Perception of Family Burden Having Children with Mental
Retardation
Shanti Rosmaharani, Iswanto Karso, Rifa'i, and Rodiyah
Bachelor of Nursing Program, Stikes Pemkab Jombang, East Java, Indonesia
Keywords: Burden, Family, Mental Retardation.
Abstract: Having a child with mental retardation who has a variety of dependence of parents, create a special burden
for the family. The purpose of the study is to determine the perception of the burden which felt by the family
in caring for children with mental retardation. The design of study was qualitative with phenomenologyical
approach. Instrument derived from the researcher with the subject of research using purposive sampling. Data
collection technique used interview and observation techniques. Data analysis techniques were done
interactively or continuously. The validity of data used member check and triangulation. the result showed
that the burden felt by the families who care for children with mental retardation was categorized into two
classification, namely objective and subjective burden. Based on the above study showed that families with
mentally retarded children made the most perceived burden was the economic burden (objective burden) felt
heavier than the feeling or psychological burden (subjective burden) because of the objective burden as the
effect was greater to the whole family members when compared to feelings of sadness, shame whose impact
could only be felt by care giver only.
1 BACKGROUND
Mental retardation is an inability of intellectual
function, with IQ is less than 84, before the age of 16,
and is accompanied by obstacles in adaptive behavior
(Pratiwi 2013). Children with mental retardation
requires special care and full support from parents
and family. The effectiveness of various programs for
handling and upgrading the lives of mentally retarded
children depend on the participation and support from
families. Therefore, it takes a way to manage stress
and optimizes the roles in parenting and optimizing
the survival by mental retardation.
WHO data (World Health Organization)
mentions that mental retardation experienced about 1-
3% of the population in Indonesia. Mental retardation
is 1.5 times mostly suffered women. The number of
children with mental retardation in East Java are
6,633 people or 61.21% of all children with special
needs in East Java, which numbered 10,836 children
with mental retardation (Idris, 2014). From the
previous research found the improvement of
anxietyas many as 21.4%, economic burden as many
as 52%, physical retirementas many as 37.8%
(Armatas, 2009). The impact of the limitations of
children with mental retardation results in child
dependence on parents so that parents will feel more
burden and exhausted in the process of parenting and
more vulnerable to psychological stress.
The burden experienced by parents is caused by
exhausted or the burden of caring for a mental
retardation that takes extra time in caring for a child's
mental retardation, a high level of patience, unlimited
responsibility, the embarrassment the family has with
the condition of the child and also the stigmatization
effect of the community which affects the lives,
emotions, thoughts, and behaviors of the family, in
this case the parents (Yolanda, 2012).
Some problems that arise in the care of the child's
mental retardation create tension for parents in caring
for the child with the condition that significantly
affect the family and its function. families lose alot of
function such as psychological function, caring
function, education function, socialization function
so that psychosocial problem must be handled
appropriately (Bomar,2004) The purpose of the study
is to determine the perception of the burden which felt
by the family in caring for children with mental
retardation.
Rosmaharani, S., Karso, I., Rifa’i, . and Rodiyah, .
Perception of Family Burden Having Children With Mental Retardation.
DOI: 10.5220/0008331006870690
In Proceedings of the 9th International Nursing Conference (INC 2018), pages 687-690
ISBN: 978-989-758-336-0
Copyright
c
 2018 by SCITEPRESS – Science and Technology Publications, Lda. All rights reserved
687

2 METHODS
The research design was qualitative with
phenomenological approach, which was a research
method based on postpositivism philosophy,
Instruments in this study were researchers
themselves. Sampling used purposive, with focus on
the subject in this study in accordance with the
background of this study. The subject of this study
was family who care the children with mental
retardation in her daily life. Data collection
techniques used in this study were interview and
observation techniques.
The study was conducted in the second week of
December 2018 - the third week of January 2018, at
noon at the informant's house, in Sengon Village,
Jombang Regency, which was approved by the
informant. To know the perception of the burden of
families who have children with mental retardation,
researchers used data analysis techniques: data
reduction, presentation, and conclusion verification.
In this research will use some testing techniques of
data validity: member check and triangulation.
3 RESULTS
Description of the research first informant. First
informant Mrs. R. 48 years old, as housewife, Mrs.R.
has 3 children, the third child has mental retardation
and attends state primary school. Mrs. R's husband is
a helper whose income is uncertain. In everyday that
cares for children with mental retardation was Mrs R
itself, because husband Mrs R should work.
Second informant Mrs. J. 59-year-old housewife
and food seller. Mrs.J has 2 children and the second
child has mental retardation, from the interview Mrs.J
had entered high risk age of pregnancy that is 42 years
old. To care for her child Mrs.J was usually assisted
by her mother. Mrs.J.'s husband worked as a pedicab
driver and has just returned home at night.
Third informant Mr.B 69 years old a retiree has
4 children, the fourth child has mental retardation,
this fourth child was unplanned and had wanted to be
aborted by drinking herbal medicine. For caring the
child was Mrs.B, because Mr. B feels incapable with
his child.
The results of the study was divided in two main
themes they are subjective and objective burden. We
collect the burdens which could not measured such as
feeling become a subjective burden, that provide an
overview of the perceived burden felt by the family
in caring for children with mental retardation. Then
the next theme which can be measured such as
economic aspect, time to care and physical exhausted
become to objective burden.
3.1 Subjective Burden
The interview on how family feelings had been so far
in caring for children with mental retardation.
Researchers difine into several sub them from the
theme. The subjectives burden are :
1 Sad : the family feels unhappy because the
children’s disability
2. Shy : the parents shy cause of the
3. Anxiety : the parents feels anxiety about the future
of children
Here's a brief answer from first informant which
was conveyed to the researcher: “ya lelah sekali
mbak, merawat anak seperti ini, apalagi saya sendiri
harus banyak-banyak sabar…”
Translation : “ yes, I am very tired to cure this child,
moreover I must have big patient… “
Second informant said ”perasaan saya ya campur
aduk mbak kalau ditanya, kadang sedih kadang
jengkel, kadang cemas memikirkan masa depan anak
ini”
Translation : “my feeling is terrible feels, sometimes
I feel sad, anxiety to think the future of them”
While the third informant told me “saya kadang sedih
lihat anak saya, mau jadi apa anak saya kalau besar
nanti, apalagi kalau saya dan istri saya sudah
meninggal. Nanti siapa yang akan merawat..”
Translation : “sometimes, I feel sad to see my son,
how about his future, though when we have died, who
will care him”
Furthermore, the researcher asked, from the
feeling that was delivered was whether it was felt
heavy by the family
First informant said “berat mbak, karena saya
kadang jenuh dengan keseharian merawat anak saya
ini”
Translation : “Its hard, because I feel saturated with
the daily of caring my child”
Second informant said “ini mungkin ujian saya mbak,
yang harus saya terima dengan keluarga saya. Saya
juga agak menyesal karena sebenarnya kehamilan
anak saya ini tidak kami inginkan karena usia saya
sudah tua. Akhirnya saya melahirkan anak seperti itu.
Malu sebenarnya tapi bagaimana lagi..harus
diterima. Bagaimanapun dia anak saya”..
Translation : “This is my problem of life and I must
received with my family , I regret it, because this son
is not wished by us because of my age. I feel shy
actually, but I ust receive it, though he is my son”
INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research
688

Last informant explained “berat mbak, apalagi kalau
harus kumpul dengan keluarga rasanya malu”.
Translation :”Its so hard, even I gather with family, I
feel shy….”
3.2 Objective Burden
The burden ofthe family felt not only in terms of
feelings but also the discomfort conditions that affect
other family members. Researchers also ask whether
the only burden of feeling that is felt heavy by the
family or are there something else?
Finally researcher difine into sub themes included:
1. Economic aspect : the children with mental
retardation needs more financial aspect to cure
the dissability.
2. Time consuming : parents will get a lack of time
to take the rest because they cures the children
and give big attention to them
3. Physical condition : the parents feels tired during
the process of curing the children.
First informant explained “ selain perasaan
jenuh, saya juga memikirkan biaya untuk anak saya
mbak, sekolahnya, makannya dan banyak yang lain.
Sementara hidup saya sendiri kekurangan”
Translation: “beside the saturated feeling, i also think
the financial support of my children, her education,
and so on. While my life is deficiency”
Informants 2 and 3 also said the same thing that
economic conditions become a burden also in caring
for children with mental retardation. Informant 3 also
said that caring for children with mental retardation
took a lot of time and was physically exhausting.
The objective burden most often felt by
respondents was the economic condition. This was in
accordance with the research Khamis (2007) which
stated that the most severe burden felt by the family
was the financial burden. The impact of burden that
is not managed would affect the productivity, quality
of life and family functions.
The researcher also asked which of the two
burdens felt the most. First and second informants
explained that the most perceived burden is the
economic burden compared to the feeling. Third
informant recounts ”jelas lebih berat beban ekonomi,
apalagi saya seorang pensiunan. Sementara anak
dengan kebutuhan khusus membutuhkan banyak
biaya dan lebih sering sakit”
Translation : “the bigger is economic problems,
though i am a retirement while my child need more
financial suppport and health”
4 DISCUSSION
4.1 Subjective Burden
Families were faced with many problems that result
in heavy burden in the family. The number of
limitations possessed by children with mental
retardation was a stressor for the family. The burden
faced also also varies depending on several factors:
community stigma, knowledge, family emotions
(Parish et al, 2012). The impact of the burden itself
varies depending on the family coping mechanism
that manages the burden. The subjective burden felt
by family can affect the family welfare. Which affects
the relationship between family members, until
maked the family's disharmony. Beside that, feeling
of shame also causes psychosocial problems in
families with disturbed social relationships.
Anxiety to the family especially mother was
frustrated so bad impact on each members especially
the function of family care. Family anxiety is not
enough just lowered level but there should be enough
exercise so as to maintain the psychosocial condition
of the family. If unstable family conditions will affect
the atmosphere and comfort of the family, as a family
system consists of family members who interact and
depend on each other. Living together in a physical,
psychological and social environment. In a system the
form of behavioral disorder and child dependence
with mental retadation will disrupt all systems or
family circumstances (Friedman, 2010).
4.2 Objective Burden
Some respondents complained that the burden felt
most heavily is an economic problem, because the
dependence of children made the parents could not
work optimally. Children with mental retardation
required a greater cost to their lives. This was
consistent with the study that absolute burden was a
difficult economic constraint because of the lack of
family income, while children with special needs
required more facilitation than normal children
(Parish et al., 2012).
In this study the average of other family members
could not help earn an extra living because they have
to wait and care for the child's mental retardation at
home, while the average family income was below
the UMR. Another study was conducted by Gonzales
et al (2010), said that the objective burden was more
felt than the subjective burden. The subjective burden
only affected the care giver and usually tries to be
suppressed, while the objective burden would have an
Perception of Family Burden Having Children With Mental Retardation
689

impact on the quality of family life ranging from
decent food, shelter and child education.
Treatment in children with mental retardation
was also time-consuming because of the high
dependence of children and many care giver was less
concerned with his own physical condition that
eventually leads to physical exhausted and
susceptible to disease. From some studies
corroborated there was no significancy between the
perception of the burden that allowed the subjective
burden was not very meaningful compared with the
objective burden.
5 CONCLUSIONS
The conclusion was that the objective burden such as
economic aspect, time consuming and phisical
condition felt heavier than the subjective burden such
as sad, shy, anxiety. Families feel more influence and
have negative effects on the whole family.
Families with children with mental retardation
may share the appropriate role with the whole family
in the care of children with mental retardation, to
manage the burden and stress management. Next
schools more often conduct counseling programs to
ease the subjective and objective burden. The last
Recommended for families who have children with
mental retardation to follow health insurance
programs organized by the government (BPJS) as an
alternative decrease the objective burden.
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family research and theory to nursing practice, 3rd ed.
Philadelphia: Library of Congress in Publication Data.
Friedman, (2010).Keperawatan keluarga teori dan
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Gonzales,C et al (2010). Effect of Family Psychoeducation
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