1. THE PERCEIVED ROLE OF GOD IN HEALTH AND ILLNESS:
THE EXPERIENCE OF JAVANESE MOTHERS CARING
FOR A CHILD WITH THALASSEMIA
Costrie Ganes Widayanti
Faculty of Psychology, Diponegoro University Semarang
Jl. Prof Sudharto. SH, Kampus Tembalang, Semarang, 50275
costrie.ganes@gmail.com
Abstract
Thalassemia is recognized as one of the major health problem in Indonesia. It is estimated that about 10% of Indonesian
population are carrier of the mutated gene. Nevertheless Thalassemia is not well-understood by communities. This
paper addresses how Javanese mothers view the role of God in Thalassemia. Semi-structured interview was employed
to five mothers having a child with Thalassemia residing in Semarang, Central Java. Most mothers with Thalassemia
children stated that Thalassemia was a result of bad consequence in the past, known as karma which they held at
present. Having Thalassemia children would be perceived as ‘destiny’ and God’s trial to the family. All mothers agreed
that acceptance (nrimo ing pandum) of the child’s condition without questioning to God was essential as a way to cope
with.
This result points to the cultural awareness that exits in community, to the need for health care providers to be sensitive
to the health-related religious beliefs of patients and their families.
Key words: Javanese mothers, Thalassemia, beliefs, nrimo ing pandum
INTRODUCTION both parents are carriers, a one in four or 25%
chance the child will be affected by
Thalassemia is a hereditary blood disease Thalassemia major, a one in two (50%) will
which is common to happen in a place where be affected as carrier of Thalassemia, and one
malaria becomes epidemic such as in in four (25%) chance the child will not be
Indonesia. It is caused by mutated gene that affected in which there is 1 in 4 chance (25%)
influences the ability of produce of being affected in every pregnancy. The
haemoglobin, which the component of the red quantity of individuals suffering from this
blood cells that is responsible to circulate severe, life shortening, disorder tends to show
oxygen all over the body (WHO, 2006). increased rate. It is estimated that the
prevalence of being carriers vary between 6%
Thalassemia may caused patients get pale, to 10% (Timan et al, 2002).
fatigued, and suffer tachycardia, that is the
abnormally rapid heartbeat, enlarged spleen, Most of Thalassemia patients are children.
slow physical growth, difficult to carry out Patients come at least every month to the
physical activities, weak, lethargic, and hospital or the Red Cross to get blood
irritable. It was found there have been 13 transfusion in order to stay alive, moreover
mutations of beta-Thalassemia identified, of some of them may also need additional
which the HbE, IVS-nt5, and Cd 35 mutations supportive drugs necessary. Because of the
are the most prevalent (Setianingsih, et al. treatment received, the children will be absent
1998). Thalassemia is passed on to generation for school at least for a day. During the
through autosomal recessive pattern. When treatment, mothers usually accompany their
50

2. 51 Jurnal Psikologi Undip Vol. 9, No.1, April 2011
affected children than fathers. In Javanese There are about 88% muslims in Indonesia
culture, mother is the main caregiver for (http://www.asiarooms.com/en/travel-
upbringing and caring for the child (Albert et guide/Indonesia/Culture-of
al., 2005; Zevalkink & Riksen-Walraven, Indonesia/Religion-in-Indonesia.html).
2001). Mothers tend to involve in all aspects Showing that Islam is the most dominant
of their children’s life, including when their religion, which is also the larger population
children were sick. Chronic illness such as than any other country worldwide. This
Thalassemia in a child may influence the religious value is embedded in their daily life,
psychological responses of parents and other integrated into their life experiences and
family members. Parents have intense burden personal identities amongst the Indonesian
of providing the child for their daily living. people.
Researchers have found that mothers may
experience burden for taking care of their This aim of the study is to describe how
Thalassemia child for long time periods mothers’ religion and God are incorporated
(Sapountzi et al., 2006; Rao, Pradhan & Shah, into their health belief systems and how they
2004). The burden is currently associated perceive the relationships between God on
with the consequences of the disease since the their health and illness by learning from
treatment is expensive and everlasting Thalassemia case.
(Sapountzi, et al 2006; Rao, Pradhan & Shah,
2004).
METHOD
Having a child with chronic illness, such as
Thalassemia may impede the caregiver as Design
well as the family dynamics. Feeling of anger,
shock, guilt, and relief are some of wide Semi structured interview was run to five
spectrum of emotions families developed. mothers living in Semarang, Central Java. It
They wonder whether the child’s condition consisted of mothers having affected children.
will improve or even get worse, ask whether The questions were about their knowledge
the child will die and try to figure out how about Thalassemia and how they handled the
much they can expect from the child (Clarke- situation when they dealt with it and how they
Steffen, 1997; Parker, 1996 in Packman et al., perceived the role of God in this disease.
2007).
Participants and Procedure
Coping strategies play an important role in
maintaining caregiver well being (Rafiyah, Mothers of children affected with
Suttharangsee & Sangchan, 2011). Thalassemia were invited to participate in the
Researchers suggest that religious beliefs may study. They were recruited at the waiting
influence overall health and/or coping with an rooms for Thalassemia patients at either the
illness (Idler, 1997; McFaden & Levin, 1996 paediatric ward of Dr. Kariadi Hospital
in McAuley, Pecchioni & Grant, 2000). Semarang, or at the Red Cross, branch
Religious beliefs may directly influence Semarang. Qualitative data was obtained
health behavior by avoiding negative health- through interviews that lasted between 45 and
related activities (Ellison, 1991) and 100 minutes. The written consent was given
indirectly influence health by providing and prior to the study. The subjects were
maintaining the social support in order to explained about the detailed research was all
manage stressful condition (Lazarus & about, and convinced mothers that any
Folkman, 1994 in Rafiyah, Suttharangsee & personal data would be confidential therefore
Sangchan, 2011). their identity could not be traced back.

3. Widayanti, The Perceived Role of God in Health and Illness: The Experience of Javanese Mothers 52
Caring for A Child With Thalassemia
The interviews were conducted with Cause of Thalassemia
discussion focusing on three main areas:
1. History of the disease Some of the respondents thought that
2. Personal Experience and understanding thalassaemia could be caused by several
about the disease possible triggers. It could be from internal and
3. External control about the disease external factors, such as food, young married.
And there was participant who related the
The semi structured enabled the interviewees disease as a ‘curse’ or ‘bad luck’ from their
to discuss interest of theirselves and questions ancestor or themselves for doing bad behavior
were kept deliberately open, providing cues to in the past (known as ‘karma’) as said below:
talk with minimum interruption from the
interviewer. The interview would be audio- R2 (mother of Thalassemia child):
taped and transcribed.
“……because of food or young marriage…but
Data Analysis I also thought would it be because of my
mistake or whether I was against my
The transcribed would then be analyzed using parents.”
IPA (Interpretative Phenomenological “An attempt of Allah….karma…the possibility
Analysis) outlined by Jonathan A. Smith of my ancestor making a mistake…”
(1999). This approach was used to create a
comprehensive account of themes which had Coping strategy
significance within the original texts. Thus,
connections were made from the dialogue. Religion was used as key resource for
Initially interviews were transcribed. mothers, enabling them to deal with
Transcripts were analyzed individually in Thalassemia as enhancing their own spiritual
sequence, by marking relevant items, growth and through prayers helped them to
identifying emergent themes, noting cope with the symptoms of the disease, such
connections, and ordering into preliminary as these statements:
lists.
R1 (mother with Thalassemia child)
RESULTS AND DISCUSSION
“I am more to religious, Ya Allah… had a
Results special child….My religiosity influences me to
accept the condition as the way it is.
Description of subjects Accepting or declining depends on religiosity.
I really concentrated on my religiosity then I
The mean age of mothers was 42 respectively. started accepting my child’s condition.”
All of them were Javanese. Mostly were
married (60%), 80% were Muslims and 20% Having an affected child also been remarked
were Christians. The average numbers of by mother that if God gave one condition, He
children was 2, and had a low and middle also gave the strength to cope with it,
range of socioeconomic status. therefore relying their faith in God was the
only way to adjust with the child’s illness.
Two emergent themes are: 1) Cause of
Thalassemia; 2) Coping strategy

4. 53 Jurnal Psikologi Undip Vol. 9, No.1, April 2011
R5 (mother with Thalassemia child) “We also ever tried for alternatives
ingredients from Aceh and consume it every
“….God warned me…. I think it is like a hit mornings and evenings but until now still get
so that…it’s like a warning. I think when we transfused.”
are given a disease then it means that God
loves us……..I rely on Him. ….It is better to R4 (mother with Thalassemia child)
be like this…….What we only could do just
pray so that we would not get more affected “I used gingseng. It was three times a day for
child. Praying was the only way. ….the only 50 thousand for a month and he survived with
way to accept the condition as the way it was. stable Hb for three months without
It was his destiny to be given such disease like transfusion.”
this. What we could do was praying to Gusti
Allah (God). Discussion
R2 (mother with Thalassemia child) Religious approach as a way of coping was
common among person with chronic disease,
“We pray to Allah everything is running well. such as Thalassemia. According to Seibert et
I am not alone even though I have a child like al (2003) religion was used as a reference
this. I cannot imagine if I am all alone, it can framework to understand what was happening
be stressful.” in the external world and then to relate to it.
In turn it would affect the individual’s
Realizing that Thalassemia was a cronic perception of disease, disability and suffering,
illness, acceptance was perceived as a way to the individual’s degrees and concerns,
adapt and remain positive towards their responses to treatments, and the connection
child’s condition. between the physicians to health care system.
R4 (mother with Thalassemia child) Their awareness of God made them to be in
control and motivated them to be active in
“Just accept the condition as the way it is. All rituals, such as praying since through it they
children are worth whatever their condition could find relief and strength to carry on life
is.” with their affected child. Positive thinking is
more likely used in mothers to face the
Meanwhile, keeping active was used for problems arise because of Thalassemia since
mothers with an affected child in order to deal it could interrupt family in routines, finances,
with their child’s condition by using separate families, assemble conditions of
supportive agents that will maintain the life of dependency, and then escort to existential and
their child. Whereas mothers without spiritual concerns.. Examining the
Thalassemia child suggested that many efforts relationships, mothers’ perceptions of God
needed to be tried, such as using alternative became the adaptive beliefs within the health
medicines. and illness context.
R2 (mother with Thalassemia child) The study showed that 80% of the subjects
were Muslims whereas 20% were Christians.
“I make it easy because we already have All of the subjects put their trust in God
Jamkesmas so it will not develop into a through praying and other religious practices.
burden.” Praying itself as a means of coping was found
to be effective since it enabled mothers to
express emotion and made meaning in light of

5. Widayanti, The Perceived Role of God in Health and Illness: The Experience of Javanese Mothers 54
Caring for A Child With Thalassemia
traumatic events, and also a way of terms of their ability to adjust with the reality
confession about the presence of God in their of their life. Nrimo in pandum had a meaning
life. Moreover, through praying there was an of being active to make something work using
expression of Javanese values such as their maximum efforts and let God decide the
surrender (pasrah), willing (rila), and result. Endraswara (2006) stated that in nrimo
remember (eling) therefore mothers could there was a link between horizontal and
enhance their identity, meaning and purpose vertical path, showing the relationship that
of life, hope, and reassurance. For mothers what they did would be resting in God’s will.
with Thalassemia child, living close to God is
the way out to understand that being health is The study showed that belief systems
a matter of a gift from God and being ill is a influenced the way mothers viewed things,
way of God’s test. This finding was in line including health and illness. Their belief
with Robinson’s study (in McAuley et al., systems functioned as a filter in order to
2000) stated that religious beliefs influenced balance their life. Mothers’ understanding that
the health beliefs of the African Americans. God had a role in all circumstances helped
them to realize that there was a mighty source
This finding supported other studies that in the universe that controlled for everything,
stated strong religious faith may cause them including the life of their child. Supporting
to see negative life experience as a chance for mothers’ religious beliefs as caregivers
the growth of spiritual life (Ellison, 1991). therefore might enrich the patient-physician
Believing in God made them realize that God relationship because the goals of medicine
is in control of their health. The study of were to cure disease when possible and to
Hathaway and Pargament (1991) described lessen suffering always, since religious beliefs
three coping types related to the influences their expectations about the
interpretations of perceptions of God and self outcomes of various medical treatments and
as active or passive: 1) a deferring style, also enhanced their compliance with
meaning that the self was passive and recommendations.
responsibility for coping was placed under
God’s control; 2) a self-directing style, Limitation and Further Direction for
marked by the activeness of the self whereas Research
God was perceived as passive; and 3) a
collaborative style, in which both God and the Mothers with Thalassemia child must be
self were active, working together to deal considered that their spiritual health and
with the difficult events. physical health are equally important.
Therefore they would develop both their
It was interesting to note that mothers awareness about the presence of God which
developed collaborative style. Both God and gave strength whereas they would also be
mothers were seen to be active agents to active on trying as hard as possible to keep
encounter the child’s condition. Especially in their child’s health. A relationship with God
Javanese culture, concept of nrima ing might influence their appraisal towards the
pandum taught them to accept all condition as illness itself.
a gift of God therefore they can lightly face
(ikhlas) the situation and effectively cope The limitation of the study revealed the
with the illness of their child. Destiny, importance of involving fathers as a part of
devotion, and karma is an existence unity that significant person of the child, since this
become the standard on how life should be study did not. It was imperative to get father’s
run. Moreover, people would be succeed in impression on how they perceived their

6. 55 Jurnal Psikologi Undip Vol. 9, No.1, April 2011
child’s illness so that it might enhance a better
way of coping for parents related to the child. Sapountzi, D.S., Roupa, Z., Gourni, M.,
Mastorakou, F., Vojiatzi, E.,
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