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Background of the Study
In the Kidney International (2010) chronic illness has been described
as a journey made by an unwilling traveller. For those living with chronic
kidney disease, it's a journey of strong emotions, uncertainty, shifting roles,
changing relationships, compromise, complex choices, and often a more
profound awareness of self to a trip one cant take alone. When chronic
kidney disease progresses toward kidney failure, it will impact not just the
patients but the day-to-day lives of family and loved ones. No one comes to
the experience of dealing with chronic illness prepared for what lies ahead.
Caregivers often find themselves scrambling to cope with a long litany of
tasks dealing with doctors, finding appropriate and affordable resources,
and simply attending to normal, everyday tasks. They have to absorb in-depth
information about their loved one's disease so they can help evaluate different
treatment alternatives, make sure doctor's orders are followed, and recognize
complications if they occur. They often need to learn actual healthcare skills
like keeping wounds clean, giving medications, and monitoring blood
pressure and blood sugar levels. It's common for them to feel constant
conflict between job responsibilities and giving care, while some are forced to
take a leave from work or retire early, adding to their stress with increased
financial concerns.
As a health care practitioner and the unit manager of the male medical-
surgical ward for several years, the researcher came across numerous clients
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suffering with end-stage renal disease and witnessed how frustrating it is not
just for the patients but for the family members as well to be diagnosed with
such disease and then recommended hemodialysis in order to live longer.
Family members feel the same shock, fear, anger, sadness and loss as the
person who is ill. They are witnesses to their loved ones' physical and
emotional deterioration.
Being the health care teams partners in providing quality health care
to patients, the researcher finds it vital to have a better understanding of the
lived experiences of spousal caregivers towards their altruistic journey with
their beloved whom they once pledged to have and to hold, for better for
worse, for richer for poorer, in sickness and in health to love and to cherish till
death do they part.
Research Locale
The study about the lived experiences of the spousal caregivers of
end-stage renal disease patients undergoing hemodialysis was conducted in
a selected union-owned tertiary hospital located in Intramuros, Manila. In the
1980s the institution was exclusively established to address health needs of
the members of a labour union of seafarers.
The 100-bed capacity hospital houses a hemodialysis unit with five
machines operational on a twenty- four hour basis. The institution provides all
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the services, medical supplies and medications free of charge to the
bonafied union members and their dependents who are actively contributing
their membership dues while on board their respective company vessels and
for the institutions employees and their qualified dependents as one of the
employment benefits.
Research Objectives
This study was undertaken to better understand the experiences of
spousal caregivers of patients with end stage renal disease undergoing
hemodialysis in a union-owned tertiary hospital in Intramuros, Manila. This
phenomenological study was guided by the research question: What are the
lived experiences of spousal caregivers of end-stage renal disease patients
undergoing hemodialysis?
Significance of the Study
The study attempted to explore the lived experiences of spousal
caregivers of end-stage renal disease patients undergoing hemodialysis as
they journey with lifes challenges. The result may serve as a body of
knowledge that may be used as a framework in developing ways to help
people be most effective in their lifes role. Findings of the study aim to benefit
the following:
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Hospital Administration Awareness of the spousal caregivers role
as partners in the realization of the hospitals mission of providing quality
health care to the patients.
Nursing Service Department Recognition that spousal caregivers
are extension of nursing responsibility in the delivery of holistic health care
inside and out of the hospital.
Spousal Caregivers Understanding that their attitude towards
caregiving affects their patientsview of the illness and treatment compliance.
End Stage Renal Disease Patients Undergoing Hemodialysis
Encouragement to carry on with their life as they become aware of the care,
support, sacrifices and hardships of their beloved spousal caregivers.
Future Researchers Implication to conduct more studies on the lived
experiences of spousal caregivers of patients who are suffering from end-
stage renal disease or any other chronic diseases that need long-term
treatments.
Scope and Limitation of the Study
The study focused on the lived experiences of the spousal caregivers
of end-stage renal disease patients undergoing three times per week
hemodialysis treatment in a selected union-owned tertiary hospital in
Intramuros, Manila. The informants were selected from among the list of
patients currently registered in the hospitals hemodialysis unit. This includes
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eight informants - six females and two males who have became their
spouses primary caregivers for at least one year, and with the physical and
mental capacity to participate. The study was conducted from May to July
2013.
Definition of Terms
The following terms are operationally defined to facilitate a better
understanding of the study:
Hemodialysis is a medical treatment wherein a machine is used to
remove excess fluid, regulate electrolyte balance and filter blood toxins out of
the body of an end stage renal disease patient in order to stabilize the
condition. It is done three times a week for three to four hours per session for
the rest of patients life.
Lived Experiencesare the actual lifes events undertaken by spouses
of end stage renal disease patients undergoing hemodialysis as they embark
in the challenging role of caregiving their ailing spouse.
Spousal Caregiver refers to either husband or wife who for one year
or more acts as the primary responsible person to look after and attend to the
needs of their spouse undergoing hemodialysis due to end stage renal
disease.
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CHAPTER 2
REVIEW OF RELATED LITERATURE AND STUDIES
This chapter presents a review of literature and related studies that
bear significant relevance to the present study.
Chronic Kidney Disease
The National Kidney and Transplant Institute (2010) conducted a study
regarding the incidence of kidney disease in the country and found out that
each year an estimated 120 Filipinos per million populations (PMP) develop
kidney failure. This means that about 10,000 Filipinos need to replace their
kidney function each year. Sadly, in 2007 only 7,267 patients started dialysis
or received a kidney transplant directly. Only 73% received treatment
because they were able to get to a hospital providing dialysis or could afford
the therapy. The acceptance rate of treatment for kidney failure in the
Philippines is only 86 PMP, compared to 100 PMP in South Korea, and 300
PMP in the United States (accessed from the International Federation of
Renal Registries in 2000 Web site). A quarter of Filipino patients probably just
died without receiving any treatment last year. The leading cause of kidney
failure in the Philippines is diabetes (41%), according to the Philippine Renal
Disease Registry Annual Report in 2008, followed by an inflammation of the
kidneys (24%) and high blood pressure (22%). Patients were predominantly
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male (57%) with a mean age of 53 years. Thus, diabetic males in the most
productive years of their lives comprise the population who received
treatment for kidney failure in 2007. They require replacement of their kidney
function to live. Without dialysis or kidney transplantation, patients with kidney
failure die.
Options for treating kidney failure
Patients developing kidney failure can choose between dialysis and
kidney transplantation as treatment for their illness. Dialysis comes in the
form of hemodialysis where the patients blood is made to run through a
series of tubes which removes poisons and excess fluid that have
accumulated in the blood, and is then returned to the patient. A hemodialysis
session lasts for four hours and needs to be done three times a week to
adequately replace sufficient kidney function for the patient to live. The patient
needs to travel to a dialysis unit each time for treatment.
Another option is peritoneal dialysis, where a permanent tube is placed
in the patients abdomen, and the patients own membrane acts as the
artificial kidney. Special fluid enters the abdominal cavity and stays there for
several hours, and the poisons and excess fluid transfer from the blood to the
fluid, which is drained out of the body. This process is done daily, three to four
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times a day. Patients are trained to perform this type of therapy by
themselves at home.
The best way to replace kidney function though is to transplant another
kidney into the patient through a surgical procedure. Only another kidney can
completely replace kidneys shrunken because of disease. Dialysis only
provides about 15% of kidney function. It is enough to sustain life, but needs
to be performed regularly, and for life. (National Kidney and Transplant
Institute, Philippines, 2010)
Cost of Treatment
Adequate dialysis costs from Php 25,000.00 to 46,000.00 per month or
Php300, 000.00 to 552,000.00 annually. If one is able to afford this lifelong
treatment then the patient will be well enough to return to his normal way of
life, and just apportion time for dialysis treatment. However majority of
Filipinos cannot afford this costly treatment for more than a year. A study at
the National Kidney and Transplant Institute, a tertiary government hospital
providing services for kidney disease, showed that half the patients who start
dialysis are dead within a year, presumably because they could not afford
sufficient dialysis. Most Filipinos pay for their treatments without any subsidy
from insurance. PhilHealth covers about 51% of the annual cost of treatment,
if the maximum benefit is claimed. The patient therefore has to pay for half of
the treatment or at least Php150, 000.00 per year. According to National
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Kidney and Transplant Institute, only 15% of the partially-subsidized patients
are PhilHealth members. Thus they have to pay for most of the treatment,
and are reliant on government assistance to afford any treatment.
This results to patients who can afford only partial therapy, which may
be sufficient to exist, but not enough to live. Patients without sufficient dialysis
are weak and display many of the symptoms that led to their diagnosis. They
are malnourished and unable to work, existing only until the next dialysis
treatment, whenever that may be. In a survey conducted by five kidney
specialists on patients with chronic kidney disease from Bacolod City, Negros
Occidental, from May to July 2002, only 46% of 182 patients prescribed
dialysis were able to start treatment. Among those who started dialysis, 96%
had inadequate treatment because they could not afford it.
Problems Encountered in Spousal Caregiving
Spouses who take on the responsibility of caregiving experience major
disruptions in their daily living patterns (Thommessen, Aarsland, Braekhus,
Oksengaard, Engendal and Laake, 2007). Caregiving can affect the social
lives of the people providing care, although the extent to which the caregiver's
social life is disrupted is highly variable. Social isolation is another problem
encountered by spousal caregiversof stroke survivors (Dorsey & Vaca, 2009;
Williams, 2008). It is not uncommon for spousal caregiversto feel distressed
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because of decreased social contacts (King, Carlson, Shade-Zeldow, Bares
and Heinemann, 2008). Changes in their social lives may be a result
ofspousal caregiversbeing forced to take on a variety of new roles andresponsibilities (Dorsey & Vaca, 2008). A change in their role is one of the
first consequences forspousal caregiversof those with debilitating illnessessuch as stroke.
Changes in sexual function are frequently a consequence of chronic
diseases (Sjogren, 2010), and sexual dysfunction often negatively affects the
caregiving spouse (Korpelainen, Nieminen, & Myllyla, 2009). In one study,
spouses reported several negative consequences regarding sexual health
after their partner had experienced chronic disease, including declines in
sexual interest, desire for their partner, and participation in sexual activity, as
well as decreased sexual satisfaction. Attitudes toward sexuality, fear of poor
performance or impairment, and poor communication around sexuality were
the primary factors that contributed to these sexual problems.
Problem Behaviours of Care Recipients
Care recipients' problematic behaviours have been studied extensively
and are consistently found to be influential predictors of caregivers distress
(Pinquart & Sorensen, 2010; Schulz, O'Brien, Bookwala, & Fleissner, 2009).
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Such problems (e.g., falling down, making excessive demands, or asking
repetitive questions) are typically associated with either physical illness or
cognitive impairment (Bookwala & Schulz, 2010). Early research on the
incidence of problem behaviours among care-recipient spouses indicated that
husband caregivers reported more problematic behaviours among their
spouses than did wife caregivers (Barusch & Spaid, 2009). However, a more
recent study (Bookwala &C Schulz, 2010) discovered a different pattern of
results. These researchers found that, in contrast to husband caregivers, wife
caregivers reported a higher incidence of problem behaviours among their
care-receiving spouses.
In addition to gender differences in the incidence of problem
behaviours, the effect of such behaviours may also vary by caregivers
gender. For example, Bookwala and Schulz (2010) reported that, although a
multi-group analysis found no significant gender differences in the size of the
path coefficients linking problem behaviours and depression, models run
separately for husband and wifecaregiversresulted in a different pattern offindings. Specifically, the problem behaviours of care-recipient spouses were
not significantly related to depression for caregiving husbands but were
related to depression for caregiving wives. In addition, in a study that focused
on only femalecaregivers, husbands' problem behaviours were significant
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predictors of their wives' mal-adaptation to caregiving (Seltzer & Li, 2010).
That is, wife caregiverswhose husbands exhibited problem behaviours were
likely to feel distant from their husbands and burdened by caregiving.
Taken together, these recent studies suggest that gender differences
in distress among spousal caregivers may be partially attributable to the
problematic behaviours of care recipients. In comparison with their male
counterparts, caregiving wives contend with more problematic behaviour from
their spouses, and these behaviours have a stronger impact on their
depressive symptoms (Bookwala & Schulz, 2010).
Spousal Caregiversidentified many of the negative reactions tocaregiving reported elsewhere in the literature, such as fatigue or weariness,
depression, anger and sadness, financial stresses, and lack of time (Bowles,
2010; Ross). Care recipients acknowledged the emotional and financial strain
that their spouses were under, expressing concern for their well-being. In
particular, care recipients reported concern over the lack of emotional support
for their spouses or the difficulties that their caregiversencountered whilecaregiving.
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Gender of the Spousal Caregiver
Thoits (2011) argued that it is especially stressors that threaten a
salient and central part of an individual's identity (i.e. identity-relevant
stressors) that cause distress. In other words, when taking care of intimates is
an important part of one's identity, problems in this area or failing in the
caregiving task are expected to cause considerable distress. Owing to
differences in role identities, stressors that have a strong effect on women
may have a weaker effect on men, and vice versa. Indeed, previous studies
have demonstrated that women are most distressed by stressors that involve
social and family relationships, whereas men feel distressed mostly because
of work and financial events (Bolger, DeLongis, Kessler, & Schilling, 2009;
Conger, Lorenz, Elder, Simons, & Ge, 2008). Similarly, marital experiences,
partners' characteristics, such as supportiveness and mood, and partners'
health condition seem to be more strongly related to women's than to men's
psychological well-being (Cutrona, 2011; Hagedoorn, 2010).
Assuming that taking care of intimate others is more central to
women's than to men's identity, failing in the caregiving task is expected to be
more stressful for women than for men. Thus, caregivers' perceptions about
how well they perform the caregiving task may play an important role in
differences between female and male caregiverswith respect topsychological distress. It is important to note that we do not expect a
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mediation model in which women report lower levels of caregiving
performance and, consequently, perceive higher levels of distress than men
do. Rather, our `identity-- relevant stress' hypothesis reflects a moderator
model in which sex qualifies the association between caregiving performance
and distress. Specifically, based on the importance of caregiving for women's
role identity, we hypothesize that a low caregiving performance is more
strongly associated with psychological distress in female partners of patients
than in male partners of patients. Phrased differently, the difference in
distress between female and male partners of patients may be carried by a
subgroup of partners, namely those partners who feel that they are not doing
a good job at caregiving.
A Familys Burden
In the study of National Kidney and Transplantation Institute (2010),
treating kidney failure is a burden borne not only by the patient, but by the
entire family. A family member or caregiver is needed to care for the patient,
attend to medications and meals, and assist in providing treatment, whether
by performing peritoneal dialysis or accompanying the patient to a
hemodialysis facility. Commonly, a family member has to stop working to care
for the dialysis patient. The patient is too weak to provide self-care and loses
independence. Patients who cannot afford treatment rely on other family
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members to look for the needed funds. Children stop schooling, savings are
used up, objects of value are sold, and all the earnings of those who work are
used to pay for dialysis. This results to families that are impoverished
because of a single patient with kidney failure who needs treatment. The cost
of treatment therefore is not limited to the cost of dialysis. Rather, the cost is
multiplied a hundredfold, and becomes the burden of an entire family.
Burn Out
Cutrona (2011) stated that: Caregivers often are so busy caring for
others that they tend to neglect their own emotional, physical, and spiritual
health. The demands on a caregivers body, mind, and emotions can easily
seem overwhelming, leading to fatigue and hopelessness and, ultimately,
burnout. Spousal caregivers are especially prone to burn out because thesignificant changes in the marital relationship can often leave the spouse who
is giving the care feeling overwhelmed and stressed. This anxiety can be
compounded if the caregiver is also taking over responsibilities that were
once handled solely by their ailing spouse, from cooking and doing laundry, to
balancing the check book and heading up the financial decisions.
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In addition, there is very often a considerable sense of loss when one
is involved in caring for their spouse. This is especially prevalent if ones
spouse suffers from significant cognitive decline or if activities that once
provided pleasure and deepened a sense of connection is no longer possible.
Caregiving spouses often begin to feel very isolated from friends and feel
tremendous guilt about their own unmet needs. Subsequently, they take on
this labor of loveand let their own positive health habits drop off to the side,
putting their health at risk (Jo and Susan, 2010).
TheJournal of American Medical Associationreports that if one is aspousal caregiver between the ages of 66 and 96, and is experiencing
ongoing mental or emotional strain as a result of their caregiving duties, there
is a 63% increased risk of dying over those people in the same age group
who are not caring for a spouse. The combination of loss, prolonged stress,
the physical demands of caregiving and the health vulnerabilities that simply
come with age place an older spousal caregiver in a danger zone.
Coping Mechanism
According to Adreassi, (2010), Coping mechanisms are the sum total
of ways in which people deal with minor to major stress and trauma. Some of
these processes are unconscious ones, others are learned behaviour, and
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still others are skills that individuals consciously master in order to reduce
stress, or other intense emotions like depression. Not all ways of coping are
equally beneficial, and some can actually be very detrimental. The body has
an interior set of coping mechanisms for encountering stress. This includes
the "fight or flight" reaction to high stress or trauma. A person perceiving
stress has an automatic boost in adrenaline, prompting either action or
inaction. People have a variable level of physical reaction to different levels of
stress, and for some, merely getting interrupted from a task can cause an
inappropriate fight or flight reaction. This can translate to fight mechanisms,
where a person gets very angry with others for interrupting him. Alternately,
flight may include physically leaving, or simply being unable to regain focus
and get back on task. Coping mechanisms can also be described as survival
skills. They are strategies that people use in order to deal with stresses, pain,
and natural changes that we experience in life.
Coping mechanisms are learned behavioural patterns used to cope.
We learn from others ways to manage our stresses. There are negative
coping mechanisms and positive coping mechanisms. Many people use their
coping mechanisms to benefit them in a positive way. However, we are not
always able to cope with the difficulties that we face. We experience a range
of emotions throughout our lives, some good, some not so good. Our
behaviours are usually a result of how we handle our emotions. If we are able
handle our emotions positively, our behaviour will likely be positive. If we do
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not handle our emotions in a positive way, our behaviour will likely be
negative (Robinson, 2010).
Denial
Denial is a complex and multidimensional concept that depends
of the instruments used to assess it and demographic variables such
as age, gender, ethnic, cultural background (Vos & de Haes, 2009).
Even if denial could have adaptive properties (such as a normal
response to serious illness) supported by empirical research
(Goldbeck, 2009; Moyer & Levine, 2008), denial of symptoms is an
example of an inappropriate coping response to the detection of
cancer-related symptoms and can be related to less-known symptoms
and heightened perception of threat (Ruiter, de Nooijer, van Breukelen,
Ockhuysen-Vermey and de Vries, 2008).
Depression
According to Cruz (2010), The relationship between depression,
chronic conditions, and quality of life has been studied in many
physical diseases, including populations with ischemic heart disease
and end-stage renal disease . The prevalence of depression in both
groups seems to be higher than in the general population, ranging from
15 to 50% in patients with ischemic heart disease and 6 to 50% in end-
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stage renal disease. Besides these high estimates, depression has
been strongly associated with worse prognosis, health status, and
quality of life. Among patients with coronary artery disease, depression
was described to be as important as cardiac function in the quality of
life and one of the main predictive factors of poor mental and physical
health status. Moreover, depressive symptoms have been related to
lower adherence to treatments. The impact of depression on quality of
life has been demonstrated in patients with end-stage renal disease as
well.
Moussavi, Chatterji, Verdes, Tandon, Patel and Ustun, (2008),
Depression is an important public-health problem, and one of the
leading causes of disease burden worldwide. Depression is often co-
morbid with other chronic diseases and can worsen their associated
health outcomes. Few studies have explored the effect of depression,
alone or as co-morbidity, on overall health status. The World Health
Survey studied adults aged 18 years and older to obtain data for
health, health-related outcomes, and their determinants. Depression
produces the greatest decrement in health compared with the chronic
diseases angina, arthritis, asthma, and diabetes. The co-morbid state
of depression incrementally worsens health compared with depression
alone, with any of the chronic diseases alone, and with any
combination of chronic diseases without depression. These results
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indicate the urgency of addressing depression as a public-health
priority to reduce disease burden and disability, and to improve the
overall health of populations.
Faith
According to Fowler and Dell (2009) faith is characterized as an
integral, focal process, underlying the formation of the beliefs, values,
and meanings that give coherence and direction to persons lives; link
them in shared trusts and loyalties with others ground their personal
stances and communal loyalties in a sense of relatedness to a larger
frame of reference and enable them to face and deal with the
challenges of human life and death, relying on that which has the
quality of ultimacy in their lives.
According to Fowler (2011) faith is our way of discerning and
committing ourselves to centres of value and power that exert ordering
force in our lives. He writes that faith is a dynamic process that comes
out of our experiences as we interact with persons, institutions, and
events. Faith forms a persons way of seeing life in relation to his/her
ultimate environment centre of value and power. Fowler clearly
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distinguishes the meaning of faith from the meanings of belief and
religion.
Influenced by the work of religionist Wilfred Cantwell Smith,
Fowler (2011) notes Smiths distinction between faith and belief; Faith
is deeper, richer, more personal. It is engendered by a religious
tradition...it is a quality of the person not of the system. It is an
orientation of the personality, to oneself, to one s neighbor, to the
universe, a total response...to see, to feel, to act in terms of, a
transcendent dimension. Fowler (2011) describes faith as a verb that is
active and states it is always relational. Belief attempts to express what
faith sees in an ultimate environment. Fowler believes religion is
constituted as faith shapes expression, celebration, and life in relation
to the ultimate environment.
Realization
Realization refers to knowledge of the news as demonstrated in
announcing, hearing about, understanding, accepting, or acting on
some altered feature of the social world in a way that indicates
cognitive apprehension of the feature. In line with theoretical and
empirical challenges to the possibility of differentiating solitary minded
activity from social process, the research here suggests that individual
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cognition is intimately connected to prior inter-subjectivity as achieved
through the embodied praxis of talk and social interaction (Garfinkel,
2009).
Realization by the recipient is not possible when a deliverer
withholds telling what he or she knows about a certain chronic disease,
and this seems to be why recipients express relief, no matter how bad
the news, when they finally are informed. At the same time, forecasting
directly conveys the bad news without being so forthright and abrupt as
to utterly disconcert and disorient the recipient. Similar to stalling,
being blunt can aggravate a state of anomie, but in this case the
possibility of realization is inhibited by the overwhelming rapidity and
boldness of the presentation. Blunt informing appear to maximize the
chances of panic, going to pieces (Glaser and Strauss 2010), and
otherwise being devastated. Accordingly, stalled and blunt informing
exacerbate the senselessness concomitant to lack of typicality,
predictability, causality, and morality that bad news portends in the
perceived environment. Evidence of exacerbated anomic experiences
emerges not only in recipients' misapprehensions, but also in the
emotional experiences they report. Narratives about having chronic
diseases deliveries more regularly contain accounts of recipients'
feelings of hurt, anger, hostility, and indignation than do narratives that
exhibit a forecasted bad news delivery. The misapprehensions that
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obtaining a chronic diseases provoke, then, seem to emanate from
desperate attempts by recipients to resolve anomie, while forecasting,
in the way that it aids realization, simultaneously provides for a more
settled and accurate apprehension of an altered life world.
Realization refers to the acquisition of knowledge through
announcing, hearing about, understanding, accepting, and thus
beginning to enter new social worlds. Realization of the social world in
this sense is not a philosophical notion, as if the fundamental problem
in daily life were to resolve metaphysical questions about the nature of
objects, including bodies and selves, which form the social world.
Acceptance
In the study by Ostapowicz (2010), The concept of the quality of
life is very useful for processes of health enhancement, therapy and
holistic care, and for rehabilitation processes. Researchers dealing
with studies on the quality of life underline that the evaluation should
consider the patients somatic condition, his/ her mental status, social
relations and physical fitness. For heath condition is one of the basic
factors of high quality of life. On the other hand, the level of
acceptance of illness significantly influences adaptation to the
limitations imposed by the disease, dependence on other people and a
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sense of own value. The above-mentioned determinants influence a
subjective sense of the quality of life and deter- mine the level of an
individuals own activity. Each disease causes negative emotions,
difficulties and forces to limit or make changes in social functions that
one holds/ performs. Professional literature underlines the fact that the
higher the level of disease acceptance is, the better the adaptation and
the lower intensity of negative emotions in patients are. Professional
literature does not contain reports on the problem of the quality of life
and the satisfaction with life of malaria patients in the context of
acceptance of the disease. Therefore, conducting studies allowing the
evaluation of the patients quality of life and general condition in
relation to the discussed disease seem purposeful.
The peoples ability to submit to medical procedures and the
therapeutic process depends on the level of acceptance of those
procedures, and on the level of understanding the nature of the
disease. Studies by Oladele and Kaun (2010) and by other authors
demonstrated that the knowledge associated with dealing with chronic
diseases was significantly correlated with the level of education, and
with other important cultural, social and economic factors.
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Love and Marriage
Ash (2008), viewed that the mutual love between man and wife
becomes an image of the eternal love with which God loves
humankind. As stated in the bible in 1 Corinthians 13:4-13,love is
patient and kind; love does not envy or boast; it is not arrogant or rude.
It does not insist on its own way; it is not irritable or resentful; it does
not rejoice at wrongdoing, but rejoices with the truth. Love bears all
things, believes all things, hopes all things, endures all things. Love
never ends. As for prophecies, they will pass away; as for tongues,
they will cease; as for knowledge, it will pass away. For we know in
part and we prophesy in part, but when the perfect comes, the partial
will pass away. When I was a child, I spoke like a child, I thought like a
child, I reasoned like a child. When I became a man, I gave up childish
ways. For now we see in a mirror dimly, but then face to face. Now I
know in part; then I shall know fully, even as I have been fully known.
So now faith, hope, and love abide, these three; but the greatest of
these is love.
Haviland, William A.; Prins, Harald E. L.; McBride, Bunny;
Walrath, Dana (2011) stated that the definition of marriage varies
according to different cultures, but it is principally an institution in which
interpersonal relationships, usually intimate and sexual, are
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acknowledged. When defined broadly, marriage is considered a
cultural universal. In many cultures, marriage is formalized via a
wedding ceremony. In terms of legal recognition, most sovereign
states and other jurisdictions limit marriage to opposite-sex couples or
two persons of opposite gender in the gender binary, and a diminishing
number of these permit polygyny, child marriages, and forced
marriages. In modern times, a growing number of countries and other
jurisdictions have lifted bans on and have established legal recognition
for same-sex marriage, interracial marriage, and interfaith marriage. In
some cultures, marriage is recommended or compulsory before
pursuing any sexual activity. People marry for many reasons,
including: legal, social, libidinal, emotional, financial, spiritual, and
religious. In many parts of the world, marriages are arranged.
Marriages can be performed in a secular civil ceremony or in a
religious setting. The act of marriage usually creates normative or legal
obligations between the individuals involved. Some cultures allow the
dissolution of marriage through divorce or annulment. Polygamous
marriages may also occur in spite of national laws.
Ash (2008) said that marriage can be recognized by a state, an
organization, a religious authority, a tribal group, a local community or
peers. It is often viewed as a contract. Civil marriage is the legal
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concept of marriage as a governmental institution irrespective of
religious affiliation, in accordance with marriage laws of the jurisdiction.
Forced marriages are illegal in some jurisdictions. Historically, in most
cultures, married women had very few rights of their own, being
considered, along with the family's children, the property of the
husband; as such, they could not own or inherit property, or represent
themselves legally. In Europe, the United States, and a few other
places, from the late 19th century throughout the 20th century,
marriage has undergone gradual legal changes, aimed at improving
the rights of women. These changes included giving wives a legal
identity of their own, abolishing the right of husbands to physically
discipline their wives, giving wives property rights, liberalizing divorce
laws, and requiring a wife's consent when sexual relations occur.
These changes have occurred primarily in Western countries.
During the past few decades, major social changes in Western
countries have led to changes in the demographics of marriage, with
the age of first marriage increasing, fewer people marrying, and many
couples choosing to cohabit rather than marry. Catholics, Eastern
Orthodox Christians and many Anglicans consider marriage termed
holy matrimony to be an expression of divine grace, termed a
sacrament or mystery. In Western ritual, the ministers of the sacrament
are the husband and wife themselves, with a bishop, priest, or deacon
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merely witnessing the union in behalf of the church, and adding a
blessing. In Eastern ritual churches, the bishop or priest functions as
the actual minister of the Sacred Mystery. Western Christians
commonly refer to marriage as a vocation, while Eastern Christians
consider it an ordination and a martyrdom, though the theological
emphases indicated by the various names are not excluded by the
teachings of either tradition. The sacrament of marriage is indicative of
the relationship between Christ and the Church (Eph. 5:2932). And so
as written in Mark 10:9 What God has put together let no man put
asunder.
Synthesis
Life-threatening illnesses such as end stage renal disease have a
profound impact on patients as well as their loved ones. For instance, patients
have to deal with painful treatments, physical impairment, and the fear of
dying. Lifelong partners also have to deal with fears, such as losing their
loved one, and in addition, they may have to take an active role in caregiving.
Discussions about chronically ill patients and their families often focus on how
to maintain people in their own homes. Because the primary caregiver of a
terminally ill person is often the spouses, it is important to understand the
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impact of caregiving on their lives (Addington-Hall & McCarthy, 2010; Payne,
2009). Several studies have documented the burden for family members who
are often ill prepared for the level of care required by a chronically ill person
like end- stage renal disease. The resultant burden can have significant
psychological, physical, and financial consequences for familycaregivers( Aranda & Hayman-White, 2009).
Although an essential principle of care is that the patient and his or her
family comprise the unit of care (Ferris, 2008), the majority of studies on this
topic often neglected to examine both perspectives of the caregiving
experience. Lyons (2010), who compared these two viewpoints, found that
caregiveroften reported higher levels of caregiving difficulties and loweramounts of support than care recipients. Relatively little has been written
about care recipients' views about the caregiving experience, as it has been
generally assumed that caregiving has a positive impact on the health of the
care recipient. There are some evidence that the caregiving experience can
have negative mental health implications for the care recipient in situations
where thecaregiver offers too much unnecessary help and not enoughnecessary help (Lehman, 2010; Thompson, 2009).
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Even though there are numerous studies in the literature that highlight
the separate components of the effects of caregiving, not one of them
discusses the multidimensional aspects of caregiving as they affect the lives
of spousal caregiversof chronic disease patients. The study is conducted to
explore the phenomena ofspousal caregiving from the perspective of
thespousal caregivers, and will help readers gain an understanding of theholistic lived experiences of spousal caregivers.
To sum it up, the researcher will acquire an understanding and deeper
perception on the lived experiences of spousal caregivers of hemodialysis
patients. These are supported by some studies of the researchers as outlined
in the review of related literature and studies. A study conducted by Dr.
Richard Schulz in the Journal of American Medical Association (2011)
regarding spousal caregiving he stated that: Spousal caregivers often feel so
much stress since they also live with the person they are caring for, which
doesn't provide for any breaks physically or emotionally. He also mentioned
that it is important that the spouses should continue to do some of the
activities she or he likes so that he or she continues to socialize outside of the
home and give themselves a breather. Likewise, with the study
conceptualized by Richard Anderson (2008), which tackles the difference of
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spousal caregiving from others which both have a strong connection to the
gist of the study.
Theorethical Framework
This research study follows the general systems theory developed by
Ludwig Von Bertalanffy (Ashby, 1956, as cited in McEwen, 2007). The focus
of the theory is on the systems structure rather than the function. It is
consists of three basic components- the Input, Process and the Output. In
connection with the study, the Input is represented by the Transcript of the
Interview made from the eight informants of the study. The Process stand for
the explicitation of data by the use of Collaizzis methodological approach
while the Output is consist of the themes that emerged from the lived
experiences of the spousal caregivers. Through the use of the feedback
mechanism, the output was returned to the informants for validation of result.
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1
Figure 1Research Paradigm
Explicitation
of Data using
Colaizzis
Methodolo-
gical
Approach
Emergent
Themes from
the Lived
Experiences of
Spousal
Caregivers of
Patients
Undergoing
Hemodialysis
Transcript
Files of the
Semi-
structured
Interview of
the Eight
Informants of
the Study
INPUT PROCESS OUTPUT
FEEDBACK
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within the phenomenological philosophy and methodology of qualitative
research (Pollit & Beck, 2008).
Informants of the Study
A purposive sampling was utilized by the researcher in selecting the
prospective informants from among the list of patients currently registered in
hemodialysis unit of a selected union- owned tertiary hospital. The eight
informants composed of six females and two males are spouses who for one
year or more acted as primary caregivers of their husbands or wives
diagnosed with end-stage renal disease and currently undergoing three times
per week hemodialysis.
Demographic Profile of the Informants
Informants of the study include six females and two males aged 56 to
73 years old with the average of 63. All of the informants are married to their
spouses for at least 26 years with adult children except for Informant #6 whos
youngest child is only thirteen years old. Six of the informants spouses avail
of the hospitals free services which includes hemodialysis treatment- as
dependents of their seafarer sons, one as a dependent of a hospital
employee while the other one is a union member himself. Their experiences
as spousal caregivers range from at least two and a half years to seven and a
half years with the average of four and a half years.
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Category Frequency Percentage
A. Age
Range
50-59 2 25%60-69 4 50%
70-79 2 25%
TOTAL 8 100%
B. Gender
Female/Male
F 6 75%
M 2 25%
TOTAL 8 100%
C. Educational
Attainment
Level
Elementary 2 25%
High School 1 12.5%
College 5 62.5%
TOTAL 8 100%
D. Occupation
Job
Retired 3 37.5%
Homemaker 2 25%
Others 3 37.5%
TOTAL 8 100%
E. Number of Children
Range
1-2 3 37.5%
3-4 4 50%
5-6 1 12.5%
TOTAL 8 100%
F. Number of years Living
with Spouse
Range
21-30 2 25%
31-40 3 37.5%
41-50 3 37.5%
TOTAL 8 100%
G. Number of Years as
Spousal Caregiver
Range
1-2 1 12.5%
3-4 2 25%
5-6 4 50%
7-8 1 12.5%
TOTAL 8 100%
Table 1InformantsProfile
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Informant #1 is a 73-year old female who is a retired teacher from Iloilo
and is now residing in Cavite. She has been married with her husband for 45
years and blessed with four children; three males and one female, all are
married except for the youngest son. Shes been taking care for her husband
since he got sick five years ago.
Informant #2 is a 60-year old male, real estate broker and an ex-
overseas worker residing in Noveleta, Cavite. Their marriage for thirty-seven
years was blessed with two children. The female offspring who is the eldest
is married with two kids lives in England with her family. The youngest who is
thirty-two year old male is a seafarer and is still single. Informant #2 has been
her wifes primary caregiver for the past two and a half years.
Informant #3 is a 61-year old retired seafarer residing in Las Pinas
City. He and his wife are blessed with four children, two males and two
females. The two older siblings are both married with children while the other
two are still single. He had a son who is a nurse in the selected research
locale which made him well-informed of the health status of his wife.
Informant #4 is a 63year old female from a far town of Bulacan. She
had been a spousal caregiver for seven and a half years to her husband who
used to be a fisherman prior to the diagnosis of his disease, they have three
children, and the eldest and only female is married while the two bachelors
are both seafarers and the ones supporting their parents.
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Informant #5 is a 62-year old female residing in Hagonoy, Bulacan.
She had previous jobs like toll gate collector and clerk in the Department of
Agriculture. She has been a spousal caregiver for more than five years
whose marriage for forty-years was bestowed with five children; one died
when still a child, two are married while the two others are still single.
Informant #6 is a 56-year old female, from Novaliches, Quezon City, a
home maker and married to an ex-ship captain for almost 26 years and
bestowed with two children, the eldest who is male is twenty five years old,
still single and helps support the family. The youngest is a thirteen year old
female studying in high school. Informant #6 has been a spousal caregiver for
around three years.
Informant #7 is a 70-year old female from Valenzuela City. She was a
former dressmaker with four children, all professionals and all single and are
all supportive of their father. Informant #7 has been a spousal caregiver for
almost five years to her husband whom shes been married for 48 years.
Lastly, Informant #8 is a 58-year old female residing in Pasay City. She
used to work as a bank teller in Manila. She has been married with her
husband for the past twenty five years and are blessed with two sons both
single, the eldest is a seafarer who has been very supportive of the family
ever since their father got sick. The youngest son has just graduated from
college. Informant # 8 has been a spousal caregiver for almost four years
now.
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Instrumentation
Methods of data collection were in-depth interviews and field notes.
These strategies were chosen to generate an exploration of the informants
experiences.
Interviews
Individualized meetings with each of the informants were made
during the scheduled hemodialysis treatment of their spouses. The
researcher first sought to gain the trust and confidence of the
informants for them to verbalize and share their lived experiences in
spousal caregiving. A set of interview guide questions were used
wherein follow up questions were raised based on the responses of the
informants. The main focus of the in-depth interviews were geared
towards the dynamics of their caregiving experiences which were
made for three times until such time the point of saturation was
achieved. While their spouses are hooked to hemodialysis machine,
audio recorded interviews were conducted in places they were most
comfortable to open up their lived experiences like the back part of the
hospital chapel or a vacant private room in the hospital. The
researcher made sure that all of the informants were focused, and
calm during each session.
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Field Notes
The generated transcript file contained raw data from the
interviews while the personal files detailed chronological account of the
informants and their settings The information contained in the personal
file enabled reconstruction of conversations rather than simply relying
on a contextual verbal recording. Information on reflections and
insights of informants were also included.
Data Gathering Procedure
The researcher wrote a letter stating the study particulars to the
hospital director thru the chief nursing officer in order to secure a permit to
conduct research. Informed consent was secured by presenting the
prospective informants with the purpose of the study and made the details
clear and well understood. Informants were asked to signify their approval to
participate by affixing their signature in the consent form.
Informants were met individually up to three times each during their
convenient time while their spouses are hooked to the hemodialysis machine.
Each interview session lasted for thirty minutes or more as may be permitted.
Demographic data of the informants were first collected to provide a
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background of the caregiving experience and to describe the informants. For
convenience, medium of communication was in Filipino. A set of guide
questions was used as prompts if informants find difficulty in expressing their
ideas. Follow up questions based on the responses of the informants that
serve also as clarifications are made throghout the audio recorded interviews.
Ethical concerns such as confidentiality was observed by assigning
codes for each informant while veracity was exercised by destroying the
audio recod of interview after transcriptions are completed. Autonomy was
practiced by telling the informants of their right to terminate the interview or
pull out from participation at any time without any liability.
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Figure 2
Data Gathering Flowchart
Secure permission to conduct the study from the Hospital Director thru
the Chief Nursing Officer
Explain the purpose and disclose to the Informants all necessarydetails regarding the study.
Secure signed consent from the Informants
Schedule individual interview sessions with each of the Informants
Conduct a face to face, audio-recorded interview with the informants
EXPLICITATION OF DATA
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CHAPTER 4
PRESENTATION, ANALYSIS, AND INTERPRETATION OF DATA
This chapter presents and interprets the data gathered from each of
the eight informantsstories of their lived experiences as spousal caregivers.
Themes that Emerged from the Lived Experiences
Based from the narration of the informants, the researcher was able to
see the commonalities in their experiences as spousal caregivers. Through
the use of methodological interpretation inspired by Collaizi, themes were
created and drawn. The analysis generated four major themes: Facing the
Adversities, Marital Bond, Coping with the Challenges, and Glimpsing the
Future. The following themes are presented and discussed in the next
paragraphs.
Theme 1: Facing the Adversities
Sub-themes: Worries of a Spousal Caregiver
Unforeresen Struggles
Living the Reality
The first theme Facing the Adversities reveals the awareness of the
informants as they discover the difficulties embracing their spouses illness
and treatment. The realities were hardships for many as they tried to
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familiarize themselves on how to deal and survive in their current situation.
Based from the verbatim of the informants, they believe that they were given
trials by God for having difficult situation like these.
To further understand their lived experiences, the subthemes are
presented individually:
1. Worries of a Spousal Caregiver
Caring for an ailing spouse is not an easy role. Witnessing a loved one suffer makes
ones heart bleed. A number of concerns surely come across the way. The first
concern of the spousal caregivers is the lack of knowledge about hemodialysis. Most
of them are not medically inclined. Some barely know about treatment processes per
se. They just rely from the information coming from the health care professionals.
One informant verbalized: Hindi ko pa talaga alam noon kung ano ang nature
ng sakit na yon dahil ah bago pa sa aking pandinig, kaya hindi ko alam na
ang sakit pala na iyon ay panghabang buhay na gagamutin (I #1).
Spousal caregivers often feel so much stress since they are living with
the person they are caring for, which doesn't provide for any physical or
emotional breaks. They have also invested so much emotional attachment
with their life long partners thats why spousal caregivers sympathize with the
sufferings of spouse and develop anxieties due to the series of unfortunate
events that happen to them as narrated by the caregivers: Of course, devastated
kasi alam ko more or less maraming bagay ang hindi na nya pwedeng
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gawin,....alam kong magiging mahirap ito para sa wife ko (I#2). Still another
one expressed:Syempre nag-alala, nalungkot ako kasi may edad na ang asawa
ko, naawa ako sa kanya sigurado mahihirapan sya, di naman yan nagsasabi, tinitiis
nya lang ang nararamdaman nya kasi ayaw nya na nag-aalala o nahihirapan ako sa
kanya. (I #1)
According to Richard Schulz, Ph.D.,(2011) caregiver expert at the
University of Pittsburgh that "It is important that the spouse continue to do
some of the activities she or he likes, whether it is singing in the church choir
or going to the monthly book club meeting, so that he or she continues to
socialize outside of the home and give themselves a breather."
Being an ordinary spouse is way different from being a spousal
caregiver. Most of the informants believed that sometimes they were
confused of their real roles with their partners. "It is important that, as a
caregiver of a spouse, you don't assume you can handle everything," said Dr.
Schulz. In a study in the Journal of the American Medical Association, it was
found out that spousal caregivers who experienced mental or emotional
strain were more likely to die sooner than non-caregivers. Sometimes even
the most resourceful person needs to ask for help from other family members
or outside professionals. Spousal caregivers think that they have been treated
as simply caregivers or helpers and not as husbands and wives as vervalized
by one caregiver: Kung minsan parang pakiramdam ko ay katulong lang ang
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tingin nya sa akin, kasi lahat ng utos nya, lahat ng gusto nya kailangan kong
gawin para hindi na lang sya magalit sa aming mag-iina.(I #6)
Another worry of a spousal caregiver is the fear of death of their
partner. It is said that no one can ever be prepared if death will be
experienced with a loved one. In the cases of the informants, even though at
the back of their minds, the fact that their spouses have a chronic ailment and
the possibility of death is absolute, they reject the idea of death as an option
to end the suffering of their spouses. They fear death because of different
reasons. ......di pa naka graduate ng college ang panganay naming
anak......yong bunso naman ay nasa elementary school pa lang nong time na
yon. Pakiramdam ko ay hindi ko kakayanin ang lahat.(I #6)
Mostly they fear of being alone. According to one spousal caregiver:
Nag-arrest ang misis ko, halos kalahating oras siya nirevive sa ICU.
Tinubuhan siya sa bibig at kinabit sa ventilator. Binomba daw ang kanyang
dibdib. Akala ko nga sa pelikula lang ang ganung eksena....... Kahit na sino at
walang pinipiling panahon....... Sobrang natakot ako ng mga panahon yun
kasi akala ko iiwan na ako ng aking asawa at hindi ako handa. (I #3)
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2. Unforeseen Struggles
Among the unforeseen struggles that the spousal caregivers see is the
tendency to lose hope. Hope is the state which promotes the belief in good
outcomes related to events and circumstances in one's life. Despair is often
regarded as the opposite of hope. Hope is the act of looking forward to
something with desire and reasonable confidence or feeling that something
desired may happen. It is noticeable in the patients behaviours that they are
losing the thread of hope to live life longer. One informant recounted: Kung
minsan naman, ayaw pumunta dito sa ospital, pabayaan na lang daw namin
syang mamatay, eh sabi ko pwede ba yon,....... tapos ikaw naman ay ganyan,
ayaw tulungan ang sarili. Wag na rin daw ako magpapaniwala sa sinasabi ng
doctor, pwede ba ikako yon.........Tapos sya mismo kung minsan ay gusto
nang sumuko, minsan nanghihingi ng kutsilyo, magpapakamatay na daw sya,
sabi ko naman, kumuha ka sa kusina kung makakatayo ka. Minsan
naggagalitngalitan na lang ako pag makulit, sabi ko sa kanya, mag intay ka,
kung kalian ka sunduin ni Lord, wag kang magmadali. (I #7)
Hemodialysis involves puncturing of a huge needle in the fistula or access of the
patients. For some reasons, successful venipunctures are done only after two or
more attempts which bring pain and trauma to the patients. These occurrences are
really hard for the spousal caregivers. They cannot do anything but to remain silent
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and wish that nurses would be able to shoot the needle one time only. According to
Informant # 2: More so, nang makita ko ang actual procedure sa pagda-
dialysis, naisip ko, kung ako siguro ang pasyente, I would have fainted.
All of the spousal caregivers pity their spouses especially when their
health condition begins to worsen. Sometimes, dialysis patients are very
weak during the treatment. They complain of headache, body malaise, and
difficulty of breathing which could result to hypotension or sometimes
hypertension. These manifestations truly put the spousal caregivers in uneasy
feelings. One informant said regarding this:Habang tumatagal nakikita ko na
nahihirapan sya, hindi na makatayo at makalakad, naka wheel chair na lang,
di na makakain mag isa, kailangang subuan, minsan nahihirapan ding
huminga, sabi ng doctor maaring epekto rin ng thymoma, kasi kahit benign
yon, patuloy pa rin sa paglaki pero hindi na pwedeng operahan kasi di na
kakayanin ng katawan nya.(I #7)
Aside from these, spousal caregivers also have to face and be extra
patient about the changes in the temperament of their spouses inorder to
avoid more conflicts in the relationship. They all agreed that they have to
understand the feelings of their partners even though their patient-spouses
have already crossed the borderline of their patience. One female informant
verbalized her feelings: Naku, magkulay lang ako ng buhok ay galit na. Ano
kako ang gagawin ko ay sa puro puti na ang buhok ko, ayaw ko namang
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magmukhang sobrang kawawa.........Dito na nga lang kako ako palagi sa iyo
nakabantay, gusto mo naman yata ay nakasiksik na lang ako sa isang
sulok............Pero pag nawala naman ang galit ko, naawa na lang din ako sa
kanya. Inuunawa ko na lang, unawang unawa dahil alam kong sa akin lang
sya nagdedepende..........Kapag nagagalit siya hinahabaan ko na lang ang
aking pasencya. (I #8)
3. Living the Reality
Even in the best situations, adjusting to the effects of kidney failure and
the time patients and spousal caregivers spend on hemodialysis can be
difficult. Aside from the "lost time," they may have both less energies. They
often may need to make changes in their work or home life, giving up some
activities and responsibilities. Accepting this new reality can be very hard for
them and their family. Many patients feel depressed when starting dialysis, or
after several months of treatment and when they are depressed their spousal
caregivers are also feeling the same way. In the verbatim of one informant
about the experiences of hardships towards hemodialysis:Taga Bulakan po
kami, malayong lugar sa Bulakan, nagbabangka pa kami bago magta- tricycle
tapos bus bago makarating dito sa ospital. Kung minsan pag ginagabi kami
ng uwi, sa bahay ng anak ko sa Cavite na lang muna kami nagpapalipas ng
gabi kasi mahirap sumakay papunta sa amin.(I #4)
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All of the informants verbalized that they were obligated to change their
lifestyles due to effects of the hemodialysis. They spend most of their time
waiting for several hours until the dialysis is over. According to one informant:
Simula ng nag-dialysis ang misis ko, ang buhay namin ang pawang hospital
at bahay na lamang. Wala na kaming oras pang pumunta kung saan-saan.
Kung walang dialysis, nasa bahay lang ako at nagkukumpuni ng kahit ano,
pampalipas oras lang.(I #3)
Effects on human functions of the chronic kidney failure is also one of
the reasons why spousal caregivers think that they are living in the adversities
of their journey. All of the informants decided to channel most of their time as
hands on caregivers for their spouses. Younger informants verbalized that
even their sexual capabilities have been affected due to the physical
constraints of the patients. One informant verbalized that Oo, aaminin ko
may mga bagay kaming hindi na nagagawa sa pagkakaroon ng sakit ni misis
katulad ng sa sekswal na aspeto pero naiintindihan ko naman yun. Hindi lang
naman masusukat ang tunay na pagmamahal sa sekswal na kapasidad ng
isang tao. Mas mahalaga sa akin ang pagsasama at pagkakaunawaan
naming dalawa na siyang nagpapatibay sa aming relasyon.(I #3)
To suit for new life situations, the informants have tried to modify their
behaviours. Being aware that patients suffering from an illness are prone to
develop short-temperament and mood swings that often results to
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misunderstandings and fights, majority of the informants realized the value
of patience and understanding. They all became considerate of the
behavioural changes of the patients. This may sound easy but in reality, it
was an ordeal they will have to deal with as expressed by an informant as
follows:
Maraming nabago simula noong nagkasakit sya at nag dialysis. Dahil nga
hindi nya matangap ang nangyari sa kanya, naging mainitin ang ulo nya, kahit
alam nyang bawal, umiinom sya ng alak. Natakot kaming lapitan sya, lalo na
ang mga anak namin, pero syempre hindi ko pwedeng pabayaan kaya
pinagpapasensyshan ko na lang, tinitiis ko ang lahat. (I #6)
Despite of learned knowledge about hemodialysis, all of the informants
hope hemodialysis may still prolong the life of their patient-spouses. They all
look forward that the treatment can still produce a miracle that would heal and
cure their spouses. They concluded that dialysis is the key to their patients
life. One informant said regarding hemodialysis in their patients life: Ah
noong una, akala ko ay mga dalawa o tatlong beses lang itong gagawin tapos
okey na, yon pala ay panghabangbuhay na, tapos di daw maaring mag
absent dahil masama ang maaring mangyari sa kanya pag tumaas ang
creatinine sa dugo. (I #7)Another one claimed: Ang pagkakaalam ko ay
parang himala na lang kung gagaling pa sya sa kanyang sakit. Kasi ang sabi
ng doctor ay panghabambuhay na ang kanyang pagda-dialysis dahil sira na
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ang kanyang bato, pampahaba na lang daw ng buhay nya yan dahil pag
nahinto syang mag daialysis, tataas ang kanyang creatinine, masama daw
yon sa katawan, nakakamatay (I #6)
In summary, the theme Facing the adversities depicts the over-all
difficulties the spousal caregivers encounter towards caring for partners
undergoing hemodialysis. This is the time in their lives when they come
across situations unusual to them. They became anxious with a range of
concerns with the new realities of life they are headed. They experienced to
live amidst the worries, the unforeseen struggles and the physical and
emotional burn-out for being spousal caregivers.
Theme 2: Marital Bond
Subthemes: Realizing theVows
Commitment to Serve
The second theme Marital Bond whichemerged from the lived
experiences of spousal caregivers signifies the value given by the informants
to the sanctity of marriage as they deal with the realities of the situation they
are in.
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Haviland, Harald, McBride, and Walrath, Dana (2011) defined
Marriage as a social union or legal contract between people
called spouses that establish rights and obligations between the spouses,
between the spouses and their children, and between the spouses and their
in-laws. The definition of marriage varies according to different cultures, but it
is principally an institution in which interpersonal relationships,
usually intimate and sexual, are acknowledged. When defined broadly,
marriage is considered a cultural universal. Speaking of marriage bonds, the
big question would be, do these marriages bonds like matrimonial vows
influences their standpoints about their experiences as spousal caregivers?
Would marriage vows save the relationship until the end?
Marriage vows are very important to the spousal caregivers because
these are the things that uphold their union with each other. The following are
the statements of all the spousal caregivers in testimony with the marriage
vows: for richer and poorer, for better or worse, in sickness and in health, and
until death do us part. Kailangan magsama sa hirap at ginhawa, hanggang
sa kamatayan, kaya iyon ang naktanim sa isip ko, tinanggap ko na ito ang
aking palad, ito ang ibinigay na pagsubok sa akin ng Diyos kaya kailangan
kong kayanin. (I#4)
According to Informant # 1: .... masaya na ako na nandoon kung nasaan
sya. Sa tagal ng aming pagsasama bilang mag- asawa, parang isa na lang
kami. Kung maari ko lang syang hatian sa sakit nya........ hindi pala maari kasi
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kailangan mayroong isa na malakas para makapag-alaga sa may
karamdaman...... While Informant #3 narrated: Natatakot ako na baka
umabot sa puntong pati ako magkakasakit nang malubha. Sino nalang ang
mag-aalaga sa akin at sa aking asawa. Ayoko namang maging pabigat sa
mga anak ko. Lagi ko nalang tinatandaan sa aking sarili na dapat maging
malusog at mala kas ang aking panga ngatawan dahil ako lang ang aasahan
ng aking misis sa aming pagtanda.(I#3)
Realizing the vow for better for worse Informant #2 claimed ........ as I
have said awhile ago, nandito na kami sa stage na may emotional maturity,
so kung noon na wala pa syang sakit may mga attitude sya na
napapagpasensyahan ko, how much more na alam kong hindi madali ang
pinagdadaanan niya....... Siguro dumoble ang pasensya ko, lalo pa nga
nalaman ko na once na mataas pala ang creatinine level ay may epekto ito sa
isip ng tao, so nauunawaan ko sya kung may times na irritable sya o mainit
ang ulo.
Taking in the vow for richer for poorer, Informant # 5affirmed:Ah yong
mga hindi masyadong importante, hindi ko na binibili, kaunting tiis at
sakripisyo, ang lagi kong iniisip ay ang pagpapagamot ng asawa ko.......
2. Commitment to Serve
In the cases of the spousal caregivers, there are two personas that
they were holding up to: as a partner or as a spousal caregiver. Being a
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spouse is way different from being a caregiver and this is sometimes being
one of the major issues regarding spousal caregiving. The big question would
be, when does spousal caregiving starts and when does it stop? When does
the transition of being a spouse turnout to be a spousal caregiver? But the
bottom line is, all of the informants believed that no labels can be tagged to
them either as a plain spouse or spousal caregiver because they know for
themselves that they are doing this to their spouses mainly because of love
and dedication. When suggested by children to hire someone who can help
take care of her husband, Informant # 4 replied: ........kaya ko pa
naman.......makakalakad pa nang maayos, di naman baldado.....siguro pag
kailangan na lang talaga. Para sa akin kasi ay tungkulin ko na alagaan sya
dahil ako ang asawa.
On the other hand, in spite of the love as the foundation of spousal
caregiving, some of the spousal caregivers viewed this subtheme as an
obligation. Myron Old Bear (2008), stated that an obligation is a course of
action that someone is required to take, whether legal or moral. There are
also obligations in other normative contexts, such as obligations
of etiquette, social obligations, and possibly in terms of politics, where
obligations are requirements which must be fulfilled. Informant #1 verbalized:
Sinisikap ko sa abot ng aking makakaya. Lahat ng kailangan nya, lalo na
ngayon, mula sa pagsusubo ng pagkain nya, pagpaligo, pagpunas, pagpalit
ng damit at diaper........hanggat kaya ko, ako talaga ang gumagawa.
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Spousal caregivers viewed the commitment to serve as a subtheme
primarily because of the so-called unconditional love. Rogers (2008) said that
unconditional love is known as affection without any limitations. This term is
sometimes associated with other terms such as altruism, complete love.
Unconditional love, is type which has no bounds and is unchanging. It is a
concept comparable to true love, a term which is more frequently used to
describe love between lovers. By contrast, unconditional love is frequently
used to describe love between family members, comrades in arms and
between others in highly committed relationships. In the whole lived
experiences of the informants, they have shown their unconditional love for
their spouses despite of the depleting health condition of their own partners.
They are willing to give their lives and whole self to keep their spouses going.
They care less about themselves and set aside personal pleasures. It is
undeniably unconditional love for these spousal caregivers to take care of
their partners. They all believed that no one on earth could ever understand
their spouses better than them because in the law of God and man they are
one body and one soul. Well, I can say na nagagampanan ko naman yong
aking part as a husband, kagaya nga ng ipinangako namin noong ikinasal
kami, in sickness and in health, nagsu- subscribe naman ako sa ganoong
idea. (I #2). When asked about the factor that keeps him carry on with his
role, Informant # 2 continued: Kailangan kasi natin ang factor ng
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love........gusto mo kasi may pagmamahal ka sa mga bagay na ito. So
nagagawa ko ang lahat dahil mahal ko ang asawa ko. Similarly, Informant
# 4 claimed: Pagmamahal. Kung hindi ko siguro sya mahal, o kung hindi sya
mahal ng mga anak naming, baka wala ako dito, o baka pinabayaan na lang
namin sya. Lagi ring ipinapaalala sa amin noong isang asawa ng pasyente
dito na kailangan magsama sa hirap at ginhawa, hanggang sa kamatayan,
kaya iyon ang naktanim sa isip ko.......
Describing himself as a spousal caregiver, Informant # 3 said: Siguro
ako yung tipong taga pag-alaga na na handing magtiis para sa aking asawa.
Walang imposible sa pagmamahal. Kapag mahal mo ang isang tao lahat
susuungin mo at yun ang aking kayang gawin para sa aking asawa........Alam
mo na hindi habang buhay na magkasama kami kaya lahat ng kaya kong
gawin eh gagawin ko na. Informant #7 has also something to share about
this as follows: As in caregiver talaga. Paggising sa umaga, linisan ko yan,
palitan ng diaper, tooth brush, paligo, subuan ng pag kain, ay lahat.. Mayat
maya tatawag yan, kahit nasa banyo ka, kahit natutulog ka, kailangan mong
bumangon kahit antok na antok ka. May ipapaabot yan, magpapakamot ng
likod, ganon. 24 hours yan, walang tigil basta hanggat kailangan ka, sige
lang, magkano kaya kako ang sweldo ko, wala.( laughs) Still another
spousal caregiver claims: Lahat ng suporta gina gawa ko para sa kanya.
Mula sa pagbibigay ng mga kailangan nya, sa pagpapaalala na kailangan na
nya uminom ng gamot, pagsiguro na kumpleto ang supply ng gamot nya, pag
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sunod sa tamang schedule ng dialysis nya, paglakad sa nga requirements
gaya ng PhilHealth, yon lahat yon ginagawa ko. (I #4)
The lived experiences of the informants towards spousal caregiving
has resulted in a discovery of another kind of partnership together not just
husband and wife but as bestfriends and as companions. One of the
informants stated regarding their lived experiences as creation of friendship
bond that: Well, sa case namin mas lalo pa kaming naging malapit sa isat
isa. Ang turingan kasi namin para kaming magkaibigan, kami na siguro ang
pinaka best of friends sa mundo. Kami na lang dalawa, so kami lang ang
magtutulungan. (I #2)
Somehow, it established an internalpersonal relationship. Harvey and
Pauwels (2009) viewed Interpersonal relationship is an association between
two or more people that may range in duration from brief to enduring. This
association may be based on inference, love, solidarity, regular business
interactions, or some other type of social commitment. Interpersonal
relationships are formed in the context of social, cultural and other influences.
It was evident to the spousal caregivers that they have discovered a new kind
of relationship that they never figured-out prior to the occurrence of the
disease.
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Theme 3: Coping with the Challenges
Subthemes: Physical and Emotional Adjustments
Sense of Control
Adaptive Strategies
The third theme that emerged from the lived experiences of the
spousal caregivers is the Coping with the Challenges. This theme depicts the
different coping strategies that the informants utilized to overcome their
struggles in facing the realities of hemodialysis.
Carver and Connor (2010), termed coping as an adaptive or
constructive coping strategies that reduce stress levels. However, some
coping strategies can be considered maladaptive which stress levels
increase. Maladaptive coping can thus be described, in effect, as non-coping.
Furthermore, the term coping generally refers to reactive coping, i.e., the
coping response follows the stressor. This contrasts with proactive coping, in
which a coping response aims to head off a future stressor. Moreover, coping
responses are partly controlled by personality (habitual traits), but also partly
by the social context, particularly the nature of the stressful environment.
There are three subthemes that emerged from this major theme, they
are as follows:
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1. Physical and Emotional Adjustments
This subtheme is all about the spousal caregivers experience of
exhaustion from the physical constraints of hemodialysis, emotional baggage,
and discovering of new adaptive strategies.
Sandstrom, Rhodin, Lundberg, Olsson, and Nyberg (2010) stated that
physical burnout is a psychological term that refers to long-term exhaustion
and diminished interest in work. Many theories of burnout include negative
outcomes related to burnout, including measures of job function, health
related outcomes, and mental health problems such as depression. It has
been found that people with chronic burnout have specific cognitive
impairments, which should be emphasized in the evaluation of symptoms
and treatment regimes. However, spousal caregivers verbalized how they find
ways ease out or combat physical burnout or exhaustion from physical
activities: Yong physical na pagod, talagang nandyan yon, kasi nanggagaling
kami sa Cavite, so I have to drive quite far, three times a week, balikan, tapos
yong waiting time nila dito, so physically very tiring, sa age ko, very taxing. So
ang ginagawa ko na lang, sinasamantala ko ang time na naka hook sya sa
machine, para medyo makapagpahinga naman ako. (I#2) To address similar
concern, Informant #1shared: Dahil nga sa malayo ang Cavite, di nya
kakayanin mag commute every other day lalo na pag inaabot kami ng gabi sa
pag- uwi, ang anak kong seaman ay bumili ng sasakyan tapos kinuha naming
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driver ang kapit bahay. Yong isang apo ko sa probinsya ay lumuwas dito para
matulungan ako sa mga gawain sa pag aalaga sa kanya.
On the other hand emotional baggage is concerned with unresolved
issues of an emotional nature, often with an implication that is detrimental. In
the cases of the spousal caregivers, they often hide their hurt feelings from
their spouses as narrated by Informant #6:...sinisikap kong laksan ang loob
ko pinipilit kong wag ipakita sa kanya na apektado ako, hanggat maari ay
parang normal lang, kaya minsan, akala nya ay bale wala lang sa akin ang
lahat, kaya .nagagalit sya sa akin.
Spousal caregivers somehow are able to unload their emotional
baggage by which in a way made them feel better: Minsan, naawa rin ako sa
aking sarili, siguro, dala na rin ng pagod at puyat, pag-aalala at takot...pero
inaglalabanan ko kasi hindi ako pwe deng magpakita ng pang hihina sa
kanya dahil alam na alam kong sa akin din sya naka depende at kumukuha
ng lakas, di ako pwedeng panghinaan ng loob, baka mawalan ng ganang
lumaban sa sakit ang asawa ko.(I#5) Meanwhile, Informant #6 also
expressed:Sinisikap ko na lang ding, ano lakasan ang loob ko, kasi ako lang
naman ang inaasahan nya.... Ganon pala yon, kung iisipin mo hindi madali,
pero pag nandon ka na sa sitwas yon na ganito, wala kang choice kundi ang
tanggapin at sikaping makayanan ang lahat. (I#6)
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2. Sense of Control
The spousal caregivers lack confidence during the first months and years of
being spousal caregivers but through the knowledge they have acquired
along the way they became confident with their new role. One informant
verbalized: Nagbasa ako ng tungkol sa pagda- dialysis, ganon pala yon,
pang habang buhay na pala at pag napaliban ay malalason ang kanyang
katawan dahil hindi mailabas ng kidney ang mga dumi sa dugo. Nalaman ko
rin na nakaksira pala ng bato ang maraming gamot na iniinom nya dati.(I#5)
According to Informant #4: Mas lumawak ang aking pang unawa,
dahil alam ko na mahirap ang kanyang kalagayan.........kung matanggap mo
na ang pangyayari sa iyong buhay, mas nagiging madali na ang lahat.....
Gottschalk-Mazouz (2008) stated that knowledge is familiarity with
someone or something, which can include facts, information, descriptions,
or skills acquired through experience or education. It can refer to the
theoretical or practical understanding of a subject. It can be implicit as with
practical skill or expertise or explicit as with the theoretical understanding of a
subject, it can be more or less formal or systematic.
Knowledge indeed is power and an important key in coping. Newberg
and Newberg (2010) explained that experience comprises knowledge of or
skill of something or some event gained through involvement in or exposure
to that thing or event. So to speak, knowledge of the disease mechanism
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eases fear of uncertainty as verbalized by the informants: Ang
pagkakaunawa ko eh ang hemodialysis ay sumasala sa dugo para hindi
malison ang katawan gawa ng mga toxins. Wala na daw kasing silbi ang mga
bato ng asawa ko kaya ang hedodialysis machine na daw ang tumatayong
bato ng asawa ko.(I #3)
One source of knowledge is through the diverse experience of a
person which lies on the experimentation of a person to know the truth. Self-
impetus drives a human being to motivate himself to do the right things. It can
move and accelerate anything. Through experiences, self-impetus grows
accordingly as expressed by Informant # 5: ....noong nag umpisa na nga sya
ay parang unti-unti akong mahimasmasan, marami pala silang may ganyang
karamdaman, nagtanung- tanong ako sa kanila, yong iba tatlong taon, limang
taon na nagda-dialysis pero malakas pa rin, kaya ako ay nabuhayan ng loob.
With all the learned knowledge, acceptance with faith also proved to be of help to
cope with their present situation. These are evident in the narrations of the
informants as follow: Informant # 1: Sa umpisa, mahirap, pero sa katagalan,
parang madali na lang, makakayanan kasi talagang iyon ang ibinigay na
tungkulin sa akin, sa aking buhay, kailangang magampanan ko rin ng
mahusay para sa aking asawa ganon din para sa aking mga anak. While
according to Informant #8: Noong una parang tinatanong ko si Lord, kung
ano ba ang kasalanan ko bakit nya ako binigyan ng ganito kabigat na dalahin,
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pero noong nakita ko at nakausap ang ibang mga pasyente at bantay dito sa
dialysis ay narealize ko na hindi naman siguro ibibigay ni Lord an