Introduction
Cancer is considered one of the most important health
problems today and the cases are increasing in the
world and our country.[] Childhood cancers are
among the most second common causes of death in developed
countries, while it is the third cause of mortality
in children in Turkey.[-] In an international study conducted by the International Association of Cancer
Registries (2017), in 62 countries, it was noted that
the childhood cancer rate increased 13% in the period
2001-2010 compared to the 1980s.[] The 5-year survival
rates of children and adolescents diagnosed with
cancer in high-income countries were approximately
80-84%, this ratio was 70.8% for Turkey with the advances
in treatment in recent years.[,] Treatment educasuccess
and an increase in life expectancy caused family
members to actively participate in the care process
and take more responsibility.[]
Being diagnosed with cancer for a child creates a
very stressful situation for both children and their parents.[] Children with cancer require special care and
support because of their developmental features.[,]
In the child and family, stress, and anxiety begin immediately
after diagnosis and continues all of the treatments
stages.[,] It is reported that parents who have
children with cancer be more likely to have psychological
problems such as anxiety, depression, and stress
compared with parents of healthy children.[,]
Cancer lead to significant social, physical, economic,
and emotional burdens[] which are characterized
by persistent worry, stress, or negative experiences.[] The burdens for families are categorized as
financial needs, work activities, communicating with
the siblings of the ill child, dealing with the reactions
of others, and concerns about the future of the child.
[,] Frequent surgeries, medical visits, adverse effects,
and the risk of infection all may lead to mothers"
psychological distress and increasing their care burden.[-] The daily life and routines of the family
members who care for the child with cancer are affected
seriously and may result in loss of roles in the
family members.[,] In the literature, it is stated
that primer caregivers experience emotional, cognitive,
physical, social, and financial problems and these problems
increase the burden of caregivers and decrease
their quality of life.[,,]
The care of the patients is usually carried out by
their families, especially mothers, and this is perceived
as a family responsibility in Turkey.[] It was found in
a studies that the mothers who played a primary role in
treatment experienced more pain, anxiety, and depression
than fathers.[,] Family members are trying to
cope with their complications and also trying to provide
support and care for their children with cancer.[]
Children also need their mothers more in the process
of treatment and care.[] For this reason, mothers are
often the primary caregivers and most of the disease
and the burden of care of the children are placed on
mothers.[] These burnout and difficulties affect both
the mothers and the children negatively.[,] After a
while, mothers experience loss of role, inability to care
for their other children, inability to maintain daily
life activities, deterioration in the quality of life, and
various psychological problems.[] The child's caregivers
experience difficulties and burnouts in the care
and treatment process.[] In this process, nurses and health professionals have important roles for supporting
and understanding the effects of caring for children
with cancer on caregivers and implementing planned
education to reduce these negative emotions.[] This
study was conducted to determine the relationship
between the care burden, anxiety, and social support
levels of the mothers of the children with cancer, and
affecting factors.
Study Questions
• What is the level of care burden of mothers?
• What is the anxiety level of the mothers?
• What is the level of perceived social support of
mothers?
• Is there a relationship between the care burden,
anxiety levels, and perceived social support levels of
the mothers?
Methods
This descriptive study was carried out in a university
hospital in Turkey, Pediatric Hematology-Oncology
clinic between October 20, 2018, and January 20, 2019.
The hospital is the largest university hospital in the
Thrace Region and is a 20-bed clinic.
Sample and Recruitment
The study subjects were mothers of children with cancer
who were treated in pediatrics clinics at a university
hospital. In the study, Köse et al.,[] the number of
samples was calculated by using the "Beck Anxiety Inventory
(BAI)" score average of their study with caregivers.
The sample size of the study was determined by
a computer program (G-Power 3.1 version).[] In this
program, the required sample number was found to be
51 in the calculation with 0.80 power, 95% reliability,
and 0.60 effect size according to the study by Köse et
al. Considering the inclusion and exclusion criteria of
the study, the study was completed with 43 mothers
(response rate: 84.31%) because four mothers were not
willing to study and four mothers filled the questionnaires
incompletely.
Mothers were eligible for selection if: Their child
was diagnosed at least 1 month before the study, (2)
chemotherapy or radiotherapy had started, and (3) the
mothers were the direct caregivers.
Research Variables
Independent variables of the research; socio-demographic
characteristics of children and parents (age,
gender, family structure, employment status, educational level, place of residence, number of children,
presence of other children with chronic disease, support
status about the child care, household chores, etc.);
dependent variables are; mean scores of the "Zarit Burden
Interview (ZBI)," "BAI," and "Multidimensional
Perceived Social Support Scale (MPSSS)."
Data Collection Procedure
During the data collection period, the researchers interviewed
the pediatric oncology clinic staff every day
and evaluated them within the scope of the families"
inclusion criteria. Mothers who met the sample selection
criteria first met the researchers and after a safe
relationship was established, the parent was informed
about the research. Written permission was obtained
from mothers who volunteered to participate in the
study. The data were collected in the interview room
in the service for mothers to feel comfortable. The data
were collected based on the self-report of the mothers
through the face-to-face interview method. Data collection
took approximately 10-15 min for each participant.
Research Instruments
The data were collected with "Information Form,"
"ZBI," "BAI," and "MPSSS."
Information Form
The form was prepared by the researchers in line with
the literature.[,,] The form consists of 22 questions,
15 questions including socio-demographic characteristics
of children and parents (age, gender, family
structure, employment status, education level, income
status, place of residence, number of children, presence
of other children with chronic disease, etc.) and seven
questions about parents" home care burden, anxiety,
and social support status (support status about the
child care and household chores, whom they get, etc.).
ZBI
The scale was developed by Zarit et al.[] in 1980. Its
Turkish validity and reliability study was performed by
Inci and Erdem (2008) and the Cronbach alpha value
is in the range of 0.87-0.99.[] In the current study,
the Cronbach's α reliability coefficient of this scale was
0.84. The scale consists of 22 items to determine the effect
of caregiving on the life of the caregiver. Each item
is a 4-point Likert-type scale that changes to never (0),
rarely (1), sometimes (2), often (3), or almost always
(4). The minimum score is "0" point and maximum
score is "88" point; "0-20" point is less burden, "21-40" point is a medium burden, "41-60" point is a high burden,
and "61-88" point is an extreme burden.
BAI
BAI was developed in 1988 by Beck et al.[] Its Turkish
validity and reliability were done by Ulusoy et al.[]
and Cronbach"s alpha value was found to be 0.92. In the
current study, the Cronbach's α reliability coefficient of
this scale was 0.79. This scale is a self-report measure of
anxiety. BAI which is a Likert-type scale includes a total
of 21 somatic and cognitive anxiety symptoms, and
the score range is graded between 0 and 3 points, with
low, moderate, and high responses. 8-15 points are determined
as a low-level anxiety, 16-25 points are moderate-
level anxiety, and 26-63 points are determined as
score ranges that meet high-level anxiety symptoms.
The maximum score that can be obtained from the
scale is 63.
MPSSS
It was developed by Zimet et al.[34] in 1988 and its validity
and reliability study was carried out in 1995 by
Eker et al.[] The scale consists of 12 items in total.
The scale is a 7-point Likert-type scale with the form of
"Absolutely Yes/No." Three subgroups reflect the support
resources of the scale: Family, friend, and private
person support, and each subgroup consists of 4 items
and the reliability scores are 0.89 on the whole scale and
0.85 on the subgroups. Items 3, 4, 8, and 11 in the scale
measure family support, 6, 7, 9, and 12 items measure
friend support, and 1, 2, 5, and 10 items measure private
person support. The lowest score that can be obtained
from the subscales is 4, and the highest score is
28. The lowest score that can be obtained from the total
scale score obtained by adding the scores obtained
from the subscales is 12, and the highest score is 84. The
scale does not have a cutoff point, and the high score
obtained from the scale indicates that perceived social
support is also high. In the current study, the Cronbach's
? reliability coefficient of this scale was 0.95.
Ethical Approach
The Institutional Ethical Committee of the hospital
approved the study (approval number: 19/09, date:
19.11.2018). The purpose of the research was explained
to the mothers and children before the questionnaire
and scales were distributed. Mothers were informed
that they do not write names on the form and scales
and that the data obtained will be used for only scientific
purposes and verbal and written consent was obtained
from them.
Data Analysis
Statistical Package for the Social Sciences (SPSS) version
20.0 (IBM SPSS Corp.; Armonk, NY, USA) statistical
program was used to analyze the data. The sociodemographic
characteristics of mothers and children,
data on mothers" home care burden, anxiety, and social
support status were evaluated by number, percentage,
mean, and standard deviation. To examine the normality
of the distribution of the data, the Kolmogorov-
Smirnov test was applied. The parametric analysis
methods were used for data analysis. The relationships
between the socio-demographic characteristics of
children and mothers (age, gender, number of children,
presence of other children with chronic disease,
etc.) and the total and sub-dimensions mean scores of
"ZBI," "BAI," and "MPSSS" were analyzed with Student"s
t-test. Relationships between scale scores were
evaluated by Pearson correlation analysis. The results
were evaluated at a 95% confidence interval and p<0.05
significance level.
Results
The mean age of the mothers was 37.46±9.67 years old
and the mean age of children was 10.12±5.28 years old
and 58.1% of the children were girls. The mean number
of children was 2.11±0.87 in the family. Children's
mean of cancer treatment duration was 10.57±12.59
months and 60.5% of the children were receiving
chemotherapy treatment, also 95% of the children in
the remission term. It was found that mothers were
primary caregiver of the children (83.7%), and 55.8%
of mothers received support from their husband for
children" care. The mothers" 76.7% stated that their social
life was changed, 20.9% of them stated that they received
support related to household chores, and 34.9%
of them had any disease.
The mean total score of the BAI of the mothers was
20.62±15.74 and 37.2% of mothers had high levels of
anxiety. The mean total score of the ZBI of the mothers
was 29.83±20.92. The mean total score of the MPSSS of
the mothers was 56.83±22.06, "family" sub-dimension
mean score was 20.62±7.65, "friend" sub-dimension
mean score was 18.69±8.67, and "private person" subdimension
mean score 17.51±8.49 was found (Table 1).
Table 1: Distribution of mothers" BAI, ZBI, and MPSSS
total and sub-dimension mean scores (n=43)
There was a significant difference between the
mothers" status of change in the social lives and their
BAI total score averages (t=4.454; p<0.001) and the
mean score of the ZBI (t=3.259; p=0.003). Mothers
who report their social life was changed had higher
anxiety levels and caregiver burden (Table 2).
Table 2: The comparison of some characteristics of
mothers and children with total mean scores
and sub-dimension scores of BAI, ZBI, and
MPSSS (n=43)
There was a significant difference between the
mothers" getting help at household chores and their
total mean scores of the ZBI (t=0.864; p=0.018). The
caregiving burden of mothers who did not receive help
at household chores was higher (Table 2).
A moderate positive correlation was found between
the total scores of BAI and ZBI of mothers (r=0.508;
p=0.001). As mothers" anxiety increased, caregiver
burden also increased (Table 3).
Table 3: The relationship between total and sub-dimension
scores of ZBI, BAI and MPSSS of mothers
(n=43)
There was no statistically significant correlation between
the ZBI and MPSSS scores of mothers. Furthermore,
there was no statistically significant correlation between the duration of cancer treatment of the children
and total mean scores of ZBI, MPSSS, and BAI
(p>0.05) (Table 3).
Discussion
Children with cancer need more mothers to meet
their needs and take care of them during the cancer
treatment process.[] Therefore, it is the mother who
experiences more challenges and who is most affected
by the treatment phase and as well as the cancer care
process for the child.[] In the literature, the care burden
and psychosocial problems of pediatric oncology
patients" mothers are generally examined as descriptive
and qualitative studies.[-] In the literature,
the care burden, psychosocial problems, and support
system experienced by mothers who had children with
cancer were examined separately.[,,] There are
limitations in this studies that explain how these variables
affect each other. Therefore, this study was conducted
to determine the relationship between the care
burden, anxiety, and social support levels of the mothers
of children with cancer and affecting factors.
The incidence of childhood cancers is increasing
rapidly in the world.[] The long course of treatment
affects both families and children negatively.
[] In Turkey, it is usually allowed the mothers to
stay with their children in the oncology clinic. As
primary caregivers are mothers so, their anxiety,
stress, anxiety, care burden are more than other family members.[] In this study, it was determined that
37.2% of mothers had high anxiety level, the mean
total score of the ZBI, and the MPSSS of the mothers
showed that mother's had moderate care burden,
and moderate perceived social support, and mothers
mostly receive social support from their families
(Table 1). In the literature, similar to these findings, it
is seen that the level of social support of the mother
is moderate and they received social support mostly
from their families.[,,] In a study conducted by
Baran, the mothers who had children with acute lymphoblastic
leukemia (ALL) had high care burden.[]
van Warmerdam et al.[] conduct a meta-analysis to
determine the prevalence of psychological problems
in parents children with cancer and they found that
parents of the children with cancer show a greater
incidence of anxiety. It can be said that childhood
cancer not only affects children but also all the family
members: Parents, well siblings, and others members.[] According to the research results, primer
caregiver especially mothers experiences more stress,
anxiety, and care burden than other family members.
[-,] It is very important for mothers need to be
supported by their families and health professionals
to reduce the care burden and negative feelings that
they experience.[] Health professionals who spend
the most time with mothers in hospitals are nurses.
Nurses have important roles in guiding mothers to
cope with their negative emotions.[] The literature
suggests that nurses plan the care of the child together
with their parents, creating environments where parents
will feel comfortable, informing families during
and after treatment, and actively involve the family in
the entire care of the child.[-] These nursing interventions
should be implemented for reducing the
mother's anxiety and care burden's level.
One of the important results of this study is that
mothers who report changes in social life had a high
score of the anxiety and care burden (Table 2). This
result is consistent of the literature. Chiou et al.[]
found that cancer caregivers who received social support
had a low level of care burden and the care burden
decreased as perceived social support increased.
The child being diagnosed with cancer does not only
change the life of the child but also the routine life and
responsibilities of caregivers.[] The mothers are often
depressed and isolated because of the treatment and
the care burden of the disease and therefore restrict relationships
within their environments.[] These problems
may continue for a few years.[] According to
the Theory of Human Ecology, people's environment and social supports play an important role in their responses
to stressors.[] According to this theory, if the
mothers of children with cancer are socially supported,
their psychological problems and care burdens can be
reduced.[] Furthermore, social interaction is a cultural
component that has the effect of reducing parents"
distress, care burden, and anxiety.[]
In a recent study, it was found that the care burden
of mothers who did not receive help at chores was
high (Table 2). This finding consisted of the literature.
Wang et al.[] explored that care burden among parents
of children with ALL and it was found that parents
with low care burden tend to have more time for
daily care, more co-caregivers, higher incomes, less
depression, better emotional well-being, and social
support. Caregivers are usually responsible for about
80% of the duties that were performed by health professionals
(e.g., side effects control, and late medication
effects), in addition to their personal responsibilities.[] In this process, when mothers cannot get
help from anyone, the burden of care increases.[] In
the literature, it was reported that many of the treatments
are provided in the outpatient setting, minimizing
hospitalization, but this situation increases
the care burden of caregivers, especially mothers, at
home.[] Other family members in the home can assist
in the care, otherwise, as indicated in the research
results, the care burden of mothers may increase and
this may have other consequences.
Childhood cancers creates a vulnerability of psychosocial
problems for both parents and children,
including a unique risk of decreasing quality of life.
[] Since the diagnosis of cancer, caregivers have experienced
fear, anxiety, insomnia, and post-traumatic
stress.[,,] Providing emotional and physical
care to the child not only raises the care burden of the
mother, but it may also lead to their physical well-being
to worsen.[] Consistent with the literature, we
found that when mothers" anxiety increased, the their
care burden also increased (Table 3). Köse et al.[]
analyzed the relationship between the care burden and
anxiety levels of parents whose child has cancer and
they stated that positive correlation between the care
burden and anxiety levels of parents. Furthermore,
Santo et al.[] determined the care burden and quality
of life of children's caregivers, it was reported that
the negative correlation between care burden and mental
well-being. It should be remembered that cancer is
a major challenge for both children and families and
causes high levels of anxiety.[] Nurses should support
both the child and the family in all processes beginning from the diagnosis.[] Swanson's theory of care suggests
that the nurse, patient, and parent relationship is
essential for care, and the implementation of initiatives
that "promote, restore, and maintain optimal health for
individuals."[] Therefore, nurses should build a relationship
with parents to meet parent's needs.
Limitations of the Study
This study has some limitations. The small sample size
is limited by the number of mothers with cancer children
being treated who may not be representative of
the general population. Furthermore, the present study
did not examine possible effects of treatment intensity
(i.e., radiation dose and chemotherapy protocol).
Conclusion
As a consequence of the present study, care burden and
perceived social support levels by Turkish mothers of
children with cancer were moderate, but 37.2% of them
high level of anxiety. It was found that mothers received
the most support from their "families." Mothers
who reported social life changes had a higher level of
anxiety and care burden. One of the important results
of the study is that it was determined a correlation
between the mother's anxiety score and mother's care
burden score. In the light of all these findings, mothers
should be included in the care of the child by the
nurses and they should inform mothers about diseases,
treatments, and all interventions to reduce the negative
effect of the care. Nurses should build relationships
with family members from the beginning of the
diagnosis. Besides, nurses should assess both children
and mother's concerns and psychological needs. Based
on the assessment outcomes, programs, and activities
such as parental training and psychological counseling
can implemented for mothers.
Note: This study was presented at the 2nd International 7th
National Pediatric Nursing Congress as a verbal presentation
(27-30 November 2019/Izmir, Turkey).
Acknowledgement: Thank you so much to the mothers
for the information that they agreed to participate in the research.
Peer-review: Externally peer-reviewed.
Conflict of Interest: All authors declared no conflict of interest.
Ethics Committee Approval: The study was approved by
the Trakya University Faculty of Medicine Scientific Research
Ethics Committee (No: 19/09, Date: 19/11/2018).
Financial Support: None declared.
Authorship contributions: Concept - E.N.K., M.A.K.,
R.S., İ.Ç.; Design - E.N.K., R.S., M.A.K., İ.Ç.; Supervision -
E.N.K., M.A.K.; Funding - None; Materials - E.N.K., R.S.;
Data collection and/or processing - E.N.K., R.S.; Data analysis
and/or interpretation - E.N.K., R.S.; Literature search -
E.N.K., R.S., İ.Ç.; Writing - E.N.K., R.S., M.A.K., İ.Ç.; Critical
review - E.N.K., M.A.K., İ.Ç., R.S.
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