Received: 14 November 2018 Revised: 4 November 2019 Accepted: 18 November 2019

DOI: 10.1111/ijn.12811

ORIGINAL RESEARCH PAPER

Factors associated with quality of life among mothers of

children with cerebral palsy

Ata Farajzadeh MsC, Occupational Therapist1 |

Saman Maroufizadeh PhD, Assistant Professor2 | Malek Amini PhD, Assistant Professor1

1
Rehabilitation Research Center, Department
of Occupational Therapy, School of
Rehabilitation Sciences, Iran University of
Medical Sciences, Tehran, Iran
2 of patients with cerebral palsy.
School of Nursing and Midwifery, Guilan
University of Medical Sciences, Rasht, Iran
Correspondence
Malek Amini, Department of Occupational
Therapy, School of Rehabilitation Sciences,
Iran University of Medical Sciences, Tehran,
Iran.
Email: malekamini8@gmail.com
Funding information
Iran University of medical sciences, Grant/
Award Number: 96-03-32-31869
Abstract
Aim: To identify the factors pertaining to the quality of life (QOL) among the mothers
Methods: In this cross-sectional study, 203 mothers of children with cerebral palsy
were selected using convenience sampling. The World Health Organization's Quality
of Life Questionnaire (WHOQOL-BREF), the Beck Depression Inventory, the Care-
giver Difficulties Scale, Fatigue Severity Scale, and a demographic information ques-
tionnaire were administered to these caregivers. Hierarchical multiple linear
regression analysis was used to detect the factors associated with QOL.
Results: Moderate to high significant negative correlations were observed between all
WHOQOL-BREF domains and the other measures. The demographic/clinical variables
were controlled, and hierarchical multiple linear regression analysis was run. The results
indicated that depression, the burden of care, fatigue, and the type of cerebral palsy could
significantly predict QOL in these mothers. Furthermore, QOL was lower in the mothers of
children with tetraplegia than those of children with other types of disabilities (P < .05).
Conclusion: QOL of mothers of children with cerebral palsy is negatively impacted
by various factors such as burden of care, fatigue, and psychological symptoms. Thus,
a holistic approach, including training (carrying, positioning, feeding, and how to man-
age the self-care of children) and psychological interventions, is required to improve
QOL among this population.

KEYWORDS

burden of care, caregiver, cerebral palsy, depression, fatigue, nursing, quality of life

S U M M A R Y ST A T E M E N T • This paper showed that the burden of care of mothers caused psy-
chological symptoms such as depression, stress, and decrease
What is already known about this topic? in QOL.

• Unlike developed countries, there are a few studies conducted on
caregivers of patients with cerebral palsy in developing counties.
• The lack of any supporting systems in developing countries caused
most of the burden of care to be on the shoulders of caregivers.
What this paper adds?
The implications of this paper:
• Considering the chronicity of cerebral palsy and that caregivers
may provide care long-term, interventions are needed in order to
decrease the burden of care and psychological symptoms and
enhance QOL.

Int J Nurs Pract. 2020;e12811. wileyonlinelibrary.com/journal/ijn © 2020 John Wiley & Sons Australia, Ltd 1 of 9
https://doi.org/10.1111/ijn.12811
2 of 9
• The significant relationship between severity of cerebral palsy and
burden of care indicates special training packages could be
targeted to decrease the burden of care, physically, emotionally,
and financially.
1 | I N T RO DU CT I O N
Most children enjoy their healthy childhood, but some require special-
ized health care services (Raina et al., 2005). About 7.7% of children
encounter difficulties in their developing years, so, they need to have
access to and utilize substantial health care resources (Raina et al.,
2005). Previous studies have reported an increase in pediatric neuro-
development disorders, such as cerebral palsy (CP) (Houtrow, Larson,
Olson, Newacheck, & Halfon, 2014). CP, as the most common motor
disability beginning in early childhood, is defined as a set of functional
limitations due to damage to the central nervous system (Ones, Yilmaz,
Cetinkaya, & Caglar, 2005). It is a nonprogressive injury to the devel-
oping brain with a pre-, peri-, or postnatal etiology (Carona, Silva,
Crespo, & Canavarro, 2014; Ones et al., 2005). Although motor dys-
function is considered as a hallmark of CP, it is frequently accompanied
by sensory, cognitive, and verbal impairments as well as learning set-
backs and behavioral problems (Khayatzadeh, Rostami, Amirsalari, &
Karimloo, 2013). Other problems, such as tonic and postural difficul-
ties, mental and intellectual impairments, and limitations in self-care
performance including feeding, dressing, bathing, toileting, mobility,
and social participation, have detrimental effects on various aspects of
life of these children and their parents such as physical, psychological,
socio-economic, and behavioural, which leads to decrease in quality of
life (QOL) and family functioning (Garip et al., 2017; Khayatzadeh
et al., 2013; Pashmdarfard, Amini, & MEHRABAN, 2017; Toledano-
Toledano & Domínguez-Guedea, 2019). Due to these limitations, these
children may need long-term care and therapeutic interventions in
order to be able to be more independent (Pashmdarfard et al., 2017).
Typically, those who are responsible for taking care of and supporting
children with disabilities are their family member especially parents.
The family caregiver is the family member who primarily involved
in the care of the patient and provides support and/or assistance dur-
ing the chronic and acute stages of illness or disability of a child, adult,
or elderly person to facilitate recovery, promote independence, and
improve QOL of these people (Toledano-Toledano & Contreras-
Valdez, 2018). In fact, the mother of a child with disabilities is most
often considered to be his/her main caregiver (Ones et al., 2005).
Caregiving is an innate role of mothers, but when it comes to having
children with functional limitations, which may lead to their probable
long-term dependence, the mother takes an especially important role
(Ones et al., 2005). One of the main challenges of these parents is that
they have to both manage their child's health problems and provide
their daily living requirements simultaneously; in other words, mothers
have to shoulder the energy-consuming and multifaceted responsibili-
ties of long-term disability management (Ones et al., 2005;
C. Wijesinghe, Fonseka, & Hewage, 2013).
FARAJZADEH ET AL.
Taking care of a child with long-term functional limitations is a
challenging task due to the emotional and physical demands of care-
giving, which imposes a burden of care (C. Wijesinghe et al., 2013). In
addition to imposing responsibilities, the caregiver burden of children
with disabilities makes emotional, physical, and financial demands on
them and impacts all aspects of their health, such as physical or psy-
chological health (C. Wijesinghe et al., 2013; C. J. Wijesinghe, Cun-
ningham, Fonseka, Hewage, & Østbye, 2015). In spite of the
demanding nature of taking care of children with CP, caregivers may
adapt to these medical, nursing, and rehabilitation difficulties in a posi-
tive way by using resilience. In other word, resilience can help care-
givers to overcome the detrimental effects of caregiving burden in a
positive adaptation (Toledano-Toledano, de la Rubia, Broche-Pérez,
Domínguez-Guedea, & Granados-García, 2019).
The well-being of these caregiver mothers is intricately tied to
that of their disabled child, and as a consequence of care provided by
them and the burden of care borne by them, a large number of these
mothers are reported to suffer from depression and high levels of
stress; therefore, they experience a wide range of changes in their
lifestyle and QOL (Garip et al., 2017; Sajedi, Alizad, Malekkhosravi,
Karimlou, & Vameghi, 2010). The burden of caregiving can adversely
affect the physical, psychosocial, and mental health of caregivers,
leading to poor quality of care and unmet patient needs (Carona et al.,
2014). Filiberto et al revealed that there are types of psychosocial fac-
tors, which impact the burden on caregivers of children with chronic
disease and their QOL. They divided the psychosocial features into
negative factors including stressors and anxiety, and positive factors
compromising social support networks, family support, family func-
tioning, and well-being (Toledano-Toledano & Domínguez-
Guedea, 2019).
QOL has a vital importance, containing several factors such as
physical, emotional, social, and financial aspects (Nogueira, Rabeh,
Caliri, Dantas, & Haas, 2012). QOL is defined as a perception of indi-
viduals concerning their position in life, their cultural and value sys-
tems attributed to objectives, expectations, standards, and concerns
(Garip et al., 2017; Nogueira et al., 2012). However, the QOL of care-
givers is composed of more aspects, such as the burden of care and
family function (Lim & Zebrack, 2004). While caregivers try to improve
patients' QOL via helping them to do their daily living activities inde-
pendently, their own QOL may change; so, in order to prevent burn-
out in caregivers, it is crucial to identify risk factors affecting
caregivers' QOL (Khayatzadeh et al., 2013). The result of an Iranian
population-based study revealed that the lower QOL in mothers of
children with CP was mediated by the socio-economic status, marital
satisfaction, fatigue, and inadequate support from services
(Khayatzadeh et al., 2013). The QOL of Norwegian parents of children
with CP was related to marital satisfaction, and amount of care the
child required (Sjöbu, 1994). Canadian caregivers of children with CP
were reported to encounter more emotional, cognitive, and physical
problems than the general population (Brehaut et al., 2004). The stress
of coping with the burden of chronic disease was a main risk factor
for the development of psychological problems, which leads to the
lower QOL in Turkish mothers of children with CP (Garip et al., 2017).
FARAJZADEH ET AL.
In recent years, tremendous changes in health care systems have
given rise to a shift to outpatient communities and home-based set-
tings, which in turn have imposed greater responsibilities on care-
givers (C. J. Wijesinghe et al., 2015). Given the significant role of
caregivers, it is important to gain a comprehensive understanding of
factors affecting the QOL of caregivers, which is deemed as one of
the most important issues in health care systems with respect to
patients and their caregivers. The QOL of caregivers of children with
CP is a matter of concern to health professionals (Ahmadizadeh,
Rassafiani, Khalili, & Mirmohammadkhani, 2015; Carona et al., 2014).
Mothers, as most often the primary caregivers of children with CP,
play an undeniable role over the course of treatment, and without
their support, it is almost impossible to have the optimum benefit of
treatment (Ones et al., 2005). Identifying and taking control of the
influential factors in this regard can lead to the improvement of the
QOL of both caregivers and children with CP. Mothers' psychosocial
well-being, as a prerequisite for successful community-based rehabili-
tation, is closely associated with the quality of care they provide to
care recipients (Carona et al., 2014; Sajedi et al., 2010). Therefore,
identifying factors impacting the lives of the mothers of children with
disabilities would aid in detecting appropriate supportive interven-
tions for this vulnerable population. Despite the volume of studies on
the QOL of children with CP, there is a dearth of research on the
QOL of their mothers. Since most of the studies are from western
countries and also noting the high prevalence of CP in developing
countries, relatively little research on caregiver burden has been con-
ducted in these settings. In addition, the studies undertaken on the
mothers of these children have mainly addressed the characteristics
of the children or their parents as the main risk factors of the declined
QOL (Carona et al., 2014; Tseng et al., 2016) or have surveyed vari-
ables, such as depression and fatigue, in isolation (Khayatzadeh et al.,
2013). To fill this gap in the literature, this study aimed initially to
investigate three basic determinants, namely, the burden of care,
fatigue, and depression, simultaneously and their association with
QOL and then to survey their predictive power with regard to QOL.
2 | METHODS
2.1 | Aims
This study aimed to identify the main risk factors affecting caregivers'
QOL by examining three fundamental variables (the burden of care,
fatigue, and depression) simultaneously.
2.2 | Study design
This study was performed using cross-sectional design.
2.3 | Participants
The participants in the present study were a convenience sample of
203 mothers of community-dwelling children with CP. The sample size
3 of 9
was determined based on the rule of thumb “20 subjects per predictor”
suggested by statisticians (Tabachnick & Fidell, 2013). In this study, we
had 10 predictors (ie, independent variables); therefore, at least
200 subjects were studied. The mothers were selected from seven
rehabilitation clinics in Tehran, Iran, from January to July, 2018. The
caregivers were included in the study if they had a child with spastic
CP within an age range of 4 to 14 years, was the main caregiver taking
on the most responsibilities for the daily provision of care to the child
with CP, lived with the child with CP in the same place, was a native
Persian speaker and could read and write in Persian, and had an educa-
tion level of grade five or higher. The caregivers with chronic condi-
tions, such as diabetes, heart diseases, or neurologic disorders,
pregnant women, and those who had additional caregiving responsibili-
ties apart from their routine maternal care (for instance, taking care of
another disabled person) were excluded from this study.
2.4 | Data collection
As the patients were visited by the occupational therapists, the care-
givers who met the inclusion criteria were invited to participate in the
study. Participants who agreed to take part in this study were asked
to fill out the questionnaires in the presence of the principal investiga-
tor. Data collection was performed after obtaining approval from Iran
University of Medical Sciences. Data were collected by the first
author.
2.5 | Ethical approval
This study was approved by the Ethics Committee of Iran University
of Medical Sciences, Tehran, Iran (registration number: 96-03-32-
31869). The purpose of the study and confidentiality of the data were
explained verbally to the mothers by the researcher prior to their par-
ticipation. Moreover, written informed consent was obtained from all
mothers before completing the instruments.
2.6 | Measurements
2.6.1 | Demographic characteristics
Before the participants complete the main questionnaires, some
demographic information about their age, education level, employ-
ment status, marital status, and the type of CP were gathered.
2.6.2 | World Health Organization's Quality of Life
Questionnaire
The World Health Organization's Quality of Life Questionnaire
(WHOQOL-BREF) is a well-known instrument for evaluating QOL in
more than 40 languages. This generic QOL instrument was developed
in 1998 and has 26 items and four domains: physical health (seven
items), psychological health (six items), social relationships (three
items), and environmental health (eight items) and two overall QOL
4 of 9 FARAJZADEH ET AL.

and general health items. The scores are transformed to reflect 4 to
20 for each domain such that higher scores correspond to a better
QOL. No overall score is reported for this scale (Nedjat, Montazeri,
Holakouie, Mohammad, & Majdzadeh, 2008). The Persian version of
WHOQOL-BREF has demonstrated sound psychometric properties in
an Iranian population (Nedjat et al., 2008). In this study, the Cronbach
alpha coefficient of the WHOQOL-BREF subscales were ranging
from.621 to.734.
2.6.3 | Caregiver Difficulties Scale
The Caregiver Difficulties Scale (CDS) is a self-administered, multi-
dimensional instrument developed using a combined qualitative-quan-
titative approach. It includes 25 items and is divided into four
domains: concern for the child (eight items), impact on self (seven
items), support for caregiving (five items), and social and economic
strain (five items). Each item was scored on a 5-point (0-4) Likert scale
indicating the frequency/extent of each caregiving experience as per-
ceived by the caregivers. The final total score ranges from 0 to 100. A
greater score indicates higher impact of the burden of care on the
lives of the caregivers (C. Wijesinghe et al., 2013; C. J. Wijesinghe
et al., 2015). The Persian version of CDS has demonstrated sound
psychometric properties in mothers of children with CP (Farajzadeh,
Amini, Maroufizadeh, & Wijesinghe, 2018). In the present study, the
Cronbach alpha coefficient of the CDS and its subscales were ranging
from.731 to.854.
2.7 | Data analysis
Statistical analysis was run in SPSS, version 16.0 (SPSS Inc, Chicago,
IL, USA). The Pearson correlation coefficient was used to examine the
correlations between the variables under investigation. Moreover, the
Pearson correlation coefficient, independent t tests, and one-way
ANOVAs were used to determine the relationships between
WHOQOL-BREF and the demographic characteristics. Then, hierar-
chical multiple linear regression analyses were conducted to examine
the relationships of WHOQOL-BREF with the measures of BDI-II,
CDS, and FSS while the demographic characteristics of the mothers
were controlled. This approach had two steps: in the first step, the
demographic variables were entered in block 1, and in the second
step, the BDI-II, CDS, and FSS scores were entered in block 2. Good-
ness of fit of the regression models was examined using coefficients
of determination (R2), and adjusted R2. R2 is the proportion of varia-
tion in the dependent variable explained by the regression model. In
addition, ΔR2 which is the change in R2 between two models was
reported. The models were also checked for multicollinearity through
the variance inflation factor (VIF) and tolerance. As a rule of thumb, a
tolerance less than 0.1 and/or VIF more than five reflect(s) a problem
with multicollinearity. In this study, none of the variables showed sig-
nificant multicollinearity. All statistical tests were two-sided, and a P <
.05 was considered statistically significant.
3 | RE SU LT S

2.6.4 | Beck Depression Inventory-II 3.1 | The caregivers' characteristics

The Beck Depression Inventory-II (BDI-II) is a 21-item self-report The demographic characteristics of the mothers of the patients with
questionnaire used to assess the severity of depression in adults and CP are presented in Table 1. The mean age of the mothers was 34.48
adolescents over 13 years old. The questionnaire has four possible ± 6.74 years (with the age range of 20-52 years) (Table 1).
answers, graded from 0 to 3, and a higher value reflects a higher level
of depression (Dozois, Dobson, & Ahnberg, 1998). The Persian version
T A B L E 1 The demographic characteristics of the mothers of the
of BDI-II has demonstrated sound psychometric properties in patients patients with CP (n = 203)
with major depressive disorder (Dabson & Mohammadkhani, 2007). In
n (%)
the present study, the Cronbach alpha coefficient of the BDI-II
Age (y) (Mean ± SD) 34.48 ± 6.74
was.893.
Marital status
Single 40 (19.7)

2.6.5 | Fatigue Severity Scale Married 163 (80.3)

Education level
The Fatigue Severity Scale (FSS) consists of nine questions assessing Primary/Secondary 142 (70.0)
disabling fatigue. The subjects had to choose a number from 1 to University 61 (30.0)
7 that best described their degree of agreement with each statement, Employment
where 1 indicates “strongly disagree” and 7 indicates “strongly agree.” Unemployed 134 (66.0)
The numbers chosen for the nine items are combined into a total
Employed 69 (34.0)
score; a lower total score reflects less effect of fatigue. A score equal
Type of CP
to or more than 5 was considered as a high fatigue cut-off point The
Hemiplegic 64 (31.5)
Persian version of FSS has demonstrated sound psychometric proper-
Diplegic 76 (37.4)
ties in patients with multiple sclerosis (Azimian, Shahvarughi Farahani,
Quadriplegic 63 (31.0)
Dadkhah, Fallahpour, & Karimlu, 2009). In the present study, the
Cronbach alpha coefficient of the FSS was.923. Abbreviations: CP, cerebral palsy; SD, Standard Deviation.
FARAJZADEH ET AL. 5 of 9

TABLE 2 The means and standard deviations of the variables under study and their correlations (n = 203)

Mean SD 1 2 3 4 5 6 7 8 9 10 11
1. BDI-II 20.27 11.75 1
2. FSS 39.11 13.02 0.326 1
3. Concerns for the child—CDS 22.77 5.43 0.493 0.306 1
4. Impact on self—CDS 13.94 5.18 0.528 0.402 0.547 1
5. Support for caregiving—CDS 10.45 2.93 0.405 0.218 0.327 0.431 1
6. Social and economic strain—CDS 11.91 3.92 0.584 0.293 0.517 0.563 0.557 1
7. Total CDS 59.09 13.88 0.641 0.400 0.811 0.839 0.657 0.813 1
8. Physical health—WHOQOL-BREF 52.51 13.64 −0.564 −0.462 −0.406 −0.571 −0.332 −0.533 −0.594 1
9. Psychological—WHOQOL-BREF 48.46 15.53 −0.679 −0.283 −0.524 −0.548 −0.418 −0.628 −0.675 0.722 1
10. Social relationships—WHOQOL-BREF 48.00 17.65 −0.620 −0.270 −0.492 −0.540 −0.512 −0.645 −0.683 0.587 0.690 1
11. Environment—WHOQOL-BREF 46.19 14.41 −0.638 −0.324 −0.443 −0.536 −0.415 −0.579 −0.625 0.659 0.712 0.692 1

Note. All P < .001

Abbreviations: BDI-II, Beck Depression Inventory-II; CDS, Caregiver Difficulties Scale; FSS, Fatigue Severity Scale; SD, Standard Deviation; WHOQOL-
BREF, World Health Organization's Quality of Life Questionnaire.

3.2 | The descriptive statistics of the variables and 3.3 | The relationship of QOL with demographic
their correlations characteristics

The WHOQOL-BREF subscales were negatively correlated with the
BDII-II, FSS, and CDS subscales (Ps < .001). Also, all of the correlations
between the WHOQOL-BREF subscales as well as those between the
CDS subscales were positive, moderate to strong in magnitude, and
statistically significant (Ps < .001) (Table 2).
As the results of the Pearson correlation coefficients indicated, age
significantly negatively correlated with all of the WHOQOL-BREF
domains, except for the Environment domain (Table 3).

TABLE 3 The Relationship of the QOL with the demographic characteristics of the mothers of patients with CP as measured by univariate
analysis

Physical Health Psychological Social Relationships Environment

Mean ± SD or r a
P Mean ± SD or r P Mean ± SD or r P Mean ± SD or r P
Age −0.179 .011 −0.183 .009 −0.204 .003 −0.117 .096
Marital status .226 .641 .014 .910
Single 54.85 ± 12.78 47.30 ± 18.01 54.10 ± 17.88 46.42 ± 12.30
Married 51.93 ± 13.82 48.74 ± 14.91 46.50 ± 17.32 46.13 ± 14.91
Education level .034 <.001 <.001 .002
Primary/Secondary 51.18 ± 13.21 45.80 ± 14.54 44.93 ± 16.70 43.85 ± 12.33
University 55.59 ± 14.22 54.64 ± 16.13 55.15 ± 17.87 51.64 ± 17.28
Employment <.001 .007 .012 .114
Unemployed 50.00 ± 12.83 46.16 ± 13.77 45.64 ± 16.25 44.94 ± 12.89
Employed 57.38 ± 13.93 52.91 ± 17.76 52.58 ± 19.41 48.62 ± 16.81
Type of CP <.001 .002 .002 .013
Hemiplegic 52.17 ± 11.43 51.23 ± 15.52 47.73 ± 17.05 45.39 ± 13.96
Diplegic 57.86 ± 13.83 50.75 ± 17.90 52.92 ± 19.46 49.76 ± 16.86
Quadriplegic 46.40 ± 12.99 42.87 ± 10.38 42.33 ± 14.13 42.70 ± 10.28

Abbreviations: CP, cerebral palsy; SD, standard deviation; QOL, quality of life.
a
Pearson correlation coefficient.
6 of 9 FARAJZADEH ET AL.

3.4 | Multiple linear regression analysis
Several hierarchical multiple linear regression analyses were con-
ducted to determine the variables associated with the WHOQOL-
BREF domains (Table 4).
equalled.158, indicating that 15.8% of the variance in this domain was
explained by the demographic variables. In block 2, the BDI-II and
CDS scores were negatively correlated with the Psychological scores.
When the BDI-II, CDS, and FSS measures were added to the model,
there was a considerable improvement in the model (ΔR2 = 43.9%,
F change = 70.35, P < .001).

3.4.1 | Physical health domain

Regarding the physical health domain, in block 1, having a higher age,
being unemployed, and having a child with quadriplegic CP were sig-
nificantly related to poor physical health scores (Table 4). When the
demographic variables were included in the model, the model R2 was
equal to.166, suggesting that 16.6% of the variance in this domain
was explained by the demographic variables. In block 2, all of the BDI-
II, CDS, and FSS scores were negatively correlated with the physical
health scores. When the BDI-II, CDS, and FSS measures were added
to the model, there was a significant improvement in the model (ΔR2
= 31.9%, F change = 39.97, P < .001).
3.4.3 | Social relationships domain
With respect to the social relationships domain, in block 1, having a
higher age, having a low level of education, being married, and having
a child with quadriplegic CP significantly pertained to the poor social
relationships scores (Table 4). The model R2 in this step was.171,
which is indicative of the fact that 17.1% of the variance in this
domain was explained by the demographic variables. In block 2, the
BDI-II and CDS scores were negatively correlated with the social rela-
tionships scores. When the BDI-II, CDS, and FSS measures were
added to the model, there was a considerable improvement in the
model (ΔR2 = 41.4%, F change = 64.43, P < .001).

3.4.2 | Psychological domain

Considering the psychological domain, in block 1, having a higher age,
having a low level of education, and having a child with quadriplegic
CP significantly led to the poor psychological scores (Table 4). When
2
the demographic variables were included in the model, the model R
3.4.4 | Environment domain
Concerning the environment domain, in block 1, only having a low
level of education was significantly related to the poor environment
scores (Table 4). The model R2 in this step was reported to be.093,

TABLE 4 The results of the hierarchical multiple linear regressions for the factors related to the QOL of the mothers of children with cerebral
palsy

Physical Health Psychological Social Relationships Environment

B (SE) P B (SE) P B (SE) P B (SE) P

Block 1: Demographics
Age −0.32 (0.14) .020 −0.46 (0.16) .003 −0.44 (0.18) .012 −0.26 (0.15) .087
Marital Status (Single = 0a) −2.16 (2.33) .355 2.86 (2.67) .285 −6.56 (3.01) .030 0.29 (2.57) .912
Education level 1.76 (2.05) .390 7.00 (2.34) .003 8.64 (2.64) .001 7.12 (2.26) .002
(Nonacademic = 0a)
Occupation (Unemployed = 0a) 5.28 (2.03) .010 3.83 (2.32) .100 2.55 (2.61) .331 0.84 (2.23) .708
Type of CP −7.44 (1.99) <.001 −5.63 (2.28) .014 −6.82 (2.57) .009 −3.67 (2.20) .096
(hemiplegic/diplegic =0a)
Model characteristics R2 = 16.6%, R2adj = 14.5%, R2 = 15.8%, R2adj = 13.7%, R2 = 17.1%, R2adj = 15.0%, R2 = 9.3%, R2adj = 7.0%,
F = 7.84, P < .001 F = 7.41, P < .001 F = 8.14, P < .001 F = 4.04, P = .002
Block 2: BDI-II, CDS, and FSS
BDI-II −0.31 (0.08) <.001 −0.53 (0.08) <.001 −0.41 (0.09) <.001 −0.43 (0.08) <.001
CDS −0.26 (0.08) <.001 −0.47 (0.08) <.001 −0.67 (0.09) <.001 −0.44 (0.08) <.001
FSS −0.25 (0.06) <.001 0.03 (0.06) .595 0.03 (0.07) .621 −0.07 (0.06) .265
Model characteristics R2 = 48.5%, ΔR2 = 31.9%, R2 = 59.7%, ΔR2 = 43.9%, R2 = 58.5%, ΔR2 = 41.4%, R2 = 53.3%, ΔR2 = 44.0%,
R2adj = 46.3%, R2adj = 58.0%, R2adj = 56.8%, R2adj = 51.4%,
F = 22.80, P < .001 F = 35.91, P < .001 F = 34.16, P < .001 F = 27.68, P < .001

Abbreviations: B, Unstandardized Coefficient; BDI-II, Beck Depression Inventory-II; CDS, Caregiver Difficulties Scale; FSS, Fatigue Severity Scale; SE,
Standard Error.
a
Reference group.
FARAJZADEH ET AL.
suggesting that 9.3% of the variance in this domain was explained by
the demographic variables. In block 2, the BDI-II and CDS scores were
negatively correlated with the Environment scores. When the BDI-II,
CDS, and FSS measures were added to the model, there was a consid-
erable improvement in the model (ΔR2 = 44.0%, F change = 60.93,
P < .001).
4 | DISCUSSION
Trying to bridge some of the gaps in the literature, this study aimed to
find the main risk factors affecting caregivers' QOL by examining
three fundamentally influential variables simultaneously. The potential
determinants were categorized into two groups: the demographic fea-
tures and the QOL dimensions (depression, the burden of care, and
fatigue). We found that the QOL reported for the mothers of children
with CP was lower than that reported for the Iranian general popula-
tion (Ahmadizadeh et al., 2015), which is consistent with the results of
other studies, such as Ebrahimzadeh et al. (2013) and Khayatzadeh
et al. (2013).
In the current study, the level of education was found to be asso-
ciated with all of the domains of QOL; therefore, it can be stated that
higher levels of education help mothers come up with coping strate-
gies to deal with difficulties. Running some training courses, in which
effective caregiving techniques, such as transfer of training, feeding,
and bathing, are provided by the government and professionals can
be useful to decrease the burden of care due to lack of knowledge.
It was also found that there was a significant relationship
between employment and QOL; in fact, the employed mothers
obtained higher QOL scores than the unemployed mothers in all of
the domains, except for the environment domain. So, it seems that
having a job with a fair salary is associated with the psychological or
physical well-being of parents, results in fewer psychological life
stressors and lower financial burden and improves their psychological
and physical health. Regarding the environment domain, due to the
limited availability of environmental facilities in different parts of Iran,
all of the mothers experienced the same condition, ie, a poorly
adapted environment. The results of this research are consistent with
those reported in Ahmadizadeh et al. (2015) in which the irreplaceable
role of employment on QOL was observed. Therefore, it can be stated
that full-time employed mothers are more likely to have a better QOL.
In fact, one of the most influential factors in mothers' QOL is
employment.
As expected, there was a significant negative correlation between
the patients' type of CP and the mothers' QOL. In effect, the degree
of life satisfaction in the mothers declined as their children's neurolog-
ical impairment level increased. This can be explained by the fact that
children with lower levels of independence impose a greater burden
on their mothers, resulting in decreasing the QOL of their mothers.
These findings are in line with those reported in a Sri Lankan study in
which it was demonstrated that a higher level of neurological disability
in children with CP was associated with a greater burden on their
caregivers (C. J. Wijesinghe et al., 2015).
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The lower QOL scores of the caregivers of the patients with
higher levels of injury highlighted the need of these patients for more
assistance in performing their different daily living activities.
Moderate to high significant inverse correlations were observed
in all of the domains of the CDS, BDI, FSS, and WHOQOL scales. The
support for the caregiving domain of the CDS and the social relation-
ship domain of the WHOQOL had the highest significant negative
correlation. These results are concordant with those of the previous
studies in which it was reported that caregiving burden was negatively
correlated with the parents' and their children's QOL (Carona et al.,
2014; Farajzadeh et al., 2018; Tseng et al., 2016).
The radical implication of these findings is that coping with the
burden of care must be perceived as a strategic intervention target by
specialists working in neuropediatric sectors so as to promote parent-
child adaptation in an effective way. The results supported the nega-
tive correlation seen between QOL and depression (Farajzadeh et al.,
2018; Garip et al., 2017; Ones et al., 2005). The score of the psycho-
logical domain of the WHOQOL had the highest significant negative
correlation with the BDI scores. Observing psychological symptoms in
the mothers is probably because of the need to provide lifelong care
to their child; as a result, they confront long-term stressors, resulting
in psychological symptoms and parental distress, all of which in turn
affect their QOL (Ones et al., 2005; Sajedi et al., 2010). Therefore, in
order to enhance rehabilitation processes and achieve better results
for these children, the treatment or prevention of depression in
mothers of children with CP is highly recommended. Other studies,
such as Garip et al. (2017), Khayatzadeh et al. (2013) and Ones et al.
(2005) have confirmed the results of the current study, with Ones
et al. (2005) demonstrating that mothers of children with CP had
depressive symptoms and lower QOL.
In the present study, it was also found that fatigue was associated
with all of the domains of QOL, especially the physical domain. The
negative correlation between fatigue and these domains meant that
as the FS score increased, the QOL of the caregivers dropped. It
seemed that the reported fatigue mostly pertained to the physical
aspect; however, the possibility of it relating to the psychological
should not be ignored. Thus, consistent fatigue may deteriorate their
QOL. Our findings regarding the association of fatigue with QOL are
in accordance with other findings (Garip et al., 2017; Khayatzadeh
et al., 2013).
The following possible determinants can be attributed to
fatigue in the mothers of children with CP: lack of social support
and respite care services, the use of nonsophisticated coping strat-
egies, lack of time and energy to participate in physical activities,
and lack of access to assistive technology. In Iran, caregivers are
more likely to be more vulnerable to the negative ramifications of
caregiving and to show more symptoms of fatigue since no proper
transportation system or professional assistive equipment is avail-
able. In addition, the government does not subsidize some of the
rehabilitation expenses, which may increase stress and put more
financial pressure on these families.
The results of the multiple regression analysis revealed those four
main determinants, including, the burden of care, depression, fatigue,
8 of 9
and the type of CP, significantly predicted QOL. So, it can be declared
that these factors would significantly predict the probable QOL above
and beyond the caregiver's demographic characteristics and the type of
CP. It was also found that an important factor deteriorating QOL in the
mothers of children with CP was to have a child with severe neurological
impairment (quadriplegic CP) since this type of CP exerts an influence
on physical, psychological, and social domains, reducing the participation
of their mothers in social activities, potentially eventually resulting in
their alienation and isolation. The severity of a child's impairment is asso-
ciated with family functioning, such as the quality of marriage, parents'
mental condition, and social support (Khayatzadeh et al., 2013).
On closer examination, as the burden of care increased, the
mothers experienced more physical and psychological fatigue; conse-
quently, their life satisfaction decreased, and they had less control
over their life. All of these resulted in the manifestation of psychologi-
cal symptoms, such as depression, and finally in a decrease in
their QOL.
4.1 | Limitations
This study has several limitations that might threaten the generaliz-
ability of the obtained results; so, any inference has to be drawn with
a sensation because of the cross-sectional nature. First, non-
randomized sampling was utilized; a convenience sample of the
mothers of children with CP was chosen. Second, not all of the factors
affecting QOL could be controlled. There are some other factors,
which were not assessed but which might place a burden on Iranian
mothers and make the process of caregiving difficult and demanding.
These factors include lack of subsidization for pricy rehabilitation ses-
sions by insurance companies, lack of social support from governmen-
tal or non-governmental agencies to decrease the long-term caregiver
burden, and finally lack of access to assistive technology and lack of
financial resources of these families to access these devices. Further
studies are needed to examine or control factors affecting QOL.
Finally, despite that there are some fathers who take care of disabled
children, in this study, we have just included mothers, so it is
suggested that other research will focus on both mothers and parents
and also their spousal support. Strengths of this study are surveying
the critical determinants simultaneously and use a specifically
designed assessment for caregivers.
5 | C O N CL U S I O N
In this study, the significant predictive power of caregivers' burden,
depression, and fatigue was confirmed, implying that interventions
should lay emphasis on the empowerment of family caregivers by pro-
viding proper training, supporting them, and facilitating access to nec-
essary resources in order for them to handle the burden of care
better. Therefore, it can be concluded that by focusing on burden of
care, depression, fatigue and finding practical ways to decrease their
impacts can lead to improvements in QOL of mothers and the care
FARAJZADEH ET AL.
they provide. Expanding caregivers' support network may also have a
positive effect on the enhancement of caregivers' sense of compe-
tence and control. Such interventions would maximize the potential of
children with disabilities, facilitate their integration into the society,
and decrease the burden on these caregivers. Future studies are
needed to find and investigate practical interventions to improve the
QOL of mothers.
AC KNOWLEDG EME NT
Our special thanks to the caregivers of children with CP who con-
sented to participate in this study. This study was supported by Iran
University of Medical Sciences (grant number: 96-03-32-31869).
CONFLIC T OF INT ER E ST
The authors declare that they have no conflict of interest.
AUTHOR CONTRIBU TIONS
AF was responsible for study design and conception, manuscript writ-
ing, and data interpretation; SM was responsible for study design and
conception, manuscript writing, data analysis, and interpretation; and
MA was responsible for manuscript editing, study design, and
conception.
OR CID
Malek Amini https://orcid.org/0000-0001-7643-7821
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How to cite this article: Farajzadeh A, Maroufizadeh S,
Amini M. Factors associated with quality of life among
mothers of children with cerebral palsy. Int J Nurs Pract. 2020;
e12811. https://doi.org/10.1111/ijn.12811