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UI Proc. HealthMed. Vol. 1
The Relationship between Characteristics of Parent-child and Level Fatigue of
Parents with Autism Spectrum Disorder
Khaula Sahida1, Allenidekania1
1. Bachelor of Nursing Program, Faculty of Nursing, University of Indonesia, Depok 16424, West Java, Indonesia
2. Department of Pediatric Nursing, Faculty of Nursing, University of Indonesia, Depok 16424, West Java, Indonesia
*E-mail: khaulasahida@gmail.com
Abstract
Objectives: Taking care of children with Autism Spectrum Disorders (ASD) impacted parent’s quality of life, such as
fatigue. This study aims to determine the correlation between parent and children characteristics with the level of
fatigue experienced by parents.
Methods: This study used cross-sectional analytic design. Sixty-one parents of ASD children in South Jakarta recruited
by cluster random sampling participated in this study. This study used fatigue scale instrument which adapted and
modified from Chalder Fatigue Scale questionnaire.
Results: Parents with Autism Spectrum Disorder Child tend to experienced fatigue, related to some factors, such as
income (p=0,041; r=-0,262) and child age (p<0,001; r=-0,491).
Conclusion: This study implies that giving attention to parents and children characteristics is important to maintain
fatigue experienced by parents while taking care of their children.
Keywords: Autism Spectrum Disorders, ASD, Child Care, Fatigue, Parents
Introduction
Not all of children born with the normal condition.
Some of them, had special condition or commonly
known as special need children. Based on government
regulation released by women empowerment and child
protection ministry, the children with special needs are
the child who has limitation of physics, mental-
intellectual, social, or emotional which had an effect on
growth and developmental process significantly in
comparison with another child in the similar age.
The number of children with special needs in Indonesia
is increased. Based on World Health Organization
(WHO), the number of special needs children in
Indonesia at 2007 around 7% of the total number of 0-
18 age children (6.230.000 children), and Central
Bureau of Statistic at 2003 showed the number of
disable children aged 0-18 was 361.860 children.1
Autism Spectrum Disorders (ASD) is one of special
need children conditions. There was 1 of 150 children
identified with ASD at 2000 and this number increased
in 2010 to 1 of 68 children identified with ASD.2
ASD is indicated by complex spectrum, neurological
disorders, and developmental disorders which signed
by social interaction and communication deficit, and
also repeated behavior.3 Manifestations of ASD
children became a challenge for their parents. Mothers
of ASD children experienced difficulties while handle
their ASD child’s behaviors and disabilities.4
ASD children also affected to another parent’s life
aspects. The previous research showed that there were
significant differences which concluded that parents
with ASD children have worsening quality of life,
either mentally or physically, and lower optimism in
comparison with parents who have typically
developing children.4
Family with ASD children have a risk toward social
isolation, unbalance role, depression, anxiety, grieve,
guilty feeling, extreme sacrifice, financial difficulties,
and sleep disorders.5 The needs of care the ASD
children also affects family financial aspect. The
average of health care cost for children with ASD in
the US was around $ 10.709 per child, six times higher
than another child without ASD.6
Around 22,8 percent parents with special need children
experienced stress and this number was higher than
parents who had no ASD children which only 8,6
percent of them who experienced stress.7 In real life,
parent with ASD children experienced trouble in their
life, stress, and pressure because of daily activities.8
The accumulation of stress and rejection in parents can
cause fatigue. Behavioral disorders in ASD children
contribute to fatigue and stress of the mothers.9 In
another qualitative study in mothers with ASD children
demonstrated that mothers felt very fatigue because the
time of taking care of their children.10
Parental fatigue not only impact to parents, but also
their children. Fatigue can bother daily activities and its
influence the parent’s physically and psychologically
conditions. Parental fatigue can impact the pattern of
care which indirectly may impact growth and
development of children. The high level of fatigue
related to lower warmth of parenting (such as: showing
love), high level of unfriendly care (such as: irritable,
and frustration), and lack of parent involvement in
playing and study activities with their children .11
In brief, fatigue in parents with ASD children is a real
condition that can found in most parents. This
condition has continuously effect to parents and their
children. However, research about fatigue in parents
with ASD children was limited and not defined yet
about factors which caused fatigue especially for
parents with ASD children. Therefore, this study
performed by the authors to found and enrich the
literature about fatigue in parents with ASD children
and its factors.
Methods
This study used cross sectional design. The participants
in this study were the parents with ASD children at
South Jakarta. The participants were 61 parents.
Cluster random sampling used to recruit the
participants. The total of cluster used in this study was
nine clusters (sub districts) that had school for children
with special needs.
This study measured parental fatigue by using adapted
and modified Chalder Fatigue Scale. This instrument
also adjusted to parents with ASD children’s condition.
The total number of instruments was 16 items with
alpha Cronbach 0,857. Spearman test used for analysis
the data.
Results & Discussion
The result of parental fatigue showed that average
score of parental fatigue was 39,23, minimum score
was 22, and maximum score was 61. The number of
fatigue score indicated that there was no parent who
had score 16, which means there was no parents who
did not experience fatigue while taking care of their
children. This result was related to the previous study
which showed that mothers who have disable children
experienced emotional exhaustion that related to
physical and emotional fatigue which indicated by
headache, gastrointestinal disorders, high blood
pressure, sleep disorders, easy to fell physical fatigue,
bored, anxiety, pessimistic, difficult to adapt, isolation,
angry, loneliness, and worried.12 Fatigue and stress are
a common phenomenon which can be occurred to
mothers who have ASD children.13 In another study
also found that mothers with ASD children reported
have higher fatigue score than mothers who have
normal children.14 Table 1.
Parent’s Fatigue Level (n=61)
Variable Mean Median Standard
Deviation Min-
Max
Fatigue
Level 39,131 39 9,124 22-61
Table 2.
Relationship between Parent characteristics and The Level of
Parent’s Fatigue (n=61)
Variable r
p
Relation to
ASD Child Father 0,104 0,426
Mother
Age Early Adulthood -0,020 0,880
Middle Adulthood
Late Adulthood
Ethnic
Batavia
-0,225 0,081
Sundanese
Javanese
Batak
Others
Religion
Islam
0,077 0,553
Christian
Protestant
Hindu
Buddha
Others
Educational
History
Elementary School
-0,164 0,206
Junior High School
Senior High School
Bachelor Degree
Master Degree
Doctoral Degree
Others
Occupation
Unemployment
-0,007 0,955
Entrepreneur
Private sector
employee
Civil sector employee
Laborer
Others
Income < 3.100.000 IDR -0,262 0,041*
3.100.000 IDR
> 3.100.000 IDR
*p < 0,05
The relationship between parent and ASD children,
either father or mother did not show significant
correlation with the level of fatigue. However, there
was a difference between average fatigue score of
mother and father. Average fatigue score of mothers
was 40,273, otherwise father was 37,786. Mother
experienced body pain, fatigue, tired, mental health
disorders, more than father.15 In other study which
related to fatigue based on gender view, showed that
women lean to experienced emotional exhaustion when
got excessive works than men.16
This study found that there was no correlation between
parental age and the level of fatigue. In contrast, the
previous study showed that there was derivation of
functional system due to increment of age.17 This
difference may occur because the data distribution
dominated only by one age group.
In addition, ethnic variable also did not show a
significant correlation with the level of fatigue. The
reason that can explain is no difference of coping
mechanism at each ethnic. Otherwise, it is needed to
explore in further research about coping mechanism in
certain ethnic. According to the study, social status can
influence someone to get response toward pressure.18
Furthermore, this study showed that there was no
significant correlation between parent religions and the
level of fatigue. This different result may be caused by
focused only on religion, not include the religiosity
level. According to the previous study, spirituality and
belief consisted of hope which can be give a power and
motivation to someone.18
Parent education history did not show a significant
correlation with the level of fatigue. Parent with higher
education history expected to have higher level of
parenting knowledge. Nowadays parents can not only
get information from educational curriculum, but also
from mass media or others. It’s about 85% parents get
the information about autism from printed media
(magazine, newspaper, book, etc.) and 55% parents
used electronic media.19
Furthermore, parent occupation did not showed a
significant correlation with fatigue levels. Based on
some studies, work load can influence fatigue. Work
load more than 10 hours contributed to the risk of
accidents which caused by fatigue.20 Besides that,
another risk factor of fatigue that related to workplace
include: shift, unsupported work practice, stress,
burnout, and jobless.21 The cause of different result
from this study and the previous studies are because
this study did not classify the occupation in detail
based on work load, shift, and another work place.
The relationship between parents incomes did not
showed a significant correlation with the level of
fatigue. This relationship showed a negative correlation
which means the higher parent income, tend to be
reduced the level of fatigue. Parent with the low
income inclined to used less information source and
less get support as compared to parent with middle or
high income.22 In other word, parents with lower
income have higher risk to experienced fatigue because
lack of information about parenting and less support
rather than parents with middle or high income.
Table 3.
Relationship between The Amount of Children that Parents
have and The Level Parent’s Fatigue (n=61)
Variable r
p
Amount of children -0,149 0,252
This study also showed that there is no significant
correlation between amounts of children and parent’s
fatigue levels. The relationship showed very weak and
negative correlation. It means that the more children
parents have, lead to reduce the level of fatigue. The
increase of amounts of children in line to elevation of
parent burden, include: emotional burden, financial
responsibility, physical needs, and sacrifice.23 The
difference of result may because there is the difference
of children and family condition.
Table 4.
Relationship between ASD Children Characteristics and The
Level Parent’s Fatigue (n=61)
Variable r
p
Gender Male 0,017 0,896
Female
Age Middle Childhood -0,491 <0,001*
Early Adolescent
Late Adolescent
*p < 0,05
The relation between ages of ASD children and
parent’s fatigue showed a significant correlation.
Otherwise, gender of ASD children did not showed a
significant correlation with the level of parent’s
fatigue. Child age influence the manifestation of ASD,
but the difference of gender did not affect to behavior
disorder of ASD child [24]. Actually, children behavior
disorder contributed to cause parental fatigue.25
Conclusion
There was no significant correlation between parent
gender (p=0,426; r=0,104), parent age (p=0,880; r=-
0,020), parent ethnic (p=0,081; r=-0,225), parent
religion (p=0,553; r=0,077), parents educational history
(p=0,206; r=-0,164), parent occupation (p=0,955; r=-
0,007), amount of children (p=0,252; r=-0,149), and
child gender (p=0,896; r=0,017) and parental fatigue.
In contrast, there was a significant correlation between
parent income (p=0,041; r=-0,262) and child age
(p<0,001; r=-0,491) with the levels of parent’s fatigue.
Conflict of Interest
The authors declare that they have no conflict of
interest.
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