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This is to certify that the
dissertation entitled

THE EFFECT OF A CEREBRAL VASCULAR ACCIDENT
(STROKE) ON MIDDLE-AGED COUPLES LONG-TERM
MARRIAGES

presented by

LORI RUTH STANLEY

has been accepted towards fulﬁllment
of the requirements for the

PH.D. degree in FAMILY AND CHILD
ECOLOGY

 

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THE EFFECT OF INDIVIDUAL POST-STROKE ADAPTATION ON MIDDLE-
AGED LONG-TERM MARRIED COUPLES

By

Lori Ruth Stanley

A DISSERTATION
Submitted to Michigan State University
in partial fulﬁllment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Family and Human Ecology

2005

ABSTRACT

THE EFFECT OF A CEREBROVASCULAR ACCIDENT (STROKE) ON MIDDLE-
AGED COUPLES IN LONG-TERM MARRIAGES.

By
Lori Ruth Stanley
This research study examined the inﬂuence of ecosystemic factors, social
constructionism, and sense of coherence on successﬁil post-stroke adaptation. This was a
qualitative research study and included eight post-stroke middle-aged couples in long
term marriages of which four were female stroke survivors and four were male stroke
survivors. Each participant was asked to describe their own post-stroke experiences and
perceptions. Through narrative inquiry, participants were able to explore and make sense
of their post-stroke process, journey to successful post-stroke adaptation, personal
characteristics, and inﬂuential ecosystemic factors. Finally, it allowed participant’s to
appreciate the individual meaning ascribed to the stroke event and the perceived impact
of the stroke on their long-term couple relationship. Exploring individual stories provided
and opportunity to appreciate individual attributes and ecosystemic inﬂuences when
faced with a traumatic life event. Through qualitative research analysis, three primary
classes of data emerged: Ecosystemic Inﬂuences on Post-Stroke Adaptation, Sense of
Coherence, and Social Constructionism. The use of grounded theory methodology was
expected to contribute to the development of new theoretical concepts and ultimately, a
strengths-based model to be utilized by clinicians when assisting couples following a

stroke event.

Dedicated to my Mother: Alice J. Stanley and my family, whose faith and encouragement
gave me the conﬁdence to pursue and successfully complete this journey.

iii

ACKNOWLEDGEMENTS

During each stage of this journey it was difﬁcult to image myself reaching this
point, where all that remained was acknowledging those who in different ways
contributed to my success. The past several years of my life have been primarily devoted
to my dissertation. The support and encouragement from many people have made this
pursuit possible. It is their friendship, prayers, and faith that are most signiﬁcant and will
forever remain in my heart.

First I would like to sincerely thank all the couples that participated in this
research study and their willingness to share their personal post-stroke journey and
experiences. Their incredible strength and resiliency continues to be an inspiration.

I would like to thank my major doctoral professor, Dr. Marsha Carolan, for her
patient and unfailing encouragement and guidance throughout my entire academic history
and dissertation process. Dr. Carolan was instrumental in motivating me during those
times when I felt overwhelmed and discouraged. It was her commitment and enthusiasm
that motivated me to ﬁnish this project. I am very grateful to have been able to work with
her.

I would like to thank my committee both individually and as a group for
providing a diverse and experienced basis of support and knowledge. Dr. Judy Brady, Dr.
David Imi g, and Dr. Darrell Meece each contributed their unique insights and experience.
I appreciate their willingness to participate in this study and their enthusiasm for research.
Each of you increased the research quality and overall value of this project. I would like
to thank Dr. Brady speciﬁcally, for her kindness and encouragement. Conversations (e-

mails) with her oﬁen inspired renewed interest and conﬁdence in my research.

iv

I am deeply indebted to my family for encouraging me to pursue my degree. Their
unfailing support provided me with the conﬁdence to persevere and ultimately succeed. I
would like to thank my mom, in particular, for being a constant source of love and
strength. She had the most extraordinary faith in my ability to be successful during this
venture and throughout my entire life. I enjoyed our daily meetings and brainstorming
sessions at the computer lab. I would also like to thank sister-in-law, Kathleen Stanley for
constantly offering her assistance any time and in any capacity. She reminded me to
focus on the end goal rather than the present.

I can never express my true appreciation for my niece and nephew, Katie and Josh
Stanley. Their unconditional support, unfailing conﬁdence, and amazing sense of humor
made the difﬁcult times more tolerable and the completion seem attainable. I am blessed
with two intelligent and kind older brothers Billy and David Stanley. Their individual
successes continue to serve as a personal inspiration.

I am lucky to have friends that continually enrich and inﬂuence my life. Jenny
London, my life long friend, has always been there to offer support and encouragement.
Jenny’s patience, kindness, and intuitiveness in addition to her extraordinary courage are
truly a rare gift. Thank you for your prayers and for simply being who you are. Although
I have known Andrea for a relatively short period of time, her laughter and ability to
make me smile was a wonderful giﬂ. I would also like to thank her for friendship during
this past summer, which was one of the most memorable (fun) summers I have spent. I
would like to thank Shawn V. for her unconditional love and support. She is truly an
inspiration to me and others that are fortunate enough to know her. It is difﬁcult to

convey my appreciation for Michelle, who has enriched my life in so many ways. She

was, and remains, a constant source of true friendship and support. Her conﬁdence and
belief in my ability to succeed, especially during the many times I felt overwhelmed or
frustrated was a continuous motivator. I would also like to acknowledge and thank Brian,
for his willingness to “jump in” at the eleventh hour. His ability to organize and prioritize
was greatly appreciated. Finally, I would like to thank Tim. His belief in me and
unfailing conﬁdence were instrumental in my ability to successfully complete this entire
journey. Tim has been one of my greatest supporters. Over the years, he has challenged
and encouraged me to pursue my dreams. He has been a signiﬁcant inﬂuence in my life,
for which I will always be truly grateful. I would not have been able to accomplish this
journey without him. My acknowledgments would be incomplete without acknowledging
my most beloved companion Mavis. When I returned to graduate school in August of
1996, I moved to Chicago, IL., leaving behind my family, friends, and my very best
companions, Mavis and Oati. While it may seem strange to include ones pet in the
acknowledgment section of a doctoral dissertation, Mavis, my black Labrador, is worthy
of acknowledgement. Mavis was a constant presence during graduate school, waiting
patiently hour aﬁer hour under my desk as I typed my graduate thesis. When I was home,
there was never a time when she was not near my side. She was an extraordinary

companion and loving friend.

vi

TABLE OF CONTENTS

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Chapter 1
INTRODUCTION ____________________ 1
Rationale for Study .3
Importance of the Problem .................................... 4
Conceptual Framework ...................................... - 5
Figure 1-1 Conceptual Map ........................................................... 6
Theoretical Framework. - - ................................................ 7
Human and Family Ecology .......................................................... 8
Sense of Coherence ...................................................................... 12
Narrative Study — Social Constructionism 14
Descriptions of Theoretical Map 16
Figure 1.2: Theoretical Map 17
Table 1-31 Research/Interview Questions ................................... 19
Chapter 2
REVIEW OF LITERATURE..___._-__ __ _ __ 21
The Nature of Chronic Illness: Impact of a Stroke ,,,,,,,,,,,,,,,,,,,, 2 2
Chronic Illness and Ageing __24
Marital Relationships and Chronic Illness 26
Gender Differences in Spouse-Care Providers ,,,,,,,,,,,,,,,,,,,,,,,,,,, 2 8
Spousal Care Providers and Role Flexibility _____ 3O
Meaning Ascribed to Illness “-33
Sense of Coherence .................. 34
Chapter 3
METHODOLOGY__ ....................... 36
Rationale for Qualitative Methodology 36
Grounded Theory _ 38
Case Study 40
Researcher as Instrument ________ 41
Research Questions and Objectives _ 41
Procedure ............................................................................................................ 4 2
Samole... ............................................................... ___42
Sample Acquisition and Recruitment "‘43
Data Collection ______ _ 44
Interview Process --44
Data Analysis.......................... ............ --47
Coding Process _ _ _ 48
Table 3.1: Final Coding Frame ,,,,,,,, 50
Trustworthiness _____ 5 1
Validity and Generalizability __ __ _ “,51
Researcher’s Role and Ethical Considerations ,,,,,,,,,,,,,,,,,,,,,,,,,,, 52

vii

Chapter 4

 

 

 

 

 

 

 

RESULTS AND DISCUSSION ............................................................................................. 54
Overview ................................................................................................................................ 54
Demographic Data _ _ __ = _______ _ ______________ 57
Inﬂuence of Ecosystemic Factors in Post-Stroke Adaptation __ _ _ _ 60

Code: Perceptions of Medical Experience _____ _ __60
Theme: Ability to Ask Questions and Receive Answers ,,,,,,,,, 61

Theme: lnvolvement in Medical Care ....................................... 64

Theme: Positive Experience in Medical Rehabilitation ,,,,,,,,,,, 67

Theme: Failure to Receive Tissue Plasminogen Activator ,,,,,, 72

Theme: Eroding Autonomygunm _73

Code: Social Support ........................................................................................ 77
Theme: Family Involvement ................................. 78

Theme: Congregational Support ................................................ 82

Code: inﬂuence of Marital Relationship ......................................................... 83
Theme: Communication ............................................................. 83

Theme: Role Flexibility .............................................................. 90

Sense of Coherence. ............................................................................... 99
Code: Psychological/Emotional Inﬂuence .................................................... 100
Theme: Ability to Overcome Depression ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, 100

Theme: Tenacity/Perseverance ............................................... 104

Code: PhilOSOPhical ....................................................................................... 106
Theme: Spiritual Beliefs .......................................................... 106

Social Constructionism ....................................................................................................... 107
Couple 1 ........................................................................................................... 108
COUPle 2 ........................................................................................................... 109
Couple 3 ........................................................................................................... 109
Couple 4 ........................................................................................................... 110
Couple 5 ........................................................................................................... 110
Couple 6 ........................................................................................................... 111
Couple 7 ........................................................................................................... 111
Couple 8 ........................................................................................................... 111

Chapter 5
Summary and Implications ................................................................................................ 113
Conceptual Framework- ..................................................................... 114
Figure 5-11 Conceptual Map ............................................................................................... 116
Theoretical Foundations and Implications ........................................................................ 117
Key Findings ....................................................................................................................... 117

Relational Resiliency ...................................................................................... 119
Marital Commitment. ...................................................................................... 122
Contribution to Existing Literature .................................................................................... 123
Ambiguous Loss ............................................................................................. 123
Clinical Implications ........................................................................................................... 125
Research Implications ......................................................................................................... 127

viii

Limitations ..........................................................................................................................
Conclusion ...........................................................................................................................

APPENDICES
Appendix AI Letter to Participants .................................................
Appendix 13: Informed Consent .............................................
Appendix C: Semi-Structured IntervieW Guide ...............................................................

 

REFERENCES ......................................................................................................................

ix

128
129

130
131
133

134

Chapter 1
INTRODUCTION

In the United States, a cerebrovascular accident (stroke) occurs every 53 seconds;
and death from a stroke every 3.3 minutes. More speciﬁcally, 750,000 Americans per
year will experience a stroke and 167,661 will die as a result (American Stroke
Association, 2002). A stroke remains the third leading cause of death in the United States
and the second leading cause of death in the world, contributing to an estimated 4.4
million deaths (Murray & Lopez, 1997). The annual economic cost of a stroke in the
United States is approximately 49 billion USD annually; the human cost however, is
immeasurable (Center for Disease Control, 2002).

A stroke is deﬁned as a medical crisis, occurring when blood supply to the brain
is interrupted by an occlusion or hemorrhage. Although a stroke occurs within the brain,
it impact the entire human body contributing to extensive cognitive, physical, emotional,
biopsychosocia] impairment, and neurobehavioral disorders. According to the Global
Burden of Disease Project (Murray & Lopez, 1997), a stroke is the leading cause of
serious long-term adult disability resulting in partial or total loss of functional
independence.

An unexpected loss of functional ability in addition to complex perceptual
changes, is a signiﬁcant challenge to a stroke survivor’s sense of identity and self-concept
(MacMillan, Hart, Martelli, & Zasler, 2002). Limitations of autonomy and social
functioning can render a self-concept based on physical aptitude and mastery, untenable.

In addition to the loss of functional capacity, a stroke usually decreases the

survivor’s ability to effectively maintain preexisting familial relationships and social

roles (Fields, Cordel, & Bowman, 1983), which can have deleterious consequences for
the survivor’s perception of self competence and agency (Glass & Maddox, 1992).
Previous research suggests that the emotional impact of post-stroke losses and caregiving
pressures constitutes a psychosocial crisis for the entire family (Palmer & Glass, 2003;
Cohen, Harbin, Collis, & Greenberger, 1986). Although some physiological symptoms
can be detected, by nature a stroke occurs without warning providing no time for post-
stroke adjustment. Depending on the extent of post-stroke disability, families are forced
to make signiﬁcant adaptations both as a unit and as individual family members. Family
members, most often the survivor’s spouse, must immediately assume the role of
caregiver, managing and supporting the vast consequences commonly associated with a
stroke. Furthermore, the survivor and his or her family are ill equipped and unprepared
for the multifaceted health care system, which requires immediate adaptation and
participation. Previously healthy and active individuals are suddenly disabled, oﬁen
losing a portion or all functional, emotional, physical, and cognitive abilities (Kelly &
Winograd, 1985).

Due to the signiﬁcant reduction in health care coverage and other cost control
measures, survivors can be discharged from an acute medical care setting within 1 to 2
weeks following a stroke (Schmidt, Guo, & Scheer, 2002) at which time, some stroke
. survivors are transferred to a rehabilitation setting. Typically before the survivor is
medically stable, the survivor’s family must decide if they are able and willing to
provided home health care or begin the difﬁcult and painful process or selecting a long-
term care facility. According to Anderson, Linton, and Stewart-Wynn (1995), after stroke

survivors are released from medical care, 80% return home, necessitating full or partial

dependence on family for emotional, physical, and psychological assistance (National
Stroke Association, 1999). Post-stroke dependence is due primarily to functional
limitations including the inability to perform activities of daily living (ADL’s),
emotional, and cognitive incapacitation. From 1970 to the early 19908, the number of
non—institutionalized stroke survivors increased from 1.5 million to 2.4 million and
continues to rise annually (ASA, 2002).

Rationale for Stuay

This research project examined the inﬂuence of ecosystemic factors, social
constructionism, and sense of coherence on post-stroke adaptation and relational impact.
This study was both unique and signiﬁcant as it explored participant’s sense of coherence
(SOC) and environment inﬂuences to determine what factors facilitated or hindered
participant’s post-stroke process in relation to adaptation. Finally, it allowed participant’s
to appreciate the meaning ascribed to the stroke event and consider the impact on their
long-term couple relationship.

Medical outcome studies have traditionally focused on biological parameters of
disease; however, there is a growing interest in systemic factors that contribute to
individual outcomes and adaptation. Identifying inﬂuential ecosystemic factors may
provide clinicians the opportunity to appreciate and delineate the reason why some
individuals are able to successfully adapt when faced with an illness while others are not.
For purposes of this research study, adaptation is deﬁned as a multifaceted concept which
includes several speciﬁc indicators including the following: acceptance of disability,

perception of and psychological and social functioning.

Importance of Problem

When a stroke occurs in middle-age and in the context of a long-term marital
relationship, previously established patterns within the marital dyad must be re-deﬁned,
reorganized, and renegotiated. For the purposes of this research study, a long-term
marriage is deﬁned as in excess of 10 years and middle-age, over 50 years old. Some
changes can be made with relative ease while others are more difﬁcult or require greater
adaptive resources.

Post-stroke adaptation and biopsychosocial impact vary appreciably depending on
the nature and extent of the stroke and pre-stroke factors including pre-morbid health
status, comorbitity, pre-stroke personality, meaning ascribed to the stroke event, social
support, and pre-stroke family dynamics (Burman & Margolin, 1992). The degree of
adjustment within the marital dyad may be more difﬁcult in middle-age long-term
partners as they are more likely to have established traditional gender roles.

A stroke within a martial relationship creates a signiﬁcant amount of stress on the
couple dyad. In a long-term marriage, a spouse is typically the survivor’s closest family
member, and the person the survivor often relies on for physical care, social interaction,
emotional support, and ﬁnancial assistance. The spouse’s reaction following their
husband or wife’s stroke is directly linked to the survivor’s personal perception of his or
her disability, self-concept, and self-esteem (Helgeson, 1993; Lawton, Rovine, Moss,
Kleban, & Glicksman, 1989). The subjective exploration of successful post-stroke
adaptation is expected to provide valuable insights necessary to the development of

grounded theory.

Conceptual Framework

The conceptual map (See Figure 1.1) depicts a visual representation of this study.
When post-stroke consequences disable one partner in a long—term marriage, the marriage
system as a whole may be at risk of becoming less functional. However, speciﬁc
ecological correlates reciprocally interact and inﬂuence the stroke survivor and his or her
spouse’s post—stroke process. The concepts proposed by Bronfenbrenner’s human
ecological theory (1979, 1992) are signiﬁcant to this study and will be discussed in the
theoretical perspective section in greater detail. The conceptual map illustrates the
signiﬁcance of the couple’s pre-stroke marital relationship, which will likely inﬂuence
their experience of both the stroke itself and the capacity for the couple to successfully
navigate the consequences of the stroke on their relationship. The conceptual map
identiﬁes various ecosystemic considerations that possibly impact the ability of a marital
dyad to successfully adapt following a stroke. Circles are used to represent these
environments. This conceptualization also includes sense of coherence as a possible
mediating factor such as comprehensibility, manageability, and meaningfulness in
relation to the stroke survivor’s and spousal care provider’s perception of inﬂuential
personal resources contributing to individual recovery processes. Finally, Social
Constructionism asserts that people make meaning of their experiences and act in
accordance to their constructed realities through the process of mutually co-editing their
stories. This map illustrates that the stroke and entire recovery process entails individual
processes by which each individual makes meaning of this experience, ultimately

culminating in a joint story about the impact of the stroke on the couple relationship.

      

 

 

    
   
    

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Theoretical Framework

Examining post-stroke adaptation was accomplished in the context of three major
theoretical perspectives and through the development of a separate, yet uniﬁed, theory
which integrated components of each. Human Ecological Theory, (Bronfenbrenner, 1979,
1986), Social Constructionism (Gergen & Gergen, 1984), and Sense of Coherence (SOC)
(Antonovsky, 1987) provided an appropriate multi-framework useful to explore
participant’s post-stroke adaptation and coping process and the meaning ascribed to the
impact of the stroke on their couple relationship. Each theory provided a lens through
which inﬂuential ecosystemic factors, individual coping processes, and individual
meanings ascribed could be explored.

Bronfenbrenner’s model of human ecology (1979, 1986) is central to this study
and provided a relevant theoretical framework to explore systemic inﬂuences on the
reciprocal interaction of individuals within multiple environments. This study focused on
the personal stories of both the stroke survivor and his or her spouse, while incorporating
the ecological context and narrative meanings ascribed. Social constructionism provided
a theoretical background to explore individual post-stroke adaptation processes and
meanings ascribed to the stroke event. The third theoretical approach relative to this
study was the adaptive theory, Sense of Coherence (SOC) (Antonovsky, 1987). Post-
stroke adjustment and adaptation is inﬂuenced by many factors including personality
resources, coping ability, and meaning ascribed to disability.

Human and Family Ecological Theory
Examining the impact of a stroke on middle-age couples in long-term marriages,

from an ecological perspective revealed unique relationships between individual post-

stroke adaptation and inﬂuential ecosystemic environments. These factors included
perception of medical experience, social support, and pre-existing marital constructs.

The composition of an individual’s ecosystem is determined by the interaction of
systems, subsystems, and individual roles. A stroke survivor is inﬂuenced by several
interacting environmental systems, which include nuclear, and extended family members,
medical/health care environment, and social environment. The stroke survivor’s marital
relationship is part of several interacting systems, including family, health care systems,
social support, and medical environment. Environmental inﬂuences have a positive

and/or negative impact, which may hinder or facilitate individual successful post-stroke
adaptation.

Bronfenbrenner (1977) emphasized the need to examine interactions between
people and the changing environment in which they live to understand human
development. The human ecological theory focuses on human-environmental interaction
within a network of systems, subsystems, and supra systems. Ecosystems are the primary
concept in human ecology and the basic element of human-environmental interaction and
analysis. According to Bronfenbrenner (1979), individuals function within four primary
interconnected environmental systems, conceptualized in order of proximity to the
individual, and it is within these environments that individuals are constantly interacting
and evolving. Bronfenbrenner’s (1979) theory of human development illustrates
reciprocal interactions between several environmental systems and human beings within
these systems. Over the course of one’s life span, people and their environments mutually

accommodate constant change and growth.

Bronfenbrenner (1979) deﬁnes these systems as follows:

Microsystem - the immediate environment including direct interaction between
individuals and the changing environments in which they exist. A couple’s microsystem
includes the marital relationship, immediate family members, peer relationships, and
occupational environments.

Macrosystem - A macrosystem relates to broad inﬂuences that affect all other
systems including cultural deﬁnitions and sociological ideological values that affect the
way in which individuals interact in other systems. Social norms inﬂuence how meaning
is ascribed to post-stroke disability and how individuals make sense of their experience.

Mesosystem - A mesosytem includes all environmental systems in which the
developing person interacts including work, educational environments, community and
social environments such as church and support groups. It is important to consider the
mesosystemic environment, as post-stroke consequences do not affect only one area of a
couple’s life. The process of operating in different settings is not mutually exclusive as
environmental inﬂuences are reciprocal and operate in both directions. Although the
family is the primary context in which human development occurs, there are other
settings in which development process can occur.

Exosystem - The exosystem does not directly involve the family but can affect or
be affected by the family. Individuals signiﬁcant to the developing person are involved in
these systems (e.g., social networks or occupational environments). It connects several
support systems however the individual is not a direct participant. For example, an
indirect connection may be evident if managed care insurance providing stroke

rehabilitation also allowed psychological services. Therapeutic counseling would

signiﬁcantly increase the professional psychosocial support a couple may receive
immediately following a stroke. The healthcare system (e.g., hospital/rehabilitation
environment) is an applicable exosystem in this research project. Both the medical and
rehabilitation settings played an important role in each participant’s post—stroke
adaptation process.

For purposes of exploring the inﬂuence of different environmental systems in
human development over a period of time, later work by Bronfenbrenner (1986) included
the chronosystem.

Chronosystem - Life transitions are the primary concepts within the
chronosystem. Expected and non-expected transitions occur over the course an
individual’s lifetime. Normative transitions are expected transitions that occur over the
course of normal development including marriage, childbirth, and retirement; non-
norrnative transitions include divorce, moving, unexpected family medical crisis, and
death. These transitions occur over the course of an individual’s lifetime and can inspire
developmental changes.

Bronfenbrenner’s (1979) conceptualization of environmental inﬂuence on
individual development is a practical paradigm for this study. It is strengthened by
including integral concepts of the Process-Person-Context Model (Bronfenbrenner,

1992). Speciﬁcally, this model recognizes the reciprocal effect of environmental and
personal characteristics working together to produce a more substantial effect on human
development than either does by itself.

Bronfenbrenner (1992) deﬁnes the two primary concepts of this model as follows:

1. The design permits assessment not only of developmental outcomes but also

10

of the effectiveness of the processes producing these outcomes (p. 199).

2. The design reveals how both developmental outcomes and processes vary as a
joint function of the characteristics of the person and of the environment, thus
permitting the detection of synergistic effects (p.200).

Although stroke survivors interact and develop in a variety of microsystems, the
marital relationship is one of the most inﬂuential contexts regarding post-stroke
adaptation and directly inﬂuences the stroke survivors overall outcome. The marital
structure is inevitably affected following a stroke event as each member attempts to cope
with the changes among and between themselves (Minuchin & Nichols, 1993).

Sense of Coherence

The inﬂuence of SOC as a personality factor explicating the differences in
individual coping and adaptation ability following an unexpected medical crisis has
received increased attention in psychological and medical related disciplines and may
provide an expansion to existing family systems theory. SOC is a mediating or decisive
factor that contributes to an individual’s ability to effectively adaptation in a medical
crisis and provided a useful framework to examine the relationship between SOC and
post-stroke adaptation within the context of long-term marital dyad.

According to Antonovsky (1979, 1987), SOC is a symbolic and prevailing
personality factor directly linked to an individual’s ability to adapt following a disabling
medical crisis. It represents one’s perception of manageability and control over life and
provides insight into individual differences in coping and adaptation. The three
reciprocally interacting components of SOC are identiﬁed as contributors to individuals

perception: comprehensibility, manageability, and meaningfulness. Each contributes to

11

an individual’s general perception of their world and perceived ability to successfully
cope when faced with a crisis. Comprehensibility refers to the degree to which the
stressor is to be organized and predictable. Manageability is the perception that the
demands of the stressor are manageable and that the personal resources necessary to
control the stress is available. Meaningfulness refers to the perception that the stressor is
understandable and individual is motivated to the An individual’s SOC facilitates the
ability to cope and adjust while maintaining psychosocial and physical health. When
faced with a medical crisis, those with higher levels of SOC were found to use more
constructive means of coping with stress by perceiving it to be controllable,
understandable, and were motivated to adapt.

Post-stroke consequences typically include partial or total dependence, physical
limitations, and a signiﬁcant adjustment period for both stroke survivors and his or her
spouse (Crewe & Kraus, 1988, 1990; Marinelli & Dell, 1977; McCubbin, Hamilton, &
Patterson, 1982). Although, it is common for survivors and caregivers to experience
stress, anger, and depression, empirical and clinical data have demonstrated that the
degree of psychological affect varies considerably among individuals faced with a similar
diagnosis (Kulchycky, & Goodwin, 1988; Goldberger & Breznitz, 1982; Freedman,
Kaplan, & Sadock, 1975). Researchers have expressed a growing interest in the
psychological and social factors that inﬂuence an individual’s ability to cope both
physically and psychologically (Antonvosky, 1987; Dohrenwend & Dohrenwend, 1981;
Garrity & Marx, 1985; Holyroyd & Lazarus, 1982).

According to Antonovsky (1987) and Sagy ( 1990), the degree of marital crisis

following a stroke is predicated on the couple’s ability to c0pe with multiple unexpected

12

or adverse demands inherent in post-stroke adjustment (Maturana & Varela, 1992).
Lavee, McCubbin, and Olson (1987), assert that higher levels of SOC within a marital
dyad, enhances a couple’s marital perception, enthusiasm, and the ability to successfully
work through post-stroke emotional issues. SOC is not a mutually exclusive factor but a
shared experience that directly affects the ability of a couple to successfully or
unsuccessfully adapt or adjust following a stroke. For example, if a stroke survivor has a
strong SOC, his or her spouse is typically less anxious and consequently able to cope
more effectively (Antonvosky & Souramin, 1988; Baider & Kaplan -— De-Nour, 1988;
Kelly & Lambert, 1992).

The ability to successfully adapt following a stroke is linked to both individual
personality factors and a supportive spousal relationship, which is more likely to be found
in long-term marriages. Chamy (1986) suggests that individual partner’s brings speciﬁc
assets and limitations into a marital relationship and couples adjust in ways that take
advantage of each other’s strengths and weaknesses. This adjustment allows married
individuals to function effectively together or separately, demonstrating the inﬂuence of
personal and ecosystemic factors on adjustment. Several recent studies (Rena, Moshe, &
Abraham, 1996; Feigin, 1998; Nillson, Axelsson, Gustafon, Lundman, & Norberg, 2001)
explored the differences among post-stroke couples and their ability to adapt within the
context of marriage. The results revealed a positive correlation between SOC and
adaptation to disability regardless of the degree and extent of disability. Individual SOC
was empirically linked to successful post-stroke adaptation and had a signiﬁcant role

throughout all stages of disability (Antonovsky, 1987).

13

Narrative Study - Social Constructionism

Respect and value of individual perceptions and meanings constructed through
personal experiences is a primary tenet of narrative inquiry. Employing a narrative stance
empowered participants to become “experts” of their personal post-stroke processes and
experiences (White & Epston, 1990). Social constructionism recognizes the tendency and
value of individuals to story their life experiences based on their perception and
construction of reality (Moules, 2000). The social constructionist approach suggests that
individuals actively participate and interact within their social-cultural environment.
These environments include assumptions, “taken for granted” rules, and beliefs about
what it means to be disabled or unwell. It is within this framework of shared deﬁnitions
that stroke survivors and care-giving spouses interact and behave accordingly.
Fundamental beliefs and knowledge about a stroke is a collective socio-cultural construct
of the survivor and caregiver (Atwood, 1992). The meaning ascribed to post-stroke
consequences is based on a couple’s collective contextual or cultural experiences (Gergen
& Davis, 1985) and perception of reality constructed from personal experiences and close
relationships (Franz & White, 1985). It is the con-constructed deﬁnition of health and
illness that directly affects and governs the way in which couples structure and organize
following a stroke.

The social systems of the survivor and caregiver inﬂuence their belief systems,
lifestyle, and experiences relating to health and disability. The social constructionism
model allowed the researcher to focus on participating couple’s perception of illness and
the impact of the stroke on their couple relationship. By storying individual experiences,

participating couples identiﬁed individually and collectively beliefs about the stroke

14

event, post-stroke experiences, the affect on family, and what changes are desired in
response to the stroke.

In this sense, narrative processes can be understood as an effort to face negative
life outcomes and to cope with the impact of change and loss. Researchers agree that in
order for a couple to make sense of a stroke experience, events must be organized in a
way that demonstrates chronological dimension (Bruner, 1990; Mishler, 1986). Narrative
stories carry implications for the well being of the stroke survivor and his or her spouse,
helping to elucidate a variety of potential outcomes. In doing so, the couple can reﬂect
and create desired or anticipated future events. In effect, a survivor and his or her spouse
become historians of the “self” and as a couple, developing an internally consistent
interpretation of the life cycle so that past, present, and future are experienced as
congruent. The assumption is that such processes work to preserve a sense of coherence
and continuity in identity and self, which are seen as critical determinants of mental

health (Antonovsky, 1987; Basch, 1976; Cohler, 1982).

15

Description of Theoretical Map

Figure 1.2 is an illustrative representation of the theoretical concepts that guided
this research study. Ecosystemic environments relative to participating post-stroke
couples and outlined by Bronfenbrenners’ human ecology theory (1979, 1986) are
depicted by the outer sectors of the map. The concept of individual successful post-
stroke adaptation is reﬂected within each system.

Sense of coherence (SOC) is relevant to personal characteristics of each
individual participant and the way in which their experiences and perceptions are
processed. Successful adaptation, represented in proximity to stroke survivor and his or
her spousal caregiver, reﬂects the meaning attributed to the impact of the stroke on their
couple relationship. Speciﬁc ecosystemic inﬂuences contributed to individual post-stroke
self-narratives.

The process of social constructionism occurs within the context of individual
experiences and contributes to the meanings ascribed to the stroke event. It is these
meanings that inform each participant’s current and future beliefs and consequently, their
behavior (White & Epston, 1990). Separately and conjointly, stroke survivors and
spousal caregivers choose different parts of their experiences from the past and present,
as well as future expectations and connect them in a manner that allows them to create

self-narratives (Gergen, 1985).

16

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Three primary research questions were developed based upon the on the
theoretical and conceptual maps. Research and corresponding interview questions are

represented in Table 1.3. The research questions explored in this study were as follows:

Human Ecological Theory

1. How do aspects of the ecosystem inﬂuence adaptation involving each member
in post-stroke couples?

1 a. Mat is most/least helpful in the medical system in regard to promoting
adaptation?

I b. What types of social support are most/least helpful to post-stroke
adaptation?

1c. How does the marital relationship itself inﬂuence adaptability?

Adaptive Theory - Sense of Coherence
2. How does sense of coherence (SOC) inﬂuence individual members of long-
term marriages post- stroke adaptation?
Social Constructionism

3. How does each member of the couple make meaning of the impact on their
couple relationship?

18

Table 1.3 Research/Interview Questions

Research Questions: Interview Questions:

Human Ecological Theogy

How do aspects of the ecosystem inﬂuence
adaptation involving each member
in post-stroke couples?

1a. What is most/least helpful in the medical Tell me about your medical experience
system in regard to promoting adaptation? relating to the stroke?
What did you believe was most helpful?
Why?
What did you believe was not helpful?
Why?
1b. What types of social support were What types of social support did you
most/least helpful to post-stroke utilize in your recovery
adaptation? What type was integral to your
recovery?
I How were these types of support most
helpful? .
I What about this support do you feel
made it so helpful?
I How were these types of social support
was not as helpful?
I What about this support do you feel

made them not as helpful?
1c. How does the marital relationship itself, How do you think the marital
influenced adaptability? relationship itself influenced

your successful adaptation?

What type of impact did the relationship
have on role ﬂexibility?

I How did the two of you communicate
prior to the stroke?

I What is it about the way the two of you
interact that has helped you following
the stroke?

I Is there anything about the way the two
of you interact that made it difﬁcult to

interact?
Sense of Coherence
2. How does sense of coherence (SOC) What are the things about you as an
influence individual members of long- term individual that you help adapt?
marriages post-stroke adaptation? What is you general outlook on life?

I How do get personal strength?

Social Constructionsim

3. How does each member of the couple Tell me about what impact you feel the
make meaning of the impact on their stroke had on your present
couple relationship? relationship?

19

In Chapter One, the theoretical and conceptual maps are explicated, setting forth
the speciﬁc areas under study. Chapter Two deﬁnes the theoretical framework and
relevant literature review related to post-stroke adaptation in middle-aged, long-term

married couples.

20

Chapter 2
REVIEW OF CRITICAL LITERATURE

The majority of empirical research pertaining to cerebrovascular disease (stroke)
has focused on the physiological and psychological consequences of the stroke survivor.
Comparatively fewer studies have explored the inﬂuence of ecological and personal
factors when investigating the post-stroke impact and subsequent adaptation process of
middle-age couples in long-term marriages. Examining a long-term marital dyad may
provide important insight in to those at risk for experiencing adverse outcomes when
faced with an unexpected crisis (Carter & Carter, 1994; Primomo, Yates, & Woods,
1990)

The existing literature suggests that several factors inﬂuence adaptation within a
marital dyad following an unexpected medical crisis or chronic illness. These factors
include: nature and extent of the medical crisis, developmental stage the couple, role
ﬂexibility, and social support. The ecosystemic factors that inﬂuence adaptation
following a chronic illness include: access to healthcare, medical perception, and the
quality of the pre-stroke marital relationship. Some of these factors will be examined by
the design of sampling (e. g. nature of the illness, gender, developmental stage). Other
factors will be accounted for in the theoretical and conceptual frameworks and research
questions (e. g. marital relationship, meaning ascribed to illness, (SOC), and access to
healthcare). The following literature review will explore scholarship in each of the

following areas.

21

The Nature of Chronic Illness: Impact of a Stroke

In order to appreciate the deleterious impact of a cerebrovascular accident, it is
necessary to understand basic neurological causation and post-stroke consequences.
There are several different types of strokes however; a cerebral infarction or cerebral
ischemia is the most common type of stroke, accounting for approximately 80% of all
strokes. When a cerebral ischemia occurs, blood vessels in or around the brain become
blocked. A blockage can originate in an artery of the brain or elsewhere in the body, often
the heart. When the blockage or clot breaks off it can travel to the brain, until it lodges in
a blood vessel (ASA, 2002). These "traveling clots" are called emboli. Strokes caused by
emboli from the heart are often seen in people with an irregular heartbeat (arterial
ﬁbrillation), as well as those following a heart attack or heart surgery. The degree and
type of post-stroke disability depends of the extent of damage and where the stroke
occurred (Periard & Ames, 1993).

Paralysis is a common post-stroke consequence affecting the side of the body
opposite to the damaged brain region. For example, damage to the right cerebral
hemisphere results in paralysis on the left side of the body (left hemiplegia), while leﬁ
cereme hemisphere damage results in paralysis of the right side of the body (right
hemiplegia). Survivors with left cerebral damage may also experience speech and
language problems; respond with more caution and uncertainty, and in a disorganized
manner. Survivors with right cerebral damage tend to have language function problems
that can include excessive talking, impaired speech, decreased attention span, and visual-

spatial perceptual deﬁcits. Visual-spatial deﬁcits affect the ability to accurately judge

22

depth, distance, size, rate of movement, and relation of parts to the whole (Fowler &
Fordyce, 1972).

A stroke is often associated with pre-existing systemic factors such as age, access
to proper medical care, premorbid health, smoking, obesity, and perception of health and
illness. Depending on the severity of the stroke and the access to professional
occupational, speech, and physical therapy, a stroke survivor may be able to regain some
semblance of pre-stroke functions (Henderson, 1984). Post-stroke adjustment is generally
deﬁned and measured by the degree of consequential disability in a number of areas.
Those who have experienced a stroke are at a greater risk of having a subsequent stroke,
which is often a major concern for both the survivor and their support system and the
reason it is imperative that stroke symptoms are recognized. Controlling the underlying
cause of a stroke directly inﬂuences the level of recovery and decreases the potential for
future strokes.

Stroke survivors are often left with residual chronic disabilities and psychosocial
impairments affecting a wide variety of aspects of their daily life (Rau, 1991). Post-stroke
functional disability occurs in approximately ninety-percent of stroke survivors and can
present a signiﬁcant challenge to pre-existing family dynamics (Periard & Ames, 1993;
Sacco, Wolf, Kannel, & McNamara, 1982). Survivors with severe post-stroke disabilities
usually necessitate high levels of attention and care. For example, post-stroke paralysis or
equilibrium difﬁculty may require assistance with ambulation and with other activities of
daily living (ADL’s) (e.g., bathing, dressing, preparing meals, taking medication). In
addition, survivor’s suffering from post-stroke confusion, memory problems, or impaired

vision may require constant supervision for reasons of personal safety.

23

Due to physical and/or cognitive disabilities, post-stroke consequences for the
survivor can include role loss, relocation to care setting, and increased dependency.
Moreover, a stroke oﬁen disrupts the survivor’s ability to communicate effectively, either
temporarily or permanently, causing interaction with friends and family to be difﬁcult
(Rau, 1991).

Chronic Illness and Ageing

Due to the increasing prevalence of stroke and the rapidly aging population at risk
for stroke, the number of spouse caregivers is expected to increase dramatically.
Accordingly, if one member in a long-term marital relationship is faced with a chronic
disease or disability, the spouse will likely become the primary care provider, responsible
for providing both physical and emotional support.

Chronic illness is a major concern for aging adults and is more likely to occur in
older adults than any other age group (Corbin & Strauss, 1984). According to McDaniel,
Hepworth, and Doherty, (1992), 45% of adults over the age of 65 were limited due to a
chronic medical condition or disability. Although a stroke seldom occurs before the age
of 45, after 45, the risk for experiencing a stroke doubles (Life Extension Foundation,
2002). In middle-age and elderly populations, a stroke is a leading cause of disability.

Due to caregiver burdens, a stroke that occurs in middle-age may be more
detrimental than during other developmental stages. Caring for a chronically disabled or
ill spouse is particularly challenging in later-life when illness threatens the mortality of a
long-term relationship. Marital relationships may be at higher risk for failure depending

on factors such as the age, physical health, and socioeconomic status. A spouse,

24

particularly those in long-term marriages, who must relinquish their previous duties and
responsibilities, may experience feelings of guilt and sadness due to the shift in roles.

In elderly survivors, post-stroke adaptation has been related to the level of pre-
stroke function. Less physical limitations pre-stroke were associated with better physical
outcome and a lower risk of medically necessitated institutionalization (Colantonio,
Kasl, Ostfeld, & Berkman, 1996). In one study lower levels of functional recovery were
reported by younger stroke survivors with signiﬁcant post-stroke disability in
comparison to older stroke survivor’s that had actively participated in post-stroke
rehabilitation programs (Ferrucci, Bandinelli, Guralnik, Lamponi, Bertini, F alchini, &
Baroni, 1993). According to researchers, these results may have been due to the older
survivor’s coping mechanisms and compensatory tactics (F errucci, et al., (1993). Wyller
(1998) suggests that in older stroke survivors, the presence of a supportive social
network was a salient factor in increased feelings of well-being and in predicting
successful post-stroke outcomes.

The psychological reaction to chronic illness or chronic disability, such as a
stroke, varies among individuals and partially depends on the stroke survivor’s particular
stage of development. Each developmental stage has speciﬁc stressors aside from those
imposed by an unexpected medical crisis or chronic illness. If a stroke is experienced
during middle-age, the survivor’s spouse is most likely to become the primary caregiver
(Freese, 1990). In a long-term marriage, the spousal caregiver assumes the role of
providing care while attempting to maintain the integrity of the family and couple
relationship (Harke & King, 2002). Experiencing a stroke during this time can include

signiﬁcant interpersonal consequences for the survivor’s spouse who may be in the

25

process of re-evaluating his or her personal life accomplishments and future personal
goals. A survivor’s spouse may perceive post-stroke disability or restrictions as an
obligation or threat to his or her own future.

In middle-age, a person is more likely to have established a career, be involved in
a committed relationship, and are often providing support and guidance to their own
children as they begin to leave the family and become independent (Marinelli & Orto,
1978). While in good health, middle-aged couples oﬁen begin to prepare for retirement as
life long dreams appear to be within reach (Roessler & Bolton, 1978). In middle-age,
adults are typically aware of the potential for chronic illness or disability however; their
life scripts do not typically plan for its occurrence until old age.

Post-stroke disability suffered in middle-age often impedes further occupational
growth and necessitate early retirement. This can have a signiﬁcant impact on the
survivor’s identity, self-esteem, and economic well-being of the entire family system
(Raderstorf, Hein, & Jensen, 1984). Also during this time, adults begin to assume
responsibility for their own parents who may be increasingly dependent which can add to
existing ﬁnancial and emotional stress.

Marital Relationships and Chronic Illness

Past and present research consistently demonstrates a positive correlation between
marital status, health, and immunity against chronic illness. Carrere, Gottman, and Ochs,
(1996) report that a supportive caring spouse is directly linked to healthier immune
ﬁmctioning in their spouse and increased protection against chronic medical conditions in
his or her partner. In a study of cardiac patients, researchers, Coyne, Rohrbaugh, Shoham,

Sonnega, Nicklas, and Cranford, (2001) demonstrate that the level of marital quality is a

26

signiﬁcant predictor of survival following congestive heart failure. Moreover, marital
quality is directly associated with decreased requests for pain medication and re-
hospitalization, increased compliance with prescribed medical regimens, and improved
post surgical outcomes (Kulik & Mahler, 1989). In the same study, patients that
perceived negative reactions from their partners, exhibited higher levels of pain related
behavior (Schwarts, Slater, & Birchler, 1996).

Furthermore, research documents that individuals who are unmarried have higher
mortality rates (Berkman & Syme, 1976), less chance of surviving if diagnosed with a
chronic medical condition (Gordon & Rosenthal, 1995) and less adherence to prescribed
medical regimens (Goodwin et al., 1987). Additionally, Weissman (1987) determined
that unmarried individuals have a signiﬁcantly higher rate of major depression than those
who are married. However, simply being married does not guarantee protection from a
chronic illness or disability.

Married couples with lower levels of marital satisfaction have demonstrated
compromised immune systems, higher rates of general health problems, and a higher rate
of negative health outcomes (Greene & Grifﬁn, 1998). Researchers believe that
conﬂictual and negative marital relationships outweigh the beneﬁts reported by
individuals with high levels of marital satisfaction.

Researchers propose that post-stroke marital quality and family adaptation is
directly correlated to the level of post-stroke disability, emotional changes, and the level
of cognitive impairment (Brocklehurst, Morris, Andrews, Richards, & Laycock, 1981).
According to Dennis, O'Rourke, Lewis, Sharpe, and Warlow, (1998), the more

dependant the survivor, the more likely a caregiver will experience depression. Data

27

conﬁrms that post-stroke behavioral changes rather than physical impairment contributes
to caregivers' reported stress and depression (Anderson et a1. 1995). Furthermore,
providing care for survivors with high levels of depression or anxiety was found to be
particularly stressful for spousal caregivers (Addington, Hall, Lay, Altrnann, &
McCarthy, 1998).

Gender Differences in Spouse-Care Providers

In 1997, researchers reported that over 2 million Americans provide care to a
disabled or elderly person (Neal, Ingersoll, & Starrells, 1997). According to demographic
data, caregivers are most often married, middle-aged, and female. Due to the history of
gender socialization, it is not surprising that women are more likely to offer to provide
care and accept care-giving roles. Approximately half of these women are employed,
35% are over the age of 65, and of those older than 65 many have their own personal
chronic medical problems (McCauley, 1994). Gender differences in spousal-caregiving
signiﬁcantly affect the nature and extent of care (Brok, 1992; Gwyther, 1990; Vinokur,
1990).

In one study involving postoperative cardiac patients, women reportably provided
more conducive recovery environments, due to the fact that it is women who are typically
responsible for the family’s general health care and therefore, were likely to be more
familiar with care-giving (Badger, 1990). In contrast, men were more likely to solicit
care-giving and housekeeping assistance from others while their wives were recovering
or became disabled. According to Young and Kahana (1989), male caregivers were more
focused on home repair projects, household chores, and provision of medically related

transportation, while female caregivers reportably focused on household activities

28

including cooking, cleaning, laundry, and shopping. Other similar studies determined that
the duration of the chronic illness or disability resulted in lower adjustment levels for
women whereas, the decreased ability to effectively perform regular responsibilities and
activities of daily living resulted in lower adjustment levels in men (F oxall, Eckber, &
Grifﬁth, 1986). Women also displayed less enthusiasm to care-giving and in their
attempts to manage multiple roles, report feelings of guilt and inadequacy McCauley,
19+94). Male spouse-care providers reported lower levels of depression (Cohen, Luchins,
Eisdorfer, Paveza, Gregory, 1990) and were less likely to express feelings of anxiety or
fear in an effort to avoid exacerbating their spouse’s distress level and concerns (W orby
& Babineau, 1974).

In the majority of studies focused on gender and caregiving, researchers purport
that women versus men, reported higher stress levels (Cassileth, Lusk, & Strouse, 1985),
depression (Lieber, Plumb, Gerstenzang, & Holland, 1976), lower levels of marital
satisfaction (DesRosier, Catazaro, & Piller, 1992), increased mood ﬂuctuations and
elevated levels of ensuing mental health problems (Young & Kahana, 1989). Moreover,
researchers assert that women reported higher rates of subjective burden, feelings of
social isolation, perceived loss of companionship, conﬂicting and overwhelming role
changes, and perceived demanding or insensitive survivor behavior (Parks & Novielli,

2000).

29

Spousal Care Providers and Role Flexibility

Experiencing a stroke is understandably a traumatic event for the stroke survivor;
however, researchers believe that the survivor’s spouse experiences comparable
psychological distress. Previous research suggests that spouses of chronically ill patients
have equal or higher levels of stress and anxiety with wives of male patients being the
highest (Oberst & Scott, 1988). In a long-term marital relationship, a survivor’s spouse is
typically the closest family member and as a result plays a signiﬁcant role in care taking
and post-stroke adjustment (Glass, Matchar, Belyea, & Feussner, 1993; Evans, Bishop, &
Haselkom, 1991).

Schumacher (1995) proposed that a role change in one family member elicits
reciprocal changes with other family members. For example, if a survivor requires post-
stroke care a family member, most likely a spouse will assume the role of caregiver
(Hartke & King, 2002; Schumacher, 1995). Within the marital dyad, chronic disability
often demands immediate renegotiation or the assumption of different roles. Spousal-
caregivers must assume not only their own responsibilities but also those of the stroke
survivor. A spouse’s ability to effectively cope with the demands of care—giving is linked
with the extent and nature of role strain necessitated by the survivor’s post-stroke
functional limitations (Beach, 1993). As a chronic illness continues or during periods of
exacerbation, role demands may increase and force the caregiver to discontinue
participation in other activities.

The role of a caregiver is complicated and challenging with competing
responsibilities to assume. The ability of a couple to effectively adapt following a stroke

has been directly linked to the degree of role changes required (Beach, 1993). Frequently,

3O

a carcgiver’s life takes on a new focus and change in structure from the previous lifestyle
(Schumacher, 1995). The willingness and ability of a spouse to provide supportive care
for the stroke survivor has a direct impact on whether a survivor is able to return home
rather than remaining in a medical institution (Anderson et. a1. 1995; Draper, Poulos,
Cole, Poulos, & Ehrlich, 1992). The caregiver commitment may be emotionally and
physically difﬁcult for the survivor’s spouse as post-stroke consequences often
necessitate comprehensive and long-term care. A spouse-caregiver may attempt to care
for the survivor to the detriment of his or her own health. Caregiver depression can
render spousal care providers incapable of proving requisite medical care, consequently
decreasing the quality of life for both partners while the presence of a spouse may ensure
higher quality of care for the survivor, it does not necessarily correspond with the
caregivers well-being (Parrnelee, 1983).

In studies of breast cancer patients, spouses typically serve as the primary
caregiver (Manne, 1994) and were relied upon by the survivor for emotional and tangible
assistance including management of medication, transportation assistance, and provision
of companionship (Barker & Lemle, 1984; Primomo, Yates, & Woods, 1990).

The marital relationship is inescapably altered due to the shift in roles,
responsibilities, emotional balance, and complementarity. Shifting ﬁom an intimate
marital relationship to a caregiving and care receiving relationship is a signiﬁcant
challenge. If the marital relationship is further compromised by the survivor’s inability to
attend to personal activities of daily living and self-care, marital boundaries require

redeﬁnition. For example, changes in sexual intimacy between couples as a result of

31

chronic illness may necessitate partners to redeﬁne the relationship ﬁ'om lovers to
companions.

Couple’s who were sexually active prior to a stroke are likely to continue to be
interested in sex, however may not be able to engage in sexual activities without physical
and emotional renegotiation (Brocklehurst, et al., 1981; Williams, 1993). Post-stroke
weakness or paralysis, required medication regimen, inability to effectively
communicate, and loss of sensation or body awareness can interfere in a couple’s sexual
relationship. Additionally, continence is a principal measure of dependence and
elucidates the severity of post-stroke disability (Brittain, Peet, & Castleden 1998). If a
stroke survivor is rendered incontinent, his or her spouse will likely become responsible
for basic hygiene, changing, dressing, and toileting further compromising the previous
roles as husband and wife. Survivors often feel frustrated and humiliated, resulting in
reduction of self-esteem and furthering the restoration of their pre-stroke sexual life. It is
not uncommon for sexual desire to drastically decrease due to the energy expended
during care taking and during the survivor’s attempts to acclimate to daily activities
(Hart, 1986). Resuming a sexual relationship after a stroke may require renegotiation and
consideration of alternative techniques.

In an effort to regain control or compensate for loss, survivors may react angrily
or feel resentful towards his or her caregiver. Fortunately, this struggle can be used as a
catalyst for change, personal growth, and can foster closeness in the marital and family
system as shifts in roles, power and responsibilities arise. Ascribing new deﬁnitions and
meanings to relationship-adjustments can be mutually created in the context of marital

communication.

32

Meaning Ascribed to Illness

Theories on stress, coping, and adaptation to an illness or chronic medical
condition suggest that the subjective appraisal and interpretation of the implications has a
signiﬁcant impact on coping responses and outcomes. As a couple begins to appraise
the post-stroke consequences and examine the resultant imposed restrictions, they
may have to re-negotiate and re-deﬁne their personal identities that have been shaped
over the course of their life time both separately and together (Campbell, 1986). Within a
long-term marital relationship, couple’s form personal deﬁnitions, identities, and
expectations of their relationship (Schultz, Thompkins, & Rau, 1988). Marital patterns
are unconsciously deﬁned and shaped over long periods of time and only become
problematic when challenged by a major event or crisis. For example, in a long-term
marriage, post-stroke consequences often necessitate the redeﬁnition and renegotiation
of established patterns and interpersonal behaviors, compelling the couple to construct a
mutually acceptable meaning of the stroke.

The ecological environment in which the couple interacts reciprocally affects the
deﬁnition or meaning ascribed to an illness. Social culture and social networks are
formed and deﬁned by both marital and individual experiences. The meaning ascribed to
illness is shared and negotiated in everyday interactions and it is deeply embedded in the
social environment (Atwood, 1996). The social culture and the social networks shape and
are shaped by the individual's experiences.

In past research, the extent of post-stroke disability was purported to be the
determining factor in a survivor’s ability to adjust (Sagy, 1990). However, there is

increasing empirical evidence suggesting that adjustment to disability is multifaceted and

33

incorporates not only the physical repercussions but also personal and family changes
(Antonovsky, 1987). Accordingly, current literature on disability and health outcomes
suggests an emergent need to explore psychological and social factors that distinguish
individual differences in the ability to cope when faced with a disability. There is a
growing interest in elucidating the formidable inﬂuence of the (SOC) and an individual’s
ability to adapt when faced with a disability by perceiving it as manageable and
consequential (Trieschmann, 1980).
Sense of Coherence

Returning home following a stroke is likely to generate stress and anxiety. A wide
range of issues inﬂuence emotional and physical coping however, it is believed that
internal psychological resources account for individual differences in the ability to
effectively coping with faced with a chronic disability. The psychological resources
include: individual personality, personal history, meaning ascribed to disability, pre-
stroke level of family cohesiveness, and social factors (Thompson, Sobolew-Shubin,
Graham, & J anigian, 1989). Antonovsky (1987), asserts that an individual’s sense of
coherence (SOC) is psychological and consequently a social factor that intercedes
between personality and health outcome. An individual’s (SOC) suggests the way in
which the world is perceived and shapes unique coping styles when faced with complex
and challenging situations (Badura, 1985; Cella, et al., 1988). With in the (SOC)
framework, elucidation of subjective differences in coping and adapting to a medical
crisis will be explored. Examining the (SOC) of spousal caregivers may aid clinicians is
identifying and supporting speciﬁc variables that correlate to successful post-stroke

adaptation in middle-age married couples.

34

Chapter Three explicates the logistics and outlines the qualitative methodology
utilized in this research study. It also provides a detailed account of the data collection

and analysis.

35

Chapter 3
METHODOLOGY
Rationale for Qualitative Methodology

Qualitative research is an interactive and transformational process involving close
contact and interaction with the researcher, research participants, and the data.(Sword,
1999). Although, quantitative research provides an understanding of general trends and
information, qualitative methods provide a more speciﬁc and greater understanding of a
phenomenon (Gerhart, Ratliff, & Lyle, 2001). Qualitative research affords the researcher
in—depth descriptions and explanations to the process of events in a contextual setting
(Miles & Huberrnan, 1994.)

Although the participating post-stroke couples may have had similar post-stoke
experiences, the individual stories captured the most meaningful aspects for each couple
and revealed the unique characteristics across stories. These stories may become an
anchoring source for stroke survivors, spousal caregivers, and their families as a whole
(White & Epston, 1990). The use of qualitative methodology potentially enhances
understanding of speciﬁc ecosystemic factors that can contribute to the couples’
construction of meaning around the stroke and the impact ascribed to their couple
relationship. It could also provide an opportunity to make sense of the post-stroke process
individually and in the context of their marital relationship (Alldred, 1998).

According to Van Manen (1997), individual experiences, processes, perceptions,
assumptions, and meaning ascribed to speciﬁc events are the primary emphasis of a
qualitative research study. By not condensing human experience, interactions, and themes

into quantiﬁable and testable data, the intrinsic value of human-relational phenomenon

36

increases the intrinsic value of human-relational phenomenon. Furthermore, it allows the
value and signiﬁcance of subjective meanings and the reciprocal ﬂow of human
experiences, fundamental in family system studies to be appreciated (Gilgun, 1992;
White & Epston, 1990). Utilizing a qualitative research approach allowed the researcher
to examine, identify, and understand, the individual post-stroke perceptions and
experiences of middle—age couples in long-term marriages without reducing the process
to scientiﬁc inquiry or empiricism (Miles & Huberman, 1994) or reducing these
experiences to quantiﬁable “truths” (Schnitzer, 1993). Ecosystemic factors were also
identiﬁed and examined to determine how these systems facilitated or impeded
successful post-stroke adaptation. Further, this research will examine how these systems
speciﬁcally contributed to the couples’ sense of successful post-stroke adaptation
concerning the couple relationships themselves (Marshall & Rossman, 1995.)

Growing interest and research in the ﬁeld of marriage and family theory has
increased the preference and utilization of qualitative research methodology (Doherty,
Boss, LaRossa, Schumm, & Steinmetz, 1993; Sprenkle & Moon, 1996). Fundamental
beliefs and knowledge about a stroke event is a collective socio-cultural construct of the
survivor and caregiver (Atwood, 1992). Individual post—stroke experiences and stories
will be examined, in particular, meanings and themes reﬂecting social contextualization
of ideas and individual perceptions (N ewﬁeld, Sells, Smith, Newﬁeld, & Newﬁeld,
1996).

The post-stroke meaning ascribed by participants was based on participating
couple’s collective contextual or cultural experiences (Gergen & Davis, 1985) and

perception of reality constructed from personal experiences and close relationships (Franz

37

& White, 1985). By storying individual experiences and perceptions collectively and
individually, couples identiﬁed their separate beliefs regarding the impact of a stroke, the
affect on their couple relationship, and the desired changes in response to the stroke.

Employing grounded theory methodology to collect and analyze subjective data
from post-stroke couple’s was expected to generate emergent themes and patterns
essential to theoretical development (Strauss & Corbin, 1990; Glaser & Strauss, 1967).

Grounded Theory

Grounded theory methodology narrows the disparity between qualitative and
empirical research and is considered to be of equal value (Glaser & Strauss, 1967).
According to Sprenkle and Moon (1996, p. 66), Grounded theory was developed for the
purpose of closing “the embarrassing gap between theory and empirical research.”
Grounded theory is a qualitative research method, in which theory is developed by
blending interpretations of phenomena and conceptions from these interpretations with
existing theory and research (Glaser & Strauss, 1967). Moreover, it is considered more
reliable in research studies where multiple methods are used to collect and analyze data
(Lincoln & Guba, 1985). Data is collected ﬁom a number of sources, including direct
observation, recorded interviews, ﬁeld notes, and audio taping (Strauss & Corbin, 1990).
As data is collected and analyzed, it is compared and modiﬁed against relative empirical
ﬁndings using an empirical iterative approach (Strauss & Corbin, 1990). In grounded
theory, collecting and analyzing data is a continuous and closely linked process
throughout the entire research endeavor (Strauss & Corbin, 1990). As data is collected
and analyzed, it is constantly coded, re-coded, compared, reintegrated, and evaluated for

interrelationships. Consequently, researchers are able to detect and report emerging

38

patterns at the onset of data collection. As themes and patterns emerge, data is separated
into categories by meaning and interpretation, which leads to theoretical development
(Hoshmand, 1989).

Narrative stories of a particular phenomenon are static interpretations from an
individual’s subjective perception. These stories are also a relative explanation based on
individual assumptions and contextual inﬂuence. During the data collection and analysis
process, similarities and differences among participants were examined and categorized
accordingly. Features and relationships of each category were then compared with other
emerging patterns until theoretical saturation was reached and three primary classes of
data emerged (Strauss & Corbin, 1990). Theoretical saturation occurred when data
collected failed to generate new information (Strauss & Corbin, 1990).

Grounded theory research focuses on conceptual relationships inferred through
assimilation and relevance rather than speciﬁc description and evidence as proof (Glaser,
1978). Grounded theory provided the most effective means to gather and analyze
complex phenomena and was expected to contribute to the global understanding of
individual post-stroke experiences and its inﬂuence on reality construction (Patton,
1990). As data were collected, analyzed, and substantively categorized, more speciﬁc and
directive research questions were generated.

Successful post-stroke adaptation is a function of family system concepts that
relate to all couple relationships including, pre-marital quality, individual perceptions and
experiences, communication skills, and trust. In addition, successﬁrl adaptation will
reﬂect other issues relating to sense of coherence (SOC), and social contructionism both

individually and collectively.

39

Language is considered to be a primary source for interpreting and
comprehending the way in which individuals construct reality and ascribe meaning in
their lives. As such, language is best understood when examined in the environment
where it naturally occurs (Newﬁeld, et al., 1996). Attending to the language of long-term
married partners in their natural environment provided insight into the personality
dispositions and sense of coherence (SOC) of both spouses. Language analysis provided
valuable insight into the construction of familial themes and patterns. Through language,
including appreciative interview questions, the researcher co-creates meaning, metaphors,
and the direction of stories.

Case Study

As interest in qualitative research methods has increased, so has the use of case
study research (Merriam, 1988; Moon, 1991). Case study research is well suited for a
comprehensive analysis of small, criteria based sample (Anderson, 1990; Hamel, 1992;
Miles & Huberrnan, 1994; Moon, 1991). It offers the researcher ﬂexibility to focus on
generalizations, rather than testing speciﬁc hypothesis or conﬁrming statistical evidence
(Firestone, 1993; Lincoln & Guba, 1990; Yin, 1989).

Researchers can examine multiple cases and explore commonalities or differences
in themes while learning more and generating hypothesis about a speciﬁc case. Case
study methodology includes both formal and informal case studies. For the purposes of
this research study, an informal case research approach was appropriate. Informal case
study research is often used in studies with a small sample size, providing the researcher
greater contact with each participant and increasing the likelihood of discovering unique

and relative information (Sprenkle & Moon, 1996).

40

Researcher as Instrument

In a grounded research study, the researcher is the primary instrument, both
collecting and analyzing relevant data. Grounded theory provided a methodological
means to analyze verbal representations while providing theoretical value to the
exploration of subjective phenomena.

Social constructionism and narrative theories support a non-judgmental and co-
created position. Through personal semi-structured interviews the researcher will
collaborate with participants and co-created implications, descriptions, and focus
individual stories. Listening to the stories of post-stroke couples allows the researcher to
glean information that may increase understanding and normalize other post-stroke
couple’s experiences and generate ideas for effective interventions and treatment
strategies.

Interview Questions and Objectives

One purpose of conducting a qualitative research study is to examine a
phenomenon that is considered unique or novel, allowing the researcher to distinguish
signiﬁcant factors and generate hypothesis for future theoretical development. In this
research study, the post-stroke adaptation process of middle-aged long-term marriage
couples was explored. More speciﬁcally, couples in which one partner suffered a stroke
within the past 7 year period. Additionally, speciﬁc ecosystemic factors were examined
to determine if there was a connection between these factors and the couple’s ability to
successfully adapt following the stroke event.

According to Marshall and Rossman (1995), formulating relative research

questions while remaining open to new concepts is a challenge. In grounded theory,

41

research questions begin broadly, allowing for general responses and providing the
researcher with the “bigger picture” (Fetterrnan, 1989). An explorative approach was
utilized to obtain each participant’s subjective post-stroke experiences for the purpose of
understanding their unique experiences and to generate a hypothesis for future research
(Marshall & Rossman, 1995). Interview questions remained ﬂexible throughout
participant interviews and became more speciﬁc and concentrated as unique concepts
began to emerge (Taylor & Bogdan, 1984). The speciﬁc research questions were guided
by theoretical frameworks and existing literature regarding adaptation in long-term
married couples faced with an unexpected medical crisis (described in Chapter Two).
The purpose of the interview questions was to guide participants to tell their story. Figure
1.3 is an illustrative representation of the research questions that guided this study and the
corresponding interview questions. hr addition to the use of a semi-structured interview
generated directed guided by speciﬁc research questions a narrative method was used.
This method was loosely guided by a set of interview questions that were used to elicit
couple’s stories about their own post-stroke experiences and perceptions. In order to
construe meaning of the couple’s experience, an interpretive mode of inquiry was
utilized.
Procedure
Sample

In qualitative research, the goal is not to select a large or random sample, rather
one that will provide data that is both rich and comprehensive (Fetterrnan, 1989). Sample
selection is dictated by explicit criteria and directed by the research questions and the

researchers suppositions (Goetz & LeCompte, 1984). Although speciﬁc sample sizes are

42

not mandated, a sample must be sufﬁcient to reach data saturation (Marshall & Rossman,
1995).

Due to detailed and in-depth data expected from each participant, a small and
purposeful sample met this criterion (Newﬁeld, et. al., 1996). The participating sample
included 8 post-stroke couples, of which 50% were female stroke survivors and 50%
were male stroke survivors. Additional inclusion criterion was as follows:

a. Participants are 50 and older (middle-age)

b. Participants have been married for no less than 10 years.

c. Participants have no children living at home.

(1. The stroke survivor was manied to the same spouse at the time the stroke
occurred and at the time this study is conducted.

e. Survivor suffered a stroke with in the past 7 years.

f. The survivor experienced only one stroke.

g. Each couple reported successful adaptation following the stroke event.

Sample Acquisition and Recruitment

Participants were recruited from a stroke support group sponsored by a medical
rehabilitation hospital in a large mid-west city. This rehabilitation facility has a large
contingency of stroke survivors and a long running support group designed for stroke
survivors, his or her spouse or signiﬁcant other. The purpose of the support group is to
provide support to post-stroke couples and facilitate adjustment and adaptation following
a stroke.

The stroke group coordinator was initially contacted as a means of informing
members about the study and to invite participation. Permission was granted by the

coordinator and a description of the study and participation criterion was posted in a

43

monthly newsletter generated by the rehabilitation facility. If a couple was interested in
participating and met the inclusion criteria, they were asked to provide their names and
contact information which was then forwarded to the researcher by the group coordinator.
Data Collection
Interview Process

In qualitative research, personal interviews are considered an effective means for
collecting in-depth subjective information (Kerlinger, 1986). Conducting a personal
interview allowed the researcher to clarify participant’s response and further probe for rich
and comprehensive data. Prior to scheduling personal interviews, participants were contacted
by telephone to verify participation eligibility and conﬁrm their interest in the research study.

Before each interview commenced, participants were asked to read and sign a consent
form that provided a written comprehensive description of the research objectives and
interview process. Participants were also asked for permission to record the interview via a
tape recorder provided by the researcher. Additionally, they were encouraged to ask
questions or express concerns in an effort to avoid any negative psychological consequences
in terms of participation (Boss, Dahl, & Kaplan, 1996).

Participants were informed that the objective of an in-depth interview was to collect
descriptive data regarding individual perceptions, experiences, and meaning ascribed to the
stroke event, examine the systemic inﬂuences that informed their narratives regarding their
successful post-stroke adaptation, and to consider the meaning they ascribed to the stroke
impact on their couple relationship. Additionally, obtaining a detailed history of each
partner’s post-stroke feelings, experiences, attitudes, and perceptions provided an Opportunity

for the researcher to personally understand each participant’s experience. Interviewing each

44

partner separately was expected to increase the likelihood of freedom of expression and
allow the researchers to detect individual disparities and similarities.

In an effort to address the research questions, the interview focused on meanings
ascribed to the stroke, sequence of events, relationships, and feelings. The average length
each interview was 2.5 hours and was essentially divided into three parts. Participants were
interviewed in their homes at a pre-arranged date and time. Initially, couples were
interviewed together while preliminary demographic data was collected. The stroke survivor
and his or her spouse were then interviewed separately and encouraged to explore their
personal perceptions and meaning regarding ecosystemic inﬂuences, social support, marital
inﬂuences, individual attributes, and the impact of the stroke on their marital relationship.

An interview guide was utilized to aid the researcher (Miles & Huberrnan, 1994)
and to insure general consistency and structure throughout interviews, while allowing the
informants to tell their stories from a personal perspective. Semi-structured interviews
allowed for unanticipated changes in direction, ﬂexibility, and adjustment of interview
questions as necessitated by the individual participant. Stories developed as the
researcher asked speciﬁc questions, placed the individual and story in context, and
insured anonymity of the inforrnant’s story.

The ﬁrst portion of the interview included speciﬁc interview questions related to
environmental factors that they felt contributed to their successful adaptation process.

Each participant was also asked to describe their couple relationships prior to the stroke
event, during the acute phase following the stroke, and at the present time. They were
asked to consider any personal characteristics that contributed to their individual ability

to adapt and what role their marital relationship played in their successful adaptation.

45

They were also asked to describe the type of social support they found to be helpful or
unhelpful. Finally, participants were asked to consider the impact of the stroke event on
their current couple relationship. This portion of the interview relied heavily on each
partner’s construction of his or her personal narratives with the researcher guiding the
progression of the interview.

An open-ended interview was conducted with each couple both conjointly and
individually. Minimal prompts and open-ended questions were employed as needed. The
researcher also documented and kept ﬁeld notes to recall speciﬁc and noteworthy details
of each interview and to document non-verbal behavior that might have been overlooked
while listening to each recorded interviews. At the conclusion of the interview, a
summary sheet was completed to note speciﬁc and emerging themes or patterns among
participants. The summary sheet provided information useful in the construction of initial
premises to be explored in subsequent interviews.

In an effort to triangulate date, thus increasing reliability, (Newﬁeld, et al., 1996),
participants were asked to create ecomaps illustrating their primary environmental
systems. The researcher explained the process and purpose of completing the ecomap and
provided a general overview using open ended semi-structured questions and prompts as
necessary to insure the inclusion of relevant systems. These systems included nuclear and
extended family networks, friendships, social support, religion, and work. The majority
of the participants completed this exercise with little prompting. The researcher drew the
circles and directional arrows representing relevant systems as described by each
participant. Each informant was asked to describe and explore the speciﬁcs inﬂuences in

each system that either facilitated or hindered successful their post-stroke adaptation

46

process. Primary environmental systems that emerged within participants’ shared
experiences were used to categorize data into codes and from participant’s shared
experiences within each system themes were developed.

Data Analysis

The purpose of this study was to identify ecosystemic and social inﬂuences that
contributed to successful post-stroke adaptation in middle-aged long-term marriages. In a
qualitative research study, data analysis is a continuous process that begins with the
initial participant contact and continues through the entire data collection and coding
process (Miles & Huberman, 1994). The data from the tape-recorded interviews was
transcribed verbatim and analyzed through grounded theory methodology (Glaser &
Strauss, 1967; Miles & Huberman, 1994; Strauss & Corbin, 1990.)

To become familiar with the data, the researcher reviewed participant interview
transcripts, eocmaps, and ﬁeld notes repeatedly over the course of several weeks (Miles
& Huberman, 1994). After completing participant interviews and through constant
comparison of the interview transcriptions, the researcher determined that the data had
become saturated and the data collection process was complete at that point.

One of the primary beneﬁts of recording participant interviews was that it allowed
the researcher to listen as many times as necessary to capture the themes, patterns, and
meanings of each participant’s story. This method of data collection insured accurate
representation of the participant’s motives, beliefs, attitudes, and knowledge source of the
post- stroke phenomena (Cicourel, 198 7). In grounded theory research, a constant
comparative approach is used to identify concepts and categorize data to provide a

structured framework for organizing data. This method of analysis is systematic but

47

allows for both ﬂexibility and adjustment. Throughout the coding process, descriptive
and pattern coding were employed by the researcher (Miles & Huberman, 1994.)
Coding Process

In qualitative research, coding provides a means to organize and integrate data
while simultaneously interpreting meanings. Miles and Hubennan (1994), described
codes as the identiﬁcation and compartrnentalization of conceptual and descriptive data
assimilated throughout a research study. Data coding insures accuracy and efﬁciency
throughout the data collection process and expedites data analysis. The coding process
began with broad concepts and patterns conceptualized by the researcher throughout the
interview process. Miles and Huberrnan (1994) suggest that looking for themes across
multiple cases clariﬁes and deﬁnes emerging patterns.

Constant comparative methods (Marshall & Rossman, 1995) in addition to
domain analysis and componential analysis (F etterrnan, 1989) during the entire data
collection process resulted in the emergence of speciﬁc categories and themes. Following
each interview, data was reviewed, organized, and integrated into existing data and
eventually separated into three main classes of data, corresponding to each research
question. The salient themes are displayed in Table 3.1 and in narrative form in Chapter
4.

As data was analyzed, it was separated into different classes differentiated by
different colored highlight markers. Data ﬁom each class was copied to three different
computer ﬁles, separated by primary data classiﬁcations. As open coding began, each ﬁle
was printed and analyzed using a line-by-line descriptive approach (Strauss & Corbin,

1990). Concepts from both the ecomaps and ﬁeld notes were similarly coded and

48

compared. The ecomaps and narratives were coded likewise and comparisons were made
between the two in order to generate a comprehensive and unduplicated list of categories.
Based on the literature review, predetermined categories were established and guided the
research process. Other categories also emerged throughout the study (Altheide, 1987).
Following categorization and coding, relevant data was printed under a corresponding
heading in a computer ﬁle. These ﬁled categories were used for the next stage of coding
which identiﬁed patterns that emerged under each code. These patterns eventually
revealed relevant themes that emerged from the data. Cross-case patterns were identiﬁed
and assembled as informal data displays for the purpose of keeping the data organized.
The themes were then added to the computer ﬁles under the appropriate corresponding
codes. The ﬁnal coding frame was assembled as a chart to assist with the narrative
discussion of the result and to allow for a comprehensive presentation of the data. Table

3.1 represents the ﬁnal coding frame and emergent themes from each code.

49

 

Table 3.1

 

 

 

 

 

 

Final Coding Frame
Class Code Theme
Ecosystemic Inﬂuence on Perception of Medical Ability to Ask Questions and
Post-Stroke Adaptation Experience Receive Information
Involvement in Medical
Care
Positive Experience in
Medical Rehabilitation
Failure to Receive Tissue
Plasminogen Activator (tPA)
Eroding Autonomy
Aspects of Social Support Family Involvement
Congregational Support
Sense of Coherence Psychological and Emotional Ability to Overcome
Inﬂuence Depression Related to Post-
stroke Disability
Tenacity/Perseverance
Philosophical Spiritual Belief
Social Constructionism Successful Post-Stroke Individual Perception of
Adaptation Stroke Experience on their
Couple Relationship

 

 

 

50

 

Trustworthiness

As with any research study, establishing trusting relationships with participants
through honesty and respect is essential. Due to the anticipated small sample size,
conﬁdentiality was a signiﬁcant issue. Use of pseudonyms and altering demographic
information in addition to advising informants that they may withdraw at any time during
this study, may have provided informants the incentive and privacy needed to participate.

It was imperative that individuals participating in research studies are protected
from undue risk or exposure to harm. In accordance with university policy, appropriate
documentation was submitted to the University Committee on Research Involving
Human Subjects (U CRIHS) and standards such as strict conﬁdentiality were upheld
throughout the data collection and analysis (see Appendix D).

Validity and Generalizablity

The validity of a qualitative research is contingent upon the thoroughness and
expertise of the researcher. Collecting data from multiple sources to understand a
speciﬁc phenomenon increases the likelihood of accumulating corresponding and
accurate data (Patton, 1990). The validity of qualitative research is also increased and
strengthened by triangulation (Miles & Huberman, 1994). Triangulation is a process that
is used to further support research validity by consulting multiple sources or repeating
interviews with one source (Fetterman, 1989). This occurred through observation,
reading the interview transcripts multiple times to insure descriptions and perceptions are
accurately captured, personally transcribing the interview, multiple coding, directly
quoting informants, and use of eco-maps (Alldred, 1998). Becoming very familiar with

the data is a type of “soaking” or data saturation, which also increases research validity.

51

Furthermore, the validity of reported ﬁnding in qualitative research is improved to the
extent that the ﬁndings are not inﬂuenced or distorted by researcher interpretation (Hare-
Mustin, 1994).

Researcher 's Role and Ethical Considerations

A qualitative researcher becomes the primary research instrument when he or she
acknowledges that an objective or disinterested researcher is non-existent (Boss, et al.,
1996). Grounded theory research methods are both interpersonal and personal as in-
depth exploration is required when examining a speciﬁc phenomenon as well as the need
to explore the ﬁmdamental components within the participant’s natural environment. Due
to the subjective nature of story telling, it is suggested that the researcher assure
participants that the data collected will be kept conﬁdential and their identity will remain
anonymous.

In grounded research, it is important that the researcher clearly and explicitly
explain the participant’s right to withdraw from the study at any time without
consequence while also respecting the personal nature of the research environment,
usually the participant’s home, and role of the researcher as an unfamiliar entity (Gilgun,
1992; Olson & Sprenkle, 1976). It is important that researchers remain self-aware,
empathic, ﬂexible, and reﬂexive while reﬂecting on the speciﬁc content and process of
the participant’s story (Gale, 1996). Attention to researcher reﬂexivity is essential to
maintaining reliability in qualitative research. Researchers inevitably interpret data
through personal suppositions and predetermined assumptions. Due to a personal
awareness of care-taking tendencies, it was important that during the participant

interviews, the researcher did not interj ect either empathetically or sympathetically or ask

52

superﬂuous questions that may have lead participants away from the speciﬁc research
questions.
The ﬁndings and salient themes of the participating couple’s responses are

detailed in Chapter Four.

53

Chapter 4
RESULTS AND DISCUSSION
Overview

In Chapter 4, results ﬁom this research study are integrated with existing
scholarship. Research conclusions, clinical implications, and recommendations for future
research are found in Chapter 5.

The primary objective of this research study was to explore the inﬂuence of
ecosystemic factors, social constructionism, and sense of coherence on successful
individual post-stroke adaptation and the impact on middle-age long-term marriage
partners. Speciﬁcally, this study examined the factors that each participant considered to
be helpful or unhelpful in his or her ecosystemic environment, the inﬂuence of individual
sense of coherence in relation to post-stroke adaptation, and ﬁnally, the meaning ascribed
to the stroke event on their long-term couple relationship.

Through narrative inquiry, participants were encouraged to explore and story their
personal post-stroke processes and ascribe meaning to their experience. This project
allowed long-term married couples to appreciate and examine their individual perceptions
regarding the impact of the stroke on their couple relationship. Furthermore, a narrative
approach provided participants the opportunity to make sense and story their post-stroke
process within the context of their personal experiences and perceptions.

In a qualitative research study, the parameters and speciﬁc focus of data
collection are pre-determined by the researcher prior to the onset of data compilation. The
structure of a research design is based on the researcher’s preference and research goals.

For example, the degree to which participants are required to adhere to the speciﬁc

54

content of a research questions, is directly linked to the level of control desired by the
researcher (Miles & Huberrnann, 1994). Adhering to a tightly structured research design
characteristically produces data that is manageable, straightforward, and more easily
analyzed. However, a tight design may preclude the formation of rich and signiﬁcant data
related to an individual’s post-stroke experience, process, and perception and in direct
contrast with the primary tenet of qualitative research, which seeks obtain data that is
rich, comprehensive, and reﬂects social contextualization (F etterrnan, 1989). In
comparison, a loosely structured research design is likely to produce a surfeit of data and
may guide the researcher to additional insights. However, a less structured design could
potentially produce an excess of superﬂuous information, ultimately complicating data
coding and ﬁnal analysis.

In an effort to maintain both balance and ﬂexibility, a semi-structured interview
was conducted and based upon the research questions and conceptual maps. A semi-
structured interview approach allowed for unanticipated changes in direction and
adjustment of interview questions as necessitated by the individual participant. Broad
questions were initially posed; providing participants the freedom to elaborate to the
extent necessary to appreciate their post-stroke experiences and create personal meaning.
The interview relied heavily on the each partner’s construction of their individual
narratives with the researcher guiding the interview progression as needed with minimal
prompts and open-ended questions. As the interview progressed, more speciﬁc and
directive prompts were used to insure that speciﬁc areas of inquiry were addressed.
Additionally, depending on the nature and extent of the survivor’s cognitive impairment,

additional clariﬁcation and interview direction was offered.

55

Within this chapter, basic demographic data regarding the research participants
will be described and salient themes from each interview will be presented. As indicated
in Chapter 3, interview questions were formulated in direct relation to the research

questions set forth in Chapter 1.

56

Demographic Data

This chapter will provide a basic demographic depiction of the research
participants and set forth the salient themes of each interview. The research sample was
solicited and recruited from an established post-stroke support group located in a large
mid-west metropolitan area. Participants that were interested and fulﬁlled the inclusion
criteria were asked to provide their name and contact information to the group
coordinator with the agreement that this information would be forwarded via e-mail,
directly to the researcher. Due to the nature and sensitivity of this topic, the research was
designed to recruit and select sample participants from a renowned rehabilitation program
for treatment of stroke survivors. Consequently, anonymity and conﬁdentiality was a
relevant concern. In deference to participant’s conﬁdentiality, speciﬁc names have been
replaced with pseudonyms and other identifying demographic information altered or left
out.

The selected sample was comprised of eight married couples; four (50%) couples
consisted of male stroke survivors and four (50%) female stroke survivors, together with
their spouses. One member of each couple had experienced a major stroke event within
the past seven years (1998 — 2005). The initial inclusion criteria required a post-stroke
period less than ﬁve years. However, this speciﬁc criterion was modiﬁed to attain gender
equality; the post-stroke period was increased to 7 years. Participants were Caucasian
with the majority middle to upper socioeconomic status. The participants ranged in age
from 50 to 70, (M = 61). The male stroke survivor ranged in age from 50 — 66, (M = 62),
and female stroke survivors ranged from 58 - 65, (M = 62). The post-stroke period was

(M = 4.6) years.

57

The majority of stroke survivors were at home at the time the stroke occurred and
immediately pursued emergency medical care. All stroke survivors were hospitalized for
a period of time in varying lengths based upon the severity of the stroke. The average
inpatient hospitalization period was approximately two weeks. Subsequent to being
discharged from an acute care facility, each stroke survivor was admitted a rehabilitation
hospital re-known for post-stroke psychosocial care. Furthermore, each stroke survivor’s
spouse was directly involved and played an integral role in both the medical and
rehabilitation system.

For the purpose of coding, a semi-structured interview, guided by speciﬁc
research questions, was conducted with each participant. In addition to the recorded
interview, ecomaps were created to depict the primary systems in which participants were
embedded including extended family, social, religious, occupational, and recreational
networks. Each interview was transcribed verbatim and analyzed conjointly with
individual ecomaps for the purpose of strengthening the research process through
triangulation (Miles & Huberman, 1994).

Each class of data is presented sequentially in terms of the principal themes that
developed, followed by a brief description. A pictorial synthesis has also been included
in Table 1, Chapter 3. The codes and themes identiﬁed within each major data
classiﬁcation are listed in Table (1). Direct quotes are included to exemplify the
relevancy of participants’ responses that contributed to the development of each data
classiﬁcation. Due to the relatively small sample size and homogeneity of the recruitment
source, conﬁdentiality was a cogent concern. Responses that could be linked to speciﬁc

participants were collapsed with similar responses, conveying the main theme while

58

maintaining anonymity. Furthermore, to preserve the conﬁdentiality of participants
stories, all references to speciﬁc genders will appear as a bi-gender reference, for
example, “he” is referenced as “he/she” and “her” as “her/him.”

Through recurrent analysis, three major data classes emerged. The initial data
class was deﬁned as, the Ecosystemic Inﬂuence on Post-Stroke Adaptation. Within this
primary data class, the three prominent codes were identiﬁed. The speciﬁc codes are as
follows: Perception of Medical Experience, Aspects of Social Support, and Inﬂuence of
Marital Relationship in regard to post-stroke adaptation. Data analysis will focus on

individual and couple interactions in relation to these codes.

59

Inﬂuence of Ecosystemic Factors in Post-Stroke Adaptation

Human and family ecology served as the underlying background and guiding
framework for this research study and provided an effective method in which to explore
external ecosystemic inﬂuences on successful post-stroke adaptation. Bronfenbrenner’s
theory of human development suggests that individuals operate, reciprocally, within
several distinct, yet interconnected, environments making it impossible to separate any
part from the whole. It was these interactions that inﬂuenced post-stroke adaptation and
the perceived impact on speciﬁc couple relationships.

The ﬁrst research question asked: How do aspects of the ecosystem inﬂuence
adaptation for each partner? This interview question provided a means to explore and
identify inﬂuential ecosystemic factors within various environments. The speciﬁc
ecosystemic inﬂuences were the primary interest within this class. The primary
environmental systems identiﬁed were used to categorize data into speciﬁc codes and
through participant’s shared experiences within each system, subsequent themes were
developed.

Code: Perception of Medical Experience

Empirical evidence demonstrates that providing medial information to patients,
signiﬁcantly increases patients understanding, perception of control, and future
prognostic expectations (Brody, Miller, Lerman, Smith, & Caputo, 1989). A patients’
perception of medical care and quality of life has been consistently linked to physicians’
ability to offer and provide relative medical information. The following themes were
identiﬁed as inﬂuential ecosystemic factors that facilitated or impeded individual post-

stroke adaptation.

6O

Themes:

1) Ability to Ask Questions and Receive Answers

2) Involvement in Medical Care

3) Positive Experience in Medical Rehabilitation
Theme: Ability to Ask Questions and Receive Answers:

Due to the ambiguous and unpredictable post-stroke prognosis, all participants
reported extremely high levels of stress, fear, and sadness, particularly during the period
immediately following the stroke. The diagnosis or occurrence of a serious or life
threatening illness is considered to be a signiﬁcant and feared threat to any family system
(Holmes & Rahe, 1967). The lack of concrete information in addition to the
indeterminate outcome was a major source of stress for a number of participants and
other family members.

The ability to ask questions and receive information from attending medical staff
emerged as a common theme that contributed to each participant’s perception of their
medical experience. One spouse stated, “I always asked lots of questions and read a lot.
The doctors were respectful to me and I felt like I was included in the care program the
majority of the time.” Another stated, “I had so much more conﬁdence in him/her
medical care after having a lengthy conversation with the neurologist. I felt like he was
really listening and took my concerns seriously. That made me feel so much better and so
much less anxious.”

Several participants’ referenced conversations with their treating physicians,
immediately following the stroke, and recalled that when the doctor took time to talk

directly to them, rather than simply “checking Vitals”, their anxiety levels reportedly

61

decreased. Rather than the conventional “diagnose and refer”, a common managed care
approach, taking time to meet with family members and answer questions provided an
opportunity for medical personnel to discover familial resources and other information
and may help them to normalize what the family is experiencing. Several participants
recounted that although the emotional and mental stress was “enormous” he/she felt more
encouraged and optimistic after the doctor spent time with the survivor’s family
answering questions and listening to concerns “I asked the doctor a million questions as
soon as he came in the door. He explained things, and even if he came in really early in
the morning he always woke me up and would tell me what was going to happen today.”
Other participants expressed appreciation for the nursing staff as the nurses kept them
“updated” on the medical care of the survivor particularly when diagnostic testing was
ordered. “I felt like I could ask the nurses questions and could usually get a
straightforward answer depending on the nurse.” Another stated, “I think I trusted the
nursing staff as much as the doctor.” Regular updates on the survivor’s medical status
from the medical staff were mentioned several times as a stress reducer and increased
overall conﬁdence in the care provided. “I felt so much better about being able to leave
the hospital for short periods of time knowing the nurses had my cell phone number and
would call if anything happened.”

On the other hand, several spouses and survivors had different experiences
regarding commrmication with the medical staff. “It was horrible. They do not know
what to do for a stroke,” another stated, “They are just horrid and basically all they do is
run some tests until you come out of there.” One spousal caregiver that expressed

discontent during the initial hospitalization period explained that due to the

62

overwhelming experience, he/she did not know “where to begin” asking the medical
stafﬁng for information, and felt that his/her presence was not “considered” by the
treating doctors. Other unhelpful factors identiﬁed by participants, speciﬁcally within the
hospital environment, included, the manner in which the medical staff spoke in front of
the stroke survivor who later reported that they were able to hear conversation but were
unable to reciprocate. For example, one spouse stated, “I was very angry when the
doctors would say to me that there was nothing that they were going to be able to do
anymore” a survivor also reported a similar experience explaining that he/she had so
many questions “but the doctor would not even take the time to try and talk to me.”

The manner in which the medical staff addressed participants was also identiﬁed
as an inﬂuential variable. Participants agreed that they felt more comfortable and
perceived the doctor as more “trustworthy” when the information and discussion was
conveyed to them as a couple. Participants could recall speciﬁc occasions when the
doctor or other medical staff would maintain eye contact and speak directly to the
survivor’s spouse. When this occurred, survivor’s reported they felt left out and
frightened. During the initial hospitalization period, the majority of participating stroke
survivor’s experienced post-stroke paralysis to varying degrees and were unable to speak.
Aphasia refers to speech and language impairment, which is a frequent post-stroke
characteristic, making communication difﬁcult or impossible. Stroke survivors are often
left with aphasia, however, cognitive skills, receptive language ability, reasoning
capabilities, and other intellectual functions remain intact.

Communication impairment as a post-stroke consequence can have devastating

effects on the stroke survivor and his or her spouse. Rollin (1987) concluded that

63

dysphasic survivors reported diminished self-concept, increased loneliness, and feelings
of isolation. During the initial hospitalization period, it is not uncommon for survivors to
be heavily medicated. Regardless of the survivor’s condition, couples agreed that they
felt more comfortable and preferred the doctor treated them as a couple rather than
speaking directly to the spouse. A spouse recalled that even though, the speciﬁc details
immediately following the stroke were difﬁcult to recall, one speciﬁc conversation “out
of a million” remained indelible. When the treating physician was present, he would
often hold the survivor’s hand while speaking to them as a couple, making eye contact
with both of them. He/she explained:
“. . .like we were both included and important which was so valuable. I
always felt much better when the doctor spoke to both of us. It made me
feel like I was not the only person making the decisions carrying all of the
pressure during those times.”

Depending on the level of aphasia, communication can be frustrating for both the
stroke survivor and his or her family members. Aphasia is a language and speaking
impairment common to stroke survivors typically more pronounced in left hemispheric
strokes. While cognitive abilities remain intact but aphasia creates signiﬁcant language
processing problems where the survivor is unable to verbalize the desired words or is
unable to process the words coming in.

Theme: Involvement in Medical Care

During the in-patient period, decision-making is typically afforded exclusively to

the treating medical staff and family responsibilities become survival and concern about

future medical treatment. As the medical system becomes the governing body, the roles,

64

rules, and behavior speciﬁc to that family are often overlooked. The medical staff’s
concern and attention is centered on the survivor’s care, rather than individual identities
and the couple or family system. It is not uncommon for couples in long-term maniage to
develop speciﬁc roles, boundaries, and values through both tacit and explicit agreements
over time, which deﬁne their individual couple system. A sudden or acute illness presents
a signiﬁcant challenge to the previously developed relationship.

Previous research has purported the signiﬁcance of family involvement in post-
stroke function recovery. Kriegsman, Van Eijk, Pennis, Deeg, and Bock, (1997), assert
that the availability of a spouse or partner, regardless of the quality or quantity of support,
increases overall functional capacity and mobility (Baker, 1993). Conversely, lower
ﬁmctional outcomes have been associated with a lack of a spousal support or
involvement of a close family member, following a stroke (Dombovy, Sandok, &
Basford, 1986).

During the initial hospitalization period, the majority of both stroke survivors and
spousal caregivers describe feeling “excluded and separated” from treatment decisions
and medical care while others reported feeling “off balance” and/or “out of control”. This
feeling was more prevalent when spouses were not provided with regular medical updates
and explanations for medical changes. As the survivor’s medical condition began to
stabilize, participants identiﬁed that forming a collaborative relationship and being able
to contribute to his or her care was a signiﬁcant factor and inﬂuenced their overall initial
medical experience.

The majority of spouses expressed a strong desire to be involved in the survivor’s

care and described a heightened appreciation for the attending medical staff when they

65

were allowed to contribute. For example, one participant stated, “Being able to help take
care of him or her made me feel like I was actually doing something rather than just
sitting around watching everything.” Due to the longevity of their marital relationship,
several participants also felt more capable of providing the personal care, as they were
aware of the survivor’s personal preferences. For example, one participant appreciated
being involved, she stated, "The nursing staff doesn’t even know him/her. They would
ask me what he liked and did not like and I could tell them. I don’t know if he/she knew
what was going on, but I felt better.”

Several participants directly participated in the survivor’s personal care, tending
to activities such as bathing, grooming, and dressing. Among the participants that assisted
with care, several reported feelings of empowerment and some sense of control in a
situation that felt “totally” out of control. One spouse stated, “I was an advocate and
made sure that the nurses knew exactly what the medications were for and made sure that
we counted all of the pills and the nurses did not appear to mind my presence or
involvement.” One survivor reported, “When the medical staff allowed our family to
assist the nursing staff, in particular with in personal care (e.g., bathing, toileting,
feeding), my anxiety level went down.” “I did it all. Depending on the nursing staff, I
wanted to help, some of them really appreciated that I was there.” In regard to the
uncertain post-stroke prognosis, one participant stated, “I wanted to know what I was
going to have to do and I wanted them to tell me and show how to take care of him or her
when we went home.” Providing direct care appeared to be an opportunity for spouses to
maintain a sense of intimacy. One participant stated, “I felt that being involved in his/her

daily care was a key for him/her feeling less scared.” Several spouses reported that it was

66

due to their long-term relationship with the survivor, they were able to convey his/her
likes and dislikes to the medical staff.
Theme: Positive Medical Rehabilitation Experience

The continuum of stroke care typically includes transition from an acute medical
facility to a specialized stroke rehabilitation program. According to stroke experts,
immediate rehabilitation with a speciﬁc emphasis on mobilization provides the best
opportunity for survivors to regain functional capacity (Evans, Bishop, Matlock,
Stranahan, Smith, & Halar, 1987). Early rehabilitation prevents secondary problems as
joint stiffness, decubitus ulcers, and pneumonia due to being in a supine position for a
long period of time. Several stroke survivors began rehabilitation while in the hospital.
When deemed “medically stable”, the stroke survivor was discharged from an acute
medical setting and admitted to an inpatient rehabilitation program. Admission to this
rehabilitation program required a full commitment and active involvement from both the
stroke survivor and his or her spouse. In addition, all stroke survivors were expected to
return home at the end of the program. Each stroke survivor indicated that his or her goal
was to be as functionally independent and productive as possible.

According to rehabilitation experts, the majority of a stroke survivor’s functional
gains are attributed to spontaneous recovery within the ﬁrst 30 days (Sandin, Cifu, &
Noll, 1997). Subsequent functional gains and overall rehabilitation success depends on
several factors including when the stroke survivor begins a stroke speciﬁc rehabilitation
program, the extent of the brain injury, the survivor's attitude and motivation, the
rehabilitation team's skill, and personal support from family and ﬁiends (Smith & Clark,

1995). Due to the varying and complex rehabilitation needs of each survivor, progress

67

and recovery differed. Participating stroke survivors with the least disability beneﬁted the
most. However, even seemingly minor progress in those with more severe disabilities,
made the difference between returning home and being institutionalized (Evans, et al.,

1 987).

Upon admission to the rehabilitation program, each couple and other family
members collaborated with the designated stroke rehabilitation team, and together
developed an individualized treatment plan to reach identiﬁed goals. The family and
medical collaboration continued throughout the rehabilitation process. The rehabilitation
program operated on a team approach including the stroke survivor, his/her spouse,
partnered with a comprehensive team of physical therapists, occupational therapists,
speech-language pathologists, rehab psychologists (behavioral medicine), nursing staff,
case managers, recreation therapists, and physiatrists. Participants described it as an
active and learning experience in which they both participated in goal setting, therapy,
and education. According to several spouses, previous physical skills and abilities were
lost new skills were needed.

Initially, each stroke survivor underwent series of diagnostic tests to determine
their individual level of ﬁmctioning. The rehabilitation program included strengthening
and conditioning exercise, training in self-care and daily living skills, ambulation and
mobility, retraining in speech, language, and swallowing, monitoring medications, and
cognitive perceptual training. Participants were involved regularly in three main types of
therapy; 1) physical therapy, intended to restore physical functioning (e.g., walking,
range of motion), 2) occupational therapy, assists survivors to releam skills necessary for

everyday living (e. g., dressing, activities of daily living), and 3) speech language

68

pathology, teaches alternative ways to recall lost memory and effective communication
techniques.

According to one survivor, “Right away when you begin rehab. You’re into
occupational therapy and physical therapy, every therapy that there is, and you are tired
but when you are in therapy you don’t have time to think about what has been lost only
what you might get back.” Another survivor stated, “Therapy was helpful. I couldn’t
walk when I ﬁrst started therapy and now I can walk and I can drive and I can do almost
anything.” Another participant reported, “Once we got to the rehabilitation center, he/she
(survivor) began to work as hard as possible to become independent and it was his/her
work ethic that made him keep on trying to do better.” Although, in this case, a full
recovery was not expected, he/she was encouraged by other patient’s progress also in the
rehabilitation program. “I knew that he/she wasn’t going to be the person that I always
knew but I could see other people that were walking and were driving and I thought that
he/she was going to get to that point and it’s a long road.”

One participant recalled, “I was amazed when they got him/her up and walking
while he was still in the hospital. They continued to try to get him moving after only one
week and then on to rehab. It was great there.” Another spouse stated, “My vision with
him/her was that I am the caretaker and I am going to kick him/her in the butt and do
everything that he/she has to do to get him/her better and on his/her own.”

A number of survivors described an overwhelming fear of becoming a burden on
their family members. Several survivors recalled that while they felt very motivated on
the “inside” it was extremely frustrating to when they were not able to “make my body do

what I was telling it to do.” Participant’s noted that seeing even a small gain in movement

69

of ability was celebrated. According to one survivor, “I’ll never forget one of my initial
therapy sessions. I was instructed to pick up a marble and place it on a board with
indentations for each marble. It is unbelievable how you can think you can do it and you
can’t.” Furthermore, he explained, “The thing that saved me, was that every day you do
it, you do it a little bit better, just a little bit better and the therapist would congratulate
me. I thought, hey alright, I did it one more time.” One spouse stated, “I wanted him/her
to come home but with having some type of dignity in front of the family was crucial.”
He/she indicated that encouraging independence would help increase his/her self-esteem
and likely be a motivator for ﬁrture efforts towards autonomy. Another spouse indicated,
“I needed him to work and if that meant that he/she was going to be crying while he/she
was working, then that is what had to happen.” Survivor’s and his or her souse were
occasionally at odds with the rehabilitation process. For example, “He/she said I’m just
not going to do this anymore, and I said, well, yes you are.” Another participant asserted,
“Even when he/she wanted to give up, we worked and worked and worked. He/she just
wanted to give up and I fought him the whole way and assumed control and said, you are
going to ﬁght this.” Several spouses remembered feeling as though they were constantly
encouraging the survivor to participant. Speciﬁcally, one spouse remembered, “I pushed
and pushed and pushed.”

It was not uncommon for supporting spouses to report feelings of frustration and
guilt while participating in the rehabilitation program. The majority of spouses felt that
the rehabilitation program was the best, and for some the “only” opportunity for the
survivor to regain as much independence as was possible. Several spouses reported

feeling “pushy or demanding” in their efforts to motivate the survivor. One spouse

7O

recalled, “I felt like I turned into the nasty spouse which was hard on both of us.”
Another states, “I would not let him/her rest, I was always “nicely” suggesting and
encouraging him/her to do just a little bit more, try just a little bit harder.”

The primary goal of a rehabilitation program was to provide stroke survivors with
the support necessary to achieve a functional level, which would allow them to return to
independent living at home. A stroke survivor’s ability to reach a speciﬁc level of
functional capacity is a decisive factor in whether they will be able to return home or be
placed in a long-term care facility. According to the majority of stroke survivor’s their
will to recover, their desire for independence, and spousal support was essential for
successful rehabilitation.

A caring and able spouse or partner can be one of the most important positive
factors in rehabilitation. Family members' knowledge also helps a lot. According to
Black, Soltis, and Fartlett, (1999), it is important that family members understand what
the stroke survivor has been through and how disabilities can affect the survivor. Prior to
admission to the rehabilitation program, the survivor’s spouse was required to make a full
commitment and be actively involved in the rehabilitation process. Again, the length of
time spent in the inpatient rehabilitation setting depended upon nature and extent of post-
stroke disability. All of the survivor’s spouse, both male and female, commended the
rehabilitation program and felt fortunate to have had the opportunity and access to the
therapeutic resources. The majority of the survivors considered the rehabilitation process
to be a positive experience, with one survivor reporting that regardless of the opportunity,

it was difﬁcult to get and stay motivated.

71

During the initial hospitalization period, perceptions of medical care and
treatment varied to some degree, however, both and spouses expressed overall
satisfaction with the rehabilitation program and felt that they had beneﬁted from their
participation. The majority of participants stated felt more comfortable when they were
admitted to the rehabilitation program and described the medical staff as being more
supportive and friendly. One spouse recalled, “I never felt comfortable until we began the
rehabilitation program.” Several spouses indicated that the encouragement from the staff
and the intensity of the program increased feelings of optimism and decreased feelings of
helplessness.

Themes:
1) Failure to Receive Tissue Plasminogen Activator (tPA)
2) Eroding Autonomy

Theme: Failure to Receive Tissue Plasminogen Activator (tPA)

In 1996 the U.S. Food and Drug Administration (FDA) approved the use of
Tissue Plasminogen Activator or tPA a thrombolytic genetically engineered blood clot
dissolver used to prevent permanent heart damage or brain damage immediately
following a heart attack or stroke. tPA has been shown to be very effective in treating
ischemic strokes caused by blood clots that obstruct the ﬂow of blood to the brain and
account for approximately 80% of all strokes. tPA can dissolve blood clots and restore
blood ﬂow to the brain signiﬁcantly reducing the permanent effects of a stroke, but must
be administered with in the ﬁrst three hours after the onset of symptoms (ASA, 2002).
According to the American Heart Association [AHA] (2005), the more quickly tPA or

other appropriate treatment is administered, the better the chances for recovery.

72

Seeking immediate medical attention following the onset of stroke symptoms is
critical to identify the speciﬁc type of stroke and to determine if the stroke patient is a
viable candidate for tPA (AHA, 2005). While all participating stroke survivors sought
and received immediate medical attention, the majority did not receive tPA. Failure to
receive or be considered for tPA, was identiﬁed as a common “unhelpful” factor that
signiﬁcantly inﬂuenced participant’s immediate medical experience and long-term
comprehensive medical perception. Several spouses stated, “I wish that he/she could
have got that new drug to see if that would’ve helped him/her so he/she wouldn’t have
been so severely disabled.” Another spouse indicated, “We requested tPA when we got
there, and they said no they weren’t going to do that, so that was something that he/she
and I both totally regret that we weren’t more aggressive.” The stroke survivor(s) that
did receive tPA credit the administration of the drug to their level of recovery.

Many stroke survivors believe that the failure to receive tPA increased the lengthiness
of their recovery process. One survivor stated, “I could have been mowing my lawn by
now if I had gotten that medication, I can’t remember the name of that drug, but I heard
that people who get that right away are better that the rest of us..

Theme: Eroding Autonomy

During the onset of hospitalization, the pervading tone of the medical staff led a
number of participants to describe their medical experience as “poor” or “negative.”
Several stroke survivors recalled that they had been treated with little respect and/or
regard towards their personal autonomy. For me, it was not so much what hospital staff

did, but how they did it. They acted like I wasn’t even in the room,” reported one

73

survivor while another survivor expressed a similar reaction, “. . ..it was like I was
invisible.”

Spousal caregivers also described feeling frustrated and resentful when they
perceived a lack of control, “It was maddening. That was one thing that really pissed me
off. I would not ever know what was going on. Medical staff would just breeze in and
without saying a word, whisk him/her away.” His/her doctor would just come in and not
even look at me when he was in the room.” Both stroke survivor’s and spouses reported
that it was not uncommon for the medical staff to address the survivor’s spouse directly
with little or no eye with the survivor. For example, one spouse recalled, “On occasion
the doctor would only address me rather than him/her but I didn’t want to call attention to
this or point it out when they were talking to me.”

As indicated previously, stroke survivors commonly suffer from aphasia, a speech
and language impairment that prevents or impairs ones ability to communicate verbally
or non-verbally. While the majority of participating stroke survivors initially experienced
aphasia, their ability to comprehend and process language remained intact. One survivor
described his/her feelings when the doctor would address his/her spouse rather than
speaking to both of them, “I’m the one that had the stroke and I wanted to talk to the
doctor and he wouldn’t even look at me, he would just talk to my husband/wife.” Another
stroke survivor recalled similar feelings of frustration, “I was scared to death and felt
even more scared when no one would talk to me. I felt terribly excluded.” It was not
uncommon for stroke survivors to experience fear and helplessness when they were not
included in conversations between the medical staff and his or her family members. For

example, “I felt helpless and discounted.” According to one spouse, “When the doctor

74

would not look at him/her (stroke survivor), I worried it was because he/she was not
going to make it.” Another spouse explained, “When he/she (stroke survivor) was right
there, and they would act like he/she wasn’t in the room times I would get very angry
about it.”

Several survivors felt particularly frustrated when medical staff would discuss
their prognosis with others, “As if I didn’t have a damn thing to say about it ...... like I
wasn’t even involved.” Several other participants indicated that when receiving results
from a speciﬁc diagnostic test or information regarding future the medical staff rarely
made an effort to include them in the conversation directly or indirectly. As such,
participants described medical staff as “less trustworthy” than when they felt included in
care decisions. One couple speciﬁcally recalled a situation when the treating physician
spoke directly to the survivor’s spouse, in the presence of the survivor, the spouse
indicated that the stroke survivor’s would not likely survive due to post-stroke
complications. He/she spouse described feeling, “It was surreal, here I was listening to
this doctor telling me my husband/wife would probably not make it and he/she was lying
right there. I knew he/she could ﬁgure out what the doctor was saying. It was
indescribable. The stroke survivor also vividly remembered the conversation and
described the experience as “maddening.”

A majority of participants believed that the level of post-stroke aphasia was
directly related to whether the survivor was included in discussions between family
members and medical personnel. A number of participants also noted that in the presence
of other family members, the medical staff was more likely to address them, excluding

the actual stroke survivors, particularly in cases where severe post-stroke aphasia had

75

occurred. At the time of the participant interviews, both the stroke survivor and his or her
spouse pointed out that even when aphasia had occurred, the survivor was aware and
understood the majority of discussions between medical staff and family members.

This partial relationship between the treating physician and stroke survivor was
associated not only with increased anxiety, reported by the survivor and his or her spouse,
but also with depression during the initial hospitalization period. One survivor expressed
a concern common to the majority of survivors, “When the doctor spoke with my
husband/wife, I never felt so alone and scared. I felt trapped inside of myself.” Several
more survivors indicated that the inability to communicate with the treating doctor was
very frustrating and they felt that the doctor should have included them in all discussions.
It was not uncommon for spousal caregivers express feelings of anxiety and frustration
when the medical staff focused solely on them rather than on their husband or wife, who
were the actual patient. Feeling ﬁ'ustrated with the medical staff because of this was a
common sentiment expressed among spouses ...“I didn’t like it when they treated
him/her like they did not even know what was going on. I knew that he/she could hear
them talking. I wish I could have said something at the time.”

Several participants believed that the survivors were excluded from conversations
with treating medical staff due to the general discomfort of addressing a patient who does
not exhibit any outward signs of comprehension. One spouse acknowledged, “The initial
treating doctor would completely ignore him/her (stroke survivor) and only speak to me.”
In another case, the stroke survivor was in fact included in several conversations with
his/her treating physician, however, it was the way” in which he/she was included that

caused him/her to experience frustration. “Sometimes my doctor would actually look me

76

in the eyes when he was in the room, but the damn doctor would then speak in a very
loud, slow voice, “I had a stroke it doesn’t make me retarded!”
Code: Social Support

Research has increasingly recognized social support as a signiﬁcant post-stroke
determinant (Berkman & Syme, 1976). Numerous research studies have established a
direct connection between social support and level of recovered functional outcome
following a stroke (Evans & Northwood, 1983; Friedland & McColl, 1987; Stephens,
Kinney, Norris, & Ritchie, 1987). Sources of social support include marital relationships,
family members, ﬁiends, and community support, and are invaluable to post-stroke
recovery. Clark and Smith (1999) found that stroke survivors from higher functioning
supportive families not only function at a higher level, requiring less caregiver assistance,
but also are more likely to become re-involved in social activities. The degree of social
participation and integration varied among individual stroke survivors and was
signiﬁcantly inﬂuenced by speciﬁc post-stroke outcome and functional abilities.

Several research studies have demonstrated that stroke survivor’s who report
higher levels of social support and social interactions expereince lower level of
depressions (Elliot, et al., 1992). Furthermore, emotional and informational support from
close friends or peers has been associated with decreased caregiver stress, increased self-
conﬁdence, and higher levels of personal perception reported by stroke survivors
(Stewart, Dodle, Hart, Langille, & MacPherson, 1998). Researchers purport that nature
and severity of the stroke event is actually less signﬁcant in post-stroke recovery than the

presence of social support perceived to be “emotionally supportive” and “empathetic”

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(Glass & Maddox, 1992) and is linked to increased levels of post-stroke recovery (Evans
& Northwood, 1983) implying the importance of subjective perception.

- A sudden and unexpected medical crisis or disability not only disrupts 'social,
emotional, and personal relationships for the survivor, but his or her spouse, and/or other
family members are often similarly affected. It was not uncommon for contact with
friends and extended family to decrease for both the stroke survivor and spousal
caretakers following the stroke event due to medical limitations, physical disability, and
self-consciousness about these changes. Post-stroke physical and emotional changes
initially led to decreased self-esteem and increased self-consciousness in several stroke
survivors. The majority of stroke survivors believed that the reduction in social
interaction was predominantly related to their fear of rejection from close ﬁiends and
former associates while spousal care takers related their reduction in social involvement

to physical and emotional exhaustion.
One stroke survivor reﬂected, “The neighbors were supportive. Some were and

some weren’t. You know, it’s funny .....but some neighbors withdrew from me it
seems like. I think they withdrew because they didn’t understand. I don’t blame
them. I don’t quite understand the stroke either.”
Theme: Family Involvement
Although the degree and type of social support varied among participants, it was a
common theme throughout each individual story. Participant’s reported that in addition to
both immediate and extended family support, social support had a signiﬁcant post-stroke

impact. One participant stated, “That is just what we do when someone needs

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something.” Another stated, “It was not a question of “if” people would “pitch in”, it was
when and how much do we need.

Empirical research of stroke survivors has established a direct connection between
social support and post-stroke functional abilities (Evans & Northwood, 1983;
Friedland& McColl, 1987; Stephens, et al., 1987). Support from
close relationships including, family members, close friends, and the community were
considered “invaluable” to both stroke survivors and spousal caregivers in post-stroke
recovery. From a family systems perspective, when a medical crisis occurs within the
nuclear family, it is anticipated that the family will be reciprocally inﬂuenced by the
extended family system of which they are members (Becvar & Becvar, 2003). All
participants reported some level of family support. Support included assistance with the
survivors’ daily needs, house cleaning, and cooking. As previously indicated, the
majority of strokes occurred within the stroke survivor’s home. Consequently, immediate
post—stroke support was provided by the survivor’s nuclear family. However, shortly
thereafter, participant’s reported that social support, other than nuclear or extended
family, was a constant presence. One participant stated, “That is just what we do when
someone needs something.”

Past research suggests that the stroke survivor and his or her family is vulnerable
to psychosocial problems following a stroke and continued familial support was
important subsequent to acute medical care and discharge from a rehabilitation pro gram..
As previously indicated, the majority of strokes occurred within the stroke survivor’s
home. Immediate post-stroke support was typically provided by the survivor’s nuclear

family and extended family. Many participants reported that their children were present

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immediately following the stroke, and several spouses identiﬁed their family support as
“as a blessing” due to the overwhelming nature of a stroke experience. One spouse
recalled, “Everybody was just unbelievably supportive, our kids would stay at the
hospital allowing me to worry less about what was going on at the hospital and do what I
needed to do at home.”

Each spouse spent a signiﬁcant time with the survivor during the initial
hospitalization period, several spending the night. Spouses reported that social support
during his time period was critical. Family members would “take turns” staying at the
hospital, providing an opportunity for spousal caregivers to leave the hospital setting to
go home and attend to personal and family matters. Each participant described social
support that was helpful and contributed to varying degrees to individual post-stroke
adaptation. Participant’s family involvement ranged from bringing food to relieving
tension and the monotony of the hospital environment. One spouse fondly recalled, “My
kids would bring me food, they would bring fun stuff up there like Chinese. I didn’t even
want to leave the room to go eat because that was usually the times that there were shift
changes.” Another spouse stated, “I was used to seeing my sisters but didn’t want to
leave him/her at the hospital. Instead they came to me. It made me feel less
disconnected.” Family support described by participants varied depending on the speciﬁc
needs of each individual. “Our family spent some time just encouraging and supporting
us and helping me straighten out around the house.” Several spouses indicated that they
“could not have done it” without assistance from family members. Social support
continued for the majority of participants following their discharge form the

rehabilitation program.

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Other research demonstrated that empathy, as an element of emotional support,
was linked to the level of post-stroke recovery. Furthermore, other research found that
overall progress following a stroke was greater for stroke survivors that reported higher
level of emotional support attained regardless of the nature and severity of the stroke
(Glass & Maddox, 1992). Clark and Smith (1999) found stroke survivors from higher
functioning families function at a higher level, requiring less caregiver assistance, and are
more likely to become re-involved in social activities. Satisfaction with social
relationships has been directly linked to stroke survivor’s general health status.
Conversely, stroke dissatisfaction with social relationships is reportedly foretelling of
poor health suggesting the importance of the recipeints subjective impression.

A direct link between stroke survivors perceived satisfaction with social
relationships and overall health status has been established. Social support has also been
shown to be an effective and signiﬁcant factor for family caregivers. Mant, Carter, Wade,
and Winner, (2000) demonstrated that families who received stroke support from an
organized and afﬁliated Stroke Association, described an increase in both social activity
and self reported health. The degree of social participation and integration varied among
individual stroke survivors and was signiﬁcantly inﬂuenced by their speciﬁc post-stroke
functional abilities. Several participants that described higher level of social support
described increased social involvement and interaction

Previous research sstudies found that stroke survivor’s who report higher levels of
support and social interactions expereinced lower level of depressions (Elliott, Herrick,
Witty, Godshall, & Spruell, 1992). Several participants described close friends as a

source of constant and continuing helpful support. One survivor recalled initially feeling

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very supported and less depressed as a result. She noted the importance of “Two long
ﬁ'iends that were always there for me.” Several spouses indicated they became more
aware of the importance of being supportive to others in times of “crisis” and suggested
they would be supportive under similar circumstances.

Theme: Congregational Support

Another type of social support considered to have a signiﬁcant inﬂuence on
individual participants was support provided by individual religious congregations.
Several participants identiﬁed congregational support as a reciprocal and inﬂuential
ecosystemic factor that facilitated their individual successful post-stroke adaptation
process. Support ranged from providing transportation, meal preparation, and home care.
Several participants, both stroke survivors and spousal caregivers indicated that simply
knowing that the entire congregation was praying for them provided a signiﬁcant source
of comfort, “Knowing that that the entire congregation was praying and very emotionally
supportive and compassionate.” Another spousal caregiver reported that the
congregational members from her church also visited stroke survivors during the initial
hospitalization period. “They sat with us and held our hands and we all prayed together
for the strength to get through this.”

Several participants reported that their pastor/minister/priest came to both the
hospital and the rehabilitation center to offer support. One spouse recalled that her
pastor’s presence contributed to her own personal strength in making a crucial decision,
“The doctors wanted me to decide about a surgical procedure that could have killed him,
but they also told me it might be the only way to save his life and I remember being

really overwhelmed. My pastor prayed with me about and it made me feel stronger.”

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Congregational support for some, continued beyond the initial hospitalization
period. For example, parishioners made home visits, offered verbal and spiritual support,
prepared meals, assisted with ADL’s, provided respite care, which allowed care providers
the opportunity to return to work. Several spousal caregivers reported that in order to
maintain health insurance, it was necessary for him/her to return to work rather than
providing requisite medical care. In one case, individual members of the congregation
signed up for “shifts” and were taught salient medical care by the spousal caregiver.

One spousal caregiver recalled:

“The members from my church were amazing. It relieved so much stress. . ..I

never could have concentrated on my job if I had to constantly worry about

whether he was getting proper care. At ﬁrst it felt like a ‘Catch 22’. . .about the
insurance vs caring for him, but after I didn’t have to worry about his care, it was

a lot easier than I thought.”

Another stroke survivor, working together with parishioners, constructed a wheel chair

ramp which provided access to church for not only the survivor, but also for other

physically challenged parishioners. “It was good for all of us, they got a ramp for other

people in wheelchairs, and I was able to contribute to something that I was good at.”
Code: Inﬂuence of Marital Relationship

Theme: Communication

Current research suggests that couples faced with an unexpected and
unpredictable chronic illness, are likely to experience signiﬁcant obstacles in marital
communication (Rolland, 1994). Moreover, found that when confronted with the

unpredictable post-stroke physical, emotional, and behavioral disabilities, couple’s

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reported increased tension, decreased cohesiveness and exacerbation of pre-marital
problems.

The sudden onset of a stroke leaves the stroke survivor and his or her family
unprepared for the devastating post-stroke implications. Depending on the nature and
extent of post-stroke consequences, previously established roles, life- scripts, and
personal self-image become unbalanced. Consequently, long established communication
patterns, developed and shaped over time within a family system, are signiﬁcantly
challenged. In long-term relationships, successful adaptation is predicated on effective
communication within the marital dyad system. Effective communication is a relative
term and speciﬁc to each individual couple.

Researchers assert that effective marital communication correlates positively with
healthier adjustment to illness and marital satisfaction (Gotcher, 1992). According to
Barbato and Perse (1992), in long-term marriages, couples that are able to convey
personal feelings or successfully resolve conﬂicts reported higher levels of marital
satisfaction and thus were more likely to effectively manage conﬂict, requisite role and
responsibility changes, and communicate emotionally salient issues (Vess, Moreland, &
Schwebel, 1985). Couples that have developed effective communication patterns prior to
the onset of a medical crisis are more likely to experience healthier post-stroke
adjustment and marital satisfaction. For example, several spouses felt that there was little
notable change in their communication patterns. “We could always talk. Now it just takes
a little longer but we both still try.”

Aphasia is a communicative impairment that usually occurs immediately

following a stroke event and renders the stroke survivor completely incommunicative.

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Although a stroke survivor may be unable to communicate, their receptive ability and
reasoning capabilities often remain intact. Aphasic survivors may eventually regain some
level of communication ﬁrnction through intense speech and language therapy; however,
they rarely regain their level of pre-stroke articulation and communication skills.

The inability to communicate was described by a majority of participants as
extremely “frustrating” and contributed to feelings of depression for both survivors and
spousal caregivers, within in the ﬁrst two years following the stroke event. Several
stroke survivors described feeling frustrated and angry with their inability to
communicate with their husband or wife. “It drove me crazy! I had so much to say but
could not even. begin to convey my thoughts. I just shut-up and refused to talk for a
while.” A stroke survivor’s inability to effectively communicate can lead to the
development of unhealthy interactional patterns within the marital dyad. Avoiding
discussions or unconsciously creating distance within pre-existing family relationships
may occur in a survivor’s effort to detach from overwhelming feelings. According to
Rollin (1987), aphasic survivors demonstrate diminished self-concept, loneliness, and
increased feelings of isolation. One spouse recalled that, “That aphasia, or whatever it’s
called, was the worse thing. I had no idea what he/she wanted or how he/she was feeling
about anything. I was so glad that part got better.” Other stroke survivors reﬂected, “I
think that was the worst part for us. I really just wanted to shut down but I really like how
we use to just sit and catch-up with each other and I did not want to lose that part of out
marriage.” Manne, Taylor, Doughert, and Kemeny (1997), reported that ineffective or
lack of communication, can advance mutual feelings of loneliness, anxiety, and

depression. Communicative deﬁcits are less obvious than the physical and emotional

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limitations, however, pre-stroke marital balance is easily disrupted as the lack of
communication or communicative impairments can easily be misinterpreted or
misunderstood. Three spousal expressed similar experiences, “I would have no idea what
he/she was trying to say or what he/she wanted. I would usually have to guess and that
made him/her so mad because it was usually the wrong thing.”

Participants, mainly stroke survivor’s, reported that communication impairment
following the stroke was a prime contributor to post-stroke depression. Stroke survivor’s
and spousal caregivers reportedly experienced profound sadness, heightened levels of
anxiety, loneliness, and frustration, particularly in cases where the survivor experienced
post-stroke aphasia. One survivor explained that he or she still experiences frustration,
regarding the inability to effectively communicate, “It changed because I am not able to
express myself as well. I used to be very articulate and sometimes I am not able to
express that feeling as well so I tend to get a little louder and I hate myself for that.”
Another stroke survivor stated, “I interact differently. After the stroke, my kids don’t
come and talk to me.”

Binder (1984) found that aphasic stroke survivors often experienced feelings of
inadequacy and a sense of loss in regard to their personal and family relationships. A
majority of stroke survivors explained that shortly after they had returned home following
rehabilitation, they became more aware of the repressions of not being able to effectively
communicate. “You just want to stay inside of yourself. There were actually people
around but I felt really lonely and alone” recalled one survivor, another stated, “I thought
I would be so glad to get home but when it was just the two of us, the fact that we could

not even have a normal conversation made me feel crappy about myself.”

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Consistent with the literature, several stroke survivors expressed frustration in
response to their difﬁcultly communicating with their families and in particular, their
spouse. Several survivors spoke about communication difﬁculties in reference to their
perceived reaction of their spouse. One survivor remarked, “He/she feels bad a lot of the
time because we don’t talk anymore. It’s just too frustrating for me,” while another
survivor reﬂected that the type of communication was more problematic, “I said had
things. . .I don’t know why I did it but I was mean sometimes. We communicated much
better before the stroke.” Several others described feeling “helpless and frustrated”
regarding the inability to communicate and in accepting this as a long-term condition.
“We always talked things out as a couple, now I had no idea what he/she thought about
things. I had to make all the decisions,” explained one spouse. A majority of spouses
expressed similar sentiments, “After the stroke there were huge communication problems
and still are especially when it is a hard day” and/or the reaction of another spouse, “In
the beginning, right after the stroke, if I had a problem I would not feel comfortable
fringing it up because it seemed so frustrating for both us. It just felt like too much
wor .”

There were differences in participant’s post-stroke emotion and feelings regarding
their personal abilities. Varying post-stroke lengths of time had elapsed for each couple
(1 — 7 years) as such, communication deﬁcits were not as severe or noticeable, according
to participants. The majority of participants, including both stroke survivors and spousal
caregivers, explained that eventually they were able to adjust and compensate as
necessary to accommodate the survivor’s communication difﬁculties. “I knew what

he/she was trying to say even when they couldn’t get all the words out or get all the

87

words right,” recalled one spouse. Another spouse explained, “Due to the cognitive
impairment following the stroke, communication was very difﬁcult. After the stroke,
he/she had difﬁculty for the ﬁrst 2-3 years it very frustrating at ﬁrst, but now we are able
to communicate a lot better than right after the stroke.” One spouse recalled, “It was just
amazing to me how he could say something and it was not necessarily the word but it was
the tone and I would know what he was getting at and I thought this is what being
married for such a long time does to you. It was just fantastic.” In regard to current
communication issues, stroke survivors, in general, indicated that while they still felt
frustrated with residual post-stroke communication problems, they were not as self-
conscious as in the past, more comfortable with their limitations, and likely to initiate
conversations and less likely to avoid social interactions.

Although communication patterns had changed, one spouse explained, “After the
stroke, the “survivor” seemed to be more aware of my feelings and will ask me how I am
feeling. He/she notices when I have a bad day and will say, are you sad?” Other spouses
mentioned that although the depth and ﬁ'equently of pre-stroke conversations had
dramatically changed, there was still an “emotional closeness.” In a very poignant
statement, one spouse indicated, “Even though I do miss having emotional discussions I
have learned to deal with it. But you lmow what, I think he/she actually loves me more
than h/she did before and I think that I love him/her more now than before the stroke.”
One spouse indicated, “Prior to the stroke we could always talk about everything and
now we may communicate less but it is still meaningful.” Several other participants
expressed similar sentiments including, “Maybe we don’t talk as much as we used

to. . ..but I know he/she loves me no matter what.”

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In contrast several spousal caregivers’s explained that they were more concerned
that their marital relationship was too fragile as was the survivor and feared that
expressing their personal concern may have caused additional distress. For example, two
spousal caregivers recalled their reluctance to discuss the increased stress they felt from
the increased roles and responsibilities, “1 was so stressed out but he/she was the last
person I was going to vent to. He/she felt so bad about being a burden, how could I have
complained to them?” Another spouse expressed similar sentiments, “When his/her
whole life was turned upside down, the last thing they needed was to hear me complain
about a little extra work that I had to do.” Others found solace in friends or conﬁded in
other family members, “I talked to my brother/sister everyday and poured my heart out. I
think that was what made the initial situation more tolerable” and “My ﬁiend became my
sole source of support, at least initially, they would listen for hours and just let me vent.”

Rolland (1994) suggests that a couple facing chronic disability can alleviate
constant conﬂict when both partners are free to express themselves emotionally and
initiate discussions when the need arises. Communication perceived as compassionate
and understanding by marital partners lowered emotional reactivity and reported stress
levels (Pistrang & Barker, 1995). While communication was described as “difﬁcult” by
the majority of participants, in particular communication immediately following and
within the ﬁrst year of the stroke event, many reported that they were eventually able to
return to a “functional” level of communication, “At ﬁrst, I missed talking about

everything with him/her and thought. . ...well this is just going to have to be the way it is.

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But now, we can talk even better than before,” One survivor explained:

“That was the best part about getting better; getting better meant we could spend

more time together just talking. I felt like we have been away from each other for

a really long time and then it was just like catching up. It really motivated me to

try my hardest in speech therapy.”
Theme: Role Flexibility

According to research on family health care, approximately 80% of stroke
survivors return home to be cared by family members (Han & Haley, 1999). In the
current research study, all stroke survivors were able to return to their homes
following their discharge from the medical and rehabilitation settings.

In a long-term marriage, changes in primary roles and identities are often the
result of a major medical crisis. According to Lyons (1991), an unexpected chronic
illness or medical crisis with an indeterrninable prognosis has greater impact on pre-
existing relationships. The degree of inﬂuence on the relationship is contingent upon
the degree and complexity of the relational reorganizing required (Lyons, 1991;

Burman & Margolin, 1992).

When a stroke occurs within a long-term marital relationship, the survivor’s
spouse is expected to become the primary caregiver. Without warning, unprepared
spouses must assume and manage a multitude of personal, emotional, behavioral, and
physical changes in their long-term partners. Several spouses reﬂected, “I had no time to
prepare. . ..one day you are a husband/wife taking care of your own thing. . .and next thing
you know, your whole world is turned up upside down.” The degree of difﬁculty to

regain some semblance of pre-stroke relationship balance was described by one

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participant as, “For me it was very difﬁcult at ﬁrst. He/she couldn’t do anything at ﬁrst. I
had to take care of him/her and the house while still trying to work to support us. I was
really afraid of not being able to do it all. . .I was afraid I would fail us.” In addition to the
innumerable responsibilities of providing post-stroke care, spousal caregivers must attend
to their own personal identity while simultaneously redeﬁning their personal long
standing marital and social roles.

A number of survivors described the difﬁculty of feeling and becoming totally
dependent and relying on others for “everything.” Other participants talked about similar
experiences regarding the immediate need to renegotiate established roles. For example,
one spouse recalled, “We really struggled initially with who was going to do what. We
both felt very frustrated.” Two survivors described the ﬁrst several months after
returning home as “unbearable.” According to one, “I was so used to working with my
hands and keeping busy. It was hell having nothing to do. I was bored and always in a
bad mood.” Another survivor recalled that relying on his/her spouse for personal
assistance was more difﬁcult than asking for assistance with a household task, “He/she
had to help me into and out of the shower. He/she washed my hair and got me dressed. I
always felt like such a burden but he/she never complained.” While post-stroke
adjustment was described by participants as difﬁcult one spousal care provider described:

”The change in our roles alter his/her stroke felt overwhelming at times. But, I

don’t begrudge anything that I had to do and I felt good about helping. I know

he/she would have done the same for me.”

A stroke that occurs within a long-term marital relationship can create a

signiﬁcant challenge to established roles and relationship patterns previously guiding

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the couple system. Tacit agreements regarding boundaries, sanctions, roles, and
responsibilities developed and maintained over the course of the relationship are
threatened. The meaning ascribed to these changes has a direct impact on the stroke
survivor’s ability to ultimately adapt to the post-stroke consequences and their ability
to make the necessary personal adjustments. The reaction of the spousal caregiver and
importance attributed to the stroke survivor’s needs directly inﬂuences the survivor’s
personal perception of his or her disability, self-concept, and self-esteem (Helgeson,
1993; Lawton, et al., 1989).

As indicated by (Rodgers & Calder, 1990), successful emotional adjustment is
more likely to occur in mutually empathic and caring marital partners. F urtherrnore,
Dombovy, Sandok, and Basford, (1986) suggest that support provided by a caring,
competent spouse is one of the primary factors in functional recovery. The availability of
resources and perception of the spousal care provider had a direct inﬂuence on the
couples overall coping success. Within a marital relationship, stroke recovery is a
collaborative process requiring both the reconstruction and renegotiation of roles and
identities. The ability of the stroke survivor and his or her spouse to accept changes in
established roles and responsibilities can minimize the relational disruption caused by the
stroke. One couple similarly described the period of time immediately after the survivor
returned home, “We could always get through things. We just accepted things were going
to be different and did not stress over the little things.” A spouse’s ability to adapt and
adjust to the care providing role is critical to the overall adjustment of the stroke survivor.
One stroke survivor expressed:

“I felt so bad at ﬁrst that he/she had to do everything for me but when he/she felt

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stressed we would talk about it and I think we both felt better. We never let it get

to a boiling point. We have both always been patient people and never really had

too many big ﬁghts during our marriage.”

The ability of a spousal caregiver to effectively adjust and cope with the often
inordinate post-stroke demands, is partially based on the level of caregiving
responsibilities (Beach, 1993). The requisite role adjustment and renegotiation, as
described by participants, varied and but was primarily dictated the degree of post-stroke
limitations and level of pre-stroke complementarity. To varying degrees, all participating
survivor’ described reliance on his or her spouse for basic physical care (ADL’s),
emotional, social, and ﬁnancial management or assistance. Whereas, spousal caregivers
described taking on additional responsibilities including cooking, driving, assistance with
ADLs, and ﬁnancial management.

“Frustrating” and “difﬁcult” was commonly expressed by participants in
regard to the adjustment in marital roles and responsibilities. In reference to this
issue, a number of participants, both survivor’s and their spouse, expressed similar
reactions. For example one participant explained:

“I had no idea about when to bring our cars in for service or how to change

the furnace ﬁlters and he/she was always good at remembering everyone’s

birthdays, anniversaries, you name it! I had to be reminded when it was our

own anniversary let alone my aunt so and so. I know he/she felt bad about not

keeping up with all of that so I tried my best but I know he/she was

disappointed.”

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Another stated, “I liked to cook a little before the stroke but I really had to learn how
afterwards”. . ...“Not working outside of the house was terrible. I felt like I was being
lazy just sitting around and I felt that he/she thought I could have done more”... “I
used to spend a lot of time with ﬁiends. After the stroke, I felt guilty even going out
for a few hours.”

In addition to the being described as frustrating and difﬁcult, spousal
caregiving, spousal care was also expressed as “indispensable.” A majority of
survivor’s expressed similar sentiments of one, “I would not be here today if it
weren’t for him/her” and “I don’t know what I would have done. I can’t even think
about it.” Whereas, the majority of spousal care providers expressed similar
sentiments of one, “I cannot imagine not being there and totally taking care of
him/her myself.

A stroke that occurs within a long-term marital relationship can create
signiﬁcant challenges to established roles and relationship patterns that previously
guided the couple system. Tacit agreements regarding boundaries, sanctions, roles,
and responsibilities that are developed and maintained over the course of the
relationship are threatened. The meaning ascribed to these changes has a direct
impact on the stroke survivor’s ability to ultimately adapt to the post-stroke
consequences and their ability to make the necessary personal adj ustrnents. The
reaction of the spousal caregiver and importance attributed to the stroke survivor’s
needs directly inﬂuences the survivor’s personal perception of his or her disability,
self-concept, and self-esteem (Helgeson, 1993; Lawton, et al., 1989). Several

survivors explained that their perception of the post-stroke burden and responsibilities

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that their spouses had assumed was as equally painﬁrl as the stroke event. One
survivor recalled, “I felt so bad for him/her. It made me feel worthless and at ﬁrst, I
wished I had died instead of becoming such problem for everyone.” However, other
survivors perceived their spouses to be more caring and tender after the stroke. “You
know, I think that this (stroke) brought us closer together. We worked it out and I feel
more in love that ever,” another explained, “I never felt like I was a burden. My
husband/wife was always supportive and never acted like I was a pain or like I was a
pain in the butt.”

Marriages once described as “egalitarian” experienced difﬁculty during the
adjustment period immediately following the stroke. A majority of male participants
worked outside of the home and managed the majority of the household income while
female participants were primarily responsible for raising the couple’s children and
managing the overall household. Initially, the inability to perform previous activities or
take an equal part in previously shared responsibilities was a signiﬁcant factor in both
male and female participants. In particular, a number of survivor’s expressed sadness
and/or frustration when required to relinquish his/her primary role due to their post-stroke
functional limitations, “This was a pretty traditional marriage. I mean I brought home the
bacon and he/she didn’t really work. I worked and he/she stayed at home. I was the
breadwinner before the stroke.” A predominance of male survivors expressed regret and
frustration at having to relinquish their long-term established careers required by the
stroke. The majority of stroke survivors were employed either ﬁrll time or part and/or
retired but active. Each believed that they were going to eventually return to some

semblance of their previous positions or be able to resume pre-stroke household

95

responsibilities (mowing the lawn etc.). Returning to work following their stroke
recovery was a motivating factor for most survivors. “I just kept thinking about what it
would be like when I got back to work. Everything was going to be so much better”
explained one survivor. Unfortunately, due to post-stroke limitations, very few survivors
were able to return to work and eventually faced involuntarily retirement.

Several spousal caregivers also expressed concern about the change in
employment. For example, “When will I ever be able to retire because I carry our health
insurance and we certainly depend on that insurance?” Another spouse recalled initially
feeling angry that he/she was “forced” to continue working rather than being able to
decrease hours to part time, “Before the stroke, we had planned on me cutting back my
hours to part time. After the stroke, I needed to work all I could because we lost one
salary and for the health insurance beneﬁts. I couldn’t help thinking “Why isn’t he/she
covered himself/herself?” One participant explained, “I worked outside the home but
after the stroke, I had to give up my job because I felt like I could not leave him/her all
day long.” Another participant expressed a similar experience, “I broke down. He/she
slept all day while I worked full time. I was up for hours at night making sure he/she was
all right. I was so exhausted all the time. It was just like being on the go all the time, all
the time and that was horrible.”

Becoming responsible for household tasks appeared to have a greater impact
on male spousal care providers. Several male spouses indicated that, prior to their
wives stroke, they were not aware of the extent of household responsibilities until
they were required to “take over.” For example one spouse indicated, “Anything she

would have done for me, I do now” and “There isn’t’ time to sit down and read a

96

book.” Whereas, ﬁnancial management was identiﬁed as a major role adjustment for
both stroke participating survivors and spousal care providers. It was described as
difﬁcult for male participants that had previously managed the couple’s ﬁnances to
“relinquish” this role and more difﬁcult for female participants to “assume” the
ﬁnancial management role if they had previously had been uninvolved prior to the
stroke event. For instance, several male participants expressed feeling a loss of
control related to the relinquishment of former responsibilities, “1 always took care of
our money. We shared every aspect of it but I used to keep track of it and manage it.”
Another stated, “I think I actually resented him/her when it came to managing our
money. I was a jerk at ﬁrst and would question him/her on certain things. I think that
was just my way of thinking I was still in control.” A few female participants also
expressed frustration about assuming the ﬁnancial responsibilities. For example, one
participants explained, “That was a big adjustment for me when I had to take over the
ﬁnances. I didn’t even know where the checkbook was kept let alone how to pay the
bills.” “I felt like I was making a mess out of his/her system. Frankly, I really did not
care about it in the beginning. There was so much else to do than enter receipts,
debits, and just keeping track of what we spent,” explained another. “In the past,”
explained on spouse, “1 was very independent. He/she provided for us very well and
he/she always handed over the money. He/she paid all of the bills. I had my own
checking account with my money that I made at work and tried not to live on that

money. That was a big adjustment for me when I had to take over the ﬁnances.”

97

According to participants, stroke survivors and spousal caregivers, some role and
responsibility adjustments within the marriage were made with relative case, while others
were not. For example, one spousal caregiver stated:

“Things like the ﬁnances, I did them when I was single so I knew how to do it, I

just hadn’t done it our marriage because he/she had offered. At ﬁrst we kind of

did it together and after I understood his/her way of doing them, we were

ﬁne. . .no problems. He/she was so organized, it was a lot easier than I had ever

imagined. We worked on them together so I never really felt alone.”

Several participants explained that their marital roles did not change signiﬁcantly
following the stroke, for example, “Our roles really did not change that much. After the
stroke, I helped with all of the things that he/she used to do. He/she really wanted to be
able to get back to do things without my help,” another participant indicated that the post-
stroke changes “It was a little bit overwhelming for me but I really did not want any
outside help. I ended up doing everything myself,” “It was sometimes difﬁcult, but
manageable” explained one participant. Another explained, “We had to renegotiate our
roles because before he/she would never have done household chores and now h/she does
them all. It’s nice to come home and not have to worry about the house anymore. I can
go to work and when I get home our time together is our time together.” Two female
participants described the transition in responsibilities for other responsibilities including
outdoor work (i.e., yard work, small home repairs) as relatively easy and “. . .it was really
not a big deal.”

For all couples, a new equilibrium was sought in an attempt to resolve the impact

of the stroke. At the time of each interview, couples were attempting to formulate a new

98

balance in their relationship by facing practical and emotional issues involved in
caregiving. Most marriages experienced major changes in role functions after a stroke.
Sense of Coherence

Current research literature suggests an increasing interest and relevance of
individual differences when faced with a stressful life event (Dohrenwend &
Dohrenwend, 1974; Goldberger & Berznitz, 1982; Holroyd & Lazarus, 1982). Emotional
and physical reactions to a stressﬁrl event such as disability, varies signiﬁcantly among
individuals. Personal disposition and environmental factors may account for the some
individuals to cope effectively and adjust after experiencing and a stress live event.

According to Antonovsky (1987), one explanation for these differences in the
Sense of Coherence (SOC). (SOC) is psychological and social factors that account for
individual coping and adjusting differences following a stressful life event (Antonovsky,
1987; Dohrewend, 1981; Garrity & Marx, 1985; Kelly & Lambert, 1992). Examining the
connection between the stroke survivor’s and his or her spouse personality resources and
adjustment to post-stroke disability is best understood when examined in the context of
the marital relationship.

A person with a high SOC is one who believes his/her world is understandable
and manageable and wants to cope with it. This refers to the personal dispositions that
may account for differences in the capability of the individual to cope effectively with a
stressful experience of disability. It is an internal coping resource formed by cultural and
structurally shapes patterns of life experience, and as such is a mediating factor
explaining successful person coping (Antonovsky, 1987; Kulick & Mahler, 1993;

Rintala, Young, Hart, Clearman, & Fuhrer, 1992). Accordingly, when individual’s are

99

faced a sudden medical crisis, researchers purport that emotional and physical reactions
are understood when examined within the social context in which it occurs (F olman,
Lazarus, Gruen, & DeLongis, 1986; McDaniel, Hepworth, & Doherty, 1992, Rolland,
1994). The emotional, social, and physical consequences following a stroke prevail long
after the initial stroke occurs and is a source of prolonged stress for both the survivor and
his or her spouse, forcing change in the entire family system (Crew & Krause, 1988,
1990; Lewis, 1986; McCubbin, et al., 1982). Post-stroke adaptation process is a shared
and multifaceted process experienced by the survivor and his or her spouse and achieved
through and within personal and social relationships.

People with high SOC are more likely to believe that their ability to overcome a
serious illness is determined by themselves and their behaviors. Something they do or do
not do determines their health status

Code: Psychological/Emotional Inﬂuence
Theme: Ability to Overcome Depression Related to Post-Stroke Disability

Due to residual physical, social, and behavioral impairments, depression is
common after stroke, yet it has proved difﬁcult to measure because language and
cognitive skills used to evaluate depressions are often affected post-stroke. Varying levels
of depression was reported among all participants. Since depression can slow the stroke
survivors’ recovery, it is important to accurately measure its prevalence. Stroke survivors
mentioned feeling sensitive, helpless, frustrated and worried about getting better. “We are
helpless,” said a survivor referring to his/her spouse as well. One stroke survivor who had
suffered a major stroke regretted that he/she did not feel that he/she was getting any

better and thought that his/her life was over. Until the stroke, another stroke survivor

100

considered himself/herself “indestructible,” and now he/she admitted, “I just feel
worthless sometimes.” Many of the participants simply stated, “I was so depressed” or “It
was so depressing, I just didn’t feel like life had much to offer anymore.”

Perceived caregiver stress was a common theme among stroke survivors and a
source of depression. Many survivors reported increased feelings of guilt regarding the
fact that they perceived themselves as burdens to their spouses. One survivor speciﬁcally
stated, “I felt so depressed because I kept thinking a lot about what a huge burden I was
putting on him/her.” Another stated, “I had always been more of a caretaker, I guess
because I’m female, and suddenly he is the caretaker. It felt all-wrong to me, like this
must be the biggest burden to him. It just made me depressed the more I thought about
it.” Another said, “I didn’t want him/her to be responsible for me, like having a baby or
kid who never grows up. That’s not the way it is supposed to be. You are supposed to
enjoy your retirement years. I just felt depressed thinking about the fact that neither one
of us would have the life I imagined. . .I’m a cripple, he/she never gets a break from it.”

Along with the actual survivors expressing their depression and feelings of guilt
related to burdening their spouses, the spouses recognized these feelings in their partners
as well. One woman said, “I think that he felt bad, even really depressed at times. He
tried to help or do normal things that he would usually do, but he couldn’t.” Another
spouse said, “He/she would constantly talk about being such a burden, even when I
would reassure him/her that this is just a part of life, it didn’t seem to help. There was a
lot of crying, and it just turned into depression.” Another spouse said, “I felt like I

watched his/her depression get worse and worse. I told one of the doctor’s and he/she

101

said it was clinical depression and it was normal after something like a serious illness.”
Another spousal caregiver said:

“He/she was pretty negative at ﬁrst. Well, he/she was just so used to being so

strong and now he/she isn’t as strong. You know, he/she wanted to be the

man/woman and take care of me and had to accept help from me for a while and
that was hard for him/her. It was real hard for him/her because he/she wanted to
be the strong one.”

Despite the high prevalence of depression among the survivors, they all
demonstrated a high capacity towards making personal choices to overcome their
depressive feelings. Many of the participants stated that once they actually recognized
that they were in fact “depressed,” they became active in trying to mitigate the symptoms
through a shift in their attitudes. One participant, said, “You know, how long can you
just keep feeling like crap and expect it to change by itself, you have to do something
about it, so I just started thinking differently about the whole thing.” Another said, “At
some point I got sick of ‘wallowing.” One survivor stated, “I started thinking about this
motivational speaker I had seen years ago, it was for some work thing. At the time I
don’t remember being really motivated by it or anything, but I remembered this term that
he used, ‘stinky thinking’ and I thought that’s exactly what I am doing. I need to stop.”
Yet another survivor said, “In some ways it was one of the things I could control. I was
having a lot of trouble controlling what had happened to me physically, but I could
control my attitude if I wanted. . .so I changed it, and along with that, other things started
going better too.” Finally, one survivor said, “I had felt sorry for myself for a long time,

but you go on. I mean what can you do? You have to go on. I was in a wheelchair and

102

 

my wife/husband would say “Stay here” and his/her two brothers came over and they
closed the pool. I was wheeled out and was sitting in the sun room and I watched them
and joked with them and then I really looked forward to the fact that someday I will get
out of this chair and then I am not going to be a burden on you and someday I’m going to
do this and drive a car and then I’m not going to be a burden on anybody. Just thinking
that, and doing the things I could helped me a lot.”

There were come survivors that continued to struggle with depressive feelings
despite attempts to change their outlook who utilized counselors/therapists for help. One
caretaker said, “He/she would say “I don’t want to feel like this, I’m really trying, but it
doesn’t help. I suggested that he/she talk to a counselor and eventually the counseling
was what helped.” That particular survivor acknowledged, “I was never really into the
counseling thing, but I didn’t want to think that I didn’t try anything in my power to get
well. If I chose to sit there my whole life feeling sorry for myself, I would have nobody
to blame but myself.” Two other survivors utilized counseling as well. One stated, “It
helped to have someone who understands the mind, keep you on track mentally.” The
other said, “Counseling was really helpful for me and my wife to deal with our negative
feelings.” In addition to counseling, three participants and two caretakers were
prescribed anti-depressants to help them overcome their depression. Most all of these
individuals made comments similar to one of the participants, “At ﬁrst, I didn’t think I
needed medicine, that I could do it myself, like I didn’t just want to take a pill. But I
really think it helped, at least it got me so I wasn’t feeling so bad, and then I took over

ﬁom there. I think in the end it was leaming to have a positive outlook.”

103

Theme: T enacity/Perseverance

Along with reported feelings of depression in the survivors, many reported that at
some time, “It was just too hard sometimes, I didn’t feel like I could make it.” Similarly,
many stated, “It would have been easier to just give up at times.” Much the same as they
handled their depressive feelings, they were able to transcend their feelings of
hopelessness by the difﬁculty of the situation with an ability to persevere despite the
many obstacles. One survivor remembers, “You know, I would just be at that point
where I had had it. Done. I’m not doing anymore....Then there would be something
inside me that would say, ‘hey you’ve got to keep working.” Another said, “It was a
game I would play with myself, like just get to this point, and you can call it quits, but
once I reached that point, I said I could do more.”

Many of the participants credit their spouses as being “cheerleaders” or even “task
masters.” One participant said, “I want to think I have the inner strength to just keep
going, but the truth is, I think my husband’s/wife’s constant pushing boosted my own
strength. One spouse explained:

“I used to think of myself as sort of a wimp, I was never athletic or anything like

that. My husband/wife was, so he was used to pushing himself/herself. He/she

did the same to me, and eventually, I realized I’m not a wimp at all, I have a lot in

me to keep pushing, even beyond what I thought I could. I’m pretty tough. I

didn’t give up.”

The caretakers themselves talked about the fact that they were tenacious in pushing their

spouses during the more difﬁcult times. Another spousal caregiver stated:

104

 

“When he/she and I went back into the rehabilitation program, and he/she just
basically, at that point, he/she just shut down and said that he/she wasn’t going to
do this anymore and I was pushing him/her to therapy and h/he was like alright
this is therapy but h/she was not putting a lot of effort into it so I said to him/her
one time, “you have to ﬁght this if want to go home. I’ll help you all along the
way, but you have to do it. And eventually he/she did.”

One spousal care provider described:

“He/she was lying there listening to this guy say, for the third time, that
they don’t hold out a whole lot of hope and so he/she just saying it, and it
was just like we are trying so hard just to keep him/her alive and he/she
was just so upset so that’s when he/she was just got irritated and it
spiraled. But then we talked and decided together that we were going to
prove them wrong and he had to ﬁght back and prove it.” Another spouse
said, “My vision with him/her was that I am his/her caretaker and I am
going to kick him/her in the butt and do everything that he/she has to do to
get him/her better and on his/her own. It is not my role to make life
comfortable for him/her.” His/Her husband/wife agreed, “He/ She was
pretty tough, but it’s probably why I got tough at some point instead of
throwing in the towel.” One spouse believed that his/her husband/wife
thought he/she was very “bossy and pushy” as well, “I needed him/her to
work and if that meant that he/she was going to be crying and just saying,
“I’m just not going to do this anymore,” “well, yes you are.” I felt like I

turned into the mean husband/wife, but at some point he/she said ‘thank

105

you.” Similarly, another spouse stated, “He/she just wanted to give up and
I fought him/her the whole way and assumed control and said, ‘I didn’t
keep you alive so you that you could give up. You are going to ﬁght this.’
I pushed him/her, I mean, I am such a ﬁsh mongers husband/wife, I
pushed him/her and pushed him/her so that they would take him/her back
to the rehabilitation program. I pushed, but it was him/her that decided to
listen to me and keep ﬁghting.”
Code: Philosophical
Theme: Spiritual Beliefs
Many of the participants in this study indicated that their spiritual beliefs heavily
informed their philosophy about life in general. In the speciﬁc context of the stroke and
its impact on their lives, the survivors and their spouses, credit their
spiritual/philosophical beliefs as signiﬁcantly impacting their ability to prosper during the
recovery process. Several of the participants described themselves with the adjective
“optimistic.” Many related that optimism with a belief in God or a higher power that
would help them through. One survivor said, “I have generally been a very optimistic
person, I assume, God willing, the best will happen, and this was a test. I could focus on
the fact that something had happened or continue to be optimistic that God would help
me through it.” Another couple talked about the idea that God often “tests” people in life
and that those difﬁculties and obstacles provide people with a chance to “grow.” One
survivor said, “The Lord never gives you more than you can handle.” His/her
husband/wife agreed, but reminded him/her, “this was really a test of our beliefs, but in

the end we did handle it.” Another couple talked about the idea that “Everybody has

106

burdens, some peoples are a lot worse than this, but our faith carried us through.” Finally,
one survivor said, “It wasn’t just me alone, I had God there every step of the way, and
that gave me strength and made me believe I could get through it.”

Along with a speciﬁc belief in God, some of the participants indicated that they
viewed their situation as having some predestined quality or having a meaning beyond
their immediate understanding. One survivor said, “There was a reason for this, I don’t
totally know what it was for, but at some time I thought that and I just had to deal with
it.” The spouse of a different survivor similarly observed:

“There is a reason for everything. God knows. We don’t know what it is though,

so that can be frustrating when you think, ‘Geez, why would this have to happen?’

But by the same token, knowing that God has a plan, you just have to go along

with it sometimes.”

Another survivor simply said, “. . .I guess this was just one of those things that was meant
to happen in my life. Another spouse recalled, “I guess I believe in fate a little bit, it was
just our fate.”

Social Constructionsism

Social constructionism proposes that each individual stories their life experiences
based on perception and construction of reality (Moules, 2000). Insight about one’s
process is often strengthened by the ability of the individual to make sense of their
experience through personal narratives (White & Epston, 1990. In this study, all of the
couples told a story of “successﬁrl” adaptation to the circumstances related to one of the
members suffering a stroke. While all of the couples perceived that they had adapted

successfully to the stroke, each had a very individual perception of the overall experience

107

on his or her relationship. Common themes were easily identiﬁed in terms of the
recovery process and the ecosystemic impact on successful adaptation, however with this
particular sample, the meaning the participants ascribed to the overall impact of the
stroke on their present relationship varied. There was not a common theme that
presented itself, therefore the following quotations illustrate the perceptions each couple
has attributed to the impact of the stroke on their marital relationship and their
constructions regarding it.

Couple 1:

This couples meaning focused primarily on the idea of afﬁrmation of
commitment. The survivor stated, “Well, it afﬁrmed for me how much my husband/wife
loved me which is something I think you might not realize unless you go through
something like this. I think this made me believe that he/she would love me and be there
for me no matter what. I probably would have thought she would, but this really proved
her loyalty to me. . .it makes me really secure about her commitment to me.” His/her
spouse continued along the theme of commitment by saying, “I could not have imagined
not taking care of him/her. Don’t get me wrong. . .there were days when I was ready to
throw in the towel, but I never stayed like that for too long. When you make a
commitment to someone, you don’t have a choice, like, oh, I’ll only be committed if
things are good. For better or for worse, this is just the ‘worse.’ But I also know he/she
appreciated every thing I did and when I look back, it was all worth it. If our places were

switched, I know he/she would do the same for me”.

108

Couple 2:

This couple focused on trust and loyalty. The stroke survivor believed, “Through
all of the time I spent in the hospital and rehabilitation I felt that I was just getting lip
service from the doctors and nurses. But the one person I could always trust was my
husband/wife. I knew he/she would always give me the direct and true answerers to my
questions no matter how hard it was. Even after all of the years that have past since I had
the stroke, he/she is who I trust more than anyone on the world”. The spouse said, “Over
the course of our marriage, I always felt we could trust one another, it was sort of an
unspoken agreement. We didn’t need to question the trust issue before. I think when you
think of trust in a marriage people usually focus on things like whether you would cheat
on each other or something like that. This I think was new deﬁnition of trust for us. . .My
husband/wife has told me so many times how this was a true test of our marriage and that
he/she trusts me so much. You know that I would be there through it all.”

Couple 3:

This couple surprisingly felt the stroke had very little effect on their present
relationship. The spouse stated, “It’s just a bump in the road. You have good and bad in
life. We had been through different things all through our marriage, this was hard at
times, but I really can’t think of how our relationship itself has changed now. There are
always adjustments.” The survivor, said, “It mostly changed how we did some things,
especially in the beginning there was kind of a dip, but I didn’t want it to change our

relationship too much, I liked how it was, so we tried to keep it the same.

109

Couple 4:

This couple talked about the fact that the emotional stress had originally been so
challenging, that it created more strain on their relationship, but that their ability to
withstand it over time probably contributed to strengthening their relationship. The
survivor said, “There was a long while there that I really didn’t want to live, I just wanted
for it all to be over, and to tell you the truth, I really wasn’t even thinking about our
relationship, just me and not having to go through it. And maybe sometimes, there was
some guilt about not wanting people to have to take care of me. But I think he/she was
the stronger one and kept pushing me even when I would be a real, you know, I guess,
SOB. So I think it made me think of her/him as a lot tougher. I still respect her/him
being able to go through all that.” The spouse admitted, “You know this is a hard thing
to say (got tearful), but there were actually times where I wished he/she would just die.
It’s what he/she wanted, and honestly I didn’t see how our quality of life could ever be
that good. . .. I know it was him that did the real work. . .to get better, but I kind of agree,
that I was a lot stronger than I thought I could be, and now I think we have a more equal
relationship.”

Couple 5:

This couple focused on their relationship getting stronger as it related to a joint
commitment to their religion/faith. “I think together, we have gotten more involved in
church, and that is a way we spend more time together. I mean we always went to
church, but our faith as a couple was renewed.” The spouse agreed, “I think I did a lot of

bargaining with God, during the stroke, but I think a lot of people, once they get what

110

they want, forget about it. But I think we really have seen how much your faith is
important to you during those hard times and we have together embraced it more fully.”
Couple 6:

This couple had a somewhat similar experience as one of the other couples, in that
they believed that enduring this experience afﬁrmed their marital commitment. The
survivor simply stated, “It affected our relationship now, but just showing us that this is
what commitment is all about. You just have to do it whether you want to or
not. . .because you made a vow. And then you know, ‘Hey I kept my commitment.” The
spouse agreed that this is the part that was most important to her/him, “This was my
“husband/wife, what else are you going to do? I guess, you could just walk away. Maybe
that would be the easy thing to do for some people, but I couldn’t have lived with myself
if I had. I couldn’t have broken our marriage vow. I think we both know that our
commitment is forever.”

Couple 7:

The individuals in this couple did not use a lot of words to describe how they felt
about the impact of the stroke. “It’s just about love. If you love someone or they love
you, nothing is impossible. There’s a lot of love.” The other member of the couple
agreed, “We love each other as much as ever, or even more.”

Couple 8:

This couple focused on a similar concept that some of the other couples had
mentioned in terms of adversity leading to strength. The survivor said, “It really
strengthened our relationship. I don’t think you could go through something really

difﬁcult like what we did, and not come out stronger.” The survivor responded “Well,

lll

not everybody would come out stronger, but we did. I think this is the type of thing that
could destroy a lot of relationships. You hear it all the time; people just bail out of it.
But I agree that it made us stronger. . .like the quote says, what doesn’t kill you, makes
you stronger.”

Chapter Five discusses emergent ﬁndings ﬁ'om the data and implications for
clinicians, healthcare providers, and marriage and family therapists. Limitations and

suture recommendations are also addressed in Chapter Five.

112

Chapter 5
SUMMARY AND IMPLICATIONS

This qualitative study was one of the few research efforts to explore the inﬂuence
a various ecosystemic factors, SOC, and social constructionism on one’s ability to
successfully cope and adapt following a stroke. Selecting, organizing, and reporting data
in a coherent and relevant manner is a fundamental challenge in qualitative research
(Gilgun, 1992). Qualitative research is conducted through prolonged interaction with the
researcher, a purposively selected criterion based sample, and data generated during the
course of interaction (Sword, 1999). Prolonged interaction with research participants
affords researchers an opportunity to gain a profound understanding of a speciﬁc
phenomena or life event (Wolcott, 1990). The primary research objective was to provide
middle-aged long-term married couples the opportunity to story their post-stroke
perceptions and experiences while examining ecosystemic and personal inﬂuences on
successﬁrl post-stroke adaptation.

Utilizing a grounded theory approach did not require a speciﬁc detailed summary
of each individual’s experiences; rather it promoted a progressive and comprehensive
consideration of the data as a whole. Participants described their personal post-stroke
experiences in a manner that was both poignant and forthright. During the interview
process, it was difﬁcult for the researcher to refrain from allowing participants to tell
their stories without requiring adherence to the speciﬁc research questions.

Determining what information to include while preserving the power and value of
each story was at times a struggle, however, re-examining the conceptual and theoretical

maps proved to be a valuable guide in data analysis and organization. Overall, the results

113

ﬁt well with the initial conceptual and theoretical framework theorized allowing the
researcher to recognize the value and process of theoretical development throughout the
research study.

Initially, the researcher theorized that certain ecosysterrric factors, social
constructionism, and sense of coherence contributed to one’s ability to successfully adapt
following and inﬂuenced the meaning each member attributed to the stroke impact. Data
collected from research participants was analyzed and organized into emergent categories
and further developed into data classes, codes, and themes. The subjective exploration of
successful post-stroke adaptation will likely contribute to the development of a strengths
model relevant to post-stroke couples. Understanding individual post-stroke experiences
and its inﬂuence on reality construction will also provide insight for clinicians relevant to
clinical assessment and subsequent treatment.

A stroke is a devastating medical crisis affecting an increasing number of people
each year. The threat of stroke continues to increase at an alarming rate with profound
and devastating consequences. This study explored the phenomenon of successful post-
stroke adaptation in middle-age long term married couples. Each participant provided
valuable information regarding ecosystemic and personal inﬂuences relevant to their
individual adaptation. This chapter will highlight several key ﬁndings within the data. In
addition, theoretical, research, and clinical implications will be addressed.

Conceptual Framework

After the data coding and analysis was complete, the conceptual maps presented

in Chapter 1 were revisited; one concept found in the literature review and initially

hypothesized by the researcher to be an inﬂuential post-stroke ecosystemic factor was not

114

evident in either the participant or ecomaps. The researcher expected gender to inﬂuence
the level and type of spousal care that was provided. However, in contrast to several
studies suggesting gender differences in the nature and extent of spousal caregiving
(Brok, 1992; Gwyther, 1990; Vinokur, 1990), there was no evidence in the current research
study to substantiate that gender contributed to the adaptation process. Conversely,
concepts that were not found in the review of literature but present in the participants’
post-stroke stories were marital commitment and relational resiliency. Each concept will
be explained in further detail within the Emergent Finding section.

A revised conceptual map (See Figure 5.1) illustrates the inﬂuence of ecosystemic

concepts relevant to this research study.

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Theoretical Foundations and Implications

Traditional medical outcome studies have primarily focused on biological
parameters of disease. As such, research and strength based data relevant to post-stroke
adaptation in middle-aged long-term married couples is limited. Qualitative research
allowed the researcher to study the essence of individual participant’s post-stroke
experiences and perceptions (Berg, 1989). Exploring the meaning ascribed to the stroke
impact on middle-aged long term marriage partners post-stroke was well-suited for
qualitative methodology as it allowed preconceived ideas, beliefs, and construction of
one’s life to connected with ecosystemic inﬂuences.

Irnpartiality and fairness, both primary tenets of human ecology, provided a non-
judgrnental forum for participants to story their experiences and perceptions (Bubolz &
Sontag, 1993). Based upon in-depth interviews, the researcher collected each
participant’s “lived experience” and meanings attributed to their post-stroke processes.
Processing and analyzing this data allowed the researcher to explore personal
characteristics of each post-stroke partner, their dyadic system, and inﬂuential
ecosystemic factors. Within the guidelines of grounded theory, theoretical concepts are
developed through interconnecting observations of phenomena and concepts with
existing theory and research (Glaser & Strauss, 1967).

Key Findings
Ecosystemic Inﬂuences Related to Post-Stroke Adaptation

Speciﬁc components of Bronfenbrenner’s (1979, 1992) Ecology of Human

Development and Person-Context Process Model were particularly relevant in this study.

The inﬂuence of ecosystemic factors on the post-stroke adaptation process was reﬂected

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within each participant’s story. Analyzing data from this perspective underscores the
signiﬁcant reciprocal inﬂuence of individuals and their environment.

The participant’s primary microsystem system, the marital relationship, was the
most signiﬁcant environment for post-stroke adaptation to occur. As such, it is not
surprising that participants discussed at length their post-stroke perspectives and
experiences within this relationship. This microsystem was the setting for both negative
and positive experiences following the stroke event and the system where both emotional
loss and support occurred. Other important microsystems for participants included
nuclear and extended family and various social support systems.

The macrosystemic connections were both the medical and rehabilitation
environments which were very inﬂuential contributors to the successful adaptation
process. Participants described helpful and unhelpful aspects of these environments
relative to their overall adaptation process integrating their personal identities and
characteristics as stroke patients and spousal caregivers.

Inﬂuential personal and environmental factors that contributed to successful post-
stroke adaptation were also clearly evident. Participants reported inﬂuential ecosystemic
factors that facilitated or impeded individual post-stroke adaptation across their systemic
environments. According to White and Epston (1990), the ability to explore and make
sense through personal narratives, increases insight into one’s own process. Participants
provided valuable information regarding ecosystemic and personal factors relevant to
their success. Bronfennbrenners’ Person Context Process (1992) theory provided an
opportunity for the researcher to examine reciprocal environmental inﬂuences and to

explore the adaptation process over time.

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Consistent with other empirical studies regarding SOC and health related
outcomes; personality constructs have been linked with acceptance and adaptation to
disability, marital satisfaction, health, and the ability to seek social support. It was
initially hypothesized that a connection existed between the personality resources of
stroke survivors and spousal care providers and successﬁrl post-stroke adaptation.
Resiliency was a personality characteristic detected in participating post-stroke couples.
The ability to employ effective coping techniques, optimism, motivation, and
comprehension Individual personality constructs were also evident
Relational Resiliency

It appeared that successful post-stroke adaptation was associated with the extent
to which individuals found meaning and purpose in their respective circumstances and
caregiving duties, and recognized and used micro-, meso-, exo-, and macro-systemic
resources. The latter includes supportive personality and effective coping behaviors,
relationship factors, including the survivor, his/her spouse, family members, or other
communal social support.

It is not surprising that stories of self-reported successful adaptation revealed
these traits. In keeping with Antonovsky’s theory of sense of coherence, these adaptive
traits have been found to be a primary factor in individuals and relationships considered
“resilient.” These individuals are not only able to withstand stress, but even grow and
thrive as a result of those experiences. Consequently, an effective strengths model of
post-stroke adaptation would need to include those traits. Resilient individuals are those
who are able to elicit nurture and other forms of support from others, have a supportive

belief system (including optimism and a desire for appropriate autonomy), and possess

119

good problem-solving skills (Cicchetti & Garmezy, 1993). Relationships that do not
disengage when faced with major external stress and which enhance the coping capacities
of one another possess a sense of “togetherness,” a sense of agency, good communication
skills around problem-solving, and the capacity to ﬁnd and use external resources such as
support groups (Walsh, 1996). Additionally, they include individuals socialized to
provide care to other family members (Walker & Lee, 1998).

Stroke is a circumstance to which not only the survivor must adapt, but also the
family system and others that have and will be interdependent with the survivor.
Seemingly, the greater the perceived post-stroke physical, cognitive, and social
consequences by the survivor, family system, and social system, the greater the challenge
to successfully cope and adapt appears. Participating middle-age long-term married
couples have indicated that the extent to which they consider themselves bound together
in love and positive reciprocal obligation, and the extent to which they can make use of
external resources, the more likely they are to progress.

During the acute stage, immediately following the stroke, all participants
described feeling sadness, frustration, and fear. Additionally, several spouses experienced
anger, emotional detachment, and guilt. According to Fitting, Rabins, Lucas, & Eastham,
(1986), spousal care-providers that experience care-giving as an obligatory burden are
less likely to express their negative feelings about the caregiving requirements This may
account for the survivor’s description of care provided by his or her spouse in deﬁnitive
terms including always; “Always felt love,” “Always felt safe,” and never, “1 never felt
like he/she would abandon me. He/she never complained.” And although several spousal

care-providers expressed feelings of apprehension and resentment during the acute post-

120

 

stroke stage, they also agreed that as time elapsed, the experienced their care-giving role
as “signiﬁcant” and “necessary.” Several couples, assigned blame outside the family

system. Blame was generally directed at the initial medical care received, speciﬁcally in

 

cases where the survivor was initially misdiagnosed or did not receive tPA.

TPA has been strongly supported by the American Heart Association, National
Stroke Association and American Academy of Neurology however, only a small
percentage of stroke patients in fact receive this treatment (F ayad, 2000). Receiving tPA
is often considered a medical risk vs. beneﬁt calculation. Stroke patients must

immediately undergo an extensive diagnostic evaluation and speciﬁc medical criteria met

 

w

before a patient is considered a viable candidate for tPA. If tPA is administered within
three hours following the onset of stroke symptoms, the chances for recovery increase.

Seeking immediate medical attention following the onset of stroke symptoms is
critical to identify the speciﬁc type of stroke (AHA, 2005). As indicated in Chapter 4,
only those patients that have experienced an ischerrric stroke are considered as potential
candidates and likely to beneﬁt form tPA. An exacerbation of post-stroke symptoms or
death can occur if bleeding occurs in the brain subsequent to the administration of tPA.
Unfortunately, as was the case for several participating stroke- survivors, medical
personnel were unable to accurately diagnose patients within the allotted time frame or
other physiological criteria was not met.

As a whole, spousal caretakers reported positive care providing experiences. The
majority of male care providers reported higher levels of marital satisfaction after
assuming the care-giving role. Similarly, a majority of female care providers reported an

increase in marital closeness post-stroke and reportably experienced higher levels of

121

marital satisfaction. This suggests that couples who reported higher levels of marital
quality in long-term marital relationships beneﬁt from assuming a care provider role
regardless of the care requirements (Montenko, 1989). In addition, the positive care-
giving experience in the context of a long-term marriage in addition to the length of time
that had elapsed following the stroke (M = 4.6 years) may have also been a factor.
Marital Commitment

Another commonality amongst participants was the strong commitment to their
marital relationship. This commitment may have contributed to the couple’s ability to
effectively provide and receive post-stroke spousal care-taking. Additionally, spousal
care-providers were immersed in the medical and rehabilitation experience, beginning
their stroke education during the initial hospitalization period. All participants agreed that
they received emotional support from medical personnel, especially the rehabilitation
staff. Similarly, the rehabilitation program provided both stroke survivors and spouses a
valuable opportunity to observe others couples in similar care taking and receiving
situations. By utilizing other available resources, such as a stroke support group, most
participating couples were able to transcend their negative experience and perceptions.
These factors likely contributed to the positive care- providing and receiving experience

and may account for the participating couple’s successful post-stroke adaptation process.

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Contribution to Existing Literature
Ambiguous Loss

As the concept of individual and family resiliency provides insight into the
positive wellbeing stroke survivors and family systems, an additional concept, ambiguous
loss (Boss, 1999), may explain why others in similar situations do not experience the
same outcome. In order to successfully adapt following a stroke, the ability to accept loss
may be necessary to complete the grieving process. However, due to the ambiguous post-
stroke prognosis stroke survivors and family members are often unable to predict the
degree of permanency of the biopsychosocial losses, and therefore may be uncertain as to
the nature and extent of the survivor’s role in the family.

The concept of ambiguous loss (Boss, 1999) has been useful in providing insight
into the complicated perceptions, emotions, and behaviors associated with diverse loss.
Consequently, it has also been extended to families experiencing chronic physical illness,
speciﬁcally, dementia (Adams & Sanders, 2004; Boss & Kaplan, 2004; Brouwer-
DudokdeWit, Savenije, Zoeteweij, Maat-Kievit, & Tibben, 2002; Perry, 2004; Sandes &
Sharp, 2004) and organic brain syndromes (Butera-Prinzi & Perlesz, 2004) as well as non
central nervous system diseases (e.g., Boss & Couden, 2002 Mosack, Abbott, & Singer,
2005)

According to the concept of ambiguous loss, family members may be confused
regarding their feelings, thoughts, and actions as the patient (their family member) may
be physically present but, in other ways, psychologically absent. This ambiguity,
regarding the extent to which the patient family member will or will not be involved,

within the family’s pre-established traditional role structures, may interfere with the

123

 

family members’ grief resolution, adaptation to the demands of daily living, and progress

toward rehabilitation goals. Boss (1999, 2004) and her associates have suggested that

there are 10 identifying symptoms:

“Frozen” (unresolved) grief, including outrage and inability to “move on”
Confusion and distress; Ambivalence

Uncertainly, leading to immobilization

Blocked coping processes

Experience of helplessness and, consequently, depression, anxiety, and
relationship conﬂicts

Response with absolutes, (i.e., denial of change or declaration of the loss);
Denial of facts

Refusal to renegotiate or redeﬁne previously established family roles
(believing that the patient/family member will return to his/her former
family position); indignation at the exclusion of the patient

Confusion in boundaries and roles

Guilt, if hope has been given up or if there is the desire to “move on”

Refusal to talk about the patient/family member and the situation

As stories were collected from each couple, both individually and conjointly,

regarding how each experienced and made sense of their lives following a major stroke

event, the researcher discover the inﬂuence of ambiguous loss in some cases and not in

others. For example, in several cases, spousal care providers claimed to not have

experienced any major ambiguity or confusion_regarding post-stroke role renegotiation,

“I just took over what he/she did. We helped each other,” another stated, “We always

124

 

 

 

helped each other out before. We tried to have him/her do as much as the things they did
before the stroke rather than me taking over, which would have been easier at times.”
Other spousal care providers indicated, “1 was so depressed but I wouldn’t let myself
think about if. I tried so hard to keep things normal at home, I ran 100 mph. trying to do
and be everything. I was aﬁaid if I really assessed our situation, I would be so depressed I
would never get out of bed, and/or be so mad at him/her that I would_burst.”

Hopefulness about the survivor’s ultimate recovery may have been helpful
in some ways and unhelpful in others. Fostering a sense of subjective optimism,
regardless of the objective evidence, may contribute to individual and relational
resiliency. However, to the extent that hope makes loss ambiguous, it may make
adjustment more difﬁcult.

Clinical hnplications

There are several techniques clinicians can employ when working with couples
following a stroke event. Encouraging a stroke survivor’s spouse or family members to
become and remain intimately involved in the discussions of mutual goals and future
expectations allows both partners to feel involved in the adaptation process and reduces
anxiety and fear. Stroke survivors, spousal caregivers, and other family members should
be fully informed and active participants in the post-stroke rehabilitation process to insure
adequate post-stroke preparation for spousal caregivers during each stage of the recovery
process. Additionally, encouraging post-stroke couples to re—engage in previously
enjoyable activities and people can increase a sense of belonging for both the survivor
and his or her spouse. Sufﬁcient opportunities must be available for both the survivor and

spousal caregiver to ask questions and address concerns.

125

 

It is important that clinicians are informed and able appreciate the relevance of the
stroke impact. Utilizing an educational counseling approach has lead to successful
transitions for both stroke survivors and spousal caregivers (Teasell et al., 2003). By
providing opportunities for families to realize the signiﬁcance of their involvement and
inﬂuence in determining and shaping the post-stroke outcome, clinicians and medical
personnel can increase levels of meaning, control, and comprehension (F orsberg-ereby,
Mller, & Blomstrand, 2002). Researchers suggest that combining both education and

counseling can reduce conﬂict within the family system while increasing post-stroke

 

knowledge (Evans, Matlock, Bishop, Stranahan, & Pederson, 1988). Decreasing family it
dysfunction can provide an excellent opportunity to focus on other issues including the E
survivor’s behavioral and psychosocial needs.
Collaboration between healthcare providers, clinicians, families, patients, and
communities can signiﬁcantly increase the effectiveness and value of the entire post-
stroke medical process. Acknowledging that clinical events usually transpire at diﬂ‘erent
levels, could promote uniform collaboration in which all participants are equal
contributors. Early intervention has been shown to prevent depression and later
biopsychosocial disorders in spousal care providers. Moreover, early intervention can
enhance a stroke survivor’s quality of life and reduce the likelihood of long-term care
institutionalization (Han & Hanley, 1999). Marriage and family therapists can address
stressors and unmet needs of both the survivor and spousal caregivers during the acute
post-stroke stage.
A stroke is a devastating medical crisis afﬂicting 750,000 of Americans each year.

The threat of stroke continues to increase, remaining the third leading cause of death in

126

the United States and second leasing cause of death in the world. To structure effective
clinical interventions, practitioners must be aware of the devastating affect that a stroke
has on not only the survivor but the entire family system. Recognizing the physical as
well as the profound psychological toll can help those working with stroke survivors,
families, and couples, while stressing the importance of addressing personal feelings and
conﬂict ﬂour a variety of vieWpoints.

It is important for clinicians working with post-stroke couples, to recognize the
individual process of each partner and the changes required following a stroke.
Recognizing the toll on the couple system due in part to necessary changes in life-long
roles and individual identities, can help normalize the signiﬁcant impact or difﬁculty the
couple may experience. Clinicians should avoid diagnosing or pathologizing what may be
normal transitional reactions to a stroke event. The knowledge gained by clinicians will
enable them to understand how spousal caregivers and other family members adjust when
a spouse or partner has suffered a stroke. It will also provide a ﬁamework with which
clinicians can understand their reactions and assist in the overall rehabilitation of clients.

Research Implications

This study included data from middle-aged long-term married couples that
successfully adapted following a major stroke event. This research shed light on further
studies to include couples that were unable to successfully adapt following a stroke.
Comparisons could be made of the personal characteristics and ecosystemic factors for
couples who were able to effectively cope and adapt. These comparative results would

provide clinicians with further insight in regard to individual and systemic resilience

127

 

 

 

while promoting the development of clinical models and effective therapeutic techniques
for couples facing crisis.

Larger, more diverse samples should be utilized and comparison groups of stroke
survivors of varying levels of function. Also, there is a need to incorporate speciﬁc
measures of marital quality and to examine responses of spousal caregivers and stroke
survivors within the ﬁrst few months following the stroke and again at varying
increments. Future research examining post-stroke adaptation in younger or elderly
married couples could provide insight into the inﬂuence of marital longevity and pre-
stroke relationship quality.

In the view of ecosystemic inﬂuences, individual characteristics, and meaning
ascribed to a stroke event, it is essential to assess not only the impact of stroke on the
marital relationship but also to assess a couple’s ability to cope and respond effectively.
Such research can provide clinicians and health care personnel with valuable information
in which to predict which couples may experience the greatest difﬁculty in adjusting to a
stroke. In order to attain balance and for the needs of both the stroke survivor and spousal
care provider, clinicians should attend to the “make-up” of the pre-stroke and post—stroke
marital relationship. Additionally, an ecosystemic focus may advance the growing
interest in ecosystemic and personal factors that may contribute to one’s ability to
effectively cope or adapt when faced with a stressful life event.

Limitations

This study also has some limitations. First, the sample was criterion based and

selected from a homogeneous source, which may be biased from the true population of

stroke survivors. Successful post-stroke adaptation was “self-rated” by participants and

128

 

1".

 

study did not include an ethnically diverse group of stroke survivors or spousal caregiver
and or severe strokes survivors including those that are incommunicative and/or
comatose.

Conclusions

This study offers insight into the strengths and environmental inﬂuences on the
ability of middle-age long-term married couples to successfully adapt following a stroke.
Strong support and persuasive evidence exists for the assertion that social connections
and social support are signiﬁcant resources with in a couple’s relationship. Stroke
survivors and spousal caregivers in middle-age long-term married couples also indicate
that ecosystemic and personality factors in addition to the shared deﬁnition of ascribed to
illness, are contributing components to successful and healthy post-stroke adaptation
individually and as a marital dyad.

Despite the obstacles and challenges of adaptation following an unexpected
medical crisis, these couples overcame their individual circumstances and moved forward
with their lives. The couples in this present study offered rich and candid information
regarding their struggles and successes in the face of a signiﬁcant adversity. This can
inspire all of us as we inevitably move into our older years to recognize the potential in

all human beings to persevere regardless of life’s demands.

129

 

Appendix: A Sample Letter to Participants
Date:
Dear (Name of Potential Research Participant):

Please allow me to introduce myself. I am currently a doctoral candidate in the
department of Family and Child Ecology at Michigan State University. I a in the process
of working on my doctoral dissertation which will explore the effect of a post-stroke
adaptation on middle-aged couples in long-term marriages. I am seeking stroke survivors
and his or her spouse who also meet the following inclusion criteria.

Participants are 50 and older (middle-age)

Participants have been married for no less than 10 years.

Participants have no children living at home

The stroke survivor is married to the same spouse at the time the stroke occurred
and at

the time this study is conducted.

I Survivor suffered a stroke with in the past ﬁve years

I The survivor experienced only one stroke

I Couples must conjointly consider themselves to have successfully adapted
following the stroke event.

While there is considerable research on spousal care-giver stress associated with chronic
illnesses and disability, the effect on middle-aged couples in long-term marriages has not
received comparable attention. Involvement in this study would require you to participate
in an interview with the researcher asking open-ended questions regarding your
individual post-stroke process and the impact you feel the stroke had on your couple
relationship. You will be asked to tell you’re the story, in your own words, including the
environments in which you interacted following the stroke and consider what inﬂuence
you felt these environments had on your ability to successfully adapt. Also, you will be
asked to talk about what personal resources you feel helped you to adapt. The meeting
and interview is expected to last for 2 hours and can be scheduled at a time and location
that is convenient for you.

If you are interested in participating in this study or would like additional information,
please contact me by telephone or e-mail. The contact information is provided below.
The anticipated number of couples needed for this study is approximately 10. However, it
is possible that data saturation may be reached prior to meeting with all interested
participants therefore; all interested couples may not be interviewed but will be notiﬁed
by the researcher should this occur. I would like to thank you in advance for your interest
and willingness to participant.

Lori R Stanley
(616) 942 — 7954 Home - (616) 862 — 7455 Cell

stanleyl@msuedu

130

 

 

 

Appendix B: Informed Consent Form

The purpose of this research study is to explore the biopsychosocial impact
and post-stroke adjustment in middle—age long term marriage partners. Speciﬁcally, this
research study will explore the inﬂuence and presence of speciﬁc ecosystemic factors
unique to these couples in an effort to determine if speciﬁc factors contribute to adaptive
post-stroke coping behavior in both the stroke survivor and his or her spouse.

By listening to stories, we expect to learn how middle-age couples in long term
marriages understand and experience the post-stroke consequences from an individual
and couple perspective. The common themes and patterns that emerge are expected to
contribute to the construction of grounded theory and direct clinicians in the development
of effective therapeutic techniques and interventions for middle-age couples attempting to
successfully adapt following a stroke.

The participants will share individual and conjoint post-stroke perspectives and
experiences during a semi-structured recorded audio interview. The expected duration of
each interview is 30 minuets. Stroke survivors and his or her spouse will be interviewed
separately for 30 minuets and conjointly for 30 minuets. By hearing the stories of both
the stroke survivor and their spouse, we expect to learn how couples perceive and
experience a stroke from an individual and couple perspective.

1,,have been fully informed regarding the nature,
extent, and purpose of participation in this research study conducted by Lori Stanley,a
doctoral candidate at Michigan State University. I believe that at this time, I have had the
opportunity to make a fully informed decision regarding my participation in this research
study. For that reason, I understand the following:

 

I The purpose of this research study is to explore the biopsychosocial impact and post-
stroke adjustment in middle-age long term marriage partners. The expected duration
of my participation is approximately 3 hours.

I I will be interviewed in my home unless otherwise speciﬁed, individually for 30
minuets and conjointly with my spouse for 30 minutes. Each interview will be record
with my prior consent and transcribed verbatim by the researcher.

I All information obtained in the interviews will be kept conﬁdential and any written
reports relating to theses stories will not use names or other identifying data. You
privacy will be protected to the maximum extent of the law.

I My participation is voluntary. I have the right to withdraw or decline to participate at
any time during the research study once participation has begun. I am protected ﬁ'om
any adverse consequences, penalty, or loss of beneﬁts to which I am entitled related
to my withdrawal or refusal to participate.

I Research participants may contact the researcher at anytime during the research
process to ask questions, receive answers, and discuss concerns regarding the
research project and research participant’s rights or in the event of research related
injury to a participant. The researcher, Lori Stanley, can be contacted at:

131

 

0 Home - Grand Rapids, MI (616) 942 — 7954
0 Cellular Telephone - (616) 862 — 7954

If you have any questions regarding this study, please contact the Primary Investigator,
Marsha Carolan PhD by telephone: (517) 432-3327, fax: (517) 432—3320, email
addresszemail: carolan@msu.edu, or regular mail at: Human Ecology Building 13 D.
Michigan State University, East Lansing, MI 48824.

I If you have questions or concerns regarding your personal rights as a study
participant, or are dissatisﬁed at any time with any aspect of this study, please contact
— anonymously, if you wish, - Peter Vasilenko, Ph.D., Chair of the University
Committee on Research Involving Human Subjects (UCRIHS) by telephone: (517)
355-2180, fax: (517) 432- 4503, email address: ucrihs@msu.edu, or regular mail at:
202 Olds Hall, Michigan State University, East Lansing MI, 48824.

Your signature indicates your voluntary agreement to participate in this research study. If
you agree to participate, please sign and date on the line provided:

Signature: Date:

 

Your signature indicates your voluntary agreement to be audio taped. If you agree, please
sign and date on the line provided:

Signature: Date:

 

132

 

 

Appendix C: Semi-Structured Interview Guide

Human Ecological Theog

1. How do aspects of the ecosystem inﬂuence adaptation involving each member
in post-stroke couples?

1a. What is most/least helpful in the medical system in regard to promoting
adaptation?

1b. What types of social support are most/least helpful to post-stroke
adaptation?

1c. How does the marital relationship itself, inﬂuence adaptability?

Adaptive Theorv — Semse of Coherengg

2. How does sense of coherence (SOC) inﬂuence individual members of long-
term marriages post- stroke adaptation?

Social Constructionism

2. How does each member of the couple make meaning of the impact on their
couple relationship?

133

 

 

REFERENCES

Adams, K. B. & Sanders, S. (2004). Alzheimer's caregiver differences in experience of
loss, grief reactions and depressive symptoms across stage of disease: A mixed
method analysis. Dementia: The International Journal of Social Research and
Practice, 3, 195 — 210.

Addington-Hall, J., Lay, M., Altmann, D., & McCarthy, M. (1998). Community care for
stroke patients in the last year of life: Results of a national retrospective survey of
surviving family, friends, and ofﬁcials. Health SOC Care Community, 6, 112 -
119.

Alldred, P. (1998). Ethnography and discourse analysis: Dilemmas in representing the
voices of children. In J. Ribbens & R. Edwards (Eds). Feminist dilemmas in
qualitative research. (pp. 147 — 170). London: Sage.

American Heart Association. 2002 heart and stroke statistical update.
Dallas, Texas: American Heart Association, 2001.

http:/l www.americanheart.org[statistics/index.html
Altheide, D. (1987). Ethnographic content analysis. Qualitative Sociology, 10, 65 - 77.

American Stroke Association (2002). http://www.strokeassociation.orglge_se_nter
Anderson, G. (1990). Fundamentals of educational research. London: Palmer Press.
Anderson, C. S., Linton, J ., & Stewart-Wynne, E. (1995). A population-based

assessment of the impact and burden of care-giving for long-term stroke
survivors. Stroke, 26, 843 — 849.

Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress
and stay well. San Francisco, CA. US: Jossey-Bass

Antonovsky, A. & Sourarrri, T. (1988). Family sense of coherence and family adaptation.
Journal of Marriage and the Family, 50, 79 — 92.

Atwood, JD. (1992). Family Therapy: A systemic Behavioral Approach Chicago:
Nelson-Hall, Inc.

Atwood, J .D. (1996). Family Scripts. Chicago: Taylor & Francis.

Badger, T. A. (1990). Men with cardiovascular disease and their spouses: Coping, health,
and marital adjustment. Archives of Psychiatric Nursing, 4, 319 - 324.

134

Baider, L. & Kaplan — De-Nour, A. (1988). Adjustment to cancer: Who is the patient the
husband or the wife? Israel Journal of Medical Science, 24, 631 — 636.

Baker, A. (1993). The spouse’s positive effect on the stroke patient’s recovery.
Rehabilitation Nurse, 18, 30 - 33.

Barbato, C. & Perse, E. (1992). Interpersonal communication motives and the life
position of elders. Communication Research, 19, 516 - 531.

Barker, C. & Lemle, R. (1984). The helping process in couples. American Journal of
Community Psychology, 12, 321 - 336.

Basch, M. (1976). The concept of affect: A re-examination. Journal of the American
Psychoanalytic Association, 2, 759 - 777.

Beach, D. (1993). Gerontoligical caregiving: Analysis of family experience.
Journal of Gerontological Nursing, 1 9, 35 — 41.

Becvar, D. & Becvar, R. (2003). Family therapy: A system integration (5th ed.). Boston:
Allyn & Bacon.

Berg, B. (1989). Qualitative Research Methods for the Social Sciences. Boston: Allyn &
Bacon.

Berkman, L. & Syme, S. (1976). Social class, susceptibility and sickness. American
Journal of Epidemiology, 104, 1 - 8.

Black, T., Soltis, T., & Bartlett, C. (1999). Using the ﬁmctional independence measure
instrument to predict stroke rehabilitation outcomes Rehabilitation Nursing, 121,
109 — 114.

Boss, P., Dahl, C., & Kaplan, L. (1996). The use of phenomenology for family therapy
research: The search for meaning. In D.H. Sprenkle & S.M. Moon (Eds.)
Research methods in family therapy. (pp. 83 - 106). New York: Guilford Press.

Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief Cambridge,
MA: Harvard University Press.

Boss, P. (2004). Ambiguous loss research, theory, and practice: Reﬂections after 9/11.
Journal of Marriage and Family, 66, 551 - 566.

135

Boss, P. & Couden, B. (2002). Ambiguous loss ﬁom chronic physical illness: Clinical
interventions with individuals, couples and families. Journal of Clinical
Psychology. Special Issue: Chronic Illness, 58, 1351 - 1360.

Boss, P. & Kaplan, L. (2004). Ambiguous loss and ambivalence when a parent has
dementia. Contemporary Perspectives in Family Research, 4, 207 - 224.

Brittain, K., Peet, S., & Castleden, C. (1998). Stroke and incontinence. Stroke. 29, 524 -
528.

Brockelhurst, J ., Morris, P., Andrews, K., Richards, B., & Laycock, P. (1981). Social
effects of stroke. Social Science and Medicine, 15, 35 — 39.

Brody, D., Miller, S., Lerman, C., Smith, D., & Caputo, G. (1989). Patient perception of
involvement in medical care: Relationship to illness attitudes and outcomes.
Journal of General Internal Medicine, 4, 506 - 511.

Brok, A. (1992). Crises and transitions: Gender and life stage issues in individual, group,
and couples treatment. Psychoanalysis of the Mid-Life and Older Patient, 10, 3-
16.

Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature
and design Cambridge: Harvard University Press.

Bronfenbrenner, U. (1986). Ecology of the family as a context for human development:
Research perspectives. Developmental Psychology, 22, 723 — 742.

Bronfenbrenner, U. (1992). Ecological systems theory: In R. Vasta (Eds) Six theories of
child development (pp. 187 — 249). London: Jessica Kingsley Publishers, Ltd.

Brouwer-DudokdeWit, A., Savenije, A., Zoeteweij, M., Maat-Kievit, A., & Tibben, A.
(2002). A hereditary disorder in the family and the family life cycle: Huntington
disease as a paradigm. Family Process, 41, 677 - 692.

Bruner, J. (1990) Acts of Meaning. Cambridge. MA: Harvard University Press.
Burman B. & Margolin, G. (1992). Analysis of the association between marital

relationships and health problems: An interactional perspective. Psychological
Bulletin, I 12, 39 — 63.

Butera-Prinzi, F. & Perlesz, A. (2004). Through children's eyes: Children's experience of
living with a parent with an acquired brain injury. Brain Injury, 18, 83 - 101.

136

Campbell, D. (1986). Relabeling internal and external validity for applied social
scientists. In W. M. K. Trochim (Ed.), advances in quasi-experimental design and
analysis (pp. 67 — 77). San Francisco: Jossey-Bass.

Carrere, S., Gottrnan, J. M., & Ochs, H. (1996). , October). The beneﬁcial and negative
inﬂuences of martial quality on immune functioning. Paper presented at the 36th
Annual Society for Psychophysiological Research Meeting, Vancouver, British
Columbia.

Carter, R. & Carter, C. (1994). Marital adjustment and effects of illness in married pairs
with one or both spouses chronically ill. The American Journal of Family
Therapy, 22, 315 - 236.

Cella, D., Perry, S., Kulchycky, S., & Goodwin, C. (1988). Stress and coping in relatives
of burn patients: A longitudinal study. Hospital and Community Psychiatry, 39,
159 - 166.

Center for Disease Control, 2002. http://www.cdc.gov/

Chadiha, L. A., Rafferty, J ., & Pickard, J. (2003). The inﬂuence of caregiving stressors,
social support, and caregiving appraisal on marital functioning among African
American wife caregivers. Journal of Marital and Family Therapy, 29, 479-490.

Chamy, I. (1986). An Existential/Dialectical Model for Analyzing Marital Functioning
and Interaction. Family Process 25, 571 —— 585.

Cicchetti, D., & Garmezy, N. (1993). Prospects and promises in the study of resilience.
Development and Psychopathology, 5, 497-502.

Cicourel, A. V. (1987). The interpenetration of communicative contexts: Examples from
medical encounters. Social Psychology Quarterly, 50, 217 - 226.

Cohen, D., Harbin, C., Collis, L., & Greenberger, J. (1986). Counseling the stroke patient
and family. Journal of the Medical Association of Georgia, 75, 93 — 97.

Cohen, D., Luchins, D., Eisdorfer, C., Paveza, & Gregory J. (1990). Caring for relatives
with Alzheimer's disease: The mental health risks to spouses, adult children, and
other family caregivers. Behavior, Health, & Aging, 1, 3, 171 - 182,

Cohler, B. (1982). Personal Narrative and the Life Course. In Life-Span Development

and Behavior (Eds.), P. B. Baltes and O. G. Brim, Jr. New York:
Academic Press.

137

 

 

IT—TT
i

 

Colantonio, A., Kasl, S., Ostfeld, A., & Bergman, L. (1993). Psychosocial predictors of
stroke outcomes in an elderly population. Journal of Gerontology: Social
Sciences, 48, 261 — 268.

Corbin, J. & Strauss, A. (1984). Collaboration: Couples working together to manage
chronic illness. Journal of Nursing Scholarship, I 6, 109 — l 15.

Coyne, J. C., Rohrbaugh, M. J ., Shoham, V., Sonnega, J. S., Nicklas, J. M., & Cranford,
J. A. (2001). Prognostic importance of marital quality for survival of congestive
heart failure. American Journal of Cardiology, 88, 526 - 529.

Crewe N. M. & Kraus, J. S. (1988). Marital relationships and spinal cord injuries.
Archives of Physical Medicine and Rehabilitation, 69, 435 - 438.

Crewe N. M. & Kraus, J. S. (1990). An eleven-year follow up of adjustment to spinal
cord injury. Rehabilitation Psychology, 354, 205 - 210.

Dekel, R, Goldblatt, H., Keidar, M., Solomon, Z., & Polliack, M. (2005). Being a wife of
a veteran with posttraumatic stress disorder. Family Relations: Interdisciplinary
Journal of Applied Family Studies, 54, 24 - 36.

Dennis, M., O’Rourke, S., Lewis, S., Sharpe, M., & Warlow, C. (1998). A quantitative
study of the emotional outcome of people caring for stroke survivors. Stroke, 29,
1867 — 1872.

Doherty, W., Boss, P., LaRossa, R., Schumm, W., & Steinmetz, S. (1993). Family
theories and methods: A contextual approach. In P.G. Boss, W.J. Doherty, R.
LaRossa, W.R. Schumm, & S.K. Steinmetz. (Eds.) Sourcebook of family theories
and methods: A contextual approach (pp. 3 - 30). New York: Plenum Press.

Dohrenwend, B. & Dohrenwend, B. (1981). Life stress and illness. Formulations of the
issues. In stressful life events and their contexts. (Eds.) Dohrenwend, B. S. &
Dohrenwend, B. P. (pp. 1 — 27). Monographs in Psychosocial Epidemiology
Prodist. New York.

Dombovy, M. L., Sandok, B.A., & Basford, J. R. (1986). Rehabilitation for stroke: A
review. In H. A. Liddle & D. C. Breunlind R. C. Schwartz (Eds.), Handbook of
family therapy training and supervision. (pp. 17 — 37). New York. Guilford Press.

Draper, B., Poulos, C., Cole, A., Poulos, R., & Ehrlich, F. (1992). A comparison of care-
givers for elderly stroke and dementia victims. Journal of American Geriatric
Society, 40, 896 - 901.

Elliott, T.R., Herrick, S.M., Witty, T.E., Godshall, F., & Spruell, M. (1992). Social

relationships and psychosocial impairment of persons with spinal cord injury.
Psychology and Health, 7, 55 - 67.

138

Evans, R., Bishop, D., Matlock, A. L., Stranahan, S., Smith, C. G., & Halar, E. M.
(1987). Family interaction and treatment adherence after stroke. Archives of
Physical Medicine and Rehabilitation, 68, 508 - 512.

Evans, R. L. & Norwood, L. K. (1983). Social support need in adjustment to stroke.
Archives of Physical Medicine and Rehabilitation, 64, 61 —- 64.

Feigin, R. (1998). The relationship between the sense of coherence and adjustment to
disability studied in the context of marital interrelations. Marriage and Family
Review, 27, 71 — 90.

Ferrucci, L., Bandinelli, S., Guralnik, J. M., Lamponi, M., Bertini, C., Falchini, M., &
Baroni, A. (1993). Recovery of ﬁmctional status after stroke: A post rehabilitation
follow-up study. Stroke, 46, 200 — 205.

Fetterrman, D.M. (1989). Ethnography: Step by Step. Sage: Newbury Park, CA.: Sage.

Fields, Cordel, & Bowman, (1983). Satisfaction in Long-Term Marriages. Journal of
Social Work, 28, 37 —- 41.

Firestone, WA. (1993). Alternative arguments for generalizing from data as applied to
qualitative research. Educated Researcher, 22, 16 - 23.

Fitting, M. Rabins, P. Lucas, M. & Eastham, J .(1986). Caregivers for dementia patients:
A comparison of husbands and wives. Gerontologist, 26, 248 - 252.

F olman, Lazarus, Gruen, & DeLongis, (1986). Appraisal, coping, health status, and
psychological symptoms. Journal of Personality and Social Psychology, 50, 571-
579.

Forsberg-ereby, G., Mller, A., & Blomstrand, C. (2002). Spouse of ﬁrst ever stroke
patients: Their view of the future during the ﬁrst phase after stroke. Clinical
Rehabilitation, I 6, 506 — 514.

Fowler, R. S. & Fordyce, W. E. (1972). Adapting care for the brain-damaged patient.
American Journal of Nursing, 72, 1832 —- 1835.

Foxall,M. J ., Eckber, J. Y., & Grifﬁth, N. (1986). Spousal adjustment to chronic illness.
Rehabilitation Nursing, 11, 13 - l6.

Franz, C. E. & White, K. M. (1985). Individuation and Attachment in Personality
Development: Extending Erikson’s Theory. Journal of Personality, 53, 224 — 256.

Freedman, A., Kaplan, H., & Sadock, B. (1975). Comprehensive textbook of psychiatry.
Williams and Williams, Baltimore.

139

 

Friedland, J. & McColl, M. A. (1987). Social support and psychosocial dysﬁmction after
stroke: Buffering effects in a community sample. Archives of Physical Medicine
and Rehabilitation, 68, 475 — 480.

Gale, J. (1996). Conversation analysis: Studying the construction of therapeutic realities.
In D.H. Sprenkle & S.M. Moon (Eds.) Research methods in family therapy (pp.
107 — 124). New York: Guilford Press.

Garrity T. & Marx, M. (1985). Effects of moderator variables on the response to stress. In
stress: Psychological and Physiological interactions (Eds.) by Burchﬁeld, S. R.
Hemisphere, Washington, DC.

Gergen, K. & Gergen, M. (1984). Narrative and the self as relationship. Advances in
Experimental Social Psychology, 21, 17 — 56.

Gergen, K. J ., & Davis, K. E. (1985). The social construction of the person. New York:
Springer-Verlag.

Gerhart, D.R, Ratliff, D.A., & Lyle, RR. (2001). Qualitative Research
in Family Therapy: A Substantive and methodological review. Journal of
Marital and Family Therapy, 27, 261 - 274.

Gilgun, J. (1992). Deﬁnitions, methodologies and methods in qualitative family research.
In Gilgun, J ., Daly, K., & Handel, G. (Eds.) Qualitative methods in family
research (pp. 22 - 39). Newbury Park: Sage.

Glaser, B. G. (1978).Theoretical sensitivity Advances in the methodology of grounded
theory. Mill Valley, CA: Sociology Press.

Glaser, B. G. & Strauss, A. (1967). The discovery of grounded theory: Strategies for
qualitative research. Chicago: Aldine.

Glass, T. A. & Maddox, G. L. (1992). The quality and quantity of social support: Stroke
recovery as psycho-social transition. Social Science & Medicine, 3,1249 — 1261.

Glass, T. A., Matcher, D. B., Belyea, M. J., & Feussner, J. R. (1993). Impact of social
support on outcome in ﬁrst stroke. Stroke, 34, 64- 70.

Goetz, J. P. & LeCompte, M. D. (1984). Ethnography and qualitative research in
educational research. San Diego: Academic Press.

Goldberger, L. & Berznitz, S. (1982). (Eds) Handbook of stress: Theoretical and clinical
perspectives. Free Press. New York.

Gordon H. S. & Rosenthal, G. E. (1995). Impact of marital status on outcomes in
hospitalized patients. Journal of American Medical Association, 155, 2465 - 2471 .

140

 

Gotcher, J. M. (1992). Interpersonal communication and psychosocial adjustment.
Journal of Psychosocial Oncology, 10, 21 - 39.

Greene, S. & Grifﬁn, W. (1998). Symptom study in context: Effects of marital quality on
signs of Parkinson's disease during patient-spouse interaction. Psychiatry:
Interpersonal and Biological Processes, 61, 35 - 45

Han B. & Haley, G. E. (1999). Family caregiving for patients with stroke review and
analysis. Stroke, 30, 1478 — 1485.

Hare-Mustin, R. (1994). Discourses in the mirrored room: A postmodern analysis of
therapy. Family Process, 33, 19 — 35.

Hartke, R. & King, R. (2002). Analysis of problem types and difﬁculty among older
stroke caregivers. Topics in Stroke Rehabilitation Special Issue: Stress and
Coping aﬁer Stroke, 9, l6 — 33.

Helgeson, V. (1993). The onset of chronic illness: Its effect on the patient spouse
relationship. Journal of Social & Clinical Psychology, 12, 406 - 428

Henderson, J. (1984). Aging and the Elderly: Humanistic Perspectives in Gerontology
Review of: Spicker, S. (Eds), Woodward, K., (Eds.) Medical Anthropology
Quarterly, 1 5,

Holmes, T. & Rahe, R. (1967). The social readjustment rating scale. Jourrml of
Psychosomatic Research, I I, 213 — 218.

Holyroyd, K. A. & Lazarus, R. S. (1982). Stress, coping, and somatic adaptation In
Handbook of stress. Theoretical and Clinical perspectives (Eds.), Goldberger, L.
and Breznitz, S. (pp. 21 — 35). Free Press, New York.

Hoshmand, L. (1989). Alternative research paradigms: A review and teaching proposal.
The Counseling Psychologist, 1 7, 3 — 101.

Kelly S. & Winograd, C. H. (1985). A frmctional approach to stroke managrnenty in
elderly patients. Journal of American Geriatric Society, 33, 48 — 60.

Kelly, S. D. M. & Lambert, S. S. (1992). Family support in rehabilitation: A review of
research, 1980 — 1990. Rehabilitation Counseling Bulletin 36, 98 — 119.

Kerlinger, F. N. (1986). Foundations of Behavioral Research (3rd ed.). New
York: Holt, Rinehart &Winston.

141

 

Kriegsman, D., Van Eijk, J., Penninx, B., & Boeke, A. (1997). Does family support
buffer the impact of speciﬁc chronic diseases on mobility in community-dwelling
elderly? Disability and Rehabilitation: An International Multidisciplinary Journal,
19, 71 — 83.

Kulik, J. & Mahler, H. (1989). Social support and recovery from surgery
Health Psychology, 8, 221 — 238.

Lavee, Y., McCubbin, H., & Olson, D. (1987). The effect of stressful life events and
transitions on family functioning and well-being Journal of Marriage and the
Family, 49, 857 — 873.

Lawton, M., Rovine, M., Moss, M., Kleban, M., & Glicksman, A. (1989). Measuring
caregiving appraisal. Journals of Gerontology, 44, 61 — 71.

Lewis, F. M. (1986). The impact of cancer on the family: Critical analysis of the research
literature. Patient Educational Counseling, 8, 269 - 282.

Lincoln, Y. & Guba, E. (1990). Judging the quality of case study reports. Qualitative
Studies in Education, 3, 53 — 59.

Lincoln, Y. & Guba, E. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.

Lyons, R. (1991). The effects of acquired illness and disability on friendships. In D.
Perlman & W. Jones (Eds.). Advances in personal relationships (pp. 223- 277).
London: Kingsley.

Manne, S. (1994). Couples coping with cancer: Research issues and recent ﬁndings
Journal of Clinical Psychology in Medical Settings, I, 317 — 330.

Manne, S. Taylor, K. Dougherty, J., & Kemeny, N. (1997). Supportive and negative
responses in the partner relationship: Their association with psychological
adjustrrrent among individuals with cancer. Journal of Behavioral Medicine, 20,
101 - 125.

Mant, J ., Carter, J ., Wade, D.T., & Winner, S. (2000). Family support for stroke: A
randomized controlled trial. Lancet 356, 808 — 813. New York: Guilford Press.

Marinelli, R. P. & Dell, A.E. (1977). The psychology and social impact of physical
disability. New York: Springer Publishing Co.

Marinelli, R. & Orto, A. (1978).The Psychological and Social Impact of Physical
Disability. American Journal of Orthopsychiatry, 48, 565 — 567.

Marshall, C. & Rossman, GB. (1995). Designing qualitative research Thousand Oaks,
CA.: Sage.

142

 

Matuma, H. & Varela, (1992). The tree of knowledge: The biological roots of human
understanding. Boston: Shambhala.

McCubbin, A., Hamilton, 1., & Patterson, J. M. (1982). Family adaptation to crisis. In
family stress, coping and social support (Eds.), McCubbin, A., Cauble, E., and
Patterson, J. (pp. 26 — 47). Springﬁeld: Charles C. Thomas.

McDaniel, S. H., Hepworth, J ., & Doherty, W. J. (1992). Medical Family Therapy. New
York: Basic Books.

Merriam, S. B. (1988). Case study research in education: A qualitative approach San
Francisco: Jossey-Bass.

Miles, M.B., & Huberman, A.M. (1994). Qualitative data analysis: An expanded
sourcebook (2“‘1 Ed.). Thousand Oaks, CA.: Sage.

Minuchin, S., & Nichols, MP. (1993). Family healing: Tales of hope and renewal ﬁom
family therapy. New York: The Free Press.

Mishler, E. G. (1986). Research interviewing: Context and narrative. Cambridge, MA:
Harvard University Press.

Moon, S. M. (1991). Case study research in gifted education. In N. K. Buchanan & J. F.
F eldhusen (Eds.), Conducting research and evaluation in gifted education. (pp.
157 — 200). New York: Teachers College Press.

Moon, S. M., Dillon, D. R., & Sprenkle, DH. (1991). Family therapy and qualitative
research. Journal of Marital and Family Therapy, 1 6, 357 — 373.

Mosack, K. E., Abbott, M., & Singer, M. (2005). IfI didn't have HIV, I'd be dead now:
Illness narratives of drug users living with HIV/AIDS. Qualitative Health
Research, 15, 586-605.

Moules, NJ. (2000). Post-modernism and the sacred: Reclaiming connection in our
grater-than-human worlds. Journal of Marital and Family Therapy, 26, 229 -
240.

Neal, M., Ingersoll-Dayton, B., & Starrells, M. (1997). Gender and relationship
differences in caregiving patterns and consequences among employed caregivers.
Gerontologist, 3 7, 804 — 816.

Newﬁeld, N., Sells, S.P., Smith, T.E., Newﬁeld, S., & Newﬁeld, F. (1996). Ethnographic
research methods: Creating a clinical science of the humanities. In D.H. Sprenkle
& S. M. Moon (Eds.). Research methods in family therapy, (pp. 25 — 63). New
York: Guilford Press.

143

 

Nillson, Axelsson, Gustafon, Lundman, & Norberg, (2001 ). Well-being, sense of
coherence, and burnout in stroke victims and spouses during the ﬁrst few months
after stroke. Scandinavian Journal of Caring Sciences, 15, 203 — 214.

Oberst, M., & Scott, D. (1988). Postdischarge distress in surgically treated cancer patients
and their spouses. Research in Nursing & Health, I I, 223 — 233.

Olson, D. & Sprenkle, D. (1976). Emerging trends in treating relationships.
Journal of Marital & Family Therapy, 2, 317 — 329.

Palmer, S., & Glass, T. (2003). Family function and stroke recovery a review.
Rehabilitation Psychology, 48, 255 -— 265.

Parmelee, P. (1983). Spouse versus other family caregivers: Psychology impact on
impaired aged. American Journal of Community Psychology, 11, 337 — 349.

Patton, M. (1990). Humanistic psychology and humanistic research. Person-Centered
Review. Special Issue: Human inquiry & the person-centered approach, 5, 191 —
202.

Periard, M. E. & Ames, B. D. (1993). Life style changes and coping patterns among
caregivers of stroke. Public Health Nurse, 10, 252 — 256.

Perry, J. (2004). Daughters giving care to mothers who have dementia: Mastering the 3
R's of (re)calling, (re)learning, and (re)adjusting. Journal of Family Nursing, 10,
50 - 69.

Pistrang, N., & Barker, C. (1995). The partner relationship in psychological response to
breast cancer. Science & Medicine, 40, 789 — 797.

Primomo, J ., Yates, B., & Woods, N. (1990). Social support for women dming chronic
illness: The relationship among sources and types to adjustment. Research in
Nursing & Health, 13, 153 — 161.

Raderstorf, M., Hein, D. M., & Jansen, C. S. (1984). A young stroke patient with severe
aphasia returns to work: A team approach. Journal of Rehabilitation, 50, 23 — 26.

Rena, F., Moshe, S. & Abraham, 0. Couples' adjustment to one partner's disability: the
relationship between sense of coherence and adjustment. Social Science Medicine,
43, 163 — 171.

Rintala, D.H., Fuhrer, M.J., Hart, K.A., Clearman, R., & Young, ME. (1992).
Relationship of life satisfaction to impairment, disability, and handicap among
persons with spinal cord injury living in the community. Archives of Physical
Medicine Rehabilitation, 6, 552 - 557.

144

 

Rodgers, J. & Calder, P. (1990). Marital Adjustment: A valuable resource for the
emotional health of individuals with multiple sclerosis. Rehabilitation Counseling
Bulletin, 34, 24 — 32.

Rolland, J. (1994a). In sickness and in health: The impact of illness on couples’
relationships. Journal of Marital and Family Therapy, 20, 327 — 347.

Rolland, J. (1994b). Families, illness, and disability. NY: Basic Books.

Rolland, J. (1994). Families and illness: A typological model. In F. Walsh & C. Anderson
(Eds.) Chronic disorders and the family, New York: Haworth Press.

Roessler, R. & Bolton, B. (1978). Psychosocial adjustment to disability
Baltimore, MD: University Park Press

Rollin, W. J. (1987). The psychology of communication disorders in individuals and their
families. Engelwood Cliffs: NJ .: Prentice Hall.

Sacco, R., Wolf, P., Kannel, W., & McNamara, P. (1982). Survival and recurrence
following stroke. The Framingham study. Stroke, 13, 290 — 295.

Sagy, S., (1990). The family sense of coherence and the adjustment to stress.
Unpublished doctoral dissertation. Ben Gurion University.

Sandes, S. & Sharp, A. (2004). The Utilization of a Psychoeducational Group Approach
for Addressing Issues of Grief and Loss in Caregivers of Individuals with
Alzheimer Disease: A Pilot Program. Journal of Social Work in Long-Term Care,
3, 71 — 89.

Sandin, K. J ., Cifu, D. X., & Noll, S. F. (1997). Stroke rehabilitation: Psychological and
social implications. Archives of Physical Medicine and Rehabilitation, 66, 52 —
55.

Schmidt, S., Guo, L., & Scheer, S. (2002). Changes in the status of hospitalized
stroke patients since inception of the prospective payment system in 1983.
American Psychological Association, 83, 894 — 898.

Schnitzer, P. (1993). Tales of the absent father: Applying the “story” metaphor in
family therapy. Family Process, 32, 441 — 458.

Schulz, R., Tompkins, C. A., & Rau, M. T. (1988). A longitudinal study of the
psychosocial impact of stroke on primary support persons. Psychology and
Aging, 3, 131—141.

Schumacher, K. (1995). Family caregiver role acquisition: Role-making through situated
interaction. Scholarly Inquiry for Nursing Practice, 9, 211 — 226.

145

 

Schwartz, L., Slater, M., & Birchler, G. (1996). The role of pain behaviors in the
modulation of marital conﬂict in chronic pain couples
Pain, 65, 227 — 233.

Senelick, R., Rossi, P., & Dougherty, K. (1999). Living with Stroke. A Guide for
Families. Contemporary Books: Chicago, 1999.

Smith, D. S. & Clark, M. S. (1995). Competence and performance in activities of daily
living of patients following rehabilitation from stroke. Disability and
Rehabilitation, 1 7, 15 — 23.

Sprenkel, D.H. & Moon, SM. (1996). Toward pluralism in family therapy research. In
D.H. Sprenkle & S.M. Moon (Eds.) Research methods in family therapy, (pp. 3 —
19). New York: Guilford Press.

Strauss, A. & Corbin, J. (1990). Basics of qualitative research: Grounded theory
procedures and techniques. Newbury Park, CA.: Sage.

Stephens, M. A., Kinney, J. M., Norris, V. K. & Ritchie, S. W. (1987). Social networks
as assets and liabilities in recovery from stroke by geriatric patients. Psychology
and Aging, 2, 125 — 129.

Stewart, M., Dodle, S., Hart, G., Langille, L., & MacPherson, K. (1998). Peer visitor

support for family caregivers of seniors with stroke. Canadian Journal of Nursing
Research, 30, 87 — 117.

Sword, W. (1999). Accounting for presence of self. Reﬂection on doing qualitative
research. Qualitative Health Research, 9, 270 - 278.

Talyor, S. & Bogdan, R. (1984). Introduction to qualitative research methods: The
search for meanings (2"‘1 ed.). New York: Wiley.

Teasell, R. (2003). Stroke recovery and rehabilitation. Stroke, 34, 365 - 369.

Thompson, S.C., Sobolew-Shubin, A., Graham, M. A., & Janigian, A. S. (1989).
Psychosocial adjustment following a stroke. Social Science and Medicine, 28,
239 - 247.

Trieschmann, R. B. (1980). Spinal cord injuries. Psychological, social, and vocational
adjustment. NY: Pergom.

Van Manen, M. (1977). Linking ways of knowing with ways of being practical.
Curriculum Inquiry, 6, 205 — 228.

146

 

Vess, J ., Moreland, J., & Schwebel, A. (1985). A follow-up study of role functioning and
the psychological environment of families of cancer patients.
Journal of Psychosocial Oncology, 3, 1 — 14.

Walker, J. & Lee, R. (1998). Uncovering strengths of children of alcoholic parents.
Contemporary Family Therapy, 20, 521 - 538.

Walsh, F. (1996). The concept of family resilience: Crisis and challenge. Family Process,
35, 261 - 281 .

Weissman, M. (1987). Advances in psychiatric epidemiology: Rates and risks for major
depression. American Journal of Public Health, 77, 445 — 451

White, M. & Epston, D. (1990). Narrative means to therapeutic ends. New York: W.W.
Norton.

Williams, A. M. (1993). Caregivers of persons with stroke their physical and emotional
well-being. Qualitative Research, 2, 213 — 220.

Wolcott, F. (1990). Writing up Qualitative Research Newbury. CA: Sage

Wyller, T. Hohnen, J. Lake, Lake, K. (1998). Correlates of Subjective Well-being in
Stroke Patients. Stroke, 29, 363 — 367.

Yin, R. K. (1989). Case study research: Design and methods (2“. Ed.). Beverly Hill, CA:
Sage.

147

 

    
  
 

   

     
 

    

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