Health Communications

Chapter review / dis 3

Chapter Review Assignment

Syllabus info: A short chapter analysis (REVIEW CHAPTER 1 and its story content) engagement/review/critique, including analysis of how they use narrative, how connect to concepts/theory, related topic questions, and broader issues: 150 points

Goals: to get you to engage critically with an existing research-based book chapter and to help you to develop your voice/approach and direction as a scholar in health communication, with your own interests.

Format and points: 2 pages–3 pages max. double spaced paper. Total for assignment is 150 points.

Paper should do the following:

Explain which chapter (CHAPTER 1) you chose to analyze, and why/connection to you?

What type of narrative data does the chapter embody (personal, autoethnography, story/stories of others, online)?

How do they integrate/interweave the narrative with theory/implications, etc.(Framework then one story, interspersed excerpt appoach, conversation btween 2 stories, etc)

What was compelling about the narrative data?

What do they get the story to “say” or speak to in terms of braoder concepts and issues?

What is the research question or central purpose of the chapter?

What do you think are strengths and weaknesses (if any) of the writing of the chapter?

How well do they integrate research sources?

How does this work fit the author’s scholarly identity (see their video or web page)

What from this chapter (approach, format, content, etc) would you inetegrate into your own upcoming prospectus/paper?

What, if anything, would you do differently in exploring this subject/writing this chapter?

How might the research be extended beyond this one chapter into additional research?

Anything else that struck you as strong or weak about the chapter?

NEXT READ CHAPTER 7 and answer questions

Gender and Health Care Communication:

Read chapter 7 of Narrating patienthood and related video of Elizabeth Hintz. See their (Hintz and Venetis) scholarly web pages, see also follow up interview she provided recently.

web pages of chapter authors:

https://comm.uconn.edu/person/elizabeth-hintz/

https://comminfo.rutgers.edu/venetis-maria (

Link

s to an external site.)

The link to Elizabeth’s talk:

Link

Note Elizabeth’s focus on the relationship of stigma and illness (particularly for women and in this case related to MUS Medically unexplained symptoms).

Note also this chapter introduces us to shorter, multisubject narratives collected through interviews. The researchers then look across the narratives for themes (such as positive and negative experiences, impact on relationships, identity, etc.).

The chapter introduces us to gender as a key variable in intersecting with health and healthcare experiences. see how gender identity, diagnostic limits, communication, and experience (health care AND relational communication and intimacy) are interconnected. see in particular Willow’s experience.

Questions to address in your reading and response/post

1 What are the predictors and characteristics of positive and negative medical and relational interactions?

2 How do the authors characterize Vulvodynia as an interpersonal (and perhaps intrapersonal) communication phenomenon?

3 Would there be any “male” equivalent to this set of stories? Would stigma work the same way?

4 Can you relate any health experiences where your audience was unable to understand, or misjudged you, or where stigma played a part?

5 What did you learn from Elizabeth’s follow up interview below–as key take aways?

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Narrating Patienthood
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Lexington Studies in Health Communication
Series Editors: Leandra H. Hernández and Kari Nixon
National and international governments have recognized the importance of widespread,
timely, and effective health communication, as research shows that accurate, patient-centered, and culturally competent health communication can improve patient and community
health-care outcomes. This interdisciplinary series examines the role of health communication in society and is receptive to manuscripts and edited volumes that use a variety
of theoretical, methodological, interdisciplinary, and intersectional approaches. We invite
contributions on a variety of health communication topics including but not limited to
health communication in a digital age; race, gender, ethnicity, class, physical abilities,
and health communication; critical approaches to health communication; feminisms and
health communication; LGBTQIA health; interpersonal health communication perspectives; rhetorical approaches to health communication; organizational approaches to health
communication; health campaigns, media effects, and health communication; multicultural
approaches to health communication; and international health communication. This series
is open to contributions from scholars representing communication, women’s and gender
studies, public health, health education, discursive analyses of medical rhetoric, and other
disciplines whose work interrogates and explores these topics. Successful proposals will
be accessible to an interdisciplinary audience, advance our understanding of contemporary
approaches to health communication, and enrich our conversations about the importance of
health communication in today’s health landscape.
Recent Titles in This Series
Copyright © 2018. Lexington Books. All rights reserved.
Challenging Reproductive Control and Gendered Violence in the Americas:
Intersectionality, Power, and Struggles for Rights, by Leandra Hinojosa Hernández and
Sarah De Los Santos Upton
Politics, Propaganda, and Public Health: A Case Study in Health Communication and
Public Trust, by Laura Crosswell and Lance Porter
Communication and Feminist Perspectives on Ovarian Cancer, by Dinah Tetteh
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Narrating Patienthood
Engaging Diverse Voices
on Health, Communication, and
the Patient Experience
Copyright © 2018. Lexington Books. All rights reserved.
Edited by
Peter M. Kellett
LEXINGTON BOOKS
Lanham • Boulder • New York • London
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Published by Lexington Books
An imprint of The Rowman & Littlefield Publishing Group, Inc.
4501 Forbes Boulevard, Suite 200, Lanham, Maryland 20706
www.rowman.com
6 Tinworth Street, London SE11 5AL, United Kingdom
Copyright © 2019 by The Rowman & Littlefield Publishing Group, Inc.
All rights reserved. No part of this book may be reproduced in any form or by any
electronic or mechanical means, including information storage and retrieval systems,
without written permission from the publisher, except by a reviewer who may quote
passages in a review.
British Library Cataloguing in Publication Information Available
Copyright © 2018. Lexington Books. All rights reserved.
Library of Congress Cataloging-in-Publication Data
Names: Kellett, Peter M., editor.
Title: Narrating patienthood : engaging diverse voices on deeper cultural health
narratives / edited by Peter M. Kellett.
Description: Lanham : Lexington Books, [2019] | Series: Lexington studies in health
communication | Includes bibliographical references and index.
Identifiers: LCCN 2018046663 (print) | LCCN 2018047623 (ebook) |
ISBN 9781498585545 (Electronic) | ISBN 9781498585538 (cloth)
Subjects: LCSH: Communication in medicine. | Physician and patient. |
Narration (Rhetoric) | Hospitals—Sociological aspects.
Classification: LCC R118 (ebook) | LCC R118 .N366 2019 (print) |
DDC 610.69/6—dc23
LC record available at https://lccn.loc.gov/2018046663
∞ ™ The paper used in this publication meets the minimum requirements of American
National Standard for Information Sciences—Permanence of Paper for Printed Library
Materials, ANSI/NISO Z39.48-1992.
Printed in the United States of America
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Contents
Acknowledgmentsvii
Introductionix
Peter M. Kellett
PART I: NARRATING PATIENTHOOD: VOICING,
EMPOWERING, ADVOCATING
1
1
Narratives of Patient Experience: Benefits for Multiple Audiences
Rachel M. Reznik
3
2
From Stories to Discoveries: Patients’ Narratives as Advocacy in
Biomedical Research
Krista Hoffmann-Longtin and Adam Hayden
17
Cultural Communication Competency as a Two-Way Street: My
Journey from Medical Avoidance to Patient Self-Advocacy
Mark P. Orbe
35
If I Die, Who Will Tell Their Stories? Emerging Health Legacies
Following the 2014–2016 Ebola Epidemic
Crystal Daugherty and Amanda Young
47
Copyright © 2018. Lexington Books. All rights reserved.
3
4
PART II: NARRATING PATIENTHOOD: DIFFERENCES
THAT MATTER
5
African Americans and Hospice Care: On Social Risk, Privacy
Management, and Relational Health Advocacy
Patrick J. Dillon and Ambar Basu
v
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61
63
vi
6
7
Contents
“Can You Please Direct Me to a Doctor That Has a Heart?”
A Stage IV Breast Cancer Patient Narrative
Andrea L. Meluch
85
Exploring the Effects of Patient-Provider Communication
on the Lives of Women with Vulvodynia
Elizabeth A. Hintz and Maria K. Venetis
99
8
Queer Patienthood
Laura E. Brown
9
An Autoethnographic Account of Navigating Patienthood as
a Person with Hearing Impairment
Alexis Z. Johnson
PART III: NARRATING PATIENTHOOD: INTERSECTIONS
OF COMMUNICATION AND THE PERSONAL,
RELATIONAL, PROFESSIONAL, AND CULTURAL
10
11
Copyright © 2018. Lexington Books. All rights reserved.
12
From Consumer to Community-Based Researcher: Lessons
from the PLHIV Stigma Index
Andrew Spieldenner, Laurel Sprague, Ari Hampton,
Meta Smith-Davis, Dwight Peavy, Ann D. Bagchi, Barb Cardell,
Vanessa Johnson, Gina Brown, and Russell Brewer
133
149
151
The Gendered Nature of Generosity in Post-Hysterectomy
“Dear Honey” Letters
Jill Yamasaki
167
The Narrative Journey and Decision-Making Process of
Plastic Surgery Patienthood
Ashley M. Archiopoli
185
13
Narrative Sense-Making in Systemic Lupus Erythematosus
Katherine M. Castle and Jody Koenig Kellas
14
Healthy Mother, Healthy Baby: An Autoethnography to
Challenge the Dominant Cultural Narrative of the
Birthing Patient
Jennifer E. Ohs
15
117
Ableist Biases: A Tale of Three Lives
Joyeeta G. Dastidar
205
227
259
Index271
About the Contributors
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279
Acknowledgments
Copyright © 2018. Lexington Books. All rights reserved.
I would like to thank Hema and Zola for all their support throughout the
writing of this book, and for helping me to keep a healthy life-work balance
in everyday life. My own story would be a much duller one without you
both. Thanks to all the scholars of health involved in this book (and those not
involved) who focus on collecting and exploring the experiences of patients
everywhere. It is an important work, as it enables us to try to make the world
around us fairer and healthier. Special thanks to all the patients who contributed narratives from their lives that made this book possible. I would also
like to include a special acknowledgment here to all the chapter authors who
served double duty as both researcher and patient. Writing from your own
lives is a much-appreciated form of invitational bravery. Finally, I would like
to acknowledge the enormous impact that Walter Fisher has made through his
work to those of us who do narrative scholarship in the field of communication. He passed as this book was nearing completion.
vii
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Introduction
Through the recent process of writing my own story of heath communication
and disease, Patienthood and Communication: A Personal Narrative of Eye
Disease and Vision Loss (2017), I became acutely aware of several “truths” of
my own experience and its narration. Across the five years documented in my
story I had to learn how to become an empowered, self-advocating patient.
It was not easy, and I had to unlearn a lot of personal, familial, and cultural
conditioning to get there. The better I got at this, though, the better my health
care. I also learned that my story—my patienthood narrative—was not just
a form of representation for my experience, but was also fully a speech
act—albeit a long one. It could do things like encourage others to tell their
stories, advocate for better information for fellow patients, and actively help
in some small way to shape the discourse and level of understanding around
the disease I have (MacTel), and that I share with my identical twin brother,
David. I became aware that who I was, where (and when) I lived, and how I
expressed myself made a difference. I am a white, middle-aged, (fairly) articulate, (as of now) able-bodied, middle-class, straight, male with reasonably
good health insurance, a rare eye disease, and an encouraging and protective
spouse. I also happen to live where I am surrounded by three major research
hospitals with substantial ophthalmology departments. Others, I knew, would
likely have very different experiences with this disease (and other diseases/
illnesses) based on who they were and where (and when) they lived. I also
learned that various forms of communication (both face-to-face, and online),
and contexts of communication (intrapersonal, relational, organizational,
familial, and so on) were, and remain, central to how I navigate, construct,
make sense of, and reduce the uncertainty of, my illness experience. I am a
relational partner, a friend, a family member, a patient with ongoing doctorpatient relationships, and a communication professor, with an eye disease that
ix
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x
Introduction
affects vision. Each and all these aspects interconnect, as they do for others in
different and important ways. But what to make of all this in a broader context of the experiential, and scholarly world beyond myself and my disease?
And, so, this book.
I wanted to hear the experiences of others undergoing parallel or perhaps
even quite different struggles with, and around, “truths” like these. Specifically, I wanted to collect, in narrative form, a broad range of health communication experiences that enable us to examine and address more closely the
following questions: (1) How do patient narratives provide the means for, and
illustrate the development of, self-empowerment as patients, increased understanding of multiple stakeholders involved in the care process, advocacy and
even activism on behalf of patients, and more effective communication as a
basis for better care? (2) How do various identities (such as race, class, gender, sexuality, and disability) intersect with, and impact, people’s narrated
experiences of patienthood? and (3) How do people in various patienthood
processes and experiences describe communication as central to those experiences? These three key questions, and related issues, became the central
concerns of the three parts of this book.
Part I (Voicing, Empowering, Advocating) begins with two chapters that
illustrate the power of narrative accounts of patienthood experiences to
inform various publics (Reznik), and to advocate for patients in a variety of
important ways (Hoffmann-Longtin & Hayden). The succeeding two chapters present more personal accounts of the power and importance of patient
narratives. Chapter 3 (Orbe) shares the long-term development of his selfunderstanding and empowerment as a patient, for example, in interactions
with health-care providers as well as orientations to accessing health care as
a patient. Chapter 4 (Daugherty & Young) provides a much-needed global/
advocacy perspective in asking us how telling the stories of (and for) others
(here the poor of war-torn Syria) is an important and impactful part of health
communication scholarship and practice.
Part II (Differences That Matter) includes chapters that centrally examine
cultural differences and identities in how they impact health behavior, access,
and broader issues of inequity and communication. Chapter 5 (Dillon &
Basu) illustrates how race can impact how African Americans think about and
access/engage in end-of-life care and the dying process. Chapter 6 (Meluch)
vividly shows how the health-care process and experience of one woman is
impacted by socioeconomic (class) factors. It illustrates how care providers
and patients are impacted by economic status differences. Chapter 7 (Hintz
& Venetis) explores how culturally grounded assumptions about gender mitigates the diagnostic and treatment process in ways that can negatively impact
women and their lives. Chapter 8 (Brown) foregrounds sexual identity, as it
can variously impact the health-care process and related communication, by
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Introduction
xi
exploring heath care through the voice of a queer patient. Finally, this part
is completed by chapter 9 (Johnson), which is a moving account of how disability impacts health communication and care. None of these chapters claim
to speak for or represent whole segments of our population yet, together, they
do provide an interesting and provocative account of how differences matter
in health communication.
Part III (Intersections of Communication and the Personal, Relational,
Professional, and Cultural) expands and illustrates the discussion by providing detailed narrative accounts of various, and very different, health-care and
related communication experiences. Chapter 10 (Spieldenner et al.) shows us
how the researcher and the topic of the research become deeply intertwined,
and how the persona of the “Community Researcher” takes form as patient
and researcher fuse together. Chapters 11 (Yamasaki) and 12 (Archiopoli)
illustrate the important and fascinating world of online narration and support,
where an organic relationship between the personal and public, as well as
internal (decision-making, etc.) and external aspects of narrative and narration occurs. They evoke the important issues of representation, relationships,
and narrative sharing experiences. Chapter 13 (Castle & Kellas) takes us into
the world of Lupus—showing us the important contribution to our understanding of patienthood of examining the typical plot archetypes of patients
with Lupus. Chapter 14 (Ohs) takes us through four birth experiences of the
author that richly illustrate the need to understand what the effective communication of care means in context, and the importance of the culture of
care provider settings, in the birthing experience. Deconstructing dominant
cultural narratives, this chapter also powerfully illustrates the intersection
and blending of researcher and patient identities. Blending medical and
familial identities, chapter 15 closes the book with an intriguing comparison
of two cases that have the writer (Dastidar) also approaching patienthood as
both doctor/researcher in examining one narrative case (Dax) and sister in
examining the second narrative case (Shuvo). Medical, familial, and cultural
contexts of the lives of two different patients are compared.
Looking across the parts and chapters of this book, one of the most rewarding aspects of this project was, for me, seeing the rich variety of approaches
to what it means to do narrative health research. Some chapters shared autoethnographic narratives. Others report on work that involves collecting the
personal narratives of others, both singular and in multiples. Some chapters
explore diachronic narratives—tracing changes such as growth as a patient
across time. Others examine specific aspects or content of narratives synchronically, such as plotlines or themes as they illustrate or forward particular theories. Interestingly, still others took narrative in a broader discursive
and cultural sense of collectively held accounts (metanarratives), rather than
as the speech acts of individuals. Others approach narrative as something
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xii
Introduction
implied behind, and tying together, a set of facts. For these scholars, hidden
narratives—the story behind the story/stories—can be skillfully revealed.
Finally, of note, it is wonderful to read narratives of health and illness written by colleagues. Several chapter authors took the brave step in sharing from
their own lives, and in doing so, finding ways to balance professional and
personal dimensions of self. Given this rich variety of narrative work in this
volume we, as readers and scholars, are engaged by different articulations of
narrative research and patient narration.
The studies in this volume, taken collectively, bring together and help to
extend and apply some key ongoing conversations in narrative approaches
to health communication. Several of the chapters help to push forward our
understanding of cultural and intercultural (and inter-identity) communication competence as a crucial line of inquiry and practice. Several chapters
directly address and show the development of patient self-empowerment. The
lived reality of inequity, diversity, and difference, and some of the major gaps
in understanding that manifest systemically from these factors in health care
are richly illustrated. Other key concepts that appear throughout the book are
the communicative workings of stigma, sense-making, uncertainty reduction,
and patienthood. Crucially throughout the book, chapter authors ground their
work in, and make substantial contributions to, the narrative frameworks
developed by Frank (illness narratives), Charon (narrative medicine), and
others. We owe a great deal theoretically and practically to these scholars as
we all try to make the world fairer and healthier.
With the variety and interest of the narrative studies included in this
volume, comes limitations. Of note is the reliance on stories that largely
originate in the United States. Much could be done in subsequent research to
compare and contrast patient narratives of people more globally. Similarly,
much could be done to examine patient experiences across the lifespan.
How do illnesses and health issues have long-term impacts on people’s life
stories? How do people’s life stories impact the illness experience? There is
much work yet to be done in examining the ever-changing reality and impact
of technology and our online lives on our health narratives. Finally, there
is much work to be done in examining the impact of contemporary world
dynamics—war, displacement, the refugee experiences of many on narrations
of health and illness. With these nods to the limits of this current work, we
glace toward future possibilities for work that explore how and why people
narrate their patienthood as they do.
REFERENCE
Kellett, Peter M. (2017). Patienthood and communication: A personal narrative of
eye disease and vision loss. New York, NY: Peter Lang.
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Part I
Copyright © 2018. Lexington Books. All rights reserved.
NARRATING PATIENTHOOD:
VOICING, EMPOWERING,
ADVOCATING
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Chapter 1
Narratives of Patient Experience
Benefits for Multiple Audiences
Copyright © 2018. Lexington Books. All rights reserved.
Rachel M. Reznik
On the first day of my job as a research assistant, interviewing patients living with HIV, I sat anxiously waiting for the first patient in a small, bureaucratic office. He arrived in baggy jeans, a t-shirt, and a jacket. Now that my
interviewee was here in person—a living, physical presence—my anxiousness quickly transformed into nervousness. What if I did not ask the right
questions? What if I made a mistake? As I awkwardly started the interview
process, and asked him questions about his illness and treatment, my nerves
faded away. He was talking with great ease. He was telling me his story and
wanted to be heard. Something simple but significant had occurred: the ease
and fluency communicated themselves to me; and the desire to be heard
called to a desire to hear. It was my privilege to listen.
Narratives provide a compelling way for those experiencing a health issue
or illness to share their experience. Narratives are important, as one’s life
story, “which every person constructs by weaving together the variety of
events and experiences that make up life into a balanced entity,” can be interrupted by events such as illness which appear to put that experiential thread
at risk (Overberg, Alpay, Verhoef, & Zwetsloot-Schonk, 2007, p. 937). However, these stories also afford benefits to other audiences, as they can foster
social support for others experiencing the same or similar issues; and can
open an avenue for providers to improve care, and for students to learn about
patients’ experience of illness and health care.
Put simply, narratives are “stories with a teller, a listener, a time course,
a plot, and a point” (Charon, 2006, p. 3). Central to Charon’s definition is a
listener, referring to other patients, lay caregivers, professional caregivers,
providers, and medical students. Common interest in narrative across a broad
range of disciplines in the later part of the twentieth century “emphasizes its
importance in expressing and structuring discourse, identity, and experience”
3
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4
Rachel M. Reznik
(Spencer, 2017, p. 374). Narratives involve people making meaning by interpreting and articulating connections between “countless seemingly unconnected experiences, beliefs, attitudes, and understandings, and so on” (p. 33)
and are “informed by and reveal the contexts within which their relevant
understandings are formed and acted upon” (Babrow, Kline & Rawlins, 2005,
pp. 37–38). As Peter Kellett (2017) relates in his personal narrative of eye
disease and loss of vision, a narrative may include an account of a patient’s
internal processes, such as their thoughts and feelings, as well as addressing
external processes such as their communication and behaviors, and the context of those processes.
Copyright © 2018. Lexington Books. All rights reserved.
THE IMPACT OF UNCERTAINTY AND STIGMA
While it can be difficult for patients to disclose their stories to others, there
are several benefits to doing so, including a way to share the stress, engage
in sense-making, and connect with others who may be more knowledgeable
than the patient regarding their condition (Kellett, 2017). In the sharing process, such patients may also gain a greater level of self-understanding and
enhance their sense of self-esteem (Herxheimer & Ziebland, 2003). Sharing
one’s personal health-related story is a means of reducing the shame individuals may feel about their health condition or status, and of encouraging greater
inclusivity (Davis & Quinlan, 2017). Narratives can help create “hopeful
communication” and even bring humor into otherwise very serious situations
which might be fraught with uncertainty, emotional upheaval, and a fear of
loss of one’s identity (Kellett, 2017). This might be especially important for
those facing terminal or life-altering health conditions. Significant health
events may create a climate of uncertainty not only for patients but also their
families, and some of those events may result in stigma as well. The following section explores the impact of both concepts on narratives for patients
themselves, their fellow patients, and their loved ones, and addresses the
reciprocal relationship between narrative and experience.
According to Brashers (2001), “uncertainty exists when details of situations
are ambiguous, complex, unpredictable, or probabilistic; when information is
unavailable or inconsistent; and when people feel insecure in their own state
of knowledge or the state of knowledge in general” (p. 478), and it is a core
feature of both acute and chronic illnesses (Brashers et al., 2000). Uncertainty
management theory (UMT) helps explain the process by which individuals
experience, appraise, and respond to uncertainty around health information
(Brashers, 2001). According to UMT, appraisals about the meaning of uncertainty need not be negative, and indeed reducing uncertainty is not the only
goal individuals have; they may want to maintain levels of uncertainty or
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Narratives of Patient Experience
5
even increase their uncertainty if certainty is believed likely to result in psychological distress (Brashers et al., 2000). One way that individuals manage
their uncertainty (e.g., increase, decrease, or maintain it at the same level) is
by seeking information from others, or by avoiding information, thus either
stimulating or constraining communication (Brashers et al., 2000).
These varied communication responses have implications for story tellers
and story listeners alike. Kellett (2017) describes a conversation in which
his struggles were shared with a neighbor: the neighbor’s response, recounting how someone had been finally cured, after receiving holistic Eastern
medicine, of a condition which had hitherto stumped experts in Western
biomedicine, induced feelings of uncertainty or “new ambiguity” within
him. Hearing others’ stories can play a role in uncertainty management as
these narratives might have the effect of reducing uncertainty, or they might,
alternatively, increase uncertainty. This uncertainty also extends to patients’
loved ones. Some people in this category reported avoiding health information as a way to resist the possibility of overexposure to such information, and
not be reminded about another’s health issues too frequently, or to maintain
privacy boundaries and keep their distance from details deemed by the listener to be too private or intimate (Barbour, Rintamaki, Ramsey, & Brashers,
2012). Avoiding information makes it possible for people to remain hopeful
and optimistic in cases where what they eschew is likely to be disconfirming
information (Rains & Tukachinsky, 2015).
Another response to uncertainty is to seek out new information. For those
with either acute or chronic illness, information may be sought to understand
the diagnosis, make treatment decisions, and help make predictions about
the prognosis (Brashers, Goldsmith, & Hsieh, 2002). Thus, illness narratives
are not only beneficial for the story tellers themselves, but also for fellow
patients who are facing the same or similar situations and seeking insight
into their conditions, as these narratives may serve as examples of how to
complement, edit, and orient one’s own life story (Overberg et al., 2007).
People report that they want to read narratives about topics which they are
experiencing in a negative way, thinking about, or directly suffering from
themselves, thereby using other patients’ stories to further cultivate and nurture their own story into a balanced, meaningful narrative (Overberg et al.,
2007). Narratives are sought out to gain practical information about how to
cope with emotions, understand how the illness will impact one’s daily life,
and realistically anticipate what physical discomforts are likely to come with
the illness (Overberg et al., 2007).
In addition to uncertainty around their symptoms and prognosis, people
may also feel uncertainty about the stigma associated with their illness (Checton, Greene, Magsamen-Conrad & Venetis, 2012). Irving Goffman (1963)
described stigma as “an attribute that is deeply discrediting” (p. 3). Stigma
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Rachel M. Reznik
has also been described as the disgrace that is linked with particular circumstances, characteristics, traits, or behaviors (Scambler, 1984). Rintamaki and
Brashers (2010) conceptualize stigma as the “negative attitudes held about
individuals who are perceived to possess a trait deemed negative by the community at large, as well as those with whom these individuals are associated”
(p. 157). The experience of “normal” group membership might be jeopardized or rendered very different for individuals who are thus stigmatized.
Many health issues are associated with some degree of stigma, including
mental illness, alcohol- and substance-abuse disorders, human immunodeficiency virus and acquired immune deficiency syndrome, chronic obstructive
pulmonary disease, cancer, and neurological conditions. Diseases are often
stigmatizing to the extent that they are accompanied by mental or physical
limitations (Burgener & Berger, 2008). Having a stigmatizing illness may
predispose a person both to feelings of shame (Goffman, 1963; Scambler,
1984), and to potentially being treated differently by able-bodied people
(Braithwaite, 1991). Stigma can negatively impact individuals’ self-worth
and their well-being (Davis & Quinlan, 2017). As well as shame, further
consequences of stigma may include financial insecurity, and social rejection
and isolation (Fife & Wright, 2000).
Indeed, a problem facing some stigmatized individuals is that their social
interactions are disrupted by the repercussions of their conditions (Albrecht,
Walker, & Levy, 1982). These diminished social networks and the concomitant lack of social support can hamper stigmatized individuals’ ability
to find value and significance in their lives (Rintamaki & Brashers, 2010).
However, stigmatized individuals are not merely reactive victims; they act
in vigilant and strategic ways to protect themselves during social interactions
(Rintamaki & Brashers, 2010). This could translate to a decision not to disclose one’s story as a means of self-protection or, conversely, could result in
the choice actively to tell one’s story as a means of education and advocacy
(Rintamaki & Brashers, 2010).
The literature on stigma in chronic disease indicates that stigmatization,
originating from self or others, is widespread, emotionally detrimental,
and liable to affect both quality of life and health-maintenance behaviors.
To understand how stigma affects social interaction, the cognitions and
behaviors of both the stigmatizers and the stigmatized need to be examined
(Rintamaki & Brashers, 2010). First, to understand how stigma guides social
interaction, one must investigate the cognitive processes that stigmatizers
engage in. These processes include categorization arising from a need for
group protection, which in turn leads the stigmatizers to view the stigmatized
primarily through a stigmatizing lens. Thus, a question for communication
scholars should be: “Does a category such as illness or disability narratives
risk perpetuating a reductive pathologizing lens?” (Spencer, 2017, p. 377). As
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Narratives of Patient Experience
7
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individuals tend to express their attitudes during social interaction, stigmatizers could in such terms either avoid or discriminate against the stigmatized
individuals. This could lead to individuals’ narratives or stories not being
heard. Additionally, those who experience stigma engage in a variety of
cognitive processes to help them cope with their stigmatized status and may
intentionally communicate their status to others. Individuals whose stigmatizing conditions are not clear, or known to others, constantly deal with dialectical tensions such as “to display or not to display; to tell or not to tell; to let on
or not to let on; to lie or not to lie” (Goffman, 1963, p. 42).
People manage stigma in numerous different ways (Davis & Quinlan,
2017). One way involves associating with others who share the same stigmatizing condition (Goffman, 1963). This is analogous to the kind of information seeking, from patients with similar narratives, which was discussed
earlier in this chapter. Sharing narratives can help people with stigmatizing
conditions recognize and understand that they are not alone. Narratives
can serve as a vehicle to connect and heal and may minimize stigma while
increasing inclusivity (Davis & Quinlan, 2017).
However, there may also be complications around sharing one’s story, as
disclosing a stigmatized status has the potential to incur negative outcomes,
such as social ostracism. Consequently, people living with stigmatizing diseases may choose to conceal their status which can, in turn, prevent social
networking or impair their access to beneficial resources (Rintamaki &
Brashers, 2010). Disclosure can be advantageous because concealing central
aspects of one’s self, such as one’s marginalized identity, can over time lead
to negative health consequences (McKenna & Bargh, 1998). However, some
with stigmatized conditions reported that they chose to avoid seeking health
information due to concerns about how they would be perceived (Barbour
et al., 2012). The Internet may afford a means of alleviating some of these
stigma concerns.
THE ROLE OF ONLINE NARRATIVES
Electronic media provides another way for patients to share their stories
(Christiansen, 2011). Individuals’ health and the symptoms of their condition
are generally not the impediments to participating in computer-mediated communication that they may sometimes be in face-to-face encounters (Campbell
et al., 2001). The Internet supplies a diverse assortment of resources for
people seeking health information, including online support groups, blogs
(Rains & Tukachinsky, 2015), and databases containing patient experiences
(Giesler et al., 2017); indeed, an immense number of illness stories can now
be found online (Overberg et al., 2017).
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Rachel M. Reznik
The ability to connect with other patients who have experienced a similar event can be very empowering (Kellett, 2017). Online narratives offer
a way for individuals to tell their stories and receive social support from a
variety of folks (including friends, family, coworkers, people undergoing the
same health issue or a similar one, and even strangers), and are also a good
means of expressing emotions (Harris, Cleary, & Stanton, 2015). Narratives
shared on illness-related blogs have not only abetted information exchange
and social support, but also facilitated emotional catharsis (Keim-Malpass
& Steeves, 2012), and are thought to encourage emotional connections and
empathic responses from audiences (Yu, Taverner, & Madden, 2011). Using
positive words in online narratives is related to an increase in positive mood
six months later, while, perhaps somewhat surprisingly, using negative emotion words has been associated with being less depressed (Harris et al., 2015).
For newly diagnosed patients, online narratives can be a valuable resource,
while the process of sharing information can be fulfilling in itself and may
actively foster connection with other patients (Kellett, 2017). Indeed, motivations to visit online health support groups include giving support to others as
well as forming new relationships (Chung, 2014).
From the perspective of loved ones, it can sometimes be difficult to know
how to react to patients (Kellett, 2017), and online narratives may contribute
constructively to this process. Patients and their partners experience illness
differently (Checton et al., 2012). In several contexts, the Internet is said to
encourage deeper social connectedness among individuals (Rainie & Kobut,
2000). Visitors, including mostly friends and family members, to websites
recounting women’s narratives about their experiences with cancer reported
that the websites were useful in providing updates on physical and mental
states, and helpful in making the visitors feel closer to the participants (Harris
et al., 2015). Thus, online narratives have represented a way for visitors both
to receive health information, and emotionally connect with patients.
Online narratives may also be a means of eroding some of the barriers
normally associated with face-to-face communication; and there are specific
benefits to gaining support via the Internet. Online support groups can be a
promising avenue for members to share their stories as they may, in so doing,
glean benefits such as emotional validation, routes to new information, and
cathartic experiences (Greer, 2000), presumably through participating in
self-disclosure and intimate communication (Walstrom, 2000). Indeed, going
to an online support group to share one’s story can be especially beneficial,
in that online participants have engaged in more emotional support and selfdisclosure than is typically the case in face-to-face groups (Perron, 2002).
Additional benefits include decreased loneliness (Fogel, Albert, Schnabel,
Ditkoff, & Neugut, 2002) and the opportunity for members to find acceptance
(McKenna & Bargh, 1998). These benefits can be particularly important for
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Narratives of Patient Experience
9
individuals who are very ill, as all-consuming illnesses may entail reduced
social involvement and a narrowly limited sense of self (Charmaz, 1991).
Further benefits of online social support groups which may be of notable use
to ill individuals include the avoidance of time-pressure, by being able to
respond and contribute at one’s own convenience (Perron, 2002); the acquisition of a sense of autonomy; and the experience of comfort or relief in the
disclosure of stigmatizing and potentially embarrassing information due to
the relative anonymity provided by the Internet (Walstrom, 2000).
Databases of patient experiences are another way for narratives to be
shared online. The international research network DIPEx (Database of
Individual Patients’ Experiences) presents online narratives of people’s
experiences with health issues and illness which are collected in a systematic and rigorous manner (Giesler et al., 2017). Healthtalkonline.org (HTO)
is an Internet database produced via a partnership with DIPEx and HERG
(the Health Experience Research Group, part of the Nuffield Department of
Primary Care Health Sciences at the University of Oxford), offering a large
number of patient stories assembled to benefit other patients, health care
professionals, and researchers (Herxheimer & Ziebland, 2003). The material
for the website is created by qualitative researchers at HERG. For each condition or topic studied, a maximum variation sample of patients or caregivers
is interviewed, and the result to date is a collection of 3,500 interviews on
over 85 health issues and conditions (healthtalkonline.org). Users of the site
can watch and listen to the patients’ stories or read transcripts from the interviews. In addition to viewing patient narratives, individuals can read carefully
researched summaries of the themes that emerged from the interviews in the
context of current clinical evidence and best practices. HTO covers a wide
range of health conditions and their treatments, and records patients’ experience of their impact on daily lives, interpersonal relationships with loved
ones, colleagues, and caregivers, and interactions with health-care professionals. These insights into the patients’ interactions are a source of useful
information not only for other patients experiencing similar health conditions,
and their loved ones, but also as a training tool for health-care professionals.
Nonetheless, it must be kept in mind that electronic platforms might not
be conducive to sharing one’s stories. For example, warmly affirming stories
(e.g., cat videos) and harshly polarized ones (e.g., political opinions) work
better on Facebook than do awkwardly personal health disclosures (Kellett,
2017). While many women had a positive experience overall in telling their
stories on a website, some women reported several barriers to using online
tools to document their narratives, including time pressures, not feeling
comfortable with computers or lacking easy access to a computer, trouble
accessing the website itself, physical difficulties that prevented them from
going online, and receiving fewer visitor comments than they had expected
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10
Rachel M. Reznik
(Harris et al., 2015). Additionally, while narratives in these contexts can
indeed influence individuals’ attitudes and health behaviors, they may be
less useful at transmitting objective information, and may sometimes be misleading (McQueen, Arnold, & Baltes, 2015). And young people who share
their stories online have particular concerns, including feeling embarrassed,
facing criticism or bullying from others, and safety-related issues (Yu et al.,
2011). Internet-based interventions generally have modest engagement by
participants; but with that said, even brief engagement can produce positive
outcomes (Harris et al., 2015).
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USE OF NARRATIVES IN THE CLINICAL SETTING
As much as there is a benefit to story-telling, there is also a benefit to “storylistening” by health professionals (Ziebland, 2013). To that end, narrative
medicine, calling for health-care professionals to listen carefully to, empathetically engage with, and reflect on patients’ stories is recommended as
an ideal standard as a compassionate and effective way to practice medicine
(Charon, 2001, 2006). Narrative-based medicine involves dedicated attention to what patients say and how they say it, and representation of patients’
experiences—sometimes with the intent of sharing this with the patients
themselves—in the cause of increasing affiliation (with patients, other health
professionals, and institutions) (Charon, 2005). Story-telling is used as an
instrument to facilitate patients’ emotional expression regarding their feelings, concerns, and reservations about their illness (Fioretti et al., 2016). The
approach of narrative-based medicine, whereby clinicians elicit and listen to
patients’ stories in a medical encounter, is undertaken to increase accuracy
about diagnosis, improve treatments, and build stronger relationships between
patients and health-care professionals (Ziebland, 2013). Additionally, this
approach results in decreased levels of pain, stress, and alienation, and an
increase in levels of well-being, confidence, and cooperation regarding the
illness (Fioretti et al., 2016). From the perspective of clinicians, understanding patients’ stories and experiences has developed mutual understanding;
and interviews were found to be “fascinating, encouraging, and comforting”
(Ziebland, 2013, p. 278).
USE OF NARRATIVES IN MEDICAL EDUCATION
Regarding medical education, individuals’ ability to learn is enhanced when
they hear patients’ stories. Patients themselves recognize the value of using
stories as a teaching resource, as well as to help health-care professionals
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Narratives of Patient Experience
11
understand the social effects and consequences of health conditions, and
how these conditions influence people’s day-to-day experiences (Yu et al.,
2011). Patient stories thus have the dual benefit of empowering those patients
themselves and assisting students in learning (Gidman, 2013). Within that
context, patients are increasingly being encouraged to take an active role in
health-care education and to bring their voices into the learning process (Jha,
Quinton, Bekker, & Roberts, 2009); and using patient experience is one way
to enable patient voices to be heard in the curriculum (Kumagai, 2008).
Although patients report wanting to read the text of narratives from other
patients (Overberg et al., 2007), there appear to be advantages associated with
digital recordings of patient narratives for health-care students. Hearing a
patient’s words evokes stronger emotions than merely reading the words of a
transcribed narrative, and generates empathetic responses (Field & Ziebland,
2008). Listening to digital stories allows for reflection and for the student to
contextualize patients’ experiences in relation to their daily lives and significant relationships (Christiansen, 2011). Students reported that watching video
stories of real patients made them more interested (Brown & Macintosh,
2006; Kommalage & Senadheera, 2012), increased their motivation to learn
(Brown & Macintosh, 2006), and helped with knowledge acquisition and
the understanding of patients’ problems (Kommalage & Senadheera, 2012).
Indeed, students reported that they gained a “patient perspective” and hence
a deeper understanding of an illness from viewing online narratives (Powell,
Scott, Scott, & Jones, 2013). Capturing patients’ experiences on video and
film allows for themes and issues to emerge that might not otherwise arise in
a clinical encounter (Christopher & Makoul, 2004). Specifically, students can
be exposed to problematic and sensitive topics (Powell et al., 2013). Patients
can be encouraged to be both positive and negative while telling their stories
(Callahan, 2012) but may be less inclined to respond in these ways in a faceto-face medical encounter.
A 2008 study conducted by researchers at HERG found that several
medical tutors (i.e., professors and other teachers at the university) use the
site Healthcareonline.org in their teaching (Field & Ziebland, 2008). HTO
was used with students studying for a spectrum of health professions, and
training as doctors, nurses, midwives, pharmacists, clinical psychologists,
occupational therapists, and medical sociologists (Field & Ziebland, 2008).
Five site characteristics made the website particularly useful, namely: a wide
array of illness and health conditions, many interviews per condition, patient
authenticity, choice of interview format (written, audio, and video), and the
high quality of the research underlying HTO. Tutors reported using HTO to
engage and stimulate students with the wide-ranging experiences of patients
from diverse backgrounds, reflecting the variety they would likely encounter
in practice. Clips were embedded in lectures to provide information about
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12
Rachel M. Reznik
various conditions or to demonstrate a lived patient experience. Tutors also
used HTO to make concepts and theories relevant, to demonstrate diverse
patient perspectives on illness, symptoms, and decision-making, to appeal to
the varied learning styles of students, and to develop new teaching methods.
E-learning (e.g., the use of websites or DVDs) encourages student-centered
learning in medical education by empowering students to become actively
involved, to participate, and to take responsibility for the learning process
(Thakore & McMahon, 2006). However, while many educators report using
electronic narratives in their teaching, there is a paucity of research to explicate in detail what it is that students garner from these narratives, and how
it might impact their learning (Field & Ziebland, 2008). One recent study
involving patients’ video experiences found that students who viewed video
clips from patients describing a medical procedure went on to perform better in a medical exam, and showed greater confidence with communication,
compared to students who viewed a module of a doctor discussing case histories and describing the medical procedure (Snow, Crocker, Talbot, Moore,
& Salisbury, 2016).
CONCLUSION
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Narratives constitute an important means for individuals who are experiencing a health issue or illness—from a variety of perspectives relative to
that situation—to share their experiences, generate social support for others
encountering the same issues, and establish an engaging way for clinicians
and students to learn about patient experience of illness and health care.
These are some of the key ways in which narratives can facilitate better health
communication.
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Rachel M. Reznik
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Chapter 2
From Stories to Discoveries
Patients’ Narratives as Advocacy
in Biomedical Research
Krista Hoffmann-Longtin and Adam Hayden
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Biomedical researchers are trained to use positivistic approaches to develop
efficacious treatments and pursue cures for illness and disease. Accordingly,
they may rarely engage persons living with the disease in the development of
research questions and protocols (Sacristán et al., 2015). Just as patient narratives can create therapeutic partnerships in delivery of treatment (DasGupta
& Charon, 2004), they offer value to the research process to emphasize the
person with the disease, rather than the disease, in isolation. In this chapter,
we are interested in the role of patient stories as tools for influencing the
biomedical research process (Greenhalgh, 2009; Panofsky, 2011). Applying
Ellingson’s (2009) approach to crystallization, we explore intersections in the
literature on patient advocacy, our own narratives, and those from biomedical
researchers and patients. We seek to uncover the value and implications of
involving not only patients but also patients’ stories (Hyden, 1997) in creating an agenda for research in healthcare.
ENGAGING WITH A PATIENT
NARRATIVE: AN EXEMPLAR
Adam
Shuffling along, parallel to the buffet table, displaying gait instability and
balancing a ceramic catering plate with my left hand, plagued by neuropathy
and weakness, I steadied myself before hooking my cane over my left arm
to grasp tongs in my functional right hand and serve myself salad. Feeling
comfortable in my otherness, I shrugged when the diner before me offered
17
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Krista Hoffmann-Longtin and Adam Hayden
to assist with assembling my meal. Whether motivated by pity, aid, or efficiency, she smiled with pursed lips and a sideways glance, lifted my plate
from the table, and proceeded down the line. Although “patients included”
is a recent and flashy biomedical conference trend, advances in biomedical
research inclusivity remain passive and permissive rather than active and
enabling.
The facilitator began the closing session by eliciting from the audience,
“the most innovative developments you heard about or saw during the conference.” Augmented virtual reality microscopy was a crowd favorite. Participants continued, “gene editing!” another, “liquid biopsy!” Indeed, next
followed structured “share outs” from prescribed topics to advertise all that
we learned about genomics, biomarkers, and immunotherapies.
I wondered how this might be so: I was attending this conference by
selection for a special scholarship and concomitant designation indicative
of my role as a science-literate patient advocate. Though I knew only those
twenty-five or thirty others, I spoke with directly over the course of several
days, ostensibly the program that evening, mandatory for those attending on
scholarship, comprised a majority audience of others like me: other patients.
Yet not a word was spoken about the bedside. Not a topic for share out. Not
a single line was explicitly drawn between research innovation and patient
experience. A buffet table of scientific expertise and a burden placed on the
consumer to navigate, serving as a barrier to access.
Copyright © 2018. Lexington Books. All rights reserved.
Krista
I read Adam’s narrative, and immediately felt the dialectical tension he
describes. Maybe the conference participants were more excited about the
scientific researchers? Can you fault them? They are researchers, after all. At
the same time, reading Adam’s story puts me in the room. His point is made
more salient by his metaphor—the inaccessible buffet of food and research
findings. Adam was hungry for participation, just as the researchers were
hungry for new discoveries. Reading this story, for me, as a scholar of communication, reminds me of the power of the narrative—how (re)storying the
conversation of Adam’s role at the biomedical research conference brought
to the fore the isolation that patients potentially feel when asked to participate
without an acknowledgment of their ways of knowing (Pearce, 1989).
With the two brief narratives above, we seek to illustrate our entry points
in this topic—as a person living with brain cancer and philosopher of science,
and a teacher and researcher of communication in academic medicine. In this
chapter, we seek to use a mix of our own narratives and literature review to
illumine lessons at the intersection of biomedical research and patient narratives which are, at best, left implicit, and at worst, neglected. Our method is
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From Stories to Discoveries
19
Copyright © 2018. Lexington Books. All rights reserved.
patterned after the theoretical framework we espouse: first, advance a patient
narrative, and second, interrogate its role in biomedical research advocacy.
Biomedical researchers are usually trained to use positivistic approaches
to develop efficacious treatments and pursue cures for illness and disease.
Accordingly, they rarely engage persons living with the disease in the development of research questions and protocols (Caron-Flinterman, Broerse, &
Bunders, 2007; Sacristán et al., 2015). Just as patient narratives can create
therapeutic partnerships in delivery of treatment (DasGupta & Charon, 2004),
they offer value to the research process to emphasize the person with the disease, rather than the disease, in isolation (Greenhalgh, 2009; Panofsky, 2011).
Applying Ellingson’s (2009) approach to qualitative crystallization, we
explore intersections in the literature on patient narratives in advocacy, our
own narratives, and those from biomedical researchers and patients. We seek
to uncover the meaning of involving not only patients, but more specifically
patients’ stories. As Hyden (1997) argues, “Patients’ narratives give voice to
suffering in a way that lies outside the domain of the biomedical voice” (p.
49). We offer strategies to close this gap and identify a role for narrative in
creating an agenda for research in healthcare.
The roadmap for this chapter is as follows. In the first section, we discuss
the extant research on patient involvement and narrative in the context of
biomedical research, and explain our methodological approach. Next, we
investigate the topic of expertise by considering the interplay of experiences
and credibility as each informs the roles ascribed to “patients” and “researchers.” We extend the conversation about experiences to promote narrative as a
tool to introduce a non-positivistic way of knowing that undermines the presupposed objectivity of science. We survey limitations of our piece. Finally,
we offer concluding remarks. It is our aim to consider carefully the role of
narrative, expertise, different ways of knowing in the pursuit of biomedical
research, and ultimately health communication and healing.
PATIENT PARTICIPATION IN
BIOMEDICAL RESEARCH
An investigation of the historical relationship between biomedical researchers and patients is helpful to better understand how patient narratives can
inform the biomedical research process. Over the past forty years, there has
been a shift in discourse from understanding patients as subjects (merely one
of many tools required to conduct biomedical research) to important participants in (and even powerful drivers of) biomedical research. This shift can
be attributed to both scientific and social influences (Caron-Flinterman et al.,
2007; Solomon, 2016). As scientific problems have become more complex
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Krista Hoffmann-Longtin and Adam Hayden
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and connected to social forces (such as social determinants of health), scientists have sought to include more lived experiences of patients in the research
process. Additionally, the public has increasingly demanded the applicability
of scientific discovery to lay people’s and patients’ lives.
Scientists and scholars tend to use two primary arguments for including
patients in the research process (beyond serving as subjects). The first argument is regarding improvement of the science itself. Since patients have
a type of experiential knowledge, their expertise can serve as a foil to the
professional and objective work of scientists, thus creating a more complete
research outcome (Entwistle et al., 1998). Alternatively, Collins and Evans
(2002) contend that partnerships with patients in the biomedical research process enhances the moral and political legitimacy of the research, since they
are ultimately the beneficiaries of this information.
Though recognized in the clinic, “health care can be delivered more effectively and efficiently if patients are full partners in the process” (Holman &
Lorig, 2000, p. 527), the movement to involve more patients in the biomedical research process in the United States is a relatively new phenomenon. In
2003, Zerhouni, a former director of the National Institutes of Health (NIH),
argued for a shift in clinical research to include more patients, specifically via
community-based physicians and organizations. While no mention of patient
narrative is present, the author clearly advocates for privileging patient voices
in the research process, mentioning “new models of cooperation between
NIH and patient advocacy alliances” (p. 64). However, bridging the gap
between patients and researchers is a hard-won process. Reporting for Nature
News five years later, Butler (2008) questioned what the NIH had done to
encourage the values they espoused. He explained,
Over the past 30 or so years, the ecosystems of basic and clinical research have
diverged. The pharmaceutical industry, which for many years was expected to
carry discoveries across the divide, is now hard pushed to do so. The abyss left
behind is sometimes labelled the “valley of death”—and neither basic researchers, busy with discoveries, nor physicians, busy with patients, are keen to venture there. (p. 841)
As illustrated by this report, simply giving a mandate for scientists, clinicians, and patients to communicate more effectively and creating “networks”
(Zerouni, 2003) were not enough to bridge the gap between these communities. With this example, it is important to note that disciplinary boundaries
often shape the way that scholars understand a phenomenon. In the case of
Zerouni’s (2003) mandate and Butler’s (2008) critique, these perspectives
are legitimized in the biomedical research community, in part because of
their affiliation with the NIH and the journal Nature. Despite Butler’s (2008)
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From Stories to Discoveries
21
critique, some scholars contend that biomedical researchers and patients have
seen some successful partnerships.
Caron-Flinterman and colleagues (2007) classified three categories of
patient participation in biomedical research. They include (1) the lobbying of patient organizations, (2) ad hoc use of patients’ ideas and demands
through intermediaries, and (3) inclusion of patient representatives in existing
decision-making groups (as described in Adam’s story above). Although their
study was conducted in the Netherlands, Caron-Flinterman et al. (2007) argue
that their literature searches and participants give a “reasonable impression”
of the landscape globally (p. 347). Wehling et al. (2015) also address issues
of typology, arguing that, although classification holds value, the level of
diversity in disciplines and approaches may limit social scientists’ abilities to
define the experiences of researchers’ and patients’ partnerships.
More recent work by Kaye and colleagues (2012) acknowledges that
current biomedical research models fail to adequately include the perspectives of patients and research participants. The authors propose that new
technology can facilitate participant-centered initiatives (PCIs), defined
as “tools, programs and projects that empower participants to engage
in the research process using IT” (p. 4). They further argue that using
PCIs through technology, such as patients sharing of data in social media
and apps, can encourage ongoing interactions between participants and
researchers. As Kaye et al. explain, this approach “can result in research
that demonstrates high standards of research integrity but also an involvement by patients and participants that is more active and richer than more
conventional approaches” (p. 5).
Imbedded in the models described above is a dialogic space between
patients and biomedical researchers, where, in some cases, patient narratives are shared directly to the researchers and, in other cases, are shared via
an intermediary (i.e., a researcher or physician sharing a patient’s story on
behalf of the patient, or more recently, an app sharing data with a researcher
in which the researcher constructs the story of a patient’s illness via the data
received). In any case, narrative is at the center of the interaction. It is the
primary tool patients must engage with biomedical researchers. However, as
illustrated by Wehling et al. (2015), patients, researchers, and physicians each
approach their interactions with illness and the storying of illness quite differently. One specific area where these epistemological differences manifest
is in the context of objectivity. Writes Murphy et al. (2016), “the reality of
patients is never directly encountered by a clinician, or anyone else, but is
revealed gradually through the stories they tell” (p. 103). Murphy and colleagues (2016) remind us, “accumulating information about a patient is thus
a hermeneutic exercise” (p. 103).
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Krista Hoffmann-Longtin and Adam Hayden
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The Problem with Objectivity
Biomedical researchers, even more so than physicians, are trained to privilege
the perspective of objectivity. Randomized controlled trials are the so-called
gold standard of biomedical research, where the goal is to eliminate bias and
control for as many variables as possible. When it is impossible to control for
a variable, researchers treat this as a limitation of their work, caveating and
listing these at the end of their studies. Conversely, most physicians acknowledge that the practice of medicine is both a science and an art (Charon, 2006;
Greenhalgh, 1999; Solomon, 2016). Although many clinicians work within
the paradigm of evidence-based medicine, Solomon (2016) notes that this
term, itself, is political and subjective in nature. At best, the term can give
epidemiologic data about a disease, but fails to offer much solace to patients
who do not fit into the standard narrative of a particular disease. Narrative
researchers move even further away from the objective paradigm. As Chase
(2003) explains, “[narrative] researchers develop meaning out of, and some
sense of order in, the material they studied; they develop their own voice(s)
as they construct others’ voices and realities” (p. 657). The dialectic tension
between objective and subjective are inherent in Japp and Japp’s (2005)
investigation of the narratives of biologically invisible diseases. As they
explain, “the pervasive hegemony of the biomedical model of disease limits
the stories patients tell as much as it does physician’s practices” (p. 122).
It is expected that these tensions may introduce significant worries for
biomedical researchers for whom empirical evidence is the purported norm
by which science progresses, and it is only through these evidence-based
methods that a proper objectivity toward a subject or domain of investigation
is maintained. Though, the philosophy of science has long advanced the position that all observation is theory-laden (Hanson, 1958). More plainly, any
observation or experimental design is selected with theory in mind. Theory
selection itself is a social act. Philosophers of science Bertolaso and Sterpetti
(2017) remind readers of the epistemic subjectivity of theory selection, favoring plausibility accounts replete with subjectivity rather than probabilistic
accounts. When available evidence fails to adjudicate between rival theories,
researchers employ so-called theoretical virtues to advance the preferred
theory. Peter Lipton (2003) develops a robust account of theoretical virtues
and their role in identifying scientific theories which are the most likely to be
at least approximately true.
Thus, the lines distinguishing subjectivity from objectivity in research are
blurred, and clinging to the notion of purely objective science is unhelpful,
particularly for patients and clinicians who experience the messiness of disease daily. Patient narratives should not be rejected out of hand for fear of
their socially constructed nature. To move beyond the question of legitimacy
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From Stories to Discoveries
23
of patient narrative in the understanding of biomedical research, it is useful
to delve into the notion and definition of expertise.
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Who Is an Expert?
When considering the role of patients and patient narratives in biomedical
research, expertise becomes a significant area of contention. In the traditional
biomedical model of medicine (as embodied by most biomedical researchers), patient experience is often defined as “lay knowledge,” implying that
it is epistemologically inferior to the expertise of researchers (Wehling,
Viehover, & Koenen, 2015). This perspective is situated in the larger grand
narrative of the biomedical model (Epstein, 1995; Japp & Japp, 2005; Morris,
1998), where the primary actor is the researcher using science and technology to discover and cure the patient. In this context, patients are objects of
study upon which science is acted, rather than participants or cocreators of
the outcome.
We suggest this model is mistaken on two accounts. First, the transactional
model of care seeks to cure, assuming an acute intervention, which is poorly
suited for the management of chronic illness (Carel, 2008; Holman & Lorig,
2000). Second, viewing patients as end users, or more crudely, “consumers”
and “customers,” fails to notice that clinicians, for their part, are similarly
caught up in the biomedical model, treating patients in the clinic or at the
bedside as mere “providers” (Montori, 2017, p. 79ff.) This model leaves little
space for inclusion of the patient narrative. Clinician narratives further punctuate the loss of autonomy experienced by both “providers” and “consumers”
of health care.
When patients have engaged with biomedical researchers, the language of
biomedicine is privileged. Epstein’s (1995) participants in the AIDS treatment movement described this as learning a foreign language. His participants noted that, once they had access to the language of biomedicine, they
could access and influence the institutions. In other words, “Once they could
converse comfortably about viral assays and reverse transcription and cytokine regulation and epitope mapping, activists increasingly discovered that
researchers felt compelled, by their own norms of discourse and behavior, to
consider activist arguments on their merits” (Epstein, 1995, p. 419). As Wehling and colleagues (2015) explain, it is in this space where the definition of
expertise becomes most murky. The authors state, “to what extent and in what
circumstances is patients’ knowledge complementary to and instrumental for
scientific knowledge production, and how far is it opposed to it, contesting its
background assumptions and conceptual approaches and transforming the latter?” (p. 5). Shapin (1990) notes that the constitution of the expert/lay divide
is defined by the question of who possesses cultural competence; thus, asking
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24
Krista Hoffmann-Longtin and Adam Hayden
researchers to posit what a space for productive exchange of experience and
ideas between biomedical researchers and patients might look like.
As mentioned earlier, Japp and Japp’s (2005) discussion of legitimacy of
patients’ experiences offer a grim description of the current space for conversation. Because patient narratives are told within the social and political context
of the grand narrative of biomedicine, patients are simultaneously constrained
and enabled when telling their stories. Technical rationality is privileged,
leaving patients who do not fit into the traditional narrative often feeling lost
and delegitimized. In this postmodern perspective, counternarratives emerge
from patients who question the dichotomy between illness and cured, seeking
a space of demedicalization of their experiences (Harter, Japp, & Beck, 2005).
Pearce’s work (1989) on coordinated management of meaning is potentially
helpful here, to both biomedical researchers and patients, to explain how these
tensions have been created. As the author contends, each communicative community holds its own set of resources and practices that are often not easily
accessible to those outside the group. When this happens, conflict emerges and
conversation can often devolve. As Pearce (1989) explains,
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In speaking to those who logics of meaning and action are similar to their
own, persons use a sophisticated vocabulary, acknowledge the dignity and
honor of those who disagree with them, and usually are able to put together
well-coordinated episodes. However, when speaking to someone from another
group, the form of discourse attenuates quickly. A simplified vocabulary is used;
the personalities and motives of the other are posed in a desiccated vocabulary
of human purposes; taunts and condemnations replace argument and evidence;
and one’s own reasoning and life experiences are protected from exposure and
anticipated criticism. (pp. 43–44)
Because one communicative community’s (biomedical researchers)
resources and practices have been traditionally privileged, it is no surprise
that the narratives of another community (patients) have been generally seen
as unhelpful. Conversational actors constantly co-construct the meaning
of communication as they communicate, and as such, particular roles have
been reified. For biomedical researchers, it is the role of expert, as defined
above. In the case of patients, the sick role has emerged as another dominant
narrative.
NARRATIVE ENGAGEMENT CONTINUED
Following the July 2017 brain cancer diagnosis of American high-profile
political figure Senator John McCain, public awareness spread concerning
the aggressive and deadly cancer, glioblastoma, usually abbreviated as its
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From Stories to Discoveries
25
medical moniker “GBM.” This devastating disease corners patients with no
available curative treatment, left to confront a limited life expectancy and
generally poor quality of life. Living with GBM requires patients to endure
side effects from cytotoxic cancer therapeutics and neurological disorders
stemming from tumor invasion and neurosurgical removal of the primary
brain tumor—the first step in the standard of care protocol.
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Adam
I received a GBM diagnosis in June 2016, one year prior to Mr. McCain’s.
For this reason, beyond the sympathetic reaction shared by many, I paid close
attention to media coverage surrounding the health communication tactics
and information dissemination of this rare and difficult to understand disease.
That month was especially hot. My family vacationed with close friends near
a lake in Southern Indiana, a day’s trip from our home. Seeking refuge from
the heat and taking active steps to manage my seizures, I chose not to join
in a planned trip to a nearby amusement park. I spent much of the morning
comfortably in a rocking chair set on the shaded porch of our rented cabin,
reading. I decided to retreat inside to lie down when I heard the familiar tone
of a smartphone notification. News broke of Mr. McCain’s diagnosis. Several
friends and acquaintances reached out to notify me.
Carel (2008), a philosophy scholar living with a chronic illness, provides
an extensive phenomenological account of the illness. The author contrasts
the philosophical treatment of the illness experience as a foil to the “naturalistic” model of illness and disease paradigmatic of the biomedical research
community. Carel (2008) situates illness in a social context, describing illness
as problematic in at least two ways. First, illness punctuates the ill person’s
inability to control how others view them, and second, all social interactions
are placed in the shadow cast by illness. On Carel’s view, it is not surprising
that associations between McCain’s diagnosis and my illness immediately
presented themselves to others, prompting outreach. As I wrote in an open
letter to McCain (Hayden, 2017), there is little McCain and I share in social
position or common interest, yet each is now connected by a specific disease.
That connection in isolation is connection enough to reshape my social position as a peer of McCain’s, a position unlikely to emerge without the social
implications of becoming ill. Indeed, Carel evokes Parsons’s (1951) account
of this feature of illness: the sick role.
In a sociological rather than philosophical context, Parsons (1951) emphasized features of disease (later echoed by Carel (2008). Parsons contrasts
biological processes of illness from sociological considerations. His novel
construction of illness described the “sick role” as a “deviant role,” that is,
failing in some way to fulfill the institutionally defined expectations of one
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Krista Hoffmann-Longtin and Adam Hayden
or more of the roles in which the individual is implicated in the society” (p.
452). In my letter to McCain, I contrast his age, storied persona as Vietnam
prisoner of war, and notable history serving in the American Senate, with
my youth, young fatherhood, and nonpolitical background. McCain and I
are deviant in our illness; we share a sick role, in so far as we are each rendered weak and vulnerable by disease, failing our implicated societal roles.
McCain fails his implicated role as battle-tested, strong, and courageous
political leader. I fail my implicated role, as a young person, nearly fifty years
McCain’s junior, expressing the vitality as a father with very young children.
Copyright © 2018. Lexington Books. All rights reserved.
Krista
I remember reading Adam’s letter to Senator McCain when it came out. As a
publication venue, STAT is a “big get” for those of us in the communicating science and health world. I was proud to say I knew him. How sad is that? That I
was proud to have a friend doing such amazing and high-profile work, because
of a terrible diagnosis. In reading this again, I can see how I fall into these patterns. Communicatively, I work hard to identify Adam as a scholar and philosopher first, a “sick person” second. I often wonder if this matters discursively.
Since we travel in many of the same circles, I worry (maybe I shouldn’t?) about
Adam being known as “the guy with the brain tumor,” essentializing his identity
into his diagnosis. Largely speaking, this is always a concern of mine for anyone
living outside the dominant narrative. How do we honor these stories without
constantly othering? And how, as an educator of current and future biomedical
researchers, do I teach people how to do (or not do) this?
Parsons (1951) and Carel (2008) each distinguish two paradigms of illness: one, naturalistic (positivistic, reductionist, or biological), and the other,
sociological or phenomenological. Features of the illness experience fail
to be captured by a purely empiricist account of disease. The issue, then,
expressed recently by Wehling and colleagues (2015) is to define how best
to relate patient knowledge—the “sick role,” or phenomenological—to scientific knowledge—positivistic. In violating these sick roles, both McCain
and Hayden create a counter-story to the master narrative of the biomedical
construction of illness, identifying them as whole people who, alongside their
identity within the GBM community, still assert their identities as fathers
and professionals (Japp & Japp, 2005). This introduction of additional lenses
moves the reader to see the storyteller as more than just a “sick person.”
With these perspectives in mind, we offer narrative as a strategic tool
to move biomedical researchers away from the biomedical construction of
illness, viewing patient narratives as both a tool to inform research and an
epistemological lens to understand the diseases they study in a new way. If
we understand illness as codified through discourse, even in the context of
Narrating Patienthood : Engaging Diverse Voices on Health, Communication, and the Patient Experience, Lexington Books, 2018.
ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/uncg/detail.action?docID=5606445.
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From Stories to Discoveries
27
biomedical research, introducing the illness experience into the research community could change the research questions.
REIMAGINING THE ROLE OF
NARRATIVE AND STORYTELLING
Scholars of health communication, sociology, medicine, public health, and
other disciplines have considered the role of patient narratives as a tool for
conducting or informing research. Some (such as Borkan, Quirk, & Sullivan,
1991) use the gathering of patient narratives as a research methodology or
narrative inquiry (Chase, 2003) to consider the relationship between patient
perceptions and health outcomes. Psychiatrist and narrative theorist Adler
(2012) notes a critical role for narrative as tool for patient agency, or in
Adler’s words, “autonomy, achievement, mastery, and ability to influence
the course of his or her life” (p. 368). As this volume and other researchers
(Charon, 2006; Epstein, 1993; Harter, Japp, & Beck, 2005; Wehling et al.,
2015) extol, narrative is a critical tool in redefining the roles of patients and
those who treat them.
However, many of these scholars acknowledge that narratives do not
exist only in the context of the interpersonal relationship between the storyteller and the listener (physician, biomedical researcher, or otherwise). For
example, Japp, Harter, and Beck (2005) examine the role of narrative in constructing and co-constructing the ontological meaning of health and disease.
As they explain,
Copyright © 2018. Lexington Books. All rights reserved.
Personal narratives become the building blocks of public knowledge. More and
more, mediated and public dialogue, from legislative testimony to newscasts to
public health promoti…