Review of Related Literature and Study

The lived experience of stroke patient caregivers is a phenomenon, and in order

to fully understand this phenomenon, a phenomenological inquiry is to be done; just as
a horse needs to have his blinders taken off to see both sides of the road, the
researchers undertake this study to see all sides of the reality and insights of the lived
experience of stroke patients caregivers. Below is the summary of the current
information available regarding the problem under study.

Review of Related Literature

STROKE
A stroke is sometimes called a brain attack, occurs when blood flow to the brain
is interrupted that can happen to blood vessels breaks or gets blocked by a clot. When
someone has a stroke, brain cells in the immediate area begin to die because they stop
getting the oxygen and the nutrients they need. There are two main types of stroke;
hemorrhagic and ischemic. Hemorrhagic stroke accounts for only about 20 % of all
strokes. In hemorrhagic stroke, a blood vessel in the brain ruptures and bleeding occurs
in the brain. As a result, intracranial pressure may increase disrupting the normal
cerebral function.
Hemorrhagic strokes are further classified by location as intracerebral or
subarachnoid hemorrhage. Intracerebral (in the cerebrum) hemorrhage is frequently
associated with uncontrolled hypertension. High pressure within the vessel simple

breaks down the vessel structures. A subarachnoid hemorrhage occurs between the
arachnoid and pia mater layers of the brain covering. The pia mater is the thin
membrane covering the brain. The arachnoid covers the pia mater. Subarachnoid
hemorrhage may be due o congenital malformation of blood vessels i the brain or to
rupture of an aneurysm.
Ischemic strokes including embolic and thrombotic strokes are more common
type affecting the brain to 80% of stroke patients. An ischemic stroke is caused by an
artery in the brain that narrows or becomes completely blocked preventing normal blood
flow.

The effects of cell death depend on the functions of the affected cells. The

vascular obstruction is created by atherosclerotic plaques or blood clots. In an embolic

stroke it is formed elsewhere in the body and travels to the brain, the embolus lodges in
the narrowed artery and obstructs blood flow.
Cardiac disease is also a factor in the development of clots that become emboli.
Patients with mitral stenosis, atrial fibrillation, or myocardial infarctions may develop
emboli as complications of their cardiac conditions. A thrombotic stroke develops when
a thrombus which forms in an unhealthy artery of the brain or in a particular area in a
blood vessel of the brain. The lack of blood flow causes the tissue arteries supply to
become starved or ischemic. Patients who have thrombotic strokes may have a history
of transient ischemic attacks (TIA). They may also experience stroke in evolution, or
progressive stroke. In a progressive stroke, symptoms worsen over approximately 48
hours, indicating that further neurologic impairment is occurring.

Concerns of stroke patients

The lives of these individuals had completely changed. The automatic response
of functioning was lost and they were constantly redefining themselves. Their continued
existence required relearning, pre-planning, and seeking assistance from others. A
severe stroke attack influences a stroke survivor's health, quality of life and well-being
(Anderson,2007). Bodily alterations following stroke threaten identity and seem to have
devastating consequences on stroke survivor's social involvement and their sense of
being accepted. Approximately one third of stroke survivors experienced aphasia. For
these stroke survivor's communication becomes extremely difficult.
Multiple loses of cognitive and physical ability combined with changes in
personality lead to feelings of a profound loss of self and to social retraction (Murray,
Craig, Harrison). This retraction is caused by the negative feedback of the society which
alter the personal well-being of a stroke patient. The meaning of the disabled body is
socially defined as it becomes the focus of the "social gaze" (Ellis-Hill, Payne & Ward
2000). Disrupted embodiment and loss of self confidence have a negative influence on
gendered identity and complicate the establishment and maintenance of gendered
relationships. In a study by Stone, younger female stroke survivors experienced being
unable to meet other expectations of the people (Murray & Harrison 2004). Feeling that
their invisible disabilities are neglected by others that lead to withdrawal from social
settings, which covers up their disabilities even more.

Stroke patients are also concern and are struggling to maintain their positions in
the family as their family's perception of them as altered differs from their own
perception of self (Wyler & Kirkevold 1999). This difference interferes with stroke
survivors' role functioning and interactions within the family. The influence of social
support and existing resources is very important for how well stroke survivors adapt to
changes. Positive processes of meaning transformation after stroke hold the potential to
strengthen family relationships and to allow the stroke survivor to feel competent and
valued.

Struggling to maintain social relationships

Multiple losses of cognitive and physical ability combined with changes in
personality lead to feelings of a profound loss of self and to social retraction (Murray &
Harrison). This retraction is also caused by the negative feedback of others. The
meaning of the disabled body is socially defined as it becomes the focus of the 'social
gaze' (Ellis-Hill p.730). Disrupted embodiment and loss of self-confidence have a
negative influence on gendered identity and complicate the establishment and
maintenance of gendered relationships.

Increasing Stroke Awareness

Stroke places a significant burden to all affected individuals, but it is perhaps
more significant amongst members of black, minority and ethnic communities, who may

experience poorer awareness of stroke symptoms than the general population.

Recently, several initiatives tried to improve public awareness that symptoms of stroke
need to be treated as a medical emergency. However, ethnic communities present
cultural barriers, requiring tailored health promotion interventions, whose effectiveness
remains uncertain.
Stroke is the second highest cost of death in the world. In 2004, stroke had a
worldwide prevalence of 30.7 million cases, with 9 million new cases every year. A
significant proportion of patients die from stroke, and survivors often experience
disability or impairment according to United States' data. Consequently, health system
costs resulting from stroke-related deaths and disabilities are high. This significant
financial burden is likely to increase in the future since the majority of strokes affect the
elderly. Studies from the U.S and the U.K suggested that ethnic minorities experience
higher stroke risk and incidence and worse outcomes in comparison to the general
population, due to hereditary, environmental, social and health-system factors.
Moreover, ethnic minorities experience increase risk of pre-hospital delays, and show
lower stroke awareness than the general population.

Current evidence based management of stroke involves rtPA thrombolysis within

three hours from onset. It is thus imperative that symptoms are recognized early to
allow prompt admission to the nearest stroke unit. Nonetheless, very few eligible
patients received the recommended treatment, mainly because of delayed hospital
admission due to pre-hospital delays, i.e. delays occurring from the onset of symptoms

to admission. Two studies suggest that belonging to a BME community increases the
risk of significant pre-hospital delays.
It is therefore critical to understand which health promotion interventions
have been carried out to increase awareness of stroke symptoms and adequate
response in BME communities, and whether there is evidence to demonstrate their
effectiveness.

High risk for stroke

Stroke survivors and

caregivers raised

many concerns regarding

the

management of health conditions that they now know to be risk factors for stroke. There
are various modifiable and non-modifiable risk factors for stroke. Modifiable risk factors
for stroke include: hypertension, diabetes, smoking, heart disease, high cholesterol,
physical inactivity, and alcohol use (Goldstein et al. p. 380). Some of the non-modifiable
risk factors for stroke include: age, sex, race, and family history (Goldstein et al. p. 381).
Studies that have assessed the general publics knowledge of stroke risk factors
have shown that this knowledge is low. Rates of 68-80% of the general public studied
were able to list at least one stroke risk factor (Pancioli et al. p.1288). However, less
people know the multiple risk factors for stroke. Pancioli et al. found that approximately
4% of respondents were able to list 3 stroke risk factors. On the other hand, Reeves et
al. found that 14% of the population studied were able to identify at least 3 stroke risk
factors. The most commonly reported stroke risk factor in these studies is hypertension,

which is considered the most critical risk factor for stroke (Goldstein et al. p.382).
Unfortunately, those at highest risk of stroke, including the very elderly, were less
knowledgeable about the risk factors for stroke. Willoughby et al (p.419) found that a
community-based stroke prevention and screening program was found to increase
knowledge about stroke, what stroke is, personal risk factors and ways to reduce their
risk.

Rehabilitation
The rehabilitation phase, especially during preparation for discharge seemed to
be the time when stroke survivors and caregivers had more questions. Caregivers were
also interested in knowing or would have benefited from information on:

How to care for someone with stroke

Stroke survivor personality changes
Necessary home renovations
Sex and intimacy after stroke
Similarly, Hanger et al (p. 46), found that at 6 months and 2 years post-stroke,

stroke survivors and caretakers still wanted to know general stroke information such as
stroke prevention and recurrence. They also asked more specific questions around the
role of medications and lifestyle risk factors for stroke, as well as financial and
employment issues at 6 months post-stroke. As time passed post-stroke there was an
increase in the number of questions asked around the psychological effects of stroke.
Although this study indicates that there may be a trend in the types of information
needed by stroke survivors and caregivers as time passes post-stroke, each individual

has different education and information needs. Rodgers et al (p. 130) suggest that
education and information needs are different for each stroke survivor and caregiver
throughout the stroke experience and rehabilitation continuum. Individualized
information and education, with continued reassessment and revision of information
would be beneficial.

Caregivers

According to Mosby's Dictionary of Medicine, Nursing and Health Profession

(2006), "A caregiver is the one who supplies the medical, social, and economic or one
who contributes the benefits of medical, social, economic, or environmental resources
to a dependent or partially dependent individual, such as critically ill person."
Caregivers take care of person with physical limitations and who will require
much more attention than they did before the illness. Especially with patients having
cognitive and communication limitation such as stroke patients, care giving becomes
much more difficult and challenging. These are issues that are not easy and simple to
address as absolute physical limitations. Emotions of the caregiver such as love, pity,
mercy, boredom, loneliness, anger, fear, anxiety, and others, make the care giving role
more complicated. The gap that this study wants to feel in it is the treatment of the lived
experiences of caregivers which have not been addressed phenomenological queries. If
addressed, lived experiences are done in what positivism describes as numeric

quantification of appearances in the sense of physical sciences. This study then is a

phenomenological determination of what Husserl calls the truth of the stroke caregivers
lived experience.

Concerns of caregivers

Many stroke survivors and caregivers reported that they wanted to know more
information about stroke and how to prevent recurrence of stroke. Some individuals
reported taking action to reduce their risk of stroke recurrence (i.e. lifestyle changes,
compliance with medications, etc) while others felt that they were not adequately
informed about secondary prevention of stroke. Mouradian, Majumdar, Senthilselvan,
Khan and Shuib (p.1656) found marked room for improvement of risk factor
management of hypertension, smoking, diabetes, and hyperlipidemia, for secondary
prevention of stroke in stroke prevention clinics. It should be noted that this study did
not look at the practice of family physicians.
Related to the issue of primary and secondary prevention, many individuals do
not have a family physician. This increases the challenge of risk factor screening for
stroke for numerous individuals. In addition, there is a perception among YSP stroke
survivors and caregivers that doctors either lack the time or do not take the time to
answer their questions or provide risk factor management education. From the
interviews it is evident that this has lead some stroke survivors at high risk for stroke to

make potentially harmful decisions such as not scheduling doctors appointments unless
absolutely necessary. For example, one stroke survivor self-adjusts her blood pressure
medication instead of seeking physician assessment.

Review of Related Studies

Stroke as critical life event in the Filipino Family

A descriptive and exploratory study of Somera of De La Salle University Manila

Philippines about Stroke as a critical life event in the Filipino Family which describe the
social and cultural dimensions of stroke as a critical life event among a selected group
of older persons and their family caregivers and to gain insights into the patterns of
caregiving for older person stroke survivors within Filipino families.(Somera, 2010)
The sample population consisted of 100 stroke survivor-caregiver dyads and the
stroke survivors were aged 50 years old and above and had at least one stroke incident
in the past year. The survey interview was done in two phases: First visit - done four
weeks after discharge from the hospital and second visit - occurred three months after
the initial visit. Three interview guides were utilized for the in-depth interviews: one for
the stroke survivor, one for the caregiver, and one home and environment guide. Indepth analysis of the stroke experience was later on extracted to obtain the important
lessons that can be learned from the stroke experience, in terms of coping and
caregiving attendant to the illness.

Base of the diagram of the study these were the summary results: The
respondents have low socio -economic status and are at risk for various illnesses as
well as for social isolation as a consequence of illness. There were more male stroke
survivor respondents which may be attributed to their lifestyles. Majority of the SS have
low educational attainment which has profound implications on their awareness about
stroke and factors which may predispose them to the illness, majority of the SS
experienced stroke for the first time. Most of the SS were parents who have to perform
their parental roles even if they are still on the period of recovery. Majority of the stroke
survivors are dependent on their families for financial support. Most of the SS perceived
their situation to be worse for both the first and the second visits. Medical care was not
well provided to the stroke survivors, as perceived by the stroke survivors, themselves.
Support is more apparent during the first visit after the stroke occurred. Support from
the family significantly increased during the second visit; support from other people
considerably declined. Increase in the number of stroke survivors who are able to
perform instrumental activities of daily living was significant and implied an improvement
in the over-all health status of the SS. The majority of the SS expected additional
support on both visits; the need for psychosocial and economic support is more
apparent during the first visit.
The caregivers in the study were mostly females; mostly immediate family
members and were mostly the eldest children. The CGs were more highly educated
than the SSs; their level of awareness about stroke, however, did not differ much from
that of the SSs. The decline in the SSs health was what the CGs found as the most
distressing by the second visit. Financial constraints associated with caregiving was

what the CGs found as the most distressing aspect of caregiving during the first visit.
The cost of health care which is more than what the CGs could afford is the most
commonly encountered burden for both visits. The nature of health services available in
the community is virtually unknown to almost all of the respondents. There was an
increase in the number of CGs who are able to cope well by the second visit, as
revealed by the coping index.
Community health services are not availed of by the majority of the respondents.
Information about the existence of community services and the involvement of family
CGs in community efforts is virtually non-existent. Reasons cited for not availing
community health services are inadequacy of services particularly those that would
address the SSs rehabilitation needs, lack of equipment and trained personnel.

A descriptive study on Diabetes Mellitus from Stroke Patients aging from 40 to

90, in Holy Child Hospital and Silliman Medical Center in Dumaguete City for the year
1994. The research was conducted in the two hospitals which are found in Dumaguete
City. (Atluba, 1994)
According to the researchers, male patient, aging 71-75 has the highest
incidence of stroke with 5 cases compared with only 2 cases under age bracket 45-80.
Nineteen had thrombotic stroke with its highest incidence at the age bracket of 45-66.
Embolic and hemorrhagic stroke has equal occurence with 4 each. Embolic stroke had
its highest incidence at the age bracket of 71-75 while hemorrhagic stroke at 76-80.

However, lacunar stroke had no occurrence on the 27 patients the group gathered as
data.
The researchers concluded that age can also be a contributing risk factor of
stroke. Also diabetes mellitus accompanied with hypertension and other risk factor such
as age, sex, history of smoking and alcohol intake, obesity and high cholesterol level,
will greatly increase the incidence of stroke on admitted patients of 40 to 90 years old in
Dumaguete City within the years 1994 as evidently shown by the 17 out of the 27 stroke
patients.
Another research study by Aranas et al. was conducted during 1990-1994. The
title of their research was Exploratory Study of all Stroke Patients admitted at Negros
Oriental Provincial Hospital in Dumaguete City from 1990-1994. The place where they
did the research was in Negros Oriental Provincial Hospital, Dumaguete City.
They stated that the occurrence of stroke was due to several risk factors that
have been known to exist in Dumaguete City. With the data gathered by the
researchers, they observed that stroke was most likely to occur to patients belonging to
the age bracket 61-70 years old. The age bracket less likely to suffer from stroke is 2030 years old.
The researchers observed that the most common risk factor affecting stroke
patients admitted at NOPH from 1990 to 1994 is hypertension. This is followed by
minimal risk factors, then diabetes mellitus, and lastly, cardiac disease.
In addition, they also found out that the most common type of stroke affecting
patients admitted at NOPH from 1990 to 1994 is thrombosis. this is followed by

haemorrhage. Embolism and lacunar, on the other hand, rarely occurred. They have
also observed that the incidence of stroke patients admitted at NOPH vary from 1990 to
1994. The greatest incidence was on the year 1990. The last incidence was on the year
1991. From 1991 to 1994, the incidence of stroke patients admitted increased.
In 1990, there are 105 stroke patients admitted. In 1991, there were only 6 cases
of stroke.
There were four motor problems experienced by stroke patients, namely: left
hemiplegia, right hemiplegia, left hemiparesis and right hemiparesis. The researchers
found out that left hemiparesis was the most common motor problem experienced with
16 out of the 199 reported cases.
A group of researchers namely, Marler et.al. from the National Institute of
Neurological Disorders and Stroke, Rockville, MD 20892, USA also had undergone
research about stroke. The title of the study was Early stroke treatment associated with
better outcome: the NINDS rt-PA stroke study. This was published by the year 2000
and was published in the United States of America.
The National Institute of Neurological Disorders and Stroke (NINDS) rt-PA Stroke
Study showed a similar percentage of intracranial hemorrhage and good outcome in
patients 3 months after stroke treatment given 0 to 90 minutes and 91 to 180 minutes
after stroke onset. At 24 hours after stroke onset more patients treated 0 to 90
compared to 91 to 180 minutes after stroke onset had improved by four or more points
on the NIH Stroke Scale (NIHSS). The authors performed further analyses to

characterize the relationship of onset-to-treatment time (OTT) to outcome at 3 months,

early improvement at 24 hours, and intracranial hemorrhage within 36 hours.

The analysis suggests that patients treated 0 to 90 minutes from stroke onset
with rt-PA have an increased odds of improvement at 24 hours and favourable 3-month
outcome compared to patients treated later than 90 minutes. No effect of OTT on
intracranial hemorrhage was detected within the group treated with rt-PA, possibly due
to low power.

In addition, Lyen et.al. were from the Department of Neurosciences, University of

California at San Diego School of Medicine, USA. The title of the study was A modified
National Institutes of Health Stroke Scale for use in stroke clinical trials: preliminary
reliability and validity. This was published by National Center for Biotechnology
Information, U.S. National Library of Medicine.
The researcher used formal clinimetric analyses to derive a modified version, the
mNIHSS. They then sought to demonstrate the validity and reliability of the new
mNIHSS.ThemNIHSS was derived from their prior clinimetric studies of the NIHSS by
deleting poorly reproducible or redundant items which includes level of consciousness,
face weakness, ataxia, dysarthria and collapsing the sensory item into 2 responses.

Another study by Gurcay et al. from National Center for Biotechnology

Information, U.S. National Library of Medicine 8600. The title of the study is Health-

related quality of life in first-ever stroke patients. This was published by the year 2009
in United States of America.
The researcher aimed at assessing HRQOL in patients 3 months after stroke and
to identify factors that predict HRQOL in stroke survivors. This was a cross-sectional
study of all eligible patients admitted to the Ministry of Health Education and Research
Hospital Physical Therapy and Rehabilitation Clinic between January 2007 and March
2008. Sixty-seven patients surviving 3 months after stroke participated in the study.
Criteria for inclusion in the study were first-ever stroke (cerebral infarction or
hemorrhage), confirmed by either brain CT or MRI findings consistent with the clinical
presentation, patient willingness to participate, and the availability of a complete MiniMental State Examination (MMSE), Functional Independence Measure (FIM), and SIS16 data. Exclusion criteria were stroke due to other intracranial diseases such as
subarachnoid hemorrhage, sinus venous thrombosis and severe head trauma, absence
of neuroimaging data, co-morbidities that would limit life expectancy, and severe
cognitive impairment.
In this study, the researchers found that age and functional status had a powerful
influence on HRQOL. Comprehensive therapy programs aimed to improve HRQOL
should focus on improving functional disability, particularly in older stroke patients.
There is a need for long-term follow-up studies in stroke patients throughout all recovery
stages to evaluate HRQOL in more detail.
Paolo Gardois, Andrew Booth, Elizabeth Goyder and Tony Ryan from the BMC
Public Health Ltd. The title of the study was Health promotion interventions for

increasing stroke awareness in ethnic minorities: systematic review of the literature.

This was published on April 28, 2014 in United States of America.
The result of the study showed that evidence of effectiveness from 11 case
reports and four RCTs focused on short- to medium-term knowledge improvement for
individuals seems particularly weak and inconclusive. Therefore, they suggest that
further research is conducted on different countries and ethnic minorities.

Another study of Haley et.al entitled Problems and Benefits Reported by Stroke
Family Caregivers: Results from a Perspective Epidemiological Study that was
published on 2009 stated that the most common and stressful stroke-related patient
problems reported by family caregivers. Understanding stroke-related patient problems
reported by caregivers is important because they are risk factors for caregiver
depression, which also is a known risk factor for a negative impact on the stroke
survivor, and because they increase risk of nursing home placement. Caregivers rated
mood disturbances of the stroke survivors, including sadness and anxiety, among the
most stressful problems they faced. Many survivors have depression and anxiety a year
post-stroke, even after participating in usual post-discharge programs. Anxiety
symptoms are present in both acute and non-acute stages (i.e. 3 years.) of stroke and
are often associated with fear of stroke recurrence. Interventions to help caregivers
manage depression and anxiety in persons with stroke should be a high priority.
Research suggests that care management of post-stroke depression is a promising
intervention deserving further attention. Memory related patient problems, including

asking repeated questions, and trouble remembering recent events, were also rated as
highly stressful. Caregivers can learn strategies to cope with such impairments,
including distraction and avoiding arguing with the patient.
Another positive finding from the epidemiological sample of first-time stroke
survivors and their family caregivers was that many caregivers reported benefits from
care giving, such as feeling a greater appreciation for life. Perceived benefits from care
giving may be an important psychological resource for caregivers. The ability to find
benefits in stressful circumstances such as care giving is increasingly seen not as a
form of denial, but as a beneficial form of coping.
In conclusion, clinicians should make it a high priority to assess and intervene
with caregivers on these highly stressful problems but also to identify perceived benefits
of care giving. Application of this framework has the potential to benefit future
intervention efforts by identifying gaps in caregiver education, training, and support.

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Manila Philippines. 2010