation of her story?
Narrative Functionality Continued. The aforementioned functions of sense-making,
exerting control, warranting decisions, and coping with changing identity are especially
pertinent to the communication of personal health narratives (even if this occurs in a public
setting). Building community, to which we have now added increasing public awareness
and education, are necessarily narrative functions that must transpire in the public sphere.
There are two more potential functions connected to public communication we would like
to mention. Counternarratives that challenge widely ascribed master narratives are primary
and necessary aspects of health advocacy and social activism (Sharf, 2001; Zoller, 2005);
for example, poet Audre Lorde’s (1980) prescient and memorable image of one-breasted
women descending upon Congress to change what was a climate of secrecy and invisibility
surrounding breast cancer. Thus, closely related, is the use of narrative to propel changes in
social and governmental health care policies (Sharf, 2001). As our scholarship moves more
in the direction of these newer functions, we envision a parallel continuum of stories of
illness to stories of prevention, healing, and mobilization of resources.
Th e Narrative Nature of Clinical Judgment and Health CareWhat knowledge is necessary to practice medicine, mused Kathryn Montgomery Hunter
(1991), an English professor then on the faculty of Morehouse Medical School. Scientifi c
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Narrative Turns Epic
43
and instrumental logics remain central to the practice of Western medicine, reasoning skills
powerfully equipped to address certain dilemmas even as they obscure other ways of know-
ing. The almost unquestioned assumption that medicine is a science is misleading to the
extent that it fails to acknowledge how clinical success also depends on a provider’s interpre-
tive capacities to make clinical judgments in inescapably uncertain and contingent moments
(Montgomery, 2006). Montgomery enlarged dominant notions of rationality by position-
ing narrative sense-making as vital for the provision of health care (see also Greenhalgh &
Hurwitz, 1998; Mattingly, 1998).
Medicine is far from an unmediated representation of reality. Health care participants
construct understandings of experience and use those interpretive frames to guide future
actions. Providers and patients alike read physical symptoms narratively and contextually,
urged by the impulse to emplot events befalling a character, search for causality, and develop
actionable interventions. Individuals off er storied accounts of symptoms, side-eff ects, and,
if invited or supported, their experience of illness in the diverse scenes that compose their
lives. But in health care contexts, narratives also take the form of cultural scripts and even
performances which create as well as comment upon prior experiences. Norms charac-
terizing the biomedical model (e.g., detached concern) represent institutionalized scripts
about how people, labor, and health care delivery should be arranged and performed. The
biomedical model itself can be understood as a grand narrative, an ongoing structure of
values and beliefs including a hierarchy of characters, archetypal plots, and sacred spaces
(Morris, 1998). For example, drawing on ethnographic fi eldwork, Morgan-Witte (2005)
positioned nurses’ stations as backstage storytelling hubs, webs of narrative activity endors-
ing (and dismissing) value structures, and Ellingson (2005) emphasized the interconnected-
ness between backstage and frontstage role performances among providers interacting with
patients being served by an interdisciplinary oncology team. Of course, personal narratives
and cultural scripts are told and lived in material circumstances that shape performances.
In reporting on fi eldwork with a mobile health clinic serving families in rural Appalachia,
Harter, Deardorff , Kenniston, Carmack, and Rattine-Flaherty (2008) illustrated the dif-
fi culty of sustaining the taken-for-granted script of patient–provider confi dentiality amidst
shifting material and social circumstances that call it into question (e.g., paper-thin doors
separating exam rooms from waiting areas).
From a performance perspective, clinical action itself is an ever-emerging story, what
Mattingly (1994, 1998) termed therapeutic emplotment. “Therapists and patients not only
tell stories, sometimes they create story-like structures through their interactions,” argued
Mattingly (1998, p. 19), story-making that is integral to healing. To envision clinical action
as an unfolding story reaches beyond looking at narrative as raw material off ered by patients
and family members. Mattingly’s performative stance assumes narratives are lived before
they are told (see also, Langellier, 2009). In recounting her immersion with occupational
therapists, Mattingly described how they are motivated to locate themselves and patients
in an intelligible plot in the midst of interaction. The success of occupational therapy rests
with what the therapist and patient accomplish together; “One could say that a therapist’s
clinical task is to create a therapeutic plot which compels a patient to see therapy as integral
to healing” (Mattingly, 1994, p. 813).
In summary, scientifi c rationality is a limited conception of reason. Isolating a
physiological problem and situating it in a realm of its own disconnects illness from the
scenes of everyday experience.
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Barbara F. Sharf, Lynn M. Harter, Jill Yamasaki, and Paul Haidet
44
Continuing the Conversation
Broadening Narrative ScholarshipI’ve been scrapbooking a long time. So, anything of signifi cance in our family deserves its own book, be
it a prom or birth of a baby or wedding. Each of my kids have scrapbooks from birth to present day. In
terms of scrapbooking our cancer experience, initially, I just had to preserve everything. I had to preserve
every second and every nuance in case she wasn’t here anymore. I had to. I had to. And, but as it went
on and she fought harder and got stronger, then it became a book of her victory. When I wrote the letter
on the back, I said I was just proud of her and I thanked her for letting me go on the journey with her
because I learned so much from her, from humility to humor. Normally, you don’t learn those things
from your children. And she taught me all those things. So it came from preserving her life into her vic-
tory.—Tricia, Caitlin’s mom
Figure 3.3 Another surgery: Treating staph infection.
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Communication scholars naturally gravitate toward linguistic narrative in oral or written
form, but individuals use many ways to express their stories of health and illness in every-
day life. Scrapbookers like Tricia, for example, serve as memory curators, storytellers who
function as what Langellier and Peterson (2006) term keepers of the kin. By highlighting
special occasions and everyday rituals, individuals make meaning and extend family culture
to future generations. The events memorialized in Caitlin’s scrapbook mirror moments
of importance to most teens—prom, birthday parties, and graduation. In Caitlin’s case,
however, movie tickets are placed alongside photos of her left lung and leg during surgical
procedures, hardware used during reconstructive surgery, and Caitlin’s “battle ribbons”:
plastic ID bracelets from every hospital stay. Obituaries of friends who succumbed to cancer
rest beside photos of benefi ts and blood drives in Caitlin’s honor. All told, the scrapbook
off ers an aesthetic, imaginative representation of Caitlin’s storied experiences as a teenager
living with cancer.
Narrative frameworks that refl ect the multisensorial sense-making of individuals in
health and illness (Ellingson, 2009; Harter, 2009; Sharf, 2009) provide voice to individuals
who are disenfranchised or otherwise unable to verbally articulate their points of view, and
off er opportunities for “representing participants in ways that challenge social conventions”
(Cole, Quinlan, & Hayward, 2009, p. 81). Narrative scholars have turned to documentary
(Cole et al., 2009), poetic transcription (Carr, 2003), choreographed movement ( Joseph,
2008), quilting ( Jones & Dawson, 2000), and performance (Gray & Sinding, 2002), in their
work with individuals living with AIDS, cancer, or other physical and mental disabilities.
These narrative forms off er diff erent ways of understanding the lived experiences of others
while also challenging conventional representations and prevailing assumptions. For exam-
ple, the director and producers of Plan F documented the ways in which an auto mechanic’s
work infl uences and is infl uenced by his blindness through particular aesthetic choices (Cole
et al., 2009). The short fi lm is shot in the garage with a camera lens that causes only a frac-
tion of the image to be in focus at any given time and resists standard plots of disability by
instead depicting the 71-year-old mechanic’s life as “thoroughly ordinary, save for his living
with a disability” (Cole et al., 2009, p. 85). Such sensibilities ultimately enlarge traditional
research rationalities to include “knowledge derived from storied, emotive, and embodied
experience” (Harter, Ellingson, Dutta, & Norander, 2009, p. 35).
Aesthetic sensibilities extend to creative and collaborative analytic practices, as well.
Ellingson (2009) advocates crystallization methodology as a framework for blending social
scientifi c analyses with creative representations of data into a coherent text or series of
related texts. Crystallization manifests in qualitative projects that (a) represent multiple,
contrasting ways of knowing on a continuum anchored by art and science; (b) off er com-
plexly rendered interpretations of meanings; (c) utilize more than one genre of writing or
other medium; (d) include a signifi cant degree of refl exive consideration on the researcher’s
role; and (e) embrace knowledge as partial, embodied, constructed, and situated (Ellingson,
2009, p. 10). Given the interactive nature of qualitative research, much of narrative inquiry
has expanded to include the researcher’s actions for co-constructing meaning with partici-
pants, as well. Narrative scholars endorse dialogic ways of knowing that emphasize “how
researcher and participant came together in some shared time and space and had diverse
eff ects on each other” (Frank, 2005, p. 968).
The turn toward a relational and coconstructive approach to narrative sense-making
recognizes narrativity as an inherently social and dialogic communicative process (Har-
ter et al., 2005). Tricia’s unconventional representation of Caitlin’s lived experiences, for
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example, ends with a letter included in the back cover of the scrapbook. “May this book be
a reminder to you of your strength, determination, and quest for life,” writes Tricia to Cait-
lin. “Thank you for letting me take this journey with you.” In similar fashion, participatory
research methods such as photovoice (Wang & Burris, 1997; Yamasaki, 2009) and readers’
theater (Schneider et al., 2004) can empower and situate ordinary community members
as coresearchers in the design, participation, and implementation of scholarly projects. For
example, Yamasaki’s (2009) narrative analysis of late life in community settings incorpo-
rates the photographs of 34 elderly participants who live in the small town and the assisted
living facility at the center of the project. The participants chose which pictures to take;
titled and described them in in-depth interviews; and selected their favorites for display
in local community and online exhibits. In another project (Schneider et al., 2004), indi-
viduals with schizophrenia chose a topic (experiences with clinicians), conducted in-depth
interviews with each other, and then developed and performed a readers’ theater presenta-
tion of their results and recommendations for medical professionals.
Practicing Narrative MedicineInstitutional and cultural narratives articulate possibilities and preferences that social actors
invoke, orientations that lead to trained incapacities and fossilized institutions (Burke,
1935/1984). In the dominant culture of medicine, patients’ experiences deemed notable
(and chartable) typically appear as depersonalized abstractions imprinted by the omnipres-
ent voice of the medical enterprise (Poirier et al., 1992). Even so, professional cultures are
contested terrains—dynamic, situated, and indeterminate webs of sense-making (Gubrium
& Holstein, 2009). The rise of narrative medicine signifi es growing acknowledgment that
clinical judgment is an interpretive act drawing on narrative skills to integrate overlapping
stories told by patients, clinicians, and diagnostic taxonomies.
Dr. Rita Charon, Professor of Clinical Medicine at Columbia University, is a widely
recognized, pioneering authority in the practice of narrative medicine. She is Founding
Director of the Program in Narrative Medicine at Columbia, and has written extensively on
possibilities and diffi culties of practicing medicine with narrative sensibilities (e.g., Charon,
2006, 2009). Charon characterizes narrative medicine as practiced with the competence
to recognize, absorb, interpret, and be moved by stories of illness. Practicing narrative
medicine does not require providers to reject scientifi c logics, or to privilege personal anec-
dotes over randomized control trials. Instead, it presupposes that patients experience illness
in unique ways that must be juxtaposed with the generalities of a science-using practice
(Haidet & Paterniti, 2003). Narrative activity provides meaning, context, and perspective
for a patient’s predicament, sense-making that clinicians can draw on to understand the
plight of the patient and recast it into a medical story coupled with appropriate treatment
(Greenhalgh & Hurwitz, 1998).
How is narrative medicine practiced? In the realities of clinical interactions, patients’ sto-
ries frequently fail to be fully articulated, let alone understood. Why? The achievement of
what we refer to as an “aligning moment,” an experience of genuine shared understanding,
must overcome formidable obstacles. First, doctors must be open to hearing a personal nar-
rative that runs parallel to their own biomedical narratives. Second, patients must be will-
ing and empowered to tell their own stories. In an ideal situation, the inclusion of patients’
storied concerns can provide a “narrative jolt,” creating a pause in the scripts of biomedical
practice and focusing both the doctor and patient on the fully contextualized health issue.
There is still much work to be done to realize such an ideal, however, as patients’ role
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expectations often present barriers to telling their own stories, and physicians who have the
capacity to hear and understand such stories may still not have the training to know how to
respond to and incorporate into decision making what they have heard (Waitzkin, 1991).
At the 2007 National Communication Association convention, Dr. Charon, delivering
the Vice-Presidential Plenary Lecture, emphasized that, at a minimal level, all clinical inter-
actions possess a narrative structure; that said, some clinical moments are more narrative
than others. Serious illness is a breach of the commonplace, moving individuals through
disorienting terrain. In such cases, attending to human suff ering involves witnessing tran-
sitions and transformations. Charon (2006) draws on her literary background to develop
future physicians’ capacities to join with another who suff ers and act on that person’s behalf.
As students learn to closely read literature (i.e., form, genre, frame, plot, time), one may
hope that they become better equipped to listen to patients, read symptoms contextually,
and represent what is heard in a form that honors the patients’ meanings. Charon also
coaches students to write parallel charts and refl ect on what they themselves undergo in the
care of individuals. As suggested by their name, parallel charts remain separate from offi cial
medical records, and articulate socio-emotional aspects of care that may otherwise remain
unspoken. Although a literary background has oriented Charon to narrative practices that
contextualize and personalize care, other aesthetic experiences provide similar inspiration.
Notable examples include Dr. Paul Haidet’s translation of jazz improvisation in clinical con-
texts (Haidet, 2007) and Dr. Pete Anderson’s use of photography in coconstructing medical
records with patients and family members (see Harter, 2009).
Responses to Charon spawned an intellectual exchange that continued in a special issue
of the Journal of Applied Communication Research (Harter & Bochner, 2009). In that issue,
several narrative scholars explored the vulnerability (Bochner, 2009), moral dilemmas
(Thompson, 2009; Zaner, 2009), and ethos of friendship (Rawlins, 2009) that can accom-
pany narrative medicine. Authors encouraged scholars and practitioners to enlarge narra-
tive frameworks to refl ect aesthetic and performative concerns (Harter, 2009; Langellier,
2009; Sharf, 2009). Collectively, authors remind us that narratives represent equipment for
living—symbolic resources that allow individuals to size up circumstances and chart future
actions (Burke, 1935/1984). Storytelling in health care refl ects the narrative impulse and
is a powerful form of experiencing and expressing suff ering, loss, and healing. Several fi rst
tier medical journals (see Journal of the American Medical Association, Annals of Internal Medi-
cine, Health Aff airs) over the past several years have instituted sections for narrative writing.
Joining them, Health Communication, starting with Volume 24, Issue 7, will publish a regular
narrative feature titled “Defi ning Moments.” For the fi rst time within the communication
discipline, members of our academic community will be invited to submit essays illustrating
the power of narrative to foster health-related commentary and social action.
Reaching Out and Carrying OnFor all Dr. Charon’s successes—in addition to her extensive scholarship and teaching,
her work has been featured on National Public Radio and in the New York Times—she
still struggles to be understood and infl uential within her own profession. Likewise, it
is incumbent upon narrative scholars engaged in health communication scholarship and
practice to develop ways of extending their work beyond academic journals into actionable
outcomes. Consider the range of stakeholders who may benefi t from our work—general
publics, patients and families, practitioners, medical schools, activist organizations, policy
makers. Whatever inroads we have made in this regard are slight and open to improvement.
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48
The concept of “translational research,” a mandate to make theoretical and esoteric studies
accessible to practitioners and publics that can put such knowledge to everyday use, has been
emphasized in medicine and public health, but not in health communication. For narrative
scholars, a move in this direction sets the stage for learning from storied cultural and socio-
economic diversifi cation (e.g., Dutta, 2004), working toward broader systemic changes, and
striving to enrich individuals’ lives.
Throughout this whole process, strangers have contacted me, friends have prided me, my parents have
stood by me, and my whole community has helped me. They all say that I am an inspiration to every-
one due to my strength and perseverance. I enjoy the praise knowing that people believe in my ability
to get better, but I do not feel that I am an inspiration at all. I just look at it as if I did what I had to
do.—Caitlin Shoup, 2005
Figure 3.4 Caitlin’s commentary.
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Acknowledgment: The authors are indebted to Caitlin Shoup and her family for permit-
ting their story to become a signifi cant part of this essay.
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