Building Thalassemia Awareness by Using Games
Lulu Eva Rakhmilla Lola Ilona Abdul Hamied
Public Health Department, Public Health Department,
Faculty of Medicine Faculty of Medicine
Universitas Padjadjaran Universitas Padjadjaran
Bandung, Indonesia Bandung, Indonesia
lulu.eva.rakhmilla@unpad.ac.id lola@unpad.ac.id
Edhyana K. Sahiratmadja
Biochemistry Department,
Faculty of Medicine
Universitas Padjadjaran
Bandung, Indonesia.
edhyanas@yahoo.com
Abstract—Thalassemia is an inherited autosomal recessive
blood disorder, characterized by abnormal hemoglobin due to
mutation. In severe conditions, patients will require regular
blood transfusions with common complications of iron overload
and spleen enlargement. Currently, Indonesian people are hardly
aware of thalassemia. Data show that the number of thalassemia
patients increases every year. The disease belongs to the genetic
disease which is not curable in line with other fatal diseases.
However, thalassemia can be prevented relatively easily, by
avoiding marriage between thalassemia carriers. This could be
supported by members of the community with ample awareness
and knowledge regarding thalassemia plus routine check
mechanism on genes of the carriers before any couple gets
married. West Java as the province with the biggest population
with thalassemia in Indonesia can be an example of participatory
educational approach to program implementation and genetic
screening. This study aims to determine the difference levels of
awareness between before and after the knowledge of thalassemia
are given using the medium of games to selected high school
students in Bandung. Therefore, this study is a comparative
analytical research undertaking with quasi experimental
research using the one group pretest posttest design
Keywords—thalassemia, awareness, high school students,
educational games
I. INTRODUCTION
Thalassemia was first clinically described in 1925 by
Thomas Cooley in patients of Mediterranean origin [1]. Since
then, this genetic blood disorder has gained interest from
various research communities which resulted in better
understanding and methods for its carrier identification,
prevention, and treatment. Although its first description was
published nearly a century ago, archeological artifact and even
DNA from remains have suggested that the disease prevalence
has occurred long time ago [2,3].
Eko Nugroho
GameLab, Computer Science Program
Bina Nusantara University
Jakarta, Indonesia
eko.nugroho@kummara.com
Sjarif Hidajat Effendi
Pediatric Department,
Faculty of Medicine
Universitas Padjadjaran
Bandung, Indonesia
dadangsjarif@yahoo.com
Thalassemia is a genetic disorder that involves the
decreased and defective production of hemoglobin. In such,
thalassemia is characterized by abnormal hemoglobin due to
mutation in chromosome-16 for alpha thalassemia and
mutation in chromosome-11 for beta thalassemia. This
abnormal hemoglobin will be susceptible to hemolysis, so that
the age of the erythrocytes will be short and easy to lysis. This
leads to anemia hemolytic and iron buildup lysis in various
organs. In severe conditions, patients will require regular
blood transfusions with common complications of iron
overload due to lysis and spleen enlargement [4,5].
Rund describes that thalassemia is not infectious; it can be
only genetically transmitted from parents to their children in
an autosomal recessive pattern. The inheritance patterns are as
follow. If both parents carry a thalassemia gene, the
probability that each pregnancy to have a child without genes
of thalassemia or a totally healthy child with normal
hemoglobin is 25 percent, probability to have a child with only
one gene affected is 50 percent, and probability to have an
affected child or carrying both genes for thalassemia is 25
percent. Therefore, a patient with thalassemia inherits
abnormal genes from both thalassemia carrier parents [6].
Thalassemia is previously called Cooley's anemia as
thalassemia which means "sea in the blood" (Thalassa = sea,
emia = blood) due to the fact that thalassemia is prevalent in
the Mediterranean Sea area. Increasing migration of
populations at risk to non-endemic countries has resulted in
increasing prevalence of thalassemia gene mutations in all
parts of the world. Many studies showed relationship between
the distributions of falciparum malaria resistance with
hemoglobinopathies particularly alpha thalassemia [7,8,9].
Based on data from the WHO 1.67% of the population are
heterozygous for alpha thalassemia and beta thalassemia, with
a frequency of 2.4 per 1000 babies with thalassemia births.
WHO estimates that 7% of the world population are carriers of
disease hemoglobinopathies, and estimated 300,000-400,000
babies born will get the disease each year. Globally,
approximately 43,000 children with a major beta thalassemia
are born annually, mostly in developing countries.
Geographically, thalassemia is distributed as follows: Beta
thalassemia is prevalent in the Mediterranean, Middle East,
Central, South, and Southeast Asia, and Southern China while
alpha thalassemia is prevalent in Southeast Asia, Africa, and
India. Approximately 62% of thalassemia patients, needed
regular blood transfusion to survive, but only about 13% of
them have access to it. It was estimated that over 72,000
patients lived on regular transfusions but without iron
chelation therapy they will die from iron overload between 12
and 24 years of age. In developing countries, less than 50% of
transfused patients have access to any form of chelation
therapy, and probably only 10% benefit from the full protocol.
Consequently, two to four thousand patients die annually from
iron overload [4,5,9,10,11].
Health services in most countries are now much better, so
the number of deaths of babies born with blood disorders or
died at the age of less than a year were reduced significantly.
Further diagnosis and management are required for patients
who survived these phases and the management of thalassemia
needs high cost so that countries with a high frequency of
thalassemia will spend great health cost [13,14,15].
Currently the problem of thalassemia prevention is a
global issue. There are growing evidences that thalassemia can
be prevented relatively easily, by avoiding marriage between
thalassemia carriers. This could be supported by members of
the community with ample awareness and knowledge
regarding thalassemia plus routine check mechanism on genes
of the carriers before any couple gets married. Several
initiatives to prevent thalassemia in children have been
reported in many countries through increasing youth
awareness using various media[9,10,11,12].
The advent of games technology and ICT (information and
communication technology) has caused global shift of health
promotion and awareness targeted to youth population using
creative media such as games.[16,17,18,19]
The purpose of study is to determine the difference levels
of awareness between before and after the knowledge of
thalassemia are given using the medium of games to selected
high school or guardians. Exclusion criteria of this research
include respondents who do not fill out the questionnaire to
complete, have received an education program on thalassemia
in a span of at least 6 months. If respondents do not take part
in these games, miss to follow up or do not come back after
the intervention, then they are included into the dropout
criteria.
The research questions of this study are as follows:
1) What is the level of awareness of high school students
in Bandung on thalassemia?
2) How does the approach using games affect high school
students’ awareness of thalassemia in Bandung?
3) What factors could contribute to the differences in
understanding thalassemia?
It is hypothesized that game increases level of high student
awareness in Bandung toward thalassemia.
II. RELATED WORKS
The major public health problems until now in Indonesia
have been infectious diseases and malnutrition. Since health
insurance, BPJS (Badan Penyelenggara Jaminan Sosial)
became mandatory for all communities in Indonesia, the
health care of people has been improved but prevalence of
infant deaths due to infection and malnutrition has not
decreased. Genetic disorders such as thalassemia have
gradually emerged as a major residual cause of infant and
childhood mortality and morbidity. Prevention and control of
thalassemia in the target population of Indonesia requires a
well planned program to establish the epidemiology of the
disorders and education to raise the awareness of genetic risk
in the medical profession and the population at large. Carriers,
as the target population still have a high rate in Indonesia
based on the latest data about 5-10% of the population.[20]
Accurate diagnosis and advice should be provided to the
carriers, and the best possible management should be made
available to the affected patients. Effective considerable
efforts to reduce the incidence of thalassemia include the
screening of couples getting married and prenatal diagnostics
on the population of carriers. But both of these are very costly
so that it is necessary to strengthen good understanding in the
community about the importance of thalassemia. This
approach is cost-effective, and is proving remarkably
successful in reducing the frequency of thalassemia in
Mediterranean countries such as Cyprus, Greece and Italy
[21].
The control of thalassemia should be initially started from
a rather localized area as a model and then expanded to cover
as large a population as possible. There are growing initiatives
to increase awareness toward thalassemia as a way to prevent
thalassemia in children. Some awareness programs are
targeted to parents and youth [12,22,23,24,25].
During the past decade, games have been widely used for
health promotion and awareness to youth with various levels
of success.[17,18,19] Game approach in raising awareness is
necessary, given the importance of this case, in order to
prevent an increase in the incidence. Currently families with
thalassemia still feel that the disease is a curse from God and
feel taboo to discuss it with others. This situation has led to the
lack of information that they should know. Based on previous
publications approach thalassemia game yet [16,17,18].
III. GAME AND RESEARCH DESIGN
A. Game Design
Game for this research is a form of board games which
consists of board and various kinds of pieces (dice, pawns,
counters, etc.), and a system of rules. The game for this
research can be based on pure strategy, chance (e.g. rolling
dice), or a mixture of the two.
Following Nugroho and Haryadi, board game is used for
this research due to the following reasons: (1) board game we
have the opportunity to present a simplified models of real life
problems, (2) board game contains tried-and-tested methods
for comparing the strengths of different players, different
situation, different parameter, allowing for them to be used as
a sample to compare and understand different approach to the
problem, and (3) board game provide high level interactivity
which is necessary to transform any data collecting process to
be fun and enjoyable [26, 27].
In general, the elements of game design can be divided
broadly into: (1) game theme, (2) game play, and (3) artwork.
In this research, the game elements will be designed so that it
complies and appropriates with the purpose of thalassemia
awareness among youth
B. General Research Designs
This study will be implemented in several high schools in
Bandung from January until Desember 2017 The study design
is quantitative as a quasy-experiment with pre-post test to
evaluate the effect of games on thalassemia to awareness of
students of high school in Bandung.
C. Study Population and Sample
The population of this research is high school students of
SMAN Jatinangor in Sumedang. The population is divided
into two groups: students who will accept game intervention
and students who will not accept game intervention as control
group.
The total sample size is determined using the Slovin’s
method with the margin of error of 5%. The sample for this
study is selected using purposive convenience sampling
technique.
D. Data Collecting
The instrument used is to be tested using the Rasch model
with a Likert scale which will transform the data into ratios for
the purposes of statistical analysis.
The questionnaire comprises of the following parts.
1) Section 1: Socio-demographic
2) Section 2: Awareness, knowledge and attitude
relating to the thalassemia disease and its screening.
3) Section 3: Participation in the national program to
prevent thalassemia.
The dependent factor of this research comprises:
1) Awareness
2) Knowledge
3) Attitude
Independent factors are mainly:
1) Games
2) Previous experience/knowledge
3) Socio-cultural
4) Educational background
E. Intervention Method
The game intervention methods will be given in the form
of interactive activities involving all components in the games,
with innovative materials that could provide a better
understanding of thalassemia. These intervention methods
using games refer to the components listed in the research
instruments. The purpose of the games is to encourage
participants to understand and internalize the most important
things regarding thalassemia. In the first week, a questionnaire
which includes sheets of informed consent and identity as well
as the pre-test questions will be administered to respondents
who have agreed to take part in the entire series of pre-test,
interventions games, and the post-test. Then the following
week, the respondents will be given intervention in the form of
games on thalassemia. After all the respondents have
participated in the games intervention, the researchers will
conduct a post-test to see the results of the intervention.
Respondents will be asked to answer all the post-test
questions.
F. Ethical Approval
This research requires ethical clearance that the proposal
will be submitted to the Research Ethics Committee of the
Faculty of Medicine, University of Padjadjaran. The request
for the permission to Jatinangor high school in the district will
be submitted to the principal of the school and the teacher
counselor. This study will also consider such aspects,
autonomy, beneficience, non-maleficience, and justice. For the
aspect of autonomy, all respondents will be asked for
informed consent prior to the study and all respondents have
the right to participate or not participate in this study. As to the
aspect of justice, all respondents have the right to participate
in this study and will be treated equally. The aspects of
beneficience and non-maleficence include discomfort or upset
time for the provision of health education materials and
awareness about thalassemia.
G. Data Processing and Analysis
The collected data will be processed using statistical
numerical analytic methods with the help of one computer
software program. The bivariate analysis is used to see the
relationship between two variables, namely the relationship
between independent variables and the dependent variables.
The researchers will test the normality of the data obtained. If
the results are found with a normal distribution then the data
will be statistically tested using a paired t test. If the results
obtained are not normally distributed then the data will be
statistically tested using the Wilcoxon test.
IV. PRELIMINARY RESULTS AND DISCUSSION
The preliminary step of this research has been
implemented involving 179 subjects in 2015, using a validated
questionnaire with items on knowledge, attitude and practice
about thalassemia for data collection. The game will be built
based on questionnaires that has been used in this study. After
the game has been developed, the researchers will apply them
in the population of high school students in Jatinangor [28].
Figure 1 shows the process flow of this research.
Fig. 1 Process flow of this research
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