copyright by claudia calle beal...the dean of baylor university, louise herrington school of nursing...
TRANSCRIPT
Copyright
by
Claudia Calle Beal
2010
The Dissertation Committee for Claudia Calle Beal certifies that this is the approved version of the following dissertation
WOMENrsquoS EARLY SYMPTOM EXPERIENCE OF STROKE
A NARRATIVE STUDY
Committee
____________________________________________ Alexa Stuifbergen Supervisor ____________________________________________ Heather Becker ____________________________________________ Tracie Harrison ____________________________________________ James Pennebaker ____________________________________________
Deborah Volker
Womenrsquos Early Symptom Experience of Stroke
A Narrative Study
by
Claudia Calle Beal BSN MN
Dissertation
Presented to the Faculty of the Graduate School of
The University of Texas at Austin
in Partial Fulfillment
s of the Requirement
for the Degree of
Doctor of Philosophy
The University of Texas at Austin
May 2010
Dedication
This dissertation is dedic Ron and our son Nate
ated to my husband They are my heroes
Acknowledgements An African proverb tells us that it takes a village to raise a child The same
might be said for attaining the doctor of philosophy degree I would like to
acknowledge some of the individuals who helped me reached this day
I would first like to acknowledge three women who started me on the path
to doctoral study About a decade ago I took a course in the philosophy department
at Baylor University with Dr Kay Toombs during which her phenomenological
investigations into the experience of illness stimulated me to think about illness
and nursing in new ways It was as a direct result of my classes with Dr Toombs
that I developed and received approval from Dr Phyllis Karns who at the time was
the dean of Baylor University Louise Herrington School of Nursing (LHSON) for a
pre‐nursing seminar entitled The Experience of Illness In this course I drew upon
the work of Dr Toombs to encourage my students to think about illness from a
phenomenological perspective After Dean Karns retired the new dean of the
LHSON Dr Judy Lott asked why I wasnrsquot pursuing a doctoral degree When I
responded that I was too old to start a doctoral program Dean Lott asked how old
I would be on the day I would have graduated if I did not pursue the degree
Shortly thereafter I began my studies at The University of Texas at Austin School
of Nursing
I would like to express my appreciation to the faculty at The University of
Texas at Austin I am especially grateful to the members of my dissertation
v
committee From each of these individuals I learned something valuable that I have
carried with me as I progressed though the doctoral program The class I took with
Dr James Pennebaker was undoubtedly among the most intellectually stimulating
and challenging course I took at UT His impressive intellect and method of
teaching stretched me to think in new ways and about new things and his wit
made our interactions memorable I could always count on Dr Heather Becker to
help me separate ldquothe wheat from chaffrdquo in my thinking during our collaborations
on research projects and manuscripts and I am glad she agreed to be on my
committee to continue in this role During every interaction I have had with Dr
Tracie Harrison she has asked a question that challenged me to critically think
about how I approached some aspect of the research process or reached a
particular conclusion in my thinking It was from Dr Harrison that I first learned
how to think and write like a nurse‐researcher Dr Deborah Volker was my
instructor for several qualitative research courses and I greatly benefited from her
wisdom and the respect with which each of my questions or viewpoints was met
Dr Volker also served as the methods person on my dissertation committee and I
am gra teful to her for her guidance during the process of analyzing my data
Words are inadequate to express my appreciation to my advisor and
dissertation committee chairperson Dr Alexa Stuifbergen I am privileged to be
among the students who have been mentored by this hardworking and dedicated
individual She shared with us her time expertise and research data I think of the
vi
many students whose fledging research and teaching careers she hatched and the
work that otherwise would not have been done without her early guidance and
support I attribute whatever success I have had as a doctoral student and will
have as a researcher to Dr Stuifbergen
I also would like to express my gratitude to the participants in my
dissertation study who allowed me into their lives and took the time to tell me
their stories of stroke These women often expressed their desire to be of
assistance to other women who someday will have a stroke It is my hope that
though the publication of the findings from this study and the future research I
plan on this topic that their hopes will become reality
And finally I thank my husband Ron Beal for recognizing long before I did
that I was capable of doing this His confidence in me never wavered His constant
encouragement and advice to me during my doctoral studies was to focus on the
task at hand and that the larger goal would be achieved He as always was right
vii
WOMENrsquoS EARLY SYMPTOM EXPERIENCE OF STROKE
A NARRATIVE STUDY
Claudia Calle Beal PhD
The U 010
niversity of Texas at Austin 2
Supervisor Alexa Stuifbergen
viii
The purpose of this study was to gain understanding of the early symptom
experience of ischemic stroke in women This is the only study of which the
researcher is aware in which narrative inquiry was used to examine the period of
time from symptom onset until emergency department arrival in women Data
collection was achieved by in‐depth interviews during which participantsrsquo stories
of stroke were elicited Individual narrative accounts were created and analyzed
using within and across case techniques The participants were nine women
ranging in age from 24‐86 years (average age 53) Four participants were
Caucasian three were Hispanic one was African American and one woman was of
mixed race The participants experienced the onset of stroke as the inability to
carry out accustomed activities in usual ways There was a tendency to objectify
the body Only two participants considered stroke as a possible cause for their
symptoms and the other women attributed symptoms everyday bodily
experiences andor other health conditions Most participants did not perceive
themselves at risk for stroke although all but one woman had risk factors The
participants displayed a variety of responses to symptoms including trying to
continue with usual activities and seeking help as well as deciding not to tell
anyone about their symptoms Symptom response was related to womenrsquos
evaluation of and emotional response to symptoms The actions taken by the
participants in response to symptoms were informed by the meaning of the
symptoms and meaning was formed within the context of each womanrsquos life
situation Few women made the decision to seek medical care on their own and in
every case family members or co‐workers were reported to take an active role in
getting the participant to the hospital Some family members were reported to
consult with one another before making the decision to call EMS or transporting
the participant to the emergency department Consistent with what was expected
from extant research the majority of the participants did not arrive at the hospital
in time to be offered treatment with t‐PA Recommendations for future research
stroke education and practice were discussed
ix
Table of Contents
xList of Tables ii
Chapte
r One Introduction 1
Study Purpose 3
Definitions 4
Background 6
Conceptual Orientation 11
Assumptions 20
Acknowledging Bias 21
Significance to Nursing 22
Summary of Chapter One 24
Chapte
r Two Review of the Literature 25
Overvie
w of Stroke in Women 25
Summary 28
Sympto o
ms of Str ke 29
Summary 36
Theore
tical Perspectives on Symptom Experience 37
Summary 43
Phenom
enological Perspective on Symptom Experience 43
Summary 47
Qualitative Literature Early Symptom Experience of Stroke 47
x
Summary 53
Studies
on Hospital Arrival Time 54
Summary 64
Summary of Chapter Two 65
Chapte
r 3 Methodology 66
Philosophy 66
Method
s 70
Particip
ant Selection Strategies 70
Sample Selection 70
Sample Size 72
Sample Characteristics 78
Recruitment 78
Human Subjects 80
Data M
anagement 82
Data Collection 82
Data Handing 86
Data An
alysis 87
Within Case Analysis 87
Across Case Analysis 95
Bias Reduction 97
Trustworthiness 98
xi
Limitations of the Study 101
Summary of Chapter Three 134
Chapte
r 4 Within Case Analysis 104
Teresa 105
Maria 114
Tiffany 125
Lisa 135
Kenzie 144
Ellen 155
Louise 164
Natalie 170
Jane 185
Summary of Within Case Analysis 191
Chapte
r 5 Across Case Analysis 192
Sympto
m Perception 192
Sympto
ms as both Familiar and Strange 193
Symptoms as Familiar 193
The Strange Body 196
The Ina
bility lsquoTo Dorsquo 199
Heightened Awareness of Body 200
Alterations in Lived Spatiality 202
xii
Losing Body‐Sense 203
Changes in Cognitive functioning 205
Sympto
ms Evaluation 206
The Sea
rch for the Cause of Symptoms 206
Memories of Illness 208
Preexisting Ideas about Health Conditions 209
Familiar Bodily Sensations 212
Perceptions of Symptom Seriousness 213 Making Sense of Prodromal Symptoms 216
Perceptions of Stroke Risk 218
What lsquoSickrsquo Means 220
Sympto
m Response 222
Self‐Body Talk 222
Emotional Response 224
Behavi
oral Response 227
Symptom Evaluation and Behavioral Response 227 Emotional Response and Behavioral Response 230 Context of Symptom Response 231
Role of Other People 235
Summary of Across Case Analysis 238
Chapter 6 Summary Conclusions and Recommendations
245
xiii
Summary 245
Discussion 249
Recom
mendations 256
Recommendations for Future Research 256
Recommendations for Stroke Education 259
Recommendations for Health Professionals 260
Conclusion 263
Append
ix A Review Board Materials 265
Institutional Review Board Approval 266
Recruitment Flier 269
Media Advertisement 270
Letter to Potential Participants 271
Reply Card 272
273 Phone Script uthorization for the Use and Disclosure of Protected A
Health Information Form 274 Letter to Physicians 276
Informed Consent to Participate in Research 277
Appendix B Data Collection Materials 280
Background Information Form 281 Interview Schedule 285
References 286
xiv
Vita 309
xv
xvi
List of Tables
Table 1 Arterial Territories and Stroke Syndromes 32 Table 2 Gender and Stroke Symptoms Studies 36 Table 3 Studies of Factors Associated with Arrival Time 61 Table 4 Selected Sample Characteristics 77 Table 5 Sample Symptoms and Arrival Times 78
able 6 Summary of Findings from Across Case Analysis 237 T
Chapter One Introduction
Five million people worldwide die each year from stroke (World Health
Organization (WHO) 2006) and it is the third leading cause of death in the United
States (Rosamond et al 2008) Ischemic stroke accounts for 87 of the estimated
700000 new or recurrent strokes occurring annually in the U S (National Heart
Lung and Blood Institute 2006) Stroke is an important cause of long term
functional limitations and disability (Rosamond et al 2008) and women have
poorer functional status after stroke than men (DiCarlo et al 2003) Women
account for 61 of all stroke deaths and 87 of those deaths are due to ischemic
stroke (Ayala et al 2002)
The only therapy approved by the US Food and Drug Administration to
reduce the functional limitations associated with ischemic stroke is the
thrombolytic agent recombinant tissue plasiminogen activator (t‐PA) (Adams
2007) Many people who may benefit from t‐PA do not have the opportunity to
consider this form of treatment which must be given intravenously within 45
hours of stroke onset (del Zoppo Saver Jauch amp Adams 2009) due to delays
reaching the hospital (Arora et al 2005 Deng et al 2006 Gargano Wehner amp
Reeves 2008 Hills amp Claiborne 2006) Alexandrov (2007) characterized delay as
ldquoa plague of unparalleled proportionsrdquo (p 7) in an editorial in the journal Stroke
The tendency to delay seeking care may be especially relevant to stroke outcomes
in women as there is evidence that women derive greater benefit from t‐PA than
1
men (Kent Price Ringleb Hill amp Selker 2005)
A substantial amount of research has investigated variables associated with
time of arrival at the emergency department after the onset of stroke symptoms
(Jorgensen Nakayama Reith Raaschou amp Olsen 1996 Lacy Suh Bueno amp Kostis
2001 Smith et al 1998 Yu San Jose Manzanilla Oris amp Gan 2002) These
studies primarily examined the association between arrival time and
demographic and clinical factors Fewer studies have been conducted to examine
cognitive perceptual emotional and social factors associated with arrival time
(Mandelzweig Goldbourt Boyko amp Tanne 2006) or bodily experiences during
the acute phase of stroke (Faircloth Boylstein Rittman amp Gubrium 2005) There
also are no published studies of which the researcher is aware in which womenrsquos
experiences during the period of time between symptom onset and arrival at the
emergency department (ED) were examined in depth Thus our understanding of
womenrsquos early symptom experience of stroke is incomplete
There is evidence in the literature that compared with men women with
acute myocardial infarction (AMI) report a different pattern of symptoms (Chen
Woods Wilkie amp Puntillo 2005 Culic Eterovic Miric amp Silic 2002 Everts
Wahrborg Hedner amp Herlitz 1996 Goldberg et al 2000 Milner Vaccarino
Arnold Funk amp Goldberg 2004 McSweeney et al 2003) and may wait longer to
obtain medical assistance (Meischle Larsen amp Eisenberg 1998) Although less
extensive than the AMI research the stroke literature is suggestive of a similar
2
pattern with some researchers reporting a longer time from symptom onset to
hospital arrival for women than men (Barr McKinley OrsquoBrien amp Herkes 2006
Lisabeth Brown Hughes Majersik amp Morgenstern 2009 Mandelzweig et al
2006) and some though not conclusive evidence of gender differences in
symptom presentation (Labiche Chan Saldin amp Morgenstern 2002 Lisabeth et
al 2009) Due to a paucity of research on the symptom experience of stroke in
women our understanding of these findings is limited In light of womenrsquos poorer
functional outcomes after stroke and the fact that they may derive greater benefit
from t‐PA than men more research on the early symptom experience of stoke in
women is warranted (Lisabeth Brown amp Morgenstern 2006)
Study Purpose
The purpose of this study was to gain understanding of the early symptom
experience of ischemic stroke in women Narrative inquiry was the methodology
that guided this qualitative investigation It was the specific aim of the researcher
to create individual narrative accounts of the time from when a woman first
noticed her symptoms until she arrived at the emergency department and to
explore similarities and differences these accounts Women who identified
themselves as of various races and ethnicities were included in the sample to gain
the perspective of women from different backgrounds Two research questions
were addressed
1 How do women experience their bodies from the time of symptom
3
onset until arrival at the emergency department
2 What are womenrsquos thoughts feelings behaviors and interpersonal
interactions from the time of symptom onset until arrival at the
emergency department
Definitions
An ischemic stroke occurs when a blood vessel that supplies blood to the
brain is blocked by a blood clot or atherosclerotic plaque If blood flow is
stopped for longer than a few seconds the brain is deprived of blood and
oxygen and brain cells die (httpwwwnlmnihgovmedlineplushtm
Symptoms are subjective experiences reflecting changes in a personrsquos
biopsychosocial functioning sensations or cognitions (Dodd et al 2001)
Signs are outward manifestations of disease visible to other people
Ischemic stroke may present with signs andor symptoms For the sake of
)
brevity the term symptom will be used throughout this manuscript
Symptom experience includes an individualrsquos perception of a symptom
evaluation of the meaning of a symptom and response to a symptom
Perception refers to awareness of a change in biopsychosocial functioning
sensations or cognitions evaluation is an opinion about the severity
cause treatment and effect of symptoms on a personrsquos life responses to
symptoms may be physiological psychological sociocultural and
behavioral (Dodd et al 2001)
4
Acute symptoms were defined as the report of symptoms occurring within
24 hours of hospital admission
Prodromal symptoms were defined as the report of symptoms occurring
prior to 24 hours of hospital admission (Stuart‐Shore Wellenius
DelloIacono amp Mittleman 2009)
Symptom onset is the time when the participant or a witness first noticed
symptoms
Early symptom experience was defined as the time from symptom onset
until arrival at the emergency department It includes both prodromal and
acute symptoms
A narrative is composed of a unique sequence of events mental states and
happenings involving human beings as characters or actors (Bruner
1990) A narrative is also called a story
Narrative inquiry is a type of qualitative research in which a researcher
collects stories of life events to produce a reconstruction of a personrsquos
experience (Clandinin amp Connelly 2000)
The term gender was used in this study to refer to the social psychological
and cultural dimensions of an individualrsquos experience of their biological sex
(Verbrugge 1985)
The term functional limitation refers to ldquorestrictions in performing
fundamental physical and mental activities used in daily life by onersquos own
5
age‐sex grouprdquo (Verbrugge amp Jette 1994 p 3)
Disability was defined as difficulty performing activities in any domain of
life due to a health or physical problem (Verbrugge amp Jette 1994 p 4)
Background
Dating to the 15 century the disorder we now refer to as stroke was
called apoplexy
th
derived from the Greek word apoplēxia from apoplēssein the
meaning of which is to cripple by a stroke (Websterrsquos Third New International
Dictionary 2002) Stroke is defined as ldquoa focal (or at times global) neurological
impairment of sudden onset and lasting more than 24 hours (or leading to death)
and of presumed vascular originrdquo (WHO 2006) There are two main types of
stroke hemorrhagic and ischemic the latter of which is the more common
Ischemic stroke occurs when an artery in the cerebral circulation is occluded
by one of several mechanisms atherosclerotic plaque thrombus or embolus
(Whisnant et al 1990) Occlusion of an artery reduces blood flow to surrounding
tissue (ischemia) and infarction (tissue injury) may result after only a few minutes
of ischemia Infarction and cell death occur through a complex series of metabolic
processes called ischemic cascade in which glucose and oxygen deprivation causes
acidosis depolarization of the cell membrane and disturbances in intracellular
calcium and sodium in brain cells (Durukan amp Tatsumaka 2007 Siejo 1992a
Siejo 1992b Smith 2004) If blood flow to the ischemic area is not restored within
6
a relatively short period of time cell death occurs Approximately 2 million
neuro 6) ns (brain cells) die every minute after ischemic stroke onset (Saver 200
An area of tissue around the main site of infarction called the ischemic
penumbra undergoes a lesser degree of ischemia due to collateral circulation Cell
death in the penumbra occurs less rapidly than in the ischemic core (Smith
2004) Penumbral cells remain viable for several hours and may be salvaged if
blood flow is restored either through spontaneous recanalization or thrombolytic
therapy T‐PA restores blood flow by cleaving the enzyme precursor plasminogen
into plasmin which dissolves the insoluble protein component of the blood clot
blocking the artery (Ouriel 2004)
The National Institute of Neurological Disorders and Stroke rt‐PA Stroke
Study Group (1995) reported that persons who received t‐PA within three hours
after ischemic stroke onset were about one‐third more likely to have minimal or
no neurological deficits and functional limitations three months after stroke
compared with persons who received placebo Subsequent analyses
demonstrated ldquothe earlier the betterrdquo and persons receiving t‐PA within 90
minutes of symptom onset had fewer neurological deficits and functional
limitations at three months compared with persons who received t‐PA ninety
minutes to three hours after symptom onset (Marler et al 2000) The results of a
more recent analysis were indicative that t‐PA administered between 3 and 45
hours after symptom onset was associated with ldquomodest but significant
7
improvement in clinical outcomesrdquo (Hacke et al 2008 p 1327) The guidelines
for t‐PA administration were recently revised to expand the time limit for t‐PA
administration to 45 hours after symptom onset (del Zoppo Saver Jauch amp
Adams 2009)
Despite the positive results associated with t‐PA numerous researchers
have documented that a minority of persons with ischemic stroke receive this
treatment In a 98‐site four state study between three and eight percent of
persons admitted to emergency departments with a diagnosis of ischemic stroke
received t‐PA (Arora et al 2005) Other multi‐site studies had rates ranging from
16 to 273 (Deng et al 2006 Gillium amp Johnston 2001 Katzan et al 2004
Reed et al 2001)
There is evidence of a sex difference in t‐PA administration advantaging
men The results of a recent meta‐analysis were indicative that women had 30
lower odds of receiving tissue plasminogen activator (t‐PA) compared with men
(Reeves Bhatt Jajou Brown amp Lisabeth 2009) Several reasons are suggested for
this disparity Older individuals are less likely to receive t‐PA than younger
persons (Hills amp Johnston 2006 Reed et al 2001) and women on average are
older at the time of stroke than men (Gargano et al 2008) Women may have
more co‐existing medical conditions that make them ineligible for t‐PA or that
may contribute to physician reluctance to administer the therapy (DiCarlo et al
2003 Kothari et al 1999) Additionally it could be that women are more likely
8
than men to report non‐traditional stroke symptoms which may delay diagnosis
(Labiche et al 2002)
The lower incidence of t‐PA administration in women is of concern because
there is evidence that women may derive greater benefit from t‐PA than men
Compared with men who received a placebo in the NINDS and two other trials
women in the placebo groups had significantly poorer functional outcomes at
ninety days (Kent et al 2005) These authors posited that there may be as yet
unexplained sex differences in the brain related to ischemia and reperfusion that
account for womenrsquos more favorable response to t‐PA (Kent et al 2005)
The primary reason for low t‐PA use is that the majority of persons with
ischemic stroke do not arrive at the emergency department in time to have the
option of this treatment (Evenson Rosamond amp Morris 2001 Deng et al 2006)
Prior to receiving t‐PA individuals must have a clinical assessment laboratory
tests and brain imaging studies to determine their eligibility for t‐PA (Adams et
al 2007) Persons arriving at the emergency department between 2 and 3 hours
after symptom onset were 33 times less likely to receive t‐PA compared with
patients who arrived within one hour of symptom onset likely reflecting the time
required for medical evaluation (Deng et al 2006)
Delay seeking medical assistance for stroke is well documented and found
throughout the world (Agyeman et al 2006 Arora et al 2005 Chang Tseng amp
Tan 2004 Katzan et al 2004 Kimura Kazui Minematsu amp Yamaguchi 2004
9
Mandelzweig et al 2006 Pandian et al 2006) A recent analysis by the Centers
for Disease Control and Prevention (CDC) found that fewer than half (42) of
7901 stroke patients arrived at the emergency department within two hours of
symptom onset (CDC 2007a) Delays more than 24 hours were not uncommon
(Casetta et al 1999 Kimora et al 2004 Zerwic et al 2007)
Educational campaigns to increase public awareness of stroke symptoms
have been ongoing since t‐PA was approved by the FDA in 1995 There is evidence
that knowledge of stroke symptoms has increased at the population level since
that time (Fogle et al 2008 Hodgson Lindsay amp Rubini 2007 Marx Nedelmann
Haertle Dieterich amp Eicke 2008) That greater public knowledge of stroke has
not resulted in earlier arrival at the hospital after symptom onset is not surprising
in light of an extensive body of empirical and theoretical research delineating the
complexity and individuality of symptom experience (Bishop 1991 Leventhal
Meyer amp Nerenz 1980 Pennebaker 1982) This work is indicative that the way
individuals perceive evaluate and respond to physical symptoms is influenced by
social context (Mechanic 1972) culture (Kleinman 1980) beliefs about disease
(Baumann Cameron Zimmerman amp Leventhal 1989) psychological state
(Watson amp Pennebaker 1989) and gender (Gijsbers van Wijk amp Kolk 1997
Roberts amp Pennebaker 1995)
The extant research on arrival time at the emergency department after
ischemic stroke onset does not reflect the complexity of symptom experience Nor
10
has this literature yielded a full description of how the early phase of stroke is
ldquolivedrdquo by individuals who develop this condition In addition the influence of a
personrsquos gender on the early symptom experience of stroke is largely unexplored
This initial qualitative investigation into the experiential aspects of early ischemic
stroke can contribute to our understanding of how women perceive evaluate and
respond to the symptoms of stroke
Conceptual Orientation
The conceptual orientation for this study combined a narrative perspective
on human experience and psychological phenomenology as it relates to bodily
experience The primary assumptions of a narrative perspective are that (1)
human beings have a predisposition to organize experience into narrative form
(Bruner 1990) and (2) narrative is a primary way through which people
construct meaning in their lives (Pinnegar amp Daynes 2007) Bruner (1990 pp 72‐
74) posited that human beings have a ldquoreadiness for meaningrdquo and are
predisposed to construe the social world in a particular way Bruner stated that
children grasp the significance of situations or contexts before they develop the
language skills to express these functions linguistically and he characterized this
pre‐linguist ability as a form of mental representation triggered by the acts of
others and social context
Polkinghorne (1988) similarly saw narrative as a form of pre‐linguistic
mental representation in which a series of temporally linked events are unified
11
into an integrated psychological phenomenon Constructing a story is a way that
human beings organize perception thought memory and action to makes events
in human life understandable and meaningful to the person telling the story as
well as to the listeners (Robinson amp Hawpe 1986)
Bruner (1986) distinguished narrative thinking from traditional scientific
thinking that is characterized by the search for universal truth conditions
Whereas traditional scientific thinking seeks to establish a cause and effect
relationship among factors narrative thinking deals with human action and
locates experiences in time and place and focuses upon human actions and their
consequences (Bruner 1986 p12) Narrative thinking searches for connections
between events actions and feelings Robinson and Hawpe (1986) described
narrative thinking as an open‐ended and exploratory process through which
people create and revise the meaning of experiences throughout their lives
Polkinghorne (1988) described several notions about the nature of human
existence relevant to the role of narrative expression as a primary meaning‐
making enterprise in human life These notions concern the context within which
human experiences occur the interaction of sensory perception and cognition
that constitutes human experience and the cognitive processes underling
narrative expression
First human experience occurs within a personal social and cultural sphere
of understanding (Polkinghorne 1988) Bruner (1990) posited that culture rather
12
than biology is the dominant force shaping human life Communal life depends
upon shared meaning created through discourse in which differences in meaning
and interruptions are negotiated (Bruner 1990 p 12) Cultural meanings guide
individualsrsquo actions and stories have social ramifications because they influence
the actions of other people (Robinson amp Hawpe 1986)
Second experience is constituted through the interaction of sensory
perception and cognition (Polkinghorne 1988) According to Bruner (1986)
constructing a narrative is a cognitive process involving two ldquolandscapesrdquo (p 14)
The first landscape involves the subject matter of story and the form the story
takes Culturally situated human action is the subject of narrative expression
(Bruner 1990) Stories have a protagonist some sort of issue or predicament
attempts to resolve the predicament and the outcome of these efforts (Robinson amp
Hawpe 1986) The second landscape concerns consciousness perception thought
and feeling (Bruner 1986) The cognitive process of creating a story links
temporally related events and associated perceptions and feelings in a way that is
explanatory (Polkinghorne 1988) An explanatory narrative constructs a coherent
and plausible explanation for how and why something occurred (Polkinghorne
1988 Robinson amp Hawpe 1986)
The third aspect of human experience underlying narrative expression is
that cognitive processes link a current experience to a past experience in order to
understand it in terms of a larger whole (Polkinghorne 1988) When constructing
13
a narrative explanation for an event in their lives individuals often attempt to
associate it with a previous and similar instance (Robinson amp Hawpe 1986 pp
117‐120) If an explanation based on a past experience does not ldquofitrdquo analogical
reasoning may be employed in which memory is probed to find a resemblance on
the same level of abstraction For example the search for understanding about
stroke onset may involve prior experiences involving sensory perception
However Robinson and Hawpe (1986) note that sometimes an event so stands out
in an individualrsquos experience that it become the reference point for a whole new
class of experience In this way narrative thinking can alter an individualrsquos way of
looking at the world
Stories are ubiquitous in human life because they are a successful and
efficient way for people to explain every day experiences (Robinson amp Hawpe
1986 Polkinghorne 1988) People construct narratives when their common sense
beliefs are violated If things are ldquoas they should berdquo there often is no need to
formulate a story (Bruner 1990) For this reason the vicissitudes of illness often
are expressed through narrative (Brody 1991 Frank 1991 Kleinman 1988)
Narratization is especially common when an illness was or is potentially life
threatening or had a significant effect on an individualrsquos life (Kleinman 1988)
Inherent in stories of illness is the realization that the body is the center of human
existence and when illness strikes the body becomes an object of experience
(Leder 1990)
14
The aim of psychological phenomenology is to describe the activities of
human consciousness and the manner in which meaning is constituted in every
day life (Toombs 1993 p xiv) The phenomenological theorists conceptualized
bodily experience as neither fully physiological nor fully psychological Merleau‐
Ponty (1962) and Sartre (1956) were influenced by Husserlrsquos (1964) idea that the
body is the basis for all experience Husserl saw body and consciousness as one
and he used the term ldquoliving bodyrdquo to describe the relationship between mind and
body Husserl posited that unlike other objects in the physical world the body is
both an organ of sensation and an organ of the will to accomplish our goals
Merleau‐Ponty (1962 p 173) expressed the nature of embodiment with
the phrase ldquoI am itrdquo We do not so much ldquohaverdquo a body than we ldquoarerdquo our body The
body ldquois a vehicle of being in the worldrdquo and to be embodied is to be ldquoinvolved in a
definite environment to identify oneself with certain projectshelliprdquo (Merleau‐Ponty
1962 p 94) He wrote that we act intentionally toward the world in our activities
and utilize objects ldquoready‐to‐handrdquo such as a pen as extensions of our bodies As
we carry out activities in the world we do not possess an awareness of the inner
workings of our body If it is our intention to stand up from a chair for example
that thought is translated into action without our conscious awareness of the
complex physiological process inherent in that action Yet paradoxically other
people have access to a certain type of knowledge of our body that is unavailable
to us For example an observer can apprehend the relationships between the
15
various parts of our body as we rise from a chair Thus the body has both
subjective and objective characteristics According to Merleau‐Ponty we are
neither ldquoinrdquo our body nor is our body an object
Sartre (1956) described three dimensions of bodily experience Being‐For‐
Itself is our every day experience of the body in which the body is the center of
reference in relation to things in the world It is ldquoour point of view but that for
which we donrsquot have a point of viewrdquo (p 340) because the body is not an object in
the sense of other material objects in the world According to Sartre we are not
consciously aware of the working of our bodies and our bodies as material
entities are ldquosurpassedrdquo while we go about our usual activities The second
dimension of bodily experience is Body‐For‐Others As a Body‐For‐Others we
recognize that like our own body the body of another is situated within the world
but we cannot ldquoliverdquo that other body (Sartre 1956 p345) The third dimension of
bodily experience described by Sartre concerns the awareness of how our body
appears to others In the gaze of another (the ldquolookrdquo) other people have a point of
view on our body that is inaccessible to us (Sartre 1956)
Central to the psychological phenomenological perspective on embodiment
is the idea that the body is largely ldquoabsentrdquo from our consciousness in the day to
day yet paradoxically it is through the body that we experience and act upon the
world (Leder 1990) It is in times of ldquobreakdown or problematic operationrdquo that
the body comes to thematic attention (Leder 1990 p127) During times of illness
16
our body may be apprehended as a material entity as we are unable to engage the
world in our usual manner (Toombs 1993)
The onset of stroke is associated with bodily changes such as muscle
weakness the sensation of numbness and difficulty articulating words Stroke
symptoms are described not only in terms of sensation (ldquomy arm felt weirdrdquo) but
with reference to the inability to perform everyday activities (ldquoI couldnrsquot hold the
spongerdquo) (Zerwic et al 2007) Thus in illness our body as a sensing organ and an
organ of the will comes to the foreground of consciousness An individual at stroke
onset who perceives that she cannot fit the key into the lock and turn the doorknob
focuses attention on her numb fingers and weak hand The key is no longer
ldquoutilizablerdquo and the numb hand becomes a ldquoregion of silencerdquo (Merleau‐Ponty
1962 p 95)
Although a central tenet of the phenomenological perspective is that that
the body and self are one during illness a distancing may occur from the
malfunctioning body (Toombs 1993) One manifestation of a body‐mind
separation in illness is when someone speaks of their body in the third person
This can occur in illness when an individual perceives that they do not have
control over their body (Thomas‐MacLean 2004) Persons who are ill may also
become aware of their body as an object of scrutiny for others if another person
calls attention to visible manifestations of illness In addition during encounters
with health professionals patients may perceive that they are an object as
17
attention is focused not on themselves as a person but on a part of their body
(Toombs 1993)
The character of lived space may be altered in illness Leg weakness and
paralysis is a common symptom of stroke onset that may cause problems moving
unrestrictedly Thus the environment may shrink if distances that once seemed
ldquonearrdquo are now experienced as ldquofarrdquo (Toombs 1993) The environment may be
perceived as hostile if stroke onset is accompanied by acute hypersensitivity to
light and sound (Taylor 2006) It is not only perceptions of the character of lived
space that may undergo change during stroke but the spatiality of the body may be
disturbed as well Illness may be accompanied by a distorted sense of where our
body is in space or where our limbs are in relation to the rest of our body (Sacks
1985)
Although the phenomenological perspective is concerned with the ldquothings
themselvesrdquo (Husserl 1964) Merleau‐Ponty (1962) addressed the influence of the
larger social world on human experience Merleau‐Ponty described ldquothe
phenomenological world hellipas revealed where the paths of my various experiences
intersect and also where my own and other peoplersquos intersect and engage each
otherrdquo (p xxii) The body in interaction with the social world is important to the
world as lived prior to reflective analysis such that consciousness the world and
the human body are intertwined (Merleau‐Ponty 1962)
18
Although gender is central to life experiences (de Beauvoir 1974) the
contribution of gender to bodily experience was not addressed in most
phenomenological thought (van Manen 1998) Although this inquiry is not guided
by feminist methodology the writings of the feminist philosopher de Beauvoir
(1974) are used here to elucidate how womenrsquos corporeal experiences may differ
from those of men and how this difference may be reflected in womenrsquos early
symptom experience of stroke
De Beauvoirrsquos (1974) classic study of womenrsquos lives The Second Sex
considered the social economic and psychological forces that assigned certain
meanings to womenrsquos physiology and which contributed to women being seen as
passive and their experiences as incidental to those of men (p 41) Several de
Beauvoir scholars assert that the traditional reading of her exegesis of women as
ldquootherrdquo in relation to men was reflective of a social constructionist perspective at
the expense of an emphasis on bodily experience Heinamma (2003) and Moi
(1999) argue for a more phenomenological reading of de Beauvoirrsquos work as it
concerns womenrsquos embodiment
De Beauvoir (1974) adopted the phenomenological perspective of Merleau‐
Ponty (1962) and Sartre (1956) that the body is not a thing but a situation and ldquoan
instrument for our grasp of the world a limiting factors for our projectsrdquo (p 38)
By conceptualizing the body as a situation de Beauvoir considered ldquoboth the fact of
having a specific kind of body and the meaning that the concrete body has for the
19
situated individualrdquo (Moi 1999 p 81) For de Beauvoir womenrsquos way of being‐in‐
the‐world encompassed both the biological fact of female physiology and the
female body in the world and acted upon by society (Moi 1999) The physiological
reality of womenrsquos bodies could not be separated from the context in which these
bodies were lived
Heinamma (2003 p 70 ‐73) developed the phenomenological themes in de
Beuvoirrsquos (1974) work and posited that due to reproductive functions there are
regularly occurring times in womenrsquos lives that they do not experience their bodies
as an ldquoorgan of the willrdquo vis a vis Husserl (1964) Heinamma posited that these
experiences create a unique context for womenrsquos bodily knowing in which women
have different and more frequent experiences than men of their bodies as
ldquosomething other than themselvesrdquo (p 73) Following this line of thought Kvigne
and Kirkvold (2003) suggested that womenrsquos past experiences with their bodies
may have made them attuned to vague internal sensations days and even weeks
prior to stroke onset that were discounted by health practitioners
Assumptions
To orient oneself to a particular point of view in a qualitative study is to
become acquainted with a certain way to look at an existing situation which in
this case is womenrsquos early symptom experience of stroke The conceptual
orientation for this study consisting of a narrative perspective on human
experience and a psychological phenomenological understanding of the body
20
directed my thinking about the phenomenon under study This way of thinking is
expressed in the assumptions with which I approached the study
Human experiences occur within a personal social and cultural sphere of
understanding
Human experience is constituted through the interaction of sensory
perception and cognition
In illness attention is drawn to the workings of the body in a way that
renders it a thematic object of experience (Leder 1990)
Human beings have ideas about illness constituted from personal social
and cultural experiences
Due to differences in physiology women and men have different life
experiences of their bodies
Gender may be an important influence on how symptoms are experienced
Narrative organizes perceptions thoughts memory and actions in a way
that makes events in human lives understandable
It is though narrative that the past and present are linked through memory
(Ricoeur 1979)
Acknowledging Bias
Acknowledging potential sources of bias is a component of the ethical
practice of research (Hewitt 2007) Doing so entails examining the qualities that
one brings to the research endeavor as well as values and beliefs that may
21
influence the study Patient choice is an important component of my philosophy of
nursing After researching the issue of arrival time and t‐PA I concluded that
earlier arrival at the emergency department is important because it gives women
the opportunity to consider thrombolytic therapy I do not believe that everyone
with ischemic stroke who is eligible for this treatment should have it The
National Institute of Neurological Disorders and Stroke rt‐PA Stroke Study Group
(1995) reported that 6 of the persons who received t‐PA experienced
intracranial hemorrhage (ICH) Each woman or her family if she is incapacitated
must balance the risks of ICH against the potential for improvement in functional
status
Significance to Nursing
By the year 2030 20 of the total US population will be age 65 or older
(Day 1996) The incidence of stroke increases with age (Rosamond et al 2008)
and a 30 increase in first time stroke is estimated between the years 1983 and
2023 (Malmgren Bamford Warlow Sandercock amp Slattery 1989) Due to their
longer lifespan the female population has 60000 more strokes each year than the
male population (Rosamond et al 2008) These demographics suggest that
nurses will provide care for increasing numbers of women during the acute phase
of stroke and afterwards as these women live with the challenges posed by
stroke‐related functional limitations and disabilities Research focused on gaining
a more in‐depth understanding of womenrsquos early symptom experience of ischemic
22
stroke as several implicatio h ns for nursing practice and stroke care
A Healthy People 2010 goal is the early identification and treatment of
stroke with the specific objective to increase awareness of stroke symptoms
(httpwwwhealthypeoplegovdatamidcourse) Because nurses provide care
for women with ischemic stroke in acute and rehabilitation facilities and in
primary care settings to women who may be at risk for a first or recurrent stroke
they are situated to provide information to women and their families about all
aspects of stroke including symptoms In these discussions nurses may use the
knowledge gained in this study to address womenrsquos questions and concerns about
seeking medical care for potential stroke symptoms
One aim of this study is a better understanding of how women experience
their bodies at the time of stroke onset This knowledge may be used by nurses
performing triage in the emergency department to recognize potential symptoms
of stroke in women Although delay arriving at the hospital is the primary reason
for low t‐PA use delays completing the required medical evaluation in time to
administer thrombolytic therapy are contributing factors to the low rates of t‐PA
administration (Barber et al 2001 Evenson et al 2001) Through a heightened
awareness of stroke in women nurses in supervisory and staff positions in the
emergency department may facilitate prompt medical evaluation for women
exhibiting symptoms of stoke
Past public education campaigns have emphasized increasing awareness of
23
24
stroke symptoms Despite evidence in the literature that public knowledge of
stroke has increased in the past decade delay seeking treatment for stroke
symptoms remains an issue of concern to the stroke community The American
Heart Association Council on Cardiovascular Nursing and Stroke Council called for
researchers to move beyond studies examining socio‐demographic and clinical
correlates of arrival time and to engage in research aimed at a fuller
understanding of the social cognitive and emotional factors that contribute to
delay in persons with stroke (Moser et al 2007) This study supports that goal
Summary of Chapter One
Stroke is a leading cause of death and disability T‐PA is the only FDA‐
approved treatment to reduce stroke‐related functional limitations It must be
given within 45 hours of symptom onset (del Zoppo et al 2009) but most people
arrive at the emergency department too late to receive this treatment There is
some evidence to suggest that women may arrive at the hospital for stoke
symptoms later than men There is little research on the experiential aspects of
womenrsquos early symptom experience of stroke A conceptual orientation
consisting of a narrative perceptive on human existence and a phenomenological
perspective on the body is a way for researchers to gain insight into womenrsquos
experiences during early stroke
Chapter Two Review of the Literature
Six areas of the literature were reviewed to provide a foundation to
understand womenrsquos early symptom experience of ischemic stroke The literature
review begins with an overview of stroke in women The second section is a
discussion of the symptoms of stroke The third section consists of a presentation
of theoretical perspectives on symptom experience This is followed by a review of
studies in which a phenomenological perspective on the body was used to examine
womenrsquos experience of symptoms This is not an exhaustive review of this
literature but is intended to provide a foundation to view womenrsquos bodily
experiences during early stroke from a phenomenological perspective Section five
consists of the qualitative literature on the early symptom experience of stroke
The final section of the literature review provides a summary of studies on factors
associated with the timing of peoplersquos arrival at the hospital after first noticing the
symptoms of ischemic stroke This was considered a necessary part of the review
because this body of work contains information about symptom experience
Overview of Stroke in Women
The results of the Framingham Heart Study indicated that the lifetime
incidence of stroke is 1 in 5 (20) for women and 1 in 6 for men (Seshadri et al
2006) Women are significantly older than men at the time of stroke (Kapral et al
2005 Roquer Campello amp Gomis 2003) African American women have a higher
rate of stroke than Anglo and Hispanic women (Gorelik 1998 Sacco 1998) The
25
percentage of Anglo African American and Hispanic women who reported a
histor y of stroke in 2005 was 23 40 and 26 respectively (CDC 2007b)
Recent evidence is suggestive of a change in the demographics of stroke
incidence in midlife women Towfighi Saver Engelhardt and Ovbiagele (2007)
reported that in the years 1999 to 2004 women aged 45‐54 had twice the odds of
having had a stroke compared to men in the same age group (OR = 239 95 CI
132 to 432) Towfighi et al posited that their finding may reflect an increase in
women of stroke risk factors such hypertension and elevated cholesterol levels or
a greater reduction in stroke risk factors among men Kisella et al (2010)
reported that the incidence of stroke in people age 20 ‐ 45 increased from 4 to 7
percent between 1993 ‐94 and 2005
General risk factors for ischemic stroke include hypertension (Seshadri et
al 2001) atrial fibrillation (Wolf Abbott amp Kannel 1991) transient ischemic
attack (TIA) (Hill et al 2004) cigarette smoking (Wolf DrsquoAgostino Kannel
Bonita amp Belanger 1988) and a sedentary lifestyle (Sacco et al 1998) Living in
poverty and lower educational levels also are associated with increased risk of
stroke (Pleis amp Lethbridge‐Ccedilejku 2007) Risk factors unique to women include
pregnancy and particularly the post partum period (Kittner et al 1996) oral
contraceptives (Gillium Mamidipudi amp Johnston 2000) and combination
(estrogen plus progesterone) hormone replacement therapy (Wasserthiel‐
Smoller et al 2003) Women with a diagnosed stroke were significantly more
26
likely than men with stroke to have a history of hypertension and atrial
fibrillationcardioembolic disease (DiCarlo et al 2003 Kapral et al 2005 Roquer
et al 2003)
A healthy lifestyle may have a protective effect against stroke in women
Participants in the Womenrsquos Health Study who reported that they did not smoke
had a low body mass index exercised regularly and consumed alcohol in
moderation had fewer ischemic strokes than women who did not report these
health practices and characteristics (Kurth et al 2006) Results from the Nurses
Health Study indicated that women age 34 to 59 who consumed a diet high in
fruits vegetables and plant protein and low in animal protein had lower rates of
stroke than women with different dietary patterns (Fung et al 2008)
Women fare worse in the immediate post‐stroke period compared with
men and have more in‐hospital complications (Roquer et al 2003) longer
hospital stays (DiCarlo et al 2003) and poorer functional status at discharge from
the hospital (Gargano et al 2008) Compared with men women are more likely to
enter an extended care facility or nursing home after a stroke (Dicarlo et al 2003
Holroyd‐Leduc Kapral Austin amp Tu 2000 Kapral et al 2005) Some studies
found higher in‐hospital mortality rates for women (DiCarlo et al 2003) but this
was not the case in other studies (Kapral et al 2005) Although the 30‐day
mortality rate following stroke has decreased for men in the last 50 years from
23 to 14 (p = 01) there has not been a corresponding decrease reported for
27
women (Carandang et al 2006)
Stroke is a major cause of long‐term functional limitations and disability for
both sexes (Clark Black amp Colantonio 1999 DrsquoAlisa Baudo Mauro amp Miscio
2005 Hartman‐Maeir Soroker Ring Avni amp Katz 2007) but compared with men
women are more disabled after a stroke (Petrea et al 2009) Women report
greater difficulty than men with instrumental activities of daily living (Lai
Duncan Dew amp Keighley 2005) poorer physical functioning (DiCarlo et al 2003
Kapral et al 2005) and poorer quality of life in the areas of mental health and
physical functioning (Gray et al 2007) in the months after a stroke Kelly‐Hayes
et al (2003) attributed the gender disparity in stroke outcomes to womenrsquos
greater age at the time of stroke and more pre‐existing health conditions
However DiCarlo et al (2003) and Lai et al (2005) reported that womenrsquos poorer
outcomes persisted after the effects of age co‐existing health conditions and pre‐
stroke levels of functioning were statistically controlled
Summary
Due to their greater longevity women have more strokes than men After
suffering a stroke women have more medical complications and poorer functional
outcomes compared with men (DiCarlo et al 2003 Gray et al 2007 Kapral et al
2005) Womenrsquos greater age at the time of stroke and poorer pre‐stroke level of
functioning may contribute to these less than optimal outcomes (Kelly‐Hayes et al
28
2007) In addition to the risk factors for stroke they share with men women face
unique risks associated with pregnancy and exogenous hormones
Symptoms of Stroke
It is customary to describe symptoms of ischemic stroke with reference to
the artery in which the occlusion occurs and the corresponding region of the brain
supplied by that artery which are referred to as arterial territories (Whisnant et
al 1990) This practice is followed because stroke symptoms generally
correspond to the brain functions of the arterial territory affected by the occlusion
The vascular system of the brain is comprised of two main components the carotid
system and vertebrobasilar systems which are known respectively as the
anterior and posterior circulation (Sacco 2005) The anterior circulation supplies
blood to the eye and the frontal parietal and anterior temporal lobes of the
cerebrum The main arteries of the carotid system are the right and left common
carotid arteries which arise respectively from the innominate artery and aortic
arch The internal carotid artery branches off from the common carotid and
divides into the middle cerebral artery and anterior and posterior cerebral
arteries Middle cerebral artery occlusions account for 355 of first time ischemic
strokes (de Freitas amp Bogousslavsky 2004)
In the vertebrobasilar system the vertebral arteries originate in the
subclavian artery and join together after they enter the skull The basilar artery
originates from the merger of the vertebral arteries and supplies blood to the
29
midbrain pons and medulla Branching out from the distal portions of the
vertebral arteries are the anterior and posterior spinal arteries and posterior
inferior cerebellar artery The anterior inferior cerebellar artery arises from the
basilar artery The posterior circulation supplies blood to the medulla pons
cerebellum occipital lobe inferior surface of the temporal lobe and part of the
thalamus
A roughly circular vascular structure called the circle of Willis is located at
the base of the brain The circle of Willis is formed by the joining of the internal
carotid and the vertebral arteries The anterior and posterior circulations
communicate through this structure by means of the posterior communicating
artery Arteries that branch out from the circle of Willis include the anterior
cerebral arteries middle cerebral arteries and posterior cerebral arteries
Small arteries penetrating deep into the brain arise from the larger arteries
of the anterior and posterior circulations and their branches These terminal or
non‐branching vessels perfuse the internal capsule basal ganglia thalamus corona
radiate and parts of the brainstem Approximately twenty percent of all ischemic
strokes occur in a single small artery deep inside the brain (Ohira et al 2006)
which are referred to as lacunar strokes (Fischer 1965)
The symptoms of ischemic stroke (eg syndromes) correspond to the
arterial territory affected by the occlusion The brain functions of an arterial
territory generally determine which types of symptoms are present (Table 1) For
30
example posterior cerebral artery syndrome refers to symptoms arising from the
area of the brain affected by occlusion of the posterior cerebral artery Since a
portion of the posterior cerebral artery territory involves vision an occlusion in
this artery or its branches usually results in some degree of visual loss However
symptoms are not always a precise indicator of the location of the occlusion The
extent of collateral circulation variations in vascular anatomy and the location of
the occlusion with reference to the circle of Willis all can influence symptom
presentation (de Freitas amp Bogousslavsky 2004)
31
T able 1
Art rrit ries an ynd omes erial Te o d Stroke S r
Territory ArteryInternal carotid
Syndromes Ipsilateral blindness (same side of body as occlusion) Contralateral hemiparesis (muscular weakness or partial paralysis on opposite side of the
)
body from occlusion) Sensory loss Aphasia (difficulty with spoken and written communication
Middle cerebral
Lateral cerebral hemisphere internal capsule basal ganglia
Hemiparesis (weakness or partial paralysis on one side of body) Sensory loss Homonymous hemianopia (blindness in one half of the visual field of both eyes) Contralateral gaze paresis Aphasia Sensory loss
Anterior cerebral
Medial aspect of frontal lobes
Hemiparesis Sensory loss of distal contralateral leg Motor neglect Urinary incontinence Speech
disturbance Posterior cerebral
Occipital lobe medial aspect of temporal lobe
Homonymous hemianopia Color blindness culomotor palsy Memory disturbance Sensory O
loss Amnesia
Vertebral posterior
r
or
inferior cerebella
Lateral medulla Vertigo Nausea Nystagmus (involuntary side‐to‐side movement of the eyeballs) Aphasia
Hoarseness Impaired pain and temperaturesensation on ipsilateral face
Anterior inferior cerebellar artery
Lateral pons Vertigo Nystagmus Inability to coordinate voluntary muscular movements Impaired pain and temperature sensation
Basilar artery ranches
Thalamus cerebellum bmedulla pons movement distur
Contralatreral hemiparesis Ipsilateral facial weakness Difficulty articulating words Eye
bances ote Adapted from ldquoCerebral Infarctionrdquo by JC Brust in Merrittrsquos Neurology (pp 95‐3 N2
32
03) edited by L Rowland 2005 Philadelphia Lippincott Williams amp Wilkins
The classic symptoms of stroke are sudden weakness or numbness of a limb
or the face difficulty speaking problems with vision and balance lack of
coordination dizzinessvertigo and severe headache (Torner 2005) Motor
weakness was present in 70 of ischemic stroke patients in a large sample (N=
15831) followed in frequency by disturbances in speech (46) and gait (37)
(Kimura et al 2004) Visual disturbances are not a frequent symptom of ischemic
stroke and were present in only 4 of patients (Kimura et al 2004) The
frequency with which persons with ischemic stroke reported headache varied
between 3 (Kimura et al 2004) and 23 (Tentschert Wimmer Greiseneggerm
Lang amp Lalouscheck 2005) In most cases dizziness or vertigo without other
symptoms is not indicative of a stroke (Kerber Brown Lisabeth Smith amp
Morgensterin 2006)
Sudden onset of neurological symptoms is a hallmark of stroke but in some
instances there may be premonitory symptoms prior to stroke onset Stuart‐Shor
et al (2009) reported that 35 of persons with ischemic stroke reported
prodromal symptoms which these authors defined as symptoms occurring prior
to the 24 hours of hospital admission for stroke After stroke onset symptoms may
continue to develop or worsen over several days (Whisnant et al 1990) Different
patterns of stroke onset that vary according to stroke type have been described
Symptoms that are at their maximum severity at symptom onset often are caused
by a stroke of embolic origin (Yamamoto Matsumoto Hashikawa amp Hori 2001)
Some individuals have what Yamamoto et al (2001) called a ldquostutteringrdquo onset in
which an initial symptom appears improves and then worsens this type of pattern
is associated with formation of a thrombus
33
Stroke can occur at any time of the day or night but both ischemic and
hemorrhagic strokes have a circadian pattern with a peak occurrence of stroke
between 6 am and noon and the lowest incidence between midnight and 6 am
(Elliott 1998) In one study 17 of 1168 persons diagnosed with ischemic stroke
awoke with symptoms (Barber et al 2001) Multiple factors are posited to
contribute to the timing of stroke onset including circadian fluctuations in vascular
tone blood pressure and coagulation factors (Manfredini et al 2005)
Researchers have undertaken to examine if women experience unique
symptoms of stroke (Table 2) Taken together the results from these studies is
suggestive that women report the classic symptoms of stroke with the same
frequency as men (Barrett et al 2007 Di Carlo et al 2003 Gargano et al 2000
Labiche et al 2002 Roquer et al 2003 Stuart‐Shor et al 2009) However
reaching a definitive conclusion about womenrsquos unique symptoms is hampered by
methodological differences among the studies In particular the inclusion of both
hemorrhagic and ischemic stroke in some studies may have obscured gender
differences because hemorrhagic stroke is associated with a different symptom
pattern than ischemic stroke (Efstathiou et al 2002)
The results of several studies in which persons with hemorrhagic stroke
were excluded from the sample provided some evidence that womenrsquos symptom
pattern in ischemic stroke may vary somewhat from that of men Labiche et al
(2002) found that compared with men women were more likely to report a
34
nontraditional stroke symptom such as pain Stuart‐Shor et al (2009) reported
that women were more likely than men to report at least one nonspecific
ldquosomaticrdquo symptom (eg headache change in behavior difficulty understanding
nausea and change in vision feels ldquofunnyrdquo fatigue malaise or ldquootherrdquo symptoms )
but they found no difference between women and men in the type of somatic
symptom
The Stuart‐Shor et al (2009) study was the only study found in which
gender differences in prodromal symptomswere examined When somatic
symptoms were grouped into one variable women were more likely than men to
eport any somatic prodromal symptom (Stuart‐Shor et al 2009) r
35
T able 2
Gender and Strok ptoms Studies
e Sym
male) ype () Measurement
AuthorCountry
N ( Fee T
Design Symptom Strok Barrett et al 2007 US
505(45) ) I (100
Prospective Multi Center
2 stroke scales
DiCarlo et al 2003 Europe
4499(50) I(60)
H(12)
Prospective Multi Center
Clinical status at time of maximal impairment
Garg200
ano et al 9
US
1922(54) I(67) TIA(23)
H(10)
Prospective Multi Center
Symptom report at admission
Kapral et al 2005 Canada
3323(46) I(78)
H(19)
Retrospective Medical Record Review
Labic2002
he et al
US
1124(58) I(65) TIA(22) H(87)
Prospective Multi Center
Interview
Lisabeth et al 2009 US
461(49) 0) ITIA(10
Prospective Interview
Rathore et al 2002 US
474(47) I(85) H(15)
Retrospective Medical record Review
Roquer et al 2003Spain
1581(48) I(100)
Prospective Clinical status atadmission
Stuar2009S
t‐Shor et al I(100) Review
1107(55) Retrospective Medical Record
UNote I = ischemic stroke TIA = transient ischemic attack H = hemorrhagic stroke
36
Summary
The symptoms of ischemic stroke relate to the region of the brain supplied
by the occluded artery and also depend upon the part of the artery in which the
occlusion occurs the extent of collateral circulation and individual variations in
anatomy The most frequent symptoms of stroke are sudden onset of weakness in
a limb or the face and speech gait and sensory disturbances The pattern of stroke
onset may vary and some individuals may have maximal impairment at stoke
onset whereas in other cases symptoms may worsen over time Women appear to
experience the classic symptoms of stroke with the same frequency as men There
was some though limited evidence that women are more likely to report a
nonspecific ldquosomaticrdquo symptom either before or within 24 hours of hospital
admission for an ischemic stroke (Stuart‐Shor et al 2009)
Theoretical Perspectives on Symptom Experience
Cognitive approaches to symptom experience
A starting point to consider cognitive approaches to symptom experience
is Schachter and Singerrsquos (1962) classic experiment during which people labeled
an experimentally induced state of physiological arousal according to the
explanations made available to them Burnam and Pennebaker (as cited in
Pennebaker 1982) determined experimentally that people were more likely to
label exercise‐related physiological sensations as illness if a researcher suggested
to them the flu was going around Pennebaker (1982) saw symptom labeling as
highly individual in that what one person means by a label (eg ldquoshortness of
breathrdquo) may be different for another person
The concept of attribution is similar to labeling and is based on the
propositions that (1) people are motivated to assign a cause to behavior and will
37
seek information that will assist in this process (2) attribution occurs
systematically and (3) attributions influence subsequent feelings and behaviors
(Jones et al 1971 p xi) Empirical research demonstrated that people frequently
assigned labels to symptoms (flu) and attributed a cause to their symptoms (eg
change of weather) (Lau amp Hartman 1983 Lau Bernnard amp Hartman 1989) Not
only did people seek causes for symptoms but they sought symptoms to match a
particular medical diagnosis they had been given (Baumann et al 1989)
Labels or attributions for symptoms are components of the mental ideas or
images people have about illness These ideas are variously referred to as
prototypes (Bishop 1991) psycho‐physiological schemas (Cacioppo Andersen
Turnquist amp Tassinary 1989) and illness representations (Leventhal et al 1980)
They function as a sort of ldquotemplaterdquo against which to compare current symptoms
(Bishop 1991) As described by Leventhal et al (1980) illness representations
consist of (1) the label for the illness and knowledge of the symptoms associated
with that label (2) beliefs about the course or time line of the illness (3)
consequences of illness (short or long term effects) and (4) etiology of the illness
People make use of previous experiences and social context to construct illness
representations Illness representations are associated with peoplersquos response to
symptoms Individuals with new symptoms who had well developed illness
representations (a label for symptoms and rating symptoms as serious) were
more likely to seek medical services than individuals with new symptoms whose
38
illness representations did not contain these elements (Cameron Leventhal amp
Leventhal 1993)
Illness representations figure into cognitive theories that delineate the
processes involved in evaluating and responding to symptoms Leventhal and
colleaguesrsquo self‐regulation model of illness behavior envisioned individuals as
information processing systems integrating knowledge and past experiences and
responses in two parallel and interacting cognitive and emotional pathways
(Leventhal et al 1984) This process has three stages the first of which is the
illness representation The second stage involves developing and implanting a
response based on the illness representation in order to minimize a health threat
In the third stage appraisal an individual evaluates the effectiveness of the
response which may further shape and redefine the illness representation
Cacioppo et al (1989) emphasized the role of memory in the retrieval of
psycho‐physiological schemas activated by the development of unexplainable
symptoms Schemas consist of attributions (eg nausea may be due to eating
something bad) and prototypes (eg abdominal pain may indicate appendicitis)
The outcome of the comparison between the schemas and current symptoms is
influenced by the strength of the comparison as well as social environmental and
contextual factors The more diffuse the symptoms the greater number of
potential comparisons If a satisfactory comparison between schema and
symptom is not made people focus attention on aspects of their symptoms that
39
ldquofitrsquo the available schemas
Cofffirsquos (1991) cognitive‐perceptual model of somatic interpretation
distinguished attention to symptoms from the meanings and implications of
symptoms She posited that in addition to environmental stimuli competing
cognitions may deflect attention from a symptom especially if it is mild Thus
worries about work will reduce attention to symptoms The same physiological
sensation can produce multiple interpretations including that a symptom is a
normal response to the environment (eg cold hands reflect outside temperature
instead of illness) Both the attention one pays to a physical sensation as well as
the attribution may reflect pre‐existing hypotheses such as current worries about
onersquos health
Other theorists described the influence of internal and external stimuli on
the processing of sensory information The competition of cues model
(Pennebaker 1982 p 20) is based on the following assumptions (1) there are
limits on the amount of information people can process at one time (2)
information exists both inside the organism and in the external environment and
organisms can shift attention between these sources of information and (3)
passive encoding of information and an active search for information both occur
According to the model attention to physiological states will decrease and people
will be less likely to focus internally in the presence of increasing stimulation
from the external environment Conversely if the external environment provides
40
few stimuli somatic information is more likely to be processed
Social approaches to symptom experience
Pescosolido (1992) emphasized the role of social relationships in medical
decision making rather than cognitive processes in the social organization
strategy framework for decision making (SOS) Of primary concern in this
approach is the social organization of individualsrsquo decisions in response to
problematic events Pescosolido theorized that life events are embedded in a pre‐
exiting social framework and that decisions in response to those events involve ldquoa
dynamic interactive process fundamentally intertwined with the structured
rhythms of social liferdquo (p 1105) In the SOS framework interactions with other
people are not merely one of many potential influences on decision making but
are the primary mechanism underling how a problem is defined and the actions
taken in response to the problem
Other ideas about the role of social factors in symptom experience were
offered by Mechanic (1972) who proposed that symptom response is in part a
social learning process whereby children learn appropriate responses to
symptoms based on the reactions of other people to their behaviors Suchman
(1965) posited that when physical symptoms develop people often seek
information and advice from other people and that an important aim of this
activity is to obtain social approval to relinquish usual activities and
responsibilities and assume the sick role Berkman and Glass (2000) described
41
several ways that social networks influence health status including facilitating
access to health resources and encouraging help seeking behaviors
Cultural approaches to symptom experience
Kleinman and colleagues (Kleinman 1980 Kleinman 1988 Kleinman
Eisenberg amp Good 1978) saw culture as the dominant force shaping symptom
experience Central to this approach were ldquoexplanatory modelsrdquo or ideas people
hold about an episode of illness and which include the manner and timing of
symptom onset cause of symptoms expected course of the illness and possible
treatments (Kleinman 1980) Explanatory models reflect social class cultural
beliefs education occupation religious affiliation and past experiences with illness
and health care (Kleinman et al 1978 p 256) The models may contain a
multiplicity of meanings and be vague and characterized by lack of boundaries
between ideas and experiences (Kleinman 1980) When expressed as ldquosituated
discourserdquo or stories of illness explanatory models are themselves a form of illness
behavior governed by cultural rules and social context (Good 1986)
Young (1981) argued that explanatory models are not always facsimiles of
peoplersquos actual thoughts and feelings about an illness episode To understand
peoplersquos statements about illness a researcher must be able to articulate the kinds
of knowledge and reasoning that went into the formation of an illness narrative In
addition to explanatory models which rely on causal logic Young saw two other
knowledge structures at work in illness narratives prototypes and chain
42
complexes Prototypical knowledge makes use of analogical thinking such as
metaphors whereas as chain complexes sequentially link events leading up to an
illness episode without causally linking the events to the current circumstance
(Young 1981 Kirmayer Young amp Robbins 1994)
Summary
Theoretical approaches to symptom experience variously emphasized
cognitive social and cultural processes A component of many theories is that
people form mental ideas or representations about symptoms and illness
Labeling a physical state or attributing it to a particular cause is a component of
illness representations The ideas people hold about symptoms and illness are
highly individual and influenced by previous experiences and social context
(Bishop 1991 Leventhal et al 1980 Pennebaker 1982) Some theorists see
ulture as having a central role in symptom experience (Kleinman 1980) c
Phenomenological Perspective on Symptom Experience
A predominant theme that emerged from a review of studies using a
phenomenological perspective on the body to examine womenrsquos symptom
experience was that womanrsquos usual way of being in the world changed in the
presence of symptoms and this change was located at the intersection of the body
and womenrsquos activities in the world The body offered up sensations such as urine
trickling down the legs numbness muscle pain weakness and the urgency to
defecate that were intrusive and disruptive of every day activities For example
43
women with MS found that routine tasks were difficult to accomplish due to
fatigue and muscular weakness (Olsson Lexell amp Soderberg 2008) and women
with chronic urinary incontinence curtailed exercising and socializing due to the
disruptive effect of symptoms on these activities (Haumlgglund amp Ahlstroumlm 2007
Komorowski amp Chen 2006) The symptoms of irritable bowel syndrome (IBS) and
inflammatory bowel disease (IBD) prevented women from participating fully in
social occasions involving food (Schneider amp Fletcher 2008)
Arising from changes in womenrsquos ability to carry out their activities were
perceptions that the body no longer was under conscious control Women often
saw themselves as at the will of their bodies and no longer in charge of their
bodiesrsquo functioning This realization often was accompanied by a sense of
powerlessness (Haumlgglund amp Ahlstroumlm 2007 Hilton 2002) Contributing to
womenrsquos feelings of powerlessness was the unpredictable nature of some
symptoms Women with MS (Olsson et al 2008) and IBSIBD (Schneider amp
Fletcher 2008) described feeling helpless and vulnerable that their symptoms
could occur without warning In similar vein the bodies of women with FMS were
characterized as treacherous when women had good and bad days (Raringheim amp
Haringland 2006)
The sense of powerlessness engendered by symptoms was illustrated by
the use of war imagery by researchers and participants Olsson et al (2008) wrote
that illness had ldquocaptured the bodyrdquo of women with MS Lindwall and Bergbom
44
(2009) described the bodies of women with breast cancer as ldquoinvadedrdquo and
Raringheim and Haringland (2006) likened the bodies of women with FMS to the enemy A
woman with IBS expressed the feeling that her condition kept her ldquohostagerdquo
(Schneider amp Fletcher 2008) These images and analogies reinforced the extent to
which a wide variety of symptoms exerted control over womenrsquos lives
That the women in these studies perceived themselves as no longer in
control of their bodies speaks to the disunity between body and self that can occur
in illness (Toombs 1993) A sense of the body as in some way separate from the
self was evident when physical symptoms caused difficulty with every day
activities For example women with post‐stroke paralysis became frustrated with
their uncooperative bodies when they momentarily forgot about this bodily
change and took a step and fell (Kvingne Kirkevold amp Gjengedal 2004) Women
with breast cancer felt as though their body had failed them by allowing the cancer
to grow and they referred to the cancer as an ldquouninvited guestrdquo (Lindawall amp
Bergbom 2009) Other women with breast cancer referred to ldquotherdquo body rather
than ldquomyrdquo body (Thomas‐MacLean 2004) Regardless of the type of symptom
women felt betrayed by their bodies
Perceptions of the body as in some way separate from the self sometimes
arose during social interactions There were occasions when the women were
acutely aware that their bodies were being viewed through the eyes of others
Drawing on Sartrersquos (1956) idea that we apprehend ourselves as an object through
45
the gaze another person (lsquobeing‐for‐the‐Otherrsquo) Toombs (1993 p 59) argued that
in illness the experience of lsquobeing‐for‐the‐Otherrsquo often is one of alienation This was
the case in the aftermath of stroke when a woman felt that through her altered
body she was ldquoexposed to viewrdquo (Kvingne et al 2004) Women undergoing
treatment for breast cancer felt that it was their body and not themselves that was
the focus of medical attention and their body was something to be manipulated by
others (Thomas‐MacLean 2004)
These studies also were instructive of the manner in which womenrsquos
symptom experience is reflective of culture and life experience Women in China
often blamed themselves for their urinary incontinence and one source of self
blame was failing to adhere to the Chinese custom that a women rest in bed for one
to three months after childbirth (Komorowski amp Chen 2006) Other explanations
for incontinence such as eating the Chinese lichee nut or catching incontinence
from a co‐worker who was perceived as going to the bathroom a lot were formed
within the context of a particular culture (Komorowski amp Chen 2006) These
findings were instructive of the way that ldquosituatedrdquo womenrsquos bodies imbued bodily
experiences with meanings reflective of society (de Beauvoir 1974)
Some symptoms were considered taboo Women associated urinary
incontinence with childhood bedwetting and experienced shame about their
symptoms (Haumlgglund amp Ahlstroumlm 2007) Symptoms of IBSIBD were considered
shameful and embarrassing due to the intimate nature the disorder and the fact
46
that it often could not be concealed from others (Schneider amp Fletcher 2008)
Meyers (2004) wrote of her experiences as a woman with bowel disease that this
condition ldquoresides in a part of the body that people outside the medical field are
reluctant to discussrdquo (p 258) For women with incontinence and IBSIBD
culturally derived ideas about bodily functions were central to their experience of
symptoms
Summary
Selected studies were reviewed in order to gain a phenomenological
understanding of womenrsquos experiences of bodily change in illness Symptoms
interfered with womenrsquos ability to accomplish routine and desired activities
Women perceived a separation between themselves and their bodies that was
associated with the perception that they could not control their body Feeling
powerless over the body was common Womenrsquos symptom experience occurred
within the context of culture and life situation A phenomenological approach to
the body provided understanding of womenrsquos experience of symptoms
Qualitative Literature Early Symptom Experience of Stroke
The most comprehensive account of symptom onset in the qualitative
literature was found in a study combining narrative and phenomenological
perspectives by Faircloth et al (2005) who interviewed 111 US male veterans 5
times in the 24 months following a stroke as part of a larger mixed method project
The participants used three narrative mechanisms to construct the experience of
47
stroke onset The authors drew upon Schutzrsquos (1970) (cited in Gubrium amp Holstein
1977 p 138) idea that human beings characterize events in their lives as ldquoan
instance of some known typerdquo in order to give meaning to experience (eg
ldquotypificationrdquo) Participants interpreted and made sense of symptoms by
describing them according to familiar experiences often through the use of
metaphors One man described himself as a fish ldquoflopping around on the dockrdquo
Expressions such as ldquofogbankrdquo and ldquoblack boxrdquo were used to convey visual
symptoms Stroke as an internal communicative act consisted of participants
engaging in an internal dialogue in which they asked themselves what was
happening with their body Minimizing symptoms occurred when the men used
innocuous vocabulary to describe their symptoms such as describing the inability
to talk as ldquoannoyingrdquo Another described himself as not possessing ldquoinitiativerdquo and
ldquodriverdquo during stroke onset The absence of pain was considered an indication that
nothing was seriously wrong
The bodily experiences associated with stroke onset were also described in
an interpretive phenomenological study of recovery after stroke by Doolittle
(1991) who interviewed 13 individuals (5 female) an average of 9 times in the
first 6 months following lacunar stroke Selection criteria for the sample were
unilateral weakness of arm leg or both and the ability to communicate in an
interview The first interview took place within 72 hours of stroke onset Data
analysis revealed seven themes related to stroke onset and the period of time in
48
the hospital prior to discharge Bodily Experience Stroke in Evolution Meaning of
Hospitalization Living with Uncertainty Differing Medical and Personal Views of
Recovery Facing the Night and Discharge Home Participants described their
reactions to the sudden immobilization of one side of their body in terms of total
disability and dependency For these individuals bodily weakness equaled the
stroke During the first few days after stroke participants described themselves
as shocked stunned and frightened as their leg or arm became weaker even as
they remained awake and mentally alert in the hospital The participants were
confronted with the reality that medical science could not cure them They
expressed uncertainty about the future Paralyzed limbs were described as no
longer under their control and were objectified Participants referred to parts of
their anatomy as ldquothisrdquo and spoke of ldquotherdquo leg Persons with slurred speech and
facial paralysis described a diminished sense of social control
Data related to the bodily experiences of women during stroke onset were
part of the results of an investigation into the manner in which women
experienced their post‐stroke bodies Combining feminist and phenomenological
perspectives Kvigne and Kirkevold (2003) interviewed 25 women in rural
Norway three times during the two years after their strokes There was a small
amount of data presented about stroke onset The women recounted vague and
unfamiliar bodily sensations days or weeks prior to the stroke that they noted as
out of the ordinary and which trigged thoughts that something might be wrong
49
The circumstances of stroke onset varied among participants One woman awoke
with left‐sided paralysis and anotherrsquos hand stopped working while writing a
letter Reactions to these events often were feelings of disbelief One woman told
the doctor ldquoThat is not merdquo Other participants described lying incapacitated and
waiting for someone to come to their aid The authors concluded that participants
were deeply affected by the events associated with stroke onset which were
discussed in all three interviews
Feelings of disbelief that a stroke could be happening were also evident in
the results of a phenomenological study by Burton (2000) who examined the
experience of living with the effects of stroke in 6 persons (4 female) interviewed
8 to 15 times during the first year after stroke Feelings of suddenness and
catastrophe were evident when participants were asked to ldquotell the story of their
strokerdquo while still in the hospital Two participants sensed the ldquostroke in progressrdquo
and felt as though their bodies were disappearing Others were fearful that they
did not know what was happening to them Several participants continued to have
a worsening of symptoms after hospitalization and expressed dismay that this
could happen in the hospital
Bodily sensations associated with stroke onset were described as ldquoweirdrdquo
ldquostrangerdquo and ldquofunnyrdquo in unstructured interviews in a mixed method study to
examine knowledge of stroke symptoms and factors associated with delay
(Zerwic et al 2007) These researchers interviewed 38 persons hospitalized for
50
ischemic stroke (26 female) and asked participates to describe the events from
the time they recognized symptoms to the time they entered the health care
system After becoming aware of symptoms several participants described trying
to continue performing their usual activities despite the presence of symptoms
The symptom representations of stroke held by the persons in this study included
the ideas that stroke was associated with paralysis and problems with speech
Most participants said that another person noticed the symptoms and asked what
was wrong and these people often suggested medical consultation One woman
described hiding the symptoms from her daughter and recounted her reluctance
to talk with anyone about what occurring even as her symptoms continued to
worsen over the next 24 hours
African American elders also described hiding symptoms from other people
in a narrative inquiry into care giving in rural African American families Eaves
(2000) interviewed 8 persons (6 female) with stroke who were discharged from a
rehabilitation facility within four months of data collection and 18 of their
caregivers The data analysis contained five themes three of which concerned
symptom onset and seeking medical care In Discovering Stroke participants
described the onset of symptoms (ldquoarm and leg was getting real slowrdquo) and
revealed that they did not know what the symptoms meant (ldquoI couldnrsquot read them
signsrdquo) They called adult children to talk about their symptoms Six patterns of
Delaying Treatment (Waiting Keeping Secrets Convincing Verifying Seeking Care
51
and Consequences of Waiting) were identified Waiting referred to the manner in
which several participants waited days before seeking medial care Keeping
secrets revealed how participants did not tell family members about their
symptoms Convincing described the attempts of family members to persuade the
affected person to get medical help In verifying family members contacted one
another to discuss the symptoms Seeking care described the actual decision to
seek care which often was instigated by a family member Consequences of
waiting consisted of the realization that delays obtaining medical care may have
contributed to a more severe stroke The third theme with data about stroke
onset Living with Uncertainty contained one sub‐theme Discerning in which
family members tried to determine if the symptoms were related to a preexisting
or new health problem
The role of other people also emerged in a qualitative study conducted to
describe the illness trajectory of the first year after stroke Kirkvold (2002)
collected data by means of 5‐10 semi‐structured interviews with each of 9
participants (3 female) There was a small amount of data about the onset of
stroke Two of the male participants said their wives noticed the symptoms and
made the decision to seek medical help The authors stated that other participants
were unable to provide a detailed description of the events associated with stroke
onset
To gain understanding of their experience of stroke from the time of
52
symptom onset to their arrival home from the hospital Olofsson Andersson and
Carlberg (2005) interviewed nine persons (five female) with history of stroke
within four months The participants had recently been discharged from a stroke
center No specific qualitative method was specified Family members
participated in the interviews in five cases One of three categories of data
analysis Responsible and Implicated concerned the onset of stroke but the
amount of these data was limited The authors stated that the participants gave
detailed descriptions of stroke onset and described their feelings thoughts and
actions surrounding symptom onset which included consulting someone close to
them but the authors of this report provided little data to support these
statements The majority of participants decided to seek medical care on their
own and some participants with severe symptoms immediately sought help while
others waited for several days to obtain medical consultation
Summary
Seven qualitative studies and one mixed‐method study were found in which
data was reported about the experience of stroke onset Stroke onset was
revealed as a shocking event (Doolittle 1991 Kvigne amp Kirkevold 2003) but also
one in which symptoms were minimized (Faircloth et al 2005) Feelings of loss of
control and perceptions of the body as passive and objectified emerged in these
accounts (Doolittle 1991) Individuals in these studies both consulted with other
people and tried to hide their symptoms (Eaves 2000 Zerwic et al 2007) The
53
people consulted by the affected individual sometimes conferred with other
people about what to do (Eaves 2000) The tendency to wait at home and not
seek immediate care was described by participants in several studies (Eaves
2000 Olofsson et al 2005 Zerwic et al 2007)
Studies on Hospital Arrival Time
The quantitative literature on the factors associated with arrival time at the
hospital after stroke onset is summarized according to (1) demographic and
clinical characteristics (2) cognitiveperceptual factors (3) knowledge of stroke (4)
interpersonal interactions and (5) mode of transportation to the hospital The
details of these studies are presented at the end of this section in Table 3
Demographic and clinical factors associated with arrival time
Age marital status education and employment were not consistently
associated with arrival time There was evidence from several studies that women
arrived significantly later at the emergency department after stroke onset
compared with men (Barr et al 2006 Mandelzweig et al 2006 Menon et al
1998) and other studies either found trends toward later arrival in women that
that did not reach statistical significance or no gender differences in arrival time
Several analyses (CDC 2007b Kothari et al 1999 Lacy et al 2001) found that
blackAfrican Americans had later arrival to the emergency department compared
to white persons but other studies did not report this association There was little
literature on arrival time for Hispanics and other ethnic groups
54
The literature was indicative that greater severity of stroke (Agyeman et al
2006 Bohannon Silverman amp Ahlquist 2003 Chang et al 2004 Derex Adeleine
Nighoghossiam Honnorat amp Trouillas 2002 Goldstein Edwards amp Woods 2001
Jorgensen et al 1996 Kimura et al 2004 Smith et al 1998 Turan et al 2005
Wester Radberg Lundgren amp Peltonen 1999) hemorrhagic stroke (Fogelholm
Murros Rissanen amp Ilmavirta 1996 Lacy et al 2001 Smith et al 1998 Yu et al
2002 Wester et al 1999) speech disturbances (Kimura et al 2004 Palomeras et
al 2008 Pandian et al 2004 Wester et al 1999) and alterations in levels of
consciousness (Derex et al 2002 Fogelholm et al 1996 Igushi et al 2006
Jorgensen et al 1996 Kimura et al 2004) were associated with earlier arrival
Not all studies found a relationship between type of symptom and arrival time
Previous stroke or TIA co‐existing medical conditions and smoking were not
consistently associated with arrival time
Perceptual and cognitive factors
Attributing symptoms to stroke was associated with earlier arrival in the
literature (Barr et al 2006 Iguchi et al 2006 Mandelzweig et al 2006 Williams
Rosamond amp Morris 2000 Zerwic et al 2007) Predictors of attributing
symptoms to stroke were motor dysfunction and history of cerebral infarction
(Iguchi et al 2006) and male gender (Williams et al 2000) The percentage of
persons who reported that they attributed symptoms to stroke varied by study
and ranged from about one‐third (Bohannon et al 2003 Williams Bruno Rouch amp
55
Marriott 1997) to one‐half (Williams et al 2000) About one quarter (24) of 87
persons diagnosed with a stroke or transient ischemic attack (TIA) attributed their
symptoms to a cause other than stroke and the same percentage did not attribute
their symptoms to any cause (Williams et al 2000) Although people with a
previous history of stroke were more likely to attribute their symptoms to stroke
they did not arrive earlier at the emergency department than people with no
previous history of stroke (Williams et al 1997)
The perception that symptoms were severe or feeling a sense of urgency
about symptoms predicted earlier arrival (Barr et al 2006 Mandelzweig et al
2006 Palomeras et al 2008 Rosamond Gorton Hinn Hohenhaus amp Morris
1998) Feeling a sense of control over symptoms was significantly associated with
later arrival and women were 5 times more likely compared with men to report
feeling a sense of control over their symptoms (Mandelzweig et al 2006) The
decision to take a ldquowait and seerdquo approach in response to symptoms was reported
in several studies (Barber et al 2001 Barr et al 2006 Mandelzweig et al 2006
Yu et al 2002)
That persons in the previous studies reported attributing symptoms to
stroke presumes prior knowledge of stroke symptoms Several studies examined
knowledge of stroke symptoms among persons hospitalized for stroke and the
association between reported prior knowledge of stroke and arrival time About
half of persons admitted for stroke were able to name one stroke symptom (Derex
56
et al 2002 Zerwic et al 2007) Persons age 65 and older were significantly less
likely than younger persons to know a symptom of stroke (Kothari et al 1997
Williams et al 1997) No association was found between arrival time and
knowledge of stroke symptoms in persons presenting to the emergency
department with symptoms suggestive of stroke (Kothari et al 1997 Williams et
al 1997) An obvious limitation of these studies in that participants were asked to
report knowledge of the very symptoms they had just experienced and which
were the recent object of medical evaluation and diagnosis
To place these results in context the results of population surveys
indicated that stroke awareness in the United Stated has increased since the
approval of t‐PA in the mid‐1990s For example the percentage of persons able to
name at least 1 symptom of stroke in open‐ended questioning increased from
57 in 1995 to 70 in 2000 (Schneider et al 2003) Men black persons and
people greater than age 75 and younger than age 35 were least likely to correctly
name at least one symptom of stroke in 2000 (Schneider et al 2003) White
persons women and persons with more education were more likely to indicate
awareness of individual stroke symptoms than blacks or Hispanics in the 2005
Behavioral Risk Factor Surveillance System (BRFSS) (CDC 2008) Almost 40 of
respondents in the BRFFS incorrectly identified sudden chest pain or discomfort
as a symptom of stroke (CDC 2008)
Regarding womenrsquos knowledge of stroke younger women (age 25‐34)
57
were significantly more likely to report feeling ldquonot at allrdquo informed about stroke
compared with women older than age 45 (Ferris Robertson Fabunmi amp Mosca
2005) More Hispanic women (32) felt ldquonot at all ldquoinformed about stroke
compared with white (19) and black (20) respondents (Ferris et al 2005) A
recent survey found that that fewer than 35 of women with at least one risk
factor for stroke recognized vision changes dizzinessbalance problems and
confusion as warning signs and a higher percentage (70) knew that
weaknessnumbness and trouble talking could indicate a stroke (Dearborne amp
McCullough 2009)
A salient issue in interpreting studies that examine the association of
cognitiveperceptual factors and arrival time is the effect of stroke on the ability
to process information make decisions and take action It is impossible to
definitively know the cognitive state of many individuals at stroke onset but
objective measures of symptom severity give us at least some insight into this
issue
A minority of persons (8 or less) with stroke are found either
unconscious or in a state of collapse (Barber et al 2000 Wester et al 1999) and
a minority (20) had reduced level of consciousness upon admission (Kimura et
al 2004) In several large samples of persons with ischemic stroke mean scores
on a widely used stroke severity scale were in the moderate range (Kimura et al
2004 Rundek et al 2000 Turan et al 2005) Schroeder Rosamond Morris
58
Evenson and Hinn (2000) were able to conduct interviews with the majority
(75) of 559 persons with symptoms suggestive of stroke in the emergency
department These results are suggestive that a substantial number of persons
with ischemic stroke may have retained the ability to call for help but they do not
allow an accurate assessment of how evolving damage to brain tissue may have
affected perception evaluation and response to symptoms
Social factors
The majority of persons were at home at the time of stroke onset (Mosley
Nicol Donnan Patrick amp Dewey 2007 Dicarlo et al 2006 Rosamond et al
1998) and both living alone (Derex 2002 Casetta et al 1999 Kothari et al
1999 Jorgensen et al 1996) and being alone when symptoms began (Barr et al
2006 Wester et al 1999) were predictive of later arrival at the emergency
department People who first noticed their symptoms at work arrived at the
hospital earlier than persons who had their stroke at home most likely due to the
proximity of other people (Barsan et al 1993) People who first contacted
someone other than a medical provider about their symptoms had a shorter
median arrival time than persons who first called their physician (Barr et al
2006 Wester et al 1999)
Derex et al (2002) reported that stroke symptoms were first recognized
by the person having the stroke 43 of the time and by someone else 44 of the
time The odds of arriving at the emergency department within three hours of
59
symptom onset were significantly greater when someone else first identified the
problem (Derex et al 2002 Rosamond et al 1998) The decision to seek medical
care for stroke symptoms was made by someone other than the person with
symptoms 58 (Maze amp Bakas 2004) and 66 (Zerwic et al 2007) of the time
People who reported that they were advised by another person to seek medical
help arrived earlier at the emergency department than persons who did not
receive this advice (Kothari et al 1999 Mandelzweig et al 2006) Half of the
individuals who were with someone who developed stroke symptoms called
someone else for advice (Mosley et al 2007)
Mode of transportation to the hospital
About half of all persons with stroke in the US arrive at the hospital by
ambulance (CDC 2007a Lacy et al 2001 Morris et al 2000) Transport to the
hospital by EMS was consistency associated in the literature with earlier hospital
arrival (Agyeman et al 2006 Deng et al 2006 Derex et al 2002 Iguchi et al
2006 Kimura et al 2004 Kothari et al 1997 Palomeras et al 2008
Mandelzweig et al 2006 Maze amp Bakas 2004 Morris et al 2000 Rosamond et
al 1998 Williams et al 1997) whereas transport to the hospital by family or
friends increased the odds of arriving at the hospital 3 or more hours after
symptom onset (Zweifler Mendizabal Cunningham Shah amp Rothrock 2002) The
odds of arrival by ambulance increased with advancing age in persons reporting a
greater sense of urgency about their symptoms and when someone other than
60
the affected person first noticed the symptoms (Schroeder et al 2000) Schroeder
et al (2000) also found that person who lived alone and those who reported
previous negative experience with physicians or hospitals were less likely to use
EMS
People having a stroke rarely made the call to emergency services
themselves (Mosley et al 2007 Wein et al 2000) An analysis of audiotapes of
calls to EMS requesting medical assistance for stroke revealed that in 46 of the
cases the caller was the adult son or daughter of the affected person (Mosley et al
2007) Half (52) of calls to EMS were made within 1 hour of symptom onset and
predictors of these rapid calls were problems with speech a family history of
stroke and the patient being with another person at the onset of symptoms
(Mosley et al 2007) Mosley et al (2007) also found that the majority of persons
(56) who were contacted by phone and told about the symptoms traveled first
fected personrsquos home to assess the situation before calling EMS to the af
able 3 T Studies of Factors Associated with Arrival Time
ear AuthorY Factors Associated
n Country
Desig
Prospective
a Sample b with Later Arrival c d e
61
Agyeman et al 2006
d Switzerlan
N = 648 827 IS
35(38)
M 62plusmn132Female
LSS 1st stroke
Barr et al2006 Australia
Cross‐sectional Structured interview Record
N = 150 75 IS M 70plusmn13
Female Not appraising symptoms as serious Other people not taking
62
review Female102(32) action Bohannon et al
States
2003United
Prospective Structured interview
N = 64 IS M 70
Female 33(52)
LSS No previous stroke
CDC
2007 United States
Retrospective oke data from str
registry
n = 7901with rrival known a
time
African‐American No EMS
Caset1999
ta et al
Italy
Prospective N = 760 79 IS
12) M71plusmn065
le 91(Fema
Living alone LSS Greater extent of motor impairment
Chang et al 2004
Taiwan
Prospective Structured Interview
N = 196 IS
0(408) M 65
8Female
Age 65 + LSS
Derex e2002
t al
France
Prospective Structured Interview
N = 166 84 IS
9(42)
M 63plusmn13Female 6
Living alone Male No EMS
Fogelholm et al 1996 Finland
Retrospective database review
N = 363 75 IS M 70(119)F
M (55)
M65(128) 0Female 20
Ischemic stroke versus hemorrhagic
Goldstein et
s al 2001 United State
Prospective N = 506 IS 71(53)
M 655plusmn1Female 2
LSS
Iguchi 2006
et al
Japan
Prospective Structured
cord interview Rereview
N = 130 82 IS
376) M 68
9(Female 4
No stroke attribution No altered level of consciousness
Jorgensen al 1996
et
Denmark
Prospective N = 1059 77 IS
) M74
(53Female 564
LSS Living alone
Kimura2004
et al
Japan
Prospective Structured Interviews
N = 15831 IS M70plusmn115
126(38) Female 6
LSS No EMS history of stroke reduced LOC
isturbance or eakness
speech dmotor w
Kothari et al 1997 United States
Structured Interview Record review
N = 163 M65plusmn13 Female 81(50)
No EMS
63
Kothari et al 1999
tes United Sta
Retrospective record review Structure interview
N = 151 92 IS
) M 66plusmn13 Female 76(50
African‐American No EMS Living alone
Lacy et al 2001 United States
Prospective N = 55373plusmn13
IS M
Female 292(53)
No EMS Age younger than 55 African American
Mandelzweig et al 2006 Israel
Structured interview Record review
N = 209 IS 618plusmn12 emale 64(31) MF
Female Perceiving control over symptoms Not perceiving symptoms as severe No advise to get help No EMS
Menon et al 1998
United States
Retrospective record review
N = 241 IS M 64plusmn13Male
Female 31(54)
M65plusmn151Female
Female No EMS Persons with a primary care physician
Palomeal 200
ras et 8
Spain
Prospective Structured Interview
N = 292 77 IS
17 (49)
M 745plusmn1Female 143
Not perceiving symptoms as emergency No EMS
Pandian et al 2006 India
Prospective Structured Interview
N = 147 4 (33)
M 597plusmn1Female 48
Absence of aphasia
Rosamond et al
s 1998 United State
Prospective Structured interview
N = 152 M 68plusmn15
(56) Female 85
Not perceiving symptoms as urgent No one else
blem identified pro
Turan et al
s 2005 United State
Retrospective record review
N = 409 IS
(56) M 69
le 229 Fema
LSS No EMS
Smith et al
1998 United States
Retrospective record review
N = 1895 IS
0 (47) M 66 Female 89
Problems with ADL Impaired vision unsteadiness headache
Wester e1999
t al
Sweden
Prospective Structured Interview
N = 329 765 IS
38 (42) M 73 Female 1
Ischemic vs hemorrhagic Mild symptoms Alone at
id not contact No EMS
onset Danyone
Williams et al 1997 United States
Prospective Structured interview
N = 67 96 IS M 64 Female 28(41)
No EMS
Williams et al2000
tates
United S
Prospective Structured interview
N = 87 IS M 68
6 (52) Female 4
Not attributing symptoms to stroke or attributing
symptoms to anothercause
Yu et al 2002 Philippines
Prospective Structured
d interview Recorreview
N = 259 63 IS
1(43)
M 61plusmn135le 11Fema
No LOC headache or vomiting
Zerwic et al 2007 United States
Cross‐sectional Structured and Unstructured interviews
N = 38 IS M 62
(68) Female 26
Non‐motor primary symptom No EMS
Zweifler et al 2002 United States
Prospective amp retrospective
M69plusmn14 Female 525(52)
familyfriends Asleep at stroke onset
Multi‐center N = 1010 Transport to hospital by
a In prospective studies data included demographics medical history stroke typesymptoms stroke severity time of arrival b N ischemic stroke (IS) mean age in years amp standard deviation (Mplusmn) numberand percent ( ) female type of stroke c The defin ies In most studies late arrival ition of late arrival varied between studwas defined as greater than either 2 or 3 hours after symptom onset d Factors predicting delay in multivariate analysis e
p
Less stroke severity (LSS) on an instrument used to measure clinical status of ersons with stroke
64
Summary
The quantitative literature on the early symptom experience of stroke
consisted primarily of studies in which the association between various factors
and arrival time was examined There was some evidence that women arrived
later at the hospital than men More severe symptoms were associated with earlier
arrival and people who were transported to the hospital by ambulance arrived
earlier than people who arrived by other means Persons who attributed their
symptoms to stroke felt symptoms to be serious or had a sense of urgency about
symptoms arrived earlier to the emergency department than persons who did not
65
have these characteristics (Palomeras et al 2008 Rosamond et al 1998 Williams
et al 2000) Most often someone other then the affected individual called EMS
Few studies looked at gender differences in the cognitive or behavioral factors
associated with arrival time
Summary of Chapter Two
Six areas of the literature were reviewed to provide a foundation to
understand womenrsquos early symptom experience of ischemic stroke stroke in
women stroke symptoms theoretical approaches to symptom experience
studies of womenrsquos symptom experience using a phenomenological perspective
qualitative studies of early stroke and studies on hospital arrival time The results
of this review supported the need for further research on womenrsquos early symptom
experience of ischemic stroke Gaps in the literature regarding womenrsquos
perception evaluation of and response to symptoms of ischemic stroke were
identified The existing literature does not fully describe womenrsquos thoughts
feelings behaviors and interpersonal interactions during the time between
symptom onset and emergency department arrival There also was little sense of
the temporal dimension of the events and actions occurring subsequent to stroke
onset Greater understanding of womenrsquos early symptom experience of ischemic
stroke is important because this knowledge may be useful in future stroke
education efforts
Chapter Three Methodology
The methodology for a qualitative investigation is derived from the purpose
of the study (Morse amp Field 1995) The purpose of this study was to examine
womenrsquos early symptom experience of ischemic stroke with the specific aim to
create and then compare narrative accounts of the time from symptom onset to
admission to the emergency department The methodology that guided this
investigation was narrative inquiry (Polkinghorne 1988) This methodology was
chosen because the phenomenon of concern in this study has a strong temporal
dimension and narrative methodology is well suited to examine time‐bounded
experiences and episodes in a personrsquos life (Blakley 2005 Polkinghorne 1995) A
qualitative design consisting of interviews field notes and within and across case
analysis of the data was used to carry out the purpose of the study This chapter
describes the philosophical underpinning of narrative inquiry the research
methods for the study and issues concerning the trustworthiness of the results
Philosophy
Several philosophical perspectives underlie Polkinghornersquos (1988)
narrative methodology for human science research Among the philosophies
formative to Polkinghornersquos methodology were the works of Heidegger (1962)
Merleau‐Ponty (1962) Ricoeur (1979 1981) and James (1950) These
philosophers respectively contributed to Polkinghornersquos ideas about the role of
time language human action and self‐identity in narrative expression
66
Heidegger (1962 pp 422‐426) rejected the traditional view of time as
linear and instead saw time as multilayered and consisting of three dimensions
within‐time‐ness historicality and temporality ldquoWithin‐timenessrdquo organizes
objects of meaning to us including tasks we want to accomplish This dimension of
time is concerned with the ldquoeverydaynessrdquo of human existence in which time is a
particular way of being in the world In this way of being Dasein (Heideggerrsquos term
for an entity who possesses awareness) locates events in time in relation to the
ldquonowrdquo The second level historicality expands the concept of time from the
everyday ordering of existence to time as a sequence of events between birth and
death Time is experienced as a ldquoback and forthrdquo between the past the ldquoeveryday‐
present‐at‐handrdquo and what is yet to be The awareness of past experiences is a
constituent part of Dasein who maintains ldquoselfsamenessrdquo across the continuum
from past to future For Heidegger the experience of time is ultimately bounded by
the finitude of death In the third level of time the past (ldquohaving beenrdquo) the
ldquomaking‐presentrdquo and the future (ldquocoming towardsrdquo) are united
Ricoeur (1979) saw narrative as the ldquomode of discourse through which the
mode of being which we call temporality or temporal being is brought into
languagerdquo (p 17) The primary way in which temporality is expressed in narrative
is by means of the plot which is the organizing structure of a narrative Within the
plot events occur ldquoinrdquo time which Ricoeur related to Heideggerrsquos (1962) concept
of ldquowithin‐timenessrdquo Because time is a force shaping events narrators must
67
ldquoreckon with timerdquo and through this process events become meaningful Ricoeur
related Heideggerrsquos second level of time historicality to the retrospective
gathering together of past events that occurs in narrative Narrative time is
experienced as something that has already happened Ricoeur drew on Heideggerrsquos
idea of repetition to advance the idea that through narrative the past is retrievable
through memory reversing the usual flow of time
Ricoeur (1981 pp 203‐209) described several propositions about human
action in narrative First he distinguished the meaning of an action from the event
of the action Human action is propositional in the same way as a text ndash it is not
fixed and is subject to interpretation Second actions become ldquodetachedrdquo from
their agent and have consequences that are sometimes unintended Ricoeur
likened this aspect of human action to speech in that the speaker is present to his
speech act yet it ldquoescapesrdquo from him Third the meaning of an action goes beyond
itrsquos relevance in the situation in which it occurred Thus the meaning of an action
may transcend the context in which it was produced and have relevance beyond
that context Lastly Ricoeur says that human action is an ldquoopen workrdquo in that the
meaning of an action is subject to interpretation by others both at the time of the
act and in the future at which point the act becomes the past
Polkinghorne (1988) adopted Jamesrsquos (1950) view that self‐identity is
constructed over the course of a lifetime as opposed to something pre‐formed
within a person Self‐identity is comprised of the ldquomaterial selfrdquo stemming from a
68
personsrsquo awareness of his or her body and extensions of that body such as
clothing or a home a ldquosocial selfrdquo derived from shared social norms and the image
a person thinks others have of himher and a ldquospiritual selfrdquo having to do with a
personrsquos awareness of their temperament and disposition (James 1950)
Polkinghorne likened the ongoing development of self‐identity to the manner in
which narrative organizes temporal events in peoplersquos lives The self was seen by
Polkinghorne as ldquoa temporal order of human existence whose story beings with
birth has as its middle the episodes of a lifespan and ends with deathrdquo (p 152)
Merleau‐Ponty (1962 pp 209‐213) viewed language as a way that meaning
is constructed and in which words are not separate from the meaning they were
meant to express Thus language is not a representation it does not signify
objects When we communicate with another person we speak not with a
ldquorepresentationrdquo but as speakers with a certain way of being in the world In this
sense language is akin to Merleau‐Pontyrsquos view of how we live our bodies without
conscious awareness When we speak or comprehend language we do not think
about the sense of every word or visualize the words In this way thought and
expression are simultaneously constituted in language Merleau‐Ponty used the
example of reading to illustrate this idea When we read the words on the page
become lost to their meaning Language is inseparable from meaning Language
also brings awareness of our existence and the existence of others As we follow
69
the meaning of words on the page and formulate and comprehend ideas we grasp
our existence as a thinking being
Methods
The methods for this study consisted of the strategies used for participant
selection and data collection and management The procedures for the protection
of human subjects also are described in this section
Participant selection strategies
This section describes the procedures that were used to select the
participants for this study The procedures for participant selection included the
inclusion criteria and recruitment methods The characteristics of the sample are
described is this section
Sample selection
The aim of sampling in qualitative research is to identify individuals who
can best contribute to the research project based on the purpose and conceptual
framework of the study and who can provide a rich description of the phenomenon
under investigation (Morse amp Field 1995) Therefore participants for the
proposed study were to be selected purposefully and selectively Purposeful
sampling means that participants are selected according to pre‐established criteria
(Holloway amp Wheeler 2002) The aim of selective sampling is to reflect differences
in participantsrsquo experiences in order to understand how diverse factors culminated
in a similar end point (Lincoln amp Guba 1985) Of particular relevance for the
70
practice implications of this study were differences in the amount of time that
elapsed between symptom onset and admission to the emergency department
among the participants When recruiting the sample it was the researcherrsquos
original intent to select women with different arrival times However half of the
women who expressed interest in the study did not meet inclusion criteria and the
sample consisted of all the women who met the inclusion criteria and were able to
participate in an interview
The inclusion criteria for the sample consisted of women who were age 21
and older with physician or nurse‐practitioner verified ischemic stroke could be
interviewed within one year of the diagnosis of stroke lived in Texas in a private
residence or an extended care or rehabilitation facility understood and spoke
English and had the mental competence to give informed consent Twenty‐two
women contacted the researcher to express interest in participating in the study
Eleven of these women did not meet inclusion criteria The reasons that these
women were not eligible for the study were that the stroke occurred more than
one year ago (6) no memory of the period of time under study (1) TIA (2)
hemorrhagic stroke (1) or did not speak English (1) The researcher was unable to
re‐establish contact with one woman who expressed interest in the study
Fortunately there was a wide range of arrival times in the remaining ten women
who volunteered for the study and met the inclusion criteria
71
The phenomenon of concern for this study was womenrsquos early symptom
experience of ischemic stroke Physician or nurse‐practitioner verification of the
diagnosis and date of ischemic stroke was obtained prior to the first interview The
decision to interview participants within one year of their stroke was made to
allow time for women to reflect on their experience yet not for such a long period
of time to have elapsed that the details of stroke onset may be lost This is
admittedly an arbitrary time frame in that a narrative captures the meaning of
events for an individual at the time the story is told (Polkinghorne 1995)
The decision to include only women in this study was reflective of the
researcherrsquos interest in womenrsquos health issues and the fact that some researchers
have documented that women may delay longer seeking help for stroke symptoms
than men which has implications for womenrsquos treatment options Also women
have different experiences of their bodies throughout their lives than men due to
physiological differences and social context (de Beauvoir 1974) which may be
reflected in their early symptom experience of stroke A study with only female
participants enabled the researcher to consider the contribution of a womanrsquos
gender to the phenomenon under study
Sample size
Qualitative researchers often use the concepts of saturation and
redundancy which refer to the point at which no new information is yielded from
the analysis of data as an indication that data collection may cease (Morse amp Field
72
1995) These criteria are appropriate to use when the data are analyzed
thematically a process that consists of identifying common elements across the
data and developing these elements into categories or themes (Morse amp Field
1995) However in this study an analytic method that keeps each individualrsquos
story intact was employed Saturation and redundancy are not applicable with this
form of narrative analysis (Holloway amp Freshwater 2007)
Steeves (2000) suggested that researchers employing hermeneutical
phenomenological (HP) methodology may look to studies using similar methods
when deciding upon sample size Narrative Inquiry has similarities with HP
methodology in that both are interpretive methods that place emphasis on the
meaning of human experience Therefore the researcher determined sample size
based on previous studies using Polkinghornersquos (1995) within and across case
method of narrative analysis Researchers using this method of data analysis
reported sample sizes ranging from four (Dole 2001 Mcilfatrick Sullivan amp
McKenna 2006) to ten (Kelly amp Howie 2007) An examination of these studies
revealed that rich and meaningful data was generated with small samples through
in‐depth interviews with participants who have a range of experiences related to
the topic under study Therefore a sample size of 10 was set for this study The
researcher interviewed nine women were met the inclusion criteria the tenth
women who met inclusion criteria and agreed to participate and for whom the
73
researcher received verification of ischemic stroke developed medical problems
and was unable to be interviewed
Sample characteristics
A Background Information Form (Appendix B) was used to record
information about the characteristics of the participants In addition to
demographic information (age raceethnicity marital status education and
employment) the Background Information Form contained information about the
type of symptoms present at stroke onset the setting in which the symptoms were
first noticed (eg home or work) risk factors for stroke whether other people
were present at the onset of symptoms and the estimated time from symptom
onset to emergency department arrival Some of the information for the
Background Information Form such as a participantrsquos age and the date of her
stroke were obtained during the initial contact with the participant Other
information on the form was gathered during the data collection process
Selected characteristics for each of the nine women who took part in the
study are presented in Table 4 The age of the women ranged from 24 to 84 years
The raceethnicities reported by the participants were Caucasian (4) Hispanic (3)
mixed race (Native AmericanCaucasian) (1) and African American (1) Three of
the women were married one woman was widowed one woman was separated
and two women each reported that they never married or were divorced Seven of
the nine participants had children Of the seven women who had children all the
74
children were adults with exception of the children of the 34 year old participant
who were in elementary and middle school The educational levels reported by the
participants ranged from 11th grade to the graduate level Five of the women
reported ldquosome collegerdquo and one woman had a graduate degree Regarding
employment at the time of their strokes seven women worked outside the home
one woman was self‐employed and one woman was a homemaker Of the eight
women who were employed at the time of their strokes two had returned to work
at the time of their participation in the study and the other six women reported
that they were unable to return to work due to stroke‐related disability
Only one woman in the sample did not report risk factors for stroke The
other participants each reported at least one health condition andor factor that
placed them at increased risk for stroke The risk factors reported by the sample as
a whole included smoking either by itself or in combination with hormonal
contraception hypertension diabetes atrial fibrillation family history of ischemic
stroke or TIA and previous stroke
75
Table 4
Selected Sample Characteristics
A nicity Name ge
Raceeth Education Stroke Risk Factors
e Ellen 41 Caucasian Some colleg Diabetes Smoking
Jane 76 Caucasian 12th grade Previous HX of Stro
ne
ke Hypertension
igraiAtypical mKenzie 57 Native American
Caucasian Masterrsquos Degree
Hypertension
ke Diabetes Family HX of Stro
Lisa 34 Caucasian Some college None reported Louise 86 Caucasian 11th grade Atrial fibrillation
Hypertension Maria 54 Hispanic Some college Family HX of Stroke
Hypertension Diabetes
Natalie 56 African American Some college Hypertension Diabetes Smoking
Teresa 50 Hispanic GED Family HX of Stroke Smoking
Tiffany 24 Hispanic Some college Smoking + hormonal contraceptive
All nam
76
es are pseudonyms
Every participant in the sample reported at least one of the classic
AHAASA symptoms of stroke For the sample as a whole these symptoms
including one‐sided weakness or numbness of the arm andor leg facial weakness
dizziness or trouble with balance problems with speech and vision disturbances
Six women reported prodromal symptoms including vertigo loss of balance
tiredness arm pain head pain tingling and difficulty speaking Of these symptoms
two are not listed in AHAASA public education materials tiredness and arm pain
There was a great variation with regard to the amount of time between when a
participant first noticed symptoms and her arrival at the emergency department
This period of time ranged from less than one hour to one month In addition one
participant reported noticing symptoms as far back as seven or eight months prior
to her diagnosis One woman in the study received t‐PA Table 5 presents
information about the type of acute and prodromal symptoms reported by each
participant her estimated time from symptom onset to emergency department
nd if a woman received t‐PA arrival a
Table 5
Symptoms and Hospital Arrival Time
t ‐Name Ellen
Acute odromal Symptoms
77
Pr
Dizzy
Hospital Arrival 17 hours (prodromal symptoms for1 month)
PA
no Symptoms
Dizzy All over weakness R arm numbtingly
fficulty Vision disturbance
die
Motor coordinationch disturbanc^ Spee
Jane Vision disturbance Dizzy Tiredness
None reported 1 hour no
Kenzie Vertigo Tiredness
y L arm amp leg weaktingl
Vertigo
Tiredness
nceng
Vision disturbaProblems walki
7 days no
Lisa Vision Disturbance ce Memory disturban
Numb hand R arm amp leg weak
y
R side of body numbSkin hypersensitivitDifficulty speaking
None reported 9 hours no
Louise L arm tinglynumb up L side face ldquodrawingrdquo
Legs felt weakSpeech disturbance^
^ L arm weak
L hand numbtingly Problems speaking
2 hours no
Maria R arm weakness (transient) Headache
amp leg weak R armR arm numbtingly
sensitivity Itchy Skin hyper
None reported 6 hours no
Natalie Tiredness Headache R arm amp leg weak Vision disturbance
l confusion ^
MentaSpeech disturbance
Tiredness Headache Loss of balance Reduced appetite
6 days no
Teresa Dizzy
ad Vision disturbance
e sensation in heStrang
L arm pain 6 hours no
Tiffany L arm leg amp face weak Dizzy
Head pain Less than1 hour
yes
Headache Mental confusion
All names are pseudonyms toms until she Estimated time from when a participant first noticed symp
rrived at the emergency department Symptoms noticed by someone other than the participant a^
78
Recruitment
Several methods were employed to recruit the participants Letters and
fliers explaining the study and containing the researcherrsquos contact information
were distributed at meetings of community stroke support groups to women who
had a stroke Fliers were placed at senior centers Recruitment occurred through
word of mouth and advertisement in a local newspaper Recruitment efforts took
place in several hospitals with in‐patient and out‐patient rehabilitation services In
these facilities letters were distributed to female clients with stroke by members
of the occupational therapy and physical therapy staffs The stroke coordinator at
one hospital included the recruitment materials with the information packets
given at discharge from the hospital to patients who had a stroke Recruitment
activities at the hospitals were approved by the research committees at these
facilities The recruitment materials are in Appendix A
It was important to include minority women in the sample because of the
disproportional burden of stroke on African America women The pastors and
church secretaries of two churches with predominantly African American
clientele agreed to make an announcement about the study prior to services or
distribute fliersrecruitment letters to member of their congregations who had a
stroke Notices also were placed at a community center with African American
attendees and in two beauty salons frequented by African American women
These efforts yielded one woman who enrolled in the study
Women who were interested in learning more about the study called the
researcher or returned a card included with the recruitment letter in a postage‐
paid and pre‐addressed envelope The study was discussed with each potential
participant over the phone at which time the details of participation were
explained Potential participants were given the opportunity to ask questions
about the study A phone script was used for this conversation (Appendix A) The
79
phone script included questions to assess a womanrsquos eligibility for the study such
as her age and the date and type of stroke
If a woman appeared to meet inclusion criteria and wanted to proceed with
the study arrangements were made to obtain her signature on the Authorization
for the Use and Disclosure of Protected Health Information for verification of
stroke type (Appendix A) In most instances the researcher went to the
participantrsquos home to have her sign the form and then mailed it to the womanrsquos
physician or nurse‐practitioner On two occasions the form was sent by mail to a
participant who subsequently brought it to her physician or nurse‐practitioner
during a previously scheduled appointment A postage paid pre‐addressed
envelope was enclosed with the form to facilitate response by the health care
provider After receiving verification of the diagnosis of ischemic stroke the
participant was contacted and the first interview was scheduled
Human subjects
The responsibilities of a narrative inquirer to a participant begin before a
potential participant makes contact with the researcher and continue after the
study is completed (Huber Clandinin amp Huber 2006) These responsibilities
include designing a study in which efforts are made to minimize potential harm to
participants protect participantsrsquo privacy and maintaining confidentiality (Hewitt
2008) The proposal was sent to the Departmental Review Committee (DRC) of the
School of Nursing and the Institutional Review Board (IRB) at the University of
80
Texas at Austin for review Approval was received Participant recruitment did not
take place until the study has been approved by the DRC and IRB The IRB
approval form is in Appendix A
Oral and written informed consent was obtained from each participant at
the time of the first interview before the interview commenced The consent
process included a thorough explanation of the purpose of the study and what
participation in the study would entail The participants were informed that taking
part in the study was voluntary and they were assured that they could withdraw
from the study at any time without providing an explanation they may terminate
an interview at any time if for any reason they do not want to continue and they
were under no obligation to answer all of the researcherrsquos questions and may
refuse to do so without adverse consequences The researcher explained that the
interviews would be audio‐recorded and only the researcher and a transcriptionist
would have access to the recordings The Informed Consent Document is in
Appendix A
Participants were informed of procedures to guard their privacy and
maintain confidentiality They were told that a pseudonym would be used on all
written records associated with the study including the transcripts of the
interviews and that identifying information (name address phone number and
email address) would be kept in a locked file drawer to which only the researcher
had access Participants were informed that all identifying information and the
81
digital recording would be destroyed three years after the completion of the study
This added to confidentially in that the research participants knew when they no
longer could be linked to the study
Participants received a gift card for a national chain store in the amount of
$15 for the first interview and $10 for the second interview This remuneration
was not considered as coercive Handwritten notes were sent after each interview
to express appreciation to the participants for their willingness to participate in
the study
Data management
The data management strategies for this study were the procedures guiding
how the data was collected handled and analyzed Data collection entailed
interviewing the participants obtaining demographic information and taking field
notes Data handling consisted of the transcription of the audio recordings and
how the data were stored and made secure The procedures used to analyze the
data consisted of the within and across cases analysis This section describes the
procedures for data collection handling and analysis
Data collection
The method of data collection is derived from the purpose of the study and
the philosophical perspective underlying the research methodology (Robinson amp
Thorne 1988) In‐depth unstructured interviews were deemed the most
appropriate way to gather data to achieve the purpose and aim of the study This
82
type of interview allowed the researcher to explore the nature of the lived
experience of stroke onset and gain multiple perspectives on this experience
(Johnson 2002)
Data collection took place over a nine month period from March 2009 ndash
December 2009 The interviews took place at a mutually acceptable setting that
allowed sufficient privacy In all but two cases the interviews took place in the
participantrsquos home One woman was interviewed in the assisted livingextended
care facility she entered after discharge from the hospital Another participant
chose to be interviewed at a coffee shop
Qualitative research interviews are ldquonegotiated understandingsrdquo between
the researcher and participant (Lincoln amp Guba 1985) This process begins with an
introductory statementquestion which functions to set the parameters of the
investigation (Holstein amp Gubrium 1995) and establishes a shared task and
purpose (Mischler 1986) According to Mischler (1986) the introductory
questionstatement starts ldquoa circular process though which its meaning and that of
its answer are created in the discourse between the interviewer and respondent as
they try to make continuing sense of what they are saying to each otherrdquo (pp 53‐
54) The introductory statementquestion for this study was ldquoI am interested in
hearing the story of your stroke from the first moment you realized that
something was happening until you were admitted to the emergency departmentrdquo
83
After the introductory statement I attempted to provide space for an
uninterrupted flow of discourse to maintain the gestalt of the unfolding story
(Jones 2004) Sometimes a participantrsquos response to the introductory statement
resulted in multiple pages of interrupted text during which I acknowledge my
continued attention to the story with an ldquoMm hmmrdquo Brief questionsstatements
such as ldquoIn what wayrdquo or ldquoTell me about thatrdquo served as prompts when necessary
Only after it appeared that the participant has concluded her story did I take a
more active role in the interview by asking questions In several cases the
responses to the introductory statement inviting a participant to tell the story of
her stroke were quite brief sometime as short as four lines On these occasions
open‐ended questioning began sooner Examples of interview questions are in
Appendix B
A second interview was scheduled approximately two to six weeks after the
initial interview This interval provided time for both the participant and
researcher to reflect upon the previous exchange A follow‐up interview gave the
participant the opportunity to share further thoughts and was a time for the
researcher to gauge the participantrsquos reaction to the initial interview (Mischler
1986) Multiple interviews also may enhance the participantsrsquo confidence and trust
in the researcher and increase their degree of comfort disclosing thoughts and
feelings (Seidman 1991) During the second interview several participants said
that they had remembered things about their experiences that they wanted to
84
share with the researcher It was also during the second interview that the
researcher brought forth questions generated in the preliminary data analysis
(Lincoln amp Guba 1985) As such the format of the second interview varied for each
participant The second interview often was an opportunity to obtain more in‐
depth descriptions of bodily experiences during early stroke
Qualitative interviewing is both a qualitative method and a social
relationship (Seidman 1991) The research relationship is fraught with the risk of
misunderstanding and even the potential for emotional harm to participants
(Hewitt 2007) The participantrsquos reaction to the gender physical appearance and
personal characteristics of the researcher may shape their responses during
interviews and their feelings about being in a research study (Seidman 1991)
Additionally the power imbalance between researcher and participant may create
feelings of vulnerability in respondents and the topic under discussion may
generate feelings of distress Following Hewittrsquos (2007) suggestion I attempted to
foster an atmosphere of mutuality respect and rapport with participants while
maintaining an awareness of the effect of the interview on participants The
experience of stroke onset was traumatic to varying degrees for the participants in
this study and there were times when I decided not to pursue a topic that seemed
to cause a participant distress
Regarding field notes brief notations were made during the interviews as a
reminder for follow‐up questions These notes were made as unobtrusively as
85
possible so as not to distract the narrator and to allow the researcher to
concentrate on the interview (Morse amp Field 1995) Immediately after the
interview concluded more in‐depth field notes to document observations about
the setting of the interview nonverbal behaviors (eg tone of voice eye contact
facial expressions and hand gestures) impressions about the rapport between the
participant and myself and beginning hunches about the data were created (Morse
amp Field 1995)
Data handling
Data handling concerns the storage and transcription of the digital audio‐
recordings of the interviews and the field notes The recordings of the interviews
were uploaded to the researcherrsquos personal computer which was electronically
locked when not in use and password protected The digital recordings and field
notes were transcribed as soon as possible after each interview into a Microsoft
Office Word copy file
Systematic transcription procedures are required for a sound analytic and
interpretive process (Poland 1995) Transcriptions were produced using methods
described by Morse and Field (1995) and Poland (1995) The transcriptions were a
verbatim reproduction of the interviews with the exception that identifying
information was eliminated A pseudonym was used for the participant the initial
ldquoIrdquo indicated the researcher and other people were designated by a line with their
relationship to the participant in parentheses (eg _________ (husband))
86
Expressions of emotion or changes in inflection were indicated in square brackets
[laughing] within the text and pauses were noted with dots (hellip) with each dot
indicating one second of silence Hyphens (‐) indicated when speech is broken off
mid sentence Speech that overlapped the preceding line was noted in parentheses
(overlapping) Background noises were noted in italics The transcripts were
single‐spaced with a blank line between speakers The transcriptions were
formatted with large margins to allow room for coding and researcher comments
Each transcription was checked for accuracy by the researcher by comparing it to
the digital recording of the interview
Data analysis
Data analysis consisted of the procedures that were used to accomplish the
specific aim of the study and answer the research questions Within and across
case techniques were used to analyze the data
Within case analysis
The within case analytic technique used in this study was a form of
narrative analysis described by Polkinghorne (1995) The hallmark of this form of
narrative analysis is that it does not separate the data from the case thus enabling
the researcher to capture the temporal elements of a participantrsquos story that
otherwise might be lost The overall purpose of narrative analysis is to present ldquoa
meaningful framework for organizing disconnected data elementsrdquo (Dole 2001 p
203)
87
When conducting a narrative analysis a researcher may focus upon the
content andor the form that a narrative takes (Lieblich Tuval‐Mashiach amp Zilber
1998) Content includes what happened and why and who was there and form
concerns the structure of the plot and how a story is told (Lieblich et al 1998)
Consistent with the research questions for this study the researcher focused on
what occurred and why during the period of time under study in the analytic
process However because how an individual constructs a study is important to
the meaning of the story narrative processes used by the participants when telling
their stories were included in the analysis Narrative processes are literary devises
that people use when telling stories such as a metaphor (Gubrium amp Holstein
1977) Although the type of narrative analysis used in this study attended more to
the ldquowhatrdquo and ldquowhyrdquo of the story rather than the ldquohowrdquo (Polkinghorne 1988)
attention to narrative processes was included in both phases of data analysis when
the manner in which the story was told was particularly helpful in illuminating a
particular aspect of symptom experience
The result of the within case analysis was a narrative account for each
participant that exhibited the connections between the events and actions that led
to a particular outcome (Polkinghorne 1988) which in this study was admission
to the emergency department for ischemic stroke The aim in writing the narrative
accounts was to display what happened prior to emergency department admission
and how the story unfolded in a particular context (Lieblich et al 1998) As such
88
the researcher aimed not to simply summarize the events and actions occurring
during early stroke but to provide a commentary that uncovered and clarified the
meaning of the story told by the participant (Polkinghorne 2007 p 483)
This way of presenting the findings of a narrative research study is
consistent with a narrative perspective on human existence as articulated by
Bruner (1990) Bruner (1980) asserted that all meaning is public and shared and
that ldquoour culturally adapted way of life dependshellipupon shared models of discourse
for negotiating differences in meaning and interpretationsrdquo (p 13) A collection of
stories as the product of a narrative inquiry reflects the social dimension of
narrative expression in which meanings are formed based on the audience to
whom the story is told and the broader social context in which stories were
formulated and heard (Murray 2008)
The steps that were used to produce the narrative accounts were derived
from the techniques described by Polkinghorne (1995) and Murray (2008) The
analytic process was iterative and the researcher moved back and forth between
the digital recording transcription plot outline and emerging text of the narrative
account There were seven steps in this process
1 The digital audio‐recording a participantrsquos interviews were listened to
and each transcript was read repeatedly to gain familiarity with their content
Sometimes a part of a narrative did not immediately appear related to the outcome
of the story and repeated encounters with the data allowed the researcher to
89
develop an appreciation for how that particular section of the transcript
contributed to the outcome
2 After the researcher was familiar with a transcript she began the process
of identifying elements of the plot within the story as told by a participant A plot
consists of temporally linked events and actions that individuals consider
significant to their story Labov (1972) called plot ldquothe skeleton of a narrativerdquo (p
12) Plots have a temporal dimension that delimits the beginning and end of the
story and the ordering of its events According to Polkinghorne (1988) the plot
transforms events into a whole ldquoby highlighting and recognizing the contribution
that certain events make to the development and outcome of the storyrdquo (p 18‐19)
The plot also ldquoestablishes human action not only within time but within memoryrdquo
(Ricoeur 1979 p28)
The actions of the participants and other individuals are central elements of
the plot Human action advances a story and is directed toward resolving or
clarifying a situation or dilemma (Polkinghorne 1995) In this study the actions of
the participants and others most often were in direct response to the symptoms of
stroke However sometimes the actions taken by the participant or others were in
response to the actions of another person Therefore it was important during data
analysis that the researcher did not view human action in isolation but considered
how actions contributed to subsequent actions and ultimately to arrival at the
emergency department
90
3 The transcript was coded using the letter ldquoErdquo to indicate an event ldquoAPrdquo
to indicate an action taken by the narrator and ldquoAArdquo to indicate an action by
another person in the story The notation ldquoEBrdquo was used to indicate an event
related to a change in bodily function These notations were made in the left
margin of the transcript For the purpose of coding Balrsquos (1985) definition of an
event as ldquothe transition from one state to another staterdquo (p 13) was adopted
Action was defined as the process or condition of acting or doing or the exertion of
energy or influence (httpwwwdictionaryoedcom)
4 After the events and actions were identified the researcher re‐read the
transcripts for supporting data elements Supporting data elements were
sentences andor phrases in the transcript that provided the context for the events
and actions Data elements often had to do with the context within which stroke
onset occurred such as a womanrsquos previous ideas or experiences with illness or
what was occurring at the time of she first noticed the symptoms of stroke Data
elements were noted in the right margin of the transcript
5 The narrative processes used by the participants when telling their
stories were identified
6 A plot outline for each transcript was then constructed A plot outline is a
visual representation of a participantrsquos story on paper Each plot outline had a
temporal structure that reflected the order of events and actions leading to
emergency department admission People often order events in a story through
91
the use of the words ldquothenrdquo ldquountil thenrdquo and ldquolaterrdquo (Ricoeur 1979 p 26)
However people may not tell stories in a linear manner (Lincoln amp Guba 1985)
and the researcher sometimes had to ldquofindrdquo the next action or event in a later
section of the interview
The plot outlines contained the following features
The plot outlines were drawn on paper Actions and events were indicated
in the order in which they occurred above a horizontal line running the
width of the paper
The supporting data elements were written below the corresponding
actions and events on the plot outline Adding the data elements required
the researcher to consider how they fit into the temporal sequence of
events along the plot outline The aim of this part of the data analysis was to
account for the context in which the events and actions took place and to
establish the relationship between the data elements and events and
actions
At times there were data elements that were not applicable to a specific
action or event Those that seemed related to several actions or events were
written in a box at the bottom of the paper
The field notes were examined to determine their contribution to the story
and were incorporated into the plot outline
92
7 The final step in the within case analysis was to construct a written
narrative account of each participantrsquos story When writing a narrative account the
researcher attempted to draw together events actions and supporting data
elements into a ldquotemporal gestalt in which the meaning of each part is given
through its reciprocal relationship with the plotted whole and other partsrdquo
(Polkinghorne 1995 p 18) The researcher attempted to draw together the events
and actions in a way that explained the ending of the story
Richardson (1994) posited that writing is both a method of inquiry and a
way of knowing It is a dynamic and creative process through which social
scientists working in the qualitative tradition discover what they want to say
(Richardson 1994) Noting that writing a qualitative piece straddles the line
between art and science Sandelowski (1994) described the result as ldquoboth
representative and evocative it tells an interesting and true story it provides a
sense of understanding and sometimes even personal recognition and it conveys
some movement and tension ndash something going on something struggled againstrdquo
(p 59)
There is no prescribed format for constructing a narrative account
Polkinghorne (1988) opined that a narrative account should read somewhat like
an historical account that draws upon the recollections of someone who was at a
particular place at a particular time and had certain experiences that unfolded
through time Polkinghorne (1995) suggested criteria for narrative researchers to
93
use when crafting narrative accounts which originally were developed by Dollard
(1935) to assess life histories Relating these criteria to the present study the
researcher attempted to create narrative accounts that
Configured events into a temporal sequence The narrative accounts
displayed the beginning middle and end of the story The narrative
d accounts continually answered the question And then what happene
Considered the embodied nature of human existence A participantrsquos
experience of her body at stroke onset was understood from a
phenomenological perspective
Examined the role of other people in the events that led to admission to the
emergency department and the characteristics of the relationships between
the participant and these individuals
Described human action and elucidated the perceptions thoughts feelings
emotions and values that contributed to the actions taken by participants
during the early stroke
Reflected the historical continuity of individualsrsquo lives The awareness of
past experiences is central to a Heideggerian (1962) view of the experience
of time In some of the accounts past personal or family experiences of
illness influenced participantsrsquo evaluation their symptoms
Reflected how social context may have influenced a womanrsquos early
symptom experience of ischemic stroke Illness occurs within the context of
94
Across case analysis
A collection of narrative accounts is an opportunity to apprehend the ldquothe
differences and diversity of individuals and their storied experiencesrdquo (Kelly amp
Howie 2007 p 141) The aim of the across case analysis was to compare and
contrast the accounts in order to identify similar and dissimilar qualities and
characteristics of the experiences of the participants (Polkinghorne 1995) The
ldquocommonalities draw together the aspects of the experience that were shared by
the participants and the differences point out how the experiences varied and
related to the context in which each womans symptom experience of stroke took
placerdquo (D Polkinghorne personal communication April 28 2009) Pak (2006)
described across cases analysis the processes of identifying ldquoessential themes and
insightsrdquo in the participants stories that are then combined into a coherent whole
for discussion
Because few researchers have set forth specific procedures to conduct an
across case analysis a five step process was devised for this study
95
1 The first step in the across case analysis process consisted of reading and
re‐reading the narrative accounts in order to obtain an overall impression of the
womenrsquos experiences during early stroke
2 The second step of the across case analysis consisted of identifying
portions of the accounts relating to the three components of symptom experiences
as defined in this study perception of a symptom evaluation of the meaning of a
symptom and response to a symptom Colored highlighters were used to identify
the text in each narrative account corresponding to each component of symptom
experience A fourth color was used to identify the actions and contributions of
other people during early stroke This was done because the role of other people in
early stroke spanned all three components of symptom experience
3 Within the portions of the narrative accounts corresponding to the now
four components of symptom experience the narrative processes used by the
participants when telling their stories were identified and compared
4 The next step in the across case analysis consisted of identifying
ldquoessential themes and insightsrdquo (Pak 2006) as they related to the three
components of symptom experience In addition linkages were identified between
the various components of symptom experience
5 Once these essential themes and insights were identified the researcher
constructed a written synthesis of the similarities and difference in the narrative
accounts In this synthesis previous research was brought forth in order to
96
illustrate how the narrative accounts either supported or diverged from this
literature
Bias Reduction
Every researcher has a point of view stemming from life experiences values
and knowledge of the topic under study all of which may influence various aspects
of the research process (Lincoln amp Guba 1985) Reducing bias entails first
identifying potential sources of bias and then taking steps to reduce the effect it
may have on the study Maintaining reflectivity or ldquowakefulnessrdquo is a way for
researchers using narrative methods to recognize what they bring to the research
process and to trace how their understanding of the topic under study may change
over time (Clandinin amp Connelly 2000) Rodgers and Cowles (1993) suggested that
qualitative researchers keep a written record to document analytic decisions I
kept a research journal during this study which combined both my reflections on
the research process as well as analytic decision making The act of writing and re‐
reading entries was helpful as I worked though decisions about how to interpret
and analyze the data
Another way to be aware of and reduce bias is to involve other researchers
in the research process (Kahn 2000) A member of the dissertation committee
with research experience in qualitative methodology examined several
transcriptions corresponding plot outlines and narrative accounts to offer her
perspective on the unfolding research process This activity began early in the data
97
wed and her narrative account written
The consulting researcher pointed out instances in the interview
transcriptions where the researcher used a leading statement inadvertently
suggesting to the participant a possible interpretation of the events she was
describing The consulting researcher also discerned from the transcription of the
first interview that the researcher was hesitant to delve into areas she considered
private or personal particularly with regard to participantsrsquo relationships with
family members This observation prompted reflection on the part of the
researcher that resulted in awareness that patterns of interactions within her own
family were the source of her reluctance to ask follow‐up questions pertaining to
family relationships As a result the researcher was able to proceed with data
collection with an creased awareness of this tendency in
Trustworthiness
Because narratives are interpretations of events rather than an exact record
of what has occurred traditional notions of validity do not apply to research using
narrative analysis (Mischler 1990) Mischler (1990) proposed that the process of
validation be used to make claims for and evaluate the trustworthiness of the
interpretations derived from a narrative inquiry Validation distinguishes between
the concept of ldquotruthrdquo which assumes an objective reality and ldquotrustworthinessrdquo
which moves the validation process into the social world where scientific
98
knowledge is constructed through praxis (Mischler 1990 p 420) Thus validation
is the process whereby research activities are presented for examination by other
researchers who will decide if the conclusions reached in the study can be used as
the basis for their own work
Polkinghorne (2007) viewed validation as essentially an argumentative
process and suggested that to build the case for trustworthiness a researcher
should (1) provide evidence to support their interpretations (2) cite the evidence
(3) articulate the thought process connecting the evidence to the conclusion and
(4) provide support for the conclusion Quotations from the interviews supporting
the researcherrsquos interpretation of the data and including ldquorich details and revealing
descriptionsrdquo within each narrative account were part of the evidence put forth by
the researcher (Polkinghorne 2007) In addition the methods used to collect
manage and analyze the data were set forth so that the research community can
determ 90) ine the process through which interpretations were made (Mischler 19
As part of the validation process a researcher should indicate that they
considered alternate explanations for their interpretations (Polkinghorne 2007
Reissman 1993) This is an important component of the process of building
evidence for trustworthiness because previous research on the topic under study
and the life experiences and values of the researcher will shape interpretation
Considering alternate explanations also is a way to check for bias that may
influence the data analysis process Accordingly during the course of the study
99
and especially during data analysis the researcher attempted to remain aware of
alternative explanations for her interpretations
Alternative explanations were proposed in several of the narrative
accounts primarily when the researcher was unsure why a participant responded
to symptoms in a certain way For example because it was not clear to the
researcher why Teresa did not inform a family member who was present at
symptom onset about her symptoms two explanations for her actions were
proposed in her narrative account Providing an alterative explanation for Teresarsquos
decision not to tell a family member about her symptoms was a way for the
researcher to avoid any tendency to resolve ambiguities in the data by ldquosmoothingrdquo
the narrative accounts By ldquosmoothingrdquo the researcher meant any tendency to
choose one explanation over another when the meaning of a participantrsquos action
was unclear in aid of creating a cohesive narrative
A narrative researcher must convince readers that what she or he is
claiming about the meaning of life events for the participants is reasonable This
does not mean that the researcher must establish a high level of certainty for the
claims beyond that which can be concluded from the evidence (Polkinghorne
2007) Readers will look at the evidence and ask themselves if the researcherrsquos
interpretation adequately explained how the events under study unfolded and if
the outcome made sense given the conveyed meaning of the event Ultimately
however the persuasiveness of an argument turns not only on the evidence but
100
also on the response of the reader (Reissman 1993) ldquoThe proof for you is in the
things I have made ndash how they look to your mindrsquos eye whether they satisfy your
sense of style and craftsmanship whether you believe them and whether they
appeal to your heartrdquo (Sandelowski 1994 p 61)
Limitations of the Study
Several limitations of this study are acknowledged First the women who
volunteered to participate in this research study may possess different
characteristics than the women who did not volunteer Thus the findings of this
study may have been different if other womenrsquos stories of stroke had been heard
Also some individuals experience significant aphasia after a stroke Therefore the
experiences of women who felt they did not have the ability to communicate their
experiences were not represented in this study
Another limitation concerns the age of the participants The mean age of
women at the time of stroke in several large samples ranged from 73 years
(DiCarlo et al 2006) to 77 years (Petrea et al 2009 Reid et al 2008) The mean
age of the women in this sample was 53 and seven of the nine participants were
below age 60 The reason why a greater number of older women did not volunteer
for the study may have been due to the fact that women are more likely than men
to be discharged to an extended care facility after stroke (Dicarlo et al 2003
Holroyd‐Leduc Kapral et al 2000 Kapral et al 2005) and reside there three
months after a stroke (Petrea et al 2009) Kelly‐Hayes et al (2003) attributed
101
womenrsquos poorer outcomes after stroke to womenrsquos greater age at the time of
stroke If older women were discharged to an extended care facility more
frequently than younger women they may have been less likely to learn about the
study or their physical condition may have precluded participation in the study
Alternatively some of the younger women in the study expressed shock that they
had had a stroke which may have motivated them to share their story Had the
sample contained more women in their elder years the findings of this study may
have been different An additional limitation regarding the characteristics of the
sample was that African American women were underrepresented
A final limitation of the study concerns the methods used to analyze the
data A method of data analysis that results in ideas (themes) relevant to all the
participants may be applicable beyond the sample (Ayes Kavanaugh amp Knafl
2003) This is the reason that qualitative researchers often continue data collection
until saturation of the data is reached meaning that researchers arrive at a point in
the data analysis beyond which no new themes are developed (Morse amp Field
1995) When utilizing the within and across case data analysis methods prescribed
by Polkinghorne (1995) saturation of the data is not a goal of the analytic process
Instead researchers develop implications by comparing and contrasting the
individual narrative accounts such that the context in which each personrsquos
experience occurred is not completely lost (Polkinghorne 2007) This approach to
data analysis may limit the applicability of the findings beyond the sample
102
103
Summary of Chapter Three
Nine women were interviewed and asked to tell the story of their stroke
from the moment they first noticed symptoms until they arrived at the hospital
Narrative inquiry was the most appropriate method to carry out the purpose and
specific aim of this study because it allowed the researcher to consider the context
of the events recounted in the story the meaning of these events for the individual
and the temporal flow of the events under study (Polkinghorne 1988) In‐depth
interviews allowed participants to tell their stories in their own way and in their
own time
Data was analyzed using within and across case techniques Within case
analysis allowed the researcher to interpret each story as a whole and to identify
individual variations in each womanrsquos story This process involved examining the
connections among the events and actions that occurred during early stroke and
then creating a narrative account for each participant that reflected the context
within which the actions and events occurred and their temporal dimension
(Polkinghorne 1995) The across case analysis allowed the identification of
similarities and differences in the collection of narrative accounts (Polkinghorne
1995)
Chapter Four Within Case Analysis
The findings for this study consisted of the results of a within and across
case analysis In Chapter Four the individual narrative accounts that were created
for each of the nine participants are presented This is the within case analysis The
across case analysis is presented in Chapter Five Together these chapters provide
answers to the two research questions and explore how women experienced their
bodies during early stroke and womenrsquos thoughts feelings behaviors and
interpersonal interactions from the time of symptom onset until arrival at the
emergency department The narrative accounts are presented in the order the
articipants enrolled in the study p
104
Teresa
ldquoI knew I couldnrsquot get scaredrdquo
With the exception of our phone conversations all my interactions with
Teresa a 50 year old Hispanic mother of six adult children took place in the
covered carport behind her house On my first visit I found no doorknob on the
front door of her modest home and I noticed what appeared to be a dead bolt lock
When I received no response to my knock I went around to the backyard of the
home that Teresa shares with Juan who she refereed to during the interviews as
her boyfriend and ldquocommon lawrdquo Juan was in a serious car accident the year
before and has brain damage as a result of his injuries During the course of
spending time with Teresa I learned that she is Juanrsquos primary caregiver and until
her stroke was their sole means of financial support Now they both receive
government disability payments
For about four days before her stroke Teresa had pain in her left arm that
would ldquogo and comerdquo She described the pain as ldquospasmsrdquo and said that the pain
wasnrsquot ldquonormalrdquo She said that she had never had this type of pain before ldquoI noticed
that and I noticed itrdquo Teresa said She decided to take a ldquowait and seerdquo approach to
the pain because she thought her job working with the presses at a dry cleaner
may have been the cause of the pain Teresa said that she didnrsquot take the pain
seriously because ldquoit wasnrsquot on my shoulderrdquo and also because her arm didnrsquot ldquogo
numbrdquo She had seen television commercials advising women to go the hospital if
105
their arms were numb ldquoor somethingrdquo At the time of this study a media campaign
about stroke was taking place in the community sponsored by a hospital recently
certified as a Primary Stroke Center It may have been these advertisements that
Teresa saw When the pain ldquokept coming back more and morerdquo Teresa decided she
should go to the hospital to see a doctor ldquoButrdquo she said ldquoI had the stroke before
thenrdquo
At the time of her stroke Teresa had been quietly following her youngest
son and his girlfriend around the house and yard hoping that the argument they
were engaged in would not escalate into blows She had gotten up that morning
intending to go to the flea market and she was dressed in a skirt and blouse
Teresa was in the backyard and had just told her sonrsquos girlfriend that she should
leave when she felt something ldquopoprdquo in her head There was no pain associated
with this sensation She likened it to a cork popping and thought she had actually
heard the sound in her head It felt as though ldquosomething opened and closedrdquo
inside her head ldquoIt was like upstairsrdquo Teresa said ldquoand just falling down You
could actually feel itrdquo
After Teresa felt the popping sensation in her head ldquoeverything changed
that secondrdquo She immediately lost her sense of balance and it felt to her as though
ldquoeverything was movingrdquo Her eyes also began to move on their own ldquoMy vision it
started to move and shake go up and downrdquo Teresa said she found it difficult to
106
stay upright and it was ldquoawfulrdquo to feel so dizzy ldquoI knew I had to lay down before I
fell downrdquo she said
It did not occur to Teresa that she might be having a stroke nor did she have
an idea about what could be happening to her ldquoThere was a change I knew
something was wrong I just didnrsquot know what it wasrdquo she said Despite the fact
that her mother died of a stroke at age 49 Teresa said she thought that strokes
happened to ldquopeople in their eightiesrdquo an idea that came from things she had read
in the newspaper and ads about health screenings Despite not knowing what was
wrong ayrdquo Teresa thought it was serious because ldquoit affected [my] balance right aw
In response to awareness that something serious was happening to her
Teresarsquos first thought was that she had to remain in control ldquoI knew there was
something wrong and I tried to control myselfrdquo she said ldquoIn my mind I knew I
couldnrsquot get scaredrdquo Teresa seemed to equate feeling afraid with losing control in
that she believed if she got scared and panicked whatever was happening to her
ldquowould just turn out to be worserdquo
One way for Teresa to stay in control was to go to sleep A few times during
her story Teresa described herself as feeling sleepy at the onset of her symptoms
but at other times her desire to go to sleep seemed a way to protect her self from
the rea
107
lity of what was happening and a way to deflect her fear
And I tried and I tried in my mind I knew I couldnrsquot get scaredhellipI figure at that moment the best thing for me to do was to go to sleephellip trying to stay in control when that stroke first hit me knowing something happened to
me staying in control was very hard The only solution I knew was to go to sleep Going to sleep also offered the hope that the situation would resolve itself
without any action on Teresarsquos part ldquoIf I would sleep it off I would get up and it
would be all right
Staying in control had been important to Teresa during the last year Since
Juanrsquos accident Teresa has been his primary caregiver as well their sole means of
financial support ldquoWhen Juan got into the accident everything changed and I had
to be in control to take care of himrdquo she said Juan was unable to work due to the
severity of his injuries and he required extensive care when he first came home
from the hospital She described the time between Juanrsquos accident and her stroke
as very stressful and said she was smoking a lot of cigarettes then ldquoI was under a
lot of pressure with my boyfriend working second shift and paying someone to
take of him while I worked Then I was laid off from workrdquo When Teresa lost her
full‐time job at a commercial bakery she quickly had to take a part time position at
a dry cleaner to support Juan and her It was about a month after taking this part
time position that she had her stroke ldquoI donrsquot really know what caused my strokerdquo
she sai
108
d ldquobut Irsquom thinking [that] the stressrdquo
It was apparent that Teresarsquos identity is strongly bound up with her role as
Juanrsquos caregiver and head of her household She feels pride in how she cared for
Juan since the accident and how she worked to support them both financially ldquoI
donrsquot think any of my sisters could do what I did You have to depend only on
yourselfrdquo she said Unfortunately I didnrsquot follow up on Teresarsquos comment about
her sisters because I was reluctant to ldquopryrdquo into her life As a result I missed the
opportunity to discover how her relationship with her sisters may have figured
into her story
On the day of her stroke Teresa felt that she could not look to her son or her
boyfriend for help Juanrsquos diminished cognitive abilities meant that he would not
be able to fully understand what was happening to her Her youngest son was in
the house but he didnrsquot notice that anything was wrong and Teresa didnrsquot think of
telling him what was happening to her ldquoHe had his own problemsrdquo she said ldquoHe
was upset with his girlfriendrdquo She also did not think about calling anyone else Not
telling anyone about her symptoms seemed consistent with Teresarsquos description of
herself as someone who stays in control during challenging times and depends
only upon herself
Teresa walked toward the house and up the back steps behind her son
From where we were seated on lawn chairs in the carport Teresa gestured toward
the steps and remarked that although there were only three steps it was difficult
for her to climb them due to her dizziness on the day of her stroke Once she was
inside the house Teresa started down the hall but ldquowasnrsquot walking rightrdquo and kept
ldquobumping into the wallsrdquo This was a confusing sensation for Teresa because she
felt as though she was walking in a normal manner She thought she was walking
109
straight ldquoI knew what I needed to dordquo Teresa recalled ldquobut when I was actually
doing it it wasnrsquot workingrdquo
Teresa described the experience of believing that she walking straight
despite being unable to do so as akin to having two parts of her mind In the
intentional or ldquogood partrdquo of her mind Teresa set out to walk straight down the
hall but the ldquobad partrdquo of her mind affected by her stroke caused her to veer off
course ldquoI guess part of my mind knew what had to be done but the other part just
didnrsquot do what I wanted it to dohellip The good part is what I know ‐ the bad part was
I did the oppositerdquo If the ldquogood partrdquo was what Teresa knew the ldquobad partrdquo of her
mind was unknown her at the time of her stroke
Despite her desire to go to lie down and sleep Teresa decided that she
needed to fix something to eat for Juan ldquoSomething told me I know that he was
hungry and needed to eat And he was sick so I knew I needed to do thatrdquo she said
So Teresa made her way to the kitchen and began to prepare food for Juan This
was very hard to do because of the sensation that everything was moving and the
way her eyes were jumping around Teresa kept bumping into things in the kitchen
and had to keep closing her eyes as she worked She felt in a hurry ldquoI know I
needed to hurry up and do that cause there was something wrong with me and he
needed to eat and I didnrsquot know how long I was going to be like that So I was in a
hurry to do that and in a hurry to lay [sic] down toordquo Teresa said
110
After she finished in the kitchen Teresa went to her bedroom and got into
bed Juan came in a short while later and lay down beside her ldquoI went to sleep
right by him and he didnrsquot know that something had happened to me He thought I
was just asleep He thought it was normal And I never went to sleep during the
dayrdquo she said
Several hours later ‐ Teresa is not sure how many ndash she was awakened by
her oldest son who had come to check on her Her house had twice been broken
into and her children often called or came over to see if all was well She
remembers that she did not want to wake up and recalls telling her son to ldquocome
back in four or five days when I was awakerdquo She laughed at this memory
Unbeknownst to Teresa at the time her son left her and drove to his sisterrsquos
apartment to consult with her about the way Teresa had acted when he tried to
wake her
Some time later Teresa was again woken up by her oldest son who was
ldquohollering at me and screaming at merdquo to get up because she had to go to the
hospital He told her that his sister thought that Teresa may have had a stroke
Teresa was reluctant to get out of bed but when her son told her she could either
go to the hospital with him or he would call an ambulance she got up put on her
house shoes and glasses and asked for her purse She was still very dizzy and knew
that something wasnrsquot right but she did not want her son to call for an ambulance
She felt that it would be embarrassing for other people to see her being wheeled
111
out on a stretcher and she didnrsquot want anyone to know that she was sick or that
something had happened to her Teresa described herself as ldquothe healthy onerdquo in
her home seemed not to like the idea that other people would think of her as
otherwise
There was another reason Teresa did not want an ambulance called to her
house She suspected that she was not coming home from the hospital that night
and was concerned that an ambulance would be ldquodistractingrdquo and ldquocall somebodyrsquos
attention ‐ the wrong peoplerdquo to the fact that she was not at home She was afraid
that if people knew she was not at home they would take advantage of her absence
and break into the house ndash and Juan would be unable to deter the robbery
Teresa was driven to the hospital by her oldest son On the way she had to
keep her eyes shut because of the dizziness and the uncontrolled movement of her
eyes Once they reached the hospital her son told the admissions staff that his
mother may have had a stroke After that Teresa said she did not wait long to be
seen When she signed her name on the admitting forms she didnrsquot recognize her
handwriting ldquoI couldnrsquot tell that was my writing but I signed the paper anywayrdquo
she said While she was in the emergency department Teresa recalled that she just
wanted to go to sleep
Teresa experienced her stroke symptoms as a threat to her ability to stay in
control of her life and to care for herself and Juan She talked about the possibility
of having another stroke and the possibility that another one might be more
112
serious than this one Teresa said that if she had another stroke she hoped that she
would go to sleep then as well
If it were to happen again to me if anything happens to me I hope I just go to sleep I donrsquot want to know whatrsquos happening to me Irsquod rather go to sleephellip If I were to have another stokehellip more serious than this one where I ouldnrsquot come out of it Irsquod rather just go to sleep and stay asleep than wake p and be totally different than what I was cu
113
Maria
ldquoI can make itrdquo
It seemed as though I was barely in the door of the martial arts studio
owned by Maria and her husband Craig when Maria started to tell me the story of
her stroke She sat behind the desk near the studio entrance and I sat in her
wheelchair Despite right sided paresis from her stroke five months earlier during
the interview Maria often would rise from her chair to demonstrate how her body
had acted on the day of her stroke Her gestures and the fact she spoke rapidly and
with emphasis and animation made it seem as though this enthusiastic 55 year old
Hispanic woman was enacting her story rather than telling it
Maria often traveled with Craig when he and his students attended martial
arts tournaments The couple had just set out for a tournament one morning when
Mariarsquos right arm suddenly dropped from where it was propped against the car
door causing her elbow to hit the door handle and jolting her with an intense
ldquofunny bonerdquo sensation At first Maria wondered if she dozed off and her arm had
slipped But after the ldquofunny bonerdquo feeling passed she started thinking more about
what had just occurred Maria turned to her husband and remarked how weird it
was that her arm suddenly dropped ldquolike a sackrdquo She had the impression that her
arm had dropped ldquoautomaticallyrdquo and she had no control over it when this
happened ldquoThe more I thought about ithellipyour arm just doesnrsquot drophellipI thought
114
maybe it was somethingrdquo Maria said The something she thought about was a
stroke
Maria knew she was at risk for stroke She cared for both her parents when
they had strokes and her sister had a stroke at age 42 Maria also knew that having
diabetes and a history of hypertension put her at risk ldquoI always had that in the
back of my mindrdquo she said Because of her personal and family history Maria was
inclined to go to the doctor if her body changed or she noticed that something was
different ldquoYou have to listen to your bodyrdquo she said Maria said that she would
ldquotake concern if I wasnrsquot feeling good or if I felt my arm kind of numb I would go
check it See I would take a lot of cautious [sic] in going to doctors and finding out
if something was wrong Even if it was little simple things I would go and ask
themrdquo she said ldquoI would rather make sure that somethingrsquos not wrong than be
sorry that I didnrsquot gordquo
Maria demonstrated for me how she held both arms out straight in front of
her in the car to see if her arm dropping may have indicated a stroke ldquoI put my
arms [out] together and there was nothing down or nothing They always tell you
to put your hands straight and if one is lower than the other one something is
wrongrdquo Maria learned this maneuver from a health professional while she was
caring for her mother after a stroke Craig asked if she wanted to turn back and be
checked out by a doctor but Maria said no She was reassured that her arms were
symmetrical when she held them out and her right arm felt as strong as her left
115
She continued to test her arm periodically during the 60 mile drive to the
tournament
When the couple arrived at the tournament the memory of what had
happened lingered ldquoAnd even when I got off of the carrdquo Maria recalled ldquohellipI put my
hand out there to see if it was fine It was fine I picked up my legs and I just moved
itrdquo When her husband asked what she was doing Maria told him she was ldquojust
checking to seehellip if we need to go to the doctorrdquo Maria told Craig she thought all
was well because she was walking and talking normally and her arm appeared
fine Once inside the tournament venue Maria walked up the stairs instead of
using the elevator as she frequently did for exercise
The rest of the morning passed uneventfully until around noon when Maria
developed a ldquoterrible headache that just came onrdquo The headache was ldquoone side
only And it was realty surprising because when I would rub my head you know I
would feel the headache and on this side no headacherdquo She asked one of the
martial arts students if he had any Tylenol He had some aspirin and she took two
and then closed her eyes and relaxed in her chair
About a half hour later Maria stood up to go to the restroom and realized
she was unable to stand up straight She got to her feet several times during the
interview to demonstrate how her body was leaning toward the right while she
narrated what it had been like to discover that her body was ldquosideways ldquoI was to
the righthellipWhen I would try to straighten myself up my body still kept on going
116
that way It just tilted It did not want to get straightrdquo she said Maria described the
sensation of leaning to one side as ldquooddrdquo and ldquoweirdrdquo After she realized she could
not stand straight Maria sat back down to think After a few minutes she reached
the conclusion that she was having a stroke because her mother had had the same
symptom with her second stroke ldquoWhen I got her up that morning from bed she
was leaning toordquo Maria recalled
As she had done that morning in the car Maria decided to assess what was
happening with her body She enlisted the help of the same student who earlier
had provided her with aspirin First she requested the student to watch her while
she stood up and tell her what he saw He confirmed that Maria was indeed leaning
to the right Maria then asked him to stay close while she tried to walk ldquoWhen I
was walking I was you know kind of limpinghelliphellipI felt like I was short on one footrdquo
she said demonstrating to me how she was ldquounbalancedrdquo when she tried to walk
with the student Maria said she had difficulty lifting her right foot when she tried
to walk and described her foot as feeling ldquoheavyhellip like you have cement in your
feet like you have some weights on your feet hellip on my ankle weighing it downrdquo
She described this sensation as ldquoreally strangerdquo After taking a few steps Maria
decided it wasnrsquot safe to walk and she sat back down and asked the student to get
her husband
Craigrsquos eyes widened when Maria told him ldquoHoney I think I got a strokerdquo
They quickly decided she had to go the hospital and Craig and several of his
117
students carried Maria down the stairs and to the car When she got into the car
Maria decided to take two more aspirin ldquobecause I knew that I had a strokerdquo She
believed that aspirin would ldquostop a lot of the damagerdquo A few minutes later a
disturbing thought occurred to Maria about the aspirin she had just taken ldquoThen I
remembered that too much aspirin could cause bleeding because thatrsquos a blood
thinnerrdquo she said ldquoBut I thought thatrsquos okay I took it I canrsquot do nothing about it
SohellipI just calmed myself I just told myself you know I took four aspirins Maybe
itrsquos good maybe itrsquos not but itrsquoll get me to the hospitalhellip But I just left it at that I
didnrsquot get myself into a panic or anything I just kept myself calm because I thought
if itrsquos my blood pressure I donrsquot need my blood pressure going up You see
because blood pressure causes strokes toordquo she said
Maria began to regret her decision not to seek medical attention earlier that
day when her arm dropped ldquoWhen I got into the car the only thing that I couldnrsquot
believe the only thing that got me really upset was that hellip I did not notice this at
830 when that happened Thatrsquos what kept on my mindhellipIrsquom in this place Irsquom at
this moment where Irsquom at because I did not pay attention That got me kind of
frustrated That got me mad with myself that I should have known betterrdquo she
said
Maria tried to put those thoughts behind her She described herself as a
positive person who does not dwell on things especially those things that she can
not change In times of crisis she tries to focus on the problem at hand and decide
118
upon the best course of action Religious faith is an important part of Mariarsquos life
and as is her practice during difficult times she said a brief prayer before she and
Craig set out for the hospital ldquoI made the sign of the cross and says lsquoGod help us
get to the hospital safe Wersquore in your handsrsquo And that was it I told my husband
lsquoLetrsquos go because God is with usrsquorsquorsquo
As they were pulling out of the parking lot Craig asked Maria to which
hospital he should drive The tournament was in a major metropolitan area and
they were within several blocks of two medical centers Maria replied that she
wanted to go home She wanted the security and familiarity of the hospital where
both her parents received medical care during many episodes of illness during
their elder years She was acquainted with the physicians at the hospital as a result
of previous health care encounters and also though the martial arts studio where
members of the hospital staff and their families take classes ldquoI knew I would be
better off at [hospital] because I would be in my hometown instead of somewhere
that I did not know nobodyhellip I could call any of the doctors and they would come
in and see merdquo she said
Her husbandrsquos welfare also figured into Mariarsquos choice to bypass hospitals
in close proximity in favor of the hospital at home ldquoI knew they were going to
leave me at the hospitalhellipand I was not going to be there a week or a day I was
going to be there for weekshellip If I had to go in the hospital itrsquos nonsense [Craig]
driving 60 miles every day or staying with me every day over therehellip If I stay here
119
I says you are gonna drive yoursquore gonna have to come back home for a while to
teach Yoursquore gonna worry and everything And I says lsquoJust go homersquordquo
Craig immediately expressed concern about the wisdom of this plan Maria
had to convince him why not seeking immediate medical assistance was a
reasonable thing to do She knew that a medication to treat stroke was available
and which must given within three hours of the first symptom and she believed
she was ineligible for that treatment because so much time had elapsed since what
she thought of as the onset of her stroke ldquoMy first symptom was at 830 or 800
when my arm fellhellip I said lsquoThey cannot give me my medicine because it has been
more than 3 hoursrsquohellip It didnrsquot matter where I went or how long it took me to get to
a hospitalrdquo she said
Maria also argued that it was safe to take the time to drive an hour to the
hospital because she was still talking and thinking clearly She reasoned that if her
thought processes were not affected then she was not in immediate danger ldquolsquoYou
know if I wasnrsquot right who would know me better than you if I wasnrsquot focusing
rightrsquordquo she recalls saying to Craig ldquoCause I told him lsquoAm I focusing right How
does my eyes look When I talk to you do I make sense do I slur or anythingrsquo He
goes no So I said lsquoWell letrsquos go letrsquos not waste time and letrsquos gorsquordquo
The idea that stroke could be associated with not thinking clearly and that
this was a sign that necessitated immediate medical attention came from Mariarsquos
experience with her mother and her sister ldquoWhen my mother had her stroke and
120
my sister they couldnrsquot think clearly You could see in their eyesrdquo she said Maria
recalled that they could not answer questions put to them in the emergency room
and she interpreted their inability to do so as a sign that their condition was
serious Reflecting on the difference between her symptoms and those of her
mother and sister and what that difference might mean Maria concluded ldquoWhat
else could happen Thatrsquos how I looked at itrdquo
Craig agreed that they would go to the hospital at home but Maria knew
that he was worried Once they were on the highway he started driving very fast
She told him to slow down and tried to reassure him by saying that they would
stop at a hospital on the way if she developed problems thinking or talking ldquoI says
lsquoYou see Irsquom still talking Irsquom still focusing sohellipI can make it I says lsquoIf I canrsquot make it
I will tell you to stoprsquordquo
From past experiences with family members Maria knew that the
emergency department staff would test her cognitive abilities and she asked Craig
to do the same during the drive by asking her questions about their lives ldquoHe says
lsquoWhen did we meetrsquo And I could tell him that lsquoWhen did we get marriedrsquo I could
tell him that lsquoWhen did we get engagedrsquo And like that And then lsquoWhen did your
mom pass awayrsquo I could say thatrdquo
Despite passing these ldquotestsrdquo it was apparent to Maria that her husband
remained very concerned about her welfare and she tried to divert his thoughts by
engaging him in conversation about the tournament ldquoAnd I just kept on talking
121
For him to realize that I was okay you know We had time to get to the hospital
and everything That I was going to be okayrdquo she said
What Maria did not tell Craig during the drive was that she had developed
several new symptoms Her right arm was tingling and felt as though it had fallen
asleep ldquoLike how you sit on your foot and you get off your foot and then you feel
kind of like you have to move itrdquo she said ldquohellip little fire ants crawlingrdquo Maria also
felt itchy all over her body and she described this sensation as akin to ldquowearing
new clothes that hadnrsquot been washedrdquo In addition when she scratched her right
arm the resulting sensation felt out of proportion to the pressure she was applying
to her skin ldquoWhen I scratched I thought Irsquom not scratching that hard but it felt like
I was scratching like clawingrdquo she said She used the phrase ldquorazor bladesrdquo to
describe the intensity of sensation she experienced when scratching her skin
Maria kept silent about her new symptoms because she suspected if she told Craig
it woul est hospital d cause him to worry even more and perhaps head for the clos
Defiance is defined in the Merriam Webster online dictionary
(httpwwwmirriamwebstercom) as a ldquodisposition to resist willingness to
contend or defyrdquo This description seems to describe the emotions Maria was
experiencing as the couple sped up the highway Her foot was sliding across the
floor of the car and Maria was unable to prevent it from doing so Maria began to
hit her right foot with her left foot admonishing her right foot loudly as she did so
ldquoYou are going to get better I canrsquot believe you are acting like this heavy and
122
crookedrdquo Maria said she made a joke out of talking to her foot in this manner and
Craig protested that she shouldnrsquot joke about what was happening because it was
serious When he reached across to hold Mariarsquos leg to stop her from hitting her
foot Maria responded to him by saying ldquoThatrsquos what it needshellip It needs to be
talked to It is not going to do what it wants to dordquo
Thinking of a symptom or a part of her body as a separate entity was not an
uncommon practice for Maria when she developed physical symptoms
ldquoSometimes you have to talk to your body to tell it itrsquos going to do what you want it
to and not what it wants to dordquo she said Her father had acted in a similar manner
ldquoHe [father] had a real bad cough and he would beat [his chest]hellipHe would get real
frustrated and say lsquoYou better go away because I am not going to keep coughing
like thatrsquordquo Maria recalled
The defiance with which Maria responded to her malfunctioning foot
served to deflect the seriousness of the situation and provided her with the sense
that she would come out okay ldquoI didnrsquot want to think that my leg was not going to
work at allrdquo she said ldquoIn my head I thought well if I begin thinking something
serious is really wrong itrsquos you know I donrsquot know I just go It is not as serious as
it is I am not going to let it get serious Thatrsquos what I kept saying to myself I am not
going to let it get seriousrdquo Immediately after saying this Maria began to talk about
the various ways her family members had responded to their strokes She
contrasted her fatherrsquos response to those of her mother and sister ldquoMy mom just
123
gave up My sister just gave up I was determined if I ever got a stroke I was not
going to let it take over me Thatrsquos how my Dad was toohellip [he] never let the stroke
take overrdquo Now that a stroke was happening to her Maria adopted her fatherrsquos
attitude and told her leg that it was ldquonot going to beat merdquo
When they arrived at the hospital Craig got a wheelchair and brought her
into the emergency department where an acquaintance from the martial arts
studio was working at the registration desk Maria thought that this person must
have seen her leaning to one side because she was brought straight back to an
examining area where she was soon seen by a nurse and then a physician The
physician told her that she was not eligible for t‐PA because too much time had
passed since her symptoms began ldquoWersquoll let it take its courserdquo Maria replied
When she told the story of her stroke Maria returned several times to her
decision to continue on to the tournament that morning after her arm dropped in
the car She felt that her body was telling her something and she chose to ignore it
ldquoI donrsquot know why I did that I mean you canrsquot beat yourself uphellipIt happened It
appened It was meant to be you know It was meant to berdquo h
124
Tiffany
ldquoIrsquom too young to be having a strokerdquo
Tiffany contacted me a week after her stroke while she was still a patient on
the rehabilitation floor in the hospital She was anxious to tell me her story and
said she wanted to do anything she could to help other women with stroke The
first time I met her I was struck by the sad expression on the face of this 24 year
old woman She walked very haltingly her partially paralyzed left leg lagging
behind her Her left arm also had paresis as a result of the stroke and she
supported it with her right hand The left side of her face dropped slightly During
the interview she sometimes did not look at me when she talked about the day of
her stroke and I was left with the impression how traumatic the experience of
having a stroke at age 24 had been for her
Six weeks passed between the time I first met Tiffany and the second
interview When I saw her again her face no longer drooped and she walked with
only slight hesitation She had more use of her hand and arm but they were still
weak She seemed more animated and less sad Tiffany had received t‐PA and I
wondered if and in what way the damage to her brain might have been different
had she not gotten this treatment Six months later I received a call from an elated
Tiffany who wanted to share the good news that she was fully recovered ldquoI can
runrdquo she exclaimed
125
Tiffany is a single mother of a rambunctious two‐year‐old boy who never
seemed to stop babbling and trying to engage our attention during the interviews
both of which took place in her apartment The first time we met I assumed by her
appearance that Tiffany was African American Later when I was filling out the
background information form and asked about race Tiffany replied ldquoI have always
considered myself Hispanicrdquo This would be first of two occasions during the study
when the answer to this question was not what I anticipated I was glad I had
asked and not assumed
On the day of her stroke Tiffany was at work as a nursing assistant in an
extended care facility She considered herself very lucky to have had her stroke
while at work With the exception of clocking in at 6 am Tiffany has no memory of
what occurred that morning prior to being in the bathroom at around 11 am It
was in the bathroom that she started to feel lightheaded ldquoI felt like I was going to
faint but Irsquove never fainted before so I donrsquot really know what that feel like But I
felt like I was going to pass outrdquo she said Tiffany also described herself as
ldquowobblyrdquo on her feet and felt as though she might topple over ldquoI remember
thinking that I needed to watch my step because the bathroom is really small and I
knew if I fell in there I was going to hurt myselfrdquo
Several events happened quickly and in succession after Tiffany left the
bathroom The first event was her awareness of pain in her right temple ldquoI really
remember that headache that morning because I donrsquot usually get headaches and it
126
hurt It hurt really bad hellipon the scale of one to ten it was probably a sevenrdquo After
she had her stroke Tiffany realized that the pain she experienced when she came
out of the bathroom was very much like the pain shersquod had when she coughed
when smoking marijuana in the two months prior to her stroke ldquoI used to smoke
weed and I remember like when I would it would make me choke and I would
cough real bad I would always hurt real bad on the right sidehellip It would hurt
really really bad I mean really bad Like it was enough that when I was coughing I
would just hold my head and be trying to stop myself when I was coughing lsquocause
it hurt so badrdquo she recalled
It was Tiffanyrsquos understanding that a brain scan taken at the time of her
stroke showed that the stroke had been caused by a blood clot in an artery located
on the right side of her brain Tiffany wondered if the right‐sided head pain she
experienced while coughing was in some way related to her stroke ldquoMaybe when I
was coughing I was trying to push it [blood clot] through you know Or maybe I
pushed it into the position that it was when I would be coughingrdquo She hoped
telling me this might help someone else ldquoIf anyone else you interview tells you
that they smoked tell them to stop smoking it Leave that alone itrsquos not good for
yourdquo
Standing in the hallways outside the bathroom wobbly on her feet and with
pain in her right temple Tiffany experienced an episode of mental confusion
which consisted of the impression that it was later in the day then it actually was
127
ldquoIt felt like it was later in the afternoonrdquo she said Tiffany was working a double
shift that day and she felt as though it was time for her to start her second shift
which was scheduled to begin at 2 pm ldquoI was thinking that we had already done
lunchhellip I felt like it was after that [lunch] timerdquo she said Tiffanyrsquos impression that
it was later in the day didnrsquot jive with what she noticed in the halls when she came
out of the bathroom There were no residents in the halls and normally after lunch
and in the afternoon the residents were up and about ldquoI didnrsquot see any residentshellip
And I thought that was weird because I felt like I had already been therehellip I felt
like you know like time had passed so I knew there was supposed to be some
residents uprdquo she recalled
When she described this episode Tiffany said she didnrsquot know to what to
attribute her impression that it was later in the day She wondered if the light had
changed and it had become darker while she was in the bathroom since there are
many windows in the hallway
The next event was Tiffany dropping her keys ldquoThey just slipped out of my
handrdquo she said Looking back Tiffany thought she must have dropped her keys
because the stroke was starting to affect the strength of her left hand in which
hand she thought she had been carrying the keys ldquoI was holding the keys in my
hand and they just slipped but I was holding themrdquo she recalled When she knelt
down on her left knee to pick up her keys the sensation of dizziness and instability
that she had just experienced in the bathroom increased and Tiffany was unable to
128
keep her balance ldquoWhen I was kneeling is when I got really really lightheaded and
really dizzy and it was like I couldnrsquot keep myself up anymore And I just fell overrdquo
she said ldquoI couldnrsquot stop myself Like I knew that I was falling but I couldnrsquot stop it
like I couldnrsquot get my balance in order to stop myself from hitting the floorrdquo
As Tiffany lost her balance she had the perception that everything was
happening in slow motion ldquoI felt like I fell really really slow It was weird the way I
felt like I fell First I hit my knee then I hit my shoulderhellipI fell so slowhellip I knew I
was fallingrdquo she said If Tiffany did have a loss of consciousness it was very brief ldquoI
think probably by the time I hit the floor I was awake Because I remember when I
hit the floor I just sat up on my ownrdquo she said
Two nurses and a medication aide saw Tiffany fall ldquoI remember seeing the
nurses running toward me before I had even hit the floorrdquo she recalled ldquoThey
asked me what happened and I told them nothing that I had just got lightheaded
and passed outrdquo Tiffany joked with the staff about what had just happened to her
ldquoI remember laughing about it when I kind of came tohellipand telling them lsquoYrsquoall see
me fall in slow motion like an old personrsquordquo
Tiffany wasnrsquot sure what had happened to her but she thought there was a
connection between the lightheadedness she began to feel in the bathroom and
what she characterized as ldquopassing outrdquo when she knelt down to retrieve her keys
ldquoI was thinking that whatever was making me lightheaded in the bathroom was
what had made me pass out But I didnrsquot I couldnrsquot think of what would make me
129
lightheaded and make me pass out I just thought that one was the reason for the
otherrdquo she said
Her coworkers helped Tiffany scoot back so she was sitting with her back
against the wall One of the nurses asked Tiffany to smile at her ldquoI do remember
when they told me to smile at them I could feel that one side on my mouth wasnrsquot
moving It just didnrsquot feel like it had raised up like the right side of my mouthrdquo she
said The nurse told Tiffany she might be having a stroke because one side of her
mouth was dropping ldquoAnd I just kept telling her lsquoNo no I didnrsquotrsquo because all that
was going through my head [as] they kept telling me I had a stroke was my age
And I just kept thinking Irsquom too young to have a strokerdquo she said
Tiffany said she did not make the connection between the bodily events she
had just experienced and the nursersquos assessment that she was having a stroke ldquoI
didnrsquot even associate what she was telling me with the way I was feeling when I
fell Like when she told me I had a stroke I didnrsquot think well maybe thatrsquos why I felt
lightheaded maybe thatrsquos why I felt dizzy It didnrsquot register like that It was like no
that couldnrsquot have happened to me Irsquom 24 That was the main thing that kept going
through my headrdquo she recalled
Tiffany attempted to stand up ldquoI tried to stand up and put both of my legs
under me and I couldnrsquot move my left leghellip We have rails in the hallway and I
grabbed one of the rails with my right hand and I tried to push myself up with my
legs and I couldnrsquot My leg just felt like it couldnrsquot bear my weightrdquo she said Her
130
coworkers kept telling her not to move ldquoI think they could tell that my left side
was affected before I could cause I kept trying to get up and they kept telling me to
stop before I fell again I was like lsquoIrsquom all right Irsquom all rightrsquo and I kept trying to
grab the railing and pull myself up with my arm and push with my legs but I
couldnrsquotrdquo
Although Tiffany said she was scared when the nurse told her that she
might be having a stroke at other times during the interviews she said that she
had not felt afraid She attributed her lack of fear to being surrounded by her
coworkers ldquoThe people that I was with at work I trust them Irsquove been working
there for a few months SohellipI know everybody there and I know everybody is good
at their jobsrdquo she said I wondered if she felt ambivalent about feeling fear
While awaiting the arrival of EMS Tiffany continued to reject the idea that
she was having a stroke ldquoThey were telling me lsquoyesrsquo and I was telling them lsquonorsquordquo
she recalled ldquoI just remember thinking over and over when they kept telling me I
had a stroke that I couldnrsquot be having a stroke Irsquom too young to be having a stroke
This canrsquot be happening to me I just kept rejecting the ideardquo
Although Tiffany earlier had experienced confusion as to the time of day it
was her impression that she was functioning well cognitively while waiting for
EMS ldquoMy perception of time was all messed up Everything else was OKrdquo she said
As evidence that her mind was still working Tiffany cited the fact that she was able
to remember how her momrsquos phone number was programmed into her own cell
131
phone instruct others how to access it and identify the members of the nursing
staff who had come to her aid ldquoWhen they asked me for my momrsquos number I gave
them my cell phone I told them lsquoJust hold down ldquo1rdquo and it will automatically dial
her numberrsquordquo She also had the thought that she did not want to go to the hospital
in an am bulance which Tiffany thought indicated that her mind was working
Tiffany was not comfortable with the idea of going to the hospital in an
ambulance ldquoI remember thinking I donrsquot want to go in the ambulance I never rode
in an ambulance I wanted to wait on my momhellip So that way at least somebody I
knew could at least ride in the ambulance with me lsquocause I wouldnrsquot know the
EMTshellipI think that was why [not wanting to go in an ambulance] lsquoCause like I said
at work I was comfortable with them lsquocause I know all of them and I knew none of
them could leave with merdquo Tiffany said
Once EMS arrived everything seemed to move very quickly The emergency
technicians placed two IVs in Tiffanyrsquos arm ldquoIt seems like theyrsquore doing everything
fasthellipbut theyrsquore real good about telling you everything that theyrsquore doingrdquo she
said Tiffany recalls that in the ambulance she tried to mentally distance herself
from what was occurring ldquoI just didnrsquot want it to be happening to me so I kept
telling myself that it wasnrsquotrdquo she said
It was in the ambulance that Tiffany experienced a change in her perception
of her s
132
urroundings Suddenly nothing seemed real to her
It didnrsquot really seem like it was happening to meIt didnrsquot seem realrdquo She compared these alterations in perception to how a movie is different from
an amateur video ldquoYou know how when you watch movies and it looks like itrsquos a movie You can tell itrsquos a movie But certain scenes look like itrsquos somebody just tape recording Thatrsquos how it felt like in the ambulancehellip like when yoursquore watching a regular movie but then certain scenes look like itrsquos just somebody walking around with a [hand‐held] recorder and it looks like generic film Thatrsquos how I remember it looking in the ambulance to merdquo ashe explained Tiffanyrsquos perception in the ambulance that things around her ldquodidnrsquot seem
realrdquo seemed to indicate that she experienced something in addition to ndash or other
than ndash difficulty gasping that she actually was having a stroke Her description of
viewing a ldquogeneric filmrdquo may have been indicative that she experienced
ldquoderealizationrdquo which is described in the psychological literature as the perception
of the external world as unreal dreamlike or changing that may occur during
times of great stress or anxiety (American Psychiatric Association 2008)
Alternatively Tiffanyrsquos altered perception of the world may have been a result of
what was happening in her brain due to the blockage in a blood vessel
A doctor at the hospital told Tiffany that a combination of a vaginal
hormonal contraceptive cigarette smoking and overweight likely led to her stroke
Tiffany said that prior to her stoke she had not been aware that these things put
her at risk And she had thought that stroke was a disease that only affected older
individuals ldquoI knew it [stroke] was something that happened to old people And I
had never heard about it happening in young women in young people period Even
on birth control I had never heard any reports about thatrdquo Tiffany believes her age
was the main reason she had such a hard time accepting the fact that she was
133
having a stroke ldquoI had never heard about it happening to young people so I didnrsquot
think that it did And then I couldnrsquot understand why it would be happening to merdquo
134
Lisa ldquoIrsquom not rightrdquo Lisa likes to stay connected The 34 year old divorced mother of three is
never far from her cell phone on which she talks with her friends and sends texts
and photos She often is on‐line late into the night Her cell phone was on the table
between us during both interviews She wanted to meet at Starbuckscopy for the
interviews and I got the impression this was somewhat of a treat for her Lisa
works full time in the office of a shipping company and goes to school at a
community college on the weekends She and her children live with her mother
At about 2 am on the day of her stroke Lisa suddenly was aware that she
had no memory of what she had just been doing on her computer ldquoI didnrsquot
remember what I was doing before I realized that I washellip sitting here I couldnrsquot
remember if I was talking to someone or if I was looking at a website I just knew I
was at the computer doing the computer stuff probably talking to somebodyrdquo she
recalled Lisa assumed she must have fallen asleep but she had no sense for how
long
As she looked at the computer screen Lisa noticed that something was
wrong with her eyesight ldquoMy eyes were kind of unfocused like blurryhellip almost
like when you wake up out of a sleep and just like your eyes are still like glossyhellip
just kind of blurry She also could not feel the mouse under her right hand ldquoI could
see my hand on the mouse I didnrsquot feel itrdquo Lisa attributed these sensations to
135
tiredness and she decided that sleep was in order ldquoI shut down the computer and I
went to bed And that was the end of that part of itrdquo
At around 830 am when Lisa awoke she felt too tired to get out of bed ldquoI
just felt that I just donrsquot want to get up I donrsquot even feel like I could get up Thatrsquos
how tired I am So tired that almost that I couldnrsquot move if I wanted to but I didnrsquot
even tryrdquo she recalled At this point Lisa said that she had no inking that anything
was wrong and she attributed her tiredness to her late night at the computer Her
two youngest children boys who were ages seven and nine at the time of her
stroke came into her room wanting breakfast Lisa sent them to find her mother
before she went back to sleep
About an hour later when Lisa awoke again she said ldquoThatrsquos when it got
like weirdrdquo She had the impression that her youngest son was in the bed with her
although she learned later that he was actually in another part of the house ldquoI kept
thinking that my youngest son was in the bed I could see him out of the corner of
my eye Whenever I would try to move the covers he wasnrsquot there Weird things
your mind does to yourdquo she said
Lisa thinks she either rolled out of bed in the process of looking though the
covers for her son or else she got out of bed to go to the bathroom and fell to the
floor In any event she found herself on the floor and had difficulty standing up
She remembers having to use her left arm to push herself against the bed in order
to stand When she was upright Lisa realized that she was ldquoaskewrdquo and that the
136
right side of her body felt strange ldquoI was like leaning to the right and I couldnrsquot
feel anythingrdquo she said Because she was leaning to one side things around her
looked ldquowrongrdquo and ldquodifferentrdquo and ldquokind of off to the siderdquo Lisa recalled ldquoIt was
like my head was tilted even though it wasnrsquot just my head I mean it looks like my
head was tilted but it was like all of me is leaningrdquo
Lisa started walking toward the bathroom door but was soon off course ldquoI
kept running into the wall because I would veer that way [to the right]rdquo she said
In order to navigate to the bathroom she had to keep turning to the left to
compensate ldquoI could see that I was not going where I wanted to And I would
adjust to be back to that way I would turn towards the door again and go back
towards the doorrdquo When she reached the bathroom door she had to use her left
hand to grip the door jamb and direct herself inside
Despite the fact that Lisa was drifting to the right when she walked her gait
did not feel different than usual ldquoIt didnrsquot feel any different I think in my head I
thought I was walking but my right side wasnrsquot working that wayhellip I thought I was
walking but I got told after the fact that I wasnrsquot walking with the right leg It was
literally dragging behind mehellip It wasnrsquot up and down off the floorhellip I thought I was
walking right and it wasnrsquot doing what I thought it was doingrdquo
It was in the bathroom that Lisa discovered that her right hand ldquowasnrsquot
workingrdquo This was not something that Lisa could feel but was something she
perceived through her sense of vision When she looked down at her hand she
137
realized that she had ldquoa death grip on the toilet paperrdquo She discovered that she
was able to move her right arm and hand but without using her sight she had no
way to know how tightly she was holding objects ldquoI didnrsquot realize that it was a fist
I thought I was just holding it I couldnrsquot tell that the paper that anything was in
my handhellip I was like holding on to it tight thinking that I wasnrsquot holding it without
looking at it So hard to explainrdquo she said
As was the case when she was walking Lisa was at first unaware that there
was anything different about the way she was holding the toilet paper ldquoI reacted
like I was fully functional even though it wasnrsquot working Like in my hand with the
toilet paper in my mind I was holding it fine but looking at it my hand was you
know in a fist So I thought I was doing OK but obviously wasnrsquotrdquo
Lisa likened how her hand felt to a game she played in childhood but with
an important difference She demonstrated this game by grabbing one wrist tightly
with the other hand ldquoThe only thing I can equate it to would behellip childhood games
of hellip you hold your hand until you canrsquot feel your fingers Thatrsquos not the same
because you can still feel tingling I didnrsquot even have that I had absolutely nothingrdquo
she said
Lisa distinguished between the sensation of numbness in which you are
aware of that you have an arm or a leg but it lacks sensation or has altered
sensation and what she felt the morning of her stroke which she characterized as
a sense of absence Describing how her hand and arm felt Lisa said ldquoI didnrsquot feel
138
like it was numb Didnrsquot feel at allhellip almost like it wasnrsquot thererdquo This sense of
absence included a lack of awareness of where her right arm and leg were ldquoI
couldnrsquot have told you wherehellip I put my hand at I know I moved it but I couldnrsquot
judge how far how high how right left I just know I moved itrdquo she recalled The
only way that Lisa knew the location of her right arm and leg was ldquoby looking but
not by feelingrdquo
By now Lisa was frightened and she was crying ldquoI knew something was
wrong but didnrsquot know what it wasrdquo she said ldquohellipIrsquom not right Thatrsquos all I could
think Irsquom not right Like I didnrsquot know what it was that wasnrsquot right but I knew it
wasnrsquot Itrsquos weirdrdquo
As a mother Lisa had experienced fear about her childrenrsquos health most
notably when two of her children had seizures But this was ldquoabout the only timehellip
I was scared basically for my own well beingrdquo she said The only other time in her
life that Lisa remembered being scared for herself was the moment right before
she fainted on a very hot summer day when she was a teenager
Lisa knew she had to find her mother ldquoI had to get to herrdquo she remembers
thinking She made her way down the hall by ldquoholding onto the wall balancing
myself because I was walking crookedrdquo She later learned that she had crashed into
her daughterrsquos door trying to get to her motherrsquos room When Lisa reached her
motherrsquos room she sat down on the bed just inside the doorway and tried to tell
her mother what was wrong ldquoIrsquom crying and says lsquoMom Irsquom not rightrsquo And thatrsquos
139
all I could get out of my mouth lsquoIrsquom not rightrsquo And she was like lsquoWhatrsquos wrongrsquo I
couldnrsquot even say I donrsquot know or I donrsquot know something bad Irsquom just like lsquoIrsquom
not rightrsquo Those are the only words I could say Irsquom not rightrdquo
The loss or impairment of the power to use or comprehend words (aphasia)
is a frequent symptom of stroke An hour before when her children had come to
Lisa wanting breakfast she had been able to communicate with them she has no
reason to think that they had not understood her responses to them Now she had
largely lost the ability to use words ldquoI donrsquot think I was thinking anything other
than Irsquom not right cause you know my mom kept asking me what was wrong
andhellip I couldnrsquot think of the words to tell herrdquo she said Although Lisarsquos ability to
use words was severely impaired she was able to understand what was being said
to her ldquohellip I knew exactly what my mother was telling me but I couldnrsquot form the
thoughts to respond or even think about respondingrdquo she said
Out of everything that was happening to Lisa her inability to communicate
was probably the most frightening This was this symptom that gave rise to the
sense that something might be seriously wrong ldquoI think the scariest thing is Irsquom a
babbler and I couldnrsquot talk I knew thatrsquos how bad it was I couldnrsquot talk I knew
somethingrsquos wrong and itrsquos really wrongrdquo she said Although she knew that
something was very wrong at the time Lisa said she didnrsquot have any idea about
what could have been causing her symptoms
140
Lisa was not the only one in the house who was frightened that morning
She realized that her mother also was scared After helping Lisa back down the hall
to her bedroom her mother swung into what Lisa called ldquomom moderdquo
Once I was full blown bawling and she realized that I couldnrsquot say what I wanted to then she was like in the mom mode She was scared I could see her looking at me She was like freaking out but mom mode What need to get done hellip She was like a little ant running around trying to figure out what was going on Wherersquos the phone We got to get somebody for the ids She just had the whole running‐around‐trying‐to‐get‐it‐done so we kcould get to the hospital Because Lisa was unable to use her right arm and leg her 14 year old
daughter helped her to get dressed Several times she tried to reach things or
standup but kept getting ldquooff balance on [my] right side Eventually her mother
told her to ldquojust sit stillrdquo After that Lisa sat in her computer chair waiting for the
ambulance to arrive in response to her motherrsquos call to 911 While sitting in her
chair Lisa had an unnerving sensation ldquolike bugsrdquo on her skin ldquoIt felt like
something was crawling on merdquo she recalled ldquoNot like tinglinghellipbut itrsquos almost like
I was hypersensitivehellip It just felt like something was touching mehellip whatever it
was I didnrsquot want it on merdquo Lisa said shuddering at this memory In response to
the ldquocreepy crawlersrdquo sensation Lisa had the urge to scratch her skin ldquoLike I was
literally sitting on my hands waiting for the ambulance lsquocause I felt like I was going
to scratch my skin off cause it washellip that bad that I was sitting on my handsrdquo she
said She also continued to have the feeling that someone or something was just
141
outside her peripheral vision ldquoI could see something behind me but every time I
would turn it was gonerdquo she said
During this time Lisa was aware that she had something important clutched
in her left hand ldquoAll I know is I had this little thing in my hand that I had to have It
was my cell phone and I know that now At the time I had no idea what it was or
what it was used for I just knew I had to have itrdquo
When EMS arrived Lisa was very frustrated when she was unable to
answer the questions of the emergency medical technicians (EMTs) ldquoThey kept
asking me what was wrong I didnrsquot have the words for itrdquo she said ldquoI could not
articulate what I wanted to sayrdquo She became ldquoupsetrdquo and ldquoirritatedrdquo when they
questioned her about drug and alcohol use She characterized their inquiries as a
ldquowhole slew of stupid questionsrdquo and said she was ldquojust dumbfounded that they
would even ask me thatrdquo She looked angry when she told me about this When I
asked her why these questions gave rise to such strong feelings Lisa responded
emphatically that it was because she did not do drugs ldquoI donrsquot do drugs pure and
simplerdquo she said Reflecting on her reaction Lisa acknowledged that she
understood why the EMTs needed to ask for this information She wondered if part
of her irritation stemmed from the fact that she thought it highly unlikely that
anyone would actually admit doing drugs to anyone in a position of authority such
as the EMTs although at the time she was not aware of this thought For some
reason I felt like there was something more to her strong feelings about being
142
asked about drug and alcohol use and although we came back to this topic several
times during the interviews I never got a sense of what else could have accounted
for her feelings
On the way to the hospital Lisarsquos arm kept falling off the gurney She
couldnrsquot feel where her arm was but would occasionally look down and see it
ldquodanglingrdquo ldquoI would have to grab it and put it back on my chestrdquo When she arrived
at the hospital Lisa remembers lying on a bed in the emergency department (ED)
and keeping her eyes closed ldquoI donrsquot even know why [kept eyes closed] Just didnrsquot
want to think about it Didnrsquot want to think what was happening or what was
wrong Just laid there and closed my eyes and held onto the phonerdquo she said Lisa
laughed when she recalled that she somehow managed to hang onto her cell phone
and arrive with it at the hospital despite being in the midst of a stroke
When Lisa looked back on her experience she felt that her age contributed
to a delay in her diagnosis As with the EMS technicians the ED personnel
repeatedly asked her about drug and alcohol use It wasnrsquot until she had been in
the ED for a number of hours that a MRI scan of her brain was ordered and her
stroke was diagnosed
hellip They kept asking me questions like that And Irsquom like no nohellip theyhellip never even went to the whole stroke thing for until like way later They didnrsquot pinpoint it as what was wrong with me because I couldnrsquot tell them how I felt what was going on or anything like that And since because I am 34 they werenrsquot even thinking about that That wasnrsquot considered an option in what was wrong with me right then
143
Kenzie
ldquoAs women we work throughrdquo
I fist met 57 year old Kenzie at a stroke support group meeting about five
weeks after her stroke She was with her husband and they were sitting side by
side her husbandrsquos body leaning in toward Kenzie This was their first meeting at
the group and I got the impression that they felt vulnerable Kenzie was the only
woman at the group and when she mentioned her belief that her stroke started a
week prior to her admission to the hospital I hoped she would call to volunteer for
the study In this respect Kenziersquos story would be different from the previous four
women I had interviewed all of whom had been admitted to the hospital within 24
hours of the time they first noticed their symptoms
The story of Kenziersquos stroke began on a Friday evening shortly after she
returned home from dinner out with her husband ldquoI just donrsquot feel rightrdquo Kenzie
remembers telling her husband when she lifted her head from the back of a chair
and the room started to spin Her husband Seth suggested that she stop watching
TV and ay go on to bed since it was already 1030 pm and she had had a difficult d
Kenzie is a kindergarten teacher and she had been having a particularly
challenging year at school She was not happy with her new assignment to teach
kindergarten instead of her preferred fourth grade and she attributed this change
in classroom assignment to interpersonal conflicts with her principal She also had
an unusually difficult student in her class that term and she felt unsupported by
144
the principal in her handling of issues related to this student Referring to her
conflicts with the principal Kenzie recalled that on the day she developed her
symptoms she had ldquonever been so angry at human being in my liferdquo Later on
Kenzie would attribute her stroke to work stress
Kenzie went to bed but felt no better when she awoke on Saturday morning
Every time she lifted her head from the pillow the ldquowhole world was spinningrdquo in a
counter clockwise direction She felt very nauseous when this happened Seth
blamed her symptoms on food poisoning from the catfish she had eaten the
evening before and he brought water to her
Kenzie stayed in bed all Saturday and Sunday When she got out of bed to
go to the bathroom it was difficult to traverse the short distance from her bed ldquoI
would find myself disoriented and I would have to hold the wallhellip I knew where
the bathroom was but getting there I had to feel my wayrdquo Kenzie said She called
the process of feeling her way to the bathroom ldquofurniture walkrdquo and recalled that
this was the way her mother had navigated through the house in her elder years
You sit on the side of the bed and you feel the bed and then I stand up and I feel the bed as I go around and as soon as I get to the corner ‐ not the corner on my side but the corner on my husbandrsquos side of the bed ‐ I reach out with my left hand for the wall because I know itrsquos right therehellip I kind of furniture alked my way to the door of the bathroom where I grab the door and the w
145
counter and make it to the toilet Kenzie kept her eyes shut while she ldquofurniture walkedrdquo to the bathroom
ldquoItrsquos weird Itrsquos strangehellipbecause you know automatically the first thing you do
when you wake up is your eyes open No No I would close them I didnrsquot want to
see that spinning world It made my stomach worse I thought oh geeze Irsquom going
to throw up for sure nowrdquo
On Monday morning Seth decided that she must not have food poisoning
because her symptoms had lasted too long and he suggested she go to the doctor
After he left for work Kenzie called in sick and then phoned a friend to drive her to
the doctor It was very difficult to function with the world spinning and the nausea
ldquoIrsquom not the kind of person to go out the door without my clothes on but I wore my
pajamas and my robe and my slippers to the doctorrsquos thatrsquos how bad I wasrdquo
Kenzie had heard of people having vertigo and wondered if that was what
she was experiencing She could not walk from the car into the clinic because of the
dizziness so her friend got a wheel chair Her doctor diagnosed a virus and
prescribed an anti‐nausea medication which her friend picked up at the pharmacy
on the way home The doctor said that she should be able to return to work on
Wednesday
Although things were no better on Wednesday morning Kenzie went to
work ldquoI was no better by any stretch of the imagination but the doctor told me I
would not be contagious by thenrdquo Kenziersquos decision to return to work despite her
continued symptoms was influenced not only by her physicianrsquos opinion that she
would be able to do so but by her strong work ethic which was inherited from her
parents
146
Her father was a Native American gentleman who had carotid artery
disease and transient ischemic attacks Kenzie recalled that ldquohe worked all the
time all the time through all these little strokes he workedhellipSo I come from
strong stock that has a very high work ethic and so unless yoursquore actually on your
back down and out yoursquore at workrdquo Kenzie was aware of the contradiction
between this statement and her actions and laughed at herself after she said this
because she was in fact on her back when she made the decision to return to work
on Wednesday
Kenzie also attributed her tendency to work though illness to the example
set by her ldquovery strongrdquo mother who was ldquonot the normal stay‐at‐home momrdquo Her
mother earned her masterrsquos degree in English in 1944 before she married Kenziersquos
father at a time when this was not all that common for women She also had served
in the army during World War II In addition to working throughout Kenziersquos
childhood her mother was one of the original members of the National
Organization for Women
Kenziersquos responses to illness and work were shaped by ideas about gender
roles ldquoIrsquove always workedhellipAnd you work through a lot of thing because you know
you have to Or you feel you have to We work through as women especially we
work thoughrdquo She contrasted womenrsquos responses to illness with those of men ldquoA
man gets a cold and hersquos on his back and you better be waiting on him hand and
foot A women gets a cold and we better be waiting on everyone else I think thatrsquos
147
the way it is I mean Irsquove always done thatrdquo she said Kenziersquos approach to illness
and work was exemplified by her response to a bad break of her ankle a few years
ago when she returned to work two days later on crutches despite still being in
considerable pain
Getting through the day at work on Wednesday was an immense struggle ldquoI
was running on pure will power It was horrible My head was spinning it was still
spinning but it was like I have to be here I have to be hererdquo Kenzie recalled
In addition to the vertigo and nausea Kenzie had an unusual sensation
when she walked ldquoI would walk I would feel like Irsquom stepping out and I wasnrsquot I
didnrsquot think I was stepping out You know how you know when you pick up your
feet up to walk Itrsquos like not feeling the same Not feeling the same when I put them
down It was just weird It was just not normal It was off kilter It was differentrdquo In
order to walk she felt as though she had to tell her feet what they were supposed
to do ldquoI would have to tell my feet Okay pick yourself up put yourself down Pick
yourself up put yourself downrdquo
Despite her symptoms Kenzie did not think of herself as really sick
When yoursquore sick you got a runny nose you got diarrhea or yoursquore throwing up Remember I work with little people When you get sick and you work with little people these are the things that you have You feel yucky because yoursquove either got a very bad cold or pink eye or the flu I idnrsquot have any of thathellip Irsquom like I donrsquot really feel sick I feel different but d
148
this isnrsquot my idea of sick Kenzie was at work again on Thursday struggling to carry on with her
teaching duties despite the sensation that the room was spinning That afternoon
during an in‐service meeting in the library two new symptoms appeared While
watching a film she noticed that something unusual was happening with her
vision Even though she was looking at the screen she had intermittent trouble
seeing it ldquoI could look at it constantly but I couldnrsquot see it constantly It was a
coming and going kind of thingrdquo she said ldquoIt felt like I had floatersrdquo
When Kenzie got up to go the restroom during the meeting she was aware
that she felt very weak ldquoMy dad used to have a term lsquofeel weak as a kittenrsquo And
thatrsquos how I felt I felt like Lord I hope I get better from this sickness because I
donrsquot think I can get any weakerrdquo she said The teachers at Kenziersquos school all have
a wheeled cart for their books and supplies and when Kenzie stood up at the end of
the meeting she felt as though her grip on the handle of the cart was the only thing
keeping her upright
The hallway from the library to the outside door of the school is very long
and wide Kenzie started down the hall feeling her way by keeping one hand on
the wall However soon she was bouncing back and forth from one side of the hall
to the other ldquoI bumped into both sides of the hall trying to walkrdquo she recalled ldquoI
was so I donrsquot even know what the right word is so uncoordinated I mean so
dizzyrdquo She likened her progress down the hall to that of a ldquodrunken sailorrdquo
She made it to a bench halfway between the library and the exit and had to
sit She asked the school secretary to walk her to her car because she was so dizzy
The secretary called the school nurse who came and took Kenziersquos blood pressure
149
This was the same nurse who had checked Kenziersquos blood pressure three months
earlier and found that it was high Kenzie had been treated for hypertension by her
family physician since then Her blood pressure was 13090 on Thursday which
was usual for her The nurse advised her to go home stay in bed and drink plenty
of fluids saying that whatever the doctor thought Kenzie had it had not yet run its
course The school secretary or the nurse called Kenziersquos daughter to drive her
home
As instructed by the school nurse Kenzie stayed home from work on Friday
and drank fluids In addition to the vertigo nausea and the sensation that she had
to consciously pick up her feet when she walked Kenzie continued to feel weak all
over At one point she was on the loveseat in her bedroom and it took her an hour
and a half to get from there to her bed ldquoI just didnrsquot have any energy I couldnrsquot get
uprdquo she recalled ldquoThis is weirdrdquo she remembers thinking She called her husband
to tell him how weak she was feeling He advised her to stay in bed and try to sleep
because sleep was the way the body healed itself When he got home he made her
some soup
It never occurred to Kenzie that her symptoms might indicate a stroke She
thought that the primary warning sign of a stroke would be very high blood
pressure She recalled hearing people say things like ldquoTheyrsquore going to have a
strokehellipItrsquos 200 over 140 or somethingrdquo The association of very elevated blood
pressure and risk of stroke also came from her experiences with her father ldquoWe
150
always took his blood pressure If it was above a certain level we hurried and got
him to the hospitalrdquo she said
If there were symptoms with a stroke Kenzie thought they would be similar
to those of a heart attack such as labored breathing or not being able to walk very
far ldquoNobody ever told me that yoursquod be dizzy and nauseatedrdquo she said ldquoThat was
not something I ever heardrdquo She also thought that feelings of extreme tiredness
would accompany a stroke She did feel very tired on Thursday afternoon but did
not focus on that symptom ldquoWell I was tired but I thought I was dizzy I was both
But the dizziness and the nausea were the two things that overshadowed
everything else I was feeling Everythingrdquo she said
The events that led to Kenziersquos arrival at the emergency room occurred on
Saturday morning when she fell to the ground and shortly thereafter received a
phone call from her mother‐in‐law ldquoI took one step on my right foot and went to
take a step on my left foot and hit the groundrdquo Kenziersquos first thought when this
occurred was that she had sustained a spontaneous fracture of a bone in her ankle
because she was overweight A friend who is overweight had once broken her
ankle in this manner ldquoThatrsquos what I thought as I was going downrdquo Kenzie said
While lying on the floor after her fall Kenzie noticed a sensation of tingling
in her left arm and leg and then realized that she no longer had control over the
left side of her body ldquoNothing workedrdquo she said Similar to when she talked to her
151
feet to make sure she was picking them up when she was walking Kenzie began to
send instructions to her body
I kept trying to send a message to my left arm Reach over and grab that TV stand and push yourself up off this floor It wasnrsquot reaching and grabbing nothing It was just kind of laying there like Irsquom not doing nothing It did not I couldnrsquot get the left side of my body to respond to conscious thought rocesses telling the left side of my body Hey you got to get up you know pCome on It wouldnrsquot work In contrast to her left side Kenziersquos right side was functioning normally
ldquoWorked without even you know knowledge that I was thinkingrdquo she said
Kenziersquos husband heard the crash when Kenzie fell to the floor and came
running to investigate He asked her what was wrong and she responded that she
didnrsquot know Seth helped her up and then took her blood pressure which he
thought was high although he wasnrsquot sure of the actual reading
In the midst of all this commotion they received a phone call from Kenziersquos
mother‐in‐law Kenzie described her symptoms to her mother‐in‐law who asked
to speak to Seth Kenzie could hear her talking loudly over the phone telling Seth
that he should get Kenzie to the emergency department now Kenzie later learned
that her mother‐in‐law thought that she might be having a stroke and Kenzie
assumed that her mother‐in‐law recognized the symptoms because she had cared
for a relative who had several strokes Kenzie still doesnrsquot know if her mother‐in‐
law voiced her suspicions about the possibility of stroke to Seth while they were
on the phone
152
Because her left leg would not support her weight Kenzie was unable to
walk unassisted to the car and Seth half‐carried her ldquoHe was my left siderdquo she
said On the way to the hospital Kenzie was very nauseated and was concerned
that she would vomit in her husbandrsquos car because he was ldquofinicky persnickety
about his carrdquo She believes she must have been in denial at that point because she
still thought she had a virus ldquoI thought I had a virus I was gonna get better it was
one of those where instead of taking two days it was going to take two weeksrdquo she
said ldquoI really thought I had a virusrdquo
En route to the hospital Seth suggested that they stop at the clinic Their
insurance company charges subscribers $100 for any visit to the emergency
department that does not result in hospital admission lsquoLetrsquos just check here lsquocause
if therersquos nothing really wrong with you therersquos no reason to drive all the way up
there and pay a hundred dollars to them for no reasonrsquo she recalls her husband
saying
At the clinic someone ndash either a nurse or an assistant ndash took Kenziersquos blood
pressure Although this individual offered the couple a 1 pm appointment with
the doctor she advised the couple to go to the emergency department at once and
offered to call an ambulance Her husband decided that he would drive to the
hospital
Once they arrived at the hospital Seth got a wheelchair to transport Kenzie
inside A nurse took her blood pressure and then brought her straight back to an
153
examining room Although Kenzie had not been in an emergency department many
times in her life she was aware that this was not usual ldquoYou wait a while unless
you are bleeding to death or something You know you usually waitrdquo she said
The hospital physician was of the opinion that Kenzie had her stroke on
Thursday afternoon during the in‐service meeting when she felt very weak and
noticed changes in her vision However Kenzie wondered what her body was
trying to tell her with the vertigo that began the previous Friday night ldquoIrsquove
wondered if it was two strokes or was it one stroke Was it one week of getting
yourself to the doctor so you can do something about this And finally my body
says Irsquove put up with all I can You didnrsquot do what I needed done Irsquom going to make
you do what needs to be donerdquo She said that no physician had ever satisfactorily
explained the reason for her vertigo or its association with her stroke
Although Kenzie said she did not blame her doctor for not identifying her
symptoms as those of a stroke she seemed frustrated and somewhat angry that he
had not done so She attributed his diagnosis of a virus to his lack of training to
recognize vertigo as a symptom of stroke When she reflected back on the week
preceding her admission to the hospital Kenzie concluded that people hadnrsquot
really listened to her and that her symptoms were dismissed ldquoPeople just donrsquot
listen They donrsquot want to hearrdquo she said ldquoItrsquos like when you have a stroke itrsquos
supposed to boom happen right now and thatrsquos it And it didnrsquot seem to happen
that wayrdquo
154
Ellen
ldquoIt was weird not being able to dohellipwhat I wanted tordquo
When I called the number on a response card I received in the mail the
person on the other end of the phone identified herself as the mother of a woman
named Ellen who was interested in the study but was still in the hospital She
started telling me about Ellen describing her as ldquomanipulativerdquo and questioning
whether her post‐stroke communication difficulties were real I didnrsquot know what
to make of this information or what to expect a month later when I went to meet
Ellen for the first time
Since her discharge from the hospital 41 year old Ellen had been living with
her mother in her motherrsquos trailer in a semi‐rural area of the state When she
greeted me at the door of the trailer Ellen spoke in a low flat voice without
alterations in tone or inflection It was slightly difficult to understand her at first
because her voice had a ldquoblurryrdquo or indistinct quality but by listening carefully I
was soon able to understand everything Ellen said The lack of inflection in her
voice extended to expression of humor and when Ellen laughed it sounded
phonetically as ldquoHa Ha Hardquo Her face had little expression either in repose or
when she was speaking with me which I found slightly disorienting at first Our
encounters were a reminder for me of the extent to which communication occurs
not only through verbalizing but through facial expressions
155
At the time of her stroke Ellen was working as a live‐in caregiver for an
elderly woman who had cancer emphysema and a previous history of a stroke
Ellen herself has diabetes and just one month before her own stroke she was
hospitalized for diabetic ketoacidosis At about 10 pm the night before she was
admitted to the hospital for her stroke Ellen was lying on the couch in the living
room of her clientrsquos house It had been her intention to check on her client who she
had heard moving around in the kitchen when she realized she was unable to get
up from the couch As she described this episode it was unclear if Ellenrsquos difficulty
getting up from the couch was due to a generalized feeling of weakness or a
problem coordinating her movements ldquoI was laying down watching TV and I felt
something and I couldnrsquot sit up and I had trouble sitting up I was real weak no
matter what side I laid on I didnrsquot know what was wrong with mehellip I felt like I was
stuck to the couch I couldnrsquot get out of itrdquo she said
Several times during the interviews when Ellen spoke about being stuck on
the couch she began to cry This was the only time during my three visits with her
that her face expressed emotion On these occasions she had been talking
expressionlessly and then her face suddenly crumpled into a manifestation of
distress At one point she held her T‐shirt in front of her face and cried into it
When this happened I asked if she would like to stop the interview but on both
occasions Ellen said she wanted to continue The second time this happened Ellen
told me she had been experiencing episodes since her stroke when she would get
156
emotional and cry She said her physician attributed this to the effects of the stroke
on her brain
On trying to describe what it had felt like to be stuck to the couch Ellen
said ldquoIt just felt weird I tried laying on this side and I had a hard time getting up I
layed on this side and I had a hard time getting uprdquo Eventually she was able to get
on her feet but this usually routine action required both thought and effort ldquoI had
to work my way up instead of just sitting up like I normally wouldrdquo she said ldquoI got
up eventually but it was not the way I wanted tohellip I used both handshellip I slid off the
couch and was able to get up off the floorrdquo
Ellen knew there was something wrong with her but she didnrsquot have any
idea about what it could me ldquoI didnrsquot know what was wrong I didnrsquot know what
was happeningrdquo she said During the first interview she seemed to indicate she
thought she might have done something that resulted in her difficulty getting up
from the couch ldquoI just thought I had done something where I couldnrsquot get up I
thought I had done something [long pause] wrongrdquo This was one of the occasions
when Ellen began to cry and I didnrsquot pursue this topic During the second interview
when I asked Ellen what she meant when she said she might have ldquodone something
wrongrdquo she said she didnrsquot remember and then began to cry
Once she was on her feet Ellen was aware that her right arm ldquowas feeling
weirdrdquo Her right hand and arm felt ldquotinglyrdquo and ldquonumbrdquo ldquoI had no sensation at all
in my armhellip ldquoI couldnrsquot feel ithellip It felt like my arm was deadrdquo she recalled
157
Ellen made her way to her clientrsquos room but was hampered by a feeling of
dizziness and instability as she walked ldquoI was real dizzy and I had a hard time
walkinghellip I had to hold on to the walls and to the cabinetsrdquo she said She had been
experiencing this same sensation for the past month since her discharge from the
hospital for diabetic ketoacidosis ldquoIt [dizziness] was all day every dayrdquo Ellen
recalled She attributed several recent falls to her dizziness It was only when she
lay down that she obtained relief
During the past month Ellen had assumed that the dizziness was due to a
new diabetes medication ldquoI thought it was just the medication that they had me on
for diabetes cause you know medications sometimes has that couple weeks it takes
to get used to stuffrdquo she said Ellen said she mentioned this dizzy feeling to her
mother and to her clientrsquos son both of whom are nurses and when neither of these
individuals offered an opinion as to the cause of the dizziness she assumed they
thought as did she the new medication was to blame Later while hospitalized for
her stroke a doctor told her the dizziness was related to her stroke ldquoThey think I
had the stroke back thenrdquo she said
By the time Ellen was able to get to her client she was back in her room and
asleep in bed After Ellen went to the kitchen and got something to drink she
discovered she was having difficulty carrying out simple tasks such as picking up
or setting down objects She described ldquoeverything [as] off kilter Her difficulties
picking up and setting down objects seemed related to her inability to accurately
158
judge the distance between herself and things in her environment Ellen made
grabbing‐at‐air motions with her hands to illustrate how she would reach for an
object and discover she was not making contact with it
At times during the interviews Ellen seemed to have difficulty finding the
words to describe her experiences and she often moved her hands rapidly from
side to side while she was searching for words Although Ellen said that the
experience of misjudging distance was hard for her describe her demonstration
coupled with her verbal description gave me a good sense of what this symptom
had been like for her ldquoEverything I reached for was too far awayhellip Everything was
off Nothing was in the right placehellipThey [objects] were in the right place but they
werenrsquot They were where they were supposed to be but in my mind they were
differentrdquo she said
This symptom made it hard for Ellen to carry out what she intended to do
ldquoIt was hard to find things It was hard to find the remote I would see it someplace
on the table but I couldnrsquot reach it And I spilt medicine I spilt my tea I went to set
it down and I missed the table and spilled my tea all in the floor Everything was
differentrdquo
Ellen returned to the living room to watch TV It was then that she noticed
something odd about the appearance of the TV and other light sources in the room
ldquoIt was like there was a ring around everything It was weird Everything had a
kind of a ring around ithellipIt was just like there was brightness aroundhellipanything
159
with light It was around the windows around the TV lampsrdquo she said The halos
got smaller after a while she recalled Her perception about the size of objects also
was off and for a time the TV screen appeared smaller than usual
The prospect of being stuck on the couch again frightened Ellen and she
was reluctant to lie down and go to sleep that night ldquoI was scared I guess I was
scared that it would happen againrdquo She ended up staying awake all night sitting on
the couch and watching TV ldquoI was scared cause I felt like if I laid down I wouldnrsquot
be able to get up and I didnrsquot know what was wrong I didnrsquot know why I couldnrsquot
get up And I didnrsquot know why anything was going on I sat there and watched TV
and tried to lose myself in the TV but I kept getting scared because I was getting
sleepy watching TV I was just scared to fall asleeprdquo she said
Of all the things that were happening to her that evening Ellen said ldquobeing
plastered to the couch scared me more than anythingrdquo It seemed that her inability
to get up off the couch was threatening to Ellen in a way that her other symptoms
were not In response to my question about why this particular symptom caused
her such fear she replied ldquoI couldnrsquot figure out why I couldnrsquot get off the couchrdquo
When I returned to the reason for her fear in the second interview she deflected
my question and began to talk about her diabetes I concluded that not having an
explanation for being stuck to the couch was only part of her response to this
particular symptom because she had said that she didnrsquot know why any of these
ldquoweirdrdquo things were happening to her
160
When daylight came Ellenrsquos described her body as feeling ldquoweak and
weirdrdquo Although she no longer noticed any unusual visual symptoms her right
arm and hand were still numb and the sensation of dizziness she had been feeling
for the past month was still present Despite the numbness Ellen had functional
use of her hand and arm ldquoIt felt weird It felt like my arm was dead It was just real
weird I could still move all my fingers and move my hand and stuff but I couldnrsquot
feel it It felt weird I had no sensation at all in my armrdquo she recalled ldquoIt [arm]
worked okay I just couldnrsquot feel anythingrdquo
Ellen started with her usual morning activities When I asked what it was
like to do that with her symptoms Ellen explained matter‐of‐factly that she was
used to functioning with the dizziness since it had been going on for a month and
in any event cooking breakfast was a routine and familiar task ldquoI was like that a
lot you knowrdquo she said referring to the dizziness ldquoIt [cooking breakfast] was like
a drill lsquocause I did it all the timerdquo she said ldquoI felt dizzy but it didnrsquot affect me lsquocause
the kitchen was real close quarters and I was able to stand there and hold on to
everythingrdquo Ellen managed her clientrsquos morning sponge bath in the same way she
cooked breakfast adapting to her symptoms in order to carry on with her tasks ldquoI
was able to hold on to stuff in there [bathroom] while I did itrdquo she said
In saying that her symptoms ldquodidnrsquot affect merdquo Ellen seemed to be
indicating that physical changes would have to prevent her from accomplishing
her activities in order to ldquoaffectrdquo her This perhaps explained why she had
161
responded with such fear the evening before when she found herself stuck on the
couch for a time she was prevented from doing anything that she intended to do
Her other symptoms such as her numb arm and dizziness hampered her ability to
carry out her activities but did not completely prevent her from doing so
Ellen had several opportunities that day to tell someone about her
symptoms As was his habit her clientrsquos son came early in the morning to visit his
mother Ellen prepared fried eggs and toast for her clientrsquos breakfast while he was
there She did not tell him about her symptoms and attributed not doing so to the
fact that ldquotoo much was going onrdquo with her client at that time Again I thought
about the importance Ellen placed on being able to carry out her activities and
wondered if the reason she did not tell him about her symptoms was because she
was able to cook breakfast She mentioned ldquohe didnrsquot say anything about merdquo
which I understood to indicate that her clientrsquos son did not notice any difference in
the way that she was carrying out her duties as caregiver Because he did not
notice anything she was not inclined to tell her about her symptoms
After she had her stroke Ellen realized that her speech had been affected
that morning although she was unaware of this at the time ldquoI was able to make
her [client] understand to take her clothes off so that I could bathe her But she had
a hard time understanding merdquo she said At the time Ellen attributed this
communicative difficulty to her client ldquoShe [client] kept saying she couldnrsquot
162
understand me and I thought it was just she was having a hard time I didnrsquot know
that it was because of merdquo Ellen said
After breakfast and her sponge bath Ellenrsquos client went back to bed for a
rest Ellen sat on the couch and dozed The second opportunity to tell someone
about her symptoms came at about 1130 am when a home health aide arrived to
prepar e and serve lunch to her client Ellen did not tell her what was going on
It was Ellenrsquos mother who got her to the hospital Her mother is Ellenrsquos
clientrsquos Hospice nurse and she arrived for a regularly scheduled visit at about 2
pm ldquoWhen my mom came I told her what I felt the night before and that dayhellip I
told her I was having trouble with stuffhelliprdquo Ellen recalled ldquoShe went ahead and
helped her [client] and then she took to me to the ERrdquo When they arrived at the
emergency department at about 330 pm Ellen said that she knew something was
wrong because she was taken back to an exam room right away ldquoI didnrsquot have to
sit and wait If somethingrsquos bad they take you right backrdquo
163
Louise
ldquoI thought it was an everyday pain or somethingrdquo
Eight‐six year old Louise looked very small in the bed at the assisted living
and extended care center where she had been living since her stroke a few months
before Her eyes were bright and she had a very sweet way about her She was
widowed about ten months before we met and spoke with sadness about her
husbandrsquos passing Louise has four children and one of her two daughters was
present at each interview Louise has age‐related hearing loss and since her stroke
has not had her hearing aides in Although there were a few times when I had to
repeat a question on the whole we did not have difficulty conversing Her
daughters stepped in occasionally to add something to Louisersquos account or to
repeat something I said that Louise had difficulty hearing but I did not find their
presence intrusive
Before her stroke Louise lived in her home with her 54 year old son When
I asked her what a typical day had been like for her Louise described busy days
filled with housework shopping and cooking ldquoI could just do anything I wanted to
dordquo she said She especially liked to cook and told me about her familyrsquos favorite
dishes Louise took medication for hypertension and atrial fibrillation and
considered herself in good health Louise seemed unaware that both these health
conditions put her at risk for stroke She described herself as surprised and upset
164
when the doctors at the hospital told her she was having a stroke ldquoI didnrsquot think
anything like this would happen to merdquo she said
During the week before Louise was hospitalized for her stroke she had
noticed ldquoa kind of tingling or something in my fingersrdquo which she also described as
a ldquonumbrdquo feeling During this week there also were times when her face ldquowould
feel drawnrdquo I looked up the definition of drawn in the dictionary and learned that
one of its meanings was to move something by pulling (httpwwwmerriam‐
webstercom) which seemed consistent with what Louise was describing Louise
also had the perception of a change in how she was talking ldquoIt was getting hard for
me to talkrdquo she recalled ldquoMy words wouldnrsquot come out like they shouldrdquo
Although Louise thought that ldquosomething wasnrsquot just rightrdquo she did not
view these occurrences as indications of something serious ldquoI didnrsquot think
anything about ithellip I didnrsquot think that there was anything was wrong lsquocause I still
remembered everythingrdquo In Louisersquos assessment something was ldquowrongrdquo if her
mind was not working properly and one indication of that would be problems with
her memory In addition Louise had experienced episodes in the past where her
arm or fingers tingled for a while Because these occasions were short lived she
did not view a reoccurrence as indicative that anything was wrong ldquoNo I didnrsquot
because I thought itrsquos just some little something you knowrdquo
Louise was at home alone the evening of her stroke She estimated that her
son who was visiting a friend had not been gone for very long when she
165
developed the symptoms that led to her admission to the hospital At about 830
pm she was in the kitchen getting a Coke when she became aware that one side of
her face ldquokind of felt funny I yawned and it seemed like it just pulledrdquo Louise used
the word ldquodrawingrdquo to further describe this sensation She decided she should tell
her son ldquotherersquos something wrong with my facerdquo when he returned home because
ldquoit wasnrsquot right for my face to feel like [that]rdquo
In addition to the sensation that her face was ldquodrawingrdquo Louisersquos left arm
ldquofelt funny and just like tinglyhellip just like yoursquove had your hand to go to sleeprdquo She
recalls that she didnrsquot have a problem moving her left arm at this time and the fact
that she was able to do so was indicative to her that nothing was seriously wrong
with her arm ldquoThatrsquos why I really didnrsquot think there was anything wrong I could
use my limbs I could still use my arm It wasnrsquot bothering merdquo
Shortly thereafter Louise became aware that her legs felt weak and numb
ldquoThey felt they didnrsquot feel like they had any feeling in themrdquo This latter symptom
did cause Louise concern She had fallen in her kitchen five months before and
sustained a bad bruise on her hip Afraid that she might fall Louise decided to lie
down ldquoI just I had that feeling that maybe I might fall or somethingrdquo On the way
to her bedroom Louise grabbed a pillow off the couch in the living room I was
curious about her reason for getting the pillow from the couch and when I asked
her why she did this she laughed and said ldquoI donrsquot know why I got the pillow but I
didrdquo
166
When she reached her bedroom Louise felt as though she couldnrsquot make it
across the room to her bed because of the weakness in her legs and so she decided
to lie down on the floor It was at this point Louise said ldquoI kind of really felt that
something might be wrongrdquo As Louise lay on the floor she prayed ldquolsquoLord take care
of mersquo I knew He wouldnrsquot let me downrdquo She said she prayed because ldquoI knew I
wasnrsquot supposed to feel this wayrdquo
Louise still did not consider her symptoms serious even though she felt
that something was wrong I asked her to tell me more about this and this was one
of only a few occasions when I wondered if perhaps Louisersquos hearing difficulties
placed us at cross purposes Louisersquos answers to my questions revealed that she
thought her symptoms although possibly indicative of something wrong might
also be temporary and thus not serious With the exception of the weakness in her
legs the bodily sensations she was experiencing were the very much the ones that
occurred during the previous week and which had gone away ldquoI thought it was
something that would just go awayrdquo she said
Another reason Louise may have thought her symptoms might go away was
that she seemed to view some of these sensations as every day occurrences ldquoIt
seems like a lot of time my arm would go to sleep you know I didnrsquot think
anything about it cause I thought thatrsquos just an every day thinghellipI thought it was an
everyday pain or somethingrdquo
167
Louisersquos daughter estimated that her brother arrived home about an hour
after the onset of her motherrsquos symptoms Louise became animated when she
described her sonrsquos reaction to finding her on the floor ldquoOh he was scared to
death He said lsquoMother Mother what are you doing down on that floor Mother
are you alrightrsquo He said lsquoIrsquom going to call the ambulance right nowrsquo And I said lsquoNo
donrsquot do it Irsquoll be okayrsquordquo
If an ambulance was called this meant that Louise would have to ldquogo to the
hospital or somethingrdquo Louise described herself as someone who went to the
doctor for checkups for her blood pressure but with that exception she would
have to ldquobe pretty sick to go to a doctorrdquo I thought perhaps ldquoor somethingrdquo meant
that she was indeed ldquopretty sickrdquo
Louise also thought that since she didnrsquot feel bad the night of her stroke she
didnrsquot need to go to the hospital ldquoI thought I donrsquot know why I have to go to the
hospital because I donrsquot feel bad at allrdquo It took several questions for me to reach
the understanding that for Louise ldquofeeling badrdquo had less to do with the type of
physical change she was experiencing than her ability to carry out her routine
activities ldquoI feel bad when I canrsquot get up and do anythingrdquo she said At this point
one of Louisersquos daughters entered the conversation to add that even in her elder
years Louise was always busy with household activities though she had recently
slowed down a bit Louise concurred with this description ldquoI didnrsquot believe in just
sitting down I was always busy doing somethingrdquo she said
168
I wondered if perhaps Louisersquos symptoms did not rise to the level of feeling
ldquobadrdquo because they occurred during the evening when she was not engaged in
household activities Perhaps if her stroke had occurred in the morning when she
was working around the house she would have had a different evaluation of her
symptoms
Although Louise said that it was her son who called EMS her youngest
daughter Diane told us during the interview that it was she who had done so
Diane had received a phone call from her brother after he found their mother on
the floor during which he told Diane about the state in which he found their
mother Diane immediately drove to her motherrsquos house and she estimated that
she arrived at about 10 pm
Diane works as an administrative assistant at a hospital recently certified as
a Primary Stroke Center All hospital employees wear ID badges on the back of
which are listed the signs of stroke When Diane arrived at her motherrsquos house she
assessed her mother with those indicators in mind ldquoWhen I got there I knew what
to ask I looked at her face and she had facial drooping And I asked her to talk to
me I said lsquoI donrsquot care what you say just say something to mersquo And her speech
was slurred And I asked her lsquoRaise your arms uprsquo And she could only raise one So
I knew she had a stroke so I called 911rdquo
169
Natalie
ldquoI couldnrsquot put the pieces of the puzzle togetherrdquo
Natalie is a 57year old African American woman who has lived with her 30
year old son his wife and their two children since she was discharged from a
hospital rehabilitation unit after her stroke ten months previously She described
herself as a person who is ldquoalways doing for somebody elserdquo and who prior to her
stroke was very involved with her church helping with her grandchildren and
visiting elderly neighbors and church members who needed Her busy life includes
working full time and Natalie spoke with pride about the fact that she has worked
since she was 16 Natalie characterized her stroke as so severe that she could not
feed her self or perform basic self‐care activities at first and she attributed her
recover oodrdquo y to her faith in God ldquoGod is goodrdquo she repeatedly told me ldquoHe is g
Although Natalie thought her symptoms began a week prior to her
diagnosis she believed signs were present as far back as seven or eight months
when there were ldquostrange things happeningrdquo These strange happenings included
brief episodes in which her right arm would momentarily lose strength tingling in
her right calf and worsening of an existing speech impediment that caused her to
stutter Prior to her stroke Natalie worked in food services at a Veterans
Administration hospital and after she dropped several trays of her supervisor
asked what was going on and suggested that Natalie see a doctor about her arm
Natalie wondered if she could have carpel tunnel syndrome but never checked into
170
this She attributed her leg tingling to poor circulation Although the arm weakness
and right calf tingling seemed to go away Natalie continued to be aware that in
order to speak she had to slow down and ldquoget togetherrdquo before she expressed
herself
Natalie speculated that she had not thought that these occurrences were
indicative of a health problem because ldquoyou donrsquot think bad thingsrdquo By this she
meant that if you think negative things they might be drawn to you She also
thought of bad things as happening to someone else and indicated that this way of
thinking was a common tendency of human beings
About a week before she was diagnosed with a stroke Natalie developed a
headache that just would not go away despite taking over counter analgesicanti‐
inflammatory medication ldquoIt would ease down a little bit and then it would spring
back up againrdquo she recalled This was unusual because Natalie did not get often
have headaches and when she did one aspirin was enough to banish the
discomfort At first this headache felt like ldquoa normal headacherdquo but after a few days
the character of the headache changed and it seemed to be all over her head and
causing her head to swell Natalie even checked her reflection in the mirror a few
times to see if her head looked bigger
Around the time she developed the headache Natalie also began feeling
very tired so much so that she went to bed right after finishing the day shift at 2
pm on Thursday and Friday and both days she pretty much stayed there until the
171
next morning She described her tiredness as lacking enough energy to do what
she wanted ldquoMy body wouldnrsquot give me the satisfaction to do what my mind was
telling me that I wanted to do or I would like to do or I needed to dordquo she said She
described this feeling as not having ldquoget up and gordquo
ldquoThis is not normalrdquo Natalie remembered thinking when resting after work
for a few days didnrsquot alleviate her tiredness She decided to spend her next days off
sleeping and resting ldquoinstead of visitingrdquo in the hope that she would feel better In
addition to visiting neighbors and church acquaintances and working full time
Natalie lately had worked some double shifts and extra days at work because the
food service staff was shorthanded She wondered if the ldquopressurerdquo of all these
various activities could have contributed to her stroke She had heard from other
people that being under pressure could cause a stroke
With her days off not until Tuesday and Wednesday of the next week
Natalie soldiered on at work over the weekend despite the persistent feeling of
tiredness Several more ldquostrangerdquo things occurred on Saturday one of which she
learned about from a co‐worker after her stroke This co‐worker said Natalie had
been moving her lips as though talking but no sound came out of her mouth At the
time the co‐worker associated this behavior with Nataliersquos tendency to stutter The
other strange happening was an instance in which Natalie lost her balance causing
her to crash against a door When another co‐worker asked what was going on
Natalie attributed this episode to ldquotripping over [her] footrdquo
172
Although Natalie felt even more tired on Monday morning she went to
work ldquoI donrsquot know why I went to work but I did I donrsquot know how I went but I
didrdquo she said ldquoLordrdquo she recalls saying ldquoif I can only make the day I will see about
going to a doctorrdquo Natalie was reluctant to call in sick because of VA policies that
discourage employees from calling in sick prior to scheduled days off If an
employee does so they are subject to ldquosick leave counselrdquo which meant they must
meet with someone from administration Sick leave counseling was a warning to
employees that they should not abuse sick leave and this was something Natalie
wanted to avoid because she felt that it did not reflect well on her performance as
an employee
Natalie began searching for reasons for her tiredness and her headache She
wondered if she was tired because she hadnrsquot eaten enough over the weekend
Natalie has diabetes and knew that it was important to take in enough food to
balance her insulin injections For some reason her appetite was down over the
weekend and she had a can of Glucernacopy after work instead of dinner Natalie had
been checking her blood sugars as usual two or three times a day and because her
readings were in the normal range she didnrsquot think eating less was the source of
her tiredness She wondered if the headache could be due to her high blood
pressure but concluded this was unlikely because she was talking her
hypertension medication Natalie next thought about tooth problems causing her
head to hurt but again concluded this wasnrsquot the cause of her headache because
173
her teeth were not bothering her Then Natalie speculated that the continued
headache could be associated with eating pork chops at work but she thought this
unlikely since she had only a small portion Nataliersquos belief that people with high
blood pressure who eat pork could develop a headache was something she had
heard all her life from female relatives and other women in the African American
community She wasnrsquot sure why pork might cause a headache in persons with
high blood pressure but this was an idea she had always held
With no satisfactory explanation for her headache and tiredness Natalie
spent her day off on Tuesday at home resting ldquoI thought I could fix thisrdquo she
recalled ldquoby restingrdquo
Nataliersquos sister is a nurse and although on occasion Natalie has sought her
advice when something was going on with her body she didnrsquot do so this time
Natalie and her sister talk almost daily on the phone but Natalie doesnrsquot remember
if they did so during this time Her sister had been working the night shift at the
hospital and Natalie speculated if they had not talked to one another that could
have been the reason Even if they had talked Natalie might not have told her
sister about her tiredness and headache Natalie described herself as a person who
doesnrsquot like to burden other with her problems ldquoI try to solve problems by myselfrdquo
she said In addition to the value she placed on being self‐reliant Natalie doesnrsquot
like to
174
complain about physical symptoms
Irsquove been around a lot of sick people I mean sick sick sick Those people never complain And a person with a headache they knee hurt they back
hurt they hand hurthellipand they just complain complain and complain I ade up within my mind I said whatever I have to deal with I will deal m
with Irsquom not complaining about nothing Nataliersquos reluctance to ldquocomplainrdquo to her sister also was an instance of not
wanting to ldquothink bad thingsrdquo and ldquodraw thingsrdquo to herself
It never occurred to Natalie that her symptoms were serious Nor did she
consider her self as sick I asked Natalie what sick meant to her and she responded
that sick meant pain in a part of her body other than a headache or a cough and
especially when these symptoms were not getting better after three or four days
Natalie cited flu as an example of being sick when muscle aches and a cough
tended to linger In keeping with these ideas Natalie hadnrsquot felt sick for the past
five days ldquoI just felt tired and weakrdquo she said The fact that her symptoms were
less pronounced when she was resting contributed to Nataliersquos perception that she
was not sick ldquohellipwhen I sat down I was okayhellipI just felt relieved when I was
sittingrdquo she said Because she felt better when she was at rest Natalie
characterized the pattern of her symptoms as easing up and then coming back
rather than progressive or not getting any better The latter pattern she said
would indicate the need to see a doctor She also said she just kept expecting her
symptoms to go away
On Wednesday morning Natalie felt even worse ldquoI just felt likehellipthe day
was up I just felt tiredrdquo She characterized her tiredness on Wednesday morning as
not having ldquostrength enoughrdquo and she recalls wondering ldquoWhatrsquos happening Irsquom
175
going to bed early every night and Irsquom still tiredrdquo After sitting on the edge of her
bed for a while Natalie had to lie back down for about 20 minutes Eventually she
made herself get up because she remembered she had to pay her water bill When
she started to walk she lost her balance and had to catch hold of a chair to keep
from falling From the chair Natalie grabbed on to the doorframe and then
supported herself as she walked down the hall by holding onto the walls It was
she said ldquojust like somebody starting out walkingrdquo
The extent of her fatigue caused Natalie to wonder if her ldquosugar was acting
uprdquo When Natalie checked her blood sugar it was fine and so she concluded that
perhaps she needed to eat something Making breakfast was hard due to her
weakness and Natalie she had to lean on the counter to do so After eating and
while sitting in the kitchen Natalie felt a bit better but the moment she started to
walk to her bedroom to get dressed a feeling of great fatigue came over her again
ldquoBoy something strange is going onrdquo she recalled thinking ldquoI say mercy I didnrsquot
know I was this tiredhellipAll I wanted to do was just lay downrdquo
The headache which had never completely gone away since it began the
previous Thursday was very bad that morning ldquoI was almost blind my head was
hurting so badrdquo The headache now was more localized and it felt as though
someone was pushing against the back of her skull Natalie decided to take her
blood pressure suspecting it would be ldquosky highrdquo because of the way her head was
hurting She was surprised when she got a normal reading which she remembered
176
as ldquo120 over somethingrdquo Natalie put a cold towel on her head in an attempt to
alleviate the pain and went back to bed
After about three hours of rest Natalie got up determined to pay her water
bill It was overdue and Natalie was concerned that if she didnrsquot pay it her water
might be turned off Getting dressed ldquotook foreverrdquo because she was so ldquotired and
weakrdquo Natalie recalled that she started to talk to herself at this point ldquoI say to
myself I say things arenrsquot working this morninghellipBoy I ainrsquot ever been this tiredrdquo
Natalie believes she was talking to herself that morning in order to compensate for
the fact that her mind was not working as usual ldquoIt got harder and harder to think
so I talk out loud I talked to myself to help me thinkrdquo
Although the drive from her apartment to the city water department was a
familiar one Natalie had to deliberately think through how to get there
ldquoNormallyrdquo she said ldquoI just gordquo By concentrating on her route Natalie reached the
water office went through the drive‐through window and paid her bill and then
started back home It was during the drive home that Natalie suddenly became
aware that nothing looked familiar ldquoEverything just looked different to merdquo she
recalled ldquoIt was kind of like you kidnapped somebody and take them off
somewhere and just dropped them offhellip I felt like I was in a town Irsquove never been
in beforerdquo Natalie knew it was not normal that her surrounding were totally
unfamiliar to her and she felt frightened and began to talk to God ldquoI just thought
Lord if you help me just lead me and guide mehellip homerdquo
177
She characterized this episode as a time ldquowhen her mind just kind of went
awayhellip for a few minutesrdquo Natalie decided the best course of action was to keep
driving until she recognized something familiar As she slowly drove along trying
to attach a memory to the various places she passed Natalie described her self as
being ldquoin my own worldrdquo Eventually Natalie recognized a grocery store and from
that landmark she knew her location and in which direction was home Somewhat
relieved but still frightened she headed for her apartment Her car started to
swerve and Natalie realized that her right hand had slipped off the steering wheel
causing the car to veer to the left ldquoMy arm had no strengthrdquo she recalled Several
times she used her left hand to place her right hand back on the steering wheel
only to have it slip off again Natalie marveled at how ldquotired and weakrdquo she was
She slowed her speed change her route to smaller less traveled streets and ldquojust
let me car go at itrsquos own pacerdquo she recalled Natalie began to talk to God once again
ldquoLord just help me make it homerdquo
It was when Natalie reached home that she realized something was wrong
with her right leg which wouldnrsquot move when she went to get out of the car She
had to use her left hand to lift her leg and set it down on the ground She connected
this new symptom to the tiredness that had been plaguing her for the past week
ldquoLordrdquo she said ldquoWhat is going on I didnrsquot know I was that tiredrdquo
The distance from the car to the door of Nataliersquos apartment seemed much
greater than usual and she made her way there by first clinging to the hood of the
178
car and then using the outside walls of the building for support She recalled that
ldquoIt seemed like days went byrdquo until she reached her door When telling this part of
her story Natalie remarked that none of her neighbors were outside and if they
had been ldquothey would have known something was going onrdquo I wondered if this
statement reflected her wish for someone to step in and help her A bit later in her
story Natalie recalled that when her son arrived to bring her to the hospital later
that afternoon she felt a lessening of fear and a sense of relief that ldquosomebody is
here to rescue merdquo This seemed another instance of the value that Natalie placed
on self reliance it was more acceptable for someone to come to her aid on their
own than for her to ask for help
Once instead her apartment Natalie thought if she rested for a while she
would feel better She estimated that she sat and rested for a few hours It seemed
to her that her right arm and leg became even weaker as she sat and her vision
may have been a bit blurry During this time Natalie was occupied with trying to
figure out what could be going on and she considered several different ideas The
first idea that came to mind was a heart attack but she soon concluded this was
not the case ldquoI was thinking like heart attack I knew about the chest pain and it
also gives you like a little numbness I had the numbness but I didnrsquot have the chest
pain [or] shortness of breathrdquo She next wondered if she was going into a coma Her
idea about a coma was that ldquopeoplehellipjust lay down and they just sleeprdquo Natalie
rejected this idea as well ldquoI knew I wasnrsquot trying to go into a coma lsquocause I wasnrsquot
179
sleepy I wasnrsquot dizzy‐headed you know drowsy I wasnrsquot any of thatrdquo She also
considered more mundane explanations for her arm and leg weakness such as a
work‐related injury caused by lifting something heavy or bumping her knee but
rejected both scenarios because she could not recall any such instances
Nataliersquos ideas about the symptoms of a heart attack came from a book she
read at church that was used by a group of women in the nursing ministry who
responded to the needs of congregants who fall ill or were injured during church
services The book included information about stroke but Natalie said what she
had read in the book did not seem to match her own experience of stroke onset ldquoIt
was nothing like mine was It was just totally differentrdquo she said Nataliersquos only
real‐life previous personal experience with stroke was a friend whose stroke ldquohad
[her]hellipflat on her backrdquo Natalie viewed her stroke onset as different from that of
her friend in that her friend could not function whereas Natalie was able to albeit
with difficulty The memory of her friendrsquos dramatic stroke onset caused Natalie to
reflect that ldquoeverybodyrsquos body sends out different chemistryrdquo
The phone rang several times while Natalie was resting and thinking about
her symptoms but she decided not to answer it ldquoI didnrsquot even feel like talking to
nobody else lsquocause I was trying to figure out what was going on with my bodyrdquo she
said Eventually Natalie decided she needed help ldquoSomething kept telling me You
need to call somebody You need to call somebodyrdquo She characterized this as ldquoher
last chance to get helprdquo which suggested that Natalie now viewed her symptoms as
180
serious ldquoI didnrsquot have no strengthhellipthere was no improvementhellipand things were
worserdquo she recalled Her symptoms now seemed closer to one of her ideas about
sick ldquoCause it wasnrsquot nothing that normally would come and go away It wouldnrsquot
go away It would kind of ease up but when it would come back it would come
back strongrdquo
She called her son who was the only one of her three adult children who
lived in town At first he said that he would meet her at the hospital but when she
told him she couldnrsquot drive he said he would be right over Although Nataliersquos son
told her to stay where she was she thought it would be easier for him if she was
outside when he arrived because he wouldnrsquot have to go to the trouble of coming
inside and locking the door ldquoI said to myself if I can just make it outside then he
wonrsquot have to come in and get me and lock the door and like thatrdquo
Walking from her bedroom to her front door took an enormous effort and
when she got there Natalie felt as though she had ldquopulled a trainrdquo Her son arrived
soon thereafter and brought her to the hospital When he helped Natalie out of his
truck outside the emergency department she was unable to bear any weight on
her right side and sank toward the ground A hospital security guard saw this and
got a w ickrdquo heel chair When he asked her what was wrong Natalie replied ldquoIrsquom s
Natalie didnrsquot realize that her speech was slurred until a nurse in the
emergency department pointed this out to her This nurse told Natalie that she
probably having a stroke ldquoNo I donrsquot think sohellipI ainrsquot had no strokerdquo was Nataliersquos
181
quick reply to this information After the results of her brain scan came back a
physician at the hospital told Natalie she had had two strokes one sometime over
the previous weekend and one during her sleep the night before Natalie
speculated that the first stroke happened on Saturday which was the day she lost
her balance and the co‐worker noticed her lips moving
When told that she had a stroke Natalie said ldquoI just criedrdquo She cried
because by that time she had lost so much functional ability but also because the
diagnosis itself was so unexpected In fact she asked the doctor to rerun the tests
to make sure that she had indeed had a stroke Several times during the interviews
Natalie indicated that she had not felt at risk for a stroke She emphasized that no
family member had ever had a stroke and thus at the time of her own stroke
ldquostroke was the least thingrdquo on her mind Natalie seemed to place great importance
on family history as a primary risk factor for stroke although she later mentioned
that smoking could have contributed to her stroke When she was diagnosed with
diabetes ten months before her stroke she had been told to quit smoking but said
had been unable to do so
After being assured that the diagnosis was correct Natalie ldquogot madrdquo
because she had ldquoall those signsrdquo but thought she would get better if she rested
Lord is gonna put signals out there Hersquos gonna give you signs And then if you ignore those signs then Hersquos gonna do something to get your attention And He was sending me these signs but I was like putting them on the back urner He said well okay shersquos not getting it So Irsquom gonna set something n her lap this time
182
bi
Natalie repeatedly said that she had not ldquoput the pieces of the puzzle
togetherrdquo when she had tried to figure out what was going on with her body during
the six days before she went to the emergency department I got the feeling Natalie
felt bad that she had not figured out earlier that she had a serious medical
problem She said ldquoYou donrsquot have to be smart you just got to have common sense
and I even didnrsquot have thatrdquo When she thought about all the time she had spent
trying to figure out what was going on with her body Natalie concluded that the
problem had been that she was ldquoasking why but not whatrdquo In other words she was
asking why she was so tired and why her head hurt but not what type of condition
could be associated those symptoms However it seemed to me that Natalie had
been asking ldquowhatrdquo when she developed ndash and then discarded ndash several possible
explanations for her symptoms such as high blood pressure heart attack or a
coma The problem lay in the fact that she didnrsquot have a condition in mind that ldquofitrdquo
her symptoms
Toward the end of the second interview Natalie constructed another
explanation for why she had not realized sooner that her symptoms were serious
problem and required medical treatment She recalled that she had made some
mistakes at work over the weekend mainly mixing up the orders on patient trays
When this had been pointed out to her by a co‐worker on Monday Natalie hadnrsquot
thought much about it although she did wonder at the time if she needed new
glasses ldquoI just figured it wasnrsquot a good day you knowrdquo Natalie now thought her
183
ability to think may have been affected by the stroke as early as the weekend ldquoI
just had a hard time keeping my mind focused on what I need to dordquo she said If
her mind had been affected as early as the weekend this could explain why she had
not ldquoput the pieces togetherrdquo earlier
I was the first person to whom Natalie told the story of her stroke in detail
because she said ldquoWho would want to hear a sad storyrdquo During our second
interview she added that she had been reluctant to tell the whole story to her
acquaintances for fear of peoplersquos reaction ldquoFirst thing they say lsquoYou must have
missed somethingrsquordquo Her concern about what others might think reflected her own
feelings about not figuring out earlier that something serious was occurring
By sitting down and telling her story Natalie said she was able to get ldquoa
clearer picturerdquo of what actually occurred which helped her understand what
happened to her Consistent with Nataliersquos generous nature she thought that by
telling her story she might help other people Of the many life changes after her
stroke one of the most difficult has been that Natalie no longer can help other
people and she saw participating in the study as a way to do so ldquoWhat happened
to me is going to happen to some one else but they symptoms may not be like
mine And maybe when they go to the doctor after the research come outhellipthat will
give them [doctors] a better idea of this [stroke] may be a possibility hererdquo
184
Jane ldquoLike whirlwinds going around and around and around and aroundrdquo
Jane and her husband Thomas who are in their seventies have owned and
managed a bed and breakfast inn for 13 years They seem very close and spend
most of their time together It was clear that Thomas worries about Janersquos health
and he said since her stroke he doesnrsquot feel comfortable when they are apart for
long
This was Janersquos second stroke She has some aphasia from her first stroke
three years ago which caused her to hesitate and search for words while she told
the story of her second stroke She joked that between she and Thomas they can
tell a whole story but since he was not present during the interview she said I
would have to supply her with words However by giving Jane plenty of time to
express herself it turned out that I had to do this on only a few occasions
Jane sometimes has days when she does not feel well which she attributed
to her previous stroke On bad days she said ldquoI just feel horrible I feel tired and
fatigued I just canrsquot really I canrsquot function very wellrdquo She sometimes has
headaches on these days She usually knows as soon as she gets up if it will be a
bad day Jane was having one of her bad days on the day of her second stroke She
has found from experience that if she goes ahead with her usual activities she
sometimes starts to feel better So Jane cooked breakfast for the BampB guests Even
185
on her bad days she has little problem doing this because it was such a routine
activity and this proved to be the case on the day of her stroke
After breakfast Jane realized that she felt ldquoway worserdquo than she usually does
on her bad days She had a ldquohuge bad feelinghellipjust a bad bad feelingrdquo Jane had
difficulty describing the quality of this feeling As she talked more about her ldquohuge
bad feelingrdquo on that day I thought of the word malaise the definition of which is
ldquoan indefinite feeling of debility or lack of health often indicative of or
accompanying the onset of an illnessrdquo (www httpwwwmerriam‐
webstercom) A bit later Jane said ldquoI felt kind of like I had the flurdquo
At the time Jane said she didnrsquot know that anything was wrong ldquoI didnrsquot
know that I was sickrdquo she said ldquoexcept that I just felt so badrdquo Because Jane
regularly had days in which she felt ldquobadrdquo she made a distinction between feeling
bad and having an illness that required a visit to the doctor This difference had to
do with the length of time her symptoms lasted ldquoWhen I have those bad days I can
feel just fine the next day And so I know that even though I felt really really lousy I
knew the next day would be a better dayrdquo She wasnrsquot sick if she felt better the next
day Therefore it never occurred to Jane to consult her doctor on the morning of
her stroke because she assumed that this was another of her bad days even
though the extent of her tiredness was ldquoextremerdquo She did recall wondering ldquoWhy
do I feel so badrdquo
186
Although Jane felt ldquoway worserdquo that morning than she usually did on her
bad days she continued on with her usual activities at the BampB ldquoWe are the only
ones here (at the BampB) and we both have to do our jobs although admittedly
Thomas does most of the work I had to clean up the dining room and the kitchen
and the washingrdquo At about 3 pm Jane went to the bathroom with the intent of
then going to Curvescopy to exercise As she reached for the bathroom doorknob she
suddenly felt dizzy and momentarily had to lean against the wall She described
this sensation as being off balance Jane reached out to turn off the light but found
she couldnrsquot find the light switch ldquoUsually you can just put your hand out and find
it Well I couldnrsquot find it [when] I put my hand up to the wall I I had to turn
myself to find the light switchrdquo
The reason Jane needed to turn her head and torso to find the light switch
was that the outer half of the visual field of her left eye had been replaced by a
ldquodark cloudrdquo that prevented her from seeing things to her left ldquoMy whole left
vision was clouded It was like blind spothellip a huge blind spotrdquo Jane saw movement
in this ldquodark cloudrdquo and made swirling motions with her hands that made me think
about smoke from a fire moving outward and upward in the wind It was she said
ldquolike whirlwinds going around and around and around and aroundrdquo
The first thing that went though Janersquos mind was to wonder if she might be
having a migraine For 45 years she had experienced episodes of vision
disturbance every month or two that her doctor diagnosed as atypical migraine
187
188
These episodes which often lasted 10 or 15 minutes started with ldquosparklersrdquo in
the corners of her eye ldquoIt would be just a spot and then it would it would enlarge
to a kind of an arch And I couldnrsquot see much from that eyerdquo These episodes usually
ere aw ccompanied by not feeling well although she never had any pain
Jane also didnrsquot feel well when the change in her vision began ldquoThen like
the other times I felt bad I felt like I needed to lie downrdquo In fact she now felt even
worse than she had all day Despite the combination of vision loss and not feeling
well Jane immediately dismissed migraine as a cause for her current symptoms
Key to this evaluation was the difference in the quality of the blind spot in her
vision There were no flashing lights this time and the blind spot was larger and
appeared different ldquoIt had never looked like this beforehellipit was just bigger and
darker and strange very strangehellip It had never been that badhellipI knew it was not
anything like what Irsquod had beforerdquo
ldquoI knew something was wrongrdquo Jane said ldquoI didnrsquot think about it being a
strokerdquo She hesitated after saying this and then added ldquoI guess I thought it but I was
in denialrdquo The thought that she might be having another stroke filled Jane with a
feeling of ldquodreadrdquo ldquoNot again Not again I donrsquot want to go though this againrdquo she
remembers thinking ldquoI was afraid of what was happening to me I was afraid it was
going to be another strokerdquo Her last stroke had left Jane with aphasia and Jane was
afraid of the consequences to her health and well being if this indeed was a stroke
This concern was related to memories of her grandmother who had a severe stoke
and was bedridden for many years ldquoShe couldnrsquot do she couldnrsquot get up She was
helpless and she had to be taken care ofrdquo Jane was afraid that a stroke might result
in a similar state of dependency
She immediately called her husband who was in another part of the BampB
When he arrived Jane was looking up stroke in a medical book Had she not had
previous stroke she said she doesnrsquot think she would have thought about a stroke
as a possible cause for her symptoms After she told Thomas about her symptoms
and what she was doing Thomas went into another room and he too looked up
stroke on‐line When he saw that vision problems were a sign of stroke he called
their primary care physicianrsquos office and was told by the doctor on call to go
immediately to the emergency room Thomas came back and told Jane they were
going to the emergency room ldquoright nowrdquo
Jane described her husband as an individual who acts decisively ldquoWhen he
sees a problem hersquos gonna fix it right nowrdquo They didnrsquot think of calling EMS because
189
Thomas thought he could get Jane to the hospital quicker than if they had to wait for
an ambulance to arrive The couple arrived at the emergency department about an
hour after she first felt dizzy in the bathroom
Jane described herself as ldquovery surprisedrdquo that she had a second stroke ldquoI
just never thought that I would have another onerdquo she said She recalled having a
similar feeling of surprise with her first stroke and said it had never occurred to her
that she would have a stroke She also had not thought of herself as at risk for a
second stroke She said it wasnrsquot until recently that she considered whether her
grandmotherrsquos stroke could have placed her at increased risk Even now after two
strokes Jane wondered if this family history and the fact that she has had two
strokes placed her at risk for yet another one ldquoI donrsquot know whether to feel that way
or not about another onerdquo
When in the past Jane had come across magazine articles about stroke she
had never thought of the list of stroke symptoms in terms of herself Until now that
list of symptoms didnrsquot seem to have any relevance for her life
Now and then I read in a magazine the signs of stroke And I you know I see those and I look at em and that was my only knowledge of what a stroke might be likehellipWhen I would read those lists I would never connect them with myself in any way I would think oh well thatrsquos interesting but never would I have connected myself with any of those signs until now and only ecause I had been though [stroke] before Otherwise I probably would still ave never thought about those lists of symptoms in connection with me bh
190
191
S ummary of the Within Case Analysis
Individual narrative accounts were created from the data collected during in‐
depth interviews with each participant Each account recreated a womanrsquos
experiences from the time she first noticed symptoms until she arrived at the
emergency room Consistent with Polkinghornersquos (1988) method of within case
narrative analysis the researcher attempted to ldquore‐storyrdquo each womanrsquos story in
such a way that the temporal order of events for the period of time under study was
set out and the context within which these events occurred illuminated The result
of this enterprise was a collection of stories each of which provided a narrative
explanation for why a particular woman arrived at the hospital emergency
department when she did
Chapter Five Across Case Analysis
This chapter of the dissertation consists of the across case analysis in
which the similarities and differences in the narrative accounts are discussed The
across case analysis was organized into three main sections corresponding with
the components of symptom experience as defined in this study perception of a
symptom evaluation of the meaning of a symptom and response to a symptom
This was done in order to provide a general organizational framework for
discussion Because the components of symptom experience are interrelated there
is overlap in the three sections regarding these aspects of womenrsquos experiences of
early stroke The findings from the across case analysis are summarized in Table 6
on Page 236
Symptom Perception
In this section of the across case analysis similarities and differences in the
manner in which participants experienced changes in their biopsychosocial
functioning sensations or cognitions during early stroke are discussed This
section provides the answer to the first research question ldquoHow do women
experience their bodies during early strokerdquo
Two main insights from the narrative accounts with regard to symptom
perception were identified The first insight was that the symptoms of ischemic
stroke were perceived by the women in this study as both familiar and strange It
was through the use of several narrative processes that participants described the
192
bodily changes of early stroke as familiar and an essential quality of the womenrsquos
descriptions of their body as strange was their perceptions of the body as separate
from the self
A second insight from the across case analysis regarding symptom
perception was that the participants experienced early stroke as the inability to
perform routine activities in their usual fashion There were three components of
the inability to function in usual fashion heightened awareness of their bodies
alterations in lived spatiality and a disturbance in the ability to interpret the world
that was manifest as a loss of body sense A difference in the narrative accounts
was that in some cases the inability to perform routine activities in usual ways was
associated with cognitive changes
Symptoms as both familiar and strange
Symptoms as familiar
ldquoNarration or storytelling comprises both matters told and the process of
telling both whats and howsrdquo (Gubrium amp Holstein 1977 p 148) An examination
of the narrative accounts revealed that my initial invitation to tell the story of
stroke at times did not yield rich descriptions of symptoms For the most part
these initial responses took the form of a sequential ordering of events and actions
that took place during early stroke the types of bodily changes that came to
participantsrsquo attention and what they and other people did in response to the
193
symptoms More in‐depth descriptions of symptoms often emerged in response to
follow‐up questions as the interviews unfolded
When telling their stories the participants initially seemed to have some
difficulty describing the essential quality of the changes in functioning sensations
and cognition they experienced between symptom onset and arrival at the
emergency department It sometimes seemed as though a participant had not been
able to describe symptoms to her own satisfaction In response to follow‐up
questions about what a particular bodily sensation had been like the women often
relied on simile A simile is a figure of speech in which one thing is compared with
another (httpdictionaryoedcom) Using simile enabled the participants to
communicate what their body felt and acted like at stroke onset The participantsrsquo
choice of simile often linked their symptoms to sensations or experiences with
which participants had some degree of familiarity
Maria in particular made frequent use of simile when telling her story She
described her arm as feeling as though ldquolittle fire antsrdquo were crawling on it and she
likened her itchiness to wearing ldquonew clothes that hadnrsquot been washedrdquo She also
evoked the weight of concrete to compare the sensation of heaviness in her leg By
comparing the sensation when she scratched her skin to ldquorazor bladesrdquo Maria
conveyed both the extent to which normal sensation was altered during early
stroke as well as the quality of this change in sensation
194
The use of simile when describing symptoms was an example of
typification or the practice of characterizing an experience as of some known type
(Schutz 1970) According to Schutz (1970) typification depends upon our ldquostock of
knowledge at handrdquo (p 116) about the usual or typical way that the known type is
experienced In the present investigation womenrsquos ldquostock of knowledgerdquo about
experiences of bodily sensations figured into their evaluation of symptoms
According to Gubrium and Holstein (1977) the effectiveness of typification
in storytelling depends upon a shared understanding of things or events between
the narrator and listener Thus typification served as a kind of shorthand that
enabled the participants to describe concepts and experiences without having to
go into great detail The use of simile enabled me to readily apprehend the
essential quality of symptoms by drawing on for example my own experiences of
bugs crawling on my skin and scratchy clothing Kenziersquos statement that she
walked down the hall ldquolike a drunken sailorrdquo brought to mind the image of
someone unsteady on their feet and unable to walk a straight line after drinking
too much alcohol The accuracy of this image was confirmed by Kenziersquos further
description of this event
The description of stroke symptoms using familiar concepts and
experiences by the women in this study also was seen in the Faircloth et al (2005)
study of men with stroke In addition to aiding communication and understanding
between themselves and the researcher describing symptoms in terms of familiar
195
sensations and experiences was a way for persons with stroke to interpret and
give meaning to their experience of symptoms (Gubrium amp Holstein 1977) By
constructing symptoms in terms of the typical and familiar the women in the
present study placed these experiences within the context of their lives
In contrast to the effectiveness of simile in conveying the sense of what
symptoms were like a shared understanding of the meaning of symptom labels
(eg a descriptive or identifying word used to describe a symptom) was initially
elusive As noted by Pennebaker (1982) symptom labels are highly individual and
in the present study different meanings were associated with the same symptom
label I often asked several follow‐up questions in order to clarify what a
participant meant when she labeled a symptom with a particular word This was
most apparent with the label ldquodizzyrdquo For Tiffany dizzy meant ldquowobblyrdquo as though
she was ldquogoing to fall overrdquo Jane similarly described dizzy as a sense of being off
balance In contrast dizzy for Kenzie and Teresa included a sensation of
movement although the quality of movement differed for these women Kenziersquos
description of ldquodizzyrdquo came closest to the medical definition of vertigo in which
ldquothe individuals surroundings seem to whirlrdquo
(httpwwwnlmnihgovmedlineplusmplusdictionaryhtml)
The strange body
There were times as they told their stories when the women seemed to
have no words to describe how their bodies felt and acted during early stroke
196
Maria several times demonstrated what her attempts to walk during early stroke
had been like when she could not adequately convey what this experience was like
in words Lisa seemed to speak for other women in the sample when she said it
was ldquoso difficult to explainrdquo how her body felt and acted during early stroke
As a consequence of their difficulties describing the essential quality of
symptoms participants often resorted to using the words ldquostrangerdquo ldquoweirdrdquo and
ldquooddrdquo with reference to their bodily experiences during early stroke This choice of
words was instructive of how the body was perceived as acting in ways that were
out of the ordinary An essential aspect of perceptions of bodily strangeness was
that the body was perceived as in some way separate from the self Bodily
strangeness was manifest in participantsrsquo descriptions of their bodies as no longer
responsive to their will Natalie exemplified this phenomenon when she described
how her mind wanted to do one thing but her body would not allow her to do so
Maria expressed great frustration at her leg when it would not cooperate with her
intention that it move in a certain way Instances such as these were emblematic of
the bodyrsquos betrayal in illness (Kleinman 1988) Kenzie gave voice to her bodyrsquos
betrayal when she described the attitude of her left arm in response to her
comma nds ldquoIt was kind of laying there like lsquoIrsquom not doing nothingrsquordquo
The participantrsquos use of the third person when describing their
malfunctioning bodies was an example of the distance they felt between their body
and self during early stroke It was common for the women to refer to their leg or
197
arm as ldquoitrdquo instead of ldquomy armrdquo or ldquomy legrdquo Ellenrsquos description of her arm as ldquodeadrdquo
was further evidence of the perception of the body as something other than the
self as was Lisarsquos description that her arm felt like it wasnrsquot there Researchers
examining post stroke experiences similarly found that the body was perceived as
passive or separate from the self (Doolittle 1991 Ellis‐Hill Payne amp Ward 2000
Faircloth et al 2005)
Some participants articulated a paradoxical sense of the body as both
absent and present during early stroke For example Kenzie contrasted the
unaffected side of her body that ldquoworked withouthellip knowledge that I was thinkingrdquo
with the affected side which she could not get to ldquorespond to conscious thought
processesrdquo Teresa saw her mind during early stroke as having a ldquogoodrdquo and a
ldquobadrdquo part in which the bad part was unresponsive to the ldquogoodrdquo part of her mind
that previously accomplished activities without conscious awareness In these
instances the unaffected parts of the body remained ldquounconsciousrdquo to the self
whereas the parts of the body affected by the stroke made themselves known The
sense of the body as both present and absent during early stroke made explicit by
Kenzie and Teresa was implicit in other accounts in participantsrsquo recognition that
their body was not acting in the way they (in their minds) wanted
Central to phenomenological thought is the idea that body and
consciousness are one (Husserl 1964) However Williams (1996 p 27) posited
that the appearance of symptoms ldquoresurrectsrdquo the idea of Cartesian dualism at the
198
phenomenological or experiential level The womenrsquos descriptions of their bodies
as in some way separate from themselves demonstrated how their bodies became
a physical material entity at stroke onset (Toombs 1993) Although they
distanced themselves from their malfunctioning bodies the participants could not
completely dissociate themselves from it because as discussed in the next section
the objectified body became a hindrance and oppositional force during
interactions with the world (Toombs 1993 p 72)
The Inability lsquoTo Dorsquo
An essential insight of the across case analysis was that early stroke was
experienced as the inability to carry out projects in the world in accustomed ways
The stories of the participants in this study were filled with the many difficulties
they encountered as they tried to rise from a couch grasp an object dress walk
talk drive get up from the floor and prepare food Indeed stroke symptoms were
described as synonymous with these difficulties
Husserl (1989 p 271) wrote of the subjective aspect of the body (the ldquoI
moverdquo) in which we apprehend our body ldquoas something practically possiblehelliprdquo
Natalie depicted the ldquoI moverdquo of her existence when she used her fingers to mime
how prior to stroke onset she walked quickly and purposefully to the kitchen to
get a glass of water She contrasted this effortless communion between her
intention and her actions in response to that intention with her struggle on the day
she was admitted to the hospital ldquoto get from Point A to Point Brdquo Kenziersquos phrase
199
ldquofurniture walkrdquo was an illustration of how she Ellen and Natalie had to rely on
objects in their environment to carry out their intention of moving from one place
to another when they no longer could do so effortlessly
The difficulties in functioning conveyed by participants indicated that early
stroke was not experienced as lsquoin herersquo or inside the body For the women in this
study early stroke was lsquolived outrsquo through their inability to carry on with their
activities as they had in the past Early stroke was the inability to walk straight or
grasp an object or see the light switch The disruption in the ability of function in
usual ways that characterized early stroke was different from womenrsquos
experiences of breast cancer in which ldquoan uninvited guestrdquo had invaded the body
and which often was unknown until a medical practitioner disclosed its presence
(Lindwall amp Bergbom 2009) In contrast to the experience of illness as a hidden
presence in the body stroke was experienced by the women in this study as
immediately present as they tried to carry out their projects in the world The
inability to carry out routine activities in usual ways was accompanied by a
heightened awareness of the body alteration in lived spatiality and losing body
sense as discussed below
Heightened awareness of body
A heightened awareness of body functioning accompanied the womenrsquos
efforts to enact their intentions In contrast to Sartrersquos (1956) description of the
body as lived but not known as we carry out our activities early stroke meant that
200
activities previously performed without conscious thought now required close
attention and strategizing A consequence of stroke onset was that the women
were very aware in general of the functioning of their bodies and specifically of the
contrast between normal functioning and the ways that their bodies were
malfunctioning
There were many examples in the narrative accounts of participantsrsquo
awareness that there bodies were malfunctioning and of their adaptations to these
alterations in body functioning Jane was aware at stroke onset that she had to turn
her entire upper body in order to see the light switch When Kenzie had to ldquothink
throughrdquo how to get up from the floor after she fell this process involved an
awareness of the usual role of her arm in accomplishing this activity Ellen
eventually was able to get up from the couch by sliding to the floor and then using
her hands to work her way up to a standing position Her statement that this
process was ldquonot the way I wanted tordquo could be interpreted as ldquonot the way I
usually didrdquo (eg without paying close attention to the working of her body)
These findings were in accord with results from studies of post stroke
experiences in which previously routine activities now demanded unusual
concentration (Faithcloth et al 2004 Kvigne amp Kirkevold 2003) Both during and
after stroke bodily changes resulted in a disruption of an individualrsquos relationship
with the word resulting in adaptive responses that were characterized by close
attention to the workings of the body
201
Alteration in lived spatiality
One consequence of participantsrsquo inability to carry out routine activities in
accustomed ways was an alteration in what Toombs (1993) called ldquolived
spatialityrdquo All the women in this study experienced alterations in their perceptions
of functional space or the physical environment in which we carry out our
activities As noted by Toombs (1993) illness can render the surrounding
environment inhospitable or even hostile For example out of fear that they would
fall and harm themselves Lisarsquos mother and Tiffanyrsquos co‐workers ensured that
these women remain seated until an ambulance arrived These two women as well
as Louise experienced a restriction of lived space such that their worlds literally
shrunk to the size of a chair or a small area on the floor
Another consequence of stroke symptoms was that distances previously
perceived as inconsequential now were now perceived as problematic (Toombs
1993) Kenzie noted that the hallway in her school seemed unusually long and
thus daunting to traverse and Teresa observed that although she had only three
steps to climb to gain access to her house it seemed like many more Louisersquos
concern that she was going to fall which led to her decision to stop walking and lie
down the floor was reflective of her perception that the open space of her
bedroom was threatening and the distance between her location and the bed too
great to overcome
202
Space normally is perceived in relation to the ldquoI canrdquo of existence (Leder
1990) The objects of our intentions (the bed the end of the hall an article of
clothing on the other side of the room) render the surrounding environment the
sphere of the bodyrsquos action (Merleau‐Ponty 1962) During early stroke
perceptions of space were altered for the women in this study such that the
surrounding environment no longer presented the possibility of accomplishing
intentions in usual ways
Losing bodyshysense
During illness a disruption in the bodyrsquos ldquoprimitive spatialityrdquo may occur
such that ldquothe body no longer correctly interprets itself or the world around itrdquo
(Toombs 1993 p63‐64) An examination of the narrative accounts revealed that
the participants experienced a disruption in the internal intuitive sense that
Merleu‐Ponty (1962 p119) referred to as our ldquoinner communication with the
worldrdquo The loss of body‐sense meant that the exchange of information that
normally flows between the body and the world without our conscious awareness
was altered during early stroke
Ellen found herself grasping at air or missing the table when she intended
to pick up or set down objects Her observation that things ldquowere where they were
supposed to be but in my mind they were differentrdquo was illustrative of the
breakdown of the internal navigation system that under normal circumstances
would have enabled her to instinctively perform these actions Lisa could not
203
discern that she had ldquoa death griprdquo on the toilet paper because her body had lost its
ability to interpret itself Participants also lost the ability to effortlessly navigate
through space by unconsciously avoiding obstacles Kenzie described herself as
ldquodisorientedrdquo when she tried to find her way to the bathroom and Lisa Kenzie
Ellen and Teresa bumped into objects and the walls as they walked
Characteristic of the experiences of a disruption in ldquoprimitive spatialityrdquo for
some though not all of the women was an initial unawareness of altered bodily
function Lisa and Teresa initially felt as thought they were walking in their usual
manner Lisa only realized that something was amiss when an unexpected view of
the room came into view and Teresa discovered something was wrong with her
gait when she walked into the wall in her hallway In contrast to these experiences
of a mismatch between perception and actual functioning the other women in the
study immediately perceived that something was wrong when they initiated an
action
In his essay The Disembodied Lady Sacks (1990 p 43) described a woman
who lost her sense of proprioception which he defined as the ldquocontinuous but
unconscious sensory flowrdquo of information from our bodies that enables us to know
the location of a part of our body in relation to other parts of our body or in
relation to objects in the environment In the present study Lisarsquo experience was
similar to Sacksrsquos protagonist both of whom discovered that it was only through
their sense of vision that they could ascertain the location of their limbs In the
204
ambulance Lisa did not know that her arm was hanging over the edge of the
gurney until she happened to glance down and see it thus For Lisa her arm quite
literally was not there I was reminded of Lisarsquos description of losing her arm when
during an interview Louise suddenly announced ldquoI canrsquot find my armrdquo It was only
when her daughter showed Louise that her arm was laying on a pillow positioned
next to left hip and across her lap that Louise knew its location
Changes in cognitive functioning
Stroke as the inability lsquoto dorsquo was experienced by most women in this study
as a problem with the physical body One of the main differences in the narrative
accounts was that three of the nine participants reported experiencing some sort
of alteration in thinking or perceiving Tiffanyrsquos experienced alterations in her
perception of the passage of time such she that was confused about the time of day
and she tried to reconcile this perception with her observations about activities in
her environment Lisarsquos inability to form thoughts and express herself through
speaking was a dramatic example of a change in cognitive functioning during early
stroke
Natalie experienced an alteration in her cognitive functioning when her
surrounding suddenly seemed unfamiliar on the day she was admitted to the
hospital As with Lisa changes in cognitive functioning made it difficult for Natalie
to carry on with her activities and she had to adapt her usual way of driving to
compensate for her confusion As she developed her story Natalie also wondered
205
if problems at work four days prior to her admission to the hospital may have been
associated with her stroke She recalled that routine activities involving motor
skills such as cleaning were not problematic but tasks that required greater
cognitive abilities such as coordinating patientsrsquo diets gave her unaccustomed
trouble At the time these problems occurred Natalie hadnrsquot thought much about
these mistakes and it was only when she told her story that she realized how these
episodes may have figured into the overall story of her stroke
Symptom Evaluation
Similarities and differences in participants opinions about the cause
seriousness and course of symptoms are discussed in this section of the across
case analysis Together with the following section on symptom response this
section provides the answer to the second research question ldquoWhat are womenrsquos
thoughts feelings behaviors and interpersonal interactions from the time of
symptom onset until arrival at the emergency department
This section is divided into five subsections In the first two subsections
womenrsquos evaluations about the cause and seriousness of symptoms are discussed
This is followed by a discussion of how the women who experienced symptoms
prior to 24 hours of hospital arrival tried to make sense of prodromal symptoms
The final two subsections address how perceptions of stroke risk and ideas about
what sick means contributed to symptom evaluation
The search for the cause of symptoms
206
An area of similarity across the narrative accounts was that the awareness
of a change in bodily sensations or functioning prompted a search for the cause of
the symptoms At some point during early stroke each participant came up with at
least one cause for her symptoms For the sample as a whole these causes included
stroke heart attack high blood pressure diabetes coma fainting medication side
effects fractured ankle virus vertigo carpel tunnel syndrome poor circulation
and food poisoning In addition symptoms were attributed to everyday bodily
occurrences such as tiredness staying up too late limb falling asleep dozing off
and muscle strain The search for a cause for symptoms involved (1) memories of
past instances of illness (2) preexisting ideas about health conditions and (3)
familiarly with everyday bodily sensations
An area of difference in the accounts with regard to the cause of symptoms
was that two participants attributed their symptoms to stroke whereas the other
women in the study did not consider stroke as a possible cause for their
symptoms This was consistent with previous reports that a majority of persons
diagnosed with a stroke had not considered stroke as a possible cause of their
symptoms (Bohannon et al 2003 Williams et al 1997 Williams et al 2000)
Another area of difference was that two participants attributed prodromal
symptoms to a cause but did not do so for acute symptoms A possible explanation
for this latter difference concerns the emotional response to symptoms of these
two women which is discussed in the next section of this chapter
207
Memories of illness
When searching for a cause for symptoms the participants drew upon
memories of past instances of illness injury or bodily change This was the case for
the women who attributed their symptoms to stroke and as well as those who did
not In the case of the two women who attributed their symptoms to stroke past
memories of illness were central to their evaluation that a stroke was in progress
Janersquos conclusion that her symptoms were due to a stroke was based on her
history of atypical migraine and as well as her previous stroke She compared her
vision changes at stroke onset with what had previously occurred during migraine
and differences in the quality of the vision changes in these two instances were
central to her evaluation that migraine was not the cause of her present symptom
Janersquos previous stroke heightened her awareness that these symptoms could
indicate that she was having another one Maria associated her inability to stand
upright during early stroke with the memory of her mother leaning to one side in
bed at the time of her second stroke from which memory Maria deduced that her
own symptoms were due to a stroke
The women who did not attribute their symptoms to a stroke also called
upon memories of past instances of illness or injury when coming up with a cause
for their symptoms For example although Tiffany had never fainted she described
herself as about to ldquopass outrdquo based on previous observations of other people who
felt faint Kenzie recalled her friendrsquos description of a spontaneous ankle fracture
208
when coming up with an explanation for why she had fallen on the day she was
admitted to the hospital Natalie wondered based on previous instances of either
high or low blood sugar if a similar fluctuation in blood sugar levels could be
causing her present symptoms
Preexisting ideas about health conditions
In addition to memories of past experiences with illness and injury
participantsrsquo ideas about stroke and other health conditions contributed to their
evaluation of their symptoms These ideas were formed though interactions within
the social world (Schutz 1970) Nataliersquos belief about the association of
hypertension eating pork and headache came about through social interactions
within the African American community Kenzie had general ideas about a
condition called vertigo which she had heard about from other people Mariarsquos
knowledge of a test for arm weakness which she employed during early stroke to
assess her symptoms was learned from a health provider at the time of her
motherrsquos stroke
The media was a source of knowledge about stroke and other health
conditions for some women Nataliersquos understanding of the symptoms of heart
attack and stroke were derived from a book used to train church members to assist
people who became ill during services Teresa and Jane learned about stroke
symptoms from respectively newspapers and magazines In two cases knowledge
about stroke symptoms was more consistent with the symptoms of heart attack
209
Teresa and Kenzie mentioned pain andor trouble breathing as potential stroke
symptoms That these women confused AMI warning signs with those of stroke
were consistent with a CDC (2008) survey in which 40 of respondents identified
chest pain or discomfort as a symptom of stroke
Several participants described their experiences during stroke onset as at
odds with previous ideas about the onset of a stroke Kenzie and Natalie developed
these ideas into narrative explanations for why their evaluation of symptoms did
include stroke as a possible cause Kenzie had never heard that dizziness could be
a symptom of a stroke Based on her experiences with her father she thought that
a high blood pressure reading would be the primary warning sign that a stroke
was imminent rather than a particular physical symptom
Preexisting ideas about the trajectory of stroke figured into Kenziersquos and
Nataliersquos explanations for why they had not considered stroke as a possible cause
for their symptoms Their experience of symptoms evolving over time was
contrary to their concept of stroke onset Kenzie thought that stroke happened
suddenly and dramatically ldquoboomrdquo Nataliersquos similarly believed that stroke
rendered affected individuals suddenly incapacitated such that it would be
impossible for someone to continue functioning an idea that was based on her
recollections of a friendrsquos stroke These beliefs were similar to the etymological
meaning of the word stroke as something that leaves its victims incapacitated
(Camarata Heros amp Latchaw 1994)
210
The fact that Natalie and Kenzie were able for at least part of the time and
albeit with difficulty to carry on with their activities contributed to their
explanation of why they did not think of stroke in association with their symptoms
Natalie commented several times that stroke onset was not the same for everyone
and how this variability contributed to her missing the possibility that stroke could
be causing her symptoms Kenzie and Natalie concluded that the combination of
their particular symptoms and the fact that the stroke did not immediately strike
them down contributed to their lack of recognition that stroke was in progress
Nataliersquos remark that she ldquocouldnrsquot put the pieces of the puzzle togetherrdquo was
reminiscent of a participant in Eavesrsquo (2000) qualitative study who said he couldnrsquot
read th e signs that his symptoms were indicative of a serious medical problem
Researchers have described various ways that women evaluate bodily
sensations and make health care decisions (Harrison amp Becker 2007) The value
Kenzie placed on objective criteria (eg blood pressure reading) to indicate an
impending stroke and the fact that she did not question her physicianrsquos diagnosis
of a virus as the week progressed and she developed new symptoms was
suggestive of her trust in medicalscientific knowledge Maria in contrast talked
about how important it was to listen to her body when making health decisions
and said it was her normal practice to do so Had her first stroke symptom not
been so fleeting Maria believed she would have responded to its appearance by
going immediately to the hospital
211
Familiar bodily sensations
In addition to specific health conditions participants attributed symptoms
to everyday physical occurrences such as tiredness staying up too late limb falling
asleep dozing off and muscle strain In doing so the women relied of previous
instances of these types of bodily sensations (Schutz 1970) Once categorized as
an everyday physical phenomenon the symptoms were assumed to be benign and
were expected to spontaneously resolve as had similar sensations in the past
Examples of this type of evaluation were Louisersquos assumption that the tingling in
her hand and arm were instances of a body part falling asleep and Lisarsquos
assumption that her blurry vision and numb right hand at 2 am was due to
staying up so late and working the computer mouse Attributing symptoms to
every day causes normalized the symptoms placing them into the context of the
womenrsquos every day lives and experiences (Clark 2001)
The across case analysis revealed that these two types of symptom
evaluations ‐ attributing symptoms to specific health conditions and to every day
physical occurrences ‐ were not mutually exclusive during early stroke During the
course of early stroke a participant sometimes developed both types of symptom
evaluations This was especially the case although not exclusively so for the
women whose early symptom period was several hours or days in length For
example Natalie thought at first that her symptoms were due to tiredness but later
considered heart attack as a possible cause There also were times when a
212
participant discarded an idea about the cause of their symptoms and subsequently
developed another idea This occurred when Kenzie first adopted her husbandrsquos
explanation that her symptoms were due to food poisoning and later consistent
with her physicianrsquos explanation attributed her symptoms to a virus
Perception of symptom seriousness
There were differences in the narrative accounts with regard to whether or
not participants initially evaluated their symptoms as serious Serious in this
analysis was taken to mean ldquohaving important or dangerous possible
consequencesrdquo (www httpwwwmerriam‐webstercom) By virtue of
recognizing that their symptoms might indicate a stroke Janersquos and Mariarsquos
evaluation of their symptoms met this definition of serious
For the other women the extent to which symptoms hampered
participantsrsquo ability to carry out their activities contributed to an evaluation of
symptom severity It was generally the case that bodily sensations that did not
substantially interfere with functioning were not considered serious whereas
those that did so prompted an evaluation of seriousness For example being
unable to get up from the couch was perceived by Ellen as a serious symptom but
dizziness and arm numbness were not because she was able to continue
performing her activities with the latter symptoms On the night of her stroke
Louise reasoned that whatever was causing her hand and arm to tingle was not
serious because she still could use them
213
It was also the case that symptoms attributed to everyday bodily
occurrences were not considered serious Louise assumed that the tingling in her
arm and hand was an everyday bodily sensation and hence not serious Lisa made
a similar assumption regarding her initial symptoms of blurry vision and hand
numbness which she attributed to staying up late and the need for sleep
Kenziersquos account provided an exception to the proposition of a relationship
between the ability to carry out routine activities and perception of symptom
seriousness Vertigo greatly impeded her ability to carry on with her activities as
did the feeling of all‐over weakness she later developed Kenzie was the only
participant who sought medical consultation for prodromal symptoms but the
diagnosis was not one she considered serious (a virus) even though the symptom
(vertigo) substantially affected her ability to function Hence Kenzie did not think
of her symptoms as serious
Maria made the distinction about the seriousness of certain stroke
symptoms not with regard to her general ability to function but with regard to the
type of problem functioning Although her motor weakness numbness itchiness
and headache had important consequences because these bodily changes indicated
a stroke she considered these symptoms as less serious than cognitive changes
The meaning of cognitive changes to Maria was that these particular symptoms
were potentially dangerous and would indicate the need to seek immediate
medical assistance As long as she could think straight Maria believed it was safe
214
to take the time to drive an hour to her hometown hospital The idea that cognitive
changes were indicative of a more serious stroke was derived from memories of
her mother and sister at the time of their strokes both of whom had alterations in
their ability to think and respond to others
As with symptom attributions perceptions of symptom seriousness
sometimes changed over the course of early stroke Some participants in this
study evaluated their symptoms as serious immediately upon becoming aware of
their presence whereas other womenrsquos opinions about the seriousness of their
symptoms changed over time as new symptoms developed or existing ones
worsened For example Teresa immediately evaluated her dizziness as serious
because it interfered with her ability to walk Arm and hand tingling did not seem
serious to Louise but a short time later when she became weak she thought
ldquosomething was wrongrdquo because this new symptom made her feel as though she
might fall Another example of a change in perception of symptom severity over
time was Nataliersquos evaluation that her initial symptoms (headache and tiredness)
were not serious but later cognitive changes and arm and leg weakness were
considered serious because of the extent to which they interfered with her ability
to function Lisa evaluated her first symptoms as due to an everyday bodily
occurrence However eight hours later her sense of not being ldquorightrdquo was indeed
interpreted by her as serious
215
Making sense of prodromal symptoms
A major area of difference in the narrative accounts was the presence or
absence of prodromal symptoms Two‐thirds (n=6) of the sample reported
noticing symptoms prior to 24 hours of hospital admission To place these findings
within the context of existing research Stuart‐Shor et al (2009) found that about
one‐third of 389 men and women with ischemic stroke reported at least one
prodromal symptom A search for an understanding of how these symptoms fit
into the overall story of their stroke was an important aspect of the stories of the
women with prodromal symptoms
As they told their stories the participants who reported prodromal
symptoms constructed explanations for why they did not realize these symptoms
indicated a stroke or other serious health condition or why they had not sought
medical help Louise explained that her prodromal symptoms seemed ordinary
and familiar (eg the tingling sensation of an arm falling asleep) and because
similar instances in the past had resolved she assumed that these sensation would
do the same This was the reason that when these same types of bodily sensations
appeared on the day she was admitted to the hospital she did not attribute them to
a medical problem
As previously discussed Kenziersquos and Nataliersquos narrative explanations
included the discrepancy between their previous ideas about stroke onset stroke
symptoms stroke severity and their actual experiences An additional aspect of
216
their search for the meaning of prodromal symptoms consisted of attempts to
reconcile memories of their symptoms with the actual time of stroke onset As
Kenzie tried to sort out what her vertigo meant she wondered if she had two
strokes one that corresponded with the onset of vertigo and another stroke either
five or seven days later when she developed additional symptoms Natalie was told
by a physician that she had two strokes one of which probably occurred sometime
during the weekend prior to the Thursday when she was admitted to the hospital
When telling her story Natalie looked back at her activities as work over the
weekend in an attempt to pinpoint the day and time her stroke began
In retrospect Kenzie and Natalie saw prodromal symptoms as warning
signs Their concept of warning signs contained the idea that the body (Kenzie) or
God (Natalie) had sent signs to tell them that something was wrong and when
these symptoms were not responded to in the appropriate way a more serious
symptom occurred that could not be misinterpreted These were some of the
instances in the data that exemplified the role of narrative in constructing the
meaning of life events
Tiffany associated the head pain she experienced while coughing when
smoking marijuana with her stroke and she also saw this pain as a warning sign
Constructing the relationship between this symptom and her stroke served two
purposes for Tiffany First she developed a physiological explanation for the
relationship between the head pain and her stroke such that the pain while
217
coughing may have ldquopush[ed]rdquo the blood clot though her circulation to her brain
Second Tiffany hoped that by telling me that she had smoked marijuana other
women would become aware that smoking marijuana is not good for them In
other words if another woman had a blood clot in a vessel then smoking
marijuana could indirectly lead to a stroke if it caused coughing Tiffany seemed to
derive a larger meaning from her stroke with this explanation such that her
participation in the study could potentially help another person
Perceptions of stroke risk
A difference on the narrative accounts concerned the role of perception of
stroke risk in symptoms evaluation With the exception of Lisa all the women in
this study reported at least one health condition or other factor that is associated
in the literature with an increased risk for stroke However Maria was the only
participant who perceived herself at risk and she was one of only two women in
the study who attributed symptoms to a stroke Mariarsquos felt herself at increased
risk due to her personal history of diabetes and hypertension as well as her strong
family history of three first degree relatives who had strokes
It is unclear why a close family history of stroke contributed to Mariarsquos
perception of personal risk but this was not the case for Kenzie and Teresa who
also had a parent with stroke One explanation for this difference is that Maria was
very involved in the care of her family members after their strokes whereas
Teresa and Kenzie were young adults at the time of their parentsrsquo strokes and
218
other family members took on the role of caregiver for the affected family member
Thus the stage of life at which these family experiences occurred may have
heightened perception of risk for Maria
Unlike Maria the seven women in this study whose medical histories
included factors that placed them at increased risk for stroke seemed unaware of
the relationship between their medical conditionhistory and stroke Although
Kenzie knew that hypertension was associated with stroke she did not think her
blood pressure readings were high enough to have caused her stroke and did not
think of herself at increased risk Louise never thought ldquoanything like thisrdquo would
happen to her Although Janersquos history of hypertension and a previous stroke
increased her awareness that her symptoms could be due to a stroke this history
had not made her feel at increased risk for another She like the other women
whose medical conditions increased their risk seemed unaware of the association
between these conditions and stroke
Natalie placed importance on family history as a risk factor for stroke as
evidenced by the fact that she repeatedly told me that there was no family history
of stroke in her family Jane arrived at the idea that her grandmotherrsquos stroke may
have in some way contributed to her own strokes only after her second stroke As
did Natalie Jane emphasized family history rather then her medical history when
talking about her risk for a stroke Even after having two strokes Jane was unsure
if she was at risk for another These findings appear consistent with a previous
219
report that perception of being at risk for stroke was low among women with at
least one risk factor for stroke (Dearbornamp McCullough 2009)
Beliefs about stroke and stage of life may have contributed to either
perception of risk or symptom evaluation or both for several participants Thirty‐
four year old Lisa said she knew very little about stroke and had never thought
about having one Tiffany (age 24 years) and Teresa (age 50) believed that stroke
only happened to old people In telling her story Tiffany directly linked her belief
that stroke only happened to old people with the fact that at stroke onset she did
not connect her symptoms with the diagnosis provided by a nurse co‐worker
What sick means
Part of the context or the interrelated conditions within which stroke
occurred were ideas about illness In four of the narrative accounts participantsrsquo
ideas about what being sick meant were relevant to their evaluation of symptoms
In these instances the women had not thought of themselves as sick during early
stroke which affected their evaluation and responses to the symptoms of early
stroke Participantsrsquo ideas about what sick meant had to do with their ability to
carry on with usual activities specific types of physical changes and the time that
symptoms lasted
Louisersquos ideas about what being sick meant had more to do with her
inability to carry on with her usual activities than a particular type of bodily
change She said that in order for her to go to the doctor shersquod have to be ldquopretty
220
sick or somethingrdquo On the night of her stroke she didnrsquot know why she had to go to
a hospital because she wasnrsquot feeling ldquobadrdquo Louise said that if she was feeling bad
or sick ldquoI canrsquothellipdo anythingrdquo The fact that her stroke happened in the evening
when she was resting may have contributed to Louisersquos perception of herself as not
feeling bad If Louisersquos stroke occurred in the morning while she was actively
engaged in household activities she might have considered her self sick
In contrast to Louisersquos idea of sick as dependent upon not being able to
continue usual activities other participantsrsquo ideas about the meaning of being sick
included specific symptoms For Kenzie sick meant having a contagious condition
of respiratory or gastrointestinal origin This idea was formed in the context of her
social role as an elementary school teacher where she had frequent experience of
these types of symptoms She had not considered her self sick during the week
prior to her admission to the hospital because her symptoms had not fit with her
idea of sick
Natalie similarly thought of being sick in terms of specific symptoms In her
case sick meant having a cough or pain in a part of her body other than her head
Like Kenzie she had not considered herself sick when she had prodromal
symptoms because her symptoms did not match her ideas of sick If they had
Natalie said she would have been more likely to seek medical assistance
The duration of symptoms also contributed to ideas about what constitute
sick An additional component of Nathaliersquos definition of sick was that she
221
considered herself sick if symptoms lasted more than three or four day Jane was
accustomed to feeling ldquobadrdquo and she judged the line between this state and ldquosickrdquo
according to how long feeling bad lasted
Symptom Response
The womenrsquos stories revealed that they experienced a variety of cognitive
emotional and behavioral responses after noticing their symptoms These
responses often were interrelated as when for example an emotional response
was linked in a womanrsquos story with a subsequent action This section is divided
into five subsections The first three subsections address similarities and
differences in three types of response to symptoms self‐body talk emotional
response and behavioral response Then the context of symptom response is
discussed In the final subsection the role of other people in symptom response is
discussed
Selfshybody talk
Cognitive responses to symptoms involved conscious intellectual activities
such as thinking reasoning or remembering Participantsrsquo cognitive responses to
symptoms were discussed in the previous section as they related to participantsrsquo
evaluation of their symptoms An additional cognitive response to symptoms
reported by the women in this study involved their attempts to reason with or
otherwise communicate with their bodies which included talking to themselves
about what was occurring
222
Faircloth et al (2005 p 944) reported that men in their study engaged in
an internal ldquocommunicative actrdquo whereby they carried on a conversation with
themselves in aid of gaining understanding about what was happening to them at
stroke onset There were similar instances in the present study Kenzie described
sending ldquoa messagerdquo to her left arm after she fell to grab the TV stand and push
herself up and instructing her feet to pick themselves up and set themselves down
as she walked Maria admonished her leg that ldquoit had better stop acting that wayrdquo
when it became weak and numb and no longer was under her control She said
ldquoSometimes you have tohellip tell it itrsquos going to do what you want it to and not what it
wants to dordquo For these women self‐body talk was carried out in an attempt to
regain control over their bodies These instances of self‐body talk were further
illustrations of womenrsquos perceptions of their bodies as out of control and separate
from themselves during early stroke
Natalie talked to her self in aid of trying to figure out why she was so tired
She asked why she was so tired and developed a commentary about how she felt
When telling her story Natalie arrived at the conclusion that later in the trajectory
of her stroke and specifically on the day she was admitted to the hospital she also
talked to herself as a way to compensate for the fact that her ability to think had
been compromised As with Maria and Louise Nataliersquos internal communicative act
during early stroke also was with God Natalie engaged in conversation with God in
which she asked for the strength to get though the day at work and for help finding
223
her way back home when she no longer recognized her surroundings Maria
similarly prayed for a safe journey before she and her husband set out for the
hospital on the day of her stroke
Emotional response
Fear often accompanies the recognition that a symptom may be serious
(Smith Pope amp Botha 2005) There were differences in the narrative accounts
with regard to whether or not participants experienced fear in response to their
symptoms Fear was reported during early stroke by Jane Lisa Tiffany Natalie
Teresa and Ellen whereas Kenzie Maria and Louise said that they had not felt fear
It is possible that Kenzie was not afraid because she had consulted a physician
about her symptoms and received a diagnosis that she did not view as serious (eg
a virus) This seems consistent with her reliance on scientificmedical knowledge
in evaluating her symptoms
For the participants who felt fear this emotion often was related to a
particular symptom and the meaning of that symptom Being stuck on the couch
evoked fear for Ellen in a way that her other symptoms had not but she could not
articulate what it was about that particular experience that so frightened her It is
possible that ldquonot knowing what was going onrdquo when Ellen was unable to rise from
the couch was frightening because she had no similar previous experience with
which to explain this event Alternatively of all her symptoms this was the one that
caused her to be unable lsquoto dorsquo and thus changed her whole way of being in the
224
world As such it may have represented a threat in a way that her other symptoms
did not In similar manner Nataliersquos sudden perception that her surroundings
were unfamiliar was associated with fear because unlike her previous symptoms
this symptom was interpreted by her as a threat to her safely and her ability to get
home
Lisarsquos inability to express herself by talking was another example of a
relationship between the meaning of a particular symptom and fear She described
herself as a ldquobabblerrdquo who was always talking with family and friends and she
twice emphasized that if I asked anyone about her personality they would
comment on her talkativeness That stroke contravened such an essential aspect
of Lisarsquos self image was frightening and threatening Lisa linked the fear she felt
when she realized she wasnrsquot ldquorightrdquo but could not express what was wrong with
previous instances when she was afraid for her childrenrsquos safety during a time of
illness According to Gubrium amp Holstein (1977) ldquonarrative linkagesrdquo such as these
tie various elements of the story together in order to produce meaning One
essential meaning of stroke onset for Lisa was that this was the first time in her life
she felt a serious threat to her own well being
Although Maria said she did not feel fear during early stroke I wondered if
she had felt some degree of apprehension by another example of narrative linkage
As Maria described how she had resolved on the way to the hospital not to ldquolet this
get seriousrdquo she suddenly switched topics and began to discuss the importance of
225
coping with her stroke as her father has coped with his She drew a sharp contrast
between her fatherrsquos style of coping which was characterized by a positive attitude
and working hard to regain his abilities after stroke with the way her mother and
sister had ldquolet stroke control themrdquo The narrative linkage between not wanting to
acknowledge how serious her situation was and the way that various family
members coped with their strokes suggested that Maria may have felt
apprehension about the outcome of her stroke
Apprehension about the outcome of stroke also was at the root of Janersquos
fear at stroke onset With the exception of her first stroke which resulted in
aphasia but had not substantially altered her ability to continue her usual pursuits
Janersquos only other experience with stroke had been with her grandmother whose
stroke caused her to be dependent on others for basic activities of daily living At
stroke onset Janersquos fear was related to her uncertainty about the extent to which
this stroke would affect her independence and ability to function
With the exception of Lisa no other participant indicated that she
interpreted her symptoms as a threat to life This was in contrast to qualitative
investigations in which cancer symptoms were seen as a threat to life (Lindwall amp
Bergbom 2009) However other types of threat were implied in participantsrsquo
emotional responses to their symptoms For example as the caregiver for her long
time boyfriend and the couplersquos only means of financial support Teresarsquos stroke
represented a threat to their financial stability and way of life The meaning of this
226
threat most likely was the cause of Teresarsquos strong feeling that she could not lose
control at stroke onset
Behavioral response
The behavioral responses to stroke symptoms by the participants in this
study took many forms At some point after they noticed their symptoms the
participants reported trying to carry on with usual activities (Ellen Kenzie Louise
Natalie and Teresa) lying down (Louise Natalie and Teresa) seeking help from
another person (Jane Lisa Maria and Natalie) delaying sleep (Ellen) getting more
rest (Kenzie and Natalie) self‐medicating (Maria and Natalie) checking blood
sugar and blood pressure (Natalie) and obtaining medical consultation for
prodromal symptoms (Kenzie) The across case analysis revealed how
participantsrsquo behavioral responses to symptoms were related to (1) symptom
evaluation and (2) emotional responses to symptoms
Symptom evaluation and behavioral response
A similarity in the narrative accounts was the way in which behavioral
responses to symptoms grew out of participantsrsquo evaluations of those symptoms
By constructing the temporal dimension of early stroke in the narrative accounts
it was possible to see how womenrsquos behavioral responses to symptoms developed
over time and in association with their opinions about the severity cause and
course of the symptoms
227
In several of the narrative accounts symptoms were at first normalized and
the actions taken in response to those symptoms were those that in the normal
course of events an individual might engage in for that particular bodily change
For example Lisa attributed her first symptoms as due to a benign every day
cause (eg lack of sleep) and her actions were consistent with that evaluation (eg
going to bed) Louise assumed that her prodromal symptoms were example of an
everyday and transient bodily occurrence and so she took no action in response to
these symptoms Nataliersquos initial behavioral response to her evaluation that her
symptoms were due to tiredness was to get more rest after work and reduce social
activities Kenziersquos behavioral responses were consistent with her acceptance of
the diagnosis of a virus and the advice she received from her physician and the
school nurse She took medication that had been prescribed for her nausea rested
in bed increased her fluids and returned to work on the day her doctor said she no
longer would be contagious As is discussed in a later section of this chapter
contextual factors informed Kenziersquos behavior in response to her symptoms
When symptoms worsened or new symptoms developed that substantially
interfered with activities different behavior responses were undertaken in
response to new symptom evaluations When Nataliersquos prodromal symptoms
worsened and she developed new symptoms that substantially interfered with her
ability to function she reevaluated her opinion that her symptoms were benign
which led her eventually to call her son for help Mariarsquos realization that her
228
symptoms indicated a stroke led to several behavioral responses on her part that
included testing her body seeking help from other people and taking aspirin
These behaviors reflected her evaluation that a stroke was in progress which in
turn was associated with the recognition that a particular type of symptom (eg
one sided weakness) was associated with stroke In taking these actions Maria
called upon her stock of knowledge (Schutz 1970) about the physiology of stroke
the role of aspirin in blood clotting and how to test for the muscle weakness of
stroke
As seen above typification (Schutz 1970) has consequences for action By
categorizing a symptom as representative of a particular type all the features of
that category are included in that categorization (Gubrium amp Holstein 1997) In
other words the usual behavioral responses to a particular type of occurrence
were enacted by participants once an experience has been categorized The actions
that followed symptoms typified as benign every day occurrence were those that
would be taken under usual circumstances The actions that followed the
recognition of symptoms as serious or due to a stroke in most cases led to help
seeking However there were cases (Ellen and Teresa) where acute symptoms
were not attributed to a cause and even though considered serious did not lead to
help seeking behaviors A possible explanation for the actions taken by Ellen and
Teresa in response of symptoms is discussed below in the following subsection on
emotional response and behavior
229
Emotional response and behavioral response
Previous research results were suggestive that fear was a barrier to seeking
help for cancer symptoms (Smith et al 2005) For the participants in this study
who felt afraid in response to their symptoms fear was associated with seeking
help as well as with other behaviors Lisarsquos fear in response to her realization of
ldquoIrsquom not rightrdquo led her to immediately seek out her mother Jane felt frightened
upon the realization that her symptoms were not due to migraine which led her to
tell her husband about her symptoms
In contrast to instances in which fear led to help seeking behavior other
women who responded to their symptoms with fear took other actions Teresarsquos
narrative construction of her decision to lie down and sleep after stroke onset
explained how fear led to actions other than help seeking Her narrative account
revealed how her initial behaviors in response to symptom flowed from her
evaluation that her symptoms were serious and the emotions she felt in response
to that realization
Teresa first linked her evaluation of her symptoms as serious with her need
to stay in control and not be afraid ldquoI knew there was something wrong and I tried
to control myself In my mind I knew I couldnrsquot get scaredrdquo That Teresa said she
couldnrsquot get scared suggests that she did in fact feel afraid in response to her
recognition that something was seriously wrong Teresa then linked fear with the
decision to lie down and sleep ldquoAnd I tried and I tried in my mind I knew I
230
couldnrsquot get scaredhellip I figured at the moment the best thing for me to do was to go
to sleephelliprdquo The narrative construction of the decision to go to sleep was suggestive
that getting scared was not unacceptable to her because it meant being out of
control In the context of her life Teresarsquos symptoms were a threat to her role as a
caregiver and head of household
In another instance in which fear did not lead to immediate help seeking
Ellen decided to stay up all night watching TV rather than risk another episode of
being stuck on the couch a symptom she had found very frightening It is unclear
why Ellen did not call for help when she developed this frightening symptom and
instead waited until the next afternoon to inform her mother about her symptoms
Her story was suggestive that she retained the capacity to do so My first
introduction to Ellen had been her mother telling me that her daughter was
ldquomanipulativerdquo Although I gave Ellen an opening during an interview to talk about
her relationship with her mother I did not learn anything that illuminated why
Ellen did not call her at the time she experienced this frightening event
Context of symptom response
A premise of a narrative perceptive on human existence is that all of human
experience occurs within a personal social and cultural sphere of understanding
(Polkinghorne 1988) Gender social roles and socioeconomic status influenced the
decisions choices and actions the women in this study took in response to
symptoms There were examples in the narrative accounts of how the needs of
231