LIVED EXPERIENCES OF PRIMARY CAREGIVERS

OF SCHOOL-AGE CHILDREN WITH PULMONARY TUBERCULOSIS

A Research Proposal

Presented to the Faculty of the Graduate School

PHILIPPINE CHRISTIAN UNIVERSITY

In Partial Fulfilment

of the Requirements for the Course

Master of Arts in Nursing

By:

Rose Ann D. Pawang, RN

TABLE OF CONTENTS

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 CHAPTER 1

The Problem and its Background

PROLOGUE

As a community health nurse, I don’t just worry about the health of one person but the

entire communities at a time. I have a wide range of responsibilities and task that they’re

continuously prioritizing. Although it is a stressful job at times with massive amounts of

responsibility, I find it personally rewarding as well. I am learning new things every day, and

the opportunity for growth is almost unlimited. I feel so good inside when I see improvement in

my patients and also when giving emotional support to patients and family members. Actually, it

gives me inner peace that I was able to help somebody. It encourages me to keep my skills sharp

and think outside the box to handle the situation at hand.

Working as community health nurse in Payatas, my experiences must have an excellent

ways to combine a love of nursing and a love of community. At times, a certain contagious

diseases like tuberculosis and other health issues can spread throughout community and are

being ignored especially when child are being diagnosed. And it is my role as community health

nurse to help keep these community health problems under control. It is also my duty to educate

the community on and work toward preventing common health problems. We have to develop

intervention plans to address health, safety and nutritional issues we discover and educate

patients and family about choices that assist with disease treatment and illness prevention.

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 Despite the challenges in the community where I am in, it is a calling and a love

unending.

Primary caregivers are the main gatekeepers for children’s ability to access testing and

treatment for TB (Murray et al., 2017). Primary caregiver refers to an unpaid family member

who provides care to school-age children who has an illness like pulmonary tuberculosis and

needs assistance to manage variety of tasks, from bathing, dressing, and taking medications.

Primary caregivers plays important roles when caring for a school-age children, they spend a

substantial amount of time interacting with the child, while providing, a wide range of activities.

Primary caregivers should also monitor the child’s adherence to his or her medication regimen

and should keep a schedule of child’s medications. They are also the one who ensure child’s

practices of safe hygiene and consumes a nutritious diet. Primary caregivers should also

supervise the child’s level of activity and ensure that schedules appointments with primary health

care providers are kept. These roles are important because primary caregivers are the critical

partners in the plan of care since school-age children depend on them especially in times of

illness.

Many clinicians regard tuberculosis as an adult pulmonary disease, but tuberculosis (TB)

is a major cause of disease, both pulmonary and extrapulmonary, and death in young children

from TB-endemic countries, especially in areas affected by poverty, social disruption, and

human immunodeficiency virus (HIV) infection. Tuberculosis (TB) is the most common cause of

infection-related death worldwide. According to the most recent estimates, nearly 1 million

children develop TB every year (Jenkins et al., 2014); this is nearly double, World Health

Organization (WHO) estimates of 530,000 cases for 2012, causing 74,000 deaths, which exclude

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deaths in human immunodeficiency virus (HIV)–infected children (WHO, 2013). In 2018, an

estimated 10 million people fell ill with TB, worldwide. 5.7 million men, 3.2 million women and

1.1 million children, there were 205 000 child deaths due to TB (including among children with

HIV).   According to the World Health Organization in 2019 TB is one of the top 10 causes of

death and the leading cause of single infection. It is a potentially serious infectious disease which

enters the body by inhalation and usually affects the lungs.

Community health workers together with the primary caregiver can provide necessary

care in communities that lack easily accessible healthcare. Tuberculosis nurse in the community

not only involves management services required for patient care and treatment, but also includes

an array of public health activities to help prevent and control the spread of disease in the

community which is the ultimate goal of TB nurse case management.

Background of the Study

Despite the fact that tuberculosis is a curable disease, it is still a major cause of illness. It

is a complex disease that has biological, social, economic and cultural effects on patients. In the

Philippines, TB is one of the communicable diseases that contributes substantially to worldwide

disease burden and is still a major health threat worldwide according to the Department of

Health.  It is a serious public health problem affecting an estimated 2.5 million people, and many

who are unaware they have the disease. It is the 6th leading cause of death and illness, with at

least 60 Filipino dying every day from TB and inflicts huge cost to the family household and

Philippines economically according to the Department of Health, 2019. 

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 TB is caused by bacteria. It’s most often caused by Mycobacterium tuberculosis (M.

tuberculosis). Many children infected with M. tuberculosis never develop active TB and remain

in the latent TB stage. TB bacteria are spread through the air when an infected person coughs,

sneezes, speaks, sings, or laughs. A child usually does not become infected unless he or she has

repeated contact with the bacteria. TB is not likely to be spread through personal items, such as

clothing, bedding, cups, eating utensils, a toilet, or other items that a person with TB has

touched. Good air flow is the most important way to prevent the spread of TB.

Children often acquire the infection by living with the contagious adults; however they

do not always become sick. When ill, the recommended treatment is conducted. (Almeida, 2014)

Each child has a family. A family is a group of people who are related to one another either by

blood, marriage or adoption who live together for periods of time. The father, mother and

children form the nuclear family and adults in the family assume the responsibility of caring for

the younger members. Some members of the family take care of those who are incapable of

caring for themselves because they suffer from TB and or other diseases. (Lebese, 2012)

Most children have primary caregivers that are providing some level of care and support;

it may be a mother, father, grandfather, grandmother, elder sister or brother. Treating children

with tuberculosis is challenging, they depend on adults to treat them. However, it is possible to

achieve excellent outcomes in a wide range of settings and with varying resources. It is necessary

that community health nurses work together with primary caregivers to secure their commitment

to treatment adherence of their child.

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 With this in mind, this study is relevant to understand the situations and lived experiences

of the primary caregiver caring of the school-age children with pulmonary tuberculosis.

Community nurses and primary caregivers rarely agree about specific needs or problems during

diagnosis and treatment, in part because nurses are often unaware of the strength and weaknesses

of both the patient and the primary caregivers. Due to inadequate knowledge and skill, primary

caregivers may be unfamiliar with the type of care they must provide or the amount of care

needed. Primary caregivers may not know when they need the community healthcare providers

and resources, and may not know how to access and best utilize available resources, thus school-

age children with pulmonary tuberculosis who are in need of support won’t be able to receive

proper treatment and care they need.

Purpose of the Study

The purpose of this study is to explore the lived experiences of the primary caregivers of

school-age children with pulmonary tuberculosis taking TB medications; to explore caring

behaviour of the primary caregiver when caring for the school-age children with pulmonary

tuberculosis; to identify and describe the challenges faced by the primary caregivers while caring

for the school-age children with pulmonary tuberculosis. 

Statement of the Problem

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 Creswell (1998) suggested that the qualitative research process starts with a grand tour

questions followed by relevant sub-questions. The grand tour questions that will guide this

study is “How would you describe your experiences as primary caregivers caring for school-

age children with pulmonary tuberculosis?”

To acquire the answer to this query, some sub-questions were asked:

Sub Questions:

1. What are the lived experiences of primary caregivers with a child with pulmonary

tuberculosis?

2. What are the challenges encountered by the primary caregivers in taking care of a child

with pulmonary tuberculosis?

3. What are the adaptive strategies utilized by the primary caregivers on the challenges

they have faced in taking care of a child with pulmonary tuberculosis?

4. Based from the findings, what learning and development programs may be proposed to

enhance the capabilities of primary caregivers in handling children with pulmonary

tuberculosis?

Scope and Limitations -Past Tense

The research will primarily focused on describing and exploring the lived experiences of

a primary caregiver of the school-age children with pulmonary tuberculosis who are taking TB

8
medications at least three months in Payatas Community. Polit and Beck (2011), Colaizzi

suggested that any person who has experienced a phenomenon and is willing to communicate the

experience could provide data. This research was will be based on questionnaires with at least 5-

6 specific questions to be answered by participants. It will focused on the personal experiences of

the primary caregivers in caring for the school-age children with pulmonary tuberculosis. The

data will be collected using the unstructured interview method. The interviews wasill be

conducted as normal conversations with the purpose of producing more in-depth information on

the subjects concerned (Brink, 1996).

Significance of the Study

The generalization of this present study would be a great contribution to the vast

knowledge in relation to focusing on the lived experiences of primary caregivers in  caring for

the school-age children with pulmonary tuberculosis. Vital results of this investigation could be

highly significant and beneficial specifically to the following:

Primary caregivers. This study is very beneficial to primary caregivers to gain a sense of

empowerment in taking an active role in caring for the school-age children with pulmonary

tuberculosis or a feeling of satisfaction that they are doing something to improve the health and

future of the school-age.

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Community. This will help the community to know the lived experiences of primary caregivers

and be able to give support and provide available resources to specific family in taking care of

school-age children with Pulmonary Tuberculosis.

School-Age Children. This study will be beneficial to ensure child’s well-being because

primary caregivers can learn from the result of this study and be able to handle and address the

different problems of the child.

Teachers. This study will also be beneficial to teachers since they are the primary caregiver’s

partner in terms of child’s learning development skill. It will enable teachers to understand

children who are sick and find ways to improve their learning and health as well.

Health Care Providers. The study is advantageous to health care providers in assessing and

making plans for interventions to motivate and recognize primary caregivers in their efforts and

in reinforcement of what caregiver can do to ensure the most successful treatment.

Future Researchers. This study may generate thoughts or information for future researchers

specifically on the lived experience of primary caregivers caring for school-age children with

pulmonary tuberculosis.

Definition of Terms

            The following terms will be defined for clarification and consistency for the

interpretation of the results.

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Lived Experience refers to the way individuals make sense of the phenomenon. It may be

a positive or negative experience of primary caregivers in caring for school-age children with

tuberculosis.

Primary Caregivers refers to a family member or any  person who are providing care and

support to a school-age children

School-Age Children refers to a child ages 6-12 years old, enrolled in school and is diagnosed

with pulmonary tuberculosis taking TB medications at least three months.

Pulmonary Tuberculosis refers to a contagious, airborne infection that primarily attacks the

lungs. 

Assumptions

            It is important to identify assumptions and preconceptions related to the phenomenon.

This will enable us to reveal the experiences without preconceived ideas. In this study, the

researcher assumed that: 

1.    The primary caregivers, it may be a family member or any person giving care to school-

age children with pulmonary tuberculosis.

2.      The school-age children are 6 years old to 12 years old, enrolled in school and

diagnosed with pulmonary tuberculosis taking TB medications for at least three months.

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CHAPTER 2

This chapter presents the review of related studies which are related to the present study

and are bases of the necessary background information on theories and methodology. The

significant literature presented in this research work was taken from books, magazines, internet

sources and published and unpublished materials. 

Tuberculosis is still a major cause of illness and death in children worldwide. In 2016, the

World Health Organization (WHO) estimated that 6.9%of 6.3 million new tuberculosis cases

were children and 210,000 deaths occurred among children. The WHO also estimated that 1.3

million children less than 5 years old were living in households with tuberculosis cases, but only

13% of them received tuberculosis preventive treatment. Most cases of tuberculosis in children

occur in tuberculosis-endemic countries, which are the second-highest tuberculosis-burden

country worldwide in 2016 (International Journal of Nursing Sciences, 2019). 

The most common cause of tuberculosis among children is household contact,

particularly from parents. Given their immunity, children younger than 5 years are at a high risk

of infection. Children usually spend ample time with their parents and sleep in the bed with

them. In consideration that children with tuberculosis infection present with non-specific

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symptoms, many parents are unaware of their child’s condition. Tuberculosis can cause mortality

or severe conditions that often result in permanent disability or death (Windy, 2019).

Children who have had contact with patients with TB but who are not ill typically receive

isoniazid (chemoprophylaxis) for 6 months when tuberculin test reactivity is present. Because

TB treatment is often prolonged, patients frequently discontinue when a general improvement

occurs. To increase treatment adherence and cure rates, as well as reduce the risk of disease

transmission within a community, the “Directly Observed Treatment (DOT) strategy” was

created. 

DOTS (Directly Observed Treatment, Short Course) is the internationally recommended

control strategy for TB. This strategy includes the delivery of the standard short course of drugs,

lasting six months for new patients and 8 months for retreatment patients, to individuals

diagnosed with TB. The delivery includes the direct observation of therapy (DOT), either by a

health worker or by someone nominated by the health worker and the patient for this purpose

(sometimes called a DOT supporter.) The strategy has been promoted widely and implemented

globally.  Efforts to improve treatment outcomes require a better understanding of the particular

barriers to and facilitators of adherence to TB treatment, and of patient experiences of taking

treatment. 

DOT consists of observing the ingestion of drugs on all working days during the attack

phase and at least three times per week during the maintenance phase of treatment. The drugs are

13
administered by the health professionals or any duly qualified person under nurse supervision.

(Lewin, 2017)

In the Declaration 1 of Alma-Ata, International Conference on Primary Health Care on

September 12, 1978, it strongly reaffirms that health, which is a state of complete physical,

mental, and social well-being, and not merely the absence of disease or infirmity, is a

fundamental human right (PJN, 2008 July-December). Thus, what if the one who will provide

the necessary care in a person of primary caregiver has not attained that healthy stage because of

some stresses and challenges that affects them. How about the care needed by the child who

depends on the primary caregiver.

In the study conducted by Lebese, 2012, family member or primary caregivers of

children with tuberculosis  plays many and critical roles in seeking healthcare for their children

from the assessment of adverse effects of medication, such as deafness, gastrointestinal upset,

skin rashes, hypotension and many medical problems. In addition, the caregiver should monitor

the patient’s adherence to his or her medication regimen and should keep a schedule of the

patient's medication. The caregiver should also ensure that the patient practices safe hygiene

and consumes a nutritious diet. Caregivers should also supervise the patient’s level of activity

and ensure that the scheduled appointments with primary health care providers are kept. These

duties and experiences pose challenges and exert pressure on family members who are caring for

TB patients at home. 

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 Lebese, 2012 added that living with and caring for a child with TB may cause problems

within the family that are difficult to deal with. Besides the pain of watching a loved one suffer,

family members may experience the shame, resentment and guilt. It may be very difficult for

family members to accept the illness and adjust to the fact that despite their efforts to care for

them, the condition of their loved ones might become worse. The duties of primary caregiver

may include caring for the patient after early discharge from hospital, providing social support,

and carrying out other activities such as leaving for work every morning despite the fact that they

also act as caregivers.

Bermis, et.al, 2017, asserted that primary caregivers often feel unprepared to provide

care, have inadequate knowledge to deliver proper care, and receive little guidance from the

formal health care providers. Nurses and primary caregivers rarely agree about specific needs or

problems during time of illness, in part because nurses often unaware of the strengths and

weaknesses of the both patient and caregiver. Due to inadequate knowledge and skill, caregivers

may be unfamiliar with the type of care they must provide or the amount of care needed. Primary

caregivers may not know when they need community resources, and then may not know how to

access and best utilize available resources. As a result caregivers often neglect their own health

care needs in order to assist their family member, causing deterioration in the caregiver’s health

and well-being.

In the study conducted by Seddon et. al., 2014, affirms that assessment of caregiver could

also identify individuals at risk of experiencing pathological stress, anxiety, or depression. While

most participants did not report changes in family relationships, a minority highlighted acute

15
distress, including spousal separation. Research has shown that caregivers may experience high

levels of disability-related stress resulting from the strain of dealing with ill child. This was

evident in caregivers’ account of their own physical and mental health struggles, which were

frequently aggravated during the child’s illness. In turn, children’s psychological vulnerability is

especially pronounced when parents suffer from poor health and emotional distress. As

caregivers almost always accompany children to medical appointments, health professionals

could use this setting to assess the presence of stressors which may impact on caregivers’ well-

being and management of childhood illness.

According to Emerson et. al., 2019, caregivers gave several reasons for suspecting their

child had TB, with the most common being another family member had TB. Caregivers also

suspects TB because their child was ill and did not improve even after visiting multiple

healthcare facilities or having repeated clinic visits for treatment. Several caregivers noted seeing

educational information that alerted then to the possibility that their child may have TB. Once

their child had received a TB diagnosis, most caregivers reported no challenges starting their

child on TB medications. Of those caregivers who experienced challenges, the most common

was the lack of pediatric drug formulations for TB, taking medications consistently, and financial

difficulties that hindered their ability to buy nutritious food while the child was on TB treatment.

In addition to Emerson, multidisciplinary care is a crucial component of the successful

management of children with tuberculosis. The child and caregiver should be engaged as active

members of healthcare team. Support from dietician is frequently helpful in monitoring and

planning caloric intake and the correct balance of nutrients, vitamins and minerals.

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Physiotherapy and occupational therapy are the benefit not only for children with

neurodevelopment involvement but also for those with respiratory and musculo-skeletal deficit.

Social services should assess home circumstances and support the caregiver to look after a child

who may have complex medical needs and must take multiple medicines. They must also assist

the family in securing any funding that they are eligible for to assist in the process of home-

based care. In the cases of neglect, abuse, or drug and alcohol use, child placement with

alternative caregivers maybe necessary. In areas of limited resources, many of these key tasks

can be performed by other health workers. On-going education is important, caregivers must also

receive health education regarding their child conditions and the children should be encouraged

to return to school when they are no longer infectious.  

Seddon et. al., 2014 revealed that there is a need for psychological support of both

children and caregivers to mitigate the potential negative effects of stigma, and help them

manage difficulties related to disclosure. Multi-level intervention should aim to provide a

framework of support for children and their families, beginning at the time of diagnosis and

continuing into the child’s outpatient treatment.

Intervention for caregivers as clients in the study of Bermis, et.al, 2017 provides

substantial evidence that caregivers are hidden patients in need of protection from physical and

emotional harm. Interventions directed to the caregiver should serve two purposes. First,

interventions can support the caregivers as client and directly reducing caregiver distress and he

overall impact on their health and well-being. In this intervention approach, the caregiver is the

recipient of the direct benefit and the patient benefits only secondarily. Second, interventions can

17
be aimed to make the caregiver become more competent and confident, providing safe and

effective care to patient, which can indirectly reduce caregiver distress by reducing their load or

increasing their sense of certainty and control.

Research Paradigm

Phenomenon Investigating Reflection on Analyzing research

of interest experience essential themes context

Describing the
phenomenon

Maintaining
strong relations

In conducting this investigation, the researcher used the phenomenological

approach in an attempt to discover life experiences of individuals. The investigator looks

into the experiences of primary caregiver as it attempt to explore and analyze the

challenges and adaptive strategies. The examiner investigated the individuals using

exploratory questioning, then, transcribed, coded, clustered and analyzed using sub-

themes and themes that further describe the phenomenon while maintaining strong

relationship. This, in turn will conveys critical learning.

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 CHAPTER 3

Methods and Procedures METHODOLOGY

This contains the research design, the population and the sampling for this research, the

instrumentations and the data gathering procedure, data analysis and the methodological

limitations.

Research Design Past tense

This study will employed Interpretative Phenomenological Analysis (IPA). It aims to

give definite assessments of personal lived experiences. It delivers a record of lived experiences.

It is explicitly idiographic in its obligation to examining at the detailed experience of each case in

turn, before the transition to more broad cases and claims (Smith & Osborn, 2015). According to

Smith and Osborn, IPA is a particularly useful methodology for inspecting themes which are

perplexing, equivocal and emotionally laden. The method is phenomenological as it requires an

19
intensive examination of the participants. It means to examine individual's information and

concerns a person's translation or portrayal of an article or event rather than an effort to make an

empirical statement of the thing or event itself.

This qualitative research approach provided researchers the most selected opportunity to

understand the innermost reflection of research participants' lived experiences. According to

Alase (2017), IPA presents the research participants a chance to tell their story without distortion

or prosecution. Significantly, it allows them to express themselves in a manner that is fitted to

the context. The researcher decided to utilize the IPA approach to emphasize the study's primary

objective, which is to identify the lived experiences of lived experiences of primary caregivers

of school-age children with pulmonary tuberculosis in the Payatas Quezon City. As such, the

method is phenomenological for the study dealt with the experience of self. Through this, the

researcher wasill be able to investigate the underlying concern of the current study by describing

and interpreting the participants' lived experiences based on their own perspectives.

Research Locale

Tuberculosis occurs mostly in poor and vulnerable populations like in the landfill

community of Payatas, Quezon City where the study will be conducted.  The strong smell of

garbage will welcome people with the sound of children playing in the same streets. Payatas is

known because of the dumpsite that is still the largest dumpsite in the Philippines. Payatas is

considered as one of the most depressed areas in Manila and scavenging has been the way of life,

hence many of the residents from underprivileged families built their homes surrounding the

area. 

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 The Payatas community mirrors the harsh realities of poverty. School-age children who

are vulnerable with diseases are also often required to work from a very young age. They

scavenge to put food on the table. They brave the unpleasant condition to have shelter. They stay

and endure everything just to survive.

Participants of the Study PAST TENSE

The study will utilized purposive sampling. According to Arikunto (2010: 183),

purposive sampling is the process of selecting sample by taking subject that is not based on the

level or area, but it is taken based on the specific purpose. Purposive sampling is where a

researcher selects a sample based on the needs about the study. The participants wereare selected

based on the purpose of the sample. Participants warere selected according to the needs of the

study. This involves identifying and selecting individuals or groups of individuals that are

especially knowledgeable about or experienced with a phenomenon of interest (Cresswell &

Plano Clark, 2011).

These werewill be the inclusion criteria in the study:

1.  Primary caregivers of school-age (it can be a family member or someone in legal

age that is responsible for caring for the school-age children).

2.  School-age children aged 6-12 years

3.  School-age are enrolled in school

4.      School-age are diagnosed with pulmonary tuberculosis with TB medications

Data Gathering Procedure PAST TENSE

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 Prior to the interview, informed was consent will be given to the participants and let them

sign for the confidentiality of the information gathered. The researcher will aske permission from

the participants. After the approval, the researcher will scheduled an interview following the

protocols for health purposes. The interview responses wereill be transcribed, coded, and

analyzed. Trustworthiness, also called validity in qualitative designs, is the degree to which the

interpretations have mutual meaning between the participants and the researcher (McMillan &

Schumacher, 2006). According to Creswell (2009), validity is one of the strengths of qualitative

research, and it seeks to determine whether the findings from the standpoint of the researcher, the

participants, or the readers of an account are accurate.

To achieve data trustworthiness and rigor, their credibility werewill ensured through the

consistency of responses of the participants. There was awill be continuous data analysis

(transcribing responses and reviewing them to develop the main themes). Each participant

wereill be given the code in order to hide their identity and only referred to by his or her code.

The interview will be conducted in a location where the participant is comfortable. It wasill be a

face to face talk approximately 20-30 minutes and waswill be audio-recorded. Most probably,

data is in local language and will be translated to an English format. When no new codes,

concepts, or other information that werewill be provided in the next interviews, the data

collection wereill be considered saturated.

In terms of Dependability and Confirmability of the Research, according to Korstjens and

Moser (2018) dependability refers to the consistency of the findings and checking whether the

analytical process is aligned with accepted standards for a particular design. With regard to

confirmability, Korstjens and Moser (2018) state that it refers to the neutrality in data

22
interpretation and the interpretation of data that is untainted by the researcher’s preferences and

viewpoints.

Ethical Consideration

            

For the success and accuracy of the research, the researcher will obtain permission to

conduct the research. A letter of consent will be given and signed by the participant after each

interview. Furthermore, the rights of the participants to full information will be put into

consideration.  The researcher will explain the nature and the purpose of the study and will

ensure the confidentiality of the information, participant’s privacy and identity, worth and

dignity by not using their real names. Participants will be assured that the person who could have

access in their names was only the researcher. Their audio-recorded interview and or transcript

of the interview will be securely stored in the researcher’s file with password protection. They

will be guaranteed that their information will be coded and stored in a separate filename and

password. Participants will be informed that the files will be deleted after the completion of this

research.

The emotions of the participants will be an issue to be addressed.   The researchers had to

make sure of the participant’s comfort and will remain non-judgemental throughout the interview

process. This will be done in order to create trust and rapport between the researcher and the

participants.

Participants will also be informed about their right to withdraw from the research at any

time without consequences; participant is completely voluntary and no monetary payment.

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Measures to Ensure Trustworthiness

Lincoln and Guba’s (1985) model of trustworthiness will be applied in this study by

following the four criteria which are credibility (truth value), transferability (applicability),

dependability (consistency) and confirmability (neutrality). Lincoln and Guba describe a series

of techniques that can be used to conduct qualitative research that achieves the criteria. 

The techniques for establishing credibility: 

 Prolonged Engagement

Spending sufficient time in the field to learn or understand the culture, social setting, or

phenomenon of interest. This involves spending adequate time observing various aspects of a

setting, speaking with a range of people, and developing relationships and rapport with members

of the culture.

 Persistent Observation

The purpose of persistent observation is to identify those characteristics and elements in

the situation that are most relevant to the problem or issue being pursued and focusing on them

in detail.  If prolonged engagement provides scope, persistent observation provides depth"

(Lincoln & Guba, 1985, p. 304).

 Triangulation

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 Triangulation involves using multiple data sources in an investigation to produce

understanding.  This assumes that a weakness in one method will be compensated for by

another method, and that it is always possible to make sense between different accounts. 

  

 Peer debriefing

"It is a process of exposing oneself to a disinterested peer in a manner paralleling an

analytical sessions and for the purpose of exploring aspects of the inquiry that might otherwise

remain only implicit within the inquirer's mind" (Lincoln & Guba, 1985, p. 308)

 Negative Case Analysis

This involves searching for and discussing elements of the data that do not support or

appear to contradict patterns or explanations that are emerging from data analysis. 

 Referential Adequacy

This involves identifying a portion of data to be archived, but not analysed.  The

researcher then conducts the data analysis on the remaining data and develops preliminary

findings.  The researcher then returns to this archived data and analyses it as a way to test the

validity of his or her findings.

The techniques for establishing Transferability:

25
  Thick description

It is described by Lincoln and Guba (1985) as a way of achieving a type of external

validity.  By describing a phenomenon in sufficient detail one can begin to evaluate the

extent to which the conclusions drawn are transferable to other times, settings, situations,

and people.

The techniques for establishing dependability:

 Inquiry Audit

 The purpose is to evaluate the accuracy and evaluate whether or not the findings,

interpretations and conclusions are supported by the data.

The techniques for establishing confirmability:

 Confirmability Audit

External audits involve having a researcher not involved in the research process examine

both the process and product of the research study.  The purpose is to evaluate the accuracy and

evaluate whether or not the findings, interpretations and conclusions are supported by the data.

 Audit Trail

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 An audit trail is a transparent description of the research steps taken from the start of a

research project to the development and reporting of findings.  These are records that are kept

regarding what was done in an investigation.

 Reflexivity

Reflexivity is an attitude of attending systematically to the context of knowledge

construction, especially to the effect of the researcher, at every step of the research process. 

"A researcher's background and position will affect what they choose to investigate, the angle

of investigation, the methods judged most adequate for this purpose, the findings considered

most appropriate, and the framing and communication of conclusions" (Malterud, 2001, p.

483-484).

 Data Analysis

Analysis will be guided by Colaizzi’s (1978) as cited by Lowe (2016) method of data

analysis. This method is appropriate for use with interpretative phenomenological studies and

composed of the seven steps of the analysis process.

1. Transcribe & Familiarize: Each transcript should be read through several times to obtain a

general understanding of the data.

2. Extract Significant Statements: Significant statements that pertain to the phenomenon under

study should be identified and labeled.

27
3. Formulate Meanings: Meanings should be formulated from the identified significant

statements.

4. Cluster Themes: Meanings found throughout the data should be clustered and categorized into

common themes.

5. Create Exhaustive Description: The findings of the study should be written into an exhaustive

description of the phenomenon under study.

6. Produce Fundamental Structure: Statement that describes the essential structure of the

phenomenon.

7. Validate Findings: Present fundamental structure to participants and verify results with their

experiences.

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Figure: Adapted from illustration of Colizzi’s (1978) phenomenological data analysis steps.

Once the interviews will be completed, verbatim transcriptions will be checked and re-checked

for accuracy. After verification of transcript exactness should be accomplished, Colaizzi’s (1978)

steps for data analysis as cited by Lowe (2016) will be conducted. In the first step, each

transcript will be read and re-read in order to obtain a feeling and general sense about the content

as a whole. Review of each transcript will also be accomplished through listening to the audio

interview recording while examining the written transcription simultaneously. During the second

step, the researcher will search each individual transcript for significant statements that pertained

to the phenomenon of the study. For this research, the analysis process involved manual coding.

In the third step, meanings will be formulated from significant statements, and manually coded

for each individual transcript. In the process of fourth step, formulated meanings will be then

sorted and coded into categories, clusters of themes, and themes. Clusters of themes that

29
reflected a particular experience or essence will be then merged to create central themes. This

point in data analysis then leads to Step 5 in which the findings of the study will be integrated

into an exhaustive description of the study. In the sixth step, validation of findings will seek from

research participants to compare the researcher’s descriptive results with their experiences.

Participant feedback will be gathered through e-mail contact. Participants will then be received a

summary of Chapter IV including all of the data analysis results. The objective of performing

member checks is to not only provide validation of the findings, but also discover if any aspects

of the experience will be omitted. Finally, in the course of conducting the last step, no changes

will be made in data analysis/findings as a result of member checks. In its entirety, the

phenomenological data gathered provided an accurate portrait of the general description,

common features, and structural connections of resilience manifest in the data collected

(Creswell, 2013). Results were then integrated into an in-depth description of what the

participants experienced that is rich, thick description of the phenomenon.

PARTICIPANTS OF THE STUDY

Age Gender Type of Primary

Care giver

30
 Participant 1 Respondent 1 42 Female Mother

Participant 2 52 Female MotherFather

Participant 3 71 Female Grandmother

Participant 4 47 Male Father

31
 CHAPTER 4

RESULTS AND DISCUSSION

The results of the data obtained by the researcher are presented in this chapter

with subsequent discussions.

FINDINGS

Several themes were formulated from various subthemes. These are

summarized in the table below together with several excerpts from the statements of the

research participants during the interview.

Table 1: Lived Experiences of the Primary Caregivers with a Child With

Pulmonary Tuberculosis
Subthemes Theme 1
Feeling of Apprehension “It Was A Tough Battle”: Experiences of
Lack of Education Primary Caregivers With a Child With
Pulmonary Tuberculosis

32
 THEME 1 :” IT WAS A TOUGH BATTLE”: EXPERIENCES OF PRIMARY
CAREGIVERS WITH A CHILD WITH PULMONARY TUBERCULOSIS

Lived Experiences Frequency

Feeling of
Apprehension and 4
Insensitivity

Suggestion

Subthemes Theme
‍
‍
Table No. 1 exhibits the lived experiences of primary caregivers with school age

children diagnosed with pulmonary tuberculosis. Specifically, the participants expressed

the following sentiments :

…………………………………….

“I try to act brave but to tell you the truth I am scared of being
infected.”(PC1)

“My son had not been in a good health condition. Now he had TB, I am
worried it would be difficult for her to find a job in the future”(PC2)

“No one at home has ever had TB, and we do not understand this
disease.”(PC3)

“I do not receive much education about this pulmonary TB and I do not know
how much time is required to cure TB.”(PC4)

The feeling of apprehension and lack of education were emerge as the

subthemes in the first identified categorical theme which was “It Was A Tough Battle”:

33
Experiences of Primary Caregivers With a Child With Pulmonary Tuberculosis .Please put
some discussion on this matter.

THEME 2: “A TOUGH ROW TO HOE’’: CHALLENGES ENCOUNTERED BY THE

PRIMARY CAREGIVERS WITH A CHILD WITH PULMONARY TUBERCULOSIS

This subordinate theme discusses the challenges encountered by the

participants. Likewise, the following sub-themes were identified from the data-gathering

and which are based on their own perspectives. As shown in Table 2, the following

subthemes include worries about the disease treatment ,negative emotions ,interruption

to daily work and lack of energy.

Table 2: Challenges Encountered By The Primary Caregivers With A Child

With Pulmonary Tuberculosis
Subthemes Theme 2

Worries about the disease treatment

“A Tough Row To Hoe’’: Challenges
Negative Emotions Encountered bBy tThe Primary
Caregivers wWith aA Child With
Interruption to daily Work Pulmonary Tuberculosis

Lack of Energy

Challenges Frequency
Worries about the
disease treatment 3
Negative Emotions 3
Interruption to daily Subtheme 1 : Worries about the disease
Work 4
treatment
Lack of Energy 4

34
Most of the parents were concerned about the treatment of their children. They actively

cooperate with doctors to provide nutritional support and expect a speedy recovery. The

following two examples were parents’ response during the interview.

“I heard that this is a serious disease and cannot be easily cured. My concern
is if this disease can be completely cured” (PC1).

“What I am worried is the child’s disease situation. I want to provide extra

nutrition support to my child because health is the most important” (PC2).

“I heard that TB cannot be easily cured. I am worrying about my child.” (PC3).

Subtheme 2 : Negative Emotions

Because the parents are faced with many difficulties, they described their worries

and anxieties. Some parents even do not know how to deal with this situation and have

silent tears. The following were parents’ response during the interview.

“I am worried about this every day” (PC1).

“I do not know what to do. The child is not feeling well and I am very worried
about him, but cannot say too much” (PC3).

“I feel worried ,I always have the feeling of fear. ” (PC4).

Subtheme 3 : Interruption to Daily Work

The parents who need to go to work every day have to call personal leave to

take care of their children in the hospital, which severely affects their normal life. The

following were parents’ response during the interview.

35
 “I work in the field. I am selling fruits. My child is sick and I have to stop my job

to take care of my child” (PC1).

“I am an online seller. My child is suffering and I have to give enough time

caring for him” (PC2).

“I was not able to do my household chores routine because of my child/.”

(PC3).

“I give up my work just for my child to give time in caring for her.” (PC4).

Subtheme 4 : Lack of Energy

Because of the caring for the hospitalized children, many parents have no time to take

care of the elderly and other children. A lack of time and energy was reported by the

parents. The following were parents’ response during the interview.

“I have another 5-year old kid at home and I do not have time to take care of

him because of the case of my child” (PC2).

“I have a 80-year old elderly person to take care of and it is difficult to care of

both pulmonary TB diagnosed child and the elderly person. I feel short of time

and energy” (PC3).

“I wake up early daily wash clothes, cook, feed give medication..”(PC4)

THEME 3: “DO THE TRICKS!’’: ADAPTIVE STRATEGIES UTILIZED BY THE

PRIMARY CAREGIVERS WITH A CHILD WITH PULMONARY TUBERCULOSIS

36
 Table 3 :Adaptive Strategies Utilized by the Primary Caregivers with a Child
With Pulmonary Tuberculosis
Subthemes Theme 3

Love and Sympathy “Do The Tricks!’’: Adaptive Strategies

Utilized bBy tThe Primary Caregivers
Support and Appreciation wWith aA Child wWith Pulmonary
Tuberculosis

Lived Experiences Frequency

Love and Sympathy 4
Support and
Appreciation 2

Some of the family caregivers expressed love, support and sympathy, and

believed that the little that they were doing was well received and appreciated.

Subtheme 1 : Love and Sympathy

Having someone of love, support and sympathy means not letting the burden

overwhelms oneself. Specifically, the participants expressed the following sentiments on

their adaptive strategies they used on the challenges they have encountered .

37
 “ I love him and am proud of him despite the condition that he is in today. I
can never abandon my child.”(PC1)

“Looking after my child health needs allows me to show him how much I
love him. No one is more important to me than he is and no one can
replace him.” (PC2)

“I had to do the best I can to take good care of my child so that he can be
in good health again” (PC3)

“I have to sacrifice my time in order to accommodate her condition.”(PC4)

Subtheme 2 : Support and Appreciation

“Sometimes nurses serve me quickly when I for checkup and treatment of my

child.”(PC1)

“Our neighbour always comes by to check on us and family members appreciate

what I am doing for my child.”(PC2)

“They send us money on a monthly basis so that we can buy things that
we need.” (PC4)

DISCUSSION

This study provides valuable insights into the experiences of family caregivers

caring for family members diagnosed with pulmonary tuberculosis . During the

investigation, the researcher found that parents of the students lacked the knowledge

on TB. Other Studies have shown that awareness on the prevention of infectious

disease is relatively low (Gai ,2018). When the suspicious symptoms such as cough,

hemoptysis appeared, they cannot be aware of TB infection. In recent years, active

38
public education of TB has been enriched and expanded (Wang ,2017). Due to the lack

of interest in the knowledge about TB, TB prevention and control is difficult (Yu

et.al ,2018). Lack of the knowledge on TB symptoms, territorial management and free

policies often miss the best timing of treatment, leading to delays in diagnosis of the

disease . Most of the interviewees in this study are from rural areas. They have low

educational level and weak comprehension ability. Coupled with the occlusion of

information channels, parents learn TB mainly from the misconceptions of the family

members or relatives (Long ,2016). The parents cannot provide guidelines to the

children for prevention of TB.

The results of this study also show that family caregivers caring for family

members living with children diagnosed with Pulmonary TB lived hectic lives. They

struggled to balance the demands of their family care giving role, social life, and full-

time occupations, similar to the findings of the previous studies (Demmer, 2018). The

findings from this study also revealed that family caregivers caring for family members

living with TB also experienced stress, anxiety and burnout. This is consistent with the

findings of the previous research where high risk of ill health was found among people

that were over-occupied with family, community and their own lives (Mthembu et al.,

2016; Senthilingam et al., 2017)

The need for physical, emotional and financial support was also evident from the

findings in this study. The study revealed that some family caregivers attending to family

members living with Pulmonary TB struggled with stress and burnout from juggling

between full-time occupations and family caregiving roles such as administration of

treatment and monitoring of side effects. It was also found that they were also

39
responsible for sourcing money, buying groceries, cooking, feeding and washing,

picking up bedridden family members who were sick, and cleaning the house. The

above aspects were consistent with findings of the previous studies (Burtscher et al.,

2016; Kanyerere et al., 2016). The findings of this study also showed that other family

caregivers showed sympathy, indicating that they had positive attitudes towards caring

for relatives living with MDR-TB at home, consistent with the findings of previous studies

(Chinenye, 2018; Lambert et al., 2017). This study also showed that some respondents

had strong feelings of anger, hatred and resentment, consistent with the findings of

previous studies. These feelings were sparked by lack of appreciation, rudeness and

uncooperative behaviour of patients (Chinenye, 2018)

Many parents had anxious emotions and choked with sobbing during the

interview. The parents were mostly worried about the children’s health. Caring

activities also increase the burdens of the parents. After their children get TB, parents

have to adjust their working time and reduce their entertaining activities in order to take

care of their children . Parents take much care of each child. The parents of students

are under the double burden of taking care of their children and the elderly persons.

Therefore, parents often feel everywhere at once and lack of both time and energy.

40
41
 CHAPTER 5

SUMMARY OF FINDINGS, CONCLUSIONS & RECOMMENDATIONS

This chapter presents the report of the immediate results, conclusions and

recommendations regarding the lived experiences of primary caregivers of school-age

children with pulmonary tuberculosis.

Summary

The study aimed to explore the lived experiences of the primary caregivers of

school-age children with pulmonary tuberculosis. Data were gathered through in depth

interview. Data gathering were based on the principle of data saturation. Moreover, the

research catered a qualitative method to describe and understand the lived experiences

of primary caregivers especially their challenges and adaptive strategies utilized in

handling school-age children with pulmonary tuberculosis.

Additionally, the name of the participants was not declared or coded to protect

their confidentiality and for the secrecy of responses to be made by the teacher-

participants .There were four (4) total number of participants in this study . The

researcher used the purposive sampling in identifying the number of participants.The

primary tool in gathering the data was a researcher made interview guide to be asked

during the interview . The interview questions were generated by the researcher and

validated through content validity.

The salient findings are the following :

42
 1. The experiences of the primary caregivers of school-age children with pulmonary

tuberculosis.was a tough battle .The feeling of apprehension and insensitivity

emerged as the subtheme from the first identified major theme.

2. Challenges on the part of primary caregivers were also encountered. Worries

about the disease treatment ,negative emotions ,interruption to daily work and

lack of energy were the challenges emerged after the conduct of the interviews.

3. Different adaptive strategies were utilized by the primary caregiver in order to

survive the challenges they have encountered in handling ,caring and supporting

school age children diagnosed and suffering from pulmonary tubercolosis

Conclusion

In this study, the researcher obtained a deeper understanding of the actual

situations faced by primary caregivers with school age children diagnosed with

pulmonary tuberculosis through personal interview. The experiences of family

caregivers caring for family members living with Pulmonary TB were explored. Family

caregivers caring for family members living with pulmonary TB explained their roles and

the challenges that they faced when they were caring for family members living with

pulmonary TB in their homes. This study showed those family caregivers experienced

challenges that had the potential of hindering treatment adherence and completion by

family members . This study further highlighted needs of family caregivers, which

needed to be addressed in order to improve home care (such as financial, psychological

and medical).

Recommendation

43
 Family caregivers caring for family members living with pulmonary tuberculosis at

home should be provided with some form of financial incentives, which will enable them

to make provision for necessities for themselves and the sick people, as the study

revealed that some of them experienced financial problems. It is also recommended

that family caregivers should be offered basic palliative, home-based and medical care

training in order to capacitate them for their family caregiving role before discharge of

the sick from the hospitals takes place.

Counselling and psychological support should be offered to caregivers to

improve their well-being and ability to deal with the challenges and stress of caring for

family members living with pulmonary tuberculosis. They should be educated in nutrition

and infection prevention, and control measures. This will also assist improve the quality

of care, lack of knowledge and awareness about TB, and preparation of nutritious

meals. The above-mentioned interventions will also assist in alleviating the burden of

care from the family caregivers. There should be improved communication between

health professionals, the NGOs, and communities.

44
REFERENCES

45
 APPENDIX ACES

Letter of Permission to the Participants

April 27, 2022

Dear Participant:

Greetings of peace.

The undersigned MAT-English students of Sultan Kudarat State University – College of

Graduate Studies, ACCESS Campus are presently conducting a study entitled “Teaching in the
far-flung schools: English teachers’ lived experiences, as a requirement for the course Education
601B (Methods of Qualitative Research).

In line with this, you have been chosen as one of our participants in the study. Data gathering
will be conducted through recorded face-to-face, phone, and video conferencing, abiding by
safety health protocols and standards. Thus, we are requesting your full cooperation and
participation in our study.

46
Rest assured that all information gathered will be treated with the utmost confidentiality. All
names will be kept anonymously and used for academic purposes only. We will be happy to
explain our study further and finalize the data collection schedule at your convenient time.

We are hoping that this request will merit your positive response.

Thank you, and God bless.

Respectfully yours,

47
 APPENDIX B

INFORMED CONSENT TO THE PARTICIPANTSRespondents

I have read and understood the letter of invitation to

participate in the research study entitled: LIVED EXPERIENCES OF PRIMARY
CAREGIVERS OF SCHOOL-AGE CHILDREN WITH PULMONARY TUBERCULOSIS

I have received adequate information regarding the nature of the study and understand what I
will request. I am aware of my right to withdraw from my study without penalty.

I hereby consent to participate in this research study.

Participant’s Signature:

Researcher:
__________________________________

48
Date:

- Letter to Conduct Study

- Informed Consent to the Respondents

- Verbal Transcription

Respondent 1

Question 1. Magandang umaga po, ako po Answer # 1

si….

APPENDIX C

VERBAL TRANSCRIPTION

Question # 1 Tell me your experiences as P1 :I try to act brave but to tell you the
truth I am scared of being infected.
primary caregiver with a school age P2 :My son had not been in a good health

49
children diagnosed with pulmonary
tuberculosis.
Question # 2 What are the challenges you
have encountered as primary caregiver to
your child diagnosed with pulmonary
tuberculosis?
Question # 3 What are the adaptive
strategies you utilized to handle the
challenges you have encountered as
condition. Now he had TB, I am worried
it would be difficult for her to find a job in
the future.
P3: No one at home has ever had TB, and
we do not understand this disease.
P4: I do not receive much education about
this pulmonary TB and I do not know how
much time is required to cure TB
P1 : I heard that this is a serious disease
and cannot be easily cured. My concern is
if this disease can be completely cured. I
am worried about this every day. I work in
the field. I am selling fruits. My child is
sick and I have to stop my job to
take care of my child”
P2: What I am worried is the child’s
disease situation. I want to provide extra
nutrition support to my child because
health is the most important. I am an
online seller. My child is suffering and I
have to give enough time caring for
him. I have another 5-year old kid at
home and I do not have time to take care
of him because of the case of my child.
P3: I heard that TB cannot be easily
cured. I am worrying about my child. I do
not know what to do. The child is not
feeling well and I am very worried
about him, but cannot say too much. I was
not able to do my household chores
routine because of my child. I have a 80-
year old elderly person to take care of and
it is difficult to care of both pulmonary TB
diagnosed child and the elderly person. I
feel short of time and energy.
P4 : I feel worried ,I always have the
feeling of fear. I give up my work just for
my child to give time in caring for her. I
wake up early daily wash clothes, cook,
feed give medication
P1 :  I love him and am proud of him
despite the condition that he is in today. I
can never abandon my child. Sometimes
nurses serve me quickly when I for
checkup and treatment of my child.
50
primary caregiver ? P2 : Looking after my child health needs
allows me to show him how much I love
him. No one is more important to me than
he is and no one can replace him. Our
neighbour always comes by to check on us
and family members appreciate what I am
doing for my child.
P3 : I had to do the best I can to take
good care of my child so that he can be
in good health again.
P4 : I have to sacrifice my time in order to
accommodate her condition. They send us
money on a monthly basis so that we can
buy things that we need.

51