Giving hope to children with cancer through a hospital-based education program
No.19_Dec 2020|Số 19 – Tháng 12 năm 2020|p.14-21
TẠP CHÍ KHOA HỌC ĐẠI HỌC TÂN TRÀO
ISSN: 2354 - 1431
GIVING HOPE TO CHILDREN
WITH CANCER THROUGH A HOSPITAL-BASED
EDUCATION PROGRAM
Kristine Karla G. Bouffard, Edna H. Jalotjot1,*
1University of Southeastern Philippines
Abstract:
Article info
The hospital-based Education Program (HBEP) is a research and community
extension program that eventually became Dumanlas Elementary School
Annex (DES-SPMC Annex), a public elementary school in Davao, City
Philippines. Evaluated in this study is the impact of HBEP from 2013 to 2018
utilizing qualitative research design particularly Applied Research approach
involving a Case Study of three patients enrolled in HBEP alongside parents,
the DES administrator/teachers, CED-USeP Extension Program Coordinator as
well as Volunteer Teachers and other stakeholders. An interview protocol was
used to obtain information of participants while secondary data which consist
of school records and other pertinent records were also considered. Results
revealed that a number of opportunities were enjoyed by participants which
include flexible and free access to education using Alternative Delivery Mode;
development of physical, cognitive, and socio-emotional domains through fun-
filled class activities, and opportunity for continuing education. Consequently,
benefits obtained include the development of socio-cognitive aspects, sustained
peer support, strong student motivation, and growing self-confidence.
Meanwhile. Challenges confronted by the participants were: physical effects
after treatment, cognitive and emotional disturbances, and coordination issues
on student whereabouts, financial constraints, and volunteer-teacher
availability at the initial phase. Hence, this study recommends sustaining
HBEP in support of EFA goals of UNESCO and of inclusive education.
Furthermore, it recommends expanding community extension activities to
assist DES in the development of student Individual Education Plan (IEP) and
other services for better delivery of education.
Recieved:
01/9/2020
Accepted:
10/12/2020
Keywords:
Hospital-based
education; education for
all, special education;
inclusive
education;
children with cancer
Introduction
Unarguably, education has always been
considered as a potent tool for children to acquire a
bright future. It equips children with the necessary
knowledge and skills to be able to live a better life
in the future. As a matter of fact, UNESCO (2018)
stresses the right of children to education which is a
fundamental human right. Furthermore, UNESCO
highlights that every individual, irrespective of
race, gender, nationality, ethnic or social origin,
religion or political preference, age or disability, is
entitled to a free elementary education.
Cancer which has been recorded as the second
leading cause of death worldwide has affected a
number of children. In fact, World Health
Organization (WHO, 2020) statistics shows that 9.6
million deaths; or one in six deaths is caused by
cancer. It is a large group of diseases that can
possibly start in almost any important organ or
Edna H. Jalotjot et al/ No.19_Dec 2020|p.14-21
tissue of the human body with the irrepressible
education program and to contribute improve ways
in delivering the program. Evaluation is a research
process where a researcher conducts a study to
abnormal growth of cells. Consequently, survivors
of the illness can get deprived of the opportunities
to live a happy and normal life with others; which
was found out to have adverse effects of cancer
treatments on children and in helping children fight
and cope with this killer disease.
determine the effect of
a
particular given
intervention. Furthermore, it means that it is
conducted to identify if there are certain success
indicators where intervention is administered and
therefore decides whether a program or policy can
possibly be expanded within the setting.
In the Philippines, the Department of Education
(DepEd) advocates the fundamental principle of
inclusive school where all children at different
aspects of life learn together wherever possible,
notwithstanding any difficulties or differences they
may have [1]. This urgent mandate from the DepEd
especially identifies children who are sick and
chronically ill must be included in the
implementation of this inclusive education. This
has been evident in Article 6, Section 1.2.8 of
Policies and Guidelines in Special Education
DepEd Order 72 Series of 2009. Obviously,
Inclusive Education is used as a strategy for
increasing Participation Rate of Children especially
for children with special needs. Also in 2019, RA
11215 known as the National Cancer Integrated Act
was promulgated to endeavor in preventing cancer
and improve cancer survivorship by augmenting
vital programs, including education.
Howard & Raitzer (2017) stressed that the
purpose of evaluation is to ensure that development
actions lead to development outcomes and learning
which is to contribute to the body of academic
knowledge on the basis of the employed techniques
and the conclusion drawn from the research. The
convergence of rising need for evaluation evidence
among development practitioners and increased
interest among academics present
a
unique
opportunity for intersecting research and practice at
the same time [2].
The key approaches for evaluation of Owen are
objectives-based, needs-based, goal-free, process-
outcome studies, realistic evaluation and
performance audit. Specifically, this study utilized
the Goal-Free approach to Evaluation (GFE)
wherein the evaluator conducts the evaluation
without particular knowledge or reference to the
stated or predetermined goals and objectives of the
program. In GFE the evaluator attempts to observe
and measure all the actual outcomes, effects, or
impacts, intended or unintended, all without being
cued to the program’s intentions.
With this premise, Southern Philippine Medical
Center (SPMC) in Davao City Philippines through
the initiative of the University of Southeastern
Philippines (USeP), a Hospital-Based Education
Program (HBEP) was established to provide access
and opportunity to children with cancer.
Hence, this study aimed to evaluate of HBEP
for children with cancer at the House of Hope
(HoH) in SPMC. Furthermore, this paper intended
to capture the different views and perspectives of
the patients, parents, staff, and other stakeholders
involved in terms of the effectiveness and
significance of the program. Their voices were
noteworthy to be heard of by the world as their
accounts are authentic and empirical; which can
certainly contribute to the development and
enhancement of a hospital-based education program
in the Philippines and elsewhere.
This study involved three (3) sets of participants
who were deemed necessary in evaluating the
impact of the interventions; these are: the evaluand,
the evaluation users, and the evaluators [2]. The
selection of the participants was based on the
inclusion criteria that covered only participants who
had cancer and were currently enrolled in
Dumanlas Elementary School Annex–SPMC
Campus (DES-SPMC), Davao City, Philippines.
They also served as the pioneering recipients of the
HBEP.
METHOD
The evaluand, is referred to here as the
Hospital-based Education Program (HBEP) aimed
to determine its impact on children with cancer.
This study utilized applied research design to
improve understanding about hospital-based
Edna H. Jalotjot et al/ No.19_Dec 2020|p.14-21
that. These children have been given the chance to
The evaluation users were the participants of the
study, the three children with cancer who were with
the HBEP since it started in 2013 and were
currently enrolled in the program. The evaluators
were coming from University of Southeastern
Philippines and their task was to facilitate the
implementation of the program.
enroll and participate in the class brought right to
the facility by quality teachers coming from a
leading teacher education institution by way of their
laudable extension program dubbed Hospital-Based
Education Program (HBEP) to which at a later part
have been formally endorsed to Dumanlas
Elementary School (DES) to make their classes
officially enrolled with DepEd which have formally
become into an Annex school of DES.
Participants involved which served as
evaluation users is composed of Grade four
students; all nine (9) years of age and diagnosed
with leukemia and leukemia with tuberculosis of
the spine respectively. All three are undergoing
treatment during the conduct of the study.
As regards flexibility, children with cancer-
learners find it appropriate for their case as they are
taught with the use of modules as an Alternative
Delivery Mode (ADM). The distribution of learning
materials (modules) to students while they are
confined in HoH and even upon discharge has
allowed them to learn at their own pace which is
highly significant since their current health cannot
warrant their success in the regular class. Modules
serve them well as these are handy which means
they can bring it with them whether they are in the
hospital beds undergoing medication or resting at
the HoH facility waiting for scheduled treatment.
A validated researcher-made interview protocol
guide was used to obtain detailed information or
stories pertaining to participants’ exposure to
HBEP. While, the secondary data were obtained
from the school records and other pertinent records
as tools to assess the impact of HBEP to the
learners with cancer.
Thematic analysis in the context of the study,
was conducted by the researcher particularly
closely examining the data to identify common
themes–topics, ideas and patterns of meaning that
came up repeatedly until deemed useful and
accurate representations of data. Writing up the
thematic analysis followed.
Responses of the participants on the
opportunities they enjoyed in the Hospital-Based
Education Program, particularly on accessing free
education, were captured from students as: “The
program… Sometimes Science, Math, spelling, etc.
…we were taught how to read and write and have
play and fun.” Stakeholders also claim that “We
teach them, we give them worksheets. Though, they
are under medication in the hospital, they brought
with them the worksheets as our basis for
RESEARCH RESULTS
Results are presented according to opportunities
afforded by HBEP to children with cancer and
other stakeholders, benefits brought to them,
challenges met in its implementation and an
incidental finding of the study.
attendance in
a day.” While they undergo
chemotherapy, if they want to go to school they
won’t beg anymore to sit in; here, education is free.
Children have big improvements because they were
given encouragement”
Opportunities
Results revealed that the opportunities
enjoyed by the participants consist of free access
to education, development of physical, cognitive
and socio-emotional domains through fun-filled
activities initiated by CED-USeP volunteer-
teachers.
Development of Physical, Cognitive, and Socio-
emotional Domains
The education children-with-cancer receive
from HBEP has developed them not only
academically but has transported them way beyond
classroom learning particularly citing their
physical, cognitive and socio-emotional domains.
Not to be left out are the socio-emotional domains
developed via the HBEP. It can be observed that
Flexible and Free Access to Education (Using
Alternative Delivery Mode (ADM))
One significant opportunity afforded to children
with cancer is that they were able to avail of a
highly accessible education, free and flexible at
Edna H. Jalotjot et al/ No.19_Dec 2020|p.14-21
participants acknowledged how they have improved resume to pre-illness activities that foster
normalization process.
socially and emotionally. Putting into consideration
their health status, these children are expected to
sulk and wallow in self-pity if not given proper care
and attention.
Benefits
As with any other thing on earth there will
always be something good, something positive,
something beneficial that lurks somewhere. The
education received by children with cancer through
HBEP has surely paved for a way bringing in more
benefits than previously intended.
Claims made by research participants revealed
how HBEP has developed them not only
cognitively but physically too as well as their socio-
emotional aspect. Students highlighted the fact that
they are learning much and it gives them the
excitement as any normal student in school. The
lessons learned are taken seriously and put to heart
by the learners despite their situations. They engage
in class activities willingly and communicate their
thoughts and feelings openly. The program indeed
has allowed them to experience real school
experience in a hospital-based context.
In fact, four themes pertaining to benefits
gained from the HBEP emerged out of the study
namely: Development of Socio-cognitive Aspects,
Sustained Peer Support, Strong Student Motivation,
and Growing Self-Confidence.
Development of Socio-cognitive Aspects
Considering the very nature of children with
cancer who most often than not are the types who
would choose to stop learning, stop mingling with
others whether peer or family, stop all activities
engaged with prior to their illness, HBEP has
created a way to assist these children into becoming
dynamic the way they used to, into allowing them
to focus on other fruitful endeavors other than their
medication. They have gained access to develop
socio-cognitive skills needed when they go back to
the mainstream society hopefully after the
successful fight with the disease.
Continuing Education
One dreaded effect of getting the disease is that
children stricken with cancer would not be able to
proceed with their studies; that they will be forced
to cease from enlisting themselves in the
conventional school and would be required to focus
on medication which normally takes a long process.
And for those who live far from SPMC would need
to leave their provinces to undergo treatment,
leaving their families, school, and all in their
normal lives prior to the ailment. They would need
to stay in the city, away from home and school, and
for some, with very limited resources. They would
need to leave school.
The opportunity to learn with others of their
kind have been considered beneficial as they would
not fear of being deviant in the group. This has
helped them to not focus on their limitations but
rather encourage them to try to learn as they see
others struggling with the disease also learning.
Children in HoH generally look forward to
attending scheduled classes and seem appreciate the
experience knowing its ‘real’ school they are
engaged with, not merely a remediation class to
while away time.
This finds support in the study of Chen et al. [2]
that Hospital-Based School is considered to have a
student-centered service with customized programs
to tailor-fit the unique needs of the sick children. It
was further emphasized that children confined at
hospitals must not be deprived of their right to
pursue happiness through education. The Arkansas
Children’s Hospital believed that school is a normal
activity for children and adolescents. Further, when
a child is in the hospital, it can interrupt the normal
pattern of schooling
This finds support in the study of Sullivan et al.
(2001), who found out that going back to school is
one of the biggest steps for a young survivor since
it is the primary tasks of children. Returning to
school, for children with illness, may be a road
towards psychosocial cure. As she added, school
serves as an avenue for children with chronic
illness to approach the process of living each day
and begin to regain control of their lives and
Sustained Peer Support
Edna H. Jalotjot et al/ No.19_Dec 2020|p.14-21
Children are children. There is genuineness in
enthusiastic learners which kept them coming back.
They felt welcomed by eager learners in spite of
their health conditions.
everything they do whether it shows pain or
pleasure. Such is what helps children with cancer
survive the rigors of intensive medication and
hospital-based education. They seemed to enjoy the
camaraderie with other tenants in the facility and
are actually banking on their support. They have
created friendships as they learn and it has
immensely helped each one of them. The
friendships they have formed and the things which
they commonly share (medication and education)
have become a very strong support. This could have
given them a feeling of togetherness during those
difficult times. They could also serve as a source of
strength and inspiration one to each other.
Growing Self-Confidence
Adults and children alike are often robbed of
self-confidence when stricken with dreadful
diseases. And once their health deteriorates, they
have the tendency to stop living the life they used
to possess. As if, the world stands still for them.
They lose the zest for life. Let alone education.
Every day becomes a journey to uncertainty
It is, therefore, taken as one great benefit
children with cancer has regained while undergoing
medication and receiving education via HBEP. It
has afforded them the chance to go on with their
studies and focus their attention to it to while away
time in between treatments which usually takes
months. This, at least allows them to show to the
world that they are still capable of doing some
things done prior to the disease like schooling. That
after the chemotherapy / radiotherapy and if blessed
to recover may proceed with what life offers them.
That they are not altogether useless and helpless in
the society. Those things greatly contribute for
children to grow self-confidence and press on
against the odds. They regained reasons for waking
up day after day as they wait for their teachers.
In fact, Gravestock et al. found in his study that
a number of parents reported that their children
experienced bullying and teasing from peers after
the diagnosis and during the treatment, resulting to
being distant from peers. Hence, HBEP paved the
way on connecting children with their peers [4].
Strong Student Motivation
Nothing can be more inspiring than knowing
children with cancer having a strong motivation
towards learning. It came out in this study that
students engaged in HBEP rely on no one other
than themselves. Except for really impossible times
The opportunity to engage in schoolwork has
elevated their sense of worth; that they too at their
present health status can continue the lives they live
prior to the disease without being laughed at. They
usually experience bullying outside especially when
their hairs start to fall off due to the therapy.
Children being vulnerable to harsh and destructive
words get much affected with the reactions of the
people outside more so if these come from peers. In
the contrary, they have started getting back the feel
of being students in the middle of treatment. The
program has rekindled their self-confidence in the
sense that they get a taste of schooling and hence
does not require them to go to the regular school
and risk both physical health and emotional health.
for them to join the class (like
a recent
chemotherapy/radiotherapy performed for the
patient), students generally show enthusiasm in
learning just like any normal learner despite their
situations.
This positive attitude has contributed a lot to the
success of HBEP implementation considering that
the primary clienteles’ response to the offered
extension program is crucial. Any extension
program are crafted with the ‘good end’ in mind
nevertheless its success also lie in how its target
clienteles take the offered service.
Hence, the warm response of students
particularly made up of children sick with cancer,
benefits firstly themselves and in effect all
stakeholders running the program. The volunteer-
teachers from CED-USeP and DES find it inspiring
to come to the facility and conduct classes to
Challenges
The challenges confronted by the participants
included physical effects after treatment, cognitive
and emotional disturbances due to death of friends
Edna H. Jalotjot et al/ No.19_Dec 2020|p.14-21
in class, post-medication monitoring of students
student is discharged and heading towards
recovery, they may find it difficult to proceed with
schooling in the mainstream. Teachers are finding
difficulty in persuading them to go back to
mainstream school as they are not anymore staying
in the HoH. There are obviously a number of
things they are grappling with while engaged with
HBEP.
enrolled, parent support, financial constraints and
volunteer-teacher availability.
After-Treatment Physical Effects
It cannot be denied that cancer-patients
undergoing chemotherapy/radiotherapy suffer
adverse after-effect syndromes immediately after
schedule of treatment. Gathered responses imply
that children with cancer undergoing intensive
treatment indeed suffer adverse after-effects of the
chemotherapy/radiotherapy. This does not even
have to be the same for each of them. One may
have body malaise, the other may have extreme
headache while some would throw up almost all
their stomach can hold. Hence, at times these
children get hampered by the physical reactions
brought about by the treatment which makes it
impossible for them to participate in the class. This
downtime lasts a few days after treatment and
should the class fall on the same schedule tendency
is, they could skip the class no matter how
interested they may be in learning. Medication
sometimes takes its toll on their frail bodies
preventing them from joining the class.
Other Findings
Coordination issues
Another struggle in the implementation of
HBEP pointed towards the issue of having a
coordinated class schedule. The responses from
most research participants revealed a common
struggle everybody has gone through that which
refers to coordination between teachers and
students’ schedule. At times, students are
available but teachers cannot come. Meanwhile,
there are also instances when the teachers report to
class as scheduled but are met with the message
that some students cannot make it to class for this
reason and that reason.
Everything seems
unpredictable. And it is not in the hands of the
teacher nor on the students that determine their
absence or presence in each class. The HoH staff
for their part cannot also predict who gets sick
today and gets better the next day.
Cognitive and Emotional Disturbances
Undergoing intensive medication is no joke.
The bodies react to the medicine so much so that
they get to experience cognitive and emotional
disturbances. Chemo patients have been observed
to display lower cognitive functions and different
negative emotions. Some may not be able to easily
get a good grasp of the lessons and eventually feel
inadequate to cope with the demands of schooling
even right before their faces. There are also times
they get disturbed with the passing of a co-patient.
This brings them down and feel fear of their own
fate. They get emotional knowing they are in a
similar situation and may or may not recover. There
is always this ‘downtime’ every after
chemo/radiation therapy and when they lose
somebody in the facility. Staying together in the
same place has created in them a special bond that
makes it more difficult for them to let go of
anybody.
Financial Constraints
Though their education in HBEP is free, the
struggle of children with cancer is the will to
continue when they return homes. Some of those
who have been discharged and are residing around
Davao City would even want to go back to HoH
just so they could participate in the class. This then
entails extra expense for the family. Should the
learner insist on going to HoH, they would need to
bring him/her on the scheduled classes?
Unfortunately, not all can afford the expenses
incurred by bringing their children to and from the
facility. Often, they are forced to drop schooling
particularly for those who live outside of Davao
City and lack the resources to bring them regularly
to HoH. This could actually be an added burden for
the family aside from the take-home medicines they
need to purchase. It can be noted that those who
cannot really support for transporting their children
Teachers for their part also gets affected as they
have not received a specialized training of coping
stresses of this kind. One thing more, once the
Edna H. Jalotjot et al/ No.19_Dec 2020|p.14-21
to and from HoH would resign to the fact that they
are forced to discontinue schooling as they are also
not physically prepared to go mainstream.
Based on the conclusions of this study, it is
recommended that Hospital-Based Education
Programs be sustained for critically-ill children as
an implementing arm of Inclusive Education in
accordance to UNESCO’s Education for All (EFA)
policy. Additionally, other health facilities like the
orthopedic or pedia-cardio department may be
explored for another possible Community
Extension project similar to children with cancer.
Also, a multi-disciplinary team composed of a
social worker, physical therapist, occupational
therapist, psychologist, etc. may be involved in the
preparation of Individualized Education Program
(IEP) to improve delivery of lessons for children
with cancer.
Volunteer-Teacher Availability at the Initial
Phase
HBEP being an Extension Program of CED-
USeP started in 2013 and basically was
implemented with the concerted effort of the
faculty and students of the college. They are
referred to as volunteer-teachers considering that
they are doing the activity outside of their regular
tasks in the university and with no additional
remuneration whatsoever except for the love and
commitment of teaching children with cancer
whose education has been put on hold due to long
term treatment sought at SPMC.
REFERENCES
It is worth noting that attendance of teacher-
volunteers has affected the children. They get
disappointed when they learn that the teacher is not
around for the scheduled class though they are
aware that teachers could have other matters to
attend to over the HBEP. Some even pointed out
that teachers may not be forced to report religiously
as their presence is purely voluntary in nature.
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CONCLUSION
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Based on the results of the study it can be
concluded that free access to education,
development of physical, cognitive and socio-
emotional domains through fun-filled activities are
accounted as opportunities brought about in the
Hospital-Based Education Program (HBEP).
Moreover, spiritual enrichment, development of
socio-cognitive aspects, sustained peer support,
strong student motivation and self-confidence,
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MANG LẠI HY VỌNG CHO TRẺ MẮC BỆNH UNG THƯ THÔNG QUA
CHƯƠNG TRÌNH GIÁO DỤC TẠI BỆNH VIỆN
Kristine Karla G. Bouffard, Edna H. Jalotjot
Thông tin bài viết
Ngày nhận bài:
Tóm tắt
Chương trình Giáo dục dựa vào bệnh viện (HBEP) là một chương trình nghiên
cứu và mở rộng cộng đồng, cuối cùng đã trở thành Phụ lục của Trường Tiểu
học Dumanlas (DES-SPMC Annex), một trường tiểu học công lập ở Davao,
Thành phố Philippines. Được đánh giá trong nghiên cứu này là tác động của
HBEP từ năm 2013 đến năm 2018 sử dụng thiết kế nghiên cứu định tính, đặc
biệt là phương pháp Nghiên cứu Ứng dụng liên quan đến một Nghiên cứu điển
hình về ba bệnh nhân đăng ký HBEP cùng với cha mẹ, quản trị viên / giáo viên
DES, Điều phối viên Chương trình Mở rộng CED-USeP cũng như Tình
nguyện viên Giáo viên và các bên liên quan khác. Một giao thức phỏng vấn
được sử dụng để thu thập thông tin của những người tham gia trong khi dữ liệu
thứ cấp bao gồm học bạ và các hồ sơ liên quan khác cũng được xem xét. Kết
quả cho thấy những người tham gia được hưởng một số cơ hội bao gồm quyền
tiếp cận giáo dục linh hoạt và miễn phí bằng Phương thức Phân phối Thay thế;
phát triển các lĩnh vực thể chất, nhận thức và cảm xúc xã hội thông qua các
hoạt động vui chơi trong lớp và cơ hội để được giáo dục thường xuyên. Do đó,
những lợi ích thu được bao gồm sự phát triển của các khía cạnh nhận thức xã
hội, sự hỗ trợ bền vững của bạn bè, động lực mạnh mẽ của học sinh và sự tự tin
ngày càng tăng. Trong khi đó. Những thách thức mà những người tham gia
phải đối mặt là: ảnh hưởng về thể chất sau khi điều trị, rối loạn nhận thức và
cảm xúc, và các vấn đề phối hợp về nơi ở của học sinh, hạn chế tài chính và sự
sẵn có của giáo viên tình nguyện ở giai đoạn đầu. Do đó, nghiên cứu này
khuyến nghị duy trì HBEP để hỗ trợ các mục tiêu EFA của UNESCO và giáo
dục hòa nhập. Hơn nữa, nó khuyến nghị mở rộng các hoạt động mở rộng cộng
đồng để hỗ trợ DES trong việc phát triển Kế hoạch Giáo dục Cá nhân cho học
sinh (IEP) và các dịch vụ khác để cung cấp giáo dục tốt hơn.
01/9/2020
Ngày duyệt đăng:
10/12/2020
Từ khóa:
Giáo dục tại bệnh viện;
giáo dục cho mọi người,
giáo dục đặc biệt; giáo dục
hòa nhập; trẻ em bị ung thư
8 trang
14/04/2022
1640
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