Artikel Nursyamsiyah Eng.pdf

ANALISIS FAKTOR YANG BERHUBUNGAN DENGAN NORMALISASI PADA ORANG TUA YANG MEMILIKI ANAK USIA 3-18 TAHUN DENGAN LEUKEMIA DI BANDUNG Nursyamsiyah1, Tuti Pahria2, Ikeu Nurhidayah2 ¹Mahasiswa Program Studi Magister Keperawatan, Universitas Padjadjaran ²Dosen Fakultas Keperawatan, Universitas Padjadjaran Email: [email protected]

ABSTRAK Merawat anak dengan leukemia memiliki kompleksitas akibat dampak penyakit dan pengobatannya yang tidak hanya dialami oleh anak sakit tetapi juga keluarga secara keseluruhan. Normalisasi dilakukan untuk memenuhi kebutuhan normal bagi seluruh anggota keluarga. Kesulitan dalam mencapai normalisasi berdampak terhadap penurunan fungsi individu dan keluarga. Perlu adanya identifikasi faktor yang diduga berhubungan dengan normalisasi pada orang tua. Tujuan penelitian ini adalah untuk menganalisis faktor yang berhubungan dengan normalisasi pada orang tua yang memiliki anak usia 3-18 tahun dengan leukemia di Bandung. Penelitian ini menggunakan metode cross sectional. Populasi penelitian ini adalah orang tua yang memiliki anak usia 3-18 tahun dengan leukemia. Sejumlah 104 orang responden berpartisipasi dalam penelitian ini yang diambil dengan teknik purposive sampling. Data dianalisis secara univariat (distribusi frekuensi), bivariat (uji chi square) dan multivariat (regresi logistik). Hasil penelitian menunjukan 66 responden (63.5%) lebih mudah mencapai normalisasi dan 38 responden (36.5%) lebih sulit mencapainya. Terdapat hubungan yang sangat bermakna antara tingkat keparahan penyakit (p=0.000), pendidikan orang tua (p=0.006), pendapatan orang tua (p=0.002) dan status pernikahan orang tua (0.009) dengan normalisasi. Sedangkan usia anak, lama waktu setelah didiagnosis dan dukungan sosial tidak berhubungan secara bermakna dengan normalisasi. Tingkat keparahan penyakit merupakan faktor yang paling berhubungan dengan normalisasi orang tua (p=0.001), disusul pendapatan (p=0.023) dan pendidikan orang tua (p=0.047). Perawat memiliki peran penting dalam upaya manajemen kondisi yang sesuai dengan tingkat keparahan penyakit anak, memberdayakan orang tua dalam mencari berbagai sumber finansial keluarga terkait pengobatan, memberikan pemahaman yang tepat tentang penyakit, rejimen pengobatan yang dijalani, membantu orang tua mengembangkan dan menggunakan strategi koping spesifik dalam mengelola penyakit anak.

Kata Kunci: Anak, Leukemia, Normalisasi, Orang tua.

FACTOR ANALYSIS RELATED TO PARENTS NORMALIZATION WHO HAVE CHILDREN AGED 3-18 WITH LEUKEMIA IN BANDUNG Nursyamsiyah1, Tuti Pahria2, Ikeu Nurhidayah2 ¹Master of Pediatric Nursing Student, Faculty of Nursing, Padjadjaran University ²Lecturer of Faculty of Nursing, Padjadjaran University Email: [email protected]

Abstract Caring for children with leukemia has complexity due to the impact of the disease and its treatment not only on the sick child but also on the family as a whole. Normalization is used to meet the normal needs for all family members. Difficulty in achieving normalization is related to the decline in individual and family functions. It is necessary to identify factors that related to parent normalization. The purpose of this study was to analyze factors related to normalization in parents who have children aged 3-18 years with leukemia in Bandung. This research used cross sectional method. The population of this study was parents who had children aged 3-18 years with leukemia. 104 respondents there participated in this study taken with purposive sampling technique. Data were analyzed using univariate (frequency distribution), bivariate (chi square test) and multivariate (logistic regression). The study resulted 66 respondents (63.5%) more easily achieved normalization and 38 respondents (36.5%) more difficult to achieve. There was a very significant correlation between severity of illness (p=0.000), parents education (p=0.006), parent income (p=0.002) and parental marital status (0.009) with normalization. While the age of the children, the length of time after diagnosis and social support were not significantly had correlation with normalization. The severity of illness was the most related factor to normalization (p= 0.001), followed by income (p=0.023) and parent education (p=0.047). Nurses have an important role in management of conditions appropriate to the severity of childhood illness, empower parents in searching for various family financial resources related to treatment, provide a proper understanding of the disease, the treatment regimen, help parents develop and use specific coping strategies in children illness management. Keywords: Children, Leukemia, Normalization, Parents.

Introduction Leukemia is a term for the malignancy of blood cells derived from the bone marrow and lymphatic system characterized by the proliferation of immature white blood cells (American Cancer Society, 2016; Hockenberry & Wilson, 2013). Leukemia is a common cancer in children, with a peak incidence in preschoolers (American Cancer Society, 2016; Hockenberry & Wilson, 2013). There are 29% of child cancers are leukemia (Siegel, Miller, & Jemal, 2017). In Indonesia, leukemia is the first sequence of cancer cases that are susceptible to children (Kemenkes RI, 2018). The number of events occurs most often in children under the age of 15 years (30-40%) (Simanjorang, Kodim & Tehuteru, 2013). Caring for children with leukemia has complexity due to the impact of the disease and its treatment, not only experienced by sick children but also the family as a whole. Cancer and its treatment have an impact on the health and functional status of children (Hockenberry & Wilson, 2015). Some health conditions found in children with leukemia include: children experience pain, lack of appetite, weakness, nausea, fever, hair changes and weight loss. In addition, children experience high levels of anxiety, show some symptoms of depression and complain that they cannot attend school (Duarlap & Altay, 2012; Li, Chung & Chiu, 2010; Olagunju, et al, 2016). These conditions can affect the quality of life of children. As many as 53% of cancer children reported experiencing poor quality of life (Nurhidayah, Hendrawati, Mediani & Adistie, 2016) that can disrupt the growth of children. Illness in children can affect the physical, emotional, intellectual, social and spiritual functions of the whole family. These impacts often result in changes in daily family activities. Parents are required to manage illness and child care and must continue to do household chores, balancing work activities, meeting the physical and emotional needs of other family members. Caring for children with chronic conditions has more energy, time and financial demands (Cousino & Hazen, 2013; Kaakinen, Duff, Coehlo & Hanson, 2010). The presence of leukemia and its treatment that affects children and families make parents adjust the changes that occur in the family. Most families with cancer children want children and their lives to be normal and manage their child's illness

(Deatrick, et al, 2006). Parents make various strategies to adapt to their child's illness by minimizing the impact of the disease on the family in order to appear as normal as normalized life may be known. Normalization is defined as one way to adapt to chronic illness, consisting of several good cognitive and behavioral strategies that are used to balance the needs of the family and sick children in order to live as close to normal family life (Knafl, Darney, Gallo, & Angst, 2010; & Rempel, 2011; Potts & Mandleco, 2012). Normalization aims to enable the family to achieve optimal functioning with minimal negative impact caused by illness for all family members (Knafl, Darney, Gallo, & Angst, 2010; Knafl & Deatrick, 2006). The ability of parents to achieve normalization is associated with better of family functioning (Knafl, Darney, Galo & Angst, 2010) that can improve the welfare of children and families as a whole (Lee & Rempel, 2011). This study uses the framework of Family Management Style (FMS) (Knafl, Deatrick, & Havil, 2012). The FMS framework is developed based on the concept of normalization. Using FMS in the study as an indicator of normalization and family function (Hines, 2011; Knafl & Deatrick, 2006; Knafl, Deatrick & Gallo, 2008; Rodgers & Knafl, 2000 in Hines, 2011). The FMSF consists of three components of normalization: how family members view the child and his illness (definition of the situation), behaviors used to manage conditions (management behavior), and views on the consequences of the child's condition on family life (perceived consequences) (Deatrick, et al, 2006, Hines, 2011; Knafl & Deatrick, 2006, Knafl, Deatrick & Gallo, 2008, Knafl, Deatrick, & Havil, 2012). Several factors in the FMS framework have an influence on how families define, manage and perceive the consequences of childhood diseases on the family (Deatrick, et al, 2006; Knafl, Deatrick, & Havil, 2012). Several studies have shown that several factors from children have a relationship with normalization, including age of the children (Hullmann et al., 2010; Toly, Musil, & Carl, 2012), severity of illness (Hines, 2011; MacDonald, 2010; Toly, Musil, & Carl, 2012) and the length of time after the child was diagnosed (Deatrick, et al, 2006). In addition to child factors, several studies mentioned the factors from parents who are associated with the management of childhood disease in achieving

normalization. These factors include are: parent education (Gage-Bouchard, Devin & Heckler, 2013, Zhang, et al, 2013), marital status of parents (Knafl, et al, 2013) and income (Gibson-Young, et al, 2014; Grinesky, 2008; Knafl, et al, 2013; Zhang, Wei, Shen & Zhang, 2015). Other another factors that can relate to the normalization of parents are social support (Fletcher, Schneider & Harry, 2010; O'neil, 2007). Currently research on normalization has never been done in Indonesia. There are differences on how parents define and manage leukemia diseases in children in Indonesia with in other countries. Handian (2015) in his research mentioned that leukemia in children perceived parents as a temptation from God. Parents accept the condition of their children gradually, then try and surrender to God. Culture of kinship and cooperation is an important element of support of care. Various health services are provided by the Indonesian government in support of child cancer care in Indonesia. Dr. Hasan Sadikin and RS AL Islam Bandung is one of the cancer referral hospitals in Bandung. Based on preliminary study that has been done in Dr. Hasan Sadikin (RSHS) and RS Al Islam (RSAI) Bandung showed that the total number of cases of childhood leukemia recorded in hospital medical records for one year (January 1 to December 31, 2017) as many as 369 children. Leukemia more suffered by children aged ≥3 (three) years with the number of each 169 children in RSHS and 122 children in RSAI Bandung. The results of interviews with three mothers of children who had been diagnosed with leukemia from different backgrounds said that one mother perceived the difference in a child with her peers because of the illness. Mother severely limits her child to play with her peers. Others see children as children of his age. Children can still join and play with children his age despite some limitations. One mother does not have a clear plan regarding her child care and feels pessimistic with her child's treatment. When there is worsening conditions with her child, mothers usually do not know how to cope. While others have a clear plan and hope for the healing of their children in the future. Usually the mother knows what to do when her child experiences worsening conditions. One mother feels difficult to share duties with partner in taking care of child. Sometimes mothers and couples

often quarrel because of differences of opinion in the care of children. While others feel the support of the couple and share in the task of child care. One mother feels the amount of effort and time needed to manage her child's condition, while others assume that the child's condition is less time-consuming and more manageable. One mother feels that dealing with her child's condition is very severe, often disrupting other family activities so that it is difficult to balance the family's life with the child's medication. Others try to adapt to the new changes and live their normal. Based on some data from the results of research that has been described previously, there are still some differences related factors associated with normalization in parents. Current factors associated with normalization in parents who have children aged 3-18 with leukemia in Bandung is not known. Knowledge of factors related to normalization in parents has an important role in identifying the difficulty of normalization experienced by parents and working together to identify strategies and resources to overcome them. The Nursing Intervention Classification identifies that the promotion of normalization is part of the nursing intervention that lists a number of specific strategies to help families achieve normalization (Bulechek, Butcher, Dochteman, & Wagner, 2013). Methods The research used correlational analysis with cross sectional approach. The independent variables in this study were age of children, length of time after diagnosis, severity of childhood illness, parent education, parent income, marital status of parent, social support. While the dependent variable is normalization in parents who have children aged 3-18 years with leukemia. The population of this study were parents who had children aged 3-18 years with leukemia in Dr. Hasan Sadikin and RS Al Islam Bandung. The sample in this research was 104 selected by using pursposive sampling method with inclusion criteria in this research are: 1) parents as primary carer in the family, 2) live one house with child 3) have cared for children with leukemia at least 3 months and 4) can reading and writing. While the exclusion criteria in this study are: 1) parents who have children with chronic diseases more than one and 2) parents who have children with leukemia with developmental delay.

Instruments used in the study are: 1) questionnaire of demographic data to know the characteristics of parents and children that contains: parents' last education, income and marital status of parents, child's birth date, the length of time the child was diagnosed with leukemia; 2) Family Management Measure (FaMM) from Knafl, et al (2011) for normalization measure, consists of six domains (child's daily life, conditions management ability, conditions management effort, family life difficulties , parental mutuality and views condition impact). Higher scores on three domains (child's daily life, conditions management ability, parental mutuality) suggest that families are more ease to achieve normalization. Higher scores on the other three domains (the effort of managing conditions, the difficulties of family life, views condition impact) suggest that family life are more difficult in achieving normalization (Hines, 2011; Knafl, et al, 2011); 3) Social support was measured using a Multidimensional Scale of Perceived Social Support (MSPSS) questionnaire from Zimet (1988; 2017). The MSPSS questionnaire is a self-report designed to assess a person's perceptions related to the extent to which parents feel supported by family, friends and meaningful people; 4) The severity of childhood illness was measured using a modification of the Severity of Illness Scale (SOIS) questionnaire from Young & Seleme (2001). The SOIS measurements used in this study filled by nurses or doctors. Results 1. Characteristics of Children Aged 3-18 with Leukemia in RS Al Islam and RS Dr. Hasan Sadikin Bandung Table 1

Characteristics of Children by Age, Severity of Illness and Duration of Time After Diagnosis in Bandung (n = 104)

Variabels Age of Children (years) Pre Schools (3-5 years) School Age (6-12 years) Adolescent (13-18 years) Severity of Illness Mild (< 16) Severe (> 16) Time After Diagnosis < 12 months > 12 months

f (%) 44 (42.3) 35 (33.7) 25 (24.0) 50 (48.1) 54 (51.9) 51 (49) 53 (51)

Based on Table 1 above, it is known that the majority of children are preschool aged (3-5 years) (42.3%). Children who have severe disease tend to be more (51.9%) than children with mild one (48.1%). Based on the length of time after diagnosis, more than half of children had been diagnosed with leukemia for> 12 months (51%). 2. Characteristics of Parents of Children Aged 3-18 with Leukemia in Al Islam Hospital and Dr. Hasan Sadikin Bandung Table 2

Characteristics of Parents by Education, Income, Marital Status and Social Support Perceived in Bandung (n = 104) Variabels

f (%)

Education Elementary (SD/SMP)

63 (60.6)

Intermediate (SMA/Sederajat)

33 (31.7)

High (Perguruan Tinggi)

8 (7.7)

Income < UMR (Rp. 2.250.000)

63 (60.6)

≥ UMR (Rp. 2.250.000)

41 (39.4)

Marital Status Not Married/Single Parent

14 (13.5)

Married

90 (86.5)

Social Support Low

0 (0)

Medium

12 (11.5)

High

92 (88.5)

Based on Table 4.2 above, it is known that the majority of parent education are elementary education (SD / SMP) (60.6%). Parent's majority income in category less than Rp. 2.250.000 or below UMR West Java (60.6%). Majority of parental marital status are married parents (86.5%). Social support perceived by parent majority are high (88.5%). 3. Normalization in Parents with Children 3-18 Years with Leukemia in Bandung Table 3 Normalization

Normalization in Parents of 3-18 Year Olds with Leukemia in Bandung (n = 104) f (%)

More ease

66 (63.5)

More difficult

38 (36.5)

Based on Table 4.2 above, it is found that most parents fall into the category easier to achieve normalization (63.5%). 4. Most Factors Related to Normalization in Parents Who Have Children 3-18 Years with Leukemia in Bandung Table 4

Analysis of Factors Related to Normalization in Parents of 3-18 Years Old Aged with Leukemia in Bandung (n = 104)

Normalization Ease

Variabels

Total

Difficult f %

f

%

f

%

Pre schools (3-5 years)

26

59,1

18

40,9

44

100

School Age(6-12 years)

24

68,6

11

31,4

35

100

Adolescent (13-18 years)

16

64,0

9

36,0

25

100

Mild (< 16)

41

82

9

18

50

100

Severe (> 16)

25

46,3

29

53,7

54

100

< 12 months

35

68,6

16

31,4

51

100

> 12 months

31

58,5

22

41,5

53

100

Elementary (SD - SMP)

33

52,4

30

47,6

63

100

Intermediate (SMA)

25

75,8

8

24,2

33

100

High (Perguruan Tinggi)

8

100

0

0

8

100

< UMR

32

50,8

31

49,2

63

100

> UMR

34

82,9

7

17,1

41

100

Not Married/single parents

4

28,6

10

71,4

14

100

Married

62

68,9

28

31,1

90

100

5

41,7

7

58,3

12

100

p-value

Age of Children (years) 0,684a)

Severity of Illness 0,000**b)

Time After Diagnosis 0,385b)

Parents Education 0,006**a)

Parents Income 0,002**b)

Parental Marital Status 0,009**b)

Social Support Medium High Note:

0,178

61 66,3 31 33,7 92 100 : a) Chi Square, b) Chi Square Continue Correction, *significant correlation p < 0,05, **very significant correlation p < 0,01

Based on Table 4 above, it is known that normalization of parents is not related to the three independent variables: children age, length of time after diagnosis and social support (p value> 0.05). While the other four variables

expressed to have a very significant correlation with the normalization of parents namely the severity, parental education, parental income and marital status (p <0.01). 5. Factors Most Associated with Normalization in Parents Who Have 3-18 Years Old Child with Leukemia in Bandung Table 5

Analysis of Most Factors Associated with Normalization in Parents of 3-18 Years Old Aged with Leukemia in Bandung (n = 104)

Dependent Variabels

B

Wald

p-value

OR (CI 95%)

X2 (Tingkat Keparahan)

1.840

11.653

0.001**

6.298 (2.189 – 18.117)

X4 (Pendidikan Orang tua)

-1.139

3.950

0.047*

0.32 (0.104 – 0.984)

X5 (Pendapatan Orang tua)

-1.472

5.197

0.023*

0.229 (0.065 – 0.813)

X6 (Status Pernikahan)

-1.375

3.684

0.055

0.253 (0.062 – 1.029)

X7 (Dukungan Sosial)

-1.302

2.346

0.126

0.272 (0.051 – 1.439)

Konstanta

6.350

3.761

0.052

Note: almost significant if p < 0,10, *significant if p < 0,05, **very significant if p < 0,01

From table 5 it can be seen that p values less than 0.01 (a very significant influence) are given by severity of illness (0.001). Judging from the value of Odd Ratio (OR) it, seen that the severity of severe illness can cause the difficulty of normalization as much as 6,298 times. Discussions The results of cross-tabulation in this study provide an illustration that parents who have preschool age children is one of the risk factors in efforts to achieve normalization in parents although statistically not correlated significantly. The existence of difficulties experienced by parents is likely due to the impact of disease and treatment of leukemia against preschoolers. In smaller children (preschool age) parents tend to have difficulty in involving children to manage the disease in accordance with its growth. Wollenhaupt, Rodgers, and Sawin (2012) mentioned that as children get older and become teenagers, their contribution to self-management in the management of chronic diseases can be very meaningful. Research conducted by (Barton, Sulaiman, Clarke, & Abramson, 2005) suggests that parents report "easier" when children are able to be involved in their care. The results are consistent with previous research conducted by Hines (2011) which shows that the age of the child is not related to the normalization in parents (p = 0:25> 0.05).Additionally, Knafl et al (2013) in his research shows that the age

of the child is not related to the management pattern of parents in managing their disease (p> 0.05) which shows that the age of the child is not related to the parent normalization. The absence of a relationship between the age of the child with the normalization of the parents may be due for an age range in this study was too far (3-18 years). This study did not homogenize so that the normalization in developmental age of the child is not specific. Results of cross tabulation is based on the severity of illness with normalization, the majority of parents who have children with severe illness tends to be more difficult to achieve normalization (53.7%). The results of the bivariate analysis showed that there is a relationship between the severity of the child's disease with normalization in parents, where relations between the two variables revealed highly significant (p = 0.000 <0.01). Several previous studies showed that the severity of the disease have normalized relations to the parents (Hines, 2011; Toly, Musil & Carl; 2012). Research Toly, Musil and Carl (2012) showed that there was a significant relationship between the severity of disease with normalization of parents (p <0.001). Hines (2011) in his research found that the severity of childhood diseases associated significantly with normalization in parents (p = 0.006 <0.01) in. Parents who have children with the severe illness difficulty in managing everyday childhood diseases so difficult to achieve normalization. There is evidence of the severity of illness associated with difficulties in achieving normalization in parent can be taken into consideration for nurses in providing care to children and families. Research conducted by Earle, Clarke, Eiser and Sheppard (2007) showed that the family felt compelled to be informed about the severity of illness and the treatment regimen and normalization efforts are possible and should be done by parents. It shows that the management of the condition of the child in accordance with the severity of illness is necessary so that families can achieve normalization. Based on the length of time after diagnosis, as many as 41.5% of parents who have children with leukemia diagnosis period longer than 12 months feel more difficult to achieve normalization. However, in this study did not produce statistically significant relationship between the normalization of parents with long

time after being diagnosed with leukemia.many parents who have children with the diagnosis period of more than 12 months has been difficult to achieve normalization likely due to the child suffered a recurrence or complications of the disease and treatment. O'neil (2007) stated in his research that the majority of chronic disease, longer time since diagnosis in accordance with the development of more severe symptoms or complications of the disease, medication, or both. Another possibility of difficulty in achieving normalization of the parents who have children with leukemia more than 12 months due to the phase of treatment in children. The case studies conducted by Olge (2006) showed that parents who have children with cancer, the efforts of parents to manage their children cancer depends on many different circumstances including the diagnosis and treatment phases of childhood cancer. When the child's condition, diagnosis and treatment phases is more complex children, parents tend difficulties in achieving normalization. This reseach contradict with previous studies in which the length of time after diagnosis related to the normalization (Murphy 1994 Toly, 2009). Parents who have children with the diagnosis period of more than 12 months showed the ease in achieving normalization. In addition, this study also contrary to previous literature that says that at the beginning of treatment, parents who have children with cancer have difficulty managing their condition (Deatrick, et al, 2006) making it difficult to achieve normalization. Results of cross tabulation table known that elderly people with basic education levels have difficulty achieving the normalization of 47.6%. In bivariate analysis, there is a highly significant relationship between parents' education with the normalization of the parents who have children with leukemia (p = 0.006 <0.01). The difficulty of normalization in parents based on the educational background likely due to differences in the use of planning and coping style of parents. The level of parental education is positively related to the use of planning and active coping style. Parents with lower education to use coping and planning lower (Gage-Bouchard, Devin & Heckler, 2013). This can lead to parents having difficulty in managing childhood diseases and achieving normalization, because normalization is an effective coping mechanism related to adaptation to the families

who have children with chronic diseases (Knafl, Darney, Galo & Angst, 2010). Highly educated parents devote his ability to make decisions in the search for child health care compared with less educated parents (Balling & McCubbin, 2001 in Zhang, Wei, Shen and Zhang, 2015). This study is in line with research conducted by Gage-Bouchard, Devin, and Heckler (2013) which shows that the education level of parents affects children's parenting style after cancer diagnosis. Another study carried out in line with the study by Zhang Wei, Shen and Zhang (2015). The study results showed that parental education related to the ability of parents to manage their children's disease which is one of the domains of normalization (p = 0.001). Highly educated parents who show the ability to manage their disease. The results in this study contradicts the previous research conducted by Knafl, et al (2013). In that study, parental education does not relate to the management of the family to childhood diseases. Differences in results with these studies is likely due to differences in the study sample where most of the samples in this study only completed primary education, while the level of education in developed countries is higher than in Indonesia. Based on the parents' income, the result of cross tabulation table shows that as many as 49.2% of parents with incomes below the minimum wage showed more difficult to achieve normalization. This value is larger when compared to the parental income above the minimum wage is as much as 17.1%. In bivariate analysis, there is a highly significant relationship between income parents with normalization (p = 0.002 <0.01). Parents on low incomes find many obstacles in the management of childhood diseases every day. In low-income families, the obstacles in the management of childhood illnesses among others, lack of health insurance and /or private transport and the cost of insurance usage (Grinesky, 2008).Family income has an influence on the adaptation and family coping against the child's condition (Grinesky 2008; Gannoni & Shute, 2009). The results are consistent with previous research conducted by GibsonYoung, et al (2014), Knafl, et al (2013) and Zhang Wei, Shen and Zhang (2015). Most parents with low incomes are in the pattern of management of childhood

diseases that show difficulties in achieving normalization and statistically correlated highly significant (p <0.01) in (Knafl, et al, 2013). In addition, revenue statistically associated with the difficulties of life domain family (p <0.001) (Zhang, Wei, Shen and Zhang, 2015) and the ability of management of the condition (p <0.001) (Gibson-Young, et al, 2014; Zhang Wei, Shen and Zhang, 2015) which is the domain in the achievement of normalization. Based on the marital status of parents, the results of the cross tabulation table shows that as many as 71.4% single parents is more difficult to achieve normalization. Based on bivariate analysis, there is a highly significant relationship between marital status of parents with normalization (p = 0.009 <0.01). The difficulties experienced by single parents in achieving normalization may be caused by lack of support received for administering the child's illness. Single parents experiencing difficulties caused by a lack of support received both morally and materially in caring for a sick children (Crosier, Butterworth, & Rodgers, 2007;Mullins, et al, 2011; Wiener, et al, 2014; Rosenberg-Yunger et al., 2013). The condition causes the single parent are more likely to experience poor mental health (Crosier, Butterworth, & Rodgers, 2007), The level of vulnerability and pressure (Mullins, et al, 2011) which is higher when compared with parents who are married, so that it can have an impact on the normalization effort in the management of childhood illnesses. This study is in line with research conducted by Knafl, et al (2013) which shows the results of that single mothers are significantly more likely to be on the pattern of family management that reflect more difficulties in managing childhood diseases so that difficulties in achieving normalization. While in some previous quantitative studies not conducted studies on normalizing relations with the marital status of parents (Hines, 2011; Toly, Musil & Carl, 2012). Based social support, cross tabulation table results show that parents who have social support were less likely to achieve normalization (58.3%). However, based on bivariate analysis, relations between the two variables declared not significant (p = 0.178 <0.05). Sources of support identified in this study obtained from the nearest person, friends and family who acquired the parents based on the results of social

interaction. Most parents have high support (88.5%). It shows that the parents feel that the high support from significant others, friends and family. The high support due to their kinship and mutual assistance in Indonesia, which is a critical element supporting child care. During the ill child, the parents who have children with leukemia solve problems by using the support of external (Handian, 2015). The high support obtained by the parents in this study did not show a significant association in helping parents to achieve normalization. Social support from other sources such as from a professional is required to assist families in caring for children with leukemia. In addition, the lack of correlation in this study due to external social support obtained from the parents. Factor derived from the internal parents, children, and family is the most important thing that is shown in this research, evidenced by the results of research that shows that parental education, income, marital status and the severity of the children in this study show the relationship highly significant (p <0:01). The study also contrary to research conducted Fletcher, Schneider and Harry (2010) which shows that the support can affect the ability of the parent (mother) who have children with cancer to cope with his illness. All parents expressed the importance of having support. The presence of a support system allows parents to improve their ability to care for children with cancer. System support they get is from family, friends, same patients and health workers. Differences with the research results is due to the different research methods to the study, which is qualitative. In multivariate factors most related to the normalization of the parents and showed the most significant associations (p <0.01) in given by the severity of the illness (p = 0.001). Judging from the value of Odd Ratio (OR) it, the severity of the disease likely to cause difficulties more severe in the parents normalization of 6.298 times compared with children who experience mild severity of illness. That is, difficulties in achieving normalization in parents tend to be more likely to occur in children who have a severe illness. Parents who have children with severe illness and complexity of treatment in this study are likely to experience difficulty forming daily routine which is balanced with the child's treatment regimen. Research conducted Toly (2009)

showed that the functional status of children will determine how many family lifestyle may be restricted because of a bit of space to balance the flexibility of care with management behavior condition is an important component of normalization. The severity of childhood illness affect the definition of parents about a situation which impacts on behavior management and the effect on the achievement of normalization. Knafl and Deatrick (2002) found that when the poor child illness conditions, normalization is difficult to occur even in older people who describe themselves as competent and confident in caring for and managing childhood diseases. Severe condition in children make the management of disease burden and become the focus of family life. Conversely, when the conditions improved disease or to be more controlled, parents increase efforts to normalize them. Thus, disease management will be easier to do and become part of daily family routines so that efforts to normalize the increased, Conclusions and recommendations Conclusion Based on the results of research conducted conclusions can be drawn as follows: 1.

These results indicate there is a significant relationship between the severity of the child's illness, parental education, parental income and marital status of parents with normalization in parents. While the three other variables (age, length of time after diagnosis and perceived social support parents) did not show any significant relationship.

2.

Mostfactors associated with the normalization of the parents based on the p value and Odd Ratio (OR) successively is the severity of the child's illness, parental income, parental education and marital status of parents.

Suggestion 1. For Nursing Care 1) Nurses can work together with parents in an effort management suitable conditions by severity of illness of children with planning specific strategies to help families achieve normalization, Including: adapt to the child's treatment regimen according to severity of children, providing opportunities for children

to have the experience of childhood in accordance with the growth, help families adjust the therapeutic regimen adjusted to the conditions of the family. 2) Give emotional support, instilling hope for the future is more optimistic by empowering parents to find different sources of treatment-related family financially, whether provided by government or private foundations such as the use of BPJS and cancer. 3) Being an educator or consultant to support parents by providing proper knowledge about the disease and treatment regimen followed, providing information on health beliefs (health belief) that correspond to the behavior of the management of childhood diseases are advised and encourage parents to engage in such behavior. 4) Helping parents to take advantage of available resources and seek other resources that exist outside of the parents in managing children with leukemia such as foundations, fellow parents who have children with leukemia and other support groups. 2. For Hospital To disseminate the importance of normalization assessment for parents who have children with leukemia to see effective management of the disease by the family in providing nursing care to parents who have a child with leukemia 3. For Further Research Future studies need to dig deeper normalization related to parents who have children with leukemia through a homogeneous approach with respondents age more is specified to one of the roles of parents (father or mother). Bibliography American Academy of Pediatrics. (2012). Patient and Family-Centered Care and the Pediatrician’s Role. Pediatrics. www.pediatrics.org/cgi/doi/10.1542/peds.2011-3084 doi:10.1542/peds.2011-3084 American Cancer Society, 2016. Leukemia in Children. https://www.cancer.org/cancer/leukemia-in-children.html Barton, C., Sulaiman, N., Clarke, D., & Abramson, M. (2005). Experiences of Australian parents caring for children with asthma: It gets easier. Chronic Illness, 1, 303-314. doi: 10.117/17423933650010041201

Bulechek,G. M., Butcher, H. K., Dochterman, J. M & Wagner, C. (2013). Nursing Intervention Classification (NIC) 6th edition. Saint louise Missouri: Elsevier Causino, M. K & Hazen, R. A. (2013). Parenting Stress Among Caregivers of Children with Chronic Illness: A Systematic Review. Journal of Pediatric Psychology 38(8) pp. 809–828, 2013 doi:10.1093/jpepsy/jst049 Crosier, T., Butterworth, P & Rodgers, B. (2007). Mental health problems among single and partnered mothers The role of financial hardship and social support. Soc Psychiatry Psychiatr Epidemiol: 42:6–13 DOI 10.1007/s00127-006-0125-4 Deatrick, J. A., Thibodeaux, A. G., Mooney, K, Schmus, C., Pollack, R & Davey, B. H. (2006). Family management style framework: a new tool with potential to assess families who have children with brain tumors. Journal of Pediatric Oncology Nursing, Vol 23, No 1, p 19-27. Duarlap, E & Altay, N. (2012). A Comparison of Emotional Indicators and Depressive Symptom Levels of School-Age Children with and Without Cancer. Journal of Pediatric Oncology Nursing 29(4) 232 –239 Earle, E. A., Clarke, S. A., Eiser, C., & Sheppard, L. (2007). Building a new normality: mothers’ experiences of caring for a child with acute lymphoblastic leukemia. Child Care Health & Development (33)155–160 Fletcher, P. C., Schneider, M. A & Harry, R, J. (2010). How do I cope? Factors affecting mothers’ abilities to cope with pediatric cancer. Journal of Pediatric Oncology Nursing 27(5) 285 –298. Gage-Bouchard, E. A. G., Devine, K. A & Heckler, C. E. (2013). The relationship between socio-demographic characteristics, family environment, and caregiver coping in families of children with cancer. J Clin Psychol Med Settings; 20(4): . doi:10.1007/s10880-013-9362-3. Gannoni, A. F & Shute, R. H. (2009). Parental and Child Perspectives on Adaptation to Childhood Chronic Illness: The Qualitative Study: Clinical Child Psychology and Psychiatry, 15, 39-53. Gibson-Young, L., Turner-Hensen, A., Gerald, L. B., Vence, D. E & Lozan, D. (2015). The Relationships Amongs Family Management Behaviours and Atshma Morbidity in Maternal Caregiver of Children with Atshma. Journal of Family Nursing, Vol. 20(4) 442-461 Grineski, S. (2008). Coping with asthma in the central city: parental experiences with children's health care. Journal of Health Care for the Poor and Underserved, 19, 227–236 Handian, I. F. (2015). Peran Orang Tua dalam Merawat Anak dengan Leukemia Limfoblastik Akut (LLA). Tesis. Universitas Gajah Mada Hines, A. (2011). Parental Perceptions of Family Management Styles in Families with a Child with Asthma. Dissertation. Faculty of The Graduate School at The University of North Carolina at Greensboro Hockenberry, M.J & Wilson, D. (2015). Nursing Care of Infants and Children. 10th Edition. St. Louise Missouri : Elsevier Hullmann, S. E.,Wolfe-Christensen, C., Ryan, J. L., Fedele, D. A., Rambo, P. L., Chaney, J. M., et al. (2010). Parental overprotection, perceived child

vulnerability, and parenting stress: A cross-illness comparison. Journal of Clinical Psychology in Medical Settings, 17, 357–365. Kaakinen, J. W., Duff, V. G., Coehlo, D. P & Hanson, S. M. H. (2010). Family Health Nursing. 4th Edition. Philadelphia: F. A. Davis Company. Knafl, K, A., Darney, B.G., Gallo, A. M., & Angst, D.B. (2010). Parental perceptions of the outcome and meaning of normalization. Reseach in Nursing & Health, 33, 87-98 Knafl, K. A., Deatrick, J. A. (2002). The Challenge of Normalization for Families of Children with Chronic Condition. Journal of Pediatric Nursing, 5(1), 414 Knafl, K. A., Deatrick, J. A & Gallo, A. M. (2008). The interplay of concept, data, and methods in the development of the family management style framework. J Fam Nurs. 14(4): 412–428. doi:10.1177/1074840708327138. Knafl, K. A., Deatrick, J. A., Gallo, A., Dixon, J., Grey., Knafl, G., & O’Malley, J. (2011). Assessment of the psychometric properties of the family management measure. Journal of Pediatric Psychology 36(5) pp. 494–505 Knafl, K. A., Deatrick, J. A & Havill, N. L. (2012). Continued development of the family management style framework. Journal of Family Nursing 18(1) 11 –34 Knafl, K. A., Deatrick, J. A., Knafl, G. J., Gallo, A. M., Grey, M., & Dixon, J. (2013). Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs.; 28(6): 523–535. doi:10.1016/j.pedn.2013.03.006 Lee, A & Rempel, G. R. (2011). Parenting children with hypoplastic left heart syndrome: Finding a balance. Journal for Specialists in Pediatric Nursing 16: 179–189 Li, H. W. C. W., Chung, O. K. J & Chiu, S. Y. (2010). The Impact of Cancer on Children’s Physical, Emotional, and Psychosocial Well-being. Cancer NursingTM, Vol. 33, No. 1 Mullins, L. L, Wolfe-Christensen, C., Chaney, J. M, Elkin, D, Wiener, L, Hullmann, S.E., Fedele, M.S., Junghans, A. (2011). The relationship between single-parent status and parenting capacities in mothers of youth with chronic health conditions: The mediating role of income. Journal of Pediatric Psychology, Volume 36, Issue 3, Pages 249– 257,https://doi.org/10.1093/jpepsy/jsq080 Nurhidayah, I., Hendrawati, S., Mediani, H. S & Adistie, F. (2016). Kualitas Hidup pada Anak dengan Kanker. JKP Unpad Volume 4 Nomor 1 April Nursalam. (2013). Metodologi Penelitian Ilmu Keperawatan. Jakarta: Salemba Medika Olagunju, A. T., Sarimiye, F. O., Olagunju, T. O, Habeebu, M. Y. M & Olatunji Aina, O. F. (2016). Child’s symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care. Ann Palliat Med;5(3):157-165 O’Neil, C.A.S. (2007). The Development of the Normalization Assesment Measure : Dissertation. Nashville, Tennessee : Graduate School of Vanderbilt University Potts, N.L & Mandleco. (2012). Pediatric Nursing Caring for Children and Their Family. (3rd ed). USA: Delmar Chengage Learning

Rosenberg-Yunger, Z. R. S., Granek, L, Sung, L., Klaassen, R., Dix, D, Cairney, J & Klassen, A. F. (2013). Single-Parent Caregivers of Children with Cancer: Factors Assisting with Caregiving Strains. Journal of Pediatric Oncology Nursing 30(1) 45 –55. Siegel, R.L., Miller, K.D., & Jemal, A. (2017). Cancer statistic 2017. CA: Cancer Journal for Clinicians ; 67 : 7-30 Simanjorang, C, Kodim, N & Tehuteru, E. (2013). Perbedaan Kesintasan 5 Tahun Pasien Leukemia Limfoblastik Akut dan Leukemia Mieloblastik Akut pada Anak di Rumah Sakit Kanker “Dharmais”, Jakarta, 1997-2008. Indonesian Journal of Cancer Vol. 7, No. 1 Toly, V.A.B. (2009). Normalization and Family Functioning in Families with a Child who is Technology Dependent. Dissertation. Frances Payne Bolton School of Nursing Toly, V.A.B., Musil, C.M & Carl, J. C. (2012). Families With Children Who Are Technology-Dependent: Normalization and Family Functioning. West J Nurs Res . 2012 February ; 34(1): 52–71. doi:10.1177/0193945910389623 Wollenhaupt, J., Rodgers, B., & Sawin, K. J. (2012). Family management of a chronic health condition: Perspectives of adolescents. Journal of Family Nursing, 18, 65-90. Wiener L, Pao M, Battles H, Zadeh S, Patenaude A, Madan-Swain A, Kupst MJ. (2014). Socio-environmental factors associated with lone parenting chronically ill children. Child Health Care; 42:265– 280. Young-Saleme, T. K & Prevatt, F. (2001). Brief report: psychometric evaluation of the severity of illness scale in a pediatric oncology sample. Journal of Pediatric Psychology Vol 26 No. 1, pp 55-60 Zhang, Y., Wei, M., Shen, N & Zhang, Y. (2015). Identifying Factors Related to Family Management During the Coping Process of Families with Chilhood Chronic Condition: A Multi-Site Study. Journal of Pediatric Nursing, No. 30, 160-173 Zhang, Y., Wei, M., Han, H., Zhang, Y & Shen, N. (2013). Testing the Applicability of the Family Management Style Framework to Chinese Families. Western Journal of Nursing Research 35(7) 920 –942 Zimet, G. D., Dahlem, N. W., Zimet, S. G & Farley, G. K. (1988). The Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment 1988;52:30-41. Zimet, G. D., Dahlem, N. W., Zimet, S. G & Farley, G. K. (2017). The Multidimensional Scale of Perceived Social Support. http://gzimet.wixsite.com/mspss