Disability and Rehabilitation

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Time burden of caring and depression among

parents of individuals with cerebral palsy

Eun-Young Park & Su-Jung Nam

To cite this article: Eun-Young Park & Su-Jung Nam (2018): Time burden of caring and
depression among parents of individuals with cerebral palsy, Disability and Rehabilitation, DOI:
10.1080/09638288.2018.1432705

To link to this article: https://doi.org/10.1080/09638288.2018.1432705

Published online: 30 Jan 2018.

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DISABILITY AND REHABILITATION, 2018
https://doi.org/10.1080/09638288.2018.1432705

ORIGINAL ARTICLE

Time burden of caring and depression among parents of individuals with cerebral
palsy
Eun-Young Parka and Su-Jung Namb
a
Department of Secondary Special Education, Jeonju University, Jeonju, South Korea; bDepartment of Home Economics Education,
Jeonju University, Jeonju, South Korea

ABSTRACT ARTICLE HISTORY

Purpose: The presence of an individual with disability in a family affects the whole family. Families of Received 11 July 2017
individuals with cerebral palsy (CP) experience increased psychological anxiety and financial problems; Revised 19 December 2017
specifically, parents tend to feel time pressure and struggle to maintain their social and cultural activities. Accepted 22 January 2018
Methods: t-Tests and ANOVA with post hoc Tukey tests were used to compare caregiving time, time pres-
KEYWORDS
sure, and depression between parents. Multivariate logistic regression analysis was used to examine the Cerebral palsy; caregiving
effect of caregiving time and time pressure on depression in parents. time; time pressure;
Results: Regarding depression, 58 (38.2%) respondents scored
16 on the Center for Epidemiological depression; burden
Studies – Depression scale. Respondents supporting a preschool child spent more time than those sup-
porting adults did; those supporting adults reported less time pressure than those supporting individuals
of other ages. Caregiving time’s effect on depression was not supported, whereas increased time pressure
raised the risk of depression.
Conclusions: The frequency of depression among parents supporting individuals with CP exceeded pre-
ceding findings. Time pressure due to support appears to directly predict depression. Total time spent car-
ing appears unrelated to depression.

ä IMPLICATIONS FOR REHABILITATION

 It is necessary to prepare various community and family support systems in order to relieve parental
caregivers’ burden and exhaustion.
 Interventions should focus on parents with higher time pressure than parents with high caregiving
time.
 Physical and psychological difficulties experienced by parents supporting a child with a disability vary
with the child’s life stage, meaning that families’ care burden partly depends on the age of the indi-
vidual with disabilities.

Introduction reported by 26% of parents of children with CP, compared with

Cerebral palsy (CP) is a major disease due to brain lesions. It is
characterized by abnormal posture and restricted cognitive ability
and social development. The restrictions to physical ability charac-
teristic of CP entail that individuals with CP almost invariably
require others’ help with daily activities (e.g., going to the bath-
room and moving) and continuous rehabilitation treatment, how-
ever, the degree of disability and symptoms varies between
individuals. CP typically entails a care burden that affects all mem-
bers of the individual’s family. Specifically, parents of individuals
with CP commonly experience psychological anxiety, financial
problems, time-related pressure, and the restriction of their social
and cultural activity. This care burden negatively affects parents of
individuals with CP, as well as the other family members [1]. It
may reduce the supporters’ subjective welfare and life satisfaction
[2,3]. Increased caregiver burden predicts insomnia and demotiv-
ation and is positively correlated with depression symptom
strength [4]. Meta-analysis indicates that depressive disorder is
more common among mothers of children with disabilities
(including CP) than other mothers [5]. Very high stress was
5% of the general population [6]. Parents’ health, social circum-
stances, and child-rearing practices predict children’s health and
well-being therefore, identifying factors affecting parents’s well-
being is necessary to developing effective interventions.
Previous research on the present topic has typically examined
depression in the primary caregiver, due to its high prevalence.
Depression in parents negatively affects their ability to care for
their children. For instance, longitudinal research indicates that
depression makes mothers less sensitive and responsive to their
children [7] and increases children’s risk of developing internaliz-
ing and externalizing problems [8,9]. Depressed mothers act more
negatively toward their children from infancy through adoles-
cence, compared with non-depressed mothers [10].
Caregiving burden is multidimensional, however, time is a
major construct in it. Caregiving burden has been described in
terms of insufficient available time due to support [11]. Mothers
of children with CP experience additional pressure due to near-
constant care requirements that far exceed typical family time
requirements [12]; this pressure unbalances mothers’ time

CONTACT Su-Jung Nam bluesj@jj.ac.kr Department of Home Economics Education, College of Education, Jeonju University, 303 Cheonjam-ro, Wansan-gu,
Jeonju 55069, South Korea
ß 2018 Informa UK Limited, trading as Taylor & Francis Group
2 E.-Y. PARK AND S.-J. NAM

allocation [13] and may strongly reduce their quality of life, com- Table 1. Participants’ characteristics (individuals with CP and their parents)
pared with mothers of healthy children [14]. (n ¼ 152).
CP, being a disease characterized by high dependency, puts a Characteristics Frequency (%)
heavier burden (particularly in terms of time costs) on supporters Individuals with CP
in comparison to many other diseases. As children with CP require Gender
Male 94 (61.8)
intensive protection and help for a long period, supporters might Female 58 (38.2)
experience role overload due to time burden and a loss of health Age
due to physical fatigue. Furthermore, they are likely to develop Preschool-aged 54 (35.5)
depression as a result of limited opportunities for social network- School-aged 73 (48.0)
ing and social activity participation. In their study on patients with Adult 25 (16.4)
Level of GMFCS
Alzheimer’s disease, Novak and Guest found that supporters often 4–5 107 (70.4)
experience mental problems such as high tension, depression, and 1–3 45 (29.6)
anxiety, as well as time burden [11]. Another study on Alzheimer’s Parents
patients (this one by Burgener and Twigg) reported that Gender
Male 18 (11.9)
supporters’ time burden is a cause for a reduced sense of subject- Female 136 (88.1)
ive peace and life satisfaction [2], while a study by Meyers and Age
Gray on patients with cancer showed that supporters’ time burden 29 20 (13.2)
reduced life satisfaction [3]. Lee and Park’s study reported that 30–39 47 (30.9)
40–49 62 (40.8)
increased time burden among supporters was associated with psy- 50 23 (15.1)
chological symptoms such as depression, insomnia, and demotiv- Employment
ation, and that the higher the burden of support, the higher the Employed 58 (38.2)
level of depression [4]. Unemployed 94 (61.8)
Depression
Numerous factors may affect depression in parents of individu-
16 or greater 58 (38.2)
als with CP. Child and family factors may affect caregivers’ depres- Below 16 94 (61.8)
sion. Arm and gross motor function, seizures, feeding,
communication, intellectual impairment, CP subtype, pain, school-
ing, siblings, and family structure significantly affect parenting diagnosed with other forms of brain lesion such as traumatic brain
stress [6]. Little research has examined the effect of caregiving injury and (2) respondents were caregivers who were otherwise
time burden on stress among parents of children with disabilities, related to the individual with CP (e.g., siblings, children). The data
although this is a potentially important topic [15]. from 152 parents of individuals with CP were analyzed. Table 1
In this context, this study examined depression’s relationship presents participants and their children’s general characteristics.
with caregiving time and time pressure among parents supporting Regarding participating individuals with CP, 94 and 58 were
individuals with CP. The specific research aims were as follows: male and female, respectively (61.8% and 38.2%), 54 were pre-
First, we determined the relationship between the child character- school-aged (0–6 years old; 35.5%), 73 were school-aged
istics (i.e., the child’s gender, age, and condition severity) and (7–18 years; 48.0%), and 25 were adults (
19 years; 16.4%). CP
caregiving time, time pressure, and depression among parents. severity was classified using the Gross Motor Functional
Second, we determined the relationship between parental factors Classification System (GMFCS); 107 participants were Level 4 or
(i.e., gender, age, and employment) and caregiving time, time Level 5 (70.4%) and 45 were Level 1, Level 2, or Level 3 (29.6%).
pressure, and depression among the parents. Finally, we deter- Regarding participating parents, 18 were male (11.9%), 136
mined if caregiving time and time pressure affect the presence or were female (88.1%), 20 were aged 29 years (13.2%), 47 were
absence of parental depression. aged 30–39 years (30.9%), 62 were aged 40–49 years (40.8%), and
23 were aged
50 years (15.1%); 58 were employed (38.2%) and
58 scored
16 on the CES-D (38.2%).
Methods
Data Measures
This study conducted secondary analysis of data collected by Time burden
research examining supportive services and policies for people
with brain lesions [16]. This study followed ethical compliance. Time burden was measured as caregiving time and time pressure.
That survey used one-to-one, individual interviews to examine the Regarding caregiving time, the daily average amount of time
participants’ daily lives as caregivers. The questionnaire comprised spent watching or protecting the individual with CP was meas-
items on general and disability characteristics, support for activ- ured. Time pressure was measured using the following items: the
ities of daily living, social support, and related caregivers. For this caregiver being unable to attend a family gathering due to care-
study, the order of items in the questionnaire was as follows: gen- giving; being unable to attend a meeting of acquaintances,
eral characteristics, time burden, and depression. Interviews took including friends and others; having abandoned leisure activities;
between 45 and 60 min to complete. Participant recruitment areas and being unable to travel or take a vacation due to caregiving.
were selected based on the distribution of individuals registered The specific wordings of these items were as follows: (1) “Were
as disabled according to the Welfare of Disabled Persons Act of you (the caregiver of an individual with disabilities) unable to
Korea. The sample contained 306 people with brain lesions, attend a family gathering, such as of parents, brothers, and sisters,
including 185 people with CP. The inclusion criteria were as fol- because of the person with disabilities (in the last year)?”, (2)
lows: (1) individuals registered as having brain lesions according “Were you (the caregiver of an individual with disabilities) unable
to the Welfare of Disabled Persons Act of Korea, (2) diagnosed to meet with friends because of the person with disabilities (in
with CP by a doctor, and (3) respondents were the parents of peo- the last year)?”, (3) “Did you (the caregiver of an individual with
ple with CP. The exclusion criteria were as follows: (1) individuals disabilities) give up your leisure activities to help the person with
 PARENTS’ BURDEN AND DEPRESSION IN CEREBRAL PALSY 3

Table 2. Caregiving burden and individual characteristics (individuals with CP).

Caregiving timea Time pressure Depression of parent
2 2
Characteristics Mean SD F(g ) or t p Mean SD F(g ) or t p Mean SD F(g2) or t p
Gender
Male 15.47 7.18 0.741 0.460 10.35 3.59 –2.220 0.028 21.89 6.64 –1.970 0.051
Female 14.59 6.85 11.67 3.53 24.13 6.70
Age
Preschool-aged 16.19 6.45 3.200 0.044 11.67 2.70 7.031 <0.001 23.44 7.37 1.272 0.283
School-aged 15.43 6.83 (0.042) 11.04 3.58 (0.086) 21.80 6.15 (0.017)
Adult 12.02 8.19 8.56 4.53 23.79 6.72
Level of GMFCS
4–5 16.47 6.19 <0.001 11.43 3.23 0.002 22.20 5.59 0.857
1–3 11.70 7.93 9.49 4.11 22.88 6.39
a
Hours per day.

disabilities (in the last year)?”, and (4) “Have you (the caregiver of
an individual with disabilities) spent a certain amount of time
without feeling the burden of caring for a person with disabilities
(in the last year)?” Responses used a five-point Likert scale.
Cronbach’s a of time pressure was 0.88 in this study.
The Gross Motor Functional Classification System
The GMFCS categorizes gross motor function in children with CP
as follows [17]. Level 1: walks without restrictions and uses hands
for support. Level 2: walks without assistive devices. Level 3: walks
with assistive mobility devices (e.g., canes, crutches, or walker).
Level 4: has self-mobility with limitations and uses an electric
wheelchair. Level 5: has severely limited self-mobility even with
the use of assistive technology. Bodkin et al. measured the
GMFCS’s interrater reliability at 0.84 [18].
The Center for Epidemiological Studies Depression Scale
Depression was assessed using the Center for Epidemiological
Studies Depression Scale 11 (CES-D-11), a self-report question-
naire. Responses to items use a four-point Likert scale (1 ¼ rarely
or never, 4 ¼ most or all the time). Higher scores indicate greater
depression. The short-form CES-D’s validity has been supported
[19]. CES-D scores
16 indicate “significant” or “mild” depressive
symptomatology [20].
Statistical analysis
Descriptive statistics were used to examine the general character-
istics of individuals with CP and their parents. t-Tests and one-way
analysis of variance (ANOVA) were used to test differences in par-
ticipants’ general characteristics. t-Tests and ANOVA with post hoc
Tukey tests were used to compare caregiving time, time pressure,
and depression between parents.
Pearson’s correlations were used to analyze the correlations
between variables. Furthermore, multivariate logistic regression
analysis was used to examine the relationship between caregiving
time, time pressure, and the presence or absence of parental
depression. All analyses were conducted using SPSS 21.0 (SPSS
Inc., Chicago, IL). Values of p < 0.05 were considered significant.
Caregiving time depended on age (p ¼ 0.44, d ¼ 0.54, 95% CI
[0.10, 0.97]). Parents’ caregiving time differed between preschool-
aged individuals (M ¼ 16.19, SD ¼ 6.45) and adults (M ¼ 12.02,
SD ¼ 8.19), but not between school-aged individuals (M ¼ 15.43,
SD ¼ 6.83) and preschool-aged children or adults. Time pressure
depended on age (p < 0.001, d ¼ 0.53, 95% CI [0.10, 0.97]). Parents
of adults reported different time pressure (M ¼ 8.56, SD ¼ 4.53)
than parents of preschoolers or schoolchildren (M ¼ 11.67,
SD ¼ 2.70). Time pressure did not differ significantly between
parents of preschoolers and schoolchildren. Caregiving time dif-
fered between parents of individuals with Levels 1–3 disability
(M ¼ 11.70, SD ¼ 7.93) and Level 4 or 5 disability (M ¼ 16.47,
SD ¼ 6.19 p ¼ 0.000, d ¼ 0.69, 95% CI [0.34, 1.05]). Time pressure of
caring for an individual with a Level 4 or 5 disability reported
greater caregiving time (M ¼ 11.43, SD ¼ 3.23) than those caring
for an individual with a Levels 1–3 disability (M ¼ 9.49, SD ¼ 4.11),
p ¼ 0.002, d ¼ 0.55, 95% CI [0.20, 0.91].
Time burden and parents’ characteristics
Table 3 presents associations between parents’ characteristics,
caregiving time, time pressure, and depression.
Mothers (M ¼ 11.16, SD ¼ 3.43) reported significant higher time
pressure than fathers (M ¼ 8.71, SD ¼ 11.16, p ¼ 0.002, d ¼ 0.67,
95% CI [0.17, 1.16]). Caregiving time depended on age (p ¼ 0.008,
d ¼ 0.57, 95% CI [0.12, 1.02]). Parents aged 40–49 years spent
more time than parents aged
50 years (Ms ¼ 17.08 and 11.85,
SDs ¼ 6.68 and 7.25, respectively). Caregiving time did not differ
significantly between parents aged
40 years and those aged
30–39 years (M ¼ 15.26, SD ¼ 7.01) or <29 years (M ¼ 12.85,
SD ¼ 6.31).
Correlations among the variables
Table 4 shows the correlations among the variables, including
caregiving time, time pressure, and parental depression. The cor-
relation between caregiving time and time pressure was signifi-
cant (r ¼ 0.280, p < 0.01), as was the correlation between time
pressure and parental depression (r ¼ 0.468, p < 0.01). The correl-
ation between caregiving time and parental depression was, how-
ever, not significant.

Results Multivariate logistic regression analysis of parents’ depression

Differences in time burden according to individual
characteristics
Table 2 presents differences in parents’ caregiving time, time pres-
sure, and depression according to the characteristics of the cared-
for individual.
Table 5 presents the results of multivariate logistic analysis of the
association between parents’ depression and caregiving time and
time pressure (OR ¼ 1.225; 95% CI, 1.099–1.366; p < 0.001). The
Hosmer–Lemeshow test indicated that the hypothetical model
was appropriate (p ¼ 0.215).
4 E.-Y. PARK AND S.-J. NAM

Table 3. Caregiving burden and individual characteristics (parents).

Caregiving timea Time pressure Depression of parent
2 2
Characteristics Mean SD F(g ) or t p Mean SD F(g ) or t p Mean SD F(g2) or t p
Gender
Male 12.18 7.38 –1.853 0.066 8.71 4.38 –2.656 0.009 20.19 7.08 –1.609 0.110
Female 15.51 6.93 11.16 3.43 13.04 6.64
Age
29 12.85 6.31 4.132 0.008 10.80 3.33 1.997 0.117 20.89 6.88 0.702 0.553
30–39 15.26 7.01 (0.079) 11.45 2.96 (0.039) 22.46 6.75 (0.015)
40–49 17.08 6.68 11.02 3.55 23.45 6.99
50 11.85 7.25 9.26 4.81 22.83 5.91
Employment
Employed 15.07 7.58 –0.083 0.934 10.52 3.62 –0.906 0.366 22.02 7.06 –0.989 0.324
Unemployed 15.17 6.73 11.06 3.61 23.15 6.52
a
Hours per day.

Table 4. Correlations between caregiving time, time pressure, and parental
depression.
Variable Caregiving time Time pressure Parental depression
Caregiving time – greater among parents supporting preschoolers than among
Time pressure 0.280 –
Parental depression 0.111 0.468 –
p < .01.
Table 5. Summary of logistic regression analysis for parents depression.
Variable Adjusted OR (95% CI)
Caregiving time 0.988 (0.939–1.040)
Time pressure 1.225 (1.099–1.366)
Discussion
This study conducted secondary analysis of data collected by
research examining supportive services and policies for people
with brain lesions [13], and examined caregiving time, time pres-
sure, and depression among 152 parents caring for individuals
with CP.
The results showed that 58 (38.2%) of the respondents scored

16 on the Center for Epidemiological Studies Depression Scale.
Respondents supporting a preschool child spent more time sup-
porting this individual than did those supporting adults, while
those supporting adults reported less time pressure than did
those supporting individuals of other ages. The effect of caregiv-
ing time on parental depression was not supported, while
increased time pressure was associated with a higher risk of
depression.
Regarding depression, 38.2% of respondents scored
16 on
the CES-D, indicating significant depressive symptoms and exceed-
ing the rate reported in [21]. Among parents of children with
hemiplegia, clinical anxiety and moderate depression are approxi-
mately four and five times more common that among parents of
children without disability, respectively [22]. Mothers of an individ-
ual with CP more commonly experience depression and obsession
than mothers of normal children, leading to reduced stress toler-
ance, poorer mental health, and increased mental conflict [23].
Parents of individuals with CP are typically primary caregivers
and more commonly experience strong emotional states (e.g.,
depression, anger) than parents of normal children. This may
reflect the transference of emotional pain experienced by individ-
uals with CP regarding their prognosis, symptoms, or treatment.
Depression was more common among this study’s participants
than among parents supporting individuals with CP in previous
research [21,22], this may reflect the Korean cultural context.
Korean parents of children with a disability often blame them-
selves for bearing a child with a disability, leading to stronger
feelings of guilt and frustration than in other cultural contexts
[24,25].
Regarding individual factors’ effects, caregiving time was
those supporting adults, and time pressure was lower among
those supporting adults than among the averaged remainder of
the sample. This supports research indicating that the physical
and psychological difficulties experienced by parents supporting a
child with a disability vary depending on the child’s life stage [26]
p value
and that families’ care burden partly depends on the age of the
0.647
<0.001 individual with the disability [27,28]. Parents of children with CP
must adapt to the many and varied care demands characteristic
of CP, leading to greater caregiving time requirements. Preschool
children with CP particularly require care at all times of the day,
further increasing parents’ caregiving time. This may explain the
greater caregiving time and poorer mental health reported by
parents caring for preschoolers with CP.
Parents caring for individuals with Levels 1–3 disability
reported greater caregiving time and time pressure than those
caring for individuals with Level 1 or 2 disability, supporting
research indicating that children’s degree of disability affects
mothers’ care burden [29], with parents of individuals with quadri-
plegia experiencing the greatest burden [30]. Individuals with CP
commonly depend on their parents for daily activities (e.g., eating,
dressing, going to the bathroom), accordingly, parents of children
with more extensive disability tend to experience a greater care
burden. Means of decreasing such parents’ care burden include
long-term governmental countermeasures, early diagnosis and
treatment for children at risk of CP, early treatment of CP-related
disabilities, and provision of appropriate arbitration programs.
Regarding the logistic regression analysis, caregiving time was
not found to affect depression, whereas increasing time pressure
raised the risk of exceeding the depression cutoff score. This sup-
ports Sawyer et al., who found that time pressure affects depres-
sion among parents caring for children with CP [15], and
Roxburgh [31], who found that time pressure generally predicts
depression. These findings suggest that time pressure, rather than
caregiving time, increases the risk of depression among parents
caring for individuals with CP. Interventions should therefore aim
to assist parents experiencing high time pressure, rather than
parents experiencing high caregiving time. Parents who experi-
ence poor mental health are more likely to lose confidence in
their ability to manage their care responsibilities, particularly
regarding parents of children with disabilities. Interventions
should therefore aim to prevent or alleviate depression among
parents caring for children with disabilities.
Children with CP have particularly numerous and demanding
care requirements. The care burden associated with these care

requirements makes depressive symptoms particularly common
among parents of children with CP. This may adversely affect
these parents’ ability to manage their child’s development and
rehabilitation. Among children with a disability, proper manage-
ment of their disability critically affects their quality of life, and
their parents’ care critically affects the management of their dis-
ability. In this context, improving and protecting the mental
health of parents of children with CP will critically facilitate those
children’s treatment and rehabilitation.
These results are of considerable relevance to professionals
working with individuals with CP as well as to health policy. First,
this study found that parental caregivers are using about 14–15 h
per day to support individuals with CP. This result shows that
parents spend most of their time supporting individuals with CP,
which suggests that they are the sole person involved in support-
ing individuals with CP – that is, they did not distribute the bur-
den of support appropriately among all family members. To
reduce practical difficulties experienced by children’s supporters, it
is important to form a support system made up of family, rela-
tives, and neighbors who can offer both emotional and practical
support.
Second, this study showed that supporters who care for pre-
schoolers spend a considerable amount of time caregiving and
feel high time pressure simultaneously. Accordingly, the child’s life
stage must be considered when developing a strategy to reduce
parental caregivers’ burden. Interventions should be prepared to
effectively alleviate the caregiving time and time pressure of par-
ental caregivers with preschool-aged children.
Third, interventions should direct greater assistance at parents
with high time pressure compared to parents who spend a con-
siderable amount of time engaged in caregiving. Parents with
poor mental health are more likely to lose confidence in their abil-
ity to manage their care responsibilities, particularly the parents of
children with disabilities. Interventions should therefore aim to
prevent or alleviate depression among parents caring for children
with disabilities.
The limitations of this study are as follows. First, it is necessary
to consider factors other than caregiving that can trigger care-
givers’ depression. It might be particularly necessary to help care-
givers who suffer from depression even before they begin
supporting individuals with CP. Second, this study examined only
the main caregivers’ burden for caregiving. Further studies need
to consider the role of social services and sub-caregivers, and their
impact on caregivers’ burden. Third, this study examined the bur-
den of caregiving in individuals with CP only. Future studies
should look at differences in caregiving burden according to type
of disabilities, which could yield more practical alternatives for
reducing caregiving burden.
Disclosure statement
The authors report no conflicts of interest.
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