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Respati Yogyakarta Nursing Journal, 4 (1), January 2017, 112-117
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.
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%).
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
58,1
Kelelahan 56,25+25,72 2+31,81
54,2
Aktivitas makan 74,44+28,12 5+37,84
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
57,23 +
Kelelahan 38 28,71 1-5
Aktivitas 63,81 +
makan 38 34,68 1-5
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.
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.
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.
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