Iranian Journal of Critical Care Nursing Fall 2010, Volume 3, Issue 3; 99-103

Knowledge level and educational needs of thalassemic children's parents

in Kerman
Ghazanfari Z.* MSc, Arab M.1 MSc, Forouzi M.2 MSc, Pouraboli B.3 PhD
*
Physiology Research Center & Razi Faculty of Nurisng & Midwifery, Kerman University of Medical Sciences, Kerman, Iran;
1
Accidents & Incidents Research Center, Kerman University of Medical Sciences, Kerman, Iran;
2
Neurosciences Research Center, Kerman University of Medical Sciences, Kerman, Iran;
3
Razi Faculty of Nurisng & Midwifery, Kerman University of Medical Sciences, Kerman, Iran

Abstract
Amis: Tallasemic population is mainly young; therefore, family plays a very important role in providing care for them.
Considering the chronic nature of thalassemia, it is necessary for patients and their families to have addequate information
on the disease proccess and related therapeutic measurements. This study was performed to determine the knowledge level
and educationl needs of thalassemic patients parents.
Methods: This descriptive study was performed on 300 thalassemic patients parents who reffered to Kerman special
diseases center in year 2005. Data was collected based on a researcher-made questionnaire by interviewing parents and was
analyzed by SPSS 15 using frequency table, ANOVA, student t-tests and Spearman correlation coefficient.
Results: The mean age of fathers was 42.029 years and for mothers it was 35.98.4 years. The mean score range of 20
items in need questionnaire was between 2.79 and 2.96 (from the maximum score of 4). Parents knowledge was under 50%
considering all items and they gained 37% of the total score. There was a positive correlation between parents level of
education and knowledge as well as their educational needs. Mothers educational needs were more than that of fathers.
Conclusion: Thalassemic patients parents dont have adequate information on the disease and need a high level of
education.

Keywords: Knowledge, Parents' Educational Need, Thalassemia

Introduction Identification and prioritizing of the needs indicates

Thalassemia is the most common hereditary disease in
the world that is considered as one of the health-
treatment problems in Iran due to its high prevalence
[1]. Every year about 100 thousand children around
the world are born with different forms of this disease
[2, 3, 4]. According to the latest statistics of
thalassemia association, there are 18,800 patients with
major thalassemia in Iran, who need special care and
treatment [5]. Presence of a sick child in the family
paves the way of the familys change of behavior and
the increase of needs. Since thalassemic patients are
mostly young population in the country, the role of
family in their care is very important [6]. Due to the
chronic nature of this disease, like other chronic
diseases, in spite of its physical symptoms, it gives
rise to socio-psychological congenital problems and
creates economical problems for patients and their
families [7]. In addition, thalassemia can impose many
adverse effects on individuals, families and society
[8]. Therefore it is necessary to identify the needs of
thalassemic children parents. Determination of needs
is the starting point of any educational and care
program and developing a training plan is subjected to
assessment and identification of the needs [9].
* Correspondence; Email: ghazanfari5@yahoo.com
the need-assessment process [10].
Pakbaz et al. in their study showed that thalassemic
patients have been suffering from severe disorders and
hurts in their life quality due to excessive problems;
therefore, their needs and their families needs should
be noted for satisfying these needs [11]. The results of
a study by Alisefat revealed that 70% of the parents of
thalassemic children required training in field of
knowledge about the nature of their child's disease,
and 50% needed training in the field of childs
nutrition and care programs, and only 3.69 % had
trouble in dealing with their children [12]. Naghili
found that most parents of thalassemia children need
training due to the lack of knowledge about prevention
and complications of the disease [13]. In another study
conducted in 2003, it had been shown that 74.4% of
parents with thalassemic children were receiving
necessary information and advice about their child's
illness from other families with thalassemic children.
In this study, most mothers had low knowledge and
high educational needs [14].
Brunner and Suddarth believe that one of the basic
needs of human beings is the need for learning,
training and data acquisition [15]. In fact, need
assessment is the process of data gathering and the
Received 2010/05/11; Accepted 2010/06/30
Knowledge level and educational needs of thalassemic children's parents in Kerman _________________________________________
first step in the planning process is awareness.
Therefore, training the individuals based on their
health needs is essential. Identification and evaluation
of potential powers of parents with sick children is
very important in education, because parents have an
effective role in raising the familys health level [16].
Family as the most important supportive system plays
an important role in child care that even continues up
to the patients hospitalization [1]. Considering the
vital role of parents and their impact on the
effectiveness of the care, attention to the needs of
parents is as important as paying attention to the
childrens needs. Since thalassemia is a chronic
disease, the patient and his family need to have the
required information about disease processes and
therapeutic interventions, because in this case they
will be able to better take care of their children despite
all the problems [17, 18, 19, 20, 21]. Therefore,
considering few researches in terms of knowledge and
need-assessment of parents with thalassemic children
and despite the fact that Iran is situated in the
thalassemia belt, it is essential to investigate the
knowledge and educational needs of parents with
thalassemic children to help taking care of this groups
of patients by an appropriate planning and take a
positive step toward their health support. Responding
to educational needs and accurately recognizing the
real needs of parents is essential. Therefore, nurses'
participation in the education of parents and enhancing
their knowledge according to their educational needs
are considered as one of the academic and professional
responsibilities of nurses.
This study was conducted with the aim of
investigating the knowledge and educational needs of
parents of thalassemic children.
Methods
This research is a descriptive study which was
conducted on parents of thalassemic children referred
to Kerman special diseases center in 2005 for 6
months. Research population was all parents of
thalassemic children. Fathers or mothers of the
thalassemic child who were with the child at the
responding time were considered as parents. Data was
collected using interview by the researcher. Number of
subjects was 300 patients who were selected through
census sampling method. All subjects were given the
required explanations in field of the research purpose
and they were asked if they wished to participate in
the study.
Data collection tool was a researcher-made
questionnaire including three parts; the first section
contained demographic and social information of the
parents of thalassemic children, such as education
level, number of children suffering from thalassemia,
the time of diagnosis, birth order of the thalassemic
child and some of the thalassemic individual's
characteristics. The second part included 22 questions
regarding knowledge that was classified in four
domains of understanding the nature of illness, taking
care of patients, nutrition state and prevention from
disease in a three-option form (yes, no, I do not
know). In this section each correct answer was scored
3, the wrong answer 2 and the answer of I dont
know was scored 1. The third section included
parents comments about the level of educational need
that was set as four-option questions (from very high
to not at all) and in all cases, the person determined
their educational need and based on options, a score
between 1 to four was assigned.
Content validity was used to determine the validity of
the questionnaire, and the obtained validity coefficient
was 0.97 for knowledge questions and was 0.98 for
questions which related to the needs. Internal
consistency reliability of different parts of the
questionnaire was calculated after data collection
using Chronbach's alpha coefficient. This coefficient
was 0.99 for educational needs and 0.97 for
knowledge. Regarding the questionnaires
subcategories of knowledge in field of the disease
nature, alpha coefficient was 0.93, for care domain
was 0.93, for nutrition domain was 0.95 and for
prevention domain was 0.94 [22]. It should be noted
that assessment of educational needs is done in
different ways. In some cases, the rate of knowledge is
measured and lack of awareness is considered as the
educational need and in some cases the training need
is done through surveys. In order to enhance the
credibility of results both methods were used.
SPSS 15 software was used for data analysis using
central and distribution indices and ANOVA, student
t-test, post hoc test and Spearman correlation
coefficient.
Results
31% of parents were fathers and 69% were mothers.
The average age of fathers was 42.02 9 years and
that of mothers was 35.98.4 years. 42.3% of fathers
were in the age group of 36-45 years and 43.7% of
mothers were in the age group of 31-40 years. 35.3%
of individuals responding to the questions (either
father or mother) were illiterate and 26.3% were high
school graduates or had higher education. The studied
families had the minimum of one child and maximum
of eight children. The average number of children was
3.471.9. 58.3% of parents were relatives. 68.3% of
_______________________________________________________________________________________________ Ghazanfari Z. et al.

families had one child, 26.3% had two children and who had high school diploma or higher degrees. Mean
5.3% had three children with thalassemia. 94% of of knowledge score for illiterate and elementary
parents had gained their information in the field of educated Individuals was significantly higher than that
thalassemia, from physicians, health resources and of individuals with diploma or higher degrees
nurses. 23% mentioned the thalassemia history in the (Table3).
family.
The average of 20 proposed educational needs was, Table 3- Comparison of knowledge and educational needs based
with a little difference, between 2.79 to 2.96 (out of on parents' education level using post hoc test
Awareness Training Needs
maximum score of 4). Correct answer to knowledge Variable
Level of Level of
questions was below 50% for all questions and for Education Mean SD Mean SD
Significance Significance
four of the questions was below 20% and the subjects Illiterate 5.6 7.6 61.5 15.5
of the study responded "I dont know" for 17 Primary
7.4 8.1 57.8 13.4
questions, higher than 73% and for 6 questions, below education
0.001 0.001
Guidance
50%. After gathering individuals' opinions in terms of school
8.1 7.9 57.3 13.5
the percentage of educational need among the domains higher 11.8 7.4 52.9 14.7
of knowledge, the lowest score percentage was related
to the domain of the nature of the disease (39%) and The educational needs of mothers of thalassemic
the highest score percentage was related to prevention children were higher than the fathers. Moreover, there
domain (43%) (Table1). was no significant difference between the mean of
knowledge scores in both genders.
Table 1- Distribution of the central and distribution indices of the
educational needs and total knowledge score of parents
Statistics
Mean SD Minimum Maximum Percentage Discussion
Variable
Nature of the
3.08 3.09 0 8 39
The first step in the education process is the need
disease assessment and according to individual or groups
Treatment and needs an appropriate program can be planned.
2.91 2.96 0 7 42
Care Program
Nutrition
Statistical analysis on the results obtained from the
0.73 1.03 0 3 34 study showed that 69% of subjects were mothers of
Program
Prevention from
1.3 1.4 0 3 43
thalassemic children, which is not unexpected,
disease because in our society most children are cared by their
Total 8.28 8.35 0 22 37 mothers. The number of studied families children was
Educational
Needs
57.8 14.7 20 80 72 between one and 8 children. High number of
thalassemic children in this study was in a way that in
There was a negative significant correlation between some families there was more than one sick child. it
the educational needs' score and the knowledge score appears that this may happen due to the parents lack
and its subcategories in all cases. The correlation of sufficient knowledge about the nature of the disease
coefficients were from at least -0.51 up to -0.67 (Table that by increasing the awareness and education can
2). direct many of reproductive behaviors toward the
point that that the increase in thalassemic children can
Table 2- The relationship between educational needs score and be prevented. Regarding the fact that the relationship
parental knowledge between education and awareness and educational
Knowledge Domains Educational Need's Score needs was significant in this study, it is necessary to
Nature of the disease -0.67 prevent from birth of new thalassemic children by
Treatment Program -0.63
increasing the parents awareness and knowledge. One
Nutrition Program -0.52
Disease Prevention -0.65 of the most important ways of overcoming the genetic
Total -0.67 diseases particularly thalassemia is raising the
All cases were significant (p=0.01) awareness of parents. The results showed that 58.3%
of parents were relatives, while in Hajian study 12.3%
Comparison of the mean total score of knowledge and of the subjects were relatives [23]. This result
educational needs according to individual probably shows the poor knowledge of people about
characteristics showed a significant difference just for the adverse effects of intra-familial marriages, so that
educational level. Mean of educational needs' score of Nasiri et al. in their study on the status of thalassemia
illiterate people was significantly higher than those in Iran reported that 66% of thalassemic children had
Knowledge level and educational needs of thalassemic children's parents in Kerman _________________________________________
consanguineous parents [24].
Results of a research on the way of acquiring
information about thalassemia showed that 94% of
parents gained their information through health centers
(physicians, nurses, etc.), while in Hajian study the
subjects mentioned radio and television as the main
sources of information [23]. However, according to
the obtained results it seems that training is not
enough and more efforts in this field should be done
by the health-medical centers. Today, individuals
general information about the importance of health
care has been raised compared to the past that their
value will be higher and better understood by
enhancing the knowledge and awareness [25]. In our
study, parents gained the 36% of the whole score of
awareness about thalassemia, which shows the poor
awareness of parents in this field. Among the domains
associated with knowledge, the lowest score was
related to the disease nature and the highest score was
related to prevention. In Khin et al study, only 18-28%
of mothers were aware of the hereditary nature of
thalassemia [26]. In Hajian study, the subjects were
aware of the nature of thalassemia about 27-86% in
different cases [23]. It seems that during recent years,
due to use of media and education about thalassemia,
changes have been done in the structure of knowledge,
especially in young people. More extensive and
continuous training is necessary for promoting the
culture of disease prevention [6]. Overall, the
educational needs' score was 72%, showing the high
educational needs. These results are exactly consistent
with the results related to the knowledge. The needs of
thalassemic children's mothers are more than fathers,
indicating that mothers feel more responsibility due to
their emotional and personality structure and seek data
more. Individuals need enough knowledge and
awareness of the disease and they need to know the
way of taking care of themselves for following-up
their treatment and health recommendations, otherwise
they won't be able to participate in self-care or caring
others [18].
Comparison of the mean total score of knowledge and
educational needs according to individual
characteristics only showed a significant difference for
educational level, so that the educational needs of
people with low education was higher than the other
groups and their knowledge level was lower. In other
words, education has an effective role in these
peoples knowledge and this result is consistent with
the results of other related studies [12, 27]. There was
a negative significant relationship between the
educational needs mean score and the mean score of
knowledge components in all cases, that is, by
increasing of the total knowledge score and its
domains, the educational needs score will decrease
and vice versa.
with regard to the findings of this study that indicate
the low knowledge of subjects and the magnitude of
educational needs, and due to lack of need assessment
studies concerning parents with sick children in Iran, it
is necessary to conduct further research in this area.
Conclusion
Parents of thalassemic children have low knowledge
and high educational needs. Public health depends on
proper implementation of health and education
programs, meanwhile by identifying the educational
needs of parents about the nature of disease,
complications, prevention, treatment, etc. and
according to their beliefs, attitudes and cultures, one
can plan in this field and provide necessary services to
enhance their knowledge and improve their
performance.
Acknowledgement: The esteemed colleagues and
officials of the medical center of Kerman special
diseases are hereby appreciated for their cooperation
in the implementation of the research and the research
deputy of Kerman University of Medical Sciences are
appreciated for their assistance and financial support
of this project.
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