1. Running head: CAREGIVER BURDEN 1
LAST MAN STANDING: CAREGIVER BURDEN IN DEVASTATING DIAGNOSIS
A Thesis
Presented to the Faculty
School of Behavioral Sciences
California Southern University
In partial fulfillment
of the requirements for the
degree of
MASTER OF SCIENCE
in
PSYCHOLOGY
By
Marla J. Sarratori-Lyons
April 2016

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California Southern University
Approval Form
We, the undersigned, certify we have read this Master’s Thesis Project and approve it as
adequate in scope and quality for the degree of Master of Science in Psychology.
Master’s Candidate:
Title of Master’s Thesis Project
Master’s Project Committee:
________________________________________________
Project Chair (Type name and degree) Date
________________________________________________ __
Committee Member (Type name and degree) Date
________________________________________________ _____
Committee Member (Type name and degree) Date

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ACKNOWLEDGEMENTS
First, I must acknowledge my children Joshua, Breanna, and Christian, and their father, Glenn.
They are my life and inform and influence everything I do. Second, I must acknowledge the
incredible faculty, advisors, technical, and financial support staff, for they have worked tirelessly
with me and encouraged and supported me every step of the way. In particular, I must express
my gratitude to Dr. McKiernan, Kathleen Hawks, Frances Simmons, Alan Cleverly, Rose
Stewart, and Celi Sebastian who assisted me in sorting through the many obstacles I faced along
the way. Finally, it is important to me that I thank the members of my church family for their
prayers as well as my Heavenly Father, His Son, His Holy Spirit, my Blessed Mother, and a
whole host of angels and saints who have seen me through life’s challenges and have continued
to keep an ever watchful eye on me as I have labored through this project.

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Abstract
Caregiver burden is a little understood and often overlooked fact in many lives. There are many
ramifications to this undertaking that few, especially those whose lives are not touched by illness
or disability, are able to understand. Research with regard to caregiver burden is limited and has
often been relegated to care of the aging and dementia patients. However, it is beginning to
blossom and venture into areas of caregiver burden not often considered. This work endeavors
to examine caregiver burden in three distinct areas, autism spectrum disorder, multiple sclerosis,
and serious mental illness. Autism has reached a prevalence of 1 in 160 worldwide (World
Health Organization, 2013) and is growing. Multiple sclerosis represents not only a loss of
mobility, but the independence, self-efficacy, and peace of mind that so many take for granted
(Dunn, 2010). Serious mental illness costs the affected approximately 25% of their lives in terms
of lost productivity and premature mortality (Song, Mailick, & Greenberg, 2014). The price to
the affected and, especially, those on whose care they rely, is all too often overlooked in the
hearts and minds of the learned and the influential. This work endeavors to investigate the
quality of life and well-being of those who care for the infirmed and significantly challenged and
intends to shed light on little discussed and relatively unknown topics. Researchers are
beginning to understand the need for continued study, as well as advocacy, intervention, and
support for informal caregivers who sacrifice so much for those they love.

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Table of Contents
Chapter 1 .........................................................................................................................................6
Introduction .........................................................................................................................6
Background of the Problem .................................................................................................7
Statement of the Problem.....................................................................................................7
Purpose of the Study............................................................................................................8
Theoretical Framework........................................................................................................8
Research Questions..............................................................................................................9
Hypothesis............................................................................................................................9
Importance of the Study.......................................................................................................9
Scope of the Study ...............................................................................................................9
Definition of Terms............................................................................................................10
Chapter 2........................................................................................................................................13
Review of Related Literature .............................................................................................13
Chapter 3........................................................................................................................................49
Research Method and Procedures......................................................................................49
Methodology......................................................................................................................50
Data Analysis .....................................................................................................................53
Methodological Assumptions and Limitations ..................................................................64
Research Findings..............................................................................................................66
Summary............................................................................................................................75
Conclusions........................................................................................................................83
Directions of Future Research............................................................................................87
References......................................................................................................................................89

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Chapter One
Introduction
The family unit is important and foundational in the life of human beings. Good, bad, or
somewhere in the middle, it colors the way in which the individual views the world and himself.
Salvador Minuchin (1974) recognized this as he developed a theoretical approach to
understanding and treating families. Known as Family Systems Theory (Corsini and Wedding,
2013, pg. 375), it became a pioneering treatment modality to access and assist couples and
families in times of crisis, when intervention is indicated, or when families seek deeper
understanding and improvement of their interpersonal dynamic. Further, as therapeutic
endeavors historically focused on the individual, the universal philosophy was that individual’s
pathology negatively affecting the environment. Consequently, if the individual was fixed the
environment would improve. Minuchin viewed the individual, not as a catalyst for creating a
dysfunctional environment, but, instead, as one factor within an environment that was interacting
with and influencing others who were contributing to an unhealthy environment, as a whole. So,
instead, he began to examine each individual’s environmental contribution and how each
individual responds to and copes with various behaviors within the context of the family with its
traditional system of verbal and non-verbal communication, role expectations, and collective
understanding of its systemic function (Corsini & Wedding, 2013, p. 375). What happens,
though, when one or more members of the family receive a life threatening or devastating
diagnosis? What occurs in families when a child, for example, is diagnosed with autism? How
does the dynamic change when subsequent children are diagnosed with this condition? What
takes place when a family member is diagnosed with mental illness or other nervous system
disorder, such as multiple sclerosis or similar degenerative nervous system disorder? Are

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community services sufficient, or even in existence, which offer some hope, as well as, practical
solutions to assist so burdened families in reassembling the remnants of their existence and thus
re-create fulfilling lives
Background of the Problem
Families in contemporary society face many burdens regarding the emotional, personal,
social, financial, and practical hardships of caring for and about an infirmed loved one. As a
result, in studies focusing on the parenting of children with disabilities or, additionally,
caretaking of an adult with a disability, the caregiver is often stripped of many personal and
instrumental resources. Moreover, their self-confidence is systematically eroded by the
additional strain of criticism from extended family, lack of support from co-workers and
supervisors, and corresponding feelings of despair when the care recipient’s condition
deteriorates (Li, Shaffer, & Bagger, 2015). Often, the caregiver’s only choice is forced
resignation, which represents an additional loss of resources (Li, et. al., 2015). The last refuge
can be found in support services, but this can be beyond the reach of many due to availability,
distance, financial prohibition, accessibility to transportation, and a myriad of accompanying
factors which are situationally specific (Al-Farsi, Y., Waly, Al-Shabart, Al-Shafaee, Al-Farsi, O.,
Al-Fahdi, Ouhtit, Al-Khaduri, & Al-Adawi, 2013; Adewuya, Owoeye, & Erinfolami, 2010).
This piece serves to elucidate, via current research performed between 2010 and the present, the
necessity of significantly more research, as well as, and perhaps more importantly, the
development of treatment and support protocols for such families.
Statement of the Problem
From the overall tone of the research, it would appear that over-burdened families are
being underserved both systemically and experimentally (Beentjes, Goosens, & Poslawsky,

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2012; Chakraborty, Satabdi, Anderson, Nimgaonkar, Vishwajit, & Deshpande, 2014). Many
studies suggest additional research is necessary and that utilizing larger sample sizes may assist
in determining if results can be generalized to the larger sample ( Beentjes et. al. 2012;
Gonçalves-Pereira, Xavier, Wijngaarden, Papoila, Schene, & Caldas-de-Almedia, 2013; Olsen
Roper, Allred, Mandleco, Freeborn, & Dyches, 2014; Strunk, Pickler, McCain, Ameringer, &
Myers, 2014).
Returning to the topic of family systems theory, it appears that a more viable solution
may be found within the families themselves. Rather than endeavoring to rehabilitate the
individual, the family unit becomes the service recipient thereby requiring clinicians, outreach
professionals, and case managers to problem solve, educate, and counsel the family within the
context of its unique dynamic. In doing so, the problem of overburden with regard to caregivers
may be alleviated.
Purpose of the Study
As indicated in the literature, caregiver burden and its effect on families is an
underserviced area of examination. Emphasizing family support may improve the quality of life
for those who have one or more devastating diagnoses. Many of these families experience
significant hardship in a number of domains (Cho & Sang, 2015; Kirby, White, & Baranek,
2015).
Theoretical Framework
This work is predicated on Minuchin’s family systems theory (Corsini & Wedding, 2013,
pg. 375). The writing endeavors to examine devastating diagnosis via the lens of the family
system and how the many faceted aspects of its operation is affected.
ResearchQuestions

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The questions under consideration are how does devastating diagnosis change family
dynamics, what kind of shifts occur, and why does this take place? Additionally, what does the
outcome mean for treatment protocols?
Hypothesis
Devastating diagnosis is a major contributing factor to caregiver burden and is
responsible for negative changes along most significant life domains. This hypothesis speculates
that this is a determining factor in caregiver burden and will be upheld by the research.
Importance of the Study
Since much of the research under consideration has routinely established a precedent for
additional study, this work may be added to the body of knowledge derived from predecessors in
the field. Further, protocols for treatment may possibly be developed depending on outcomes.
Scope of the Study
This writing will address caregiver burden as an ongoing state of cognitive and emotional
discomfort in response to the extraordinary needs of an individual who is experiencing a life
altering diagnosis. These needs will assume the form of providing or assisting in the
maintenance of shelter, overseeing finances, advocating with medical and/or psychiatric
professionals, providing or facilitating transportation, anticipating and providing for the loved
one’s future well-being following the caregiver’s death, and assisting in the procurement of the
most basic needs such as food and clothing. For purposes of this piece, autism, mental illness,
and degenerative neurological conditions, such as multiple sclerosis will be addressed. Physical
manifestations of psychological distress as a result of the circumstances involved in the ongoing
care of a loved one will also be addressed.
Definition of Terms

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The term negative changes is intended to signify downward shifts in financial resources,
loss of income, ability to engage in pleasurable activities due to reduced financial reserves,
reduction in social interaction often due to lack of social or familial support, actual and perceived
loss of positive anticipation of future events, and other unintended consequences surrounding the
devastating diagnosis. Significant is used to indicate noticeable and distressing differences in the
previously mentioned life domains so as to induce a sense of loss. Sense of loss is identified as
grief and all appropriate synonyms to denote a longing for previous, more prosperous
circumstances and resources. Included in this definition of quality of life is relationship
satisfaction within and without the family, contentedness, the hope for the future, and financial
security. Relationship satisfaction includes an atmosphere of interpersonal comfort and security
between people. In this instance, it includes members within the family circle, extended family,
friends, and acquaintances. Contentedness is defined, for this purpose, as a sense of ease,
pleasure, and gratification within the context of family circumstances, situations, and overall
lifestyle. Hope for the future refers to anticipation of positive outcomes in the days, months, and
years that lie ahead in the lives of family members, primarily the givers and recipients of care.
Financial security simply denotes the availability of sufficient income to meet the needs of the
caregiver and receiver, as well as, the other members of the family. This may include
extraordinary expenses involved in care, as well as, that which services basic need. Finally, a
loved one is defined as a blood relative, such as a biological child, adopted child, or other
member of the immediate family including a spouse or significant other.
Summary and Organization of Remaining Chapters

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To substantiate the original assumption, subsequent chapters will be devoted to the
review of pertinent literature reflecting the plight of caregivers coping with autism, mental
illness, and degenerative neurological disorders, such as multiple sclerosis.
Conclusions and suppositions drawn may serve to drive the investigative quality of the piece, as
well as, assist the reader in formulating additional possibilities.
Chapter two will be devoted almost in its entirety to the review of the 50 or more
research studies which have attempted to gain insight, answer questions, and devise methods of
measuring this human condition along a continuum of statistical data. The second chapter, is
devoted to drawing fresh insight from the literature review and, hopefully, creating a pathway for
further study and practice. In the alternative, little evidence may be found to suggest that further
examination is necessary. This will be addressed in the last chapter.
In chapter three, conclusions are typically drawn from the literature and the additional
insight that the thesis’ interpretation of it provides. As such, non-statistical determinations
discern the implications derived from the work. This will be accomplished by a careful review
of the data, the search for and gathering of results, and the reporting and citation of the results for
each subset of devastating diagnosis.
Limitations will be discussed in order that the work will exhibit transparency and
integrity. In doing so, the reader may not only draw his or her own conclusions, but will,
hopefully, observe the validity of the evaluation. As well, the limitations themselves can offer
implications for future research, another valuable aspect of the thesis writing exercise and
foundational to research overall. In reality, acknowledging the imperfections in the investigative
process which belie the original supposition is at the heart of the learning process and the overall
purpose of research.

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Next, chapter three will address the research findings, providing for an organized and
coherent examination of the results in light of the hypothesis, the original impetus for
investigation. From there, a sound summary of the thesis serves to provide a road map
delineating that which occurred previously and that which is to come. Further, the summarized
material provides the reader with an overview of the entire work offering a shorter, more concise
sampling of the entire work, as well as, imparts key information that perhaps was overlooked or
unclear initially. The summary, additionally, confers the affirmation or contradiction of the
research with regard to the original hypothesis. This, then, should flow into the conclusions
drawn from the research, suppositions, assumptions, predictions, and outcomes of the thesis.
Here the questions proposed by the hypothesis and research questions supplied in the
corresponding section of chapter one are acknowledged, addressed, and answered. In doing so,
the purpose of the work is further revealed and invites fresh perspectives.
In the process of conducting research and reporting it in this forum, a certain amount of
knowledge and skill is attained. This creates an opportunity to offer comment regarding the
imminent future of study in the chosen area. The thesis, then, becomes an additional reference
point for others who might study in the field (California Southern University, 2015).

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Chapter 2
Review of Related Literature
Autism
According to the World Health Organization (WHO), as of September 2013, one in 160
children are diagnosed with an Autism Spectrum Disorder (ASD) worldwide. While degrees of
functioning may vary from person to person, WHO estimates that 50% of those with autism are
also diagnosed with an intellectual disability. Nevertheless, it is parents who typically provide
informal care which often endures throughout the lifespan of either the parent or the child
(World Health Organization, 2013). This can result in stresses and strains beyond those
routinely endured by parents caring for a typically developing child. Whereas, parents of
typically developing children (TDC) house, feed, clothe, transport, and financially support their
offspring for between 18 and 20 years, parents of children with ASD are engaged in care and
provision of needs for 50 or more years, depending on life span. Moreover, children with ASD
require additional time, preparation, thought, energy, and planning in terms of everyday activities
that most parents take for granted, such as performing instrumental and basic activities of daily
living, social outings, school attendance, and virtually any activity in which people engage
(Taylor Dyches, Harper, Olsen Roper & South, 2013). Every area of living is affected.
According to The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-
5; American Psychiatric Association, 2013), a diagnosis of Autism Spectrum Disorder (referred
to as ASD or autism, henceforth) is determined by exhibited deficits in social and
communication skills such as inappropriate responses in conversation, inability to correctly
interpret non-verbal cues, and difficulty establishing and maintaining age appropriate
friendships. Further, autism is responsible for compelling its sufferers to exhibit over-
dependence upon routines, hypersensitivity to change, and intense focus on inappropriate items,

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often ideas and topics of intense and exclusive interest or inanimate objects, such as fans or other
items that capture the attention and are visually stimulating. A diagnosis of ASD is determined
based on these and other factors such as daily functioning and is subcategorized on a spectrum
from mild to severe. Since autism is most evident in areas of social engagement and
communication, those closest to the individual diagnosed with this condition are most
profoundly affected by its manifestations. This is especially true for parents and siblings. In a
2014 study conducted by researchers at Brigham Young University in conjunction with Alpine
Clinic, 172 families were surveyed by questionnaire regarding their experiences raising typically
developing children and those with disabilities, such as autism, Down syndrome, and multiple
disabilities. Parents in this study reported higher levels of caregiver burden and stress, as well
as, lower levels of sibling intimacy, nurturance, and pro-social behavior (Roper, Alfred,
Mandleco, Freeborn, & Dyches, 2014). While there were also fewer reported incidences of
quarreling and competition than in families with TDC, there was also fewer incidences of
empathy than in families raising a child with Down syndrome (Roper et al., 2014). For parents,
incidences of marital strain was derived from the outweighing of negative to positive
experiences. This was determined by the results of Robinson’s Caregiver Burden Index (1983),
a 13 item questionnaire that was administered to participants in this survey.
From a Family Systems Theory perspective, since the individuals which comprise the
family unit are heavily embedded in its structural climate, the various subsystems are affected by
overall tone of each and every interaction. Stressors, by reason of their insidious nature, tend to
send shockwaves throughout a system, which, over time will change the complexion of the living
organism that is the family. This is precisely what was determined by the Caregiver Burden
Index. With its awesome demands, scarcity of resources, and inadequate supports, caregiving

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parents reported continuous feelings of overwhelm and less marital satisfaction while siblings of
children with ASD reported markedly fewer aspects of sibling bonding and corresponding
relationship characteristics than siblings of children with Down syndrome (DS), other disabilities
(OD), or TDC (Roper et al. 2014).
In an earlier study, conducted at Brigham Young University in 2013, 101 mother-father
dyads raising at least one child with ASD submitted online questionnaires regarding factors
related to the need for respite care. While the results unquestionably highlighted the benefits of
respite on marital and familial quality of life, the questionnaire responses unequivocally
emphasized the daily stressors which impacted ASD families. Among them were reduced
parental adaptive functioning related to the behavior of the affected child or children, need to
reduce or eliminate employment, limits placed on family opportunities for socialization,
community, and leisure activities, greater family disharmony, dependency and management
concerns, and life span burden of care ( Harper et al., 2013).
Similarly, in Romania, ASD research was conducted utilizing a sample size of 100,
comprised of 50 men and 50 women, ages 27-53, parenting a child or children with ASD, aged
four to 17 years. The purpose of this particular study was to determine the effects of an autism
spectrum diagnosis on family resilience. Several aspects of family resilience were examined and
included effects of ASD on family functioning, marital satisfaction, social interaction, financial
strain, secondary stressors, uncertainty and ambiguity, and loss of hopes and dreams. Family
resilience was defined as a “competence-based and strength-oriented conceptual family
paradigm” (Duca, 2015, p. 73). Resilience was contextualized as the ongoing familial responses
to the autism diagnosis and resulting efforts to cope thereafter. This piece relied on several
earlier studies to conceptualize the myriad of issues related to components of family coping and

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the range of after-effects instigated by a member’s ASD diagnosis in a Family Systems
theoretical context. It concluded that significant correlates between the additional strains of
caring for a child with autism were negatively affecting family communication, problem solving,
connectedness, and spirituality. From a Family Systems perspective, several key aspects of
optimal family functioning such as communication, problem solving, solution employment, and
conveyance of feelings and facts tend to be severely tested under these circumstances over time.
Marital adjustment, defined as the “couple’s ability to be happy and satisfied, as well as,
accomplish significant tasks related to marriage” was also negatively correlated to the presence
of a child with ASD, as parents in this situation reported significantly higher marital stress and
stronger disagreements than parents of non-disabled children (Duca, 2015, 74). Further, in this
and other adjunct studies, it was determined that the child’s behavior was often intensely
experienced by the parent, particularly the mother, which added to the increase in stress levels
and decrease in marital satisfaction in families having one or more children with ASD compared
to those without (Duca, 2015). Related to the intensity of experience involved in the behavioral
difficulties of children with ASD are not only the concerns with day to day activities and
restrictions imposed by the condition on the affected child and his or her siblings, but the
uncertainties involved in contemplating the future for such a child, as well as, grief associated
with the losses involved in such a diagnosis. As autism introduces and exerts more contextual
demands, such as social implications, safety, detailed advance planning, and additional concerns
for the affected child and his or her siblings, couples become aware that the relationship is often
being tested beyond its outer limits. To cope with an often widening distance between the
partners and meet the lifelong demands imposed by the condition, often a tag-team approach is
developed. This has been found to elicit a couple of overall responses. In couples wherein the

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child’s behavior tended to elicit a more intense emotional response, where there was
ambivalence, or there were efforts to restore or maintain individual or dyadic homeostasis, there
appeared to exist greater psychological distress and less relationship quality. Where a more
passive, detached appraisal of the child’s behavior existed, parents, and, thus, families tended to
adapt to the challenges of raising a child with ASD. Curiously, though, in many couples, as the
demands and singular focus of raising an affected child lessened with the age of the child, even
though care was a lifetime commitment, a deeper intimacy and commitment in addition to
confidence in the resilience of the relationship began to develop (Duca, 2015).
Investigated from another perspective, caregiver strain was viewed from the effects of
sensory features in ASD. Sensory features were defined for purposes of this study as the unusual
behavioral responses to sensory input most common in ASD and included hyper-sensitivity to
everyday sounds, diminished response to stimuli, or pleasure derived from certain stimuli (Kirby,
White, & Baranek, 2015). Caregivers, usually parents, indicated that these behaviors alone, and
independent of the many concerns elicited in caring for children with ASD, positively correlated
with a negative impact on their well-being. They cited that the necessity for extra preparation for
virtually any activity limited family activity participation and contributed to worry for the well-
being of the affected child, as well as, that of other TDC in the family (Duca, 2015; Kirby et al.,
2015).
While the long term effects of caregiving in autism have yet to be substantiated via
longitudinal research (Ruiz-Robedillo & Moy-Albiol, 2013) in the short term, other implications
related to long term unavoidable stress begin to emerge. One such effect under consideration is
the effects of chronic stress on the sympathetic activity of the autonomic nervous system. This
simply refers to the part of the human body that is responsible for organic and other functions

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that are not consciously controlled by the organism and, in particular, it’s sympathetic activity
such as digestion, cardiac rhythm, and lacrimal production, among others (Washington
University, 2014). In caregivers of the autistic, electro-dermal activity (EDA) was measured via
electrode as an indicator of sympathetic activity. As predicted, caregivers exhibited lower EDA
in response to acute anxiety and identified higher levels of depression, trait anxiety, anger and
somatic symptoms. Higher EDA was related to negative moods and more severe somatic
symptoms. Overall caregivers of individuals with autism reported higher stress levels and poorer
health than those of individuals having children without DD. The study concluded that in ASD
caregivers, over time, a habituation response to chronic stress develops in which the individual
exhibits a hypo-reactive response to the myriad of stressors that bombard their systems daily.
While this phenomenon may offer a short term protective response, the blunted psychological
and physical stress responses contribute to maladaptive functioning and overall poor health
(Ruiz-Robledillo & Moya-Albiol, 2013).
ASD affects many aspects of family life and is not limited to the physical and
psychological impairment of parents (Ou et al., 2015). Financially, families of children with
ASD were solicited for a research project which aimed to investigate the monetary cost of ASD.
Altogether 883 families participated. Of these, 459 of these families contained one or more
members with autism and 424 families had TDC. Researchers in this study compared statistics
for families in the United States who were raising a child or children with autism to those in
urban China as the lifestyles, available services, and cost of living were judged comparable. On
average, parents of children with autism lost $6200.00 annually or 14% of their reported income
due to job loss or reduction of work hours as a result of the demands of care. ASD affected
families were 9% less likely to have both parents employed and had 21% or $10, 416.00 less

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earned income annually than parents of children with other health issues. In families where the
children had no such physical, developmental, or psychological conditions, the income disparity
was even more significant. In these families, the annual income was fully $17, 763.00 or 28%
greater than that of families raising an autistic child or children. This was often attributed to the
cessation of employment or lost opportunity due to the demands of caring for the affected family
member or members. The educational level of the parents did not significantly mitigate the
financial burden or loss of employment. To make matters worse, the out of pocket expense for
education and/or medical services related to this condition placed further stressors on the family.
Often care amounted to costs in the thousands and further reduced the likelihood of a child with
autism living in a high income household. Low income families suffered additional burdens in
that specialized care, treatment, and education was unavailable to their affected family member.
In another inquiry into the financial burden associated with autism, a National Survey of
Children with Special Healthcare Needs was conducted utilizing a sample size of 196,159
households (Saunders, Tilford, Fussell, Schulz, Casey, & Kuo, 2015). In it, five screening
questions were used to determine the eligibility of the family member’s condition to meet the
criteria with regard to a developmental, intellectual, or concurrent disorder under consideration.
A positive response to at least one question determined eligibility in addition to the duration
criterion of 12 months or longer. Researchers concluded that the financial considerations of
caring for a person with ASD were considerable, with a lifetime estimated price tag of $1.4
million dollars.
In Oman, similar results were obtained in that low income families (LIF) sacrificed 15%
of their monthly wages paying for childcare for their affected family member. The out of pocket
expenses for these services was roughly the same for middle income families (MIF) (Al-Farsi et

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al., 2012). Lower income families (LIF) suffered the most financial burden related to job loss
and income reduction due to the demands of caring for a child with ASD at approximately 48.5%
of loss of wages. The LIF suffered disproportionately due to out of pocket expense, time spent
in informal care, and lost income opportunity. This particular study placed the financial burden
of care at 35 billion dollars annually, calculated in U.S. funds. The article further stated that
according to the World Health Organization (WHO), autism ranked higher than type I diabetes,
childhood leukemia, and cystic fibrosis in a hierarchy of burden of care. Moreover, in Oman, as
in other parts of the world, parents cited autism as a major cause of disproportionate burden in
terms of lost income opportunities, downward social mobility, and psychological detriments.
Those that suffered the most, in the majority of cases, were LIF (Al-Farsi et al., 2012).
Other aspects of life are not immune to the effects of autism, as it pervades every living
domain. For example, and, as mentioned previously, siblings of children with ASD report
experiencing more negative interactions with their siblings as compared to siblings of children
with Down’s syndrome ( Roper et al., 2014). From a Family Systems perspective, these
interactions profoundly affect the well-being of all parties because the family must adapt to the
environment, which, in this case, includes a member or members with significant cognitive,
emotional, and behavioral deficits. It naturally follows that TDC’s who are growing and learning
to negotiate boundaries, and who derive this information from sibling interaction in large part,
will likely view future relationships through the lens of the primary relationships they have with
their ASD affected sibling. As such, this outcome was substantiated by a 2013 research proposal
which posited that siblings of ASD affected children were more likely to exhibit high levels of
internalizing and externalizing behaviors, social and adjustment behavior problems, conflicts
with sibling behavior, and distressing emotions such as guilt (Green, 2013). Siblings who are

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younger than the affected child tend to be most severely distressed by the environmental
stressors that are endogenous to this condition. It should be mentioned that this study discussed
the probability that in addition to the family stressors having greater impact on the younger
siblings, there is evidence to suggest that there is a genetic basis for ASD as siblings of ASD
affected children often manifest social and cognitive deficiencies, neurocognitive and behavioral
delays, particularly with executive function, as well as, repetitive behaviors much like the
affected sibling. Subsequent research has indicated that elevated levels of autistic traits in
siblings represent potential markers of broader autistic phenotypes (Green, 2013). The literature
also cites a variety of previous studies that have produced both positive and negative outcomes
for siblings of ASD affected children. Finally, overall, mothers of children with disabilities have
tended to report significantly reduced warmth and closeness in sibling relationships than mothers
of TDC (Allison & Campbell, 2015). As indicated in the previously mentioned study, here too,
younger siblings were identified as being most severely affected by their sibling’s condition.
Most individuals, upon inquiry, would affirm the importance of social support in leading
a balanced life. This is a universally regarded axiom. For those who are fortunate enough to
have the support of either friends or relatives or, ideally, both, the rigors of daily living are
significantly mitigated and the individual is rendered more confident and secure in self-image,
self-esteem, and overall positive regard for self and others (Duarte & Pinto-Gouveia, 2015). It
would stand to reason, then, that those with high stress resulting from an ASD affected child or
children or other infirmed or psychologically vulnerable loved one would require greater
amounts of social support. Unfortunately, this is often not the case. In South Korea, mothers of
children with ASD reported financial, psychological, and emotional difficulties as a result of the
birth of their ASD affected child (Cho & Kahng, 2015). Further, they more frequently reported

24. CAREGIVER BURDEN 22
higher levels of stress, anxiety, and somatic complaints than mothers of children with other
disabilities such as ID (intellectual disabilities). Mothers of children with pervasive
developmental disorder (PDD) a condition on the autism spectrum, disclosed a lower quality of
life (QoL) due to concerns regarding the problem behavior of the child. Overall, mothers of
ASD affected children exhibited an increased risk for distress and negative outcomes in the form
of depression, social isolation, and spousal relationship dissatisfaction than parents of children
with OD. Mothers who spent the majority of each day in care-related activities related lower
QoL and psychological adjustment (Cho & Kahng, 2015). Employment was typically
impossible to maintain. As well, the behavior of the child positively correlated with parental,
most significantly maternal, distress and inability to engage in many forms of social
engagement due to concerns regarding the child (Harper et al., 2013). In the Oman study,
parents most often reported an apprehension regarding exposing their children to areas
frequented by the general public as this might attract unwanted attention (Al-Farsi et al., 2012).
Contending with these factors on a daily basis made it difficult, if not impossible to balance
home with employment, which potentiated social support, to say nothing of maintain friendships
which might serve to mitigate burden and other factors that accompany raising a child with
exceptionalities. Additionally, the increased burden produced a familial atmosphere of reduced
family cohesion, reduced family adaptability, less frequent expressions of affection, and less
marital satisfaction which is largely absent in families with TDC. The additional planning, limits
on family opportunities, and accommodations necessary for the inclusion of the ASD affected
child resulted in limits on family activities and a greater tendency to resign employment (Harper
et al., 2013). As well, the sensory features that accompany ASD such as hypersensitivity to

25. CAREGIVER BURDEN 23
external stimuli, hyper-focus on and pleasure derived from a limited range of interests or stimuli
or diminished response to stimuli impacted family function and routines (Kirby et al., 2015).
Additional care is a concern with ASD affected families that families with TDC need not
consider. For example, parents with TDC can reasonably expect their children to gain
independence sometime after the age of majority in most cases. Parents of children on the
autism spectrum had no such luxury as care was expected to continue throughout the lifespan,
unlike that for TDC (Cho & Kahng, 2015). For parents of ASD affected individuals, their
burden of care reportedly exceeded that of families of individuals with attention deficit disorder
(ADD) with or without hyperactivity (Harper et al., 2013). Among the myriad of concerns for
parents was the understanding that dependency and its management would likely occur until the
death of either the parent or the child. Often, parents must utilize a “tag team” approach to the
daily care and upbringing of the child. This carries a personal price as the marital relationship
suffers due to the almost exclusive child-focused existence. For some, this can have lifelong
negative implications for the relationship including lack of marital satisfaction and even
dissolution of the marriage (Duca, 2015). Further, it is estimated that a lifetime price tag of 1.4
million dollars measured in U.S. funds is involved in the care of an ASD affected individual
(Saunders et al., 2015). This too impacts the quality of life for the individual’s caregivers.
As individuals with ASD tend to exhibit unusual response to environmental stimuli,
parents and other caregivers spend a great deal of time and energy managing activities and other
aspects of daily living where the affected individual is involved. For example, in a South Korean
study, mothers of children with PDD, which is typically assessed as being at the lower end of the
spectrum and, thus, a comparatively milder form of autism, reported lower QoL values due to
behavioral difficulties with their children and the resulting time, energy, and emotional demands

26. CAREGIVER BURDEN 24
involved in care (Cho & Kahng, 2015). Families with ASD affected individuals sacrificed social
and community involvement due to concerns regarding the behavioral aspects of the disorder
(Al-Farsi et al., 2012) and were robbed of family and marital harmony, despite monumental
effort, due to the overwhelming task of caring for the afflicted child (Harper et al. 2013).
As ASD affected children matured and aged out of many of the collateral care services,
parents faced another set of caregiver challenges, some of which would continue throughout the
lifespan. For example, autism is identified via a series of stereotyped behaviors which cause the
individual to exhibit aberrations of behavior, communication, and social interaction. For the last
60 years, these restrictive and repetitive behaviors have been the hallmarks of the autism
diagnosis (Leekman, Prior, Uljarevic, 2011). Such behaviors are characterized by inflexibility,
hyper-focus, perseveration of interests and activities, and an overall demand for sameness.
These repetitive behaviors, manifested in motor stereotypies, speech, routines, and rituals,
continue throughout the lifespan (Leekman et al., 2011), and, as such, place undue burden on
aging parents who continue caregiving until the death of either the parent or child. In
adolescence, which is typically characterized as a time of turmoil in TDC is earmarked by higher
stress levels, decreased physical activity, unsafe sexual practices, and suicide more so than their
typically developing peers (Strunk, Pickler, McCain, Ameringer, & Myers, 2014). In addition to
the uncharted waters of risk taking, experimentation, and efforts at independence in adolescence
and young adulthood, parents of ASD affected individuals must contend with these in addition to
the continued communication issues, learning difficulties and inappropriate, often violent,
behavior associated with this condition. As parent advocacy for ASD ages out with the
achievement of consent and majority status, parents are multiply burdened with the lack of
respect they receive from unqualified professionals within the medical community, fragmented

27. CAREGIVER BURDEN 25
care, hurried appointments, lack of concern regarding long term effects of pharmaceutical use,
the ongoing self-destructive behaviors of their child, and lack of resources for parents and
maturing ASD affected individuals (Strunk et al. 2014). Even when assisting a maturing ASD
affected adolescent or young adult in preparing for the future via higher education and other
employment achievement activities, caregivers experience inadequacies in services offered, a
higher dropout rate, and reduced employability (Van Hees, Moyson, & Roeyes, 2014). This is
due to the demands like overwhelming amounts of information, unfamiliar surroundings,
organization, social rules and expectations, keeping pace with academic or employment
expectations, others’ perceptions, awareness of social isolation, and co-morbid disorders (Van
Hees et al., 2014).
Despite the overwhelming amounts of information describing caregiver burden, there
were some aspects of the research which suggested, however minimally, that caregiver burden
may be mitigated by the following factors. First, respite was cited as a positive correlation to
improved marital quality in couples raising an ASD affected child. Harper et al. (2013) noted
that the more hours of respite care afforded an ASD affected family, the greater the improvement
in the marital relationship. Second, the family resilience literature suggested that the coping
style of the couple may have a positive or negative affect on the quality of both the relationship
and functioning of the family (Duca, 2015). For example, it was noted that efforts to maintain
the partner’s well-being or dyadic functioning was associated with chronic illness and mental
disorders. Moreover, the Dutch literature would suggest that parental autism, attention deficit
with or without hyperactivity disorder (ADD/ADHD), or in combination negatively affected
family functioning to a greater degree when compared to families with TDC than ASD with or
without ADD/ADHD in the children (van Steijn, Oerlemans, van Aken, Buitelaar, Rommelse,

28. CAREGIVER BURDEN 26
2015). Third, in contrast to the literature which cites autism as having more significantly
deleterious effects on parental and family functioning as compared to OD, a 2015 secondary
analysis based on a 2009-2010 National Survey of Children with Special Care Needs conducted
in the United States indicated that parents of children diagnosed with both ASD and ID were the
most likely to reduce or eliminate employment and experience financial difficulties as a result of
it (Saunders et al., 2015). Fourth, neurologic studies conducted in Taiwan determined that
actively confronting, planning, and supressing competing activities moderated the effects of
caregiver burden and depression in mothers of ASD affected children (Mental Health Weekly
Digest, 2015). Fifth, the Green (2013) study which investigated the social and behavioral
adjustment of siblings of individuals with autism cited six previous studies which pointed out the
benefits of having a sibling with ASD, noted that loneliness in some siblings of ASD affected
individuals was reported with less frequency than in families of individuals with Down’s
syndrome and TDC. As well, it was determined that in intact, high income families ($81,000.00
USD or greater) who received high levels of social support, positive outcomes were more likely
to be reported. Finally, in the South Korean study, it was noted that the perception of caregivers
activities, as opposed to the activities themselves, was related to lower reported QoL and
psychological adjustment (Cho & Kahng, 2015).
Of course, as in any research vehicle, there are limitations which, while cited to preserve
the integrity of the information, can color the results, as well as, suggest future avenues for
research. In some instances, methodological limitations, which were cited to disclose the
possibility of bias, were factors in a number of cases. Among these cited were heterogeneity and
homogeneity of sample, cross sectional nature of study, lack of pre and post diagnosis
psychological measurements of parental functioning, insufficiencies in sample size, and limits in

29. CAREGIVER BURDEN 27
generalizability of results (Strunk et al., 2014; Van Hees et al., 2014; Cho & Kahng, 2015; Duca,
2015; Kirby et al., 2015; Ou et al., 2015).
Certainly, any study worth undertaking must have some intended purpose. Most often
research lends itself to further research, treatment modalities, in roads with policymakers, and
advances in stigma reduction. In the case of autism and its effects on caregivers, all of these
purposes were accomplished to a greater or lesser extent. For example, many or most of the
research narratives outlined here, regarding ASD, resulted in recommendations for lifespan
investigation and treatment protocols, long term support, education, and therapy for parents of
ASD affected individuals regardless of income, therapeutic practices which serve to advance
problem solving, social support, and communication skills in ASD affected families, further
investigation of specific sensory related accommodations, implementation of emotional and
stress management techniques early in the caregiving process, implementation of evidence based
services to reduce likelihood of concurrent mental health disorders interfering with personal and
academic success, future intervention studies and initiatives which recognize and utilize the
expertise of the parent, creation of a centralized medical delivery system which actively
communicates, advocates, and coordinates the care needs of ASD affected individuals with
collateral therapeutic interventions and professionals, and mandates which compel clinicians to
undertake more comprehensive educational protocols with regard to ASD (Ruiz-Robledillo &
Moya-Albiol, 2013; Strunk et al., 2014; Van Hees et al., 2014; Cho & Kahng, 2015; Duca, 2015;
Kirby et al., 2015).
Multiple Sclerosis
Multiple Sclerosis (MS) is a progressive immune-mediated condition which typically has
its origins in early adulthood. It is chronic, debilitating, and deprives sufferers of productivity

30. CAREGIVER BURDEN 28
during the stage of life where it is most prevalent. Further, the progressive, inflammatory
demyelination and degeneration, which impairs signal conduction, is often unpredictable in its
course and manifestation, causing relapsing, remitting symptoms and exacerbations, which, over
time, may lead to more rapid progression of the disease and resulting deficiencies. The
functional deficits which accompany MS can include, but are not limited to, mobility
impairment, cognitive deficiency, bowel and bladder incontinence, difficulty swallowing, vision
loss, speech anomalies, and sexual dysfunction. Less obvious impairments include chronic pain,
weakness, fatigue, sensory loss, depression, and spasticity (Dunn, 2010). Every aspect of the MS
sufferer’s life is affected to varying degrees, but the losses can multiply to represent a profound
effect on the individual’s quality of life (QoL) and that of their family. Among these losses are
independence, employment, financial security, social involvement and support, relationship
participation, and self-esteem (Dunn, 2010; Koutsouraki & Michmizos, 2014).For the patient,
MS represents a downward spiral into a life of uncertainty, inability to trust one’s body, and the
ever-present knowledge that one’s hope and dreams are largely unachievable. Immediately, post
diagnosis, the individual feels as though their sense of reality is skewed and progresses to
intermittent sorrow, depression, and externalized rage. Fear of abandonment follows as the
individual soberly assesses his or her own abilities to engage in those aspects of daily life that
most take for granted; relationships, employability, and self-care. Self- esteem begins to
plummet and the desire to give up and give in becomes paramount as memory, emotion, pain,
fatigue, weakness, and declining physical ability fluctuate. Worse yet is the tendency of the
patient to encounter and endure misunderstanding and invalidation from family, friends, and
medical staff who characterize his or her affect and behavior as a manifestation of neurosis
(Koutsourakis & Michmizos, 2014). Further, the patient, while struggling with the

31. CAREGIVER BURDEN 29
manifestations of the illness, often fears abandonment from family and friends, due to aspects of
the illness and accompanying affect. This, of course, contributes to outward manifestations of
depression, which engenders increasingly dismissive attitudes from those in the patient’s
immediate circle of support (Roubinov, Turner, & Williams, 2015). Add to this the financial
insecurity due to lost productivity and receiving a fixed, often inadequate income, and the life of
the MS patient can be a very bleak picture, indeed.
Secondary victims of MS or “hidden patients” include spouses, children, partners, and
others who engage with the patient daily. These individuals, often informal caregivers, are
impacted by this condition in a myriad of aspects, as they must cope with the changes in their
role as dictated by the needs of the patient (Koutsourakis & Michmizos, 2014). First, and as
mentioned previously, externalized rage precipitates fear in the patient of abandonment, while
suppressed anger can manifest as depression or, for the more insecure patient, dependent, invalid
behavior. Further, the guilt experienced by the patient regarding the burden he or she is placing
on the spouse, partner, and others can devolve into a downward spiral of dishonesty. This has
profound implications for the spousal relationship as he or she is placed in a caregiving role, can
experience feelings of resentment regarding overall loss of freedom, leisure, and pleasurable
activities or, in the alternative, struggles simultaneously with the desire to abandon the
relationship and the guilt that results from these contemplations. Often the caregiving partner
will compensate for the guilt provoking desires by becoming over-protective in hopes of
assuaging such feelings. Children may be even more profoundly affected as they struggle to
understand the dynamics of their MS affected family or may be confused and marginalized if
their parents choose to shield them from the knowledge that Mom or Dad is sick, believing that
they are protecting young minds from distressing information (Koutsouraki & Michmizos, 2014;

32. CAREGIVER BURDEN 30
Hughes, Locock, & Ziebland, 2013). Children may exhibit symptoms of depression and
behavioral problems predicated on the idea that their family is somehow different from others
and that they must comply with the harboring of a family secret. Other children may assume the
role of primary or secondary caregiver to assist them in coping with a situation that is well
beyond their control. This may result in either compassionate, mature adults in later life, or
hyper-responsible, troubled adults who were robbed of the opportunity to mature at their own
pace and have carried their troubled childhoods into adulthood (Koutsouraki & Michmizos,
2014; Dunn, 2010). This is particularly cogent from a Family Systems Perspective, as the long
term exposure to role confusion, enmeshment or estrangement, and behaviors consistent with
stressors of disease management, act in conjunction to produce deleterious effects in all members
of the family system, but enact the strongest influence on the youngest and most vulnerable
(Hughes et al., 2013; Mickens et al., 2013).
Caregivers and others in the patient’s sphere of influence, must cope with a barrage of
unintended consequences of MS. In a variety of research initiatives, it has been determined that
informal caregivers, most often women, constitute 80% of informal care received by MS
patients. Among the consequences in this instance are that the daily burden of care, which
amounts to approximately 4.6 to 12 hours per day, can and often does result in poor mental
health, lost wages and employment opportunities, deteriorating physical health due to the
rigorous demands of patient transfer and mobility assistance, isolation, anxiety, sense of loss of
original relationship, fear for the future of their loved one, and significantly reduced QoL
(Mickens, Perrin, Aguago, Miguel, & Arango-Lasparilla, 2013; Borreani, Bianchi, Pietrolongo,
Rossi, Cilia, et al., 2014 ). All of the aforementioned essentially amounts to caregiver burden.

33. CAREGIVER BURDEN 31
That is, the physical, psychological, emotional, and economic toll of providing care for an
infirmed or disadvantaged individual (Dunn, 2010).
Multiple sclerosis (MS) is associated with disproportionately high socio-economic
burden, which is estimated at two billion dollars in the United States alone, in terms of care
associated costs and lost wages. Given the instability of the disease progression, caregivers must
often abandon employment or forfeit career opportunities in order to provide care for their loved
one. In fact some research indicates that the cost in lost employment alone exceed that of
healthcare, social services, and primary inpatient care and, in terms of lost productivity (33%)
and informal care (48%), equals 81%. Further, Canadian researchers have determined that these
sacrifices and roles are primarily borne by women (Hughes et al., 2013; Dunn, 2010). Still
informal care is a hidden and valuable source of support, enabling patients to remain in their
homes for as long a time as possible and, as such, is estimated at approximately 80% (Bayen,
Papeix, Pradat-Diehl, Lubetzki, & Joël, 2015). Since the trajectory of the illness typically results
in progressive disability and a variety of co-morbidities, it is estimated that patients’ lives are
shortened by 5 to 10 years. Of the 9% that live beyond age 65, a barrage of health issues such as
aspiration pneumonia, urinary tract infections, complications due to falls and fractures, and
secondary sepsis as a result of pressure ulcers contribute to little QoL for patients. Given that the
caregiver is aging and experiencing co-morbidities of his or her own, much of which is
associated with the caregiving role, the burden of MS and disintegration of QoL is a reality for
them, as well. (Bayen et al., 2015; Borreani et al., 2014; Hughes et al., 2013; Gray & Arnett,
2014; Dunn, 2010).
While the majority of the literature suggests that QoL is significantly reduced for both
patient and caregiver, it has been determined in some instances that there may be mitigating

34. CAREGIVER BURDEN 32
factors which alleviate caregiver and patient burden. First, financial security was cited as a
major alleviator of burden associated with this condition. Second, those who experienced milder
forms of MS experienced less concern and uncertainty than their more severe counterparts.
Third, among those who were able, engaging in meaningful activity contributed to an improved
QoL. Fourth, social support and engagement, for the fortunate, also contributed to greater QoL
(Gray & Arnett, 2014).
Among caregivers, though some experienced resentment and despair at the sacrifice their
role represented, not everyone viewed caregiving as burdensome. There were those who
expressed pride in their caregiving ability and function in their loved ones’ lives. Others
expressed the attitude that if they were the patient, their loved ones would do as much or more
for them. Finally, there were those that were able to fit caregiving into a full and rewarding life,
however, this was dependent up on a variety of circumstances, not the least of which was the
severity of their loved one’s condition (Hughes et al., 2013; Bayen et al., 2015).
Since this particular area of research (MS) is relatively new and evolving, few studies
were available comparatively and few limitations were noted (National Institutes of Health,
2015). Some areas which suggest further investigation included the use of larger sample sizes,
exploration of sexual dynamics, the informal caregiver’s resistance to institutionalized or more
formal, compensated forms of care, greater physician involvement, use of alternative and
complementary treatment, and greater homogeneity of samples (Dunn, 2010; Mickens et al.,
2013; Borreani et al., 2014; Bayen et al., 2015; Roubinov et al., 2015).
Implications for future practice yielded more plentiful results. First, the focus of research
was directed toward support, training, intervention, and therapeutic services for caregivers.
Second, those symptoms and deficits which create the most burden for caregivers were targeted.

35. CAREGIVER BURDEN 33
Third, prioritization of needs for both patient and caregiver was indicated as a necessity (Dunn,
2010). Additionally, the obligation of health professionals to recognize the “hidden patient” or
family members of the MS sufferer and address their needs was highlighted (Koutsouraki &
Michmizos, 2014). Further, it was noted that guidelines for homebased palliative care
procedures and changes to public health policy were important to implement (Borreani et al.,
2014). Other considerations for alleviation of burden of care in MS included the conduction of
longitudinal research to gain greater understanding of issues of aging with MS and related
neurological phenomenon which will inform treatment, recognition of the value of informal care,
especially with regard to billions of dollars in system wide savings, development of interventions
for anxiety management in caregivers and patients, and improved techniques for accessing
social, emotional, and psychological support in diverse communities, as well as, for the
disadvantaged (Borreani et al., 2014; Gray & Arnett, 2014; Koutsouraki & Michmizos, 2015).
Serious Mental Illness
Serious Mental Illness (SMI) affects 13 million individuals in the United States alone, is
the leading cause of disability, and accounts for 25% of years lost to disability and premature
death. Often, SMI, has its roots in adolescence and young adulthood which corresponds to the
developmental stage in life where an individual seeks independence and attempts to embark on a
career, develop a long term relationship, and create a home apart from his or her parents (Song,
Mailick, & Greenberg, 2014; Bauer, Gottfriedsen, Binder, Dobmeier, Cording et al., 2011). As a
result, many adult children with SMI do not marry and continue to live with family, typically a
parent. It is estimated that in the 50 years since deinstitutionalization in the United States, 50 –
90% of SMI patients reside with family (Song et al. 2014; Suro & Weisman De Mamani, 2013).
Often families caring for affected individuals must contend with a variety of unpredictable,

36. CAREGIVER BURDEN 34
distressing, and stressful circumstances connected with the unpredictability of the illness, lack of
insight and treatment compliance on the part of the patient, concerns for the patient’s well-being,
and illness specific behaviors (Baeur et al., 2011; Mak & Cheung, 2011). Further, there is
emerging evidence to support the notion that long term, unabated burden on the part of the
caregiver, often expressed as over involvement and high expressed emotion, can influence
relapse in patients with schizophrenia (Adewuya, Owoeye, & Erinfolami, 2011). Moreover, as
in the case of obsessive compulsive disorder (OCD), attempts by caregivers to relieve patients of
the burden incurred by onerous, time consuming, and distressing obsessions and compulsions,
also known as accommodation, can increase the severity of the condition and negatively impact
treatment outcomes (Lee, Steinberg, Phillips, Hart, Smith, & Wetterneck, 2015; Torres, Hoff,
Padovani, & Ramos-Cerqueira, 2012). With regard to individuals with bipolar and personality
disorders, years of undiagnosed symptoms result in distress, dysfunction, and debilitation for
sufferers and those closest to them (Bauer, Döring, Schmidt, & Spießl, 2012; Beentjes, Goosens,
& Poslawky, 2012). For individuals diagnosed with schizophrenia, episodic psychotic
manifestations, or unremitting psychotic features, coupled with lack of insight, non-compliance
with therapy, the potential for aggression toward CG and others, and suicide risk converge on
CGs’ to represent very real long term deficits in a number of life domains (Song et al., 2014;
Sadiq & Suhail, 2013).
From a Family Systems perspective, where there is illness and disability, there is
potential for destructive patterns to emerge. If a sibling is the affected individual, the other
children in the family may become either enmeshed with or estranged from him or her. Their
interactions with the individual become a matter of obligation or represents something to avoid.
Anger, guilt, fear, and sadness may become so entrenched within the psyche of the siblings of a

37. CAREGIVER BURDEN 35
child with SMI, that their abilities to cope in adult relationships may be compromised to varying
degrees. This may be significant if there are only two children in the family. The likelihood of
long term damage multiplies if a parent is the affected party. Since the interaction of the parent
with the child creates an imprint which may not be overcome, the potential for a life of
dysfunction, loneliness, and heartbreak is exponential. As Corsini & Wedding (2013, p.375)
point out, family roles exact a powerful influence on the decisions, interactions, and behavior of
children later in life. These decisions affect those with whom they enter into relationship and
have life-altering consequences for all involved and, especially, for future generations.
As previously mentioned, since individuals with SMI must reside with family in most
cases, the burden of care falls to those family members willing to assume the responsibility.
Typically, care is provided by a female family member, usually a mother (Bauer et al., 2012) and
is associated with caregiver burden (CGB), the personal costs involved in providing ongoing
assistance to an infirmed individual, who cannot otherwise manage key aspects of life (Sadiq &
Suhail, 2013). Inherent in CGB is the affect that daily interaction and responsibilities associated
with that interaction exacts on the caregiver (CG). This is known as objective burden (OB) and
is identified with reduced QoL, poorer physical and psychological health, financial burden,
family conflict, disrupted sleep, anxiety, depression, sense of loss, worry with regard to the
future of the patient, family conflict, reduced relationship quality with the patient, isolation,
shame, self-doubt, embarrassment regarding patient behaviors, secondary or affiliate stigma, fear
with regard to relapse or suicide attempts and completion, and enduring sense of loss (Suro &
Weisman De Mamani, 2013; Beentjes, et al. 2012; Möller-Leimkühler & Weisheu, 2012; Bauer
et al., 2011). Caregiver (CG) appraisal of the personal cost of care is referred to as subjective
burden (SB) and has been determined to inform the overall experience of the CG in some

38. CAREGIVER BURDEN 36
instances, as well as the relapse rate of the patient in others (Suro & Weisman De Mamani, 2013;
Möller-Leimkühler & Weisheu, 2012; Torres et al., 2012; Mak & Cheung, 2011).
Some of the literature involving SMI and CGB that was obtained for this project involves
research conducted in Europe, Asia, and Africa wherein the accessibility to service and cultural
aspects of coping can differ from those found in North America. There were similarities, as
well. For example, in Western Europe, a German study conducted by Möller-Leimkühler &
Weisheu (2012) using a variety of German language adapted assessment tools, such as the
Family Burden Questionnaire (FBQ) and the NEO Five- Factor Inventory (NEO-FFI),
determined that personality factors, such as neuroticism and agreeableness, tend to shape burden
appraisal or subjective burden. By contrast, a Portuguese study conducted by Gonçalves-Pereira,
Xavier, Wijngaarden, Papiola, Schene et al., (2013) determined that, though, a majority of CG’s
were at risk regarding burden and distress, the negative consequences of caregiving did not
preclude the existence and acknowledgement of rewards. The difference between the cultures,
though both located in Western Europe, was noted by Gonçalves-Pereira et al. in that what was
referred to as “warm-blooded” cultures, like that of the Portuguese, Spanish, and Italians, as
opposed to what the authors referred to as more “cold-blooded” cultures, when comparing
similar work done in England, the Netherlands, and Denmark, was that the subjective burden
tended to result in lower scores in comparative studies performed in the “cold-blooded” northern
countries. It should be noted that in the Portuguese study, higher objective burden in the form of
inaccessibility to services and lack of CG supports informed results. In the German study, it was
noted that belief in external locus of control was indicated in SB as was a general belief in
fatalism in the Portuguese research (Gonçalves-Pereira et al., 2013; Möller-Leimkühler &
Weisheu, 2012). One Indian study produced links between high SB, expressed emotion (EE),

39. CAREGIVER BURDEN 37
and patient relapse. Expressed emotion is based on five types of emotive expression by
caregivers and includes, critical comments, hostility, emotional over involvement, and warmth
and positive remarks. The other compared CGB in families caring for single and multiple
members with schizophrenia. High EE in caregivers was found to be a cultural phenomenon in
this particular instance as Sadiq and Suhail (2013) determined that in comparison studies with
those performed in Pakistan, wherein scarcity of mental health services, as well as, lack of
proximity to service, was linked to high EE and SB as well as more disturbed behavior by
patients. They also found that in cultures, like Pakistan, where self-sacrifice and exceeding
expectations of care were the norm, high burden of care (BOC) was reported. In India, however,
no such relationship between EE and burden was determined. Another Indian study, which
compared BOC and the benefits of psycho-education in families that were caring for one
individual with schizophrenia with those caring for multiple patients with this condition, found
that CGB was predictably greater in families of multiple schizophrenia suffers than those with
one. What was interesting was that Chakraborty, Bhatia, Anderson, Nimgaonkar, and
Deshpande (2014) found that, while burden was greater in the multiple affected families, their
level of coping was equivalent to that of the single affected family. It was also determined in
post treatment analyses that both single and multiple patient CG’s improved in five out of seven
domains on the Coping Check List in the areas of problem solving, distractions, acceptance, and
denial. Finally, Grover and Dutt (2011) examined the perceived burden and QoL in CG’s of
individuals with OCD in India. Using the Yale-Brown Obsessive Compulsive Scale (Y-BOCS)
and the Family Burden Interview Scale (FBIS), they learned that greater OB and disruption to
leisure and family time resulted in reduced QoL. Financial burden, inability to sleep either due
to stress or condition specific behavior, physical pain, and reduction in coping mechanisms. In a

40. CAREGIVER BURDEN 38
social structure such as the family centered culture found in India, much like the Mediterranean
cultures studied in the Gonçalves-Pereira et al. research, high SB was linked to over-involvement
in the form of accommodating the OCD rituals in this instance. With regard to bipolar disorder,
Bauer, Gottfriedsen, Binder, Dobmeier, Cording et al. (2011), noted that in studies conducted in
India, New Zealand, and Germany, bipolar disorder was found to represent a significantly greater
stress inducer than unipolar depression. Participants in interviews here cited CGB with regard to
patient relapse, employment, finances, legal matters, co-parenting, social relationships, and
maintaining a relationship with the patient. Other studies noted in this article that lack of
cooperation by the patient, manic and positive symptoms, and non-compliance with treatment
was cited as most troubling and a major source of CGB. Patient interviews revealed that 48% of
patients were either partially or fully non-compliant in adhering to treatment, particularly with
regard to medication. As a result, many patients were either wholly ignorant or held
misconceptions about the effects of mood stabilizers. For CG’s caring for individuals with
personality disorder (PD), in addition to their loved one exhibiting some similar features of
bipolar disorder (recklessness, aggression, and lack of insight) there were illness specific
behaviors which multiplied CGB. Bauer, Schmidt, Döring, and Spießl (2012) interviewed 30
CG’s of individuals with PD to determine their level of CGB at an inpatient tertiary referral
center in Bavaria, Germany. After applying a number of statistical analyses, including
classification and regression tree analysis, Bauer et al. determined that in addition to the lack of
research on CGB in PD and non-existence of support, 30% of the sample expressed uncertainty
regarding interaction with the patient, 27% expressed doubt and emotional estrangement in the
relationship with the patient, 13% cited sexual problems, 10% expressed concern regarding
patient infidelity or potential for abandoning the relationship, and 10% noted lack of symmetry

41. CAREGIVER BURDEN 39
in the relationship. In Asia, Mak & Cheung (2011) compared the role of affiliate or secondary
stigma with SB. This was a relatively new concept in that, while the other articles mentioned the
embarrassment or anxiety that CG’s experience with regard to the behavior of the individual with
SMI, they did not deal with this phenomenon in great detail, nor did they give it a name. This
was as true of the North American research as that of Europe and India. Mak & Cheung detailed
that feelings of shame and inadequacy and resulting behavior in Chinese CG’s, explaining that
face concern, the idea that preserving one’s social image and worth based on fulfilling social
expectations inherent in a specific role, is at the heart of this cultural construct. Further, “face”
when extended to another is predicated on the congruence between the social appraisal of his or
her lifestyle, actions, and those closely associated with him or her. Mak & Cheung referred to
this as “mianzi. Closely associated with mianzi is “lian” or the moral and ethical code imposed
by one’s social network and the shame that results from failure to comply. With regard to SB,
Mak & Cheung found that affiliate stigma partially mediated psychological distress. In other
words, it was only partly responsible for feelings of shame, despair, and embarrassment in
sample respondents. However, Mak & Cheung also found that affiliate stigma fully mediated SB
due to internalized psychological stigma and that distress was only partially mediated because of
efforts by CGs’ to avoid face losing situations. Finally, the African study focuses on SB and
psychopathology among CGs’ in Southwest Nigeria. Researchers Adewuya, Owoeye, and
Erinfolami (2011) recruited CG’s who accompanied patients from three psychiatric outpatient
centers. Utilizing the Brief Psychiatric Rating Scale (BPRS), the General Health Questionnaire
(GHQ-12), and the Zarit Caregiver Burden Scale (ZCBS) they were able to determine that one-
third of CGs’ were coping with significant psychopathology, that employment was a factor in

42. CAREGIVER BURDEN 40
CGB, male CG’s scored higher in SB, and that the only correlate between CGB and patient
pathology was poor functional levels on the part of the patient.
Much of the North American research located for this project focuses on CG
accommodation in OCD, OB and SB in Caucasian verses African-American and Hispanic
communities, and work-family conflict CGB in SMI. Lee, Steinberg, Phillips, Hart, Smith et al.,
(2015) examined the effects of accommodation in OCD. The authors noted that OCD can be a
very treatment resistant condition in which over 50% of sufferers are classified as severe.
Further, the study asserted that accommodation which takes the form of reassuring the patient
that the ritual was performed correctly, performing the ritual for the patient, enabling the patient
to avoid the ritual, and/or performing the ritual for the patient. Accommodation, the research
determined, is associated with poorer treatment outcomes for the patient and additional CGB for
the CG. Oddly, though Lee et al. found that accommodation was positively correlated in
relationship satisfaction by both CG and patient, yet it was also responsible for high CGB and
the ensuing depression, ruminating, being entreated to assist in rituals, stressful family
relationships, difficulty in maintaining social relationships, increased anger, and frustration that
accompanies it. For CG’s of patients with bipolar disorder, CGB, like in the foreign studies, can
be much worse. Beentjes, Goosens, and Poslawsky (2011) conducted a secondary analysis of
previously conducted research regarding CGB in bipolar disorder in order to develop a
foundation for nursing intervention. As the literature pointed to manic symptoms as the most
burdensome overall, Beentjes et al. determined that CG distress was relegated to the following
areas. First, CG’s cited aggression, lack of need for sleep, reckless behavior, lack of insight, and
unpredictability as informing CGB. Second, CG’s cited lack of professional support as having
increased CGB. The lone South American study that was selected for this project was conducted

43. CAREGIVER BURDEN 41
at an outpatient clinic at the Botucatu Medical School, São Paulo, Brazil. Forty seven patients
and their CGs’ submitted questionnaires which reflected sociodemographic data and the nature
of the patient CG relationship. The Y-BOCS was implemented to measure OCD and the ZBI,
the Family Accommodation Scale (FAS), and the Self Report Questionnaire (SRQ-20) to assess
CGB, level of accommodation offered to patient, and psychological morbidity of the CG,
respectively. What the researchers learned was that escalation of OCD symptoms, as well as,
CGB was related to all six ZBI factors (interference in CG’s life, perception of patient
dependence, irritation/intolerance, guilt, insecurity, and embarrassment). Factors one, two, five,
and six were related to CG’s psychological morbidity. Factors 5 and 6 corresponded to gender
(typically female) and factor 5 to CG’s relationship with the patient. Higher education was
linked with factor 6, residing with the patient with factor 3, worse self-evaluation of health with
factors 1, 5, and 6, and occupational status (typically unemployment due to demands of care)
with factors 1, 2, 5, and 6.
Other research on the subject of SMI and OB involves the issue of work-family conflict
for parents of adult children with SMI. Song, Mailick, and Greenberg compared 100 parents of
adult children with SMI with 500 parents of using data from a 50 year longitudinal study
performed in Wisconsin know, appropriately enough, as the Wisconsin Longitudinal Study. This
research is the only longitudinal study that was located for this project (as most were cross-
sectional or were secondarily analyzed from other sources) and so bears some additional
examination. In 1957 a random sample of 10, 317 graduates from Wisconsin high schools and
5,823 randomly selected siblings of the graduates were surveyed in 1957, 1975, 1992, and 2004
and 1977, 1994, and 2006 respectively. In an attempt to definitively add credence to the growing
body of literature on the effects of not only work-family conflict, but this phenomenon in

44. CAREGIVER BURDEN 42
conjunction with providing care for an adult child with a disability, Song et al. compared parents
who had non-disabled adult children with parents of children with SMI. They hypothesized that
parents of adult children with SMI would have poorer health profiles than parents of unaffected
children, parents who experience negative spillover from work and inflexible schedules will
experience health declines than parents who report greater flexibility and lower levels of
negative work to family spillover regardless of their children’s condition, and the association of
negative work to family spillover will be more cogent in parents of adult children with SMI than
the comparison group (parents with unaffected children). What they learned was that mothers of
adult children with SMI reported more diagnosed illness in themselves than mothers of
unaffected children. As well, results indicated that mothers of adult children with SMI were less
likely to be married, to have more children, and to be living with the target child than mothers of
non-disabled children. Interestingly, with regard to fathers, the only difference between fathers
with a child with SMI and fathers of unaffected children was the predominance of
musculoskeletal problems, however, less than 20% of fathers of these children actually lived
with them. In fathers who experienced greater negative work to family spillover, most often
cardiovascular problems were disclosed. Finally, in instances where there was no significant
difference between the mothers of children with SMI and the comparison sample mothers of
unaffected children, it was determined that mothers having children with SMI either changed
their career trajectory or left work altogether. Accordingly, Song et al. concluded that work
related stress was a major contributor of parental health problems in parents of affected children
and contributed to a reduced quality of life for the SMI affected individual.
Finally, Suro, Weisman, and De Mamani (2013) enlarged the OB versus SB body of
work with their research into the differences between the African-American, Hispanic, and

45. CAREGIVER BURDEN 43
Caucasian communities. What they learned, while suggestive of the recommendations with
regard to support to CGs’, was interesting in terms of the contrasts that were noted in the
communities of focus in the study. Suro et al. applied the stress appraisal coping model of
Lazarus and Folkman (1984) to undertake the examination of the roles of SB and OB on negative
mental health outcomes. In this model, stress is viewed not only as an environmental force that
enacts on an organism but also the organisms response to the stressor. From there the ideas of
OB (environmental stressor) and SB (appraisal of the stressor) are born (Lazarus and Folkman,
1984). Suro and colleagues obtained a sample of 176 CGs’ of patients with either schizophrenia
or schizoaffective disorder. Of them, 29% identified as Caucasian, 10.3% African-American,
and 59.8% Hispanic. As well, 45% were mothers of the patients, 15.3% were fathers, 11.3%
were significant others, 10.1% were patients’ sisters, 6.8% were friends or long term family
equivalents, 3.8% were daughters of patients, and 2.5% were sons. The Structured Clinical
Interview for the DSM-IV Axis I Disorders (SCID-I/P) and the Brief Psychiatric Rating Scale
(BPRS) were employed to gather information with regard to cultural identity, family dynamics,
coping strategies, and other salient domains. The conclusions were that OB was significantly
related to SB and both were indicated in poorer mental health outcomes. Objective burden was
significantly related to mental health in CGs’, both directly and indirectly, via SB. Partial
mediation of SB on OB illuminated the underlying effect that appraisal has on mental health.
Culturally, African-Americans and Hispanics exhibited more favorable mental health outcomes
due to their propensity to rely on the interdependence of the community and their sense of
inclusion when appraising the burden of caring for an ill loved one. In these communities, OB is
less detrimental to SB because of the belief in and demonstration of the availability of social
support. By contrast, Caucasians exhibited poorer mental health outcomes due to the appraisal

46. CAREGIVER BURDEN 44
of autonomy as desirable and the belief that achievements are largely a function of internal
attributes such as personality traits, abilities, and intelligence. Moreover, Caucasians tended to
view caregiving as a function of overall closeness and relationship dependent in the object of
care. African-Americans and Hispanics, though they tended overall to have lower incomes and
less education than Caucasians, viewed themselves as part of a larger whole and, in doing so,
viewed caregiving as less burdensome.
Finally, among all the research that was obtained for this project regarding CGB, only
two studies examined the notion of family inclusive therapy or FITS. Shor and Shalev (2015)
examined the value of a variety of services, including, but not limited to counselling and support,
additional burden prevention, liaison and advocacy services, psycho-educational services, and
intervention efforts to incite broader system change. Their information was gleaned from focus
group and personal interviews of CGs’ from the Family Member Support and Consultation
Service Center in a southern Israeli psychiatric hospital. Though the sample was small, 10 from
the focus group and 10 personally interviewed, the qualitative findings were unequivocally in
favor of not only offering such services on a wider scale, but of broadening the services beyond
the current offering of CG liaison services. The other study, which examined family inclusive
treatment (FIT) for OCD, amounted to a meta-analysis of 29 previous works involving psycho-
education, accommodation reduction, and exposure training. Conclusively, great gains and
improvements were exhibited by family members of affected individuals. As well, these gains
were maintained over time, even when measured across acute and follow-up intervals. More
importantly, these gains were important not only in reducing CGB, but also in decreasing
accommodation, which preceded patient gains (Thompson-Hollands et al., 2014).

47. CAREGIVER BURDEN 45
The idea of the roles that OB and SB play in the experience of CGB is significant. In one
instance, appraisal, it would seem, is the key to successfully coping with burden in terms of its
long term physical and psychological health effects. However, it cannot be stated enough that
OB burden is real and does inform SB, as stated in the Suro et al., Song et al., and other studies
both foreign and domestic. Moreover, even though the importance of support has been
suggested, inferred, or stated time and again, there are several factors which preclude its benefits
in the life of the CG, namely ethnicity, community of inclusion, availability, region of residence,
and quality of professional care. Regardless of where the research occurs, the medical and
psychiatric communities rarely, if ever, address CGB (Gonçalves-Pereira; Bauer et al., 2012;
Bauer et al., 2011). Even in research undertakings which specifically address CGB, such as the
family inclusion research performed by Shor and Shalev (2015) and Thompson-Hollands, Edson,
Tompson, and Comer (2014), the implications for future practice are quite clear in the
acknowledgement that this type of professional consideration is not available, nor is it a readily
accessible commodity for those who are so burdened by the psychological, physical, emotional,
financial, personal, familial, and lifestyle toll of caregiving. As such, this research is not in great
abundance, as well. The ultimate conclusion is that caregiving takes its toll and human beings,
with all their frailties, suffer as a result regardless of personal strength, means, or advantage. As
well, over time, it appears that advantages that were enjoyed during a previous season of life,
seem to disappear as the years of caregiving ensue.
It should be mentioned that the limitations in these studies by no means deterred from the
conclusions drawn, but should be discussed in the interest of transparency. First, in the OCD
research, small sample sizes, limited generalizability, cautious interpretation of ZBI results as
this instrument was originally developed for CGs’ of dementia patients, no established causality

48. CAREGIVER BURDEN 46
due to correlational or cross-sectional nature of study, lack of proper assessment of patient
pathology, and symptom severity assessments offered by CG only (Lee et al., 2015; Torres et al.,
2012). In the research on CGB in schizophrenia, study limitations cited are lack of causality due
to cross sectional nature of research, CG personality or coping mechanisms not having been
assessed, randomized sampling may not have been representative of population, possible sample
and gender bias due to recruitment from CG organizations and sample composition having been
mostly female, lack of clinical assessment of patient psychopathology, and ratings bias due to
self-report of CG (Gonçalves-Pereira et al., 2013; Möller-Leimkühler & Weissheu, 2012). These
limitations are representational of the limitations of record in the SMI research obtained for this
project as a whole.
In conclusion, each of the three areas of examination in ASD, MS, and SMI, have
elucidated a vast array of considerations in view of CGB. There are many overlaps, many
challenges, many considerations that one who is fortunate enough to be spared this lot in life
need not consider. In ASD, there is the struggle of the parent to care for the extraordinary needs
of the child while raising siblings of the affected child, providing for the needs of the family,
maintaining relationships, and coping with feelings of loss, the burden of stigma, and the societal
expectations of an often unforgiving world. Of course, this only scratches the surface of the
dizzying myriad of responsibilities faced by parents of a non-disabled child, let alone those of the
parents of a child with ASD. Worse yet, is the awareness of the affected child that he or she is
“different” from peers and that the milestones that accompany emerging adulthood for many are
likely unattainable. In MS, the BOC demands that a spouse or significant other provide support,
care, companionship, and compassion with little expectation of these needs being met in return.
There is the continual specter of uncertainty in which the arbitrary and capricious manner of this

49. CAREGIVER BURDEN 47
illness exacts its pound of flesh in the sufferer. Life for a CG partnered with an individual with
MS can be lonely and deprived, especially if there are financial issues and other problems that
can occur in the lives of the health and the ill. Finally, there is SMI. Like autism, the parents of
a child or adult child with SMI are keenly aware of the loss of hope, dreams, and expectations
with regard to their affected child. If one is the spouse, partner, child, or sibling of an individual
with SMI, there is an enduring sense of obligation, in addition to the sense of loss that occurs
when the quality of a relationship is diminished with no hope of recovery. There is the
unpredictability of relapse, the apprehension of illness specific behaviors that accompany acuity,
and the ever present fear that the affected individual will attempt, or worse, complete, suicide.
Sometimes, relief accompanies grief in these circumstances as the suffering, loneliness, and
hopelessness of the individual with this condition is no longer a daily reminder of this harsh fact
of life.
The take away from this analysis of a vast body of work is simply this. If the disciplines
of medical science, psychiatry, and psychology exist to alleviate suffering, and the myriad of
procedures, theories, research, and therapeutic techniques available suggest that this is the goal,
then it must at least attempt to alleviate it wherever it finds it. The majority of the research
suggests that the goal of treatment is to eradicate or, at least, alleviate the suffering in the patient
wherever possible, but that the “hidden patients” or those who endure the daily BOC are largely
on their own. So, where does that leave the silent, secondary sufferer? Presently, they are
managing, coping, and muddling through the best they can in hope that those who conduct
research, those who make policy, those who advocate, and those who provide professional
intervention will recognize the debilitation that accompanies long term burden and resolve to
alleviate. Therein lies the purpose of this work. Though there are some cited benefits to

50. CAREGIVER BURDEN 48
caregiving, such as, greater compassion, empathy, and depth of character as mentioned by some
of the studies cited within this project, the overall toll that objective burden exacts upon one who,
day after day, week after week, month after month, and year after year, copes with the aspects of
life that people avoid talking about at parties or in any social venue because it is a depressing
subject and a little more “real” than people are willing to acknowledge and contemplate for any
amount of time. So much of the research covered here discusses the shame, self-doubt, and grief
that people feel as a result of the conditions of their lives, not to mention the behavior of their
loved one, they tend to isolate. This project is undertaken for these because, in truth, they are
heroic.

51. CAREGIVER BURDEN 49
Chapter 3
ResearchMethods and Procedures
This undertaking was a culmination of well over a year of contemplation, investigation,
and inquiry. Over 1,000 research articles were located, reviewed, discarded, or retained and
were obtained from the Proquest, PsycARTICLE and Psychology and Behavioral Sciences
Collection (Ebsco Host), Google Scholar, World Wide Web, or interlibrary loan. The utilization
of research librarians was essential not only in obtaining those articles that were listed in
California Southern University’s database but were only obtainable by special request, but to
assist in the dissemination of information located in said database. Naturally, they did what
research librarians do so well and suggested key words, located pertinent articles, and even, at
times, offered explicit instructions for locating hard to find items. Using key words like
“caregiver burden”, “caregiver burden in autism”, “caregiver burden in multiple sclerosis” and
“caregiver burden in serious mental illness” resulted in between 1,000 to 3,300 articles with the
words “caregiver”, “autism”, “multiple sclerosis”, and “serious mental illness” somewhere in the
abstract, article, subject or identifier/key word lists. Typically, the first 100 to 150 articles
contained information that either contained pertinent information that was germane to the topic
under consideration or only contained some of the keywords yet was wholly inappropriate. As
well, by the time the first 100 articles were reviewed it became apparent that those beyond were
becoming less and less usable, as the subject matter little resembled the chosen topic. From there
approximately 70 articles were selected and saved and, thus began the intensive review. After
ascertaining the research focus from the abstract, introduction, methods, and discussion portions
of the article, the list was further pared down to approximately 52 articles with another 12
retained for possible use.

52. CAREGIVER BURDEN 50
Each sub topic contained under the “caregiver burden” umbrella was studied primarily
from the focal point of the abstract, introduction, method, discussion, and conclusions heading
within the literature. While the results portion of the text was investigated, it was examined with
an intent to discern additional information with regard to the method and in anticipation of the
conclusions of the study. This position was assumed due to the non-statistical nature of the
master’s thesis analysis, as well as, the non-statistical ability of its writer. Further, since the
topic of caregiver burden in the three respective areas of examination and endeavor, that is,
autism, multiple sclerosis, and serious mental illness, could only be largely qualitatively
analyzed from information gleaned via questionnaire, focus group interview, interactional
assessment, structured clinical interview, observation, phone survey, problem focused half-
structured interview, semi-structured interview, and secondary analysis, the results were
inferential and left room for further study. The exception was one article which focused on
biofeedback markers employed quantitative methods to gather data and qualitative methods to
infer relationship. As well, with exception of two longitudinal studies and cross sectional
analysis derived from a longitudinal study, most of the work was performed within a cross
sectional framework, in essence, a snapshot of human behavior from a single point in time.
Then, within the conceptual framework of the study, (i.e., the purpose of the study, theoretical
foundation, research questions, and hypothesis) a number of devices were employed for sample
recruitment and information gathering.
Methodology
Autism
In the case of autism, where a frank gathering of caregiver experiences was obtained
from interview, survey, or questionnaire, as opposed to a secondary analysis of a previous study

53. CAREGIVER BURDEN 51
or other such review, participants were most often assembled from meetings or workshops for
parents of children with autism spectrum disorder (ASD), colleges or universities, solicitation by
mail to local schools and programs for children with ASD, autism e-mail lists, Facebook,
national autism websites, daycare centers, or by phone survey. Modes of evaluation of
subjective experiences of caregivers included the Family Resilience Assessment Scale (FRAS),
the Caregiver Strain Questionnaire (CGSQ), the Sensory Experiences Questionnaire (SEQ), the
Dyadic Coping Inventory (DCI), the Parenting Stress Index- Short Form (PSI-SF), the State-
Trait Anxiety Inventory (STAI), the Spanish revised version of the Somatic Symptoms Scale
(ESS), and the Dutch Family Environmental Scale. The ASD affected child was evaluated
using the Mullen Scales of Early Learning Visual Reception Scale (MSEL-VR), the Autism
Diagnostic Observation Scale (ADOS), the Autism Diagnostic Interview Revised (ADI-R), the
Autism Spectrum Quotient (AQ), and, Robinson’s Caregiver Strain Index, the Sibling Inventory
of Behavior, the Hassles and Uplifts Scales (HUS), the Revised Experiences in Close
Relationships Questionnaire (RECRQ), and the Stanford-Binet Intelligence Scales (Cho &
Kahng, 2015; Duca, 2015; Kirby, White, & Branek, 2015; Ruiz-robledillo & Moya-albiol, 2015;
Saunder, Tilford, Fussell, Schulz, & Casey, 2015; Van Hees, Moyson, & Roeyers, 2015; van
Steijn, Oerlemans, van Aken, Buitelaar, Rommelse, 2015; Roper, Allred, Mandleco, Freeborn, &
Dyches, 2014).
Multiple Sclerosis
The information that was utilized for these studies was gathered from assessments of
subjective experience offered by both caregivers and patients. Among the evaluations performed
on caregivers were the Medical Outcome Short Form-12, the Interpersonal Support List-Short
Form, the Patient Health Questionnaire, the Rosenberg Self-Esteem Scale, the Satisfaction with