Copyright by Claudia Calle Beal...the dean of Baylor University, Louise Herrington School of Nursing...

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

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

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

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)

Clinical status at time of maximal impairment

Garg200

ano et al 9

US

1922(54) I(67) TIA(23)

H(10)

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)

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

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)

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

) 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

N = 292 77 IS

17 (49)

Not perceiving symptoms as emergency No EMS

Pandian et al 2006 India

N = 147 4 (33)

Absence of aphasia

Rosamond et al

s 1998 United State

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

N = 409 IS

(56) M 69

le 229 Fema

LSS No EMS

Smith et al

1998 United States

N = 1895 IS

0 (47) M 66 Female 89

Problems with ADL Impaired vision unsteadiness headache

Wester e1999

t al

Sweden

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

N = 67 96 IS M 64 Female 28(41)

No EMS

Williams et al2000

tates

United S

N = 87 IS M 68

6 (52) Female 4

Not attributing symptoms to stroke or attributing

symptoms to anothercause

Yu et al 2002 Philippines

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

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

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

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

other people figured into womenrsquos decisions and actions after stroke onset

Despite great difficulties walking Natalie went outside to meet her son to save him

the trouble of him parking and coming inside her apartment Mariarsquos decision to

seek emergency care at a hospital an hour away was indicative of her preferences

for the familiarity of her hometown medical system but also reflected her concern

for her husbandrsquos welfare Despite her realization that something was seriously

wrong when she developed severe dizziness Teresa stopped on her way to lie

down in order to make lunch for her boyfriend an action consistent with her role

as Juanrsquos caregiver

Teresa also did not tell the son who was present at the time of stroke onset

about her symptoms because he was upset about a fight with his girlfriend

However an alternate explanation for this action is that Teresa might not have

wanted him to know about her symptoms because this could have interfered with

her plan to avoid the implications of her symptoms by going to sleep In similar

vein Maria did not tell her husband when new symptoms developed because she

thought he might abort their plan to drive 60 miles to their hometown hospital

That a concern about other people figured into the participants responses

to their symptoms seems consistent with previous literature on gender differences

in symptom response to cardiac symptoms (Moser et al 2005 Schoenberg et al

2003) and cancer symptoms (Smith et al 2005) In these studies womenrsquos

reluctance to inconvenience others or concerns about the effects of a serious

232

illness on their families caused them to delay seeking help for symptoms Findings

from these studies were consistent with Mariarsquos and Teresarsquos stories

Kenziersquos decision to return to work on Wednesday even though her

symptoms had not improved was informed by her ideas about gender roles and

gender differences in illness behaviors In constructing a narrative explanation of

why she returned to work despite feeling no better Kenzie described how women

ldquowork thoughrdquo physical ailments in contrast to men who in her view are more

likely to adopt the sick role She attributed these gendered ideas about illness

behavior to her observations of patterns of behavior in society and the example of

her mother who also ldquoworked thoughrdquo

Natalie also ldquoworked throughrdquo her symptoms Nataliersquos pride in her

employment history was evident when she talked with me about how she had

worked since she was 16 years old to support herself and her family Nataliersquos self‐

image as a responsible employee was the reason she did not call in sick for

prodromal symptoms even though in retrospect she evaluated her symptoms as

bad enough to do so

Socioeconomic status and self image figured into Teresarsquos decision to go to

the hospital by car rather than in an ambulance Living in an area with a high crime

rate and having previously been the victim of a burglary caused Teresa to fear that

an ambulance outside her house would ldquodraw attentionrdquo to her absence However

Teresarsquos immediate response to her sonrsquos proposal to call 911 was indicative that

233

she like Louse found the idea of being transported in an ambulance unpleasant

Louise wanted to avoid the ldquofussrdquo that occurs whenever an ambulance is

summoned to a residence by which she meant the gathering of onlookers and the

attendant unwelcome attention Teresarsquos embarrassment at the idea of being seen

on a stretcher by other people had its origins in her self image as ldquothe healthy onerdquo

in her family This image would have been spoiled if she were seen as so ill that she

had to be transported to a hospital in an ambulance and served to motivate Teresa

to get out of bed and let her son drive her to the hospital

Another example of self image contributing to symptom response was

Nataliersquos ideas about people who complained about physical symptoms a practice

she found distasteful She held the view that it was usually people who did not

have serious health problems who tended to complain and she found these

complaints tedious and often out of proportion to the seriousness of the actual

physical malady She tried not to complain when she had physical symptoms

because she did not want other people to view her in the negative light with which

she viewed people who exhibited this tendency This was one reason she did not

talk about her symptoms to anyone during the week prior to diagnosis

Another contextual factor that contributed to Nataliersquos reluctance to

complain was a world view about the consequences of negative thinking Natalie

believed that bad things are drawn to people who think or verbalize negative

thoughts This belief was a reason why she did not ldquothink bad thingsrdquo seven

234

months prior to her stroke when she felt those strange happenings and why she

did not talk to anyone about her tiredness and headache in the week prior to her

admission to the hospital for her stroke

Role of other people

In the extant stroke research people other than the affected individual often

made the decision to seek medical care for symptoms (Derex et al 2002) The

findings of this study add to existing research by providing more information

about the roles of other people prior to hospital arrival In some cases the role of

other people seemed straightforward as when the relatives of Jane Lisa and

Natalie and Tiffanyrsquos coworkers were reported to respond immediately upon

recognizing that something was wrong by calling EMS or driving the affected

person to the hospital In other cases in this study however the responses of other

people appeared more complex and perhaps were reflective of gender roles during

times of family illness interpersonal dynamics andor other peoplersquos ideas about

health conditions

When Louise told her story she related how her son after finding her on the

floor wanted to call an ambulance but she dissuaded him from doing so Instead

he called his sister who came to her motherrsquos house decided her mother was

having a stroke and called 911 In an almost identical scenario Teresa narrated

how her son found her in bed recognized that something was wrong and then

sought advice from his sister who instructed her brother to take Teresa to the

235

emergency department Family members consulting with another relative prior to

obtaining medical assistance for an elderly relativersquos stroke also was a finding in

the Eaves (2000) study

Despite misgivings about Mariarsquos decision to travel home for emergency

care her husband reportedly acquiesced to her plan to do so That he and the male

family members of other women apparently relinquished medical decision making

during early stroke may have been reflective of socialization process that resulted

in women being the keepers of health information and the health decision makers

in families (Kandrack Grant amp Segall 1991 Verbrugge 1985)

Kenzie reported that her husband Seth was influential in the construction

of her ideas about the cause of the symptoms and in medical decision making She

recalled that he first attributed Kenziersquos symptoms to food poisoning and then

decided something else was to blame for her symptoms when her symptoms

continued past the time that he thought food posing would last He suggested to

Kenzie that she see her primary care physician and later in the week encouraged

her to continue resting when her symptoms worsened because of his belief that

rest heals the body Kenzie reported that it was her mother‐in‐law who

encouraged Seth to take Kenzie to the emergency room but that en route he

decided to first stop at the doctorrsquos office in order to save money on the emergency

department insurance co‐pay As her story unfolded these and other instances

236

gave me a sense of the extent to which Kenzie relied on her husband for decision

making

Jane similarly seemed to rely on her husband for decision making at stroke

onset She described him as a decisive individual and reported that it was he who

made the decision to go to the emergency department while she was still grappling

with the idea that she could be having a stroke Both Jane and Kenzie used the

word denial when describing their response to symptoms In Kenziersquos case she

used this word because she wondered how she could not have realized that

something other than a virus caused her to fall Jane described her self as briefly in

denial because she didnrsquot want to accept at first that she was having another

stroke

able 6 T Summary of Findings of the Across Case Analysis

P

237

Sensations helliphellip Making Sense of Prodromal

Similarities

erception

Difficulty

y

Evaluation

Search for the Cause

Response

y Talk Describing

QualitEssential

of Symptoms hellip Symptoms as Familiar and Strange

T

ypification ody tion

Mind BSepara

hellip

of Symptoms

M

emories of illness

Pre‐Existing Ideas about Health Conditions

odily Familiar B

Self‐Bod hellip

Fear Rel d to the ateMeaning of Symptoms

hellip B ehavioral Responses

Associa d with teSymptom Evaluation

B hellip

ehavioral ResponsesAssociat with

Emotional Response ed

Summary of Across Case Analysis

In this chapter of the dissertation similarities and differences in womenrsquos

symptom experience of early stroke were discussed Together with the collection

of narrative accounts presented in Chapter Four this chapter addressed the two

The Inability to Carry Out Activities in Accustomed

Ways

Heightened Aw f

areness o the Body

Alternations in Lived Spatiality

Loss of

Body Sense

Symptoms

Differences Cogn ges itive Chanhellip

Report of Prodromal Symptoms

Seriousn

ess of Symptoms

P hellip erce on of ptiStroke Risk

hellip he Meaning of ldquoSickrdquoT

Presence Absence or of Fear hellip

Varied B avioral ehResponses

hellip Interpersonal Interactions

Context Past Bodily Experiences

Past Experiences with Illn and the ess

Body hellip

Culture

hellip Stock of Knowledge

about Health Conditions

Social roles hellip

Gendered as about IdeSick Behavior

Socioeconomic Status hellip

hellip Self Image

Relationships hellip

hellip Religion

238

research questions about how women experienced their bodies during early

stroke and their thoughts feelings behaviors and interpersonal interactions

during this time

The bodily changes of early stroke were described by participants as both

familiar and strange The women used simile to relate symptoms to other types of

bodily sensations The perception of the body as strange was seen in the womenrsquos

descriptions of their body as in some way separate from the self There was a

tendency for the women to objectify a body that was not cooperative to their will

A difference in the narrative accounts with regard to symptom perception was that

three of the nine participants described experiencing alterations in their cognitive

functioning during early stroke

An essential theme of the across case analysis was that early stroke was

experienced as the inability to perform routine activities in usual and accustomed

ways The difficulties encountered by the women as they tried to perform their

projects in the world were accompanied by heightened awareness of their bodies

alterations in their perceptions and experiences of lived space and a disturbance

in their ability to interpret their world which was manifest as a loss of the intuitive

sense of the body

There were differences in the accounts with regard to whether or not the

initial symptoms of early stroke were considered serious Symptoms considered

serious for the most part were those that greatly interfered with carrying out

239

activities whereas symptoms that did not do so generally were not considered

serious Thus symptoms evaluated as everyday bodily sensations were not

considered serious There were cases in which a participant adapted to her

symptoms enabling her to continue performing her activities thus rendering

symptoms not serious Evaluations of symptom severity sometimes changed over

time as existing symptoms worsened or new symptoms developed

There was great variation in the narrative accounts as to the course or

trajectory of early stroke A striking difference in the accounts was the variability

in the length of time between symptom onset and hospital arrival which ranged

from one hour to one week There also were differences in the pattern of symptom

development Whereas some womenrsquos symptoms remained relatively unchanged

from the time they first noticed symptoms until hospital arrival other women

continued to develop new symptoms during this period of time

Every participant in this study reported attributing their symptoms to at

least one cause and these causes included a variety of medical conditions as well

as everyday bodily occurrences The causes to which a woman attributed her

symptoms sometimes changed over time Categorizing symptoms involved

associating symptoms with a previous instance of a similar type When associating

a symptom with a particular health condition participants drew upon memories of

past instances of illness or injury The participants ldquotried outrdquo possible

240

explanations when they compared their symptoms with existing ideas about

health conditions which were formed through interaction with the social world

A major difference in the accounts was that two of the nine participants

attributed their symptoms to stroke The two women who attributed their

symptoms to stroke had either a personal history of stroke or had experienced

stroke with family members and these experiences were important to their

evaluation that a stroke was in progress That the other two women in the study

with a family history of stroke did not attribute their symptoms as such may have

been reflective of their stage of life at the time of their family membersrsquo strokes

All the women with the exception of 34 year old Lisa had factors that placed

them at risk for stroke Yet Maria was the only participants who perceived that she

was at risk and this perception contributed to her evaluation that her symptoms

were due to a stroke Stage of life may have contributed to a lack of perception of

risk in that several women in the study thought of themselves as too young to have

a stroke This perception reflected tacit knowledge among the women in this study

that stroke is more frequent in older individuals The two women who attributed

their symptoms to stroke also seemed to have the most accurate knowledge of

stroke symptoms prior to their stroke In contrast other participants mentioned

that they had not known much about stroke prior to having one In several cases

womenrsquos ideas about the symptoms of stroke were more compatible with the

symptoms of heart attack

241

The social context within which ideas about illness in general and stroke in

particular were formed contributed to participantsrsquo ideas about stroke onset and

to narrative explanations for why symptoms were not attributed to stroke Based

on past experiences some participants thought that a stroke would be suddenly

incapacitating or associated with objective signs such as high blood pressure

readings Consistent with the idea of stroke as suddenly incapacitating the women

in this study whose symptoms evolved over a period of days expressed surprise

about this trajectory These women thought of stroke as something that came out

of the blue and was so dramatic that it would render them unable to function

Interestingly several participants did not think of themselves as sick during early

stroke because their symptoms were not compatible with their ideas about what

constituted an illness This may have contributed to delay seeking medical

assistance

The actions taken by participants in response to stroke onset were varied

Behavioral responses were related to how the symptoms were evaluated and to

the emotional response to symptoms Fear was the primary emotional responses

to stroke onset and was reported by all except three participants Whereas in some

cases feeling afraid led a participant to seek help in other instances fear led to

other responses such as going to sleep to avoid the reality of what was happening

or alternatively avoiding sleep to avoid the possibility of a reoccurrence of a

distressing symptom The meaning of a particular symptom to a woman was

242

related to feeling fear and subsequent actions Only one participant explicitly gave

voice to the fear that her symptoms represented a threat to her life In other cases

the meaning of symptoms had to do with other types of perceive threat such as

loss of the ability to have control over onersquos life The meaning of the symptom

informed action

Consistent the extant literature family members or co‐workers were

reported by the participants as instrumental in getting the women to the hospital

In some cases these individuals were described as responding to symptoms by

calling EMS or driving the woman to the hospital as soon as they became aware of

the symptoms In other cases however delays were reported as family members

consulted one another In addition sometimes participants overruled family

members when their initial response was to call EMS or go to the nearest hospital

again contributing to delay One womanrsquos story was suggestive that financial

concerns on the part of a family member resulted in delay arriving at the

emergency room Several women expressed embarrassment about going to the

hospital in an ambulance

Finally ideas about the self that were expressions of womenrsquos gender

informed decisions and actions in response to symptoms In several of the

accounts the participants ldquoworked thoughrdquo their symptoms This took the form of

continuing to meet responsibilities to others either as a caregiver spouse mother

or employee At times this also meant making decisions with the welfare of others

243

244

in mind The fact that the women continued to make decisions and take action with

the needs of others in mind was indicative that doing so was an important part of

their identity

In sum early stroke was experienced as a process occurring over time

rather than an event An event as ldquoan occurrence of observed physical reality

represented byhellip one [point] of timerdquo (wwwmiriam‐webstercom) is consistent

with the conceptualization of stroke onset as a discrete medical event However

early stroke consisted of a series of events and actions in response to these events

which eventually resulted in arrival at the emergency department These events

and actions occurred within the context of previous life experiences preexisting

knowledge and beliefs about health conditions images of the self and gender

which informed evaluations about the cause of symptoms and subsequent actions

Chapter Six Summary Conclusions and Recommendations

In this chapter the study is summarized the conclusions of the study are

discussed and recommendations are made for nursing practice and research The

summary of the study includes an overview of the purpose of the study research

questions methodology data analysis techniques and findings Conclusions drawn

from the findings of the study are then discussed Recommendations for future

studies nursing practice and public education efforts are presented last

Summary

The purpose of this narrative inquiry was to gain understanding of the

early symptom experience of ischemic stroke in women A conceptual orientation

combining phenomenological thought as it relates to the body and a narrative

perspective on human experience was used as a lens through which to view

womenrsquos stories of ischemic stroke The researcher was interested in learning

how women experienced their bodies from the time of symptom onset until they

arrived at the emergency department and their thoughts feelings behaviors and

interpersonal interactions during this period of time

The sample consisted of nine women of various raceethnicities who were

age 24 ‐ 86 years (average age of 53 years) at the time of their strokes Data

collection was achieved by in‐depth interview during which the story of stroke

was elicited Each woman was interviewed two times and the interviews lasted

from approximately one and one quarter hours to two hours in length Data

245

collection took place over a nine month period

Data analysis consisted of a two‐stage process consisting of within and

across case methods as prescribed by Polkinghorne (1995) First a narrative

account was created for each participant that ldquore‐storiedrdquo the womenrsquos story of her

early symptom experience of ischemic stroke The narrative accounts displayed

the temporal dimension of the period of time from when a participant first noticed

symptoms until she arrived at the emergency department and the context within

which stroke onset occurred The use of within case data analysis allowed the

researcher to apprehend stroke onset as a process occurring over time during

which opinions about the cause of symptoms sometimes changed This method

allowed an appreciation of the contribution of each individualrsquos unique situation to

the early symptom experience of ischemic stroke Similarities and differences in

the womenrsquos experiences were then examined in an across case analysis of the

narrative accounts The discussion of the across case analysis was structured

within the framework of the three components of symptom experience as defined

in this study perception evaluation and response

The findings were indicative that ischemic stroke onset was experienced as

the inability to carry out routine activities in accustomed ways During the time

between symptom onset and arrival at the emergency department the women

were aware that their bodies were acting in ways that were out of the ordinary and

there was a tendency to objectify the body Once the women became aware of

246

bodily changes a search for the cause for symptoms ensued During this process

the women called upon memories of past instances of illness and preexisting

knowledge of stroke and other health conditions which were formed within the

context of social interactions

Only two participants considered stroke as a possible cause for their

symptoms The other participants considered a range of causes including everyday

bodily experiences as well as other health conditions On the whole the women in

this study did not seem to possess much knowledge about the warning signs of

stroke and in several cases the symptoms of a heart attack were confused with

those of a stroke Although all but one participant had risk factors for stroke only

one of these women saw her self at risk and this perception contributed to her

evaluation that a stroke was in progress

As early stroke progressed participants took a variety of actions in

response to symptoms These responses included seeking help from another

person as well as trying to continue with usual activities The latter response also

was reported by women having a heart attack (Clark 2001) The findings of this

study were suggestive that actions taken by the participants were related to their

evaluation of and emotional response to symptoms Although evaluating

symptoms as serious was associated with prompt help seeking in previous studies

(Barr et al 2006 Mandelzweig et al 2006 Palomeras et al 2008) some women in

247

the present study who evaluated their symptoms as serious did not seek help soon

after noticing symptoms

The actions taken by the participants in response to stroke symptoms were

informed by the meaning of the symptoms and meaning was formed within the

context of womenrsquos situation in the world A central meaning of the symptoms to

the women was that the symptoms represented some sort of threat to the ability

to carry out activities in usual ways to independence or to life The response to

this threat varied and did not always lead to prompt help seeking In addition

there were instances in which the symptoms were initially attributed to benign

causes or every day bodily sensations and over time came to be evaluated as

threatening This was especially though not exclusively the case with participants

who experienced prodromal symptoms

Few women in this study 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 affected individual to the emergency department Three

participants were transported to the hospital by EMS and the other participants

were transported in a private car by a relative Consistent with what was expected

from extant research the majority of the women in this study did not arrive at the

248

hospital in time to be offered treatment with t‐PA and only one participant

received this treatment for early stroke

Discussion

Delay seeking medical assistance in response to stroke symptoms is

repeatedly cited in the literature as an important reason that many people with

ischemic stroke are ineligible for thrombolytic therapy with t‐PA This was the

problem that formed the background for this study Delays seeking medical

assistance for ischemic stroke symptoms are a concern because individuals who

delay often do not have the opportunity to consider treatment with thrombolytic

therapy which has been shown to reduce post‐stroke functional limitation and

disability (The National Institute of Neurological Disorders and Stroke rt‐PA Stroke

Study Group 1995) In addition to contributing to quality of life through reduction

of functional limitation and disability thrombolytic therapy is estimated to reduce

health care costs associated with ischemic stroke Demaerschal and Yip (2005)

estimated savings of $37 million in the first year after ischemic stroke primarily

accrued through a reduction in rehabilitation costs if 10 of all persons in the

US wit

249

h ischemic stroke received t‐PA

Although there is considerable literature on sociodemographic and clinical

correlates of hospital arrival time after stroke onset there is less research on

cognitive emotional and behavioral correlates of arrival time and even fewer

studies have provided an in‐depth examination of the period of time between

symptom onset and hospital arrival This is the only study of which the researcher

is aware in which womenrsquos experiences between symptom onset and emergency

department arrival were recreated in narrative accounts in order to gain greater

understanding of this period of time

One aim of a narrative inquiry is to arrive at a narrative explanation for a

particular outcome (Polkinghorne 1995) In the present study womanrsquos arrival at

the hospital after noticing the symptoms of ischemic stroke was the event shared

by the participants The findings of this study were suggestive that narrative

explanations for the timing of participantsrsquo arrival at the hospital variously had to

do with whether or not symptoms were recognized as due to a stroke by the

participant and those around her and the meaning of the symptoms for the

women The events actions and decisions leading up to hospital arrival occurred

within the context of a womenrsquos life situation which shaped the whole of symptom

experience

Levanthal et al (1980) theorized in the Common Sense Model of Illness that

actions taken in response to symptoms are based on mental representations of an

illness one part of which is knowledge about the symptoms associated with a

particular illness It would follow that greater knowledge about the warning signs

of stroke might lead to prompt hospital arrival after symptom onset (Zerwic et al

2007) Most participants in the present study indicted vague or imprecise

knowledge about the symptoms of stroke prior to having one and few of the

women attributed their symptoms to a stroke Lack of knowledge could have

250

contributed to delay on the part of a number of the women in this study to obtain

medical help However it should be pointed out that previous research did not find

an association between reported knowledge of stroke symptoms and when an

individual arrived at the hospital (Kothari et al 1997 Williams et al 1997)

There appeared to be a disconnection between professional notions of

stroke onset and those held by some of the participants in this study In AHAASA

public education materials the abrupt quality of stroke onset is emphasized and

the word ldquosuddenrdquo precedes each warning sign (eg sudden onset of weakness)

(httpwwwstrokeassociationorg) Some of the participants in this study did not

think of their symptoms as sudden even though their descriptions met its

dictionary definition of ldquosomething happening or coming unexpectedlyrdquo

(httpwwwmiriam‐webstercom) Participantsrsquo construction of the bodily

changes associated with ischemic stroke was as a phenomena occurring over time

that affected their ability to continue carrying out activities rather than something

that was not present one moment but present the next Part of this construction

for some participants was the belief that an individual would be unable to function

to any extent if they were having a stroke

The onset of ischemic stroke as inconsistent with participantsrsquo preexisting

ideas of this event echoed what has been reported in the qualitative literature

about womenrsquos experiences of AMI In these studies women expressed the view

that their symptoms did not coincide with their expectations of a heart attack

251

(Arslanian‐Engoren 2005 Higginson 2008 Svendlund Danielson amp Norberg

2001) Explanations for differences between womenrsquos expectations and the reality

of AMI often center on reports of gender differences in cardiac symptoms (Culic et

al 2005 Everts et al 2004) or the social construction of AMI symptoms based on

male norms (Schoenberg et al 2003) There was no evidence in the present study

that the dissonance between a participantrsquos experience during early stroke and her

pre‐existing ideas about stroke onset were related to gendered ideas about this

medical condition Rather it focused on the conceptualization of stroke onset as an

abruptly incapacitating event

The findings from the present study illuminate how lay explanatory models

of illness can differ from scientifically‐based conceptualizations (McSweeney

Allan amp Mayo 1997) Kleinman et al (1978) noted that a large part of how we

perceive evaluate and respond to symptoms takes place within the domains of

family social network and community It is within these domains that explanatory

models of illness which are comprised of peoplersquos explanations about the cause of

symptoms and ideas about the manner and timing of symptom onset are formed

(Kleinman et al 1978) The findings from the present study were illustrative of the

ways that explanatory models of stroke were formed in interaction with the social

world The difference between lay and scientific explanatory models could in part

explain the findings of this study that most participants did not recognize that their

symptoms were due to a stroke

252

The participantsrsquo lack of awareness that they were at risk for stroke may

have contributed to alternative explanations for symptoms (Kaptein et al 2007)

The results of a systematic review were indicative that women who perceived

themselves as susceptible to a heart attack were more likely to attribute their

symptoms to AMI and arrive sooner at the hospital than women who did not do so

(Lefler amp Bondy 2004) That most of the participants in this study were unaware

that pre‐existing medical conditions or family history placed them at risk for

stroke is consistent with prior research (Dearborn amp McCullough 2009)

It is possible that stage of life contributed to both lack of knowledge about

the warning signs of stroke and perception of risk Seven of the nine women in this

study were considerably younger than womenrsquos average age at the time of stroke

which was recently reported by Petrea et al (2009) as 77 years There were

indications in the interviews that some participants thought of stroke as

something that only happens to older people As such any information about

stroke warning signs that these young and middle‐aged women came across in the

course of their lives may have been interpreted as not relevant to them and thus

not retained in memory or alternatively if retained in memory then not associated

with their own situation once symptoms occurred However a participant who

was age 77 at the time of her first stroke said prior to that time she never

connected what she read about stroke in the media with her own life

253

The narrative accounts were instructive about the influence that a womenrsquos

life situation already seen as influential in symptom evaluation had on symptom

response Considering each participantrsquos life situation allowed the researcher to

gain understanding of how participantsrsquo situations in the social world informed

their decisions and actions after they noticed symptoms For the women in this

study who tried to continue with usual activities despite worsening symptoms or

who otherwise delayed help‐seeking the motivation to do so often was related to

their desire to fulfill social roles In these instances activities and responsibilities

central to the self such as being a caregiver mother spouse teacher and food

service worker informed actions taken in response to symptoms These findings

were in concert with the previous research that social demands contributed to the

timing of womenrsquos decisions to obtain help for cardiac symptoms (Higginson

2007 Moser et al 2005 Schoenberg et al 2003 Svedlund et al 2001)

Previous theorists have proposed that women may be especially attuned to

inner body states due to recurring bodily changes associated with menstruation

and childbearing (Verbrugge 1989) Kving and Kirkvold (2003) suggested that

recurring bodily changes may enable women to interpret vague or non‐specific

prodromal symptoms of stroke such as fatigue or headache as indicative that

something might be wrong The findings from the current study were suggestive

that women evaluated and responded to prodromal symptoms and the bodily

changes of early stroke not with respect to previous bodily changes associated

254

with female physiology but rather in the context of previous and present life

experiences This was consistent with Merleau‐Pontersquos (1962) view that the body

is experienced in interaction with the larger social world

The findings of this study were illustrative of how perceptions of the body

and a womanrsquos situation in the social world together influenced participantsrsquo

decisions and actions in response to symptoms along the trajectory of early stroke

This makes a new contribution to extant literature on womenrsquos early symptom

experience of stroke and provides a way to conceptualize womenrsquos decisions to

seek medical care for stroke as a process occurring over time characterized by

interplay between perceptions of the body and a womanrsquos situation in the social

world

Finally the findings of this study were instructive about the role of other

people in hospital arrival and provided support to previous reports by Eaves

(2000) and Mosley et al (2007) that family members sometimes consulted one

another before attaining medical consultation for the affected individual The

findings of the present study add to that work by illuminating how interpersonal

interactions during early stroke were embedded in pre‐existing patterns of social

relations (Pescosolido 1992) Based on the data from this study the decision to go

to the hospital mode of transport to the hospital and the choice of hospital

appeared to be product of negotiations between the participants and their family

members occurring within the context of ongoing relationships Also the findings

255

of the present study raise the possibility of gender as a factor in these negotiations

as it was male family members who were reported to consult with female

members before obtaining medical help

Recommendations

Recommendations for future research

Based on the findings of this study four recommendations are offered for

future research First suggestions are offered for researchers desiring to

investigate cognitive emotional and behavioral correlates of arrival time which

was identified by the American Heart Association Council on Cardiovascular

Nursing and Stroke Council as an area in need of further research (Moser et al

2007) The findings from this study yielded possible additional variables for

descriptive and predictive correlational studies For example fear was

experienced by the majority of women in this sample in response to symptoms

but this emotion has not yet been explored for its relationship with arrival time

The evaluation of symptoms as an everyday bodily occurrence may be examined

for an association with arrival time Researchers may wish to explore the

association between perception of risk for stroke and arrival time and if

perceptions of risk contributes to stroke illness representations

The second area that may prove fruitful in future research concerns the role

of gender in the response to stroke symptoms Previous studies by Moser et al

(2005) and Schoenberg et al (2003) were indicative that womenrsquos concerns about

256

the effect of an illness on others may have contributed to delay seeking help for

AMI symptoms In the present study concerns about others and gendered ideas

about illness behavior contributed to participantsrsquo responses in some cases

Rather than expending effort to quantify whether women or men have greater

delay seeking help after stroke onset research about the contribution of an

individualrsquos gender to their response to stroke symptoms may be of greater use to

efforts to reduce delay Exploration of the role that an individualrsquos gender may

play in symptom experience could be accomplished using either quantitative or

qualitative methods Researchers inclined to approach this work though

qualitative methods might aim for a more complete understanding of the ways

that meaning informs symptom response in women and men

The third recommendation for research concerns the need for a greater

understanding of prodromal symptoms in women This is an area that has not

received much research attention Six of the nine women in this sample reported

prodromal symptoms that for the most part were consistent with classic AHAASA

symptoms However a few women reported atypical symptoms such as fatigue or

generalized weakness Because prodromal symptoms are an opportunity to

diagnosis and treat conditions that place individuals at risk for stroke and possibly

prevent a stroke greater understanding of how women perceive evaluate and

respond to these symptoms may eventually contribute to the development of

patient educational interventions to encourage medical consultation for prodromal

257

symptoms A large descriptive study would be a much needed addition to the

literature and would provide basic information about womenrsquos prodromal

symptoms This could be accomplished utilizing one of several methods The texts

of interviews in which women describe their strokes could be analyzed using text

analysis Alternatively semi‐structured interviews could be conducted in the

hospital or rehabilitation setting to gather information about prodromal symptoms

and content analysis used to document the frequency and specific types of

prodromal symptoms the time frame in which they occur and womenrsquos

evaluations of these symptoms

Researchers also may wish to investigate gender differences in prodromal

symptoms in light of Stuart‐Shor et alrsquos (2009) report that women were more

likely than men to report a ldquosomaticrdquo or nonspecific prodromal symptom A

nonspecific symptom may be less likely to trigger the evaluation that symptoms

are due to a stroke Research endeavors using qualitative methods may investigate

differences in the ways that women and men experience prodromal symptoms

Quantitative methods such as those described in the preceding paragraph could be

employed to investigate gender differences in prodromal symptoms

A final suggestion for future research concerns the role of an individualrsquos

ethnicityrace in symptom experience Due to the modest sample size of the

present investigation there were not enough participants of any one

ethnicityrace to examine how these factors may have influenced symptom

258

experience Future researchers may examine the contribution of ethnicityrace to

the perception evaluation and response to ischemic stroke symptoms

Recommendations for stroke education

Despite media campaigns aimed to improve the number of individuals who

come to the hospital soon after they first notice symptoms delay arriving at the

hospital after stroke onset remains a barrier to t‐PA administration (Moser et al

2007) In light of the findings of this study that early stroke was experienced as the

inability to carry on activities in routine ways the designers of future public

education campaigns may wish to consider incorporating the experiential aspects

of early stroke in their programs For example commentary about not being able

to walk a straight line or bumping into the walls could be included in radio and

television advertisements about stroke Translating the warning signs of stroke

into ex ic amples from everyday life may make them more relevant for the publ

The results of previous studies were indicative that being advised by

another person to seek medical care for stroke symptoms was associated with

earlier hospital arrival (Kothari et al 1999 Mandelzweig et al 2006) In the

present study several participants reported that their male relatives were hesitant

to call EMS or took actions that delayed prompt medical attention If these findings

are supported by future studies in which the experiences and perspectives of male

family members are elicited the designers of media campaigns may wish to target

the male family members of women who may experience stroke symptoms

259

A final suggestion for education efforts concerns the addition of information

about stroke risk factors to the content of the campaigns Only one participant in

the present study saw herself at risk for stroke At present educational programs

largely emphasize stroke warning signs The results of a recent investigation by

Marx et al (2009) were indicative that the inclusion of stroke risk factors in a

multi‐media educational program was associated with increased perceptions of

risk for stroke in the community in which the program took place If perception of

being at risk for stroke is found in future studies to predict earlier hospital arrival

it may be advisable to include information about stroke risk factors in future

education campaigns

Recommendations for health professionals

The recommendations for nursing practice concern patient education The

first recommendation concerns the recognition of stroke symptoms Pamphlets

and brochures about the warning signs of stroke and heart attack are ubiquitous in

primary care settings In addition to providing these printed materials to their

clients nurses may wish to discuss the experiential aspects of stroke onset with

their clients in ways similar to those described in the preceding section on public

education campaigns By giving examples of how the onset of stroke may interfere

with the ability to carry out routine activities in accustomed ways stroke onset

will be situated within the context of womenrsquos everyday activities Doing so may

increase awareness that trouble performing daily activities may be a sign of stroke

260

Only one woman in the present study indicated that her knowledge of

stroke symptoms came from a health professional Nurses interact with individuals

at risk for stroke in many settings and these interactions are opportunities to

educate nursing clients about stroke In addition to the AHAASA warning signs of

stroke nurses may include in their patient education efforts information about the

specific medical conditions that place women ‐ and men ‐ at risk for stroke This

recommendation is in concert with results from the Dearborn and McCullough

(2009) that knowledge of the association between conditions such as carotid

stenosis and atrial fibrillation was low among women with stroke risk factors and

also with previous reports that men lagged behind women in stroke awareness

(Schneider et al 2003)

The third recommendation for patient education is the need to emphasize

the need for prompt medical attention for suspected stroke symptoms regardless

of the degree of symptom severity Some of the women in this study believed that

stroke onset is associated with the total inability to function or that certain

symptoms are more serious than others Nurses should inform clients that the

symptoms of stroke can range in severity from mild to severe and that all

symptoms suggestive of stroke regardless of severity warrant prompt medical

consultation

Public stroke education campaigns include information about the need to

promptly call 911 for suspected stroke symptoms

261

(httpwwwamericanheartorg) Several of the women in this study revealed

negative perceptions about transport to the hospital by EMS There also were

instances in which a participant reported that her husband believed he could get

his wife to the hospital quicker than an ambulance or was otherwise reluctant to

call EMS Nurses can explore with women their feelings about calling EMS to learn

more about the barriers that may exist to taking this action In these conversations

nurses also can convey evidence from the literature that individuals who arrive at

the ED by ambulance are seen sooner than persons who arrived by other means

(Mohammad et al 2006) and are more likely to receive t‐PA (Deng et al 2006)

Including this information in patient education efforts would reinforce AHAASA

messages about the importance of calling 911 for possible stroke symptoms

Finally only one women in the present study mentioned knowledge of a

treatment for ischemic stroke Researchers recently reported that only one‐third of

persons participating in a telephone survey indicated awareness that a treatment

was available for stroke and only half of these individuals knew it had to be given

within three hours of symptom onset (Anderson Rafferty Lyon‐Callo Fussman amp

Reeves 2009) By including information about the existence of t‐PA in their patient

education efforts nurses can help increase awareness among the public about the

availability of this treatment

262

Conclusion

It has been almost 15 years since t‐PA was approved as an early treatment

for ischemic stroke It was also about that time that Camarata et al (1994) began

to make the case that stroke or a ldquobrain attackrdquo should be considered analogous to

a heart attack in terms of the sense of urgency with which the symptoms of stroke

should be met by health providers and the public With the establishment of

primary care stroke centers an increasing number of hospitals have the capability

to provide thrombolytic treatment early in the course of ischemic stroke (Alberts

et al 2005) There has not been a corresponding sense of urgency in how the

public responds to stroke symptoms

Community based education efforts that rely on knowledge of stroke

symptoms alone have not been effective in reducing delay reaching the hospital

after symptom onset (Moser et al 2007) Before effective stroke education efforts

can be developed the meaning of symptoms must be understood For that to

happen health providers health educators and researchers must take the time to

listen to individuals who have had strokes to uncover how the experience of stroke

onset is embedded in the personal cultural and social realms of human existence

Combining narrative and phenomenological perspectives as the conceptual

orientation to examine womenrsquos experiences of early stroke allowed the

researcher to gain a fuller understanding of stroke onset in women than provided

in the existing literature Fear denial conflicting social demands social

263

264

interactions ideas of the self and a mismatch between bodily experiences and

preexisting ideas about stroke informed decision making during early stroke for

the women in this study This initial investigation provided a way to begin to

conceptualize the experience of early stroke for the approximately 300000

omen each year in the United States who develop the symptoms of stroke w

Appendix A Review Board Materials

265

OFFICE OF RESEARCH SUPPORT

THE UNIVERSITY OF TEXAS AT AUSTIN

10 Box N26 Austin (exas 711713 (512) rl-1i1l71-FAX(512 rl-1i1l73) North Office BUilding A Suite 5200 (Mud code A32(0)

FWA 00002030

Date 0210509

PI(s) Claudia CHeal Department amp Mail Code NURSING SCHOOL

Title Womens Early Symptom Experience or Ischemic Stroke A Narrative Study

IRB APPROVAL -IRB Protocol 2008-12-0042

Dear Claudia C Beal

In accordance with Federal Regulations for review of research protocols the Institutional Review Board has reviewed the above referenced protocol and found that it met approval under an Expedited category for the following period of time 02052009 - 02042010 (expires 12am [midnighl) orhis dale)

Expedited category of approval

0(1) Clinical studies of drugs and medical devices only when condition (a) or (b) is met (a) Research on drugs for which an investigational new drug application (21 CFR Part 312) is not required (Note Research on marketed drugs that significantly increases the risks or decreases the acceptability of the risks associated with the use of the product is not eligible for expedited review) (b) Research on medical devices for which (i) an investigational device exemption application (21 CFR Part 812) is not required or (ii) the medical device is clearedJapproved for marketing and the medical device is being used in accordance with its clearedapproved labeling

0(2) Collection of blood samples by finger stick heel stick ear stick or venipuncture as follows (a) from healthy non-pregnant adults who weigh at least 110 pounds For these subjects the amounts drawn may not exceed 550 ml in an 8 week period and collection may not occur more frequently than 2 times per week or (b) from other adults and children2 considering the age weight and health of the subjects the collection procedure the amount of blood to be collected and the frequency with which it will be collected For these SUbjects the amount drawn may not exceed the lesser of 50 ml or 3 ml per kg in an 8 week period and collection may not occur more frequently than 2 times per week

o 3) Prospective collection of biological specimens for research purposes by Non-invasive means Examples

(a) hair and nail clippings in a non-disfiguring manner (b) deciduous teeth at time of exfoliation or if routine patient care indicates a need for extraction (c) permanent teeth if routine patient care indicates a need for extraction (d) excreta and external secretions (inclUding sweat) (e) uncannulated saliva collected either in an un-stimulated fashion or stimulated by chewing gumbase

or wax or by applying a dilute citric solution to the tongue (I) placenta removed at delivery (g) amniotic fluid obtained at the time of rupture of the membrane prior to or during labor

Claudia_Beal

Text Box

266

(h) supra- and subgingival dental plaque and calculus provided the collection procedure is not more invasive than routine prophylactic scaling of the teeth and the Process is accomplished in accordance with accepted prophylactic techniques

(i) mucosal and skin cells collected by buccal scraping or swab skin swab or mouth washings 0) sputum collected after saline mist nebulization

o (4) Collection of data through noninvasive procedures (not involving general anesthesia or sedation) routinely employed in clinical practice excluding procedures involving x-rays or microwaves Where medical devices are ernployeO tney must be Clearedapproved for marketing (StUdies intended to evaluate the safety and effectiveness of the medical device are not generally eligible for expedited review including studies of cleared medical devices for new indications) Examples

(a) physical sensors that are applied either to the surface of the body or at a distance and do not involve input of significant amounts of energy into the subject or an invasion of the subjects privacy

(b) weighing or testing sensory acuity (c) magnetic resonance imaging (d) electrocardiography electroencephalography thermography detection of naturally occurring

radioactivity electroretinography Ultrasound diagnostic infrared imaging doppler blood flow and echocardiography

(e) moderate exercise muscular strength testing body composition assessment and flexibility testing where appropriate given the age weight and health of the individual

o (5) Research involving materials (data documents records or specimens) that have been collected or will be collected solely for non-research purposes (such as medical treatment or diagnosis) (NOTE Some research in this category may be exempt from the HHS regUlations for the protection of human SUbjects 45 CFR 46101 (b)(4) This listing refers only to research that is not exempt)

~ (6) Collection of data from voice video digital or image recordings made for research purposes

~ (7) Research on individual or group characteristics or behavior (including but not limited to research on perception cognition motivation identity language communication cultural beliefs or practices and social behavior) or research employing survey interview oral history focus group program evaluation human factors evaluation or quality assurance methodologies (NOTE Some research in this category may be exempt from the HHS regulations for the protection of human subjects 45 CFR 46101 (b)(2) and (b)(3) This listing refers only to research that is not exempt)

o Please use the attached approved informed consent

o You have been granted Waiver of Documentation of Consent According to 45 CFR 46117 an IRB may waive the requirement for the investigator to obtain a signed consent form for some or all subjects if it finds either

o The research presents no more than minimal risk AND

[J The research involves procedures that do not reqUire written consent when performed outside of a research setting

ltORgt o The principal risks are those associated with a breach of confidentiality concerning the subjects participation in the research

AND [] The consent document is the only record linking the subject with the research

AND o This study is not FDA regUlated (45 CFR 46117)

AND o Each participant will be asked whether the participant wishes documentation linking the participant with the research and the participants wishes will govern

You have been granted Waiver of Informed Consent According to 45 CFR 46116(d) an IRB may waive or alter some or all of the requirements for Informed consent if

o The research presents no more than minimal risk to subjects o The waiver will not adversely affect the rights and welfare of SUbjects

Claudia_Beal

Text Box

267

o The research could not practicably be carried out without the waiver and o Whenever appropriate the subjects will be provided with additional pertinent information they have participated in the study o This study is not FDA regulated (45 CFR 46117)

RESPONSIBILITIES OF PRINCIPAL INVESTIGATOR FOR ONGOING PROTOCOLS

(1) Report immediately to the IRB any unanticipated problems

(2) Proposed changes in approved research during the period for which IRS approval cannot be initiated without IRB review and approval except when necessary to eliminate apparent immediate hazards to the participant Changes in approved research initiated without IRS review and approval initiated to eliminate apparent immediate hazards to the participant must be promptly reported to the IRS and reviewed under the unanticipated problems policy to determine whether the change was consistent with ensuring the participants continued welfare

(3) Report any significant findings that become known in the course of the research that might affect the willingness of SUbjects to continue to take part

(4) Insure that only persons formally approved by the IRS enroll SUbjects

(5) Use only a currently approved consent form (remember approval periods are for 12 months or less)

(6) Protect the confidentiality of all persons and personally identifiable data and train your staff and collaborators on policies and procedures for ensuring the privacy and confidentiality of participants and information

(7) Submit for review and approval by the IRS all modifications to the protocol or consent form(s) prior to the implementation of the change

(8) Submit a Continuing Review Report for continuing review by the IRS Federal regulations require IRB review of on-going projects no less than once a year (a Continuing Review Report form and a reminder letter will be sent to you 2 months before your expiration date) Please note however that if you do not receive a reminder from this office about your upcoming continuing review it is the primary responsibility of the PI not to exceed the expiration date in collection of any information Finally it is the responsibility of the PI to submit the Continuing Review Report before the expiration period

(9) Notify the IRS when the stUdy has been completed and complete the Final Report Form

(10) Please help us help you by including the above protOCOl number on all future correspondence relating to this protocol

Sincerely

~ ~ 1-middot ( I ~ CftJ-VJJ 1 I I

----- VIV Jody L Jensen PhD Professor Chair Institutional Review Board

Protocol Number 2008-12-0042 Approval Dates 02052009 - 02042010

Claudia_Beal

Text Box

268

Recruitment Flier

Women and Stroke Research Study

Are you a woman age 21 and older who had an Ischemic Stroke (stroke caused by blockage in a blood vessel) in the past year Would you like to participate in a esearch study ar What is the purpose of the study The purpose of the study is to learn more about early stroke which is the time from when you first noticed your symptoms until you were admitted to the emergency room hat would I have to do You will be interviewed on two occasions by a nurse ou will be askWY ed to tell the story of your stroke ill I be paid You will receive a gift card to a national chain store to thank you for our time Wy

If you would like more information about the Woman and Stroke Research Stu Call Claudia Beal 254‐751‐0346 or 254‐855‐1621

dy

269

Media Advertisement

Women and Stroke Study Volunteers are needed for a research study on women and stroke symptoms If you are a woman age 21 and older who had a stroke in the past year and are willing to talk about your experiences with a nurseshyresearcher please

call Claudia Beal at 751shy0346 or 855shy1621

Participants will be reimbursed for their time

270

Letter to Potential Participants

My name is Claudia Beal I am a graduate student at The University of Texas at Austin School of Nursing I am conducting a study to learn more about womenrsquos experiences of stroke I am interested in understanding how women experience the symptoms of stroke and their thoughts feelings and actions during the time from when they first noticed symptoms until they were admitted to the emergency epartment I hope that the knowledge gained from this study will be useful to ddoctors and nurses who provide medical care to women with stroke Participating in the study will require that you be interviewed by me on two occasions These interviews can take place in your home or at a public place wherever you are most comfortable During the interviews I will ask you to tell the tory of your stroke from the time you first noticed that something was happening suntil you were admitted to the emergency department This study will include only women who had an ischemic stroke (stroke caused by a blockage in a blood vessel) within the past year It will not include women who had a hemorrhagic stroke (stroke due to bleeding in the brain) If you are nterested in participating in the study but are not sure which type of stroke you ihad a form sent to your physician will verify the type of stroke you had If you participate in the study you will receive a gift card to a national chain store n the amount of $15 for the first interview and $10 for the second interview to ithank you for your time If you are interested in sharing the story of your stroke with me andor have questions about participating in the study please return the postage‐paid reply ard included with this letter so that I may contact you If you would prefer you ay call me at 254‐751‐0346 (home) or 254‐855‐1621 (cell)

c

271

m

Thank you Claudia C Beal Reply Card Enclosed with Letter to Potential Participants

interested in learning more Yes I am Name

Address Phone

272

Phone Script ay I first tell you about the study and then I will answers all the questions you M

may have about taking part in the study My name is Claudia Beal I am a graduate student at The University of Texas at Austin School of Nursing Irsquom doing a research project on womenrsquos experience of early stroke ndash which is the time from when a women first notices symptoms until she is admitted to the emergency department for her stroke I am interested in earning more about the symptoms women had and their thoughts feeling and lactions during this period of time If you agree to be in the study I will interview you on two occasions I will ask you to tell me the story of your stroke from the moment you first noticed symptoms until you were admitted to the emergency department Each interview will take about an hour to an hour‐and‐a half depending on how much you would like to tell e I can interview you in your home or a public place where there is privacy for m

us to talk will audio record the interviews I will protect the confidentiality of these

me Irecordings and any written report of the interviews will not have your na Women who participant in the study will receive $15 in the form of a gift ertificate to a national chain store for the first interview and a $10 gift certificate cfor the second interview Do you have any questions I can answer about the study Irsquod like to ask you a few questions to see if you are eligible for the study Are you age 21 or older When did you have your stroke Do you know what kind of stroke you had There a several types of stroke One is called a hemorrhagic stroke and is caused by bleeding the brain The other is called an ischemic stroke and is cause by a blood clot in a blood vessel in the brain If you would like to take part in the study ut are not sure which type of stroke you had I can get your written permission to end a form to your doctor or nurse practitioner to find out bs

273

Authorization for the Use and Disclosure of Protected Health Information

1 I hereby authorize Claudia C Beal MN RN a doctoral candidate at the University of Texas at Austin School of Nursing to contact my physiciannurse practitioner to verify that I was diagnosed with an ischemic stroke

Participantrsquos Name

Date of Birth _________________________________

2 I understand that this form will be faxed andor mailed to my physiciannurse practitioner for hisher confirmation that I had an ischemic stroke

3 I understand that to the extent any Recipient of this information as identified above is not a ldquocovered entityrdquo under Federal or Texas medical privacy law the information may no longer be protected by Federal and Texas medical privacy law once it is disclosed to the Recipient If the Recipient of the disclosed information is not an entity subject to Federal or

n yTexas medical privacy law the Recipie t is not prohibited b those laws from re‐disclosing the information

4 I understand that this Authorization is valid until the end of the research study unless I notify the School of Nursing otherwise I understand that The University of Texas at Austin will not receive compensation for its use or disclosure of this information I may revoke this Authorization in writing at any time except to the extent that the School of Nursing has already relied on this Authorization I may revoke it by mailing a written notice to Claudia Beal MN RN at 5108 Lake Jackson Drive Waco Texas 76710 stating my intent to revoke this Authorization I understand that I may refuse to sign this Authorization and that my refusal will not influence my current or future relationships with The University of Texas or my physiciannurse practitioner

Signature of Participant or Legal Representative __________________________

______ Printed Name of Participant or Legal Representative _________________

Representativersquos Authority to Act ______________________________________

274

Confirmation of Diagnosis

Dear Ms Beal

verify that ____________________________ was diagnosed with an ischemic stroke in I(monthyear) _____________________________

te__________________________________ _____________________________________ MDNP Da omments (please use additional sheets if needed) C

Please mail this form to Claudia Beal in the attached postage‐paid envelope Thank ou y

275

The University of T1700 Red River StrAustin TX 78701

276

Letter to Physicians for Verification of Is ke chemic Stro

Date

dress Physician Ad Dear Dr One of your patients [Participant Name] is planning to participate in a research study being conducted by Claudia C Beal MN RN who is a doctoral candidate at The University of Texas at Austin School of Nursing The purpose of the study is to gain greater understanding of womenrsquos early symptom experience of ischemic stroke including the timing of the decision to seek medical assistance for ymptoms [Patient Name] gave permission for me to notify you of her

sparticipation in the study so that you could verify her diagnosis of ischemic stroke The study only includes women with ischemic stroke Participants in the study will be interviewed about their stroke symptoms and their thoughts feelings and actions in response to symptoms In order for [Patient Name] to participate in the project I need to verify that she had an ischemic stroke She has authorized me to contact you for this information Please sign and date one copy of the enclosed orm and return it to me in the postage‐paid envelope There is space on the form ffor you to note any comments regarding your patient if you would like to do so f you have any questions or concerns about the project please feel free to contact

621 Ime at (W) 254‐710‐2229 or (C) 254‐855‐1

very much for your assistance Thank you Sincerely

RN laudia C Beal MNCDoctoral Candidate Alexa Stuifbergen PhD RN FAAN Dean ad interim aura Lee Blanton Chair in Nursing

ng LJames R Dougherty Jr Centennial Professor in Nursi

at Austin School of Nursing

exaseet

IRS APPROVED ON 021052009 EXPIRES ON 021042010

INFORMED CONSENT TO PARTICIPATE IN RESEARCH School of Nursing

You are being asked to participate in a research study This form provides you with information about the study The Principal Investigator (PI) (the person in charge of this study) will describe the study to you and answer all of your questions Please read the information below and ask any questions you have about this material Your participation in this study is voluntary You can refuse to participate without penalty or loss of benefits to which you are otherwise entitled You can withdraw from the study at any time without penalty or less of benefits to which you are other wise entitled

Title of Research Study Womens Early Symptom Experience of Ischemic Stroke A Narrative Study IRB 2008-12-0042

Principal Investigator Claudia C Beal MN RN CNM Doctoral Candidate The University of Texas at Austin School of Nursing 1700 Red River Austin TX 78701 254-751-0346 (home phone) 254-710-2229 (office phone) 254-855-1621 (cellular phone)

What is the purpose of this study The purpose of this study is to gain understanding of womens early symptom experience of ischemic stroke (the time from when a woman first notices symptoms until the time she is admitted to the emergency department)

What will be done if you take part in this study If you agree to take part in this study you will be asked to complete one form with questions about your background such as marital status and age and questions about your stroke including what symptoms you noticed and where you were when your symptoms began You also will be interviewed by the Pion two occasions about how your body felt to you during your stroke and your thoughts feelings emotions and actions from the time you first noticed symptoms until you were admitted to the emergency department If you agree to participate you will be one of 10 women who will be interviewed The interviews will take place within about 2 to 6 weeks of one another Each interview will take about 1 hour but may take up to 2 hours depending upon how much information you would like to share The interviews will be audio-recorded and the interviewer will make brief written notes about your responses

Claudia_Beal

Text Box

277

EXPIRES ON 021042010 IRB APPROVED ON 0210512009

What are the possible discomforts and risks There arc no major risks to this study There is the possibility that some of the questions may cause you to recall events that will cause emotional distress You need not answer any questions that you wish to avoid If you feel that you need help after the interview dealing with any issues I will tell you about places you can contact for help

What if you become inju red while participating in this study While the risk of injury is very low no treatment will be provided for research-related injury and no payment will be made in the event of a medical or psychological problem

What are the possible benefits to you or others There are no individual benefits for participating in this study Some participants may receive psychological benefit from talking about life events In addition the knowledge gained from this study may assist doctors and nurses to provide medical care for women with stroke

Will I receive monetary compensation for participating in this study You will receive a gift card to a national chain store in the amount of $15 for the first interview and $10 for the second interview

How will the confidentiality of your research records be protected The data collected in this study will consist of a background information form and audioshyrecordings of your interviews The recordings will be typed into a written document (called a transcription) that outlines what you said in your exact words The audioshyrecordings and transcriptions will be stored on the personal computer of the PI and the computer file in which these records are contained will be password locked A false name will be used on the computer file of the audio-recording transcriptions and background information form A paper copy of the transcription and the background information forms will be kept in a locked file drawer to which only the PI has access Your personal information (name phone number address) will be kept in a safe place Your actual name will never appear on the data or be used in anything written about the study Three years after competition of the study the digital recording of the interviews will be deleted from the home computer and your personal information will be destroyed

Authorized persons from the University of Texas at Austin and the Institutional Review Board for the Protection of Human Subjects have a legal right to review your research records and will protect the confidentiality of those records to the extent permitted by law If the research project is sponsored by an organization the sponsor also has the legal right to review your research records Otherwise your research records will not be released without your consent unless required by law or a court order If the results of this research study are published or presented at scientific meetings your identity will not be disclosed

Who can you contact if you have question about your rights as a research subject If you have questions about your rights as a research participant complaints concerns or questions about the research please contact Jody L Jensen PhD Chair The University of

Claudia_Beal

Text Box

278

--------------

Texas at Austin Institutional Review Board for the Protection of Human Subjects at 512shy232-2685 or email orsc((l)utsccutexasedu

cgt

Signatures As a representative of this study I have explained the purpose procedures and benefits and risks that are involved in this research study

Signature of person obtaining consent _

Printed name of person obtaining consent _

Date

You have been informed about this studys purpose procedures possible benefits and risks and you have received a copy of this form You have been given the opportunity to ask questions before you sign and you have been told that you can ask other questions at any time You voluntarily agree to participate in this study By signing this form you are not waiving any of your legal rights

Signature of participant _

Printed name of participant _

Date

Claudia_Beal

Text Box

279

Appendix B Data Collection Materials

280

Background Information Form

1 Current Age _________ 2 Age at the time of this stroke _________

for this stroke __________ 3 Date admitted to the emergency room

ipantrsquos first stroke 4 Was this the partic Yes _____ No _____

us stroke__________ Year of previo 5 Marital status

Married Separated Divorced Widowed Never Married 6 Any children Yes _____ No _____

If yes how many ______ child ______

If yes age of youngest 7 Highest level of education

ma GED Some college Bachelorrsquos High School Diplo Graduate Degree

Wor e at the time of this stroke 8 k outside the hom

Yes _____ No _____

If yes how many hours per week ________ If yes what type of work _____________________

Now working outside the home Yes _____ No ______

281

9

10 Ethnicity ____________________________________

rs 11 Prior Medical History and Stroke Risk Facto Heart Disease ____________________________________ Hypertension _____________________________________ Diabetes ___________________________________________ Oral Contraception ________________________________ HRT ________________________________________________ moking ___________________________________________

___________________ SOther ____________________________ 11 First symptom(s) noticed

Weakness in arm ______ Weakness in leg ______ Weakness in face ______ Difficulty with speech ______

ion _______ Problems with visProblem

Numbns with balance or dizziness ______ ss _______

_ eWhich part of the body ____________

Other symptoms __________________________________ _______________________________________________________ _______________________________________________________ 12 Add iced prior to hospital arrival itional symptom(s) not

Weakness in arm ______ Weakness in leg ______ Weakness in face ______ Difficulty with speech _______

sion _______ Problems with viProblemNumbn

s with balance or dizziness _______ ss ______

eWhich part of body ________________

Other symptoms __________________________________

______________________________________________________

282

_

13 Location when first noticed symptoms

Home _____ Work _____ Other place ________________

symptoms was anyone else present 14 When first noticed Yes _____ No _____ If yes who was present _________________________

ll that person about your symptoms

Did participant te

Yes_____ No _____

tice symptoms without participant telling them

Did that person no Yes _____ No _____

else about symptoms 15 Did participant tell anyone

Yes _____ No _____

If yes who ________________________________ 16 Tim s until emergency department arrival e from first noticing symptom

Less than 1hour ______ Between 1 and 2 hours ______ Between 2 and 3 hours ______

_ ___

Between 3 and 6 hours _____Between 6 and 12 hours ___

_ More than 12 hours ______ 17 Transportation to hospital

______ Ambulance ______

some one else _ortation _______

Private car driven byTaxi or public transp

f _______ Drove mysel 8 Received t‐PA Yes _____ No _____ Not Sure _____

283

1

19 Post stroke symptomslimitations _________ Difficulty with my vision

Difficulty using hands or arms ________ Difficulty walking_______

y ________

Problems with balance or dizziness ________ od _

Numbness or lack of feeling in a part of bls ________d ________

Problems with bladder or boweProblems thinking or using minDifficulty with speech _________

284

285

Interview Schedule

First Interview The introductory questionstatement is

I am interested in hearing the story of your stroke from the time you first oticed that something was happening until you were admitted to the

ent Could you tell me about that experience nemergency departm

Possibl e other questions

I am interested in how you experienced your body during the stroke from the time you first noticed symptoms until you were admitted to the emergency department Could you describe how your body felt

ticed What were your emotions during the time from when you first no

symptoms until you were admitted to the emergency department What did you think might be happening to you during this time

ou tell me about any people who you were with or who you talked is period of time

Could yto during th

econd S

Interview

Last week you told me the story of your stroke from the time you first noticed symptoms until you were admitted to the emergency department Since we last spoke have you had any other thoughts you wanted to share about that experience

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VITA

Claudia Calle Beal was born in New York City and grew up on Stamford

Connecticut She received the degrees of Bachelor of Science in Nursing from

Columbia University and Master of Nursing from Emory University She was

certified as a nurse‐midwife by the American College of Nurse Midwives in 1980

and practiced as a nurse‐midwife in Philadelphia Pennsylvania from 1980 to 1983

After moving to Waco Texas in 1983 she held several advanced nursing practice

and administrative positions including Director of Public Health Nursing for the

Waco McLennan County Public Health District Since 2001 Claudia has been

affiliated with Baylor University Louise Herrington School of Nursing first as a

part‐time lecturer and then as a full‐time lecturer She presently teaches in the

graduate program of the Louise Herrington School of Nursing While a doctoral

student at The University of Texas at Austin School of Nursing Claudia authored or

co‐authored eight peer reviewed publications on various aspects of chronic illness

nd disability a

ive Waco Texas 76710 Permanent Address 5108 Lake Jackson Dr

The manuscript was typed by the author

309

etd
prelimPAGES
F_Chapter1 _Beal
F_Chapter2_Beal
F_Chapter3_Beal
F_Chapter4 _Beal
F_Chapter5_Beal
F_Chapter6_Beal
title_Appendix A
IRBAPP_Formatted
AppendixA
InfCnt_formatted
F_Appendix B
F_Reflist
F_VITA

Page 2: Copyright by Claudia Calle Beal...the dean of Baylor University, Louise Herrington School of Nursing (LHSON), for a pre‐nursing seminar entitled ... And finally, I thank my husband,

The Dissertation Committee for Claudia Calle Beal certifies that this is the approved version of the following dissertation

A NARRATIVE STUDY

Committee

____________________________________________ Alexa Stuifbergen Supervisor ____________________________________________ Heather Becker ____________________________________________ Tracie Harrison ____________________________________________ James Pennebaker ____________________________________________

Deborah Volker

A Narrative Study

by

Dissertation

for the Degree of

May 2010

Dedication

of Nursing

v

vi

vii

A NARRATIVE STUDY

The U 010

viii

ix

Table of Contents

xList of Tables ii

Chapte

Study Purpose 3

Definitions 4

Background 6

Assumptions 20

Chapte

Overvie

Summary 28

Sympto o

ms of Str ke 29

Summary 36

Theore

Summary 43

Phenom

Summary 47

x

Summary 53

Studies

Summary 64

Chapte

r 3 Methodology 66

Philosophy 66

Method

s 70

Particip

Sample Selection 70

Sample Size 72

Recruitment 78

Human Subjects 80

Data M

anagement 82

Data Collection 82

Data Handing 86

Data An

alysis 87

Bias Reduction 97

Trustworthiness 98

xi

Chapte

Teresa 105

Maria 114

Tiffany 125

Lisa 135

Kenzie 144

Ellen 155

Louise 164

Natalie 170

Jane 185

Chapte

Sympto

m Perception 192

Sympto

The Ina

xii

Sympto

ms Evaluation 206

The Sea

Sympto

m Response 222

Behavi

oral Response 227

245

xiii

Summary 245

Discussion 249

Recom

mendations 256

Conclusion 263

Append

Reply Card 272

References 286

xiv

Vita 309

xv

xvi

List of Tables

1

2

Study Purpose

were addressed

3

Definitions

)

4

symptoms

acute symptoms

(Verbrugge 1985)

5

Background

called apoplexy

th

6

7

Adams 2009)

Reed et al 2001)

8

9

10

11

12

13

(Leder 1990)

14

15

16

1962 p 95)

17

(Toombs 1993)

1985)

18

19

bodies were lived

Assumptions

20

understanding

(Ricoeur 1979)

Acknowledging Bias

21

status

22

23

24

25

26

et al 2003)

27

Summary

28

Symptoms of Stroke

29

thalamus

30

31

T able 1

)

Middle cerebral

Anterior cerebral

loss Amnesia

Vertebral posterior

r

or

inferior cerebella

32

Morgensterin 2006)

33

34

symptom

35

T able 2

e Sym

AuthorCountry

N ( Fee T

505(45) ) I (100

2 stroke scales

4499(50) I(60)

H(12)

Garg200

ano et al 9

US

1922(54) I(67) TIA(23)

H(10)

3323(46) I(78)

H(19)

Labic2002

he et al

US

1124(58) I(65) TIA(22) H(87)

Interview

461(49) 0) ITIA(10

474(47) I(85) H(15)

1581(48) I(100)

Stuar2009S

36

Summary

37

38

Leventhal 1993)

39

onersquos health

40

41

42

Summary

43

Haringland 2006)

44

45

46

symptoms

Summary

47

48

49

50

51

onset

52

Summary

53

54

55

Yu et al 2002)

56

57

McCullough 2009)

issue

58

Social factors

59

60

EMS

n Country

Desig

Prospective

61

Agyeman et al 2006

d Switzerlan

N = 648 827 IS

35(38)

M 62plusmn132Female

LSS 1st stroke

N = 150 75 IS M 70plusmn13

62

States

2003United

N = 64 IS M 70

Female 33(52)

CDC

2007 United States

registry

time

Caset1999

ta et al

Italy

12) M71plusmn065

le 91(Fema

Chang et al 2004

Taiwan

N = 196 IS

0(408) M 65

8Female

Age 65 + LSS

Derex e2002

t al

France

N = 166 84 IS

9(42)

N = 363 75 IS M 70(119)F

M (55)

M65(128) 0Female 20

Goldstein et

LSS

Iguchi 2006

et al

Japan

N = 130 82 IS

376) M 68

9(Female 4

Jorgensen al 1996

et

Denmark

) M74

(53Female 564

LSS Living alone

Kimura2004

et al

Japan

126(38) Female 6

speech dmotor w

No EMS

63

Kothari et al 1999

tes United Sta

N = 151 92 IS

IS M

Female 292(53)

Menon et al 1998

United States

Female 31(54)

M65plusmn151Female

Palomeal 200

ras et 8

Spain

N = 292 77 IS

17 (49)

N = 147 4 (33)

Absence of aphasia

Rosamond et al

s 1998 United State

(56) Female 85

blem identified pro

Turan et al

s 2005 United State

N = 409 IS

(56) M 69

le 229 Fema

LSS No EMS

Smith et al

1998 United States

N = 1895 IS

0 (47) M 66 Female 89

Wester e1999

t al

Sweden

N = 329 765 IS

38 (42) M 73 Female 1

onset Danyone

N = 67 96 IS M 64 Female 28(41)

No EMS

Williams et al2000

tates

United S

N = 87 IS M 68

6 (52) Female 4

N = 259 63 IS

1(43)

N = 38 IS M 62

(68) Female 26

p

64

Summary

65

education efforts

Philosophy

66

67

68

69

Methods

Sample selection

70

71

Sample size

72

73

74

75

Table 4

A nicity Name ge

ne

ke Hypertension

Hypertension

All nam

76

es are pseudonyms

Table 5

t ‐Name Ellen

77

Pr

Dizzy

PA

no Symptoms

die

Vertigo

Tiredness

nceng

7 days no

y

^ L arm weak

2 hours no

l confusion ^

6 days no

Teresa Dizzy

yes

78

Recruitment

79

Human subjects

80

Appendix A

81

the study

Data management

Data collection

82

(Johnson 2002)

83

Appendix B

84

85

amp Field 1995)

Data handling

86

Data analysis

203)

87

88

89

(Ricoeur 1979 p28)

90

91

width of the paper

actions

92

(p 59)

93

94

for discussion

95

96

literature

Bias Reduction

97

Trustworthiness

98

99

100

101

102

103

own time

1995)

104

Teresa

105

thenrdquo

106

the rea

107

would be all right

she sai

108

into her story

only upon herself

109

110

dayrdquo she said

wake her

111

otherwise

112

113

Maria

114

stroke

115

tournament

116

her husband

117

said

118

119

120

121

122

123

124

Tiffany

125

126

yourdquo

127

128

129

otherrdquo she said

130

couldnrsquotrdquo

131

of her s

132

133

134

long

135

136

137

she said

138

not by feelingrdquo

139

140

141

142

for her feelings

143

Kenzie

144

145

Wednesday

parents

146

on Wednesday

147

considerable pain

148

keeping her upright

149

home

some soup

150

151

on the phone

152

saying

hospital

153

that wayrdquo

154

Ellen

155

156

on her brain

157

158

differentrdquo

159

160

161

162

163

Louise

presence intrusive

164

165

didrdquo

166

167

168

symptoms

169

Natalie

170

herself

171

172

an employee

173

like to

174

symptoms to go away

175

176

177

178

179

180

back strongrdquo

181

182

bi

her symptoms

183

184

long

185

186

187

188

189

190

191

on Page 236

Symptom Perception

192

from the self

193

194

195

The strange body

196

197

198

199

200

malfunctioning

201

great to overcome

202

Losing bodyshysense

203

action

204

stroke

205

Symptom Evaluation

206

207

Memories of illness

208

motherrsquos stroke

209

210

211

212

213

214

215

a medical problem

216

217

218

219

What sick means

symptoms lasted

220

idea of sick

221

Symptom Response

discussed

Selfshybody talk

222

223

Emotional response

224

home

225

226

Behavioral response

227

228

stroke

229

to that realization

230

231

232

bad enough to do so

233

234

health conditions

235

236

making

stroke

P

237

Similarities

erception

Difficulty

y

Evaluation

Response

y Talk Describing

QualitEssential

T

Mind BSepara

hellip

of Symptoms

M

emories of illness

odily Familiar B

Self‐Bod hellip

B hellip

Ways

Heightened Aw f

areness o the Body

Loss of

Body Sense

Symptoms

Seriousn

ess of Symptoms

Body hellip

Culture

Social roles hellip

hellip Self Image

hellip Religion

238

during this time

sense of the body

239

240

241

assistance

242

informed action

243

244

their identity

Summary

245

246

247

248

Discussion

US wit

249

experience

250

251

252

253

254

world

255

Recommendations

256

257

258

259

education campaigns

260

consultation

261

262

Conclusion

263

264

265

FWA 00002030

Date 0210509

Dear Claudia C Beal

Claudia_Beal

Text Box

266

Claudia_Beal

Text Box

267

Sincerely

Claudia_Beal

Text Box

268

Recruitment Flier

dy

269

Media Advertisement

270

c

271

m

Address Phone

272

273

Date of Birth _________________________________

274

Dear Ms Beal

275

276

Date

621 Ime at (W) 254‐710‐2229 or (C) 254‐855‐1

exaseet

Claudia_Beal

Text Box

277

Claudia_Beal

Text Box

278

--------------

cgt

Date

Claudia_Beal

Text Box

279

280

Yes _____ No _____

281

9

10 Ethnicity ____________________________________

Other symptoms __________________________________

______________________________________________________

282

_

Did participant te

Yes_____ No _____

Yes _____ No _____

_ ___

______ Ambulance ______

283

1

y ________

284

285

Interview Schedule

Could yto during th

econd S

Interview

References

286

doi10116101STR000001502852771D1

) My stroke of ins

287

288

289

290

291

71087

84

00003164967828247 10109701PHH

292

399‐407

293

attack Neurology 62

294

Publications Inc

295

12(3) 119‐126 doi101016S1052‐3057(03)00042‐9

296

181 doi10108007399330500457887

em2002128682 doi101067m

297

298

doi10116101STR00002172006116739

299

300

301

302

303

304

305

732304263658 doi1011771048

306

307

308

VITA

nd disability a

309

etd
prelimPAGES
F_Chapter1 _Beal
F_Chapter2_Beal
F_Chapter3_Beal
F_Chapter4 _Beal
F_Chapter5_Beal
F_Chapter6_Beal
title_Appendix A
IRBAPP_Formatted
AppendixA
InfCnt_formatted
F_Appendix B
F_Reflist
F_VITA

Page 3: Copyright by Claudia Calle Beal...the dean of Baylor University, Louise Herrington School of Nursing (LHSON), for a pre‐nursing seminar entitled ... And finally, I thank my husband,

A Narrative Study

by

Dissertation

for the Degree of

May 2010

Dedication

of Nursing

v

vi

vii

A NARRATIVE STUDY

The U 010

viii

ix

Table of Contents

xList of Tables ii

Chapte

Study Purpose 3

Definitions 4

Background 6

Assumptions 20

Chapte

Overvie

Summary 28

Sympto o

ms of Str ke 29

Summary 36

Theore

Summary 43

Phenom

Summary 47

x

Summary 53

Studies

Summary 64

Chapte

r 3 Methodology 66

Philosophy 66

Method

s 70

Particip

Sample Selection 70

Sample Size 72

Recruitment 78

Human Subjects 80

Data M

anagement 82

Data Collection 82

Data Handing 86

Data An

alysis 87

Bias Reduction 97

Trustworthiness 98

xi

Chapte

Teresa 105

Maria 114

Tiffany 125

Lisa 135

Kenzie 144

Ellen 155

Louise 164

Natalie 170

Jane 185

Chapte

Sympto

m Perception 192

Sympto

The Ina

xii

Sympto

ms Evaluation 206

The Sea

Sympto

m Response 222

Behavi

oral Response 227

245

xiii

Summary 245

Discussion 249

Recom

mendations 256

Conclusion 263

Append

Reply Card 272

References 286

xiv

Vita 309

xv

xvi

List of Tables

1

2

Study Purpose

were addressed

3

Definitions

)

4

symptoms

acute symptoms

(Verbrugge 1985)

5

Background

called apoplexy

th

6

7

Adams 2009)

Reed et al 2001)

8

9

10

11

12

13

(Leder 1990)

14

15

16

1962 p 95)

17

(Toombs 1993)

1985)

18

19

bodies were lived

Assumptions

20

understanding

(Ricoeur 1979)

Acknowledging Bias

21

status

22

23

24

25

26

et al 2003)

27

Summary

28

Symptoms of Stroke

29

thalamus

30

31

T able 1

)

Middle cerebral

Anterior cerebral

loss Amnesia

Vertebral posterior

r

or

inferior cerebella

32

Morgensterin 2006)

33

34

symptom

35

T able 2

e Sym

AuthorCountry

N ( Fee T

505(45) ) I (100

2 stroke scales

4499(50) I(60)

H(12)

Garg200

ano et al 9

US

1922(54) I(67) TIA(23)

H(10)

3323(46) I(78)

H(19)

Labic2002

he et al

US

1124(58) I(65) TIA(22) H(87)

Interview

461(49) 0) ITIA(10

474(47) I(85) H(15)

1581(48) I(100)

Stuar2009S

36

Summary

37

38

Leventhal 1993)

39

onersquos health

40

41

42

Summary

43

Haringland 2006)

44

45

46

symptoms

Summary

47

48

49

50

51

onset

52

Summary

53

54

55

Yu et al 2002)

56

57

McCullough 2009)

issue

58

Social factors

59

60

EMS

n Country

Desig

Prospective

61

Agyeman et al 2006

d Switzerlan

N = 648 827 IS

35(38)

M 62plusmn132Female

LSS 1st stroke

N = 150 75 IS M 70plusmn13

62

States

2003United

N = 64 IS M 70

Female 33(52)

CDC

2007 United States

registry

time

Caset1999

ta et al

Italy

12) M71plusmn065

le 91(Fema

Chang et al 2004

Taiwan

N = 196 IS

0(408) M 65

8Female

Age 65 + LSS

Derex e2002

t al

France

N = 166 84 IS

9(42)

N = 363 75 IS M 70(119)F

M (55)

M65(128) 0Female 20

Goldstein et

LSS

Iguchi 2006

et al

Japan

N = 130 82 IS

376) M 68

9(Female 4

Jorgensen al 1996

et

Denmark

) M74

(53Female 564

LSS Living alone

Kimura2004

et al

Japan

126(38) Female 6

speech dmotor w

No EMS

63

Kothari et al 1999

tes United Sta

N = 151 92 IS

IS M

Female 292(53)

Menon et al 1998

United States

Female 31(54)

M65plusmn151Female

Palomeal 200

ras et 8

Spain

N = 292 77 IS

17 (49)

N = 147 4 (33)

Absence of aphasia

Rosamond et al

s 1998 United State

(56) Female 85

blem identified pro

Turan et al

s 2005 United State

N = 409 IS

(56) M 69

le 229 Fema

LSS No EMS

Smith et al

1998 United States

N = 1895 IS

0 (47) M 66 Female 89

Wester e1999

t al

Sweden

N = 329 765 IS

38 (42) M 73 Female 1

onset Danyone

N = 67 96 IS M 64 Female 28(41)

No EMS

Williams et al2000

tates

United S

N = 87 IS M 68

6 (52) Female 4

N = 259 63 IS

1(43)

N = 38 IS M 62

(68) Female 26

p

64

Summary

65

education efforts

Philosophy

66

67

68

69

Methods

Sample selection

70

71

Sample size

72

73

74

75

Table 4

A nicity Name ge

ne

ke Hypertension

Hypertension

All nam

76

es are pseudonyms

Table 5

t ‐Name Ellen

77

Pr

Dizzy

PA

no Symptoms

die

Vertigo

Tiredness

nceng

7 days no

y

^ L arm weak

2 hours no

l confusion ^

6 days no

Teresa Dizzy

yes

78

Recruitment

79

Human subjects

80

Appendix A

81

the study

Data management

Data collection

82

(Johnson 2002)

83

Appendix B

84

85

amp Field 1995)

Data handling

86

Data analysis

203)

87

88

89

(Ricoeur 1979 p28)

90

91

width of the paper

actions

92

(p 59)

93

94

for discussion

95

96

literature

Bias Reduction

97

Trustworthiness

98

99

100

101

102

103

own time

1995)

104

Teresa

105

thenrdquo

106

the rea

107

would be all right

she sai

108

into her story

only upon herself

109

110

dayrdquo she said

wake her

111

otherwise

112

113

Maria

114

stroke

115

tournament

116

her husband

117

said

118

119

120

121

122

123

124

Tiffany

125

126

yourdquo

127

128

129

otherrdquo she said

130

couldnrsquotrdquo

131

of her s

132

133

134

long

135

136

137

she said

138

not by feelingrdquo

139

140

141

142

for her feelings

143

Kenzie

144

145

Wednesday

parents

146

on Wednesday

147

considerable pain

148

keeping her upright

149

home

some soup

150

151

on the phone

152

saying

hospital

153

that wayrdquo

154

Ellen

155

156

on her brain

157

158

differentrdquo

159

160

161

162

163

Louise

presence intrusive

164

165

didrdquo

166

167

168

symptoms

169

Natalie

170

herself

171

172

an employee

173

like to

174

symptoms to go away

175

176

177

178

179

180

back strongrdquo

181

182

bi

her symptoms

183

184

long

185

186

187

188

189

190

191

on Page 236

Symptom Perception

192

from the self

193

194

195

The strange body

196

197

198

199

200

malfunctioning

201

great to overcome

202

Losing bodyshysense

203

action

204

stroke

205

Symptom Evaluation

206

207

Memories of illness

208

motherrsquos stroke

209

210

211

212

213

214

215

a medical problem

216

217

218

219

What sick means

symptoms lasted

220

idea of sick

221

Symptom Response

discussed

Selfshybody talk

222

223

Emotional response

224

home

225

226

Behavioral response

227

228

stroke

229

to that realization

230

231

232

bad enough to do so

233

234

health conditions

235

236

making

stroke

P

237

Similarities

erception

Difficulty

y

Evaluation

Response

y Talk Describing

QualitEssential

T

Mind BSepara

hellip

of Symptoms

M

emories of illness

odily Familiar B

Self‐Bod hellip

B hellip

Ways

Heightened Aw f

areness o the Body

Loss of

Body Sense

Symptoms

Seriousn

ess of Symptoms

Body hellip

Culture

Social roles hellip

hellip Self Image

hellip Religion

238

during this time

sense of the body

239

240

241

assistance

242

informed action

243

244

their identity

Summary

245

246

247

248

Discussion

US wit

249

experience

250

251

252

253

254

world

255

Recommendations

256

257

258

259

education campaigns

260

consultation

261

262

Conclusion

263

264

265

FWA 00002030

Date 0210509

Dear Claudia C Beal

Claudia_Beal

Text Box

266

Claudia_Beal

Text Box

267

Sincerely

Claudia_Beal

Text Box

268

Recruitment Flier

dy

269

Media Advertisement

270

c

271

m

Address Phone

272

273

Date of Birth _________________________________

274

Dear Ms Beal

275

276

Date

621 Ime at (W) 254‐710‐2229 or (C) 254‐855‐1

exaseet

Claudia_Beal

Text Box

277

Claudia_Beal

Text Box

278

--------------

cgt

Date

Claudia_Beal

Text Box

279

280

Yes _____ No _____

281

9

10 Ethnicity ____________________________________

Other symptoms __________________________________

______________________________________________________

282

_

Did participant te

Yes_____ No _____

Yes _____ No _____

_ ___

______ Ambulance ______

283

1

y ________

284

285

Interview Schedule

Could yto during th

econd S

Interview

References

286

doi10116101STR000001502852771D1

) My stroke of ins

287

288

289

290

291

71087

84

00003164967828247 10109701PHH

292

399‐407

293

attack Neurology 62

294

Publications Inc

295

12(3) 119‐126 doi101016S1052‐3057(03)00042‐9

296

181 doi10108007399330500457887

em2002128682 doi101067m

297

298

doi10116101STR00002172006116739

299

300

301

302

303

304

305

732304263658 doi1011771048

306

307

308

VITA

nd disability a

309

etd
prelimPAGES
F_Chapter1 _Beal
F_Chapter2_Beal
F_Chapter3_Beal
F_Chapter4 _Beal
F_Chapter5_Beal
F_Chapter6_Beal
title_Appendix A
IRBAPP_Formatted
AppendixA
InfCnt_formatted
F_Appendix B
F_Reflist
F_VITA

Dedication

of Nursing

v

vi

vii

A NARRATIVE STUDY

The U 010

viii

ix

Table of Contents

xList of Tables ii

Chapte

Study Purpose 3

Definitions 4

Background 6

Assumptions 20

Chapte

Overvie

Summary 28

Sympto o

ms of Str ke 29

Summary 36

Theore

Summary 43

Phenom

Summary 47

x

Summary 53

Studies

Summary 64

Chapte

r 3 Methodology 66

Philosophy 66

Method

s 70

Particip

Sample Selection 70

Sample Size 72

Recruitment 78

Human Subjects 80

Data M

anagement 82

Data Collection 82

Data Handing 86

Data An

alysis 87

Bias Reduction 97

Trustworthiness 98

xi

Chapte

Teresa 105

Maria 114

Tiffany 125

Lisa 135

Kenzie 144

Ellen 155

Louise 164

Natalie 170

Jane 185

Chapte

Sympto

m Perception 192

Sympto

The Ina

xii

Sympto

ms Evaluation 206

The Sea

Sympto

m Response 222

Behavi

oral Response 227

245

xiii

Summary 245

Discussion 249

Recom

mendations 256

Conclusion 263

Append

Reply Card 272

References 286

xiv

Vita 309

xv

xvi

List of Tables

1

2

Study Purpose

were addressed

3

Definitions

)

4

symptoms

acute symptoms

(Verbrugge 1985)

5

Background

called apoplexy

th

6

7

Adams 2009)

Reed et al 2001)

8

9

10

11

12

13

(Leder 1990)

14

15

16

1962 p 95)

17

(Toombs 1993)

1985)

18

19

bodies were lived

Assumptions

20

understanding

(Ricoeur 1979)

Acknowledging Bias

21

status

22

23

24

25

26

et al 2003)

27

Summary

28

Symptoms of Stroke

29

thalamus

30

31

T able 1

)

Middle cerebral

Anterior cerebral

loss Amnesia

Vertebral posterior

r

or

inferior cerebella

32

Morgensterin 2006)

33

34

symptom

35

T able 2

e Sym

AuthorCountry

N ( Fee T

505(45) ) I (100

2 stroke scales

4499(50) I(60)

H(12)

Garg200

ano et al 9

US

1922(54) I(67) TIA(23)

H(10)

3323(46) I(78)

H(19)

Labic2002

he et al

US

1124(58) I(65) TIA(22) H(87)

Interview

461(49) 0) ITIA(10

474(47) I(85) H(15)

1581(48) I(100)

Stuar2009S

36

Summary

37

38

Leventhal 1993)

39

onersquos health

40

41

42

Summary

43

Haringland 2006)

44

45

46

symptoms

Summary

47

48

49

50

51

onset

52

Summary

53

54

55

Yu et al 2002)

56

57

McCullough 2009)

issue

58

Social factors

59

60

EMS

n Country

Desig

Prospective

61

Agyeman et al 2006

d Switzerlan

N = 648 827 IS

35(38)

M 62plusmn132Female

LSS 1st stroke

N = 150 75 IS M 70plusmn13

62

States

2003United

N = 64 IS M 70

Female 33(52)

CDC

2007 United States

registry

time

Caset1999

ta et al

Italy

12) M71plusmn065

le 91(Fema

Chang et al 2004

Taiwan

N = 196 IS

0(408) M 65

8Female

Age 65 + LSS

Derex e2002

t al

France

N = 166 84 IS

9(42)

N = 363 75 IS M 70(119)F

M (55)

M65(128) 0Female 20

Goldstein et

LSS

Iguchi 2006

et al

Japan

N = 130 82 IS

376) M 68

9(Female 4

Jorgensen al 1996

et

Denmark

) M74

(53Female 564

LSS Living alone

Kimura2004

et al

Japan

126(38) Female 6

speech dmotor w

No EMS

63

Kothari et al 1999

tes United Sta

N = 151 92 IS

IS M

Female 292(53)

Menon et al 1998

United States

Female 31(54)

M65plusmn151Female

Palomeal 200

ras et 8

Spain

N = 292 77 IS

17 (49)

N = 147 4 (33)

Absence of aphasia

Rosamond et al

s 1998 United State

(56) Female 85

blem identified pro

Turan et al

s 2005 United State

N = 409 IS

(56) M 69

le 229 Fema

LSS No EMS

Smith et al

1998 United States

N = 1895 IS

0 (47) M 66 Female 89

Wester e1999

t al

Sweden

N = 329 765 IS

38 (42) M 73 Female 1

onset Danyone

N = 67 96 IS M 64 Female 28(41)

No EMS

Williams et al2000

tates

United S

N = 87 IS M 68

6 (52) Female 4

N = 259 63 IS

1(43)

N = 38 IS M 62

(68) Female 26

p

64

Summary

65

education efforts

Philosophy

66

67

68

69

Methods

Sample selection

70

71

Sample size

72

73

74

75

Table 4

A nicity Name ge

ne

ke Hypertension

Hypertension

All nam

76

es are pseudonyms

Table 5

t ‐Name Ellen

77

Pr

Dizzy

PA

no Symptoms

die

Vertigo

Tiredness

nceng

7 days no

y

^ L arm weak

2 hours no

l confusion ^

6 days no

Teresa Dizzy

yes

78

Recruitment

79

Human subjects

80

Appendix A

81

the study

Data management

Data collection

82

(Johnson 2002)

83

Appendix B

84

85

amp Field 1995)

Data handling

86

Data analysis

203)

87

88

89

(Ricoeur 1979 p28)

90

91

width of the paper

actions

92

(p 59)

93

94

for discussion

95

96

literature

Bias Reduction

97

Trustworthiness

98

99

100

101

102

103

own time

1995)

104

Teresa

105

thenrdquo

106

the rea

107

would be all right

she sai

108

into her story

only upon herself

109

110

dayrdquo she said

wake her

111

otherwise

112

113

Maria

114

stroke

115

tournament

116

her husband

117

said

118

119

120

121

122

123

124

Tiffany

125

126

yourdquo

127

128

129

otherrdquo she said

130

couldnrsquotrdquo

131

of her s

132

133

134

long

135

136

137

she said

138

not by feelingrdquo

139

140

141

142

for her feelings

143

Kenzie

144

145

Wednesday

parents

146

on Wednesday

147

considerable pain

148

keeping her upright

149

home

some soup

150

151

on the phone

152

saying

hospital

153

that wayrdquo

154

Ellen

155

156

on her brain

157

158

differentrdquo

159

160

161

162

163

Louise

presence intrusive

164

165

didrdquo

166

167

168

symptoms

169

Natalie

170

herself

171

172

an employee

173

like to

174

symptoms to go away

175

176

177

178

179

180

back strongrdquo

181

182

bi

her symptoms

183

184

long

185

186

187

188

189

190

191

on Page 236

Symptom Perception

192

from the self

193

194

195

The strange body

196

197

198

199

200

malfunctioning

201

great to overcome

202

Losing bodyshysense

203

action

204

stroke

205

Symptom Evaluation

206

207

Memories of illness

208

motherrsquos stroke

209

210

211

212

213

214

215

a medical problem

216

217

218

219

What sick means

symptoms lasted

220

idea of sick

221

Symptom Response

discussed

Selfshybody talk

222

223

Emotional response

224

home

225

226

Behavioral response

227

228

stroke

229

to that realization

230

231

232

bad enough to do so

233

234

health conditions

235

236

making

stroke

P

237

Similarities

erception

Difficulty

y

Evaluation

Response

y Talk Describing

QualitEssential

T

Mind BSepara

hellip

of Symptoms

M

emories of illness

odily Familiar B

Self‐Bod hellip

B hellip

Ways

Heightened Aw f

areness o the Body

Loss of

Body Sense

Symptoms

Seriousn

ess of Symptoms

Body hellip

Culture

Social roles hellip

hellip Self Image

hellip Religion

238

during this time

sense of the body

239

240

241

assistance

242

informed action

243

244

their identity

Summary

245

246

247

248

Discussion

US wit

249

experience

250

251

252

253

254

world

255

Recommendations

256

257

258

259

education campaigns

260

consultation

261

262

Conclusion

263

264

265

FWA 00002030

Date 0210509

Dear Claudia C Beal

Claudia_Beal

Text Box

266

Claudia_Beal

Text Box

267

Sincerely

Claudia_Beal

Text Box

268

Recruitment Flier

dy

269

Media Advertisement

270

c

271

m

Address Phone

272

273

Date of Birth _________________________________

274

Dear Ms Beal

275

276

Date

621 Ime at (W) 254‐710‐2229 or (C) 254‐855‐1

exaseet

Claudia_Beal

Text Box

277

Claudia_Beal

Text Box

278

--------------

cgt

Date

Claudia_Beal

Text Box

279

280

Yes _____ No _____

281

9

10 Ethnicity ____________________________________

Other symptoms __________________________________

______________________________________________________

282

_

Did participant te

Yes_____ No _____

Yes _____ No _____

_ ___

______ Ambulance ______

283

1

y ________

284

285

Interview Schedule

Could yto during th

econd S

Interview

References

286

doi10116101STR000001502852771D1

) My stroke of ins

287

288

289

290

291

71087

84

00003164967828247 10109701PHH

292

399‐407

293

attack Neurology 62

294

Publications Inc

295

12(3) 119‐126 doi101016S1052‐3057(03)00042‐9

296

181 doi10108007399330500457887

em2002128682 doi101067m

297

298

doi10116101STR00002172006116739

299

300

301

302

303

304

305

732304263658 doi1011771048

306

307

308

VITA

nd disability a

309

etd
prelimPAGES
F_Chapter1 _Beal
F_Chapter2_Beal
F_Chapter3_Beal
F_Chapter4 _Beal
F_Chapter5_Beal
F_Chapter6_Beal
title_Appendix A
IRBAPP_Formatted
AppendixA
InfCnt_formatted
F_Appendix B
F_Reflist
F_VITA

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Copyright by Claudia Calle Beal...the dean of Baylor University, Louise Herrington School of Nursing...

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