Introduction
The International Agency for Research on Cancer report
indicates that about 300,000 children aged <19
years worldwide were diagnosed with cancer between
2001 and 2010. It is estimated that childhood cancer
causes 80,000 deaths worldwide every year.[] According
to the records of the Turkish Pediatric Oncology Group from 2002 to 2009, 11,898 children were affected
with cancer in Turkey.[] Childhood cancers used
to have high mortality rates; however, today cancer has
become a life-threatening chronic disease rather than a
mortal disease thanks to advances in cancer treatment.
[] Despite this significant decrease in mortality, the
perception of mortal disease lingers within the society.
Cancer is a disease that arouses feelings of fear, uncertainty, guilt, helplessness, and death.[,,,] Therefore,
the diagnosis of cancer in children negatively affects
both the children and their parents emotionally,
socially, mentally, and spiritually, apart from the physical
effects of cancer.[,]
Although the causes of childhood cancer are not
known with certainty, some structural and environmental
risk factors that play a role in the development
of cancer have been identified. These include congenital
or genetic anomalies, immunodeficiency syndromes,
virus infections, exposure to radiation or some
chemicals [such as benzene or pesticides], and some
medicines used during pregnancy.[] Individuals may
develop theories about the cause of cancer that may
not be based on scientific knowledge. Such attempts to
understand or make sense of the illness are described
as causal attributions.[] Causal attributions can be
classified by locus [internal or external], controllability,
and modifiability.[]
Previous studies have shown that people"s opinions
on the causes of cancer are differs. For example, adult
cancer patients have stated the causes of cancer to be
mostly misfortune or bad luck.[] Patients with lung
cancer listed the causes of their disease to be smoking,
bad luck, working hard, stress, genetic, or familial factors,
nutritional habits, or work environment.[] In a
large study of American Cancer Society on cancer survivors,
the 10 most common causes of cancer declared
were lifestyle, biological, environmental, smoking,
chance/luck, stress, existential, prior health condition,
psychological.[]
The level of knowledge regarding the causes of
childhood cancer among parents remains uncertain.
[] The limited number of studies conducted on parents
of children with cancer reported that the parents
stated psychosocial problems [], emotional stress
and nutrition [], and faith and their insufficiency
in their maternal role.[] In the studies conducted
on parents of healthy children in Turkey, the participants
stated that cancer is most frequently caused by
smoking, foods (prepared food stuffs, food additives,
barbecue, tea, etc.), alcohol, radiation, environmental
pollution, stress, sorrow, genetic factors, sun, bacteria
or viruses, or cell phones.[] There is no study about
causal perceptions in Turkish parents of children with
cancer. As known, perceptions vary by cultural characteristics;
hence, this study will contribute to the literature
about these cultural differences.
Causal attributions may affect cancer survivors"
quality of life, psychosocial adjustment, and distress
levels [,], and they may increase one"s perception of control [], which could affect overall adjustment
to a cancer diagnosis. Nevertheless, parents understanding
the causes of their children"s disease could
affect coping, reduction of negative beliefs, effective
control of the treatment process, prevention of cancer,
and adherence to postcancer treatment.[,]
Positive compliance of parents with the treatment
contributes to the children"s adherence to the disease
and treatment process along with their development.
[,,,]
Determining the parents" causal attributions for
their children"s cancer could be guide pediatric nurses
to plan family-oriented interventions and ensure the
compliance of children and their parents with treatment.
This study aims to determine parents" causal attributions
for their children's illness and differences
according to sociodemographic factors.
Methods
Sample and Setting
This study had a cross-sectional design. The sample
consisted of the parents of the patients hospitalized between
February 2014 and January 2015 in the Pediatric
Hematology and Oncology Unit of Ankara University
Cebeci Children"s Hospital (n=229) who agreed to participate
in the study with consecutive sampling. This
hospital accepts patients from all over Turkey because
it has one of the largest children's hematology and oncology
clinics in the capital city of Turkey.
Inclusion criteria were being a parent of a cancer
patient hospitalized in the Pediatric Hematology and
Oncology Unit of Ankara University Cebeci Children's
Hospital. Parents who have cognitive/neurological
problems and who refuse to participate in the
study were excluded from the study.
Measures
The data were collected using an Introductory Information
Form and the Causal Representations subscale
of the Illness Perception Questionnaire (IPQ).
The scales were administered by the researchers to the
parents who met the inclusion criteria and agreed to
participate in the study. Questionnaires fulfilled with
face-to-face interviews in the parent's resting area.
The Introductory Information Form. This was prepared
by the researchers and consisted of eight questions
on the age, gender, marital status, educational
status, socioeconomic status, region of residence,
children's diagnosis, and the time passed after the
children had been diagnosed.
The Causal Representation Subscale of the IPQ. This
was used to determine the causes of cancer perceived by
parents of children diagnosed with cancer. Questionnaire
was developed by Weinman (1996) [], revised
by Moss-Morris et al. (2002) [] and adapted in Turkish
by Armay et al. in 2007.[] The Causal Representation Scale, a five-point (from 1 representing "strongly
disagree" to 5 representing "strongly agree") Likert type,
consists of four subdimensions and a total of 18 items.
The subdimensions are Psychological Attributions,
Risk Factors, Immunity, and Accidental, or Chance.
The scale, developed to determine the causes of disease
in adult patients, was re-organized for adaptation to
childhood cancers. The item "My mental attitude" was
excluded from the possible causes, and the item "aging"
was changed to "growing." A pilot administration
was performed with parents of 10 children with cancer
using the final subscale with 17 items. In addition, the
parents were asked to indicate the three most significant
causes of their children"s disease (they could either make
choices from the table in the subscale or write what they
thought to cause cancer) to allow qualitative assessment.
The aim was to learn the parents" own thoughts beyond
subscale limitations. Causal representations subscales
were reported high internal reliability and Cronbach's
alpha value ranging from 0.41 to 0.78.[] In the present
study, the Cronbach"s alpha coefficient of the Causal
Representations subscale was found to range between
0.42 and 0.66 [Table 2].
Data Analyses
The sociodemographic data were analyzed using descriptive
statistical analysis (frequency, mean, and percentage)
methods. The multiple analysis of variance
(MANOVA) test was used to analyze the total scores of
the Causal Representation subscales according to independent
variables (sociodemographics as age, parental
status, marital status, education status, income level,
region of residence, and time of diagnosis variables).
Post hoc (Schefe) tests were used to find out, which
variable is the source of the difference. All analyses
were performed using the SPSS 21 package.
Ethical Consideration
The study was conducted according to the precepts of
the Helsinki Declaration. The approval of the Ethics
Committee of Ankara University Rectorate (Decision
no: 1288, Dated: 10.1.2014) and the permission of the
Head of Ankara University Cebeci Children"s Hospital
were obtained to conduct the study. The aim of the
study was explained to the parents and their informed
consents were obtained.
Results
The study included 229 parents staying with their hospitalized
children. A majority (92.6%) of the primary caregivers of the children were their mothers. The average
age was 35.8±7.00 years for mothers, 38±9.88
years for fathers, and 8.24±5.52 years for children. Of
the parents, 41.5% had graduated from primary school,
and 55.5% came from outside Ankara. The time of disease
diagnosis was mostly 1?5 years (34%).
The children in this study were mostly diagnosed
with leukemia (45%) and osseous tumors (21%). This
distribution was similar to the distribution of childhood
cancers in Turkey.[20] Although the prevalence
of childhood cancers differs by country, leukemia is
the most frequently observed childhood cancer type
around the world, with a rate of 35%.[] Table 1 shows
the sociodemographic information of the parents and
children. Table 2 shows the mean scores of the subdimensions.
It was 2.94 for risk factors, 2.39 for immunity,
1.76 for accident or chance, and 1.69 for the Psychological
Attributions subdimension.
Table 1: Sociodemographic information of the participants
Table 2: The Mean Scores of Causal Representations
The MANOVA test showed that the total scores of
the Causal Representation subscale did not vary by parental
status, marital status, education status, region of
residence, and time of diagnosis (p>0.05). Mean score
of the parents on the Psychological Attributions subdimension
was found to show a statistically significant
difference according to their income level (F=4.410;
p=0.013). The parents with a low income level obtained
higher scores on the Psychological Attributions subdimension
than those with a medium income level.
The mean score of the parents on the Psychological
Attributions and Risk Factors subdimensions were found to show a statistically significant difference according
to their age. The older parents obtained higher
scores on the Psychological Attributions (F=2.558;
p=0.028) and Risk Factors (F=2.356; p=0.041) subdimension
than younger ones (Table 3).
Table 3: Causal representations subscales by sociodemographics
They also indicated in the open-ended question the
most significant causes of their children"s disease to be
faith, the will of God, and the evil eye (43.9%); stress,
sorrow, and worry (20.0%); and nutrition (medicines,
genetically modified foods, junk foods, etc.; 12.6%).
Other answers of the parents were infections, germs,
viruses, radiation, technology, environmental pollution,
genetic factors, and physical weakness or immunodeficiency
(Table 4).
Table 4: Qualitative Answers of Parents about Causal
Attribution
Discussion
In this study, the majority of parents identified specific
causal attributions for their children's illness. Overall,
the most common causal attribution were risk factors
(internal control), indicating most of parents identified
causal attributions in their control. However, when
they were asked their opinion with open ended, they
believe their children"s illness occurred out of their
control (because of faith, will of God, and evil eyes).
We observed variation in causal attributions by parental
age and income level.
The literature reports that the most frequently observed
causes of childhood cancers are genetic factors,
ionizing radiation, and behavioral factors; and that the factors such as environmental pollution and stress play
a less important role.[,] The present study indicated
that the causes of cancer stated by the parents were different
compared to those reported in the medical literature.
In this study, the most common causal attributions
were risk factors (M=2.94). The most common
reasons cited within the Risk Factors subdimension
were diet or eating habits (M=2.25). According to their open-ended answers, nutrition (medicines, genetically
modified foods, junk foods, etc.; 12.6%) was the most
cited reason. Nutrition/eating habits are well known as
individuals have internal behaviors that they can control,
and that the lack of adequate consumption of vegetables
and fruit increases cancer incidence in the literature.[] In a study with cancer survivors, eating and
diet was also attributed as the most common cause.[]
Similar to this study, previous studies have also indicated
this risk factor among the possible causes of
cancer.[5,6,25,26,27,28,29,30] However, in Hopman
and Rijken"s study (2015) [], it was the third leading
cause of the subscales. This situation is thought to arise
because of cultural differences.
The second-highest scoring average of the Causal
Representation subscale was the Immunity subdimension
(M=2.39). In a study of adult cancer survivors in
the United States, immunity (M=3) was the secondmost
common subscale []. Parents stated their child's
altered immunity (M=2.54) as the most significant
cause of cancer within the Immunity subdimension.
Many studies reported immunity to be one of the most
significant causes of cancer.[,,,,] Immunity is
especially listed among the risk factors of acute lymphoblastic
leukemia (ALL) and non-Hodgkin lymphoma
(NHL).[,,] Because the majority of the children in
this study were diagnosed with ALL, parents were aware
of the risk factors in this type of cancer.
It was also found that environmental pollution
(M=2.31) was perceived as among the most significant
causes of childhood cancer within the Immunity
subdimension. A previous study has also reported that
one in four cancer survivors have stated environmental
pollution as the cause of the disease.[] Environmental
pollution is external factor and out of an individual's
control. However, there is no scientific evidence that environmental
pollution is an important cause of cancer.
The Accidental or Chance subscale of the Causal
Representation scale had the third highest average
score (M=1.76) even though when asked open-ended,
it was 43.9% parents responded fatalistic answers
such as the "will of God, faith, evil eye." In both the
international and the national literature, patients with [,,,,,,] and without [,] cancer consider
misfortune and bad luck to be among the causes
of cancer. Considering that the Turkish society culturally
has a fatalistic approach [], it can be said that
misfortune, bad luck, faith, evil eye, etc. are commonly
considered as causes of a serious disease such as cancer.
The main reason for this may be the cultural structure
and the important position of religious beliefs
in people"s perception of health and disease.[,]
Abaan (1992) [] also indicated that the will of God
is perceived as a cause of disease.[] Considering the
current study's findings, Turkish people continue to attribute
the diseases to external supernatural powers or
factors two decades later.
The Psychological Factors subdimensions had the
lowest score among the subdimensions (M=1.69).
Likewise, the Psychological Factors subdimension
(M=1.94) had the least score in the study on adult cancer
survivors in the USA []. Within this subdimension,
stress (M=2.02) was perceived by the parents as
one of the most significant causes of cancer; according
to parents" qualitative answers 20% parents believed
stress was their children"s illness reason. Although
stress is considered a trigger of the carcinogenic process
by suppressing the immune system and creating
oxidative DNA damage [,], a scientific consensus
does not exist on the fact that stress is a cause of cancer.
Comparing our results to those of other studies, stress
has been a common attribution in multiple populations.[,,,,,,,,] The negative effects
of stress on health are widely known; therefore, stress is
associated with cancer.
Limitations
The major limitation associated with studies with a
cross-sectional design is that direction of causation
cannot be established. Although the study sample
seems to be limited with only one hospital, it can be
generalized to the Turkish population. This is because
our hospital caters to patients from all over Turkey because
it has one of the largest children's hematology
and oncology clinics in the capital city of Turkey.
Because most primary caregivers were mothers,
study sample was heterogeneous with regard to parents"
sex. This study analyzed only the thoughts of parents
of children affected with cancer regarding causes
of their children"s disease. It was not possible to make
causal conclusions regarding the relationship between
parents" thoughts on the causes of disease and sociodemographic
variables. It is known that time of diagnosis
is positively related to families" compliance with the disease treatment, coping with the disease, and treatment
management. Therefore, determination of the
relationship between the variables and the perception
of the causes of disease could have strengthened our
study findings. Another limitation of the study is that
parents and children were not evaluated simultaneously.
Addressing the parents" and children"s perceptions
about the causes of disease together will enable comparisons
to be made. This will help determine the effects
of parents" perceptions on the causes of disease on
coping strategies. Comparisons according to age and
diagnostic groups of children were considered to affect
the evaluation of parents. For this reason, handling of
these variables could have made the study stronger.
Implications for Nursing Practice
It is important for clinicians planning health education
on preventing cancer to devote greater attention
to cultural assessment and to include cultural beliefs in
cancer care for Turkish pediatric cancer patients and
their parents. The cultural beliefs should be included
in the planning and evaluation of the case of each affected
child. Adopting this approach would provide
an opportunity to improve the cultural competency of
pediatric nursing. Given the cultural context of illness
representations, researchers and health providers must
carefully consider how they construct models of parent's
ideas about childhood cancer and how they create
health interventions. Our results indicate that public
health and healthcare efforts should be improved in
both general healthcare as well as cancer care.
Conclusion
Our study results showed that parents of children affected
with cancer have similar perceptions regarding
cancer to those reported in the literature, but have more
fatalistic views because of cultural differences. Education
regarding the causes of diseases may help positively
change parents" and children"s perceptions of the disease.
Further studies are needed to analyze the relationship
between the perception of both the affected children and
their parents on the causes of disease, compliance with
treatment, and coping with the disease. The results of
this study will guide pediatric nurses within the scope of
individualized holistic healthcare. Determining the parents"
causal representation of cancer may help healthcare
providers plan initiatives to support the development of
risk-decreasing health behaviors.
Peer-review: Externally peer-reviewed.
Conflict of Interest: The authors declare that there is no
conflict of interest.
Authorship contributions: Concept - F.I.E., S.A.T.; Design
- F.I.E., T.A.S., S.A.T.; Supervision - F.I.E.; Materials - F.I.E.,
T.A.S.; Data collection &/or processing - T.A.S.; Analysis
and/or interpretation - F.I.E., T.A.S.; Literature search -
F.I.E., T.A.S., S.A.T.; Writing - F.I.E., T.A.S.; Critical review
- F.I.E., T.A.S., S.A.T.
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