Emotional and Behavioral Aspects of Children with Thalassemia

in Banda Aceh, Indonesia

Ilma Tawarina

, Farah Diba

Undergraduate Programme of Nursing Science, Faculty of Nursing, Syiah Kuala University, Banda Aceh, Indonesia

Department of Community Health Nursing, Faculty of Nursing, Syiah Kuala University, Banda Aceh, Indonesia

Keywords: Emotion, Behavior, Thalassemia patient, Strengths and Difficulties Questionnaire (SDQ)

Abstract: Thalassemia is an inherited disorder that can hardly be cured. A thalassemia patient needs blood transfusion

for a lifetime. A child with thalassemia might experience emotional and behavioural changes due to some

changes in his or her physical function which might lead to particular psychosocial effects. The purpose of

this research was to identify the overview of emotional and behavioural aspects of children with thalassemia

in one of the public hospital in Aceh. This descriptive-quantitative research was conducted with a cross-

sectional study approach. There were 117 respondents participated in the study by using consecutive

sampling technique. The data collected by utilising the ‘Strengths and Difficulties Questionnaire’ (SDQ)

assessing the emotional symptoms, behavioural issues, peer relations, hyperactivity disorder, and prosocial

behaviour as the five sub-variables. The result of univariate data analysis showed that children with

thalassemia had the emotional and behavioural aspects (89.7%), and the five sub-variables – emotional

symptoms (74.4%), behavioural issues (76.9%), peer relations (59.0%), hyperactivity disorder (84.4%), and

prosocial behaviour (69.2%). Hence, it is suggested that the medical workers keep educating the parents in

order to maintain the emotional and behavioural aspects of children with Thalassemia.

1 INTRODUCTION

Thalassemia is a hereditary disease characterized by

a disturbance in the synthesis of haemoglobin (Hb)

resulting from a change in the level of globin chain

production. In 2011 the World Health Organization

(WHO) stated that about 5% of the world's

population carries haemoglobin-carrying genes,

especially sickle cell disease and thalassemia.

However, in some regions shows the percentage of

carriers is 25%, with an estimated more than

300,000 babies born with haemoglobin

abnormalities every year and mostly in low and

middle income countries. WHO also states that this

condition is mostly common in the tropical region,

but the migration of residents has spread this disease

to most countries (Fatmasyithah & Rahayu, 2014).

Thalassemia International Federation (TIF)

(2011) reported that Indonesia is included in the

group of countries with high risk of thalassemia.

According to the Indonesian Ministry of Health

(2013) the prevalence of thalassemia’s carrier in

Indonesia is estimated around 3-8%. If the

percentage of thalassemia reaches 5%, with a birth

rate of 23 per 1,000 of the 240 million population, it

is estimated that there are around 3,000 babies with

thalassemia born every year. The results of the 2007

Indonesian Basic Health research (RISKESDAS)

showed the national prevalence of thalassemia was

0.1%. Currently, thalassemia is still a global

problem that requires special attention. Thalassemia

is found throughout the world with the highest

prevalence of thalassemia genes in several tropical

countries (TIF, 2008).

Data from the Indonesian Ministry of Health in

2010, Aceh province was recorded as a province

with the highest percentage of thalassemia in

Indonesia with a figure of 13.4% (Fatmasyithah &

Rahayu, 2014). According to WHO global incidents,

1 in 5 children aged less than 16 years’ experience

emotional and behavioural problems. In Singapore

for example, 12.5% of children aged 6 -12 years

have emotional and behavioural problems (Wiguna

et al., 2010). Research conducted in one of hospitals

in Surakarta, Indonesia in 2013 found that the

prevalence of emotional and behaviour problems in

Thalassemia children is 26% (Nurhaeni, 2015).

Tawarina, I. and Diba, F.

Emotional and Behavioral Aspects of Children with Thalassemia in Banda Aceh, Indonesia.

DOI: 10.5220/0008397200002442

In Proceedings of the Aceh International Nursing Conference (AINC 2018), pages 255-260

ISBN: 978-989-758-413-8

255

Emotional and behavioral problems in children

lead to difficulties in learning since it is difficult to

focus and concentrating, poor ability to remember,

behave inappropriately in the school environment

and will increase delinquency and crime in

adulthood (Blanchard et al., 2006). Emotional and

behavioral problems are one of the several problems

that cause barriers to a child's development such as

psychosocial problems, depression in children, and

other mental disorders. Emotional and behavioral

problems in children are a serious problem since

they affect the children development and cause a

decrease in productivity and quality of life (Wiguna

et al, 2010). Various bio psychosocial stressors are

often associated with the occurrence of emotional

and behavioral problems in children, such as

physical illness, domestic violence, inadequate peer

relationships and parenting (Wiguna et al., 2010).

Inadequate parenting will have an impact on

children development, namely parents who are

authoritarian children will tend to be hostile and

rebellious. Children whose parents are permissive

tend to behave freely or uncontrolled and in children

whose democratic parents tend to avoid anxiety

chaos (Yusuf, 2009).

This study aimed to assess the major chronic

thalassemia pain conditions which include:

emotional and behavioral disorders by using the

standard instrument in order to detect psychosocial

problems of children aged 4 - 17 years. The

instrument called the ‘Strength and Difficulties

Questionnaires’ (SDQ). SDQ has become one of the

most widely used standard measurements in child

psychology to evaluate behavioral and emotional

problems. Research conducted by Riyana & Riza

(2017) mentioned that there is a behaviour disorder

in major thalassemia children. It was found there

were 22 children (73.3%) with disrupted categories

from children with internal behavioral disorders.

Whilst for children with external behaviour, there

were 12 children (40.0%) from 30 children with

major thalassemia is classified as a normal category.

2 METHODS

2. 1 Study Design

This is a descriptive quantitative study with cross

sectional design. The respondent in this study is 117

parents who have children with thalassemia aged 4 -

17 years. The data was collected consecutively in the

provincial referral public hospital in Banda Aceh.

2.2 Instrument

Data collection tools used in this study is SDQ

instrument consisting of three parts; parent

demographic data, child demographic data, and an

existed questionnaire “Strength and Difficulties”

Questioner consists of 25 questions and divided into

5 sub-variables namely, 1) Emotional symptoms, 2)

Behaviour changes, 3) Peer relationships, 4)

Hyperactivity, and 5) Prosocial behaviour. Each sub-

variable consisted of 5 questions (Goodman, 2010).

This SDQ questionnaire has been translated to 87

languages around the world including Bahasa

Indonesia.

2.3 Data Analysis

The scoring template is available on the SDQ

website. The total score of each aspect also the

overall result of the 5 sub-variables are classified

with normal, borderline, and abnormal categories.

Demographic data is analysed with the univariate

analysis.

3 RESULTS

Based on the research conducted on 117

respondents, the following results were obtained:

Table 1: Demographic Data of Parents of Children with

Thalassemia.

Demographic Data

Percentage

N=117

Age

17-25

26-35

36-45

2.6

38.5

59.0

Gender

Male

Female

33.3

66.7

Education

Elementary -Junior High School

Senior High School

University

25.6

64.1

10.3

Occupation

Farmers

Labourers

Housewives

Entrepreneur

51.3

2.6

41.0

2.6

Based on table 1, it can be concluded that most

respondents who have children with thalassemia are

generally in the late adults with the average age of

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256

38 to 45 years old (59.0%). Most children come to

hospital with their mother (66.7%). Parent education

level is on senior high school (46%). Most parents

(51.3%) work as farmers.

Table 2: Demographic Data of Thalassemia Children.

Demographic Data Percentage (%)

N= 117

Age:

Toddler 20.5

School Age 46.2

Early teenage 30.8

Late teenage 2.6

Gender:

Boy 43.6

Girl 53.8

Education:

No Education 41.0

Elementary School 48.7

Junior High School 10.3

Family order:

First child 51.3

Second child 7.7

Third Child 30.8

Fourth child 7.7

Fifth child 2.6

First Diagnosed

0-1 years old 66.7

2-3 years old 30.8

4-5 years old 2.6

Based on table 2, it can be concluded that 46.2%

thalassemia children are in the school age and come

to do the treatment at the provincial referral public

hospital in Banda Aceh. 53.8% of the children who

were doing the thalassemia therapy are girls. Most of

them are in elementary school (48.7%). More than

50% of the children with thalassemia are the first

children in the family. They were first diagnosed on

the age below 1 year old (66.7%).

Table 3 shows the result of each aspects of the

emotion and behaviour of children with thalassemia

in Aceh. For emotional symptoms shows that 74.4%

children are in abnormal category and 76.9 %

children with thalassemia has abnormal behaviour

issues. In regards with peer relations with other

children, 59% are in abnormal category. 84.6%

children with thalassemia have hyperactivity

disorder and lastly 69.2% of the children have

problems with prosocial behaviour in abnormal

category.

Table 3: Distribution of each Aspect of Emotions and

Behaviour of Thalassemia Children.

Aspects

Category

Normal Borderline Abnormal

(%) (%) (%)

Emotional

symptoms

15.4 10.3 74.4

Behavioral

issues

12.8 10.3 76.9

Peer relations

33.3 7.7 59.0

Hyperactivity

disorder

10.3 5.1 84.6

Prosocial

behaviour

7.7 23.1 69.2

Table 4: Total distribution of total score of emotional and

behaviour aspects children with thalassemia in Aceh.

Category (%)

Normal 4.1

Borderline 6.2

Abnormal 89.7

Total 100

From 117 respondents, total score of all aspects

measured namely emotional symptoms, behaviour

changes; peer relation, hyperactivity and prosocial

behaviour, 89.7% of the children with thalassemia in

Aceh is in abnormal category.

4 DISCUSSION

Emotions are responses or reactions of individuals to

stimuli, feelings and desires both positive and

negative. The cognitive theory view states that

emotions are more determined by the results of

individual interpretations of an event, and then

emerge changes internally in the body. Such

changes, for example, changes in facial expression,

tears out, and reddened eyes (Notoadmodjo, 2013).

The results of the study found that many

children had restless responses, fast breathing and

banging during blood transfusions. This is in line

with the research conducted by Putri, Mardhiyah &

Widianti (2015) who said that the results of the

response most frequently indicated by patients with

thalassemia at the time of transfusion took place

were that almost all of them showed a response

requesting significant emotional support in people

(84%).

Emotional and Behavioral Aspects of Children with Thalassemia in Banda Aceh, Indonesia

257

This is also related to research by Mazzona et

al. (2009), which says that thalassemia children tend

to experience high emotional temperament and poor

socialization. Researchers argue that emotional

symptoms in thalassemia children do tend to be

more emotional, as evidenced by research showing

an abnormal category of 74.4%, because sufferers

feel different from others, and there are still people

who think thalassemia is an infectious disease.

Based on table 3 it was found that behaviour

problems in children with thalassemia in Aceh are in

an abnormal category (76.9%). It is on-going

opposing behaviour without serious violations of

social norms or the rights of others. This behaviour

problem is a difficult problem often shown by

children such as hitting, fighting, mocking, refusing

to obey other people's requests (Istiqomah, 2017).

According to Rescorla et al. (2007) as cited in

Halimah, Allendekania, & Fajar T W (2016), the

next behaviour change that occurs is the problem of

decreasing attention. The risk of this problem is

influenced by gender, ethnicity, and mother's

education, adolescents with male sex increase the

risk of decreasing attention.

The results of the study found that many children

had behavioral changes starting from facing down

when the researcher invites to speak, and looks very

nervous. This is in line with the research of Riyana,

& Riza (2017) which says that thalassemia children

experience behavioral disorders as much as 73.3%.

Another study by Halimah, Allendekania, &

Waluyanti (2016) says that adolescent boys with

thalassemia have a higher risk of experiencing

behavioral problems such as anxiety problems,

social problems, and problems with less attention.

Although, it does not rule out that behavioral

problems could also occur in adolescent girls. Other

factors that increase the risk of behavioral changes

are the ethnicity, multi transfusion, maternal

education, and the involvement of next of kin and

relatives.

Based on the table 3, peer relationships in

thalassemia children is in the abnormal category

(59.0%). Children are less able to socialize with

their peers both at home and at school. The difficulty

of children in socializing often makes children less

accepted by their peers. This could limit the children

in interacting actively within their peers (Istiqomah,

2017). The results of the study found that many

thalassemia children have poor relationships with

their surroundings or peers. This is inherent with the

research of Maghfiroh et al. (2014), who said that

almost half of thalassemia children had low feelings

of being accepted in a friendship environment. Thus,

self-esteem is obtained from one self and social

interaction with peers. Individuals will feel high

self-esteem if they often experience success.

However, there are influencing factors such as

parents and peers that greatly affect the development

of self-esteem. If children have good peers, they

could increase their self-esteem.

Researchers argue that the social environment

has a relationship with peers. Therefore, the

difficulty of socializing often makes children less

accepted by their peers. This study showed an

abnormal category of 59% for peer relation aspect of

the children with thalassemia. The most important

thing about peer groups is to provide sources of

information and comparisons about the world

outside the family, peer interactions that have their

peer to play a special role in socio emotional

development.

Researchers argue that many children tend to be

more silent and unwilling to play; this is evidenced

by the results of the study showing 84.6% abnormal

categories in hyperactivity disorder. Although

thalassemia children are not allowed to overact,

nurses should provide counselling about child

development, starting from motoric training and

playing according to their age, but within limits they

do not force children to play excessively. The

researcher found that many thalassemia children

who are not able to move much and prefer to be

quiet, if they play only briefly but not too much

because the child is easily weakened. This is in line

with the research of Fetriyah, et. Al (2016), which

explains that most mothers regulate children's daily

activities. This is so that rest and activity remain

balanced, so that the mother gives direction to the

child to rest because if you do too much activity and

lack of rest will affect Haemoglobin levels in the

blood and can affect health in general.

The condition of children with thalassemia also

affected the relationship with their families. It could

potentially interfere with their welfare as individuals

and disrupt their functioning socially. The research

conducted by Indanah (2010), found that prosocial

behaviour plays an important role in psychosocial

support from family and peers. The family play a

role by helping to control the behaviour of children

facing physical and psychological changes. Indanah

said only 59% of respondents reported getting peer

support. Prosocial support and behaviour are mostly

indicated by the involvement of friends in social

activities that do not drain the child's energy.

Researchers argue that there are still many children

who lack of prosocial relationships with their peers.

This is evidenced by the results of this study

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showing an abnormal category of 69.2% in prosocial

behaviour, teachers and nurses should provide

examples of behaviour, guidance and motivation to

raise children's awareness of other people's feelings

as well as awarding prosocial behaviour in

thalassemia sufferers, situations and the hospital

affects children's opportunities to develop prosocial

behaviour.

The emotional and behavioral disorders in

children with thalassemia have complex

characteristics. These characters consist of moving a

lot, fighting behaviour and sometimes being alone

(Istiqomah, 2017). The researcher argues that the

high number of emotions and behaviour of

thalassemia sufferers that cause a decrease in self-

esteem. The result of this study showed an abnormal

category of 89.7% of emotional and behavioral

aspects of children with thalassemian in Aceh. The

description of emotional and behavioural aspects of

children with thalassemia is also influenced by the

demographic data of children and parents such as

gender, child's age and parental occupation. This is

in line with research by Aji et al. (2009) mentioned

that thalassemia suffer a poor quality of life because

of the changes in their psychosocial aspect.

Thalassemia children have a lifelong blood

transfusion where at these times medical treatment

usually requires non-cheap medical expenses. In

addition, long-term treatment can change all aspects

of life, not only for patients but also for their

families.

5 CONCLUSION

All the participated children with thalassemia,

measured with the ‘Strengths and Difficulties

Questionnaire’ (SDQ) showed that the emotional

and behavioral aspect of the children with

thalassemia is in abnormal category (89.7%).

Besides providing physical and medical cure to the

children who suffer from thalassemia, care givers

should also consider the emotional and behavioural

aspects of the children. Hence, it is suggested that

the medical workers keep educating the parents

regarding the emotional and behavioural aspect of

children with thalassemia.

ETHICS APPROVAL

This study holds ethical approval from Ethics

Committee of Faculty of Nursing, Syiah Kuala

University in Banda Aceh, Indonesia.

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