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: nursyamsiyahurfa@gmail.com

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: nursyamsiyahurfa@gmail.com

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 f (%)
Age of Children (years)
Pre Schools (3-5 years) 44 (42.3)
School Age (6-12 years) 35 (33.7)
Adolescent (13-18 years) 25 (24.0)
Severity of Illness
Mild (< 16) 50 (48.1)
Severe (> 16) 54 (51.9)
Time After Diagnosis
< 12 months 51 (49)
> 12 months 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 in Parents of 3-18 Year Olds with Leukemia in
Bandung (n = 104)
Normalization 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
Total
Variabels Ease Difficult p-value
f % f % f %
Age of Children (years)
Pre schools (3-5 years) 26 59,1 18 40,9 44 100 0,684a)
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
Severity of Illness
Mild (< 16) 41 82 9 18 50 100 0,000**b)
Severe (> 16) 25 46,3 29 53,7 54 100
Time After Diagnosis
< 12 months 35 68,6 0,385b)
16 31,4 51 100
> 12 months 31 58,5 22 41,5 53 100
Parents Education
Elementary (SD - SMP) 33 52,4 30 47,6 63 100 0,006**a)
Intermediate (SMA) 25 75,8 8 24,2 33 100
High (Perguruan Tinggi) 8 100 0 0 8 100
Parents Income
< UMR 32 50,8 31 49,2 63 100 0,002**b)
> UMR 34 82,9 7 17,1 41 100
Parental Marital Status
Not Married/single parents 4 28,6 0,009**b)
10 71,4 14 100
Married 62 68,9 28 31,1 90 100
Social Support
Medium 5 41,7 0,178
7 58,3 12 100
High 61 66,3 31 33,7 92 100
Note: : 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 Gibson-
Young, 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).
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