RESEARCH ARTICLE
A Study
to Assess the Knowledge and Illness Perception of Parents of Children with
Leukemia, Attending Oncology units, at AIMS, Kochi
Nikhitha P.M1, Prof. Sunil. M2,
Mr. Deepu. Prasad3
1II Year
M.Sc Nursing, Child Health Nursing, Amrita Institute of Medical Sciences,
Kochi, Kerala
2Professor,
Department of Child Health Nursing, Amrita College of Nursing, Kochi
3Lecturer,
Amrita College of Nursing, Kochi
*Corresponding
Author Email: nikhithamadhu@gmail.com
ABSTRACT:
Leukemia
is the most common malignancy of children with a prevalence of 129 in one
million, and the second cause of death among children aged 5 to 14 years. Leukemia is a broad term covering a spectrum of
diseases. In turn, it is part of the
even broader group of diseases affecting the blood, bone marrow, and lymphoid system, which are all known as neoplasm. Leukemia can
affect people at any age.
Methods: The approach used for the study was quantitative
approach using descriptive research design. The study was conducted among 64
parents of children with non probability convenience sampling technique. The
data were collected using knowledge questionnaire and illness perception
through illness perception questionnaire (IPQ of Weinman).
Findings: Most of the parents (71.9%) had average knowledge and
25% had good knowledge regarding leukemia. Majority of the
parents perceived that their children have experienced symptoms like pain
(79.7%). Most of parents (53.10%) had
poor illness perception, when considered the personal view about child illness. Majority 70.3% of them strongly agree the cause of
illness is unknown. Association was there between level of knowledge and selected
demographic variables, such as age of the parents(x2 =4.292) and
occupation (x2 =4.183). And also a positive correlation between knowledge level
and illness perception components (r=0.257, 0.243
respectively).
Conclusion: Researcher concluded that most of the parents had
average knowledge and each have different perception about their child’s
illness.
KEYWORDS: IPQ:
Illness Perception Questionnaire, ALL: Acute Lymphocytic Leukemia, AML: Acute
Myeloid Leukemia, CML: Chronic myeloid leukemia.
INTRODUCTION:
Leukemia is a type of cancer, in the blood or bone marrow characterized by an abnormal increase of immature white blood cells called "blasts". The word
leukemia literally means "white blood" and is used to describe a
variety of cancers that begin in the blood-forming cells of the bone marrow1.
Acute Lymphoblastic
Leukemia (ALL) is the most common type of this disease accounting for 75% of
all leukemia and 30% of all malignancies in childhood. ALL affects boys than the girls. Studies have
also indicated that enhancement of the parents’ knowledge about the problems
and needs of their leukemic children has an important effect on family support,
leading to a significant increase in the quality of life of these children.2
Background of the study:
Leukemia is the most common childhood malignancy. Acute
Lymphoblastic Leukemia (ALL) is the most common cancer diagnosed in children
and represents approximately 25% of cancer diagnosis among children younger
than 15 years.3 There are approximately 2,900 children and
adolescents younger than 20 years, diagnosed with ALL each year in the United
State. Cancer registries was estimated that within a
population of 882 million, six thousand children would develop ALL each year in
India.4
Demirbag
B.C, Meltem K and Guven H conducted a
study on knowledge of Turkish mothers with
children in the 0-13 age group about leukemia symptoms at a Family Health Center (FHC) in Turkey’s Eastern Black Sea
Region. The study group of this descriptive /cross-sectional research comprised
2,061 mothers, ages 19-49, at an FHC in the Eastern Black Sea Region in
February 1, 2011 - June 1, 2011. The result of the study shows that 34.9% of the mothers were in the age
group of 40-47, 40.5% had three children, and 73.8% had no experience with
children with leukemia. 45.9% said they learned about leukemia from television,
39.7% stated that the primary reason for childhood cancer was the mother’s
smoking during pregnancy, 68.8% said that early diagnosis would save a child,
and 98% wanted to learn about childhood leukemia. It was determined that the
mother’s knowledge of childhood leukemia was deficient.5
Oana C and Catrinel conducted a study on parents’ illness
perceptions, maladaptive behaviors, and their influence on the emotional
distress of the child and on a Romanian Pediatric cancer group. The objective
was to explore the relationship between children’s distress and their parents’
maladaptive behaviors. This study was to find possible links between factors
influencing the level of distress experienced by children with cancer. The
ages of the 25 children and their parents included in the study varied between
9 and 16 years. The parents who participated in study completed the translated
and adapted version of the “Cancer Behavior Inventory” and the Illness
Perception Questionnaire. Children were
administered the adapted version of the “Emotional Distress Profile” in order
to identify existing signs of distress. Results showed that there was a strong
correlation between the parents’ perceived severity of cancer and the levels of
maladaptive behaviors exhibited by the parents. Secondly, they discovered that
parents' perception of the illness and their maladaptive behavior suppress each
other's effects on children's distress.6
Need for the Study:
Researcher experienced
frequent questioning and different perceptions about the illness from the
parents of children with leukemia. As
parents are the primary care givers of the children, a lag in their knowledge
will also affect the child's recovery.
So the researcher found that it is necessary to assess the knowledge and
illness perception of parents of children with leukemia.
Statement
of the Problem:
“A study
to assess the knowledge and illness perception of parents of children with
leukemia, attending Oncology units, at
AIMS, Kochi.”
Objectives of the study:
1. To identify the knowledge of parents of children with
leukemia.
2. To determine the illness perception of parents of
children with leukemia.
3. To find the correlation between knowledge and illness
perception among parents of children with leukemia.
4. To find the association between knowledge and selected
variables.
5. To find the association between illness perception and
selected variables.
6. To prepare an information booklet regarding leukemia.
Assumptions:
Assumptions of the study
are,
1. Parents may have some basic knowledge regarding
leukemia.
2. Parents may have different illness perception
regarding the disease condition.
3. Information booklet helps in enhancing the knowledge
of parents regarding leukemia.
METHODOLOGY:
Research
Approach and Design:
Quantitative
approach with Non experimental descriptive design is used for the study.
Research
Settings:
Research setting
of the present
study were Oncology
units ( Oncology OPD, Ward and
chemotherapy units) of
Amrita Institute of
Medical sciences (AIMS), Kochi.
Population:
Target
population:
Target
population of the study is parents of children with leukemia.
Accessible
population:
Accessible
population of the study is parents of children
with leukemia attending the Oncology Units Amrita Institute of Medical
Sciences, Kochi.
Sample
size:
The
samples are 64 parents of children with leukemia attending the Oncology.
Units
of AIMS, Kochi.
Sampling technique:
The
samples were selected using Non- probability convenience sampling technique.
Data Collection Instruments:
following tool were used to collected the data.
Tool I –
Semi structured knowledge Questionnaire:
It has got 3 sections.
Section
A – Socio-demographic data of parents:
Section
A consists of 9 items which include age, relationship with the child, religion,
educational qualification, socioeconomic status, family history of leukemia
among parents.
Section
B – Socio demographic and clinical data of child:
Section
B consists of 5 items, which include age, sex, and diagnosis, duration of illness
and treatment of child with leukemia.
Section
C - Structured knowledge questionnaire to assess the level of knowledge of
parents on leukemia:
It
consists of 29 questions. Questions from
areas like, risk factors, types, clinical manifestation, diagnostic
investigations, treatment, management, complication and prognosis of leukemia. Scoring : poor (<10), average
(10-20), and good (21-29).
Tool II - The Illness Perception
Questionnaire (IPQ) to assess the perception of parents of children with leukemia regarding their child’s illness.
John
Weinman and Rona Moss-Morris, Illness Perception Questionnaire (IPQ) is a new
method for assessing cognitive representations of illness. It is a five scale
method. Assessing
cognitive representations of Illness. It include five components were
·
Identity - the symptoms the
patient associates with
the illness,
·
Cause
- personal ideas
about etiology,
·
Personal views include
Ř Time-line - the perceived duration
of the illness.
Ř Consequences
- expected effects and
outcome
Ř Personal control - how one controls or recovers from
the illness.
Ř Illness coherence
Ř Emotion
IPQ scales
are presented in a
mixed order and
rated by the
parents on a
five point scale
ranging from strongly disagree
to strongly agree
(scored 1-5). After reverse
scoring appropriate items, scores for timeline, consequences and others scale
obtained by summing all the scales items and divided by the number of
items. For the cause scale it is not
appropriate to sum all of the items as each item represents a specific causal
belief. The collected data was analyzed using descriptive and inferential
statistics.7
RESULTS:
Section I: Socio demographic characteristic of parents of
children with leukemia.
Table 1:-Frequency and
percentage distribution of subjects based on demographic characteristics n=64
|
Sl. No:
|
Sample characteristics
|
Frequen-cy(f)
|
Percent-age(%)
|
|
1.
|
Age of the parent
18 – 30 years
31 – 40 years
41 – 50 years
Above 50 years
|
15
29
18
2
|
23.4
45.3
28.1
3.1
|
|
2.
|
Relationship with
the child
Mother
Father
|
49
15
|
76.6
23.4
|
|
3.
|
Religion
Hindu
Muslim
Christian
|
37
7
20
|
57.8
10.9
31.3
|
|
4.
|
Educational status
Illiterate
Primary
Secondary
Higher secondary
Graduate
Post graduate
|
0
0
13
26
17
8
|
0
0
20.3
40.6
26.6
12.5
|
|
5.
|
Occupation
Government job
Private job
Daily wages
Self employed
Unemployed
|
11
15
3
7
28
|
17.2
23.4
4.7
10.9
43.8
|
Table 1.Shows that majority of the parents (45.3%)
belong to the age group 31-40 years. Majority of subjects
(76.6%) were mothers and majority
of them (57.8%) are Hindus. 40.6% of the parents were having
higher secondary education and
only 12.5% were post graduates and none
of them were illiterate. Most of the
subjects are (43.8%) unemployed.
Section II: Socio demographic and clinical Data of
children with leukemia
Table
2 shows that most of the children with leukemia (31.7%) were in the age
group of 4-7 years. Majority of children with leukemia (60.9%) were males.
Regarding duration of illness most of them (43.8%) were suffering with leukemia
for 1-2 years. Majority of them (67.2%) were taking treatment for 1-2 years.
Table 2: Distribution of children with leukemia based
on socio demographic characteristics and clinical data.n=64
|
Sl. No
|
Clinical variable
|
Frequency (%)
|
Percentage (%)
|
|
1.
2.
3.
4.
|
Age of the child
1-3 years
4-7 years
8-11 years
12-17 years
Sex
Male
Female
Duration of illness
Less than 1
1-2 years
2-3 years
>3 years
Duration treatment
Less than 1
1-2 years
2-3 years
>3 years
|
19
20
15
10
39
25
18
28
16
2
5
12
43
4
|
29.7
31.3
23.4
15.6
60.9
39.1
28.1
43.8
25.0
3.1
7.8
18.8
67.2
6.3
|
Figure
1: Distribution of children based on types of leukemia
Figure 1: Pie diagram showing types of leukemia
among children.
Pie
diagram shows that 88% of the children with leukemia had acute lymphoblastic
leukemia, 9% of children had acute myeloid leukemia and only 3% had chronic
myeloid leukemia.
Section
III- Knowledge levels of parents regarding leukemia. n=64
Figure
2 depicts that most of the parents (71.9%) had average knowledge, 25% had good knowledge regarding leukemia and only
3.1% had poor knowledge regarding
leukemia.
Table 3: Mean and Standard Deviation of the
Knowledge scores n= 64
|
Maximum score
|
Minimum Score
|
Mean
|
SD
|
Range
|
|
23
|
9
|
17.04
|
4.05
|
9-23
|
Table
3 shows that mean score of knowledge regarding leukemia among parents of
children with leukemia is 17.04 with standard deviation of 4.05. The score ranged from 9-23.
Section
IV: Illness Perception of parents regarding leukemia. Illness perception
Table 4: Distribution of symptoms experienced by
leukemia children as perceived by their parents
|
Symptoms
|
Yes
Frequency
(f) percentage (%)
|
No
Frequency
(f) Percentage (%)
|
|
Pain
|
51 79.7
|
13 20
|
|
Fever
|
51 79.7
|
13 20
|
|
Nausea
|
40 62.5
|
24 37.5
|
|
Breathlessness
|
5 7.8
|
59 92.2
|
|
Weight
loss
|
40 62.5
|
24 37.5
|
|
Fatigue
|
44 68.8
|
20 31.3
|
|
Loose
stool
|
3 4.7
|
61 95.3
|
|
Headache
|
13 20.3
|
51 79.7
|
|
Indigestion
|
6 9.4
|
58 90.6
|
|
Sleeping
difficulty
|
10 15.6
|
54 84.4
|
|
Dizziness
|
1 1.6
|
63 98.4
|
|
Stiff
joint
|
43 67.2
|
21 32.8
|
|
Gum
bleeding
|
8 12.5
|
56 87.5
|
Figure
2 show that most of the parents of children with leukemia (79.7%) perceived
that their children experienced fever and pain. 67.2% of children experienced
stiffness of joints during treatment. Majority of children experienced symptoms
like fatigue (68.8%), weight loss (62.5%) and, nausea (62.5%). Majority of the
parents not perceived in children experienced symptoms like breathlessness
(98.4%), gum bleeding (98.4%), indigestion (90.6%), loose stool (95.3%), and
dizziness (98.4%). All the parents participated in the study perceived that the
symptom experienced by the children is due to leukemia.
Table
5 depicts that majority of parents strongly disagrees that stress or worry
(73.4%), hereditary (67.2%), a germ of virus ( 65.6%),that poor medical care in past (54.7%), radiation
exposure (57.8%), family problems or
worries (71.9%), age (56.3%), accident or injury (70.3%), altered immunity(56.3
%), allergy (68.8%)and genetic factors (71.9% ) are not the causes of leukemia.
Parents agree, that diet and eating habit (50%), pollution in the environment
(53.7%), and chance of bad luck (59.4%) may be a cause of their child illness.
Majority 70.3% of them strongly agree the cause of illness is unknown.
Figure 3: Distribution of subjects based
on personal view about their child’s illness
Figure 3 depicts that more than half of the parents
(53.10%) have poor illness perception, and 46.90% had good illness perception
regarding personal view about their child’s illness.
Table 6: Mean
and standard deviation of illness perception components n= 64
|
|
Maximum score
|
Mean
|
Mean (%)
|
SD
|
|
Time line
Consequences Personal
control
Illness coherence
Emotion
|
23
78
31
25
23
|
18.48
31.01
26.26
17.7
15
|
80.3
39.7
84
70.8
65.2
|
2.71
7.96
3.06
2.95
2.90
|
Table 6 shows that mean score percentage of time
line components (80.3) was more than the other illness perception components
with standard deviation 2.71. In consequences component mean score percentage
(39.7%) which is less than the other components with standard deviation 2.63.
Section
V:
Correlation between knowledge and illness
perception among parents:
Table 7: Spearman Correlation
coefficient between knowledge and illness perception components
|
Illness perception
components
|
Correlation Coefficient
(r value)
|
p- value
|
|
 Timeline
Consequences
Personal Control
Illness Coherence
Emotion
|
Knowledge level
|
0.257*
-0.091
0.149
0.243*
-0.051
|
0.040
0.472
0.240
0.053
0.691
|
|
|
|
|
*significant, p<0.05 ; ns- not significant
Table
7 shows that a significant weak positive correlation existing between timeline
(r=0.257 p<0.05) and illness coherence (r=0.243, p<0.05). No relation was
found between knowledge and other illness perception components like
consequences (r=-0.091, p>0.05) personal control (r=0.149, p >0.05) and
emotion (r=-0.051, p>0.05).
The table 9 shows that the calculated chi-square
value in case
of selected demographic variables such as age of
the parents, education,
occupation, duration of illness , duration
of treatment with illness
perception level is less than the table
value (χ2(1) =3.84).
So there is no significant association between illness perception and
selected demographic variables.
RECOMMENDATION:
Based
on the findings of the study, the investigator made the following recommendations;
·
Similar study can
be replicated on a larger sample.
·
A study can be
conducted to develop knowledge and change the illness perception of parents
regarding childhood leukemia.
·
Study can be
conducted in different population like children.
·
An experimental
study can be done among the parents to assess the effectiveness of educational
programs.
CONCLUSION:
The final conclusion reached
from the study was that parents who participated in the study had average knowledge and half of them have poor illness
perception, but significant positive correlation between knowledge and illness
perception component such as timeline and illness coherence. From the findings of the study and in the light of available literature it can be
concluded that the parents have lack of knowledge regarding child hood leukemia.
And also perception of parents regarding illness was different in each person.
Most of the children experienced symptoms like fever and pain. In this study
they perceived that most of the symptoms are related to their child illness. Parents believed that main cause of illness
may be unknown.
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