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Respati Yogyakarta Nursing Journal, 4 (1), January 2017, 112-117

RELATIONSHIP BETWEEN THE EXPERIENCE OF PARENTS IN THE


QUALITY CARE OF CHRISTMAS LIFE OF PALSY IN YOGYAKARTA 2016
Zenni Puspitarini *)
Undergraduate Study Program in Nursing & Professional Ners, Faculty of Health
Sciences, Respati University Yogyakarta, Jl Raya Tajem Km 1,5 Maguwoharjo,
Depok, Sleman, Yogyakarta 55282

Abstract
[Relationship between the experience of parents in the care of the quality of life of
children cerebral palsy at Yogyakarta 2016] Cerebral Palsy (CP) is a disturbance
of motion and non-progressive body posture which is caused by the abnormality
or deformity of developing brain. Motion and body posture chronic disturbance in
CP children will cause the decreasing function and inability to do daily activities.
The role of parents in caring of CP children affects the quality of life of the CP
children, but there is not research in Indonesia regarding the experience of parents
in providing care of children suffering from CP.Based on this situation, the
researcher wanted to understand factors related to the quality of life in CP children
in The Special Region of Yogyakarta. The Objective of research is to understand
relationship of parent’s experience in caring related to the quality of life in CP
children in The Special Region of Yogyakarta. This research was an analytic
observational research with cross sectional design. There were 38 respondents
involved in this research. Variable in this research were parent with CP children’s
perception towards healthcare providers was assessed using Measure of Process of
Care (MPOC). Bivariate data analysis was done using Pearson correlation test.
Result of research score of relation the parent’s experience about caring to quality
of life in CP children had p=0.303, r=-0.172. The parent’s experience towards
service providers in CP children care were not significantly related to the CP
children’s quality of life.

Keywords: Cerebral Palsy, Quality Of Life, MPOC


Preliminary
Cerebral Palsy (CP) is a non-progressive disorder and posture caused by
abnormalities or damage to the immature brain. The impact of this disorder is
compounded by other disabilities such as epilepsy, disruption in learning, and
behavioral and emotional problems (Preedy & Watson, 2010). Common disorders
that occur in children with CP include movement and posture disorders
(spasticity, muscle weakness and decreased coordination), impaired sensation,
perception, cognition, communication, behavior, epilepsy, and secondary
musculoskeletal problems (Rosenbaum et al., 2006) . Comorbid disorders and
pain that often accompanies CP children will have a negative impact on the
quality of life of CP children (Parkinson et al., 2010).
The World Health Organization (WHO) defines quality of life as
"individual perceptions of the position of their lives in the context of the cultural
system and the values in which they live, and relates to their goals, expectations,
standards and attention" (World Health Organization, 1997). Research shows that
pediatric patients and adolescents with CP have impaired functional and
psychosocial quality of life when compared to normal children (Oeffinger et al.,
2004). Many studies show that parents report a lower QOL for their children who
suffer from CP (in all aspects of QOL), their own children usually assess the
emotional and social domains are not much different from the value of healthy
peers. Parents with children who have severe levels of disability often report
better quality of life in the psychosocial domain than children with moderate
levels of disorder. This consistent discovery shows that children who suffer from
CP are able to adjust themselves fairly well to all their limitations and can still
achieve a satisfying quality of life (Preedy & Watson, 2010). Previous research
conducted by Arnaud et al. (2008) explained that there is no evidence between
children with disabilities from low socioeconomic levels who have low QOL than
children with disabilities from high socioeconomic levels. This is contrary to the
results of research conducted by Glinac et al., (2013), which states that CP
children with low and middle socio-economic status have lower HRQOL than
healthy children with low and middle socio-economic status.
The results of the latest research, show that the perceptions and
experiences of parents with family-centered professional support relate to the
quality of family life (Davis & Gravidia-Payne, 2009). Because of this the
researchers want to know and measure the experience of parents who have
children with disabilities, especially parents' perceptions of the care that has been
received throughout the year from health care providers.
By using the Measure of Processes of Care (MPOC). Research on factors that
influence the quality of life of CP children has been carried out abroad but there
have not been found factors related to quality of life in CP children in Indonesia
and have not been found using the MPOC questionnaire to measure the
experience of parents who care for CP children, therefore the researchers wanted
to know the factors related to the quality of life in children with CP in the DI
Yogyakarta area.

Materials and Methods


This research is a type of non-experimental research using cross-sectional design.
This research was carried out in August - November 2015. Research sites in
SLBN 1 Bantul, SLB Krida Mulia 1 Gunungkidul, SLB Krida Mulia 2
Gunungkidul, and WKCP Kulonprogo therapy. The sampling technique used was
purposive sampling with the number of respondents 38 people. Inclusion criteria
in this study were CP children aged 6-18 years, parents, guardians of children or
caregivers who accompanied CP children for at least the last one year, CP
children who underwent routine therapy or attended school activities and were
willing to become respondents. The instrument in this study is the questionnaire
PedsQLTM-CP Module Version 3.0 and Measure of Process of Care-20 (MPOC-
20).
Results
a. Characteristics of respondents

Table 1. Distribution of CP characteristics of child respondents (N = 38)

Frekuensi Persentas
Karakteristik (f) e
(%)
Jenis kelamin
Anak
CP
18 47,4
Laki – laki
20 52,6
Perempuan
Usia Anak CP
(tahun)
4 10,5
5–7
18 47,4
8 – 12
16 42,1
13 – 18
Tempat tinggal
Bantul 8 21,1
Gunungkidul 11 28,9
Kulonprogo 8 21,1

Based on the table above, the results of this study found that the average age of
CP children involved in this study was 11.73 + 3.23 years. The highest number of
motor function levels assessed based on GMFCS is level IV as much as 47.4%
while the number of motor function is at least 10.5% having gross motor function
at level I. Respondents of CP children who attend routine therapy programs are
57.9% and those who follow school program as much as 89.5%. Respondents of
CP children who lived only with their mother (orphan) were 5 children (13%).

Table 2. Distribution of characteristics of parents and children with CP (N = 38)

Persentas
Karakteristik Frekuensi e
(f) (%)
Usia
20-29 1 2,6
30-39 10 26,3
40-49 19 50
50-59 8 21,1
Karakteristik
Ayah
Pekerjaan
TNI AD 1 2,6
Swasta 16 42,1
Wirausaha 6 15,8
Buruh 8 21,1
Petani 2 5,3
Pendidikan
SD 3 7,9
SMP 6 15,9
SMA/SMK/ST
M 19 50
D3 0 0
S1 5 13,2
S2 0 0
Karakteristik Ibu
Pekerjaan
Bidan 1 2,6
Guru 2 5,3
Swasta 3 7,9
Wirausaha 2 5,3
Petani 5 13,2
IRT 25 65,8
Pendidikan
SD 7 18,4
SMP 5 13,2
SMA/SMK/ST
M 21 55,3
D3 1 2,6
S1 3 7,9
S2 1 2,6
Hubungan
dengan
Anak CP
Orangtua 34 89,5
Nenek 2 5,3
Bibi 2 5,3
Sleman 5 13,2
Yogyakarta 6 15,8
Level GMFCS
I 4 10,5
II 6 15,8
III 2 5,3
IV 18 47,4
V 8 21,1
Terapi rutin
Ya 22 57,9
Tidak 16 42,1
Sekolah
Ya 34 89,5
Tidak 4 10,5

The majority of parents or caregivers from CP children are in the age range 40-49
years, mean parents are 42.68 with SD 6.90 years. Parents of CP children who act
as fathers mostly work in the private sector as much as 42.1% and mothers are
mostly housewives as much as 65.8%. Education status of parents of CP children
respondents both father and mother most graduated from high school / vocational
school / STM as much as 50% of fathers and 53.3% of mothers. When the study
took place not all parents accompanied children for therapy or school, there were
2% of grandmothers and aunts accompanying CP children while 89.5% of their
parents were alone.
The mean value of quality of life in children with CP is different at each level of
gross motor function. The lower level of gross motor function indicates the higher
mean value of quality of life. Not all domains show a consistent mean value
decreasing from level 1 to level 5. This may occur because the filling of the
quality of life questionnaire is carried out by parents and is not done directly by
CP children. Therefore parents give an assessment of the quality of life of CP
children based on their perceptions and what they experience while accompanying
CP children. Talk and communication domains that consistently show a decrease
in quality of life in children with level 1 to level 5.
The mean value of quality of life in Table 3 below shows that CP children who
undergo school and therapy activities have a higher quality of life in 6 domains
than CP children who only attend one of the school activities or therapy. The
mean value in the fatigue domain is higher in CP children who attend one of the
school activities or therapy compared to CP children who attend school and
therapy activities.
Table 3. Comparison of mean quality of life between CP children attending
school-therapy activities
Mean + SD
Domain Sekolah dan Sekolah atau
terapi terapi
Aktivitas sehari- 35,4
hari 42,13+ 34,74 1+ 33,95

Aktivitas 40,9
sekolah 42,70+33,43 4+ 38,72

Gerak dan 46,7


66,11+26,32 5+33,68
keseimbangan
72,0
Nyeri 72,22+26,66 8+26,53

58,1
Kelelahan 56,25+25,72 2+31,81

54,2
Aktivitas makan 74,44+28,12 5+37,84

Bicara dan 65,3


67,01+33,40 1+36,47
komunikasi

Lama bersama anak


Sejak lahir 26 68,4
Sejak usia 1- 6 bln 3 7,9
Sejak usia 7 - 11
bln 5 15,2
Sejak usia 12 – 4 10,5
24bln
In Table 4. the following shows that the largest average is in the pain domain
which means that on that domain CP children have the highest quality of life
among the 6 other domains, because the higher the quality of life score shows the
higher quality of life of CP children respondents . The mean of the SES variable
shows at the number 27.7 which shows the average socioeconomic status of the
respondents is low, because when viewed from the standard standard value of
Hollingshead Scale the mean value is 37 with the lowest value of 8 and the
highest value of 66.

Table 4. Average (standard deviation), median (min-max) quality of life score for
each domain and respondent SES with CP children (N = 38)
Mean +
Domain N SD Min-
Maks

Aktivitas
sehari- 38,60 +
38 34,02 1-5
Hari
Aktivitas 41,78 +
sekolah 38 35,83 1-5

Gerak dan 55,92 +


38 31,58 1-5
keseimbangan
72,15 +
Nyeri 38 26,22 1-5

57,23 +
Kelelahan 38 28,71 1-5

Aktivitas 63,81 +
makan 38 34,68 1-5

Bicara dan 66,11 +


38 34,59 1-5
komunikasi

Table 5. Average (standard deviation), median (min-max) MPOC score for each
respondent's domain of children Cerebral Palsy
Mean +
Domain N SD Min-
Maks
Keaktifan dan
kemitraan 38 3,85+ 1,84 1– 7
Pemberian informasi
umum 38 4,18 + 1,50 1 – 7
Pemberian informasi
khusus
38 4,80 + 1,80 1 – 7
tentang anak
Koordinasi dan peduli
anak
dan keluarga secara 38 4,51 + 1,59 1 – 7
Komprehensif
Menghormati dan
38 5,11 + 1,22 1 – 7
perawatan suportif

The score distribution on the MPOC questionnaire shows that each domain has a
mean value of 4 or almost close to 4, which means parents report that health care
providers "sometimes" meet the needs of parents to provide care for their children.
The highest mean value is 5.11 in respect and supportive domain, which means
that in this domain most parents perceive that health care providers more often
meet the needs of parents in providing care for their children. Domains with the
lowest mean value (3.85) are activeness and partnership, this shows that health
care providers do not more often meet the needs of parents in providing care for
their children.

b. MPOC's relationship with quality of life

Table 6. MPOC correlation with quality of life


Variabel P r
Pengalaman
orangtua
mengenai
perawatan 0,303 -0,172
yang diterima

The results of statistical analysis show that parents' experience of health care
providers is not related to quality of life (p> 0.05).

Discussion
a. Distribution of quality of life of parents' experience regarding care
received
Pain usually interferes with physical function, school, daily care, sleep
and mental health activities. In addition, chronic pain can have a negative impact
on HRQOL, limiting life satisfaction and health experience in CP patients
(Parkinson et al, 2010, Riquelme et al., 2011). Nearly two thirds (62%) of the
study population with CP experienced recurrent musculoskeletal pain, and age
was the only significant predictor. Most children report the severity of recurrent
moderate musculoskeletal pain. Severity of pain is not affected by gross motor
function (Ramstad et al, 2011).
The ability to speak and communicate in children with cerebral palsy
consists of understanding (understanding what others are talking about or
receptive language skills) and what is being said (expressing what is desired or
expressive language skills) (Haak et al, 2009). Motoric disorders can limit speech
clarity and movement, cognitive impairment can cause speech delay and language
development and writing (Pennington 2008).
The most frequently reported characteristics deteriorate with reduced
balance. Balance is an important part of walking function, and balance disorders
have been found in children with CP (Burtner et al., 2007). Berrin et al. (2007) in
his study stated that children with pain tend to experience more fatigue, which in
turn is associated with low school function. Previous research conducted by
Vargus-Adams (2005) states that cerebral palsy children have lower scores on
physical activity and everyday compared to normal children population, this can
be caused by cerebal palsy children experiencing permanent disruption in the
development of movement and posture, causing cerebral palsy children to
experience limited physical activity, especially in daily activities (Smits et al.
2011).
The average value in the fatigue domain is higher in CP children who
attend one of the school activities or therapy compared to CP children who attend
school and therapy activities. This happens because the CP children who attend
school activities and therapy need more energy to undergo activities this, so
parents report that CP children are more often seen tired.
School activity domains have a high quality of life compared to daily
activities but lower than the other 5 domains. School activity domains as much as
50% of children always have difficulty using scissors and as many as 26.3% of
children do not have difficulty writing or drawing using a pen or pencil. Berrin et
al. (2007) in his study stated that children with pain tend to experience more
fatigue, which in turn is associated with low school function. However, children
with greater pain also experience lower school functions that do not depend on the
fatigue they experience.
In this study no mean values were approaching 7 from the results of
filling in the MPOC-20 questionnaire, which means that according to the
experience of parents, there are no health care providers who "always" meet the
needs of parents in providing care for their children. In this study there is a
provision of general information about CP children and activeness and
partnerships have a low mean value. This may occur because the interaction
between professional personnel in schools and places of therapy is still not
ongoing. Raghavendra et al. (2007), shows that professionals need to provide
verbal and written information so parents can make decisions. They must also
ensure that the information provided is important, timely and in certain situations.

b. MPOC's relationship with quality of life


Previous research conducted by Tessier et al. (2014) which stated that
one measure of family-centered care, provided care coordination assistance was
significantly associated with the psychosocial domain of quality of life, in a
multivariate model to control the measured comorbidity level of the FCC.
This finding contradicts previous findings that found an association
between FCC and quality of life for families with children with special needs
(Davis & Gavidia-payne 2009). This difference arises because perhaps the parents
of CP children in this study do not have a CP community that can support the care
of CP children. This happened because they claimed they did not know
information about the community. Almasri et al. (2014) suggested that family
acceptance perceptions of the FCC were linked to the existence of communities,
finances, family support and resource fulfillment services. The previous literature
on family centered service (FCS) has shown that families of children with special
needs reveal unmet needs regarding information (Raghavendra et al., 2007).
services are encouraged to pay more attention to effective communication and
information exchange with families. Providing the information needed empowers
families and allows them to make decisions and reduce feelings of anxiety and
stress (Dempsey & Keen 2008).

Conclusion
Based on the research objectives, the results of data analysis and discussion
carried out can be concluded that the experience of parents towards health care
providers in meeting the care needs of CP children has no relationship with the
quality of life of CP children.

Some suggestions that researchers can give include:


1. Other researchers are expected to be able to study more deeply about other
factors (characteristics of children, parenting parents, socioeconomic
status, etc.) that can affect the quality of life so that health workers and
other professionals can help CP children improve their quality of life.
2. For nurses, they are expected to be able to act as educators for families
with CP children and cooperate with other health workers or other
professionals in providing care such as therapy or providing other health
information for CP children or for families. In addition, so that nurses in
both clinics (hospitals) and communities can carry out routine care for CP
children and collaborate with doctors to monitor the development of CP
children both cognitive and motor development, because it can affect the
quality of life of CP children.
3. The school or rehabilitation place is expected to be able to
a. Provide written information in the form of notes on the development of
CP children on a regular basis, for example every month on the fourth
week.
b. Provide information about the care of CP children using leaflets or
guidebooks given to parents, so that families can read and understand
about the care given to CP children
c. conducting routine meetings, for example every quarter to provide
parents with consultation time for further development and treatment

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