A Phenomenological Study: Exploring the Experiences of People Living with

Hemophilia

Abstract

Little is known about hemophilia and how a person with hemophilia live. The
purpose of this study is to explain and understand how hemophiliacs live and try to cope
with the growing environment. The main goal of this study is to describe the personal
experiences of people with hemophilia. Specifically, to answer the questions: what is the
hardest thing about having hemophilia, how do hemophiliacs cope with everyday tasks,
and how do they socialize with other people. The research method used is phenomenology.
It involves the use of qualitative research to obtain in-depth information. The research took
place at Danao City, Cebu where the participants are located. To effectively gather data,
the researchers used triangulation through the usage of different instruments such as audio
recording, fields notes, and interview questionnaire. Moreover, the researchers used
member checking, peer checking, and data saturation. In data analysis, the researchers used
thematic analysis with 3 phases, namely, transcription, coding, and generating themes. The
findings revealed four themes relating to the experiences of hemophiliacs: (1) reactions
after diagnosed with hemophilia and how family played a big role; (2) socializing despite
having hemophilia; (3) factors that made life easier despite having hemophilia; and (4) the
daily battle against hemophilia. This themes indicate that: (1) the moment after being
diagnosed with hemophilia is something a hemophiliac could never forget, most especially
their parents; (2) it is quite hard for someone with hemophilia to socialize since such
hindrances exist; (3) factors made the life of a hemophilia patient better; and (4) gives
highlight to every day battle that hemophiliacs are facing and the obstacles that could
hinder them from achieving something they would like to achieve. The researchers findings
are: (1) the hardest thing of having hemophilia is waking up in the morning knowing a
person has an illness that he/she would carry his/her entire existence; (2) hemophiliacs live
differently than others such that they live a life full of restrictions; and (3) they have a hard
time socializing for the reason that such restrictions exist.

Keywords
Phenomenology, Hemophilia, Hemophiliac, Experiences, Cope, and Socialize

Introduction

People have different characteristics. Some are healthy and some are not. People who
are diagnosed with hemophilia are deficient in protein that is necessary for normal blood
clotting (Hemophilia Foundation Australia, 2018). According to Blanchette (2014), there
are three (3) types of hemophilia: Hemophilia Type A, Hemophilia Type B, and
Hemophilia Type C. Hemophilia Type A is a genetic disorder caused by missing or
defective Factor VIII protein. Hemophilia Type B is a genetic disorder caused by missing
or defective Factor IX clotting protein. Hemophilia Type C is a genetic disorder caused by
missing or defective Factor XI clotting protein (Reiner, 2016).

Different studies, both in the Philippines and abroad, have been conducted to further
understand hemophilia and its psychological and social effects to the community. Since
1982, the multicenter study of the epidemiology of patients with haemophilia is carried out
annually with the support of all sizes of haemophilia centers and treatment facilities. The
participating centers have made anonymized data available for patients with Haemophilia
A, B and von Willebrand’s disease (total counts for treated patients, type and severity of
the disease, HIV status and causes of death). For 2011–2012, 3331 patients were reported
with haemophilia A or B from 32 centers (Schramm & Rieger, 2013). Expectedly,
haemophilia patients were shown to be under-represented by the data from the multicenter
survey. Otherwise, the data are consistent. Base on the study conducted by Schramm and
Rieger (2013), the number of hemophiliacs continues to rise drastically. Further studies are
needed to support their claims.

A Korean team led by director of the Center for Genome Engineering Kim Jin-Soo,
Institute for Basic Science (IBS) and Professor Kim Dong-Wook at Yonsei University has
experimented with hemophilia A-derived induced pluripotent stem cells (iPSCs) and
 2

hemophiliac mice and found a way to correct this inversion and reverse the clotting factor
deficiency that causes hemophilia A. Their study has been published in Cell Stem Cell.
Data for the present study are derived from surveys and interviews from a person who are
diagnosed with hemophilia. Both the global and local celebrations of hemophilia day aim
to bring focus on this little known condition. It is an opportunity for all concerned groups
to unite for efforts to combat the burden of these diseases Kim Jin-Soo. To sum up,
hemophilia in Southeast Asia is rampant. Different occasions such as Hemophilia Day is
celebrated yearly to spread awareness and knowledge to hemophiliacs and their parents.

Local studies regarding hemophilia also yields the same results. According to a study
by HAPLOS Community Foundation (2017), receiving proper medical treatment, a person
with hemophilia also needs lifelong help to become a fully developed and empowered
individual. Asian Scientist (Aug. 4, 2015) Sufferers of hemophilia live in a perpetual state
of stress and anxiety. The World Hemophilia Federation (2016) estimates that about 10,000
Filipinos have hemophilia. With about 1 million suffering from Von Willebrand disease
and other bleeding disorder. However, at this point only around 1,200 hemophiliacs have
been identified. Hemophilia and Von Willebrand are serious and lifelong conditions that
many people are not yet aware of. It is estimated that about 75% of these sufferers receive
inadequate to no treatment at all (HAPLOS Community Foundation, 2017). Over a
thousand people in the Philippines have been confirmed to be hemophiliacs as of July 2013.

We, the researches, decided to conduct our study at Hemophilia Center of Cebu located
at Perpetual Succour Hospital, Gorordo Avenue, Cebu City 6001. We decided to conduct
our study in Cebu City because several hemophilia cases were found. Hemophilia is
prominent in Cebu City compare to other existing cities. The goal of the study is to
understand the experiences of people living with hemophilia.

Hence, the researchers would like to conduct a phenomenological study focuses on

understanding a person with hemophilia. Specifically, the study further illustrates on what
is the hardest thing of having hemophilia, how do they cope with everyday tasks, and how
do they socialize with other people. The researchers aim to understand people with
hemophilia by living as how people with hemophilia lives.

Review of Related Literature

The overall goals of this chapter were firstly to establish the significance of the
general field of study, then identify a place where a new contribution could be made. The
bulk of the chapter was on critically evaluating the different methodologies used in this
field so as to identify the appropriate approach for investigating the research question(s).
Hemophilia is a rare genetic disorder that can lead to bleeding episodes in the joints and
muscles, which can result in permanent damages. (Berube, Mouillard, Ammesse, &
Sulatan, 2016).

The study is mainly anchored on Resilience Theory. This theory explains the daily
living of people with disorders such as hemophilia and how they cope with the growing
environment. This emphasizes the ability to bounce back and recover from or adjust easily
to misfortune or change (Oladapo et al., 2015). This theory aims to disseminate information
regarding hemophilia and hemophiliacs. Specifically, this theory aims to give highlights to
the obstacles and challenges a hemophilia patient faces every day (Berube et al., 2016).

Theory on Psychosocial Challenges supports the main theory. The Hemophilia

Experiences, Results and Opportunities (HERO) initiative assessed psychological issues
reported by people with moderate to severe hemophilia and was led by multidisciplinary
international advisory board. Psychosocial factors associated with hemophilia have an
important impact on the patient’s quality of life (Cassis et al., 2015).

According to a study conducted by Baumann, the psychosocial impact of

hemophilia on activities was recently investigated in the Hemophilia Experiences, Results
and Opportunities (HERO) study (675 people with hemophilia and 561 caregivers of
children with hemophilia in 10 countries). The impact of hemophilia B may not be
accurately reflected in the HERO results, as ~75% of respondents described issues
affecting males with hemophilia A. To address the needs of this population, the Bridging
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Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) was

developed as a pilot study in the United States in collaboration with the hemophilia
community. The analysis reported here assessed engagement in recreational activities and
changes to treatment regimens around activities as reported by 299 adults with hemophilia
B and 150 caregivers of children with hemophilia B. Nearly all adults with hemophilia B
(98%) experienced a negative impact on their participation in recreational activities due to
hemophilia‐related issues, and most caregivers (90%) reported that hemophilia B had a
negative impact on their child's engagement in recreational activities. One of the main
reasons identified for discontinuing past activities was the risk of bruising or bleeding
(adults/children with hemophilia B, 49%/41%). In particular, adults with hemophilia B
reported a history of activity‐related bleeding, and most adults decreased their participation
in high‐risk activities as they aged. Substantial percentages of adults and children with
hemophilia B (including mild/moderate severity) altered their treatment regimens to
accommodate planned activities. These findings may help inform guidelines for
individualizing treatment regimens around participation in recreational activities based on
hemophilia severity, baseline factor level, and activity risk and intensity (White & Aster,
2014).

Another theory supports the main theory. The theory of planned behavior, physical
activity, and medical treatment adherence (Berube et al., 2017). The results indicate that
past behaviors, attitudes, and subjective norms explained a large proportion of the intention
to engage in future non-recommended physical activity. This study supports the need to
investigate motivational factors underlying behaviors in larger scale studies and identifies
targets for future interventions.

Bleeding manifestations in Hemophilia or sites of bleeding where severity is high:

Central Nervous System, Gastrointestinal, Neck/Throat, Joints, Muscles, Hematuria,
Mouth, Nose and Gums. The family of a hemophilia patient is also affected. Since
hemophilia is a lifelong condition, requires expensive treatment, and can be lifethreatening,
it significantly affects many aspects of family life. It is, therefore, important that parents,
spouses, and other family members are educated, supportive, and active participants in all
aspects of the patient’s care (Schwarz et al., 2013).

According to a study, most adults (98%) and children (90%) with hemophilia B
reported some degree of negative impact of hemophilia on engagement in recreational
activities (Figure 1). Ninety‐three percent of adults with moderate hemophilia experienced
a large or moderate impact on activities compared with those with mild (64%) or severe
(78%) hemophilia B. A higher percentage of adults with hemophilia B currently receiving
routine treatments (91%) reported a large or moderate impact on recreational activities
compared with those receiving on‐demand treatment of bleeds only (55%) or on‐demand
plus additional infusions (58%). Perhaps this is a consequence of current reported treatment
reflecting activity‐related adjustments, such as adding extra doses of factor or changing
when factor is administered, or it may reflect how underlying joint involvement can affect
activity participation (types of activity, intensity, and duration) (Baumann, 2017).

Living with hemophilia might affect the psychological and physical state of a
person. Different themes of the study have emerged that supports the research. These
themes correlate the main theory, its supporting theories and the main goal of the study.
These themes aim to explain further complications of living a life with hemophilia.

Long-Term Complications

Chronic hemarthroses are one of the most common long-term complications of

Hemophilia. Intra-articular bleeding may resolve on its own or with treatment in an acute
case. However, many patients will experience recurrent bleeding and develop single or
multiple target joints that are often painful and restrict their daily activity.13 Common sites
are the knee, elbow, and ankle. Over time, chronic synovitis and chronic hemarthroses can
result in degenerative joint disease, osteoarthritis, and osteophyte formation; surgery may
be required if other more conservative treatment options are not successful. Clinical
deformity of the joints in chronic hemophilic arthropathy can be difficult to treat. Because
of the chronic synovitis and accumulation of fluid in the joint space, the joint can
hypertrophy while the attached muscles atrophy. This severely restricts range of motion
 4

and may lead to the development of contractures. The large joints are the most commonly
affected; arthropathy of the elbow can be especially problematic. Destruction of the elbow
joint can result in ulnar nerve compression and neurologic complications. Severe
limitations in range of motion, chronic pain, and crippling disability are the ultimate
outcomes for many patients who experience chronic hemophilic arthropathy (Bockenstedt,
2017).

Inhibitors are proteins in blood that inactivate infused clotting factor. This stops the
factor product from working, so bleeding episodes continue (Lai, Chu, Liao, & Yang,
2018). The Hemophilia Inhibitor Research Study began in 2006 and ended patient data
collection in 2016. The study confirmed that certain hemophilia A and hemophilia B gene
mutations are linked to inhibitor development. They were able to develop the Bethesda
Test, an inhibitor test method that can successfully test people for inhibitors while they
receive clotting factor treatment, even treatment product usage the day of testing (Chai-
Adisaksopha et al., 2017). With traditional inhibitor tests, patients had to stop using
treatment products for a few days before the test could accurately measure if an inhibitor
is present. This new test method is now used as the centralized inhibitor testing. They
demonstrated the accuracy of several inhibitor test methods that can be used to confirm the
test results of the standard NBA test method. They have also demonstrated and made clear
that all persons with hemophilia is at risk for inhibitor development regardless of the age,
disease, severity, or the number of times treatment products was used (Rivera, 2014).

Motivational Communication for Hemophiliacs

Autonomy-support should not be confused with permissiveness or neglect.

Autonomy supportive environments typically include a clear structure for children in order
to give them opportunities for self-achievement, all the while preventing them from
engaging in risky behaviors (Franchini & Mannucci, 2013). Existing interventions have
shown that professionals and parents can be trained to use an autonomy-supportive
communication approach where the child is helped in meeting his or her innate
psychological needs. This may be achieved by encouraging personal choices, independent
problem-solving, taking initiative, and by participation in shared decision-making. In such
environments, the child’s point of view is acknowledged as well as his/her ideas and
feelings (Maffet, 2017). However, this can represent a challenge with a child with
hemophilia as the need to limit health risks strongly encourages caregivers to be more
controlling than autonomy-supportive, thus emphasizing obedience or compliance.
Unfortunately, with this latter type of approach, the child will generally be less adherent to
his treatment or recommended self-care behaviors (Rivera et al, 2014).

Understanding Hemophilia

In families with a known history of hemophilia, it is sometimes easier for parents

to deal with the diagnosis. But there can also be challenges, such as generational
differences and new developments in the understanding of hemophilia and its management
(Schramm & Rieger, 2013). Past generation of children of children with hemophilia who
did not have access to factor theraphy were discouraged or prevented from taking part in
sports or strenuous activities, and were often overprotected and somewhat isolated (Lai,
2018). Medical advances such as prophylaxis theraphy and availability of factor
concentrates have allowed people with hemophilia to be more active and live more full and
healthy lives (Dutriel, 2014).

Children with hemophilia don’t want to be seen as different and want to be treated
as normal (Gouw, 2013). At the same time, they need to understand that sometimes they
will be patients, such as when there is a bleed and need treatment or rest to allow injuries
to heal. It is important that as patients, children continue to learn about their hemophilia
and their bodies and come to accept that they have a chronic life condition.

According to Hartmann (2016), parents may sometimes feel guilt at having passed
on hemophilia to their children; disappointment and anger that dreams for the child may
not be fulfilled; anxiety over access to treatment or cost of treatment; concerned about
venous access for the delivery of factor replacement; anxiety about family disruption and
sibling rivalry over the attention spent on the child with hemophilia; and fears about
 5

treatment and care. It is important to remember, however, that these feelings are likely
accompanied by positive feelings such as the joy of having a new baby and a unique
experience of being part of that child’s emotional and physical development.

It is important to watch for signs of difficult adjustment, such as a parent rejecting

or distancing one’s self from the child blaming the other (female) parent, shame or intense
conflict in family. With time and support from healthcare professionals, there can be
acceptance (Rivera, Peters, & Bitoni, 2014). It is also important for healthcare
professionals to look out for persistent anxiety or signs of depression that may affect day
to day life and family relationship, and provide appropriate psychosocial support (Gillham,
et Al, 2016).

Numerous challenges confront adult hemophilia patients with or without inhibitors,

including difficulty in controlling bleeding episodes, deterioration of joints, arthritic pain,
physical disability, emotional turmoil, and social issues (Konkle, 2017). High-intensity
treatment regimens often used in the treatment of patients with inhibitors also impose
significant scheduling, economic, and emotional demands on patients and their families or
primary caregivers. A comprehensive multidisciplinary assessment of the physical,
emotional, and social status of adult hemophilia patients with inhibitors is essential for the
development of treatment strategies that can be individualized to address the complex
needs of these patients (J Blood Med, 2014).

Psychosocial factors associated with hemophilia have an important impact on

patients’ quality of life. The transition from childhood to adulthood, with increased
independence in living situations and financial responsibilities, may be particularly
challenging for young adult patients with hemophilia (YA‐PWH) 2. After cultivating long‐
standing relationships and shared experiences with staff at pediatric hemophilia treatment
centers (HTCs), the transition to an adult HTC may be difficult. Additionally, living alone
or moving to a college/university may be associated with reduced treatment adherence,
risky activities (acting out), and attempts to hide the disease from friends, partners,
classmates, and coworkers 3, 4. In the United States (US), YA‐PWH must secure
independent health insurance by the age of 26 to continue to receive treatment 5, and must
therefore be declared “disabled” or find employment and decide how to communicate their
health status to employers (Witkop, 2015).

The diagnosis and management of patients with severe hemophilia are complex.
Preventive treatment (prophylaxis) is required to avoid bleeding episodes and related
complications and use of replacement therapy with coagulation factors is needed during
acute bleeding episodes (Scharff, 2017). Optimal care of patients with hemophilia requires
a comprehensive approach that is coordinated by a multidisciplinary team of specialists
and is provided at a dedicated hemophilia treatment center. Despite advances in the
management of hemophilia, challenges remain, including the shortage of physicians
trained in the management of hemostasis and thrombosis and limited access to specialized
centers that provide comprehensive care (Bauer, 2015).

The aim of treating a child with hemophilia should be to ensure that both the family
and the child perceive themselves as healthy. The development of inhibitors is currently
the most serious complication of treatment. Initiating prophylaxis at an early age is
considered to be the optimal form of therapy. Children with severe hemophilia should be
examined once or twice a year by a pediatrician at a comprehensive hemophilia care center.
The child is not the only person affected by the disease; there is also a profound
psychosocial effect on the family. The pediatric hemophilia team must work together with
families to support and promote normal behavior and encourage the parents to not be
overprotective. Parents should know that a child with hemophilia who is on adequate
prophylaxis can enjoy virtually normal free‐time activities. This chapter considers various
aspects of the medical and psychosocial care of children with hemophilia. (Ljung, 2014)
Most adults (80%) and children (65%) were receiving some form of routine infusions as
infrequently as twice a month up to several times per week to prevent bleeding (Baumann,
2017). In this chapter, the researchers reviewed relevant literature: Physical challenges,
psychosocial challenges, long-term complications, and understanding hemophilia. The
literature review sets the stage for later analysis as the themes that emerged through the
lived experiences of the participants are vetted through this literary lens. While the research
 6

presented in this Chapter creates a peripheral foundation of knowledge surrounding the

phenomenon it also demonstrates the existing void in prior empirical investigation relating
to the interactivity of hemophiliacs and the people around. The literature reviewed in this
chapter supports the need for exploring how hemophiliacs experience and simply
understand hemophilia.

The researchers noticed the different themes that emerged. Almost all, if not,
experiences of hemophiliacs (a person with hemophilia) under physical and psychosocial
challenges are negatives. They experience being different more than others. In some aspect,
such as sports, most hemophiliacs are not allowed to participate (Maffet & Roton, 2017).
Published data show that team physicians are not comfortable either treating athletes with
bleeding disorders or allowing them to participate in contact sports (Schopohl, 2018).
Different studies were conducted in the span of 2013 - 2018 about the experiences of
hemophiliacs. Different studies yield the same results. However, the studies published
within 2013 - 2018 did not really specify as to what physical and psychosocial challenges
were faced by the hemophiliacs in daily life, school, and at home.

Methodology

This study was founded on a qualitative approach focused primarily on the

experience and understandings within a hemophiliac’s world. Qualitative research analyzes
data from direct fieldwork observations, in-depth, open-ended interviews, and written
documents. Qualitative researchers engage in naturalistic inquiry, studying real-world
stings inductively to generate rich narrative descriptions and construct case studies.
Inductive analysis across case yields patterns and themes, the fruit of qualitative research
(Patton, 2005). The researcher builds a complex, holistic picture, analyzes words, reports
detailed views of informants, and conducts the study in a natural setting”. The emphasis
was on how hemophiliacs construct meaning and knowledge through interactions within
the social context which appropriately aligned with this research’s interest in researching
how hemophiliacs cope with everyday tasks and how they try to live a normal life.

Research Design

A research design was the set of methods and procedures used in collecting and
analyzing measures of the variables specified in the research problem (Creswell, 2014).
They are infinitely many reasons why research is important. One of which was it was a
tool for building knowledge and for facilitating learning. Research is required not just for
students and academics, but for all professionals. It is also important for budding and
veteran writers, both offline and online (Zarah, 2018). Another importance of research is
that it is a way to prove lies and support truths. According to Zarah (2018), scientists also
deal with research to test the validity and reliability of their claims or those of other
scientists'. Their integrity and competence depend on the quality - and not just quantity -
of their research.

In this research, the research design used was qualitative research. Qualitative
research is in-depth research using a range of techniques, which aims to understand why
people think, feel, react and behave in the way that they do (Talbot, 2015). Qualitative
research is important because it promotes a full understanding of human behavior or
personality traits in their natural setting (Talastas, 2016). Qualitative research is the
essential guide to understanding, designing, conducting and presenting a qualitative
research study (Merriam & Tisdell, 2015).

In this qualitative study, the researchers specifically used phenomenological study.

According to Giorgi (2012), phenomenology is a qualitative research method that is used
to describe how human beings experience a certain phenomenon. Phenomenology allows
the researcher to delve into the perceptions, perspectives, understandings, and feelings of
those people who have actually experienced or lived the phenomenon or situation of
interest. Phenomenological study aims at gaining a deeper understanding of the nature or
meaning of everyday experiences (Vagle, 2018).

The phenomenological approach was fit to our study considering that the study was
mainly anchored towards understanding people with hemophilia. By definition,
 7

phenomenology is used to understand experiences. It can help explain the day to day
experience of a person with hemophilia and how they cope with the daily challenges that
may arise, thus this approach was well-suited to our study.

Research Setting

The research study took place at Danao City, Cebu, but the participants are a
member of an organization in Perpetual Succour Hospital in Cebu City. The hospital
specialize cases of hemophilia since it has a center for hemophilia patients, the Hemophilia
Association of the Philippines Inc. – Cebu Chapter. In the place, infusions for minor
bleedings of some hemophiliacs take place wherein numerous number of patients are
catered. The setting suited the study itself since the study focuses on the lives of
hemophiliacs and cases of hemophilia are evident and rampant in the said setting. The
problem of the setting is finding the right participant. Within Perpetual Succour Hosipital,
only few people are willing to be interviewed. In conclusion, the setting chosen (Danao
City, Cebu, where the participants are located) was fit to our study because it is the primary
support group of people with hemophilia in Cebu.

Research Participants

The selection of participants for this study was based on purposive sampling.
Purposive sampling is a non-probability sample that is selected based on characteristics of
a population and the objective of the study (Cole, 2018). Purposive sampling is fit since
our study is qualitative. By definition, purposive sampling is applicable to both qualitative
and quantitative studies although it is most frequently used in qualitative studies.

The purpose of this study was to investigate: (1) what is the hardest thing of having
hemophilia, (2) how do they cope with everyday tasks, (3) how they socialize with other
people. The overall focus of this study is to understand the life of a person with hemophilia.
Although the range of interview participant responses is intended to allow for as many as
possible voices to be represented in this research study, not every interview participant
discuss all six (6) categories used in the interview protocol (accesibility, interaction,
presence, satisfaction, structure, and support).

The 6 participants with hemophilia who consented to be interviewed was profiled

individually.

Table 1. Study Sample Overview

Participant Age Citizenship Gender Academic Hemophila

Status Type

1 16 Filipino Male Junior High A

School
2 20 Filipino Male Senior high A
School
3 18 Filipino Male Senior High A
School
4 24 Filipino Male Junior High B
School
5 24 Filipino Male Junior High A
School
6 42 Filipino Female Graduate C

Participant 1
Participant one is a 16-year old filipino boy, currently at his junior highschool year
with a Hemophilia A. Coming from an average family with a wavering financial stability,
there are times that he would not be able to have infusions when minor bleedings occur
however, he have also tried living a life of a normal teenager when he was able to play
basketball because he was being infused with factor 8 for consecutive 5 days. He describes
his sickness as a wall that hinders him from doing things that teenage boys usually do.
There are numerous things he’d like to do but the sickness makes him incapable of doing
 8

so unless aided with factor 8 every day but the cost needed is approximately 100,000 pesos
a day and that amount is not that easy to earn. Sometimes, he feels ashamed of how his
parents treat him especially at school since he is always sent and fetched. In terms of having
friends, he tends to look for the ones who can accept him and those who are considerate
about his condition. He said “I am more than just my sickness” and that he somehow
wished that one day he’ll wake up reading a new that hemophilia has a cure already.

Participant 2
Participant 2 is a 20 year-old filipino male with Hemophiilia A. He had stopped
studying when he turned senior high. He is living together with his family. His mother is a
janitress, striving hard just to alleviate the condition of her son. Currently, he is having
billiards for fun just to forget about his sickness and how his interest such as playing
basketball is being hindered by the sickness he has. Life with hemophilia but without
money is like a toy without a battery. Without enough money to buy factors is close to
being lifeless. Poverty is the first enemy of hemophilia. It is said that this sickness is for
“Royal-blood” but for those who don’t have money to aid the sickness, the hardships
double up.

Participant 3
Participant 3 is an 18-year old male, a senior high school and is currently in his
senior high school level. He is living a life like an egg, his parents prohibit him from going
out like normal teenagers of his age do but then he understands why does his parents
prohibit him. He is provided by everything that could eat away his boredom at home and
he is being fetched and sent at school. He said that with precautions and care, living with
hemophilia would be possible but since every waking moment of one’s life is a risk, that’s
why there’s a need for factors to sustain a hemophilia patient’s life and make them able to
live a life they’d desire.

Participant 4
Participant 4 is a 24-year old boy with hemophilia B. He stopped studying and only
finished junior high school due to his sickness. He stopped because he was suffering from
bleeding in his hips which made walking impossible. Without the factors he is very
vulnerable and if not aided with factors, sooner his ability of walking will permanently get
lost. He is very close to his mother since his mother have become his temporary foot. His
mother has always been supportive to him and that is one thing he is grateful about. His
father has left them for another family but then his mother has played the role of being a
father and a mother as well. He tried working to earn a small amount of money to help his
mother but then his sickness hinders him from working yet he never loses his hopes.

Participant 5
Participant 5 is a 24-year old male, he stopped studying when he turned 18 and he
is living with Hemophilia A. He and his family never expected him to reach this age since
when he was 13 he went through an accident with motorcycle. The recovery stage was a
challenge since it took him more than a year to heal. That moment, was very dependent to
the daily dose of factors. Though he has survived that operation but the precautions have
doubled up. He said, “I admit it, I wished I never had hemophilia.” I envy people my age
who enjoys the life of being a college student where they could travel places on their own
or go out of town to freshen up with friends because he is sent and fetched by his father at
school. “Life with hemophilia is hard”, he said and that living life to its fullest is
impossible.

Participant 6
Participant 6 is a mother of a beautiful young girl. Having a baby is impossible for
her so she and her husband undergone artificial insemination in another woman’s body in
order to have a baby of their own. She is currently 42 year-old and she is suffering from a
rare type of hemophilia that usually occurs to women, the Hemophilia C. “Being financially
stable is very important when you are a hemophiliac, especially when you are a female
since you bleed every month.” She said. Every month is a huge challenge she faces, hospital
has been her second home and needles have become her friends.
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Instruments

The tools and instruments used in this research study are interview questionnaire,
field notes, and audio recording. Moreover, the researchers used triangulation method to
assure trustworthiness of the collected data.

According to Carter (2014), triangulation refers to the use of multiple methods or

data sources in qualitative research to develop a comprehensive understanding of
phenomena. Triangulation is very essential in conducting a study in order to validate the
trustworthiness and validity of the data gathered. The purpose of the triangulation is to
increase the credibility of the results and information gathered (Cohen & Manion, 2000).

The first tool used was research questionnaire. According to Mellenbergh (2008),
a research questionnaire is a research instrument consisting of a series of quesions for the
purpose of gathering information from respondents. An interview questionnaire is essential
in conducting a study because it serves as the bridge to fully understand a person. The
research questionnaire is semi-structured. Semi-structured is a mix of unstructured and
structured questionnaire. Some of the questions and their sequence are determined in
advance, while others evolved as the interview proceeds (Sabe, 2015). Moreover, the
research questionnaire was validated by an expert in research and a mentor expert in the
field of study.

The second tool used was field notes. Field notes refers to qualitative notes recorded
by scientists or researchers in the course of field research during or after their observation
of a specific phenomenon (Canfield, 2011). Field notes acts as a reminder so that no detail
in the interview will be neglected.

The last tool used in the study was audio recording. With the use of audio
recordings, the researchers can validate the trustworthiness and the legitimacy of the
gathered data. The audio recording will serve as a proof to that all the data in the study is
true and legit.

In general, the use of different tools to validate a study is essential in conducting a

reliable research. It will not only validate the legitimacy of the data, but it will also build
trust between the researchers and the reader.

Data Collection

Data collection is the process of gathering and measuring information on variables

of interest, in an established systematic fashion that enables one to answer stated research
questions, test hypotheses, and evaluate outcomes. The data collection component of
research is common to all fields of study including physical and social sciences,
humanities, business, etc. While methods vary by discipline, the emphasis on ensuring
accurate and honest collection remains the same (Knautterud et. al., 2001).

In this study, the researchers aim to achieve the main purpose of this study which
is to understand the lived experiences of people with hemophilia. Specifically, on how they
cope with the growing world.

Data collection for this project occurred through interviews, telephone call, and
online chat designed to explore the lived experiences of people with hemophilia.
Participants were asked to attend an interview scheduled for approximately 10-30 minutes.
Interviewing is a particularly effective technique for collecting data about the lived
experience of participants (Van den Berg, 2005). Interviews and telephone call were
conducted with a semi-structured approach reflecting on the framework presented in the
literature. Although the researchers had prepared open-ended interview questions with
prompts to guide the experience, exact wording and order remained flexible to best
navigate the interactive experience with each respondent (Merriam, 1998). The researchers
utilized the use of online communication through Facebook to interview a participant that
cannot answer the the interview questions right away. The researchers used this technique
to give them extra time to think and do their priorities.
 10

The participants in this study was known due to the fact that one of the researchers’
sibling is also a hemophiliac. Furthermore, her sibling was part of an organization of
hemophiliacs in Cebu. Additionally, a research interview consent form was used to show
that a person or participants agrees to something that will happen. Consent form is a legal
procedure used to ensure that a person is aware of what they are agreeing to do and is also
aware of any risks or costs that may exist (Roundy 2018). The participants were met at
Danao, Cebu. From the collected data, further analysis were done to extract profound
meanings from the participants and to proceed additional conclusions. With this, all data
gathered is guaranteed safe and confidential.

Data Analysis

According to Pyzdek (2003), data analysis is a process of inspecting, cleansing,

transforming, and modeling data with the goal of discovering useful information, informing
conclusions, and supporting decision-making. In this phenomenological study, thematic
analysis was used by the researchers. According to Braun & Clarke (2016), thematic
analysis is a flexible data analysis plan that qualitative researchers use to generate themes
from interview data. This approach is flexible in that there is no specific research design
associated with thematic analysis. It can also be utilized for case studies, phenomenology,
generic qualitative, and narrative inquiry to name a few.

The first step in thematic analysis is transcription. According to Daly and Gliksman
(2000), after completing data collection, the researcher needs to begin transcribing the data
into written form. Criteria for transcription of data must be established before the
transcription phase is initiated to ensure that dependability is high. Inconsistencies in
transcription can produce biases in data analysis that will be difficult to identify later in the
analysis process (Saldana, 2009). Transcription of data is essential in a study analysis
because this is the first and major step in data analysis. This is the part where the researchers
transcribe the data gathered into written form for better and easier data analysis.
Transcription is used to be able to fully understand what the participant said. We, the
researchers, applied transcription through encoding the audio recordings of the participant.

The second phase in thematic analysis is coding. In qualitative research, coding is

“how you define what the data you are analyzing are about” (Gibbs, 2007). According to
CESSDA Training Working Group (2018), coding is a process of identifying a passage in
the text or other data items, searching and identifying concepts and finding relations
between them. Therefore, coding is not just labeling; it is linking from the data to the idea
and back to other data. Coding is essential in data analysis because this is the part where
the researchers defines the data. In coding, researchers interpreted every written data they
have transcribed and find meaning. Afterwards, interpreted data was labeled based on their
meaning and according to their interpretation. They are furthermore categorized into a
more in-depth categorization. Then the codes of the study were analyzed in accordance to
their themes.

The third phase is the construction of themes. Relatively, the researcher categorized
all the data all the constructed or interpreted codes. Themes are features of participants’
accounts characterization particular perceptions and/or experiences that the researcher sees
as relevant to the research question (University of Huddersfield, 2019). Moreover, there
are different things that must be put into consideration when generating themes:

First is origination. “Using participants as a point of origination means that the

participants can identify categories, as opposed to a researcher identifying categories;
Using the investigator as a point of origination, categories are developed based on the
personal interests, views, or intellectual constructions of the researcher; In the
interpretative approach, as a distinct point of origination, interpretative categories have a
more general variety in that they are not directly related to the phenomena under
investigation, but are more related to the method of analysis” (Yin, 2016).

The second thing that must be put into considerations is verification. “It is used to
support the creation and application of categories in a given study; It is consisted of sources
of external (utilizing a panel of experts outside of the study to verify and substantiate
categories), rational (relying on relies on logic and reasoning), referential (utilizing existing
 11

research findings or theoretical arguments to justify categories), empirical (relying on

internal data and without reference to other studies to examine the coverage and
distinctiveness reflected by categories), technical (borrowing procedures, or at least
language, from the quantitative orientation), and participative (providing participants the
opportunity to review and possibly modify categories)” (Schreier, 2012).

Last but not the least is nomination. “It concerns with naming categories. The labels
may be identical to those used under the origination component. Participants can be a
source of labelling. Category names can be derived from existing theories and body of
literature. Labels can be derived from interpretative orientation” (Yin, 2016).

To make sure that the data are not biased, the researchers made sure that there was
no gap in the data interpretation. All the data are interpreted and analyzed deductively and
inductively to obtain a firm and strong interpretation. Furthermore, the researchers used
peer checking. In which, the researchers asks another researcher to analyze the data to see
if both the researchers come up with the same interpretation. The researchers also used
member checking. In which, the researchers asked the participants if the interpretation of
data is in accordance to the data collected.

Ethical Consideration

According to Mazur (2007), ethical considerations in research are critical. Ethics

are the norms or standards for conduct that distinguish between right and wrong. They help
to determine the difference between acceptable and unacceptable behaviors. To secure that
the participants’ credentials are protected, the researchers ensure that all the private
information are kept and not publicized. Additionally, before conducting the interview, the
researchers made a background research to the participants. As to their social status, age,
gender, and relationship status. This is conducted to ensure that the questions asked are
sensitive to the participants.

Researchers Reflexivity

To make sure that the result is objective, the researchers used peer checking. In
which, the researchers asked another researcher to interpret the data to see if both come up
with the same interpretation. Furthermore, the researchers also used data saturation.
According to Faulkner and Trotter (2017), data saturation refers to the point in the research
process when no new information is discovered in data analysis, and this redundancy
signals to researchers that data collection may cease. Data triangulation is also used to
obtain an objective and unbiased interpretation with firm and strong proof. Lastly, the
researchers used member checking. In which the researchers asked the participants, once
again, if the interpretation of data is accurate and true.

Results and Discussions

The qualitative study involved six (6) hemophilia patients, suffering from 3 types
of hemophilia, Hemophilia A, Hemophilia B, and Hemophilia C. The researchers have also
used the triangulation method which they have asked for observation of the participant’s
relatives. In this study, the participants resided in Danao City, Cebu. Their age range are
16 – 42 years old.

This study emerges the four (4) main themes pertaing to the experiences of people
with hemophilia. These themes namely: (1) Reactions after diagnosed with hemophilia and
how the family played a big role; (2) Socializing despite of having Hemophilia; (3) Factors
that made life easier despite of Hemophilia; and (4) Every day battle facing Hemophilia.
The themes are based on the interview transcripts reviewed for this study.

Reactions after diagnosed with Hemophilia and how the family played a big role

The moment after being diagnosted with hemophilia is something a hemophiliac

could never forget, most especially their parents. This theme pertains to the reaction of the
family of the patient the moment they were diagnosed with hemophilia and how they have
dealt with it. As a primary family to the patient, their reactions play a big role on how the
 12

patient coped and accepted their sickness. According to Ljung (2014), the family’s role is
very vital to the acceptance of an individual. They must feel the support of their family as
they overcome their sickness. After knowing they have hemophilia, they showed how
downful and shocking it was for them when they were diagnosed. It can be seen that they
have questioned themselves why do they have such disorder. Which they can do nothing
about so they choose to accept it, otherwise coping would become impossible.

Participant 1, 5 and 6 states that:

“Nasakitan kay nganong ako man, pero dawat naman nako run kay wa man koy
mabuhat.”(I was hurt and asked myself, “why me?” but, today I have accepted it already
because I can do nothing about it.)

“It is hard. The hardest thing would be the bleeding episodes.”

“Kuyawan sad, pero kahibaw naman jud ko nga naa kay akong igsuon na laki naa sad.
Bag o lang sad siya namatay.”( I was nervous about it but, I was already expecting it since
I had a brother who was also suffering from hemophilia, it was just recent when he died.)

This statement told by the participant highlighted their reactions and how
sometimes, having such disorder is predictable. Being a hemophilia is not just like a walk
at the park. Bleeding episodes may occur that could be a huge threat for the lives of people
with hemophilia. Bleedings are the main reason why hemophilia patients are vulnerable
and that they are living a life full of risk. Hemophilia is a hereditary sickness, thus when
someone in a family has this there would be a big possibility of having such. This statement
provided by the participant reflects how acceptance is very important for an individual with
hemophilia. Acceptance of themselves and acceptance from the family. It is very important
that a hemophiliac could feel acceptance from the people around them most especially the
people who are closely binded to them and the feeling of being a burden would obliterate.

Participant 6 states that:

“Sauna I used to think of myself as a burden to my parents pero they never failed to remind
me that I am not.”(Before I used to think of myself as burden to my parents but they never
failed to remind me that I am not.)

They think of themselves as a burden. One of the hardest obstacle to pass through
prior to acceptance about being diagnosed is the intellectual well-being of a patient. It can
never be taken away from their minds that with them having such sickness, they would be
able to think of themselves as a burder to their families and to the people they are
engaging with every single day. Furthermore, they consider themselves as a heavy load to
their family and to others, when not aided by their primary guardians it will become hard
for them to realize their importance. It is very essential for the people who are close to the
patient to remind them that they are not a burden and that they are not just the sickness
they think they are. They try to be brave and strong for their family.

Participant 1 and 5 state that:

“Parents yes, oo. Fight jud ko mahimong brave kung naay mahitabo. Ako sila ipray
pud.”(Parents yes. I fight and be brave when things happen. I pray for them.)

“Ohhh, kay naa koy pamilya nga dawat ko ba. Bisan lisod mi.”(Yes, because I have a
family who accepts me despite of our hardships.)

It is very evident that the parents are the people who are responsible in making a
hemophilia patient feel that he/she is being accepted. As a hemophiliac, it is also their
duty to make their parents feel that they are doing their best to be brave and strong.
Families stick with each other through ups and downs. Families are the ones who should
never leave you when you are suffering. Families are the ones who show you the light in
times of darkness. A patient must feel the acceptance no matter what the hardships are
because families are the people who will always stay with you.
 13

Participant 6 states that:

“Yes, very supportive ones and I could really thank them by saying thank you. Never
ending thank yous labi na ma hospital na pud ko unya sila ra biya jud ang naa.”

In this statement it is seen that the support of the family is one of the things that
build a strong foundation in a hemophiliac’s psychological thinking. it is must and fitting
to thank the people who helps them build such strong foundation. When one has a
supportive family, it is seen and evident in the way a patient thinks and how he/she shows
gratitude to the ones who never left his/her side.

Socializing Despite Having Hemophilia

This theme tacles about the social life of a hemophilia patient. It is quite hard for
someone with hemophilia to socialize since such hindrances exist. It is very hard to go
places and socialize like what most normal people do because risk are always there. The
percentage of harm and risk for hemophiliacs are much higher than the percentage for
normal people since hemophiliacs are considered to be sensitive. This theme highlights the
social health of a hemophilia patient and how they make friends despite their condition.
According to Dutreil (2014), socialization brings a positive impact to the life of a
hemophilia patient.

Participant 1 and 3 states that:

“Oo, mas hayahay sila. Kay ang... samok kay na nga sakit sad... kung mag... ang
hemophilia murag akong pinaka dakong kaaway.” (Yes, they have a much better life.
Because this sickness is very disturbing and painful. If...Hemophilia have become my
greatest enemy.)

“Oh, ila man siyang palanggaon. Salig man sad ko anang iyang mga amigo dong. Oo
kahibaw nya pinangga rajud nila kay ilang dad on kung mag laag sila nya mamista sila
mga nindot sad na iyang mga barkda kay nakapili sad siyag in ana ba” (Yes, they take
care of of him. I trust his friends. Yes they know and they really take good care of him and
they always bring him if they would go somewhere like a fiesta, he really have great friends
and I.m happy he have chosen them.)

In this statement it is seen that people with hemophilia also needs to socalize with
other people and that making friends is also a thing for them. Socialization is very important
for an individual because this can help in boosting their psychological health. Socialization
could also give positive imoacts especially to thos who are suffering from sickness such as
Hemophilia.

Participant 1 states that:

“Di nako iingon dayun, kay basin unsa ilang isulti ba. Ayha rag mangutana na sila.”(I do
not tell them about it directly because i am scared of what they will be saying. I only tell
them when they ask)

The situation of having hemophilia is not as easy as we think. Therefore, we must

be understanding of the patients’ sides and how they feel with their sickness. The feeling
of being ashamed of one’s sickness will sometiems appear knowing that when telling
people about your sickness makes them treat you some way. It is seen that patients
somehow like to live a life like how normal people does.

Participant 3 states that:

“Oo muana jud siya pero okay raman kay di mansad siya makaingon nga di nako palakaw
lakawon mo sugot raman ko ana lang nga pag amping pirmi.”(Yes he tells me but he’s
okay with it because I don’t totally restrict him from going somewhere I allow him but he
must be really careful.)
 14

It is understandable for a parent of a hemophilia patient to be very mindful of their

child’s safety but, they must also take note that their child also needs to explore and
socialize with other people. They must take consideration of the life of their child. Without
socializing and exploring other things is like not living at all. Hemophiliacs must have a
time for socializing but this must have limitations of course considering that they have such
disorder.

Participant 4 states that:

“Oo kahibaw. Wala ra dawat ra careful kay sila nako ila gani kong bantayan, hinay gyud
sila diri nako ba.”(Yes, they know. They accept it and they are careful to me, they even
look after me. They are very gentle to me.)

As for the friends of hemophiliacs, they must be very precautious of their

hemophilia patient friend. It is their duty to look after their friend if they are not under the
vision of their friend’s parents. They must be aware of the dos and don’ts when around the
patient and how to take care of him/her. Socialization does not only take part of the patient
but so are his/her friends. They must be understanding in terms of the patients limit and
they are to be responsible on how they make the patient feel valued despite of his/her
sickness and is seen more than just a hemophiliacs but as a human as they are.

Participant 1 states that:

“Yes, dili...aw usahay mauwaw ko slight kay dako na biya ko.”(Yes, no... Maybe sometimes
I feel ashamed because I am already old enough.)

In the adolescence stage, being ashamed for being helped through because of one’s
sickness is considered as one of the obstacles encountered during socializing. It is also
considered as a bump in the psychological and psychosocial health of a person suffering
from hemophilia since it can hinder the socializing that may occur which could lead to a
unhealthy psychological health and psychosocial health of a hemophilia patient. That is
why making them understand the situation could help.

Participant 6 states that:

“Yes, of course but I realized that di man jud na siya malikayan so okay ra man nako.”(Yes,
of course, but I realized that it is something I can do nothing about.)

For some, being fetched at school is something they are embarassed with but, with
the people who makes them understand they slowly have realized why there is a need for
them to be fetched at school. Hemophiliacs’ side must be understood, they may be only
thinking about what do people have to say after being seen that they are sent and fetched
at school but the people who are close to the patient must aid the need of making him/her
understand about the situation and the safety being actioned upon on.

Participant 2 states that:

“Di man kay sa bilyaran pa intrahon man na siya. Ohh…hmm… pa intrahon na siya sa
bilyaran.”(No, because at the billiards place, his friends allow him to join. Yes...hm... his
friends make him join.)

There are those things that can make a hemophiliac socialize and enjoy without
being harm but of course with limitations and awareness. Things that can serve as a leisure
time as long as it is not a contact sports is okay as long as it is setted with a limitation
because everything that is too much is harmful for a hemophilia patient.

Participant 6 states that:

“Kanang manglaag then ako naa koy chaperone”(When we go somewhere with my friends,
I have a chaperone)
 15

This statement highlights the care of a parent for a child with hemophilia. It is seen
that they want to make their child feel free but could not do so they prefer to make their
child go with a chaperone just to ease their scaredness of the things that might happen
without supervision. For the patients’ side, it is quite disturbing but somehow they would
realize that their guardians are only concern about them. In terms of meeting new friends
hemophiliacs tend to not tell their newly met friends right away about their condition.

Participant 4 states that:

“Ahh dili. Kay muabot man ang panahon nga mangutana ra sila nya mo sulti ko.”(Ahh no.
Time will come that they would ask)

In this statement, we can see that the participant is not that direct in telling his/her
new friends about his/her condition. In the psychological aspect, the participant is
contemplating wether to talk about his/her condition or not because the hemophiliac is
scared of the outcome and how will the people act about it and how will the relationship
they have with those people be affected.

Participant 5 states that:

“Pag una, pero kadugayan dawat naman ko nila. Mag hinay-hinay lang gyud sila kilid
nako.”(At first, but as time pass by they have learned to accept me. They became
precautions around me.)

This shows that the socialization process does not happen all of a sudden.
Sometiems it is a learning process wherein you start of from being casuals, then after
knowing about the sickness you will be at the state of shock which could sometimes appear
as the distancing but as time pass by you will leard how to accept someone with
hemophilia. That could have a very good impact to the psychological ang pschosocial
health of a person suffering from hemophilia.

Participant 6 states that:

“If maingnan nako sila kay oo, I think of course mo lahi jud ila treatment nako pero siguro
not in a negative way but in a way that they’d be more careful around me ing ana nga
way.”(If I will be able to tell them, yes I think that their treatment to me would be different
but maybe not in a negative way but in a way that they would be more careful around me)

The positivity of the patient is very evident here. Once you meet someone with such
sickness your first reaction will be to think that they are fragile so, your treatment would
become different, you will treat them with more precautions and gentleness because you
tend to become scared of how the things you usually do affect the person. The patients,
themselves, know about this since they grew with it. They have more knowledge about it
than other people do.

Participant 2 states that:

“Oh, kay ang uban mo distansya man. Pero swerte man gihapon kay naa koy friends nga
dawat kayo ko.”(Yes, because others will distance themselves. But, I am still lucky because
I have friends who are willing to accept me.)

This shows that there will be those people who cannot accept someone just because
of a sickness they never wished they had. But somehow, hemophiliacs are still lucky in a
way that they are able to meet people who will be willing to accept them fully despite of
being a hemophilia patient. The acceptance from friends and not just from families is very
essential to make them feel that they are not alone in their battle with hemophilia. Thus,
this will be able to boost the fighting spirit of the patient. In terms of having lots of friends,
hemophiliacs tend to think that what they have now is enough for them.
 16

Participant 6 states that:

“No, with or without hemophila, I could still have lots of friends.”(No, with or without
hemophilia, I could still have lots of friends)

This statement pertains to the relationship of someone with hemophilia who can be
aided by factors due to financial stability. Therefore, the participant is borrn in a family
with strong financial support so she is being aided by factors which can be a reason for her
live a normal life, a life with socialization like how normal people do. Hemophilia is a life-
long sickness. No cure found but, there’s an aid. Factors plays a vital role in making a
patient experience a life of a normal person but these vials cost more than an average family
earns a week.

Participant 1 states that:

“Oo of course, kay dili raba ko makagawas so, if wala ko’y hemophilia mas maka socialize
ko.”(Yes, of course, I don’t often go out so, if I don’t have hemophilia I would be able to
socialize more.)

Hemophilia patients are as fragile as eggs. The moment that they get out of their
homs the higher the risk becomes. The participant have stated that if he is able to go out
often, the more will he be able to socialize, the more he will be able to make friends.
Hemophilia have hindered their socializing skills some way but this should not stop them
from socializing with other people any how.

Participant 1 states that:

“Dili raman, kay dawat raman ko nila ug aha ra taman ako mabuhat.”(No, they accept
me and my limits.)

In this statement the patient have seen that there will be those people who will
accept them even if they have hemophilia which can make them feel that they are accepted
and that they are being understood by the peole around him. It is good to feel like there
will always be someone whom you can run to, by making the hemophiliacs feel this, they
would not feel loneliness and this can help them boost there believe in themselves.

Factors that made life easier despite of Hemophilia

This theme discusses the factors that made the life of a hemophilia patient easier.
Things such as special treatments and exemptions from tiring and heavy activities made
the life of a hemophilia lighter and easier. Being able to realize that the society have
accepted and considered them bring a positive outcome to the pschological health of a
person suffering from hemophilia (Gillham, et al., 2015). Having the faith and hope
serves a fuel for every hemophilia patient to continue in being the best they could be and
battle their sickness.

Participant 5 states that:

“Oo. Kay gasto man kayo, unya lisod biya mi. Maka-ingon nga maypa ang uban wala.
Pero okay ra man kay mao may hatag sa ginoo”(Yes, because it is very costly, then we
are suffering from poverty. I could really say that other people have a better life, but this
is what God has given me.)

This statement states that the participant is not from a well-off family and that money is
quite hard for them to earn. The factors per vial is very costly which makes infusion of
factors quite hard for them.

Participant 1 states that:

“Oo, pero naa sa akong huna huna na naa man sad purpose si God nako ani”(Yes, but it
is in my mind that God has a purpose for giving this sickness to me)
 17

In this statement the faith of the hemophilia patient is very evident since he believed
that his illness is not just to make him appear weak and fragile but, his illness somehow
has a purpose. He thinks that him having such illness has a purpose that he may have
overlooked just because of the hardship he faced because of it. The participant can say that
other people have a better life than he does but there is nothing he can do about it, it is
given by God, so he must accept it. There are hemophiliacs who are not ashamed about it.

Participant 3 states that:

“Oo di jud siya mauwaw, bisan ako dijud ko mauwaw”(Yes, he is never shy, even me, I
will never be embarrased about it)

Hemophilia is a sickness one should not be ashamed of. All illnesses and disorders
must not become a subject of critique and it should not become something shameful for
the well-being of an individual suffering from the sickness. This sickness is not something
other people should be afraid of and this is a sickness that needs to be told and made aware
of the people around in order for them to be aware about such disorder.

Participant 4 states that:

“Kay mahibaw an raman sad nila, dili man sad ni makatakod.”(They will find out
eventually, anyways this sickness is not contangious)

Hemophilia is a chronic disorder. It is a sickness that is not contagious therefore, it

is not something we should be afraid of. It is seen that hemophilia patients are scared to
reveal to the people they just met that they have a disorder like hemophilia. In their
psychological aspect, they are thinking about the outcome of revealing to people about
their sickness because they are thinking that there will be those people who cannot accept
them and their sickness. It is hard for them to decide wether to reveal their sickness or to
rather keep it just to avoid losing the people they have.

Participant 5 states that:

“Kay dili man sad ni siya makatakod.”(Because it is not contagious)

This statement supports the previous statement stating that hemophilia is not a
sickness that is contagious. This is not a sickness that could infect other people so,
soacializing with them is not something normal people should avoid. Special treatments
are expected when having hemophilia.

Participant 6 states that:

“Special treatment? Well that is evident man jud but I am trying to tell them it does not
need to be that special since not like any other people who can’t walk and all pero maybe
I consider precautions.”

It is stated in this statement that special treatments are a part of having a hemophilia
but, it is not neccessary to give too much special treatment because not like the ones who
are amputated or the ones who has a disorder that hinders them to talk, to see, to walk and
others, who need the special treatment from other people, hemophilia patients, when not
suffering from any bleedings can live like how normal people do but with the presence of
precautions.

Participant 2 states that:

“Kaibaw naman ang maestro ana kay naa man mi doctor’s certificate. Naa siya’y special
treatment sauna exempted man siya sa mga activities”(The teacher knows about it, we also
have a medical certificate. He experience special treatments. Before he is exempted from
activities)

When patients are studying, it is important to inform their teachers about their case.
It is important for them to be educated about hemophilia because teachers are the parents
 18

away from home. In this way, the teachers could also inform their students about the
situation of their classmate and avoid further accidents that can occur when they are not
informed about their classmate having hemophilia. The good thing about it is that, people
are always open to understand and consider their weaknessses and downfalls.

Participant 3, 4, 5, and 6 states that:

“Oo exempted siya, kay exempted man jud nang mga in ana kay kasabot man ang mga
maestro” (Yes he is exempted because the teacher could understand his situation.)

”Ahh kuan exempted ko ana kahibaw sila ana. Known man sa among school ang
hemophilia, maong kahibaw na sila kinsa or unsay buhaton.” (I am exempted because they
know about it. Our school knows about hemophilia that’s why they know how to handle it
and who are the ones suffering from it)

“Oo, sa kanang PE kay exempted man. Kay naa biya koy sakit, hinay gyud ko.” (They give
exemptions because they know I am weak.)

“Of course exempted jud ko dai. Kasabot an sila sa akong ge bati.”(Of course, because
they understand what I have and what I don’t have.)

Exemptions are relevant in considering the wellfare of people who are suffering
from hemophilia. It is also important to know the limitations of an individual suffering
from hemophilia and consider the things they are prohibited to do. At school, educating the
people their is quite important in order for the information to propagate as well and to make
other students aware of them having a schoolmate and a classmate suffering from such
disorder.

Participant 6 states that:

“I used to love volleyball when I was a teenager and you could actually feel normal with
factors so I couldn’t say that my sickness hindered at all as long as I have my factors.”

In this statement, it is evident that the sickness can be battled out through factors.
When infused with enough factors to sustain and normalize their factor deficiency, living
a life like a normal person is very possible. To engaged in sports is something reachable
and not something away from one’s reach if and only if they are aided by factors.

The Daily Battle against Hemophilia

This theme gives highlight to every day battle that hemophiliacs are facing and the
obstacles that could hinder them from achieving something they would like to achieve.
According to Ljung (2014), the deficiency an individual have serves as their greatest
enemy. Hemophilia is a battle to endure for a life-long journey. In this theme, these battle
are given focus at and discussed to be able to realize that living a life with hemophilia is
not as easy as we think it is.

Participants 6 states that:

“Kasagaran wala man juy kaila ani nga sakit mao na ma educate nako sila through that
ma conduct nako ang awareness for this sickness diba?”(Most people do not really know
about this sickness that is why I will be able to educate them and I will be able to conduct
awareness for this sickness)

This sickness is not that well known by people. There are only limited studies
conducted in accordance to this sickness. As a patient herself, and a head of a hemophilia
association, she is taking this opportunity to inform and educate people that a sickness like
hemophilia exist in the reality today and that it is a sickness that must be given attention
since this sickness is not that easy. The battle between a person and hemophilia is a life-
long battle.
 19

Participant 2 states that:

“Mu ana sila, Kalouy man diay gyud sa imong anak noh.”(They would say “I really pity
your child.”)

It is quite painful to hear the word “pity” as an individual but there is no other word
that could describe how someone could feel after knowing about the sickness, hemophilia.
The participant have stated that when they tell other people about their sickness they would
always hear the word pity and somehow it could become quite annoying. Moreover, a
hemophiliac’s interest is hindered.

Participant 5 states that:

“Basket. Mag duwa ko pero ana ra anang kilid.”(Basket. I only play at the side of the
court)

One of the hardest thing about having hemophilia is the hindrances it bring. The
patient have stated that sometimes, there are some of his interest that gets hindered by his
sickness. He loves to play basketball but due to hemophilia it is quite impossible for him
to play a decent basketball game without any aid of factors. It is difficult for the side of the
patient since it is his interest that are being hindered by the sickness and this is very
challenging knowing that you want to be something you could not be.

Participant 1 states that:

“Oo... mao bitaw na ako gi ingon nga hemophilia akong pinakadako nga kaaway kay
pananglitan ganahan ka ma soldier nya dili diay pwede.”(Yes, that’s why I said that
hemophilia is my biggest enemy because if I wanted to be a soldier, I can’t)

Hemophilia is considered to be one of the greatest enemy of the participant. He

stated that he could not be the one who he wanted to be because of the sickness he have, it
is stated that if he wanted to be a soldier, then he cannot because he has the sickness that
hinders him to be what he wanted to be. It is dragging to think of everyday is a risk knowing
that accidents are always present anywhere and anytime.

Participant 6 states that:

“Usually, ang first aid would be an ice pack or any cold material when bruises or small
cuts happen the factors dayun to avoid further bleeding to occur”(Usually, the first aid
would be an ice pack or any cold material when bruises or small cuts happen, then the
factors to avoid further bleeding to occur)

Bleeding and cuts are part of the life of a hemophilia patient. The participant stated
that the first aid depending on the size of the accident is ice pack or any cold material to
slow down the bleeding and ease it a little bit to be able to buy time before actual medical
aids take place. But, it is always must to end in going to the hospital especially if the
bleeding that occurs is uncontrollable.

Participant 1 states that:

“Kanang gi butngan ice nya if kusog nga bleeding diretso hospital.”(I applied ice then, if
the bleeding is worse, go straight to the hospital)

Hospital always end as the place where hemophilia patients go whenever bleedings
that are not controlled with the aid of ice occur. The participant has stated that if certain
strong bleedings occur, he first thing that will always come to their mind as a hemophilia
patient is to seek medical help to the hospital. In line with this, the hemophilia patient could
sometimes feel that he becomes a burden but then, he cannot do anything about this.
 20

Participant 1 also states that:

“Usahay, pero karun dili naman, dawat man ko nilag unsa ko ug unsay naa nako. Ako
nalang iignore unsa’y-kanang naa nako”(Sometimes, but not right now, they accept what
I am, and what I have. I would just ignore what I have)

He states that there are times where he can feel that he is a burden to his family but
then, he realized that his family have accepted him for what he has and this became a reason
for him not to mind his sickness and stop thinking about himself as a sickly person because
deep down he knows he can be more than just a sickness. Yet, just how strong he is in
accepting because of the people who accepts them such is the sorrow thinking about the
people who judge them just because they may appear fragile because of some scars and
bruises.

Participant 5 states that:

“Ma lain sad, kay nay mga samad samad. Tan awon permi sa mga tao ba.”(I would be
embarassed because of the wounds. People would always look at me)

Admit it or not, in this world that is very superficial, physical appearance matters
to most of the people. With the appearance of wounds, scars, bruises and deformities in
their joints, hemophilia patients could sometimes feel insecurities. The sickness did not
just bring them lower self-esteem at times but it can also affect their physical abilities such
as walking when bleeding at their joints occur.

Participant 1 states that:

“Ahhh... kanang kuan maglisod ko’g lakaw unya sakit kaayo, kanang mukalit ra”(I find it
difficult to walk and it’s quite painful, it would ache suddenly)

It is difficult for hemophilia patients to execute the things they would want to do
when bleeding in their joints such as their knees occur because they would have a hard
time in walking and sometimes they would become unable to walk. This bleedings bring
sudden jolt of pain as stated by the participant. What becomes very hard for a female
participant is her monthly menstrual period.

Participant 6 states that:

“Yes, because it is hard. As a girl I undergo menstrual periods so that means I get admitted
everytime para ma infuse of factors”(Yes, because it is hard. As a girl I undergo menstrual
periods so that means I get admitted everytime to get infused with factors)

Monthly menstrual periods are a big struggle for girls but the struggle becomes
twice for females who are suffering from hemophilia. Factors are needed in order for them
not to bleed too much. Participant 5 stated that admission to hospitals have been a part of
her monthly routine. The patients will never lose in their minds the outlook of having no
hemophilia and thinking of how much life could be better when that happens and how
much free they would be.

Participant 4 and 5 states that:

“Oh usahay sad. Ahmm unsa kaha kung wala koy hemophilia. Kay sila mabuhat tanan”.
(Yes, sometimes too. What if I don’t have hemophilia, because they can do everything. )

“Oo oy. Kanang mabuhat nimo tanan ba nga walay magpugong.” (Yes of course. You see,
you can do anything without restrictions)

In the statement of the two participants, it is very evident that they could feel the
hindered freedom because of their sickness. They could sometimes think that if they don’t
have hemophilia, their lives would have been much better. And that they can do things that
are prohibited from them to do.
 21

Participant 1 states that:

“Oo, mabuhat siguro tanang bawal sa ako karun.” (Yes, maybe I can do things I’m not
allowed right now)

There is a long list of things that hemophilia patients are prohibited to take part to.
If they are not suffering from hemophilia they can always do the things they wanted to do.
The participant stated that if he does not have hemophilia he can do the things that are not
allowed for him to do because of hemophilia. With just a small bump or extreme contact
bleedings could occur which makes them vulnerable.

Conclusion

To summarize: the hardest thing of having hemophilia is waking up in the morning

knowing one has an illness that he/she would battle in his/her entire existence;
hemophiliacs live differently than others such that they live a life full of restrictions; and
they have a hard time socializing for the reason that such restrictions exist.

A life with hemophilia is like living in a bubble, a life so fragile. A person with
hemophilia is like an egg, one must be taken care because a single drop, bump, or push
could be a threat to their whole existence. It is not easy living a life with hemophilia because
every waking moment is a pure miracle, every second of the day must have full precautions,
and every step taken is a threat. A life with hemophilia is not just like a walk at the park.

Alive but not living, that is how the hemophilia patients describe their life. They
are alive yet, they are not living the life they want, the life they desire. A long list of
restrictions exists and these are the main reason why they are not able to live a life they
wanted. These restrictions became a barrier and hindered them from being able to do the
things they wanted to do. They are living a far different life from normal people.

They are having a hard time socializing with other people because of certain
restrictions. Such restrictions mostly involve outdoor activities. Virtual world may exist
but the socialization that takes place at the real world is different from what take place at
the virtual world. When socializing, being present outside and mingling with other people
with the same interest as the patient have is a part. But, socialization is not as easy as saying
hello when having hemophilia, engaging into activities is very important in order to
socialize with other people. The thing is, hemophilia hinders a patient to engage into
strenuous and backbreaking activities.

To sum these all up, living a life with hemophilia is living a life banded with chains.
A life of wanting but never having. A life battling with something you can never win over.
Living with hemophilia will never be plain sailing. The need to take care will always be
there. A life with hemophilia is going at a warzone having nothing but faith and
precautions, despite of knowing that at the end one cannot win.

Acknowledgements

We, the researchers would like to express our deepest gratitude to our parents for
being very supportive especially in terms of financial needs.

To our participants, who give us a spare of their time to share their experiences in
order for our research become a successful one.

To our friends who never failed to share their ideas and thoughts to make this
research the best it could be.

To our teacher who was there to guide us all throughout our journey in making this
research.

And most especially to the man above, this research would not be possible without His
guidance.
 22

Kirk Jhon L. Sabay

Lead Researcher, Senior High School Department
University of Cebu – Banilad Campus
Banilad, Cebu City
[email protected]

Mares Merka
Lead Researcher, Senior High School Department
University of Cebu – Banilad Campus
Banilad, Cebu City
[email protected]

April Marie Lauronilla

Research Associate, Senior High School Department
University of Cebu – Banilad
Banilad, Cebu City
[email protected]

Hanzel Llanto
Research Associate, Senior High School Department
University of Cebu – Banilad
Banilad, Cebu City
[email protected]

Gerald Capuyan
Research Associate, Senior High School Department
University of Cebu – Banilad
Banilad, Cebu City
[email protected]

Kerwin Pepito
Research Associate, Senior High School Department
University of Cebu – Banilad
Banilad, Cebu City
[email protected]
 23

APPENDIX A
TRANSMITTAL LETER
 24

APPENDIX B

RESEARCH INTERVIEW CONSENT FORM

Research Title: Depression: The differing Narratives of Couples in Couple Therapy

Researchers’ Name and Contact Information:

Kirk Jhon L. Sabay 0906-478-8033
Mares Merka 0929-177-1130
April Marie Lauronilla 0908-881-5346
Gerald Capuyan 0922-598-6647
Kerwin Pepito 0909-524-6369
Hanzel Llanto 0936-445-7681
Please put a tick on the box.

I confirm that I have read and understand the information sheet for the above
study and have had the opportunity to ask questions and clarifications on
the matter of the interview/anything that concerns me.

I understand that my participation is voluntary and that I am free to

withdraw at any time, without giving reason.

I agree to take part in the above study and share everything I know to
contribute to the success of the said research.

Please put a tick on the box.

YES NO

I agree to the interview/focus group/consultation being audio recorded.

I agree to the interview/focus group/consultation being video recorded.

I agree to the use of anonymized quotes in publications.

__________________________ _______________ __________________

Name of Research Participant Date Signature
 25

APPENDIX C

INTERVIEW QUESTIONNAIRE
Name of interviewee: ___________________________
Date of interview: _________________
Gender: _____ Male _____ Female
Age: _____
Occupation/Profession: __________________________

Purpose of the study:

The aim of this phenomenological study is to understand the lived experiences of people with
Hemophilia.

Interview Questions:
1. What is the hardest thing of having hemophilia?
a. How did you feel after you found out that you have hemophilia?

______________________________________________________________
__________________________________________________________

b. Do you think people without hemophilia live a better life than yours? Why?

______________________________________________________________
__________________________________________________________

c. Do you think your life would have been better if you were born without
hemophilia? Why do you think so?

______________________________________________________________
__________________________________________________________

d. Have you ever asked yourself what did you do wrong to have such disorder?

______________________________________________________________
__________________________________________________________

e. Do you tend to deny to people that you have hemophilia? Why?

______________________________________________________________
__________________________________________________________

f. Did any of your friends know about you having hemophilia? If yes, do you
think they give you any special treatment?

______________________________________________________________
__________________________________________________________

g. If there are bleeding that occur in your joints, how does it affect you physically?

______________________________________________________________
__________________________________________________________

2. How do they cope with everyday tasks?

a. Have you ever thought that you are a burden to your family, friends, and
teachers? Why?

______________________________________________________________
__________________________________________________________

b. When you wake up in the morning, what is the first thing you usually do?

______________________________________________________________
__________________________________________________________
 26

c. Do your teachers at school give you exemptions when doing physical

activities?

______________________________________________________________
__________________________________________________________

d. Accident wounds are inevitable. When you get one, what do you usually do,
your parents, your friends, your teachers?

______________________________________________________________
__________________________________________________________

e. Do your parents usually fetch you at school? Do you sometimes feel a little
embarrassed? Why?

______________________________________________________________
__________________________________________________________

f. Are any of your interests hindered by your condition? Why?

______________________________________________________________
__________________________________________________________

3. How do they socialize with other people?

a. Do you have a very supportive family? If so, how would you thank them?

______________________________________________________________
__________________________________________________________

b. When you hang out with you friends, do you feel any pressure not to disappoint
them when they are having fun with certain activities that you are restricted to
do?

______________________________________________________________
__________________________________________________________

c. When you meet new friends, do you tell them right away about your condition?
If yes, what is their primary reaction? If no, when do you usually tell them?

______________________________________________________________
__________________________________________________________

d. Do you think that when you tell your friends that you have hemophilia they
will treat you differently? Justify your answer.

______________________________________________________________
__________________________________________________________

e. Do you think that if you were born without hemophilia you could have lots of
friends? Why do you think so?

______________________________________________________________
__________________________________________________________
 27

APPENDIX D

Transcription of the Coded Data

Participants Interview Questionnaire
Specific sub-problems:
1. How did you feel after you found out that you have hemophilia?
 “Nasakitan kay nganong ako man, pero dawat naman nako run kay wa man
koy mabuhat.”
 “Hmm kato siyang nakuan dae… nagdugo iyang baba ohhh… pagkaduha
ato—ay permero jud ato iyang dinhi (pertains to eyebrows) nasamad siya
ba oh, nya pagkahuman iyang baba, nadam-ag siya ohh. Niya pagkahuman
iyang tuhod nidako kay nadam-ag nasad siya sa gawas. *sighs* nya
pagkahuman ato na admit siya dira nami naglisod og maayo kay nagtou mi
nga wala najud siya ba kay grabe naman gyud dakoa sa iyang tuhod abot
diri sa may--(points hips) oh kay nadam-ag siya. Pagkahuman ato nag edad
siya’g seven (7) years old nadasmagan siya sa tricycle dira najud sad mi
nag—grabe nga grabe gyud iyang ulo, mura nag faucet sa tubig nisirit jud
dae, duha ka samad diri og diri ari (points rear and top part of the head).
Mao to’ng grabe gyud kayo iyahang bleeding. Unya pagkahuman ato—
basta daghan gyud kayo siya’g samad. Dira gyud mi naglisod gyud kayo
mi’s tanan. Grabe kay iyang mga kuan niya sa iyahang kuan ba karon iyang
tuhod dako iyang siko. Aw pagbata niya normal ra man siya, diha na pag
one (1) year old niya nasamad siya di ari (points eyebrows) kay dili naman
maundang iyang dugo mura man siya’g tuldok ra sa dagom niya ni ana mu
nog maayo iyang.”
 “Ahmm kuan, 4months siya kanang mukaob na bitaw siya dayun nya naa
siyay lagom dire, nya maka ana rako na hala kanang hemophilia siguro ni
siya kay akong mga kaliwat gud, oo mga hemophilia katong si apre, oo
patay nana siya. Hmm nya iyang mama, naas camalig bato nagpuyo Nya
wala rato, kay mao raman to mawa raman ba nya dayun pag kuan na niya,
7 years old pag ibot pas iyang ngipon, mag sirit daw oo mao to, admit namos
community hospita. Nya hemophilia gyud siya.”
 “Pag panganak nako ang nag hematoma siya nya ang iyang right rest ning
burot. Pag burot, gi operahan mild ra nga surgery mild operation 22 days
pato siya gioperahan. nya mao na dayun to na kuanan siya nga hemophilia
siya. Kay prolong ang clotting time sa iyang dugo.”
 Kuyawan sad, pero kahibaw naman jud ko nga naa kay akong igsuon na laki
naa sad. Bag o lang sad siya namatay.” Commented [KB1]: Shocked
 “It was hard. The hardest thing would be the bleeding episodes.” Commented [KB2]: Hard
2. Do you think people without hemophilia live a better life than yours? Why?
 “Oo, mas hayahay sila. Kay ang... samok kay na nga sakit sad... kung mag...
ang hemophilia murag akong pinaka dakong kaaway.” Commented [KB3]: Battle against illness
 “Unya dili bya na siya muingong uroy nga maglaag bisag asa karon ra nga
nikuyog saamong silingan kay kuan kuno birthday unya tiguwang man sad
nagada niya, malouy siya ba mao ng nikuyog sad siya. Ingon ko
pagmatngon gyud tawn sa sakyanan kay diha gyud ka kabikang raba. Daot
man gud na siya nga taas.”
 “Oo muana jud siya pero okay raman kay di mansad siya makaingon nga di
nako palakaw lakawon mo sugot raman ko an lang nga pag amping pirmi. Commented [KB4]: Extra careful
Nya maka matngon raman sad ko inig abot niya kay lain mana siyag
hinigdaan.”
 “Ay wa kay ingon nalang ko gihatag sa ginoo.”
 “Oo. Kay gasto man kayo, unya lisod biya mi. Maka-ingon nga maypa ang
uban wala. Pero okay ra man kay mao may hatag sa ginoo.” Commented [KB5]: Expensive
 28

 “I was born with this illness but life with hemo went less of a burden with
my parents.”
3. Do you think your life would have been better if you were born without
hemophilia? Why do you think so?
 “Oo, mabuhat siguro tanang bawal sa ako karun.” Commented [KB6]: Life full of restrictions
 “Ana depende gyud ana. Murag lahi lang gyud kayo siya.”
 “Oo, mu ana gyud siya. Nagtrabaho unta ko ma, muana siya kay kato bitaw
nga nag trabaho siya sa canteen sa CTU, ig gabii kung mauli siya mu ana
na siya, ma paliti usa ka kilo bugas nya mao jud na nga ganahan nako, nindot
jud unta nga naa siyay trabaho kay di bitaw siya dawo hmm muhatag jud
siya nya katong September naka trabaho na siyas boardwalk kanang tinda
tinda rasad ba nya oo muhatag jud siya inig abot niya muana na "ma diay
crispy ma among subra sa tinda ma gipang hatag ras tag iya" kanang oo
nindut unta bitaw siya.”
 “Oh usahay sad. Ahmm unsa kaha kung wala koy hemophilia. Kay sila
mabuhat tanan.”
 “Oo oy. Kanang mabuhat nimo tanan ba nga walay magpugong.” Commented [KB7]: Less freedom
 “It would have been much better if I didn’t have this illness but since it is
what He gave me so I must accept it.”
4. Have you ever asked yourself what did you do wrong to have such disorder? How?
 “Oo, pero naa sa akong huna huna na naa man sad purpose si God nako
ani.” Commented [KB8]: Purpose
 “Ni ana gani na siya dong kanang “nganong ako man sad ang gitagaan aning
sakita oy nga perte man sad nakong paita ani.”
 “Oo maka ana sad gyud siya nganong giing ana siya mag hilak na siya
muingon "ma walay ginoo?" Muana ko "naa man, gitabangan man gihapon
ka niya kay mag ampo ko nga maulian ka, maulian man jud ka" nya ato
laging last katong March ug April kay buwan najud kapin to siya gahigda
nya i admit lagi unta siya nya di man jud siya kay hasul walay kwarta ay
naa man koy phil health akong anaon ba, sagdi lang makuan raman na nya
di gyud siya ba nya ako jud siyang pugson nga diman gyud siya nya agakon
lang gyud nako siya sigeg pakaon nya ako to siyang hinungit nya basta
atimanon jud nako siya nya ok ra kay ako mang anak hapit gyud to siya
buwan nag in ato nya.”
 “Oo naka kuan sad ko nganong naa koy ing ani hantud ako rang nadawat
kay kaliwat man.”
 “Pag una, pero dawat naman nako nga di jud ni malikayan.” Commented [KB9]: Inevitable
 “Yes, because it is hard. As a girl I undergo menstrual periods so that means
I get admitted everytime para ma infuse of factors.” Commented [KB10]: Not easy
5. Do you tend to deny to other people that you have hemophilia? Why?
 “Di nako iingon dayun, kay basin unsa ilang isulti ba. Ayha rag mangutana
na sila.” Commented [KB11]: Opinions of others
 “Isulti dong, mis-mismo ako. Muingon gyud ko nga akong anak kay naa
gyud sakit nga ing ani. Perte gyud namong paita labi nag mu-atake na nah
iyang sakit di gyud namo ma kuan, nag ihis ran a siya’g dugo.”
 “Oo di jud siya mauwaw, bisan ako dijud ko mauwaw ako jud isulti bisan Commented [KB12]: Something to be unashamed.
sa mga maestra, hmm ako jud isulti na in ana siya nya grade 5 rana siya
kutob kaybiyang tuhod ba, abswnt siyag duha ka semana kay in ana man
jud na basta tuhod mo kuan duha jud na ka semana usa ka lakaw. Ang
principal ato diman kasabot akong sultian ba, dijud siya kasabot ana ko,
mam pangutana og doctor kay aron maly mo sulti nimo nga in ana nang
hemophilia muana siya, iuli na inyong libro kay di na sila mo enroll kuno
namo kay tungod ana nya pag eskwela niyag ALS nakapasar baya jud siya
kay arang2 sad untag utok hmm kamao2 man sad unta siya unsaon man nga
ug manarbaho aiya mag apply kay physicalon baya, nya hibaw an nga ing
ana siya dinalang siya madawat.”
 29

 “Usahay isulti dayun usahay dili. Kay mahibaw an raman sad nila, dili man
sad ni makatakod.” Commented [KB13]: People will eventually know
 “I sulti man, kay dili man sad ni siya makatakod.”
 “My friends, all of them are aware naman. I usually tell them right away Commented [KB14]: Not viral
man sad kay makabalo ra man sad sila.”
6. Did any of your friends know about you having hemophilia? If yes, do you think
they give you any special treatment?
 “Oo, mas hayahay sila. Kay ang... samok kay na nga sakit sad... kung mag...
ang hemophilia murag akong pinaka dakong kaaway.”
 “Oh, ila man siyang palanggaon. Salig man sad ko anang iyang mga amigo
dong.”
 “Oo kahibaw nya pinangga rajud nilas harold kay ilang dad on kung mag
laag sila nya mamista sila mga nindot sad na iyang mga barkda kay nakapili
sad siyag in ana ba.” Commented [KB15]: Supportive friends
 “Oo kahibaw. Wala ra dawat ra careful kay sila nako ila gani kong bantayan,
hinay gyud sila diri nako ba.” Commented [KB16]: Friends are extra careful
 “Oo kahibaw man sila. Mag bantay sila permi kilid nako.”
 “Special treatment? Well that is evident man jud but I am trying to tell them
it does not need to be that special since not like any other people who can’t
walk and all pero maybe I consider precautions.” Commented [KB17]: Special treatment
7. If there are bleeding that occur in your joints, how does it affect you physically?
 “Ahhh.. kanang kuan maglisod ko’g lakaw unya sakit kaayo, kanang
mukalit ra.” Commented [KB18]: Physical aspect
 “Idagan sa hospital wala mi buhaton sa balay kay wa man mi mahimo diri.
Mao ra gihapon di ma tang-ong iyang dugo.”
 “Oo kanang kuan sus ako manang siyang kuanan ug hagonoy dukdukon
raman na no nya ipuga rana nya ma kuan raman na. Nya ako dinasad ko
makuyawan maanad nako nga in ana siya ba dinakl ma taranta naanad
nako.”
 “Kuan compress ug ice akong una buhaton. Naay mga samad samad nga di
na mawala.”
 “Ma lain sad, kay nay mga samad samad. Tan awon permi sa mga tao ba.” Commented [KB19]: Scars
 “Usually, ang first aid would be an ice pack or any cold material when
bruises or small cuts happen the factors dayun to avoid further bleeding to
occur.”

1. Have you ever thought that you are a burden to your family, friends, and teachers?
Why?
 “Usahay, pero karun dili naman, dawat man ko nilag unsa ko ug unsay naa
nako. Ako nalang iignore unsa’y-kanang naa nako.” Commented [KB20]: Try to ignore the illness
 “Ohh… nisulti gyud bitaw na siya tawn dong. Mu ana siya “nganong ako
man intawn no na maingon-ingon ani man ko nga gi tagaan man ko’g sakit
nga ingon ani?” perte gyud nakong kuan—di man siya parihas sa iyang
igsoon nga murag lagsik gyud sa tanan, bisag asa lang mag laag, usahay
mag intra basket ing an aba. Dili gyud siya ga ingon nga mao na. kay naa
man siya’y sakit maglikay nalang gyud siya.”
 “Oo muana sad oy maluoy sad jud tawn ko kanang muana jud na siya nako
nga "ma ayaw nalang kog atimana ma oy" mao na mang hilak nami in ana
bitaw siya murag mawad an bitaw siyag pag laom nga mabuhi pa siya pero
dili ko oy, mama baya ko ako jud siyang kuanon kung unsay akong ma
himo. Muhilak ko ayaw pag in ana, hahah ayaw pag in ana rold kay mabuhi
paka oy kato lagi katong last niya nga grabe kaayu muana jud siya nga di
na siya paatiman, dina siya papalit ug tambal. Nya mao to nga niana siya
nga ma ig pista mag videoke ta nya akk siyang giingnan nga pag pakaayo
gyud kay mangutang jud kog kwarta mag videoke ta nag videoke jud mi oo
ako jud gihatag niya kay naa man koy sad niya nga basta ma ulian jud siya
nya naulian man jud siya.”
 30

 “Oo pero dawat naman nako nga in ani ko kay kahibaw man gyud ko na
kahibaw sila nga naa koy ing ani.” Commented [KB21]: Burden
 “Wala man sad. Karun nga kaya na nako manginabuhi, kay mo lihok man
jud ko para maka suporta nila ug sa akong sakit.”
 “Sauna I used to think of myself as a burden to my parents pero they never
failed to remind me that I am not.” Commented [KB22]: Moral support from parents
2. When you wake-up in the morning, what is the first thing you usally do? Describe.
 “Wala ra, mura rag normal gud. Murag rag way sakit nga grabe. Mag
stretching sad mga ana.”
 “Wala raman dong, mura raman siyag normal nga tao.”
 “Wala ra, pariah ra sa ako. Normal ra.”
 “Ahh wala normal ra.”
 “Wala ra man jud, mura rag normal gud bangon ligo, toothbrush mga ing
ana.”
 “Nothing really. Just like anyone else ra man.” Commented [KB23]: Just like a normal person
3. Do your teachers at school give you exemptions when doing physical activities?
Why?
 “Usahay kay masakiton biya ko, pero kung kaya nako mo apil jud ko.”
 “Wala man siya ni skwela og college, college naman ta na siya ron dae.
Grade 12 ra na siya kutob. Kaibaw naman ang maestro ana kay naa man mi
doctor’s certificate. Naa siya’y special treatment sauna exempted man siya
sa mga activities, naa man siya doctor’s certificate. Pero makaingon gyud Commented [KB24]: Special treatment
siya oy nga nindot gyud unta tawn iapil, unsaon man na di man gyud siya
ka intra ana. Ang maestro kaibaw man ingnon lang siya na “ay nalang pag
intra-intra ana.” (masamad sa school) wala paman siya kasuway ana. Iyang
friends wala sad kay dili man kayo nako na siya pakuyogon, kasagaran
iyang mga kuyog ra iyang mga ig agaw og tagsa kay kaibaw na biya gyud
unsay sakit niya.”
 “Oo exempted siya, kay exempted man jud nang mga in ana kay kasabot
man ang mga maestro.”
 “Ahh kuan exempted ko ana kahibaw sila ana. Known man sa among school
ang hemophilia, maong kahibaw na sila kinsa or unsay buhaton.”
 “Oo, sa kanang PE kay exempted man. Kay naa biya koy sakit, hinay gyud
ko.”
 “Of course exempted jud ko dai. Kasabot an sila sa akong ge bati.” Commented [KB25]: Exemptions in PE acitivities
4. Accident wounds are inevitable. When you get one, what do you usually do, your
parents, your friends, your teachers?
 “Kanang gi butngan ice nya if kusog nga bleeding diretso hospital.” Commented [KB26]: Hospital admission
 “Wala paman siya kasuway ana. Iyang friends wala sad kay dili man kayo
nako na siya pakuyogon, kasagaran iyang mga kuyog ra iyang mga ig agaw
og tagsa kay kaibaw na biya gyud unsay sakit niya.”
 “Wala man nuon, wala raman nuon. Kuan ice ra dayun hospital kung di na
mada.”
 “Around my friends, and at school, fortunately, wala pa man ko kasuway
nga nasamad ko.”
 “Kasuway ko kanang nang lagom ko. Pero nasamad, kay wala raman.”
 “Usually, ang first aid would be an ice pack or any cold material when
bruises or small cuts happen the factors dayun to avoid further bleeding to
occur.” Commented [KB27]: Ice pack
5. Do your parents usually fetch you at school? Do you sometimes feel a little
embarassed? Why?
 “Yes, dili...aw usahay mauwaw ko slight kay dako na biya ko.” Commented [KB28]: Embarassed
 “Oh iyang papa, di man siya mauwaw bahala’g nag kiang-kiang siya’g
lakaw. Second floor gyud baya iyang room pag high school, ang grade
eleven (11) nila patag ra man. Malouy gyud lagi ang mga maestra og
maestro niya. Wala raman siya ka experience og bullying.”
 31

 “Wala man nuon kay ako man jud na siyang ihatud nya ako ra siyang hatdan
ig ka udto nya ining ka hapon, ako jud na siyang kuhaon nya ako jud na
mag das bag niya. Diman jud siya ma uwaw kanang mo sulti bitaw siya,
diman siya mauwaw.”
 “Okay ra man nako. Private school man ko nagskwela so usually ang mga
students kay hatod sa ila parents.”
 “Oh atong nagskwela pa siya—kay ihatod na ko permi sa akong papa.
Usahay pero sabot raman ko.”
 “Yes, of course but I realized that di man jud na siya malikayan so okay ra
man nako.” Commented [KB29]: Shy
6. Are any of your interests hindered by your condition?
 “Oo... mao bitaw na ako gi ingon nga hemophilia akong pinakadako nga
kaaway kay pananglitan ganahan ka ma soldier nya dili diay pwede.” Commented [KB30]: Interest hindered
 “Basket gyud na iyang ganahan. Oh mag itsa itsa raman sad na siya dili, dili
ra siya kaapil sa mga duwa gyud.murag ma kuan siya ba, ambot unsa kaha’y
bation ana niya, masakitan guro na siya ngsa magtan aw sa iyang mga
kauban og mga manghud. Ohhh hilig, ganahan gyud kayo na siya’g mga
basket. Naa na siya anang basketan ma hapon.”
 “Ayy basket kanang ginakot ba nga barangay didto man akong mama
usahay adto mana siya matug ba muapil jud kunog basket nya akong ingnon
nga ngano man nga muapil siya? Muana siya nga diman daw siya muapil sa
daghan kanang itsa itsa lang kuno.”
 “Di man ko hilig ug sports, wala raman sad. Sa balay raman ko permi.”
 “Basket. Mag duwa ko pero ana ra anang kilid. Di jud ko mo apil anang Commented [KB31]: Hobby prohibited
duwa na gyud. Shoot shoot lang. Magdrive sad kog motor. Okay raman,
pwede ra man—basta amping lang gyud.”
 “I used to love volleyball when I was a teenager and you could actually feel
normal with factors so I couldn’t say that my sickness hindered at all as long
as I have my factors.” Commented [KB32]: Factors are a great help
1. Do you have a very supportive family? If so, how would you thank them?
 “Parents yes, oo. Fight jud ko mahimong brave kung naay mahitabo. Ako
sila ipray pud.” Commented [KB33]: Being brave.
 “Oh mu ana man siya dong, kanang adto gani sa hospital “ma, kanus-a man
ko kagawas kaha ani ma noh?” inig gawas namo, ana siya’g “salamat kayo
ma, naa na ta dire sa ato.” Mao na iyaha inig abot.”
 “Oo muana mana siya nga salamat ma ha nga imo jud ko gi atiman muhilak
jud ko kay maluoy jud ko niya kay dijud basta basta iyang sakit nga gi bati,
di jud.”
 “Wala ra thank you kaayo ma nga in ana supportive kaayu mo nako, mao
ra.”
 “Ohhh, kay naa koy pamilya nga dawat ko ba. Bisan lisod mi.” Commented [KB34]: Supportive family despite of
 “I socialize like how normal people do ra man nya in terms of having a financial issues

supportive family. Yes, very supportive ones and I could really thank them
by saying thank you. Never ending thank yous labi na ma hospital na pud
ko unya sila ra biya jud ang naa.”

2. When you hang out with your friends, do you feel any pressure not to disappoint
them when they are having fun with certain activities that you are not allowed to
do?
 “Dili raman, kay dawat raman ko nila ug aha ra taman ako mabuhat.” Commented [KB35]: Limited capabilities
 “Di man kay sa bilyaran pa intrahon man na siya. Ohh…hmm… pa intrahon
na siya sa bilyaran.” Commented [KB36]: Very accepting friends
 “Ay di man diman siya ma kuan kung di siya malabot kay makasabot raman
sad siya.”
 “Ahh dili, anha ras skwelahan, sa canteen lakaw lakaw ra diha. Ah dili ra
kay okay raman nako tan aw rako kay basta masakiton, hinay gyud ko.”
 32

 “Dili ra man, kung mag lag ko mag normal lang jud ko’g lihok.”
 “Sauna as a teenager, oo. Kanang manglaag then ako naa koy chaperone Commented [KB37]: Having chaperone
then naa silay buhaton nga dili pwede nako ma pressure jud ko kay basin
malain sila pero they understand man sad daw kay wa man silay laing
mabuhat kung dili mo sabot nako.”

3. When you meet new friends, do you tell them right away about your condition? If
yes, what is their primary reaction? If no, when do you usually tell them?
 “Dili dayun, dira pako mu ingon if naa nay mahitabo nako.”
 “Basta ako, sa akoa isulti gyud nako dayon. Sama nato di pa kaayo ta kaila
ingon “hala akong anak perte gyung louya kay masakiton akong anak,
hemophilia man sakit sa akong anak, kanang mag bleeding ba, kanang
masamad og gamay.” Musulti gyud ko, kanang sa akong trabahoan, musulti
man gyud ko. Mu ana sila “Kalouy man diay gyud sa imong anak noh.” Commented [KB38]: Pity
Mangutana sila unsa ng hemophilia, ako man ingnon isturya sa doctor
akong nahibawan—muana man tong doctor nga akong gikuanan sa chong
hua nga “dawat ba kaha ka aning sakita dong, nga sakit mani’s mga dato—
royal blood maning dugoa.” Muingon rako nga mao ni sakit sa akong anak,
hemophilia.”
 “Oo iya gyud sultihan bisag ako mo ingon sad ko nga ing ana si harold kay
aron bitaw nga di siya kuan kuaon. Muana rasad nga kaluoy sad ni harold
no nga ing ana siya kutob kud sa makabati nga hemophilia si harold muana
jud og kaluoy.”
 “Ahh dili. Kay muabot man ang panahon nga mangutana ra sila nya mo sulti
ko.” Commented [KB39]: Time
 “Di sad, maghuwat lang kog mangutana sila nako.”
 “If naa koy makaila kay sauna feel nako iingon pero as time pass by labi na
sa ako ge dad run ug usa pa jud kos nangusog aning organization mao ng
taga naa koy ma meet ingnan dayun nako then kasagaran wala man juy kaila
ani nga sakit mao na ma educate nako sila through that ma conduct nako
ang awareness for this sickness diba?” Commented [KB40]: Hemophilia is not a very well known
4. Do you think that when you tell your friends that you have hemophilia they will illness
treat you differently? Justify your answer.
 “Dili raman, mura raman sila’g wala. Dawat ko nila unsa’y naa ug wala
nako.”
 “Mu ingon ang mga tao nga “kalouy sad anang sakita noh nga mag bleeding
man diay na, dili man diay ma tang ong ang dugo.” Muingon ko nga “oh!”
og kanang di sad kagawas ang dugo, muburot man gyud na. okay raman
iyang mga friends kay di biya manakod ng sakita.”
 “Ayy dili man sad, dili man sad kay muana man sad ko nga di man sad ko
mahadlok ana kay di mana manakod.”
 “Ma shock ra nya muana sila nga mag hinay lang mi nimo, careful mi nimo.
 Pag una, pero kadugayan dawat naman ko nila. Mag hinay-hinay lang gyud
sila kilid nako.” Commented [KB41]: Mindful
 “If maingnan nako sila kay oo, I think of course mo lahi jud ila treatment
nako pero siguro not in a negative way but in a way that they’d be more
careful around me ing ana nga way.” Commented [KB42]: Extra careful

5. Do you think that if you were born without hemophilia, you could have lots of
friends? Why do you think so?
 “Oo of course, kay dili raba ko makagawas so, if wala ko’y hemophilia mas
maka socialize ko.” Commented [KB43]: Can socialize more
 “Oh, kay ang uban mo distansya man. Pero swerte man gihapon kay naa
koy friends nga dawat kayo ko.” Commented [KB44]: Different treatment
 “Oo maka ana jud siya, maka ana siya nga maka trabaho ko, maka tabang
sa buhat, maka tabang man hinuon siya sa pag lung ag. Pariha atong naa
 33

iyang barkada nga mag luto silag saging, oo malingaw man sad siya kuyog
sa barkada.”
 “Wala ra lipay rako nga naa koy mga migo nga in ana. Bisan naa ko ani or
wala naa man gihapon sila kahibaw ko.”
 “Dili man, bisan naa koy sakit nga ing ani, daghan man gihapon kog
amigo.”
 “No, with or without hemophila, I could still have lots of friends.” Commented [KB45]: True friends
 34

APPENDIX E

DOCUMENTATION
35
 36

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