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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

hemo dialysis

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