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  • 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 AbstractThalassemia is recognized as one of the major health problem in Indonesia. It is estimated that about 10% of Indonesianpopulation are carrier of the mutated gene. Nevertheless Thalassemia is not well-understood by communities. Thispaper addresses how Javanese mothers view the role of God in Thalassemia. Semi-structured interview was employedto five mothers having a child with Thalassemia residing in Semarang, Central Java. Most mothers with Thalassemiachildren stated that Thalassemia was a result of bad consequence in the past, known as karma which they held atpresent. Having Thalassemia children would be perceived as ‘destiny’ and God’s trial to the family. All mothers agreedthat acceptance (nrimo ing pandum) of the child’s condition without questioning to God was essential as a way to copewith.This result points to the cultural awareness that exits in community, to the need for health care providers to be sensitiveto the health-related religious beliefs of patients and their families.Key words: Javanese mothers, Thalassemia, beliefs, nrimo ing pandumINTRODUCTION both parents are carriers, a one in four or 25% chance the child will be affected byThalassemia is a hereditary blood disease Thalassemia major, a one in two (50%) willwhich is common to happen in a place where be affected as carrier of Thalassemia, and onemalaria becomes epidemic such as in in four (25%) chance the child will not beIndonesia. 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. Thehaemoglobin, which the component of the red quantity of individuals suffering from thisblood cells that is responsible to circulate severe, life shortening, disorder tends to showoxygen 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 theabnormally rapid heartbeat, enlarged spleen, Most of Thalassemia patients are children.slow physical growth, difficult to carry out Patients come at least every month to thephysical activities, weak, lethargic, and hospital or the Red Cross to get bloodirritable. It was found there have been 13 transfusion in order to stay alive, moreovermutations of beta-Thalassemia identified, of some of them may also need additionalwhich the HbE, IVS-nt5, and Cd 35 mutations supportive drugs necessary. Because of theare the most prevalent (Setianingsih, et al. treatment received, the children will be absent1998). Thalassemia is passed on to generation for school at least for a day. During thethrough autosomal recessive pattern. When treatment, mothers usually accompany their 50
  • 51 Jurnal Psikologi Undip Vol. 9, No.1, April 2011affected children than fathers. In Javanese There are about 88% muslims in Indonesiaculture, mother is the main caregiver for (http://www.asiarooms.com/en/travel-upbringing and caring for the child (Albert et guide/Indonesia/Culture-ofal., 2005; Zevalkink & Riksen-Walraven, Indonesia/Religion-in-Indonesia.html).2001). Mothers tend to involve in all aspects Showing that Islam is the most dominantof their children’s life, including when their religion, which is also the larger populationchildren were sick. Chronic illness such as than any other country worldwide. ThisThalassemia 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 andfamily members. Parents have intense burden personal identities amongst the Indonesianof providing the child for their daily living. people.Researchers have found that mothers mayexperience burden for taking care of their This aim of the study is to describe howThalassemia 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 they2004). The burden is currently associated perceive the relationships between God onwith the consequences of the disease since the their health and illness by learning fromtreatment is expensive and everlasting Thalassemia case.(Sapountzi, et al 2006; Rao, Pradhan & Shah,2004). METHODHaving a child with chronic illness, such asThalassemia may impede the caregiver as Designwell as the family dynamics. Feeling of anger,shock, guilt, and relief are some of wide Semi structured interview was run to fivespectrum of emotions families developed. mothers living in Semarang, Central Java. ItThey 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 knowledgethe child will die and try to figure out how about Thalassemia and how they handled themuch they can expect from the child (Clarke- situation when they dealt with it and how theySteffen, 1997; Parker, 1996 in Packman et al., perceived the role of God in this disease.2007). Participants and ProcedureCoping strategies play an important role inmaintaining caregiver well being (Rafiyah, Mothers of children affected withSuttharangsee & Sangchan, 2011). Thalassemia were invited to participate in theResearchers suggest that religious beliefs may study. They were recruited at the waitinginfluence overall health and/or coping with an rooms for Thalassemia patients at either theillness (Idler, 1997; McFaden & Levin, 1996 paediatric ward of Dr. Kariadi Hospitalin McAuley, Pecchioni & Grant, 2000). Semarang, or at the Red Cross, branchReligious beliefs may directly influence Semarang. Qualitative data was obtainedhealth behavior by avoiding negative health- through interviews that lasted between 45 andrelated activities (Ellison, 1991) and 100 minutes. The written consent was givenindirectly influence health by providing and prior to the study. The subjects weremaintaining the social support in order to explained about the detailed research was allmanage stressful condition (Lazarus & about, and convinced mothers that anyFolkman, 1994 in Rafiyah, Suttharangsee & personal data would be confidential thereforeSangchan, 2011). their identity could not be traced back.
  • Widayanti, The Perceived Role of God in Health and Illness: The Experience of Javanese Mothers 52 Caring for A Child With ThalassemiaThe interviews were conducted with Cause of Thalassemiadiscussion focusing on three main areas:1. History of the disease Some of the respondents thought that2. Personal Experience and understanding thalassaemia could be caused by several about the disease possible triggers. It could be from internal and3. External control about the disease external factors, such as food, young married. And there was participant who related theThe semi structured enabled the interviewees disease as a ‘curse’ or ‘bad luck’ from theirto discuss interest of theirselves and questions ancestor or themselves for doing bad behaviorwere kept deliberately open, providing cues to in the past (known as ‘karma’) as said below:talk with minimum interruption from theinterviewer. The interview would be audio- R2 (mother of Thalassemia child):taped and transcribed. “……because of food or young marriage…butData Analysis I also thought would it be because of my mistake or whether I was against myThe transcribed would then be analyzed using parents.”IPA (Interpretative Phenomenological “An attempt of Allah….karma…the possibilityAnalysis) outlined by Jonathan A. Smith of my ancestor making a mistake…”(1999). This approach was used to create acomprehensive account of themes which had Coping strategysignificance within the original texts. Thus,connections were made from the dialogue. Religion was used as key resource forInitially interviews were transcribed. mothers, enabling them to deal withTranscripts were analyzed individually in Thalassemia as enhancing their own spiritualsequence, by marking relevant items, growth and through prayers helped them toidentifying emergent themes, noting cope with the symptoms of the disease, suchconnections, and ordering into preliminary as these statements:lists. R1 (mother with Thalassemia child)RESULTS AND DISCUSSION “I am more to religious, Ya Allah… had aResults 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 IThe mean age of mothers was 42 respectively. started accepting my child’s condition.”All of them were Javanese. Mostly weremarried (60%), 80% were Muslims and 20% Having an affected child also been remarkedwere Christians. The average numbers of by mother that if God gave one condition, Hechildren 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 ofThalassemia; 2) Coping strategy
  • 53 Jurnal Psikologi Undip Vol. 9, No.1, April 2011R5 (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 getso that…it’s like a warning. I think when we transfused.”are given a disease then it means that Godloves us……..I rely on Him. ….It is better to R4 (mother with Thalassemia child)be like this…….What we only could do justpray so that we would not get more affected “I used gingseng. It was three times a day forchild. Praying was the only way. ….the only 50 thousand for a month and he survived withway to accept the condition as the way it was. stable Hb for three months withoutIt was his destiny to be given such disease like transfusion.”this. What we could do was praying to GustiAllah (God). DiscussionR2 (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 etI am not alone even though I have a child like al (2003) religion was used as a referencethis. I cannot imagine if I am all alone, it can framework to understand what was happeningbe stressful.” in the external world and then to relate to it. In turn it would affect the individual’sRealizing 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 connectionchild’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 theychildren are worth whatever their condition could find relief and strength to carry on lifeis.” with their affected child. Positive thinking is more likely used in mothers to face theMeanwhile, keeping active was used for problems arise because of Thalassemia sincemothers 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 ofsupportive agents that will maintain the life of dependency, and then escort to existential andtheir child. Whereas mothers without spiritual concerns.. Examining theThalassemia child suggested that many efforts relationships, mothers’ perceptions of Godneeded to be tried, such as using alternative became the adaptive beliefs within the healthmedicines. 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 GodJamkesmas 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
  • Widayanti, The Perceived Role of God in Health and Illness: The Experience of Javanese Mothers 54 Caring for A Child With Thalassemiatraumatic events, and also a way of terms of their ability to adjust with the realityconfession about the presence of God in their of their life. Nrimo in pandum had a meaninglife. Moreover, through praying there was an of being active to make something work usingexpression of Javanese values such as their maximum efforts and let God decide thesurrender (pasrah), willing (rila), and result. Endraswara (2006) stated that in nrimoremember (eling) therefore mothers could there was a link between horizontal andenhance their identity, meaning and purpose vertical path, showing the relationship thatof life, hope, and reassurance. For mothers what they did would be resting in God’s will.with Thalassemia child, living close to God isthe way out to understand that being health is The study showed that belief systemsa 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 beliefwith Robinson’s study (in McAuley et al., systems functioned as a filter in order to2000) stated that religious beliefs influenced balance their life. Mothers’ understanding thatthe health beliefs of the African Americans. God had a role in all circumstances helped them to realize that there was a mighty sourceThis 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. Supportingto see negative life experience as a chance for mothers’ religious beliefs as caregiversthe growth of spiritual life (Ellison, 1991). therefore might enrich the patient-physicianBelieving in God made them realize that God relationship because the goals of medicineis in control of their health. The study of were to cure disease when possible and toHathaway and Pargament (1991) described lessen suffering always, since religious beliefsthree coping types related to the influences their expectations about theinterpretations of perceptions of God and self outcomes of various medical treatments andas active or passive: 1) a deferring style, also enhanced their compliance withmeaning that the self was passive and recommendations.responsibility for coping was placed underGod’s control; 2) a self-directing style, Limitation and Further Direction formarked by the activeness of the self whereas ResearchGod was perceived as passive; and 3) acollaborative style, in which both God and the Mothers with Thalassemia child must beself were active, working together to deal considered that their spiritual health andwith the difficult events. physical health are equally important. Therefore they would develop both theirIt was interesting to note that mothers awareness about the presence of God whichdeveloped collaborative style. Both God and gave strength whereas they would also bemothers were seen to be active agents to active on trying as hard as possible to keepencounter the child’s condition. Especially in their child’s health. A relationship with GodJavanese culture, concept of nrima ing might influence their appraisal towards thepandum 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 thewith the illness of their child. Destiny, importance of involving fathers as a part ofdevotion, and karma is an existence unity that significant person of the child, since thisbecome the standard on how life should be study did not. It was imperative to get father’srun. Moreover, people would be succeed in impression on how they perceived their
  • 55 Jurnal Psikologi Undip Vol. 9, No.1, April 2011child’s illness so that it might enhance a betterway of coping for parents related to the child. Sapountzi, D.S., Roupa, Z., Gourni, M., Mastorakou, F., Vojiatzi, E.,REFERENCES Kouyioumtzi, A. & Shell, S.V.A. (2006). Qualitative Study on theAlbert, I., Trommsdorff, G., Mayer, B. & Experiences of Mothers Caring for Schwarz, B. (20050). "Value of Children With Thalassemia in Athens, children in Urban and Rural Greece. Journal of Pediatric Indonesia: Socio demographics Nursing.21, 2; pp. 142-152. indicators, Cultural aspects, and Empirical findings," in The value of Setianingsih, I., Williamson, R., Marzuk, S., children in cross-cultural perspective, Harahap, A., Tamam, M. & Forrest, S. G. Trommelsdorf & B. Nauck, eds. (1998). Molecular Basis of beta- pp. 171-207.UK: Pabst Science Thalassemia in Indonesia: Application Publishers. to Prenatal Diagnosis", Mollecular Diagnosis.3, 1; pp. 11-19.Ellison, C. (1991). Religious Involvement and Subjective Well-Being. Journal of Rafiyah, I., Suttharangsee, W. & Sangchan, Health and Social Behavior.32; pp. H. (2011). Social Support and Coping 80-99. of Indonesian Family Caregivers Caring for Persons withEndraswara, S. (2006). Budi Pekerti Jawa: Schizophrenia. Nurse Media Journal Tuntunan Luhung dari Budaya of Nursing.1; pp. 159-169. Adiluhung. Yogyakarta: Buana Pustaka. Rao, P., Pradhan, P.V. & Shah, H. (2004). Psychopathology and Coping inHathaway, W.L. & Pargament, K.I. (1991) Parents of Chronically Ill Children. The Religious Dimensions of Coping: Journal of Indian Pediatric.71; pp. Implications for Prevention and 695-699. Promotion. Religion and Prevention in Mental Health: Conceptual and Timan, I.S., Aulia, D., Atmakusma, D., Empirical Foundations.9; pp.65-92. Sudoyo, A., Windiastuti, E. & Kosasih, A. (2002). "SomeMcAuley, W. J., Pecchioni, L. & Grant, J.A. hematological problems in Indonesia", (2000). Personal Accounts of The International Journal of Role of God in Health and Illness Hematology.76 Suppl 1; pp. 286-290 Among Older Rural African American and White Residents. Journal of WHO. (2006), Thalassaemia and other Cross-Cultural Gerontology.15; pp. Haemoglobinopaties, World Health 13-35. Organisation. Retrieved from www.who.int/gb/ebwha/pdf_files/EB1Packman, W., Henderson, S.L., Mehta, I., 18/B118_5-en.pdf Ronen, R., Danner, D., Chesterman, B. & Packman, S. (2007). Zevalkink, J. & Riksen-Walraven, J.M. Psychosocial Issues in Families (2001) "Parenting in Indonesia: Inter Affected by Maple Syrup Urine and Intracultural in mothers Disease. Journal of Genetic interaction with their young children.” Counseling.16; pp. 799-809.
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