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Research in Developmental Disabilities 49–50 (2016) 312–321

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Research in Developmental Disabilities

Do environmental barriers affect the parent-reported quality


of life of children and adolescents with cerebral palsy?
Marta Badia a,*, M. Begoña Orgaz b, Marı́a Gómez-Vela a, Miguel A. Verdugo a,
Ana M. Ullán c, Egmar Longo d
a
Institute on Community Integration (INICO), Faculty of Psychology, University of Salamanca, Salamanca, Spain
b
Faculty of Psychology, University of Salamanca, Salamanca, Spain
c
Department of Social Psychology, University of Salamanca, Spain
d
Health of Children, UFRN/FACISA, Brazil

A R T I C L E I N F O A B S T R A C T

Article history: Physical, social, and attitudinal environment may affect the quality of life (QoL) of children
Received 20 April 2015 and adolescents with cerebral palsy (CP). Participants in this study included parents of
Received in revised form 12 December 2015 206 children and adolescents with CP (55.8% males) aged 8–18 years (M = 11.96, SD = 3).
Accepted 14 December 2015
Distribution according to the Gross Motor Function Classification System (GMFCS) was
Available online
24.3% level I, 18% level II, 18% level III, 12.6% level IV, and 27.2 level V. Environmental
barriers were assessed with the Spanish version of the European Child Environment
Keywords:
Questionnaire (ECEQ), and QoL was assessed with the KIDSCREEN parents’ version. The
Environmental barriers
Quality of life results of the correlation analysis revealed that GMFCS level, IQ, and type of schooling are
Cerebral palsy significantly correlated with QoL. Barriers were also associated with QoL. A series of
Children hierarchical regression analyses indicated that, after controlling for the effect of child and
Adolescents parent’s variables, barriers at home and at school significantly contribute to QoL. These
findings underscore the importance of providing interventions to produce environmental
changes that contribute to the improvement of QoL.
ß 2015 Elsevier Ltd. All rights reserved.

What this paper adds

 Environment has currently become a focus of interest because, as it is considered a potentially modifiable factor, its
negative (barriers) and positive (facilitators) aspects that may influence QoL can be identified. This study provides relevant
information about how the barriers perceived by parents influence QoL. The results showed that barriers, understood as
factors of the physical, social, and attitudinal environment that limit the functioning of children with CP, are related to
lower parent-reported QoL. The availability of a wide range of physical environmental facilitators (home, school, and
public spaces), the adequacy of the services according to the children’s needs, and, especially, the positive attitudes of the
family and the school are aspects that determine the QoL of children and adolescents with CP.

* Corresponding author at: Institute on Community Integration (INICO), Faculty of Psychology, University of Salamanca, Avda. de la Merced, 109-131,
37005 Salamanca, Spain.
E-mail addresses: badia@usal.es (M. Badia), orgaz@usal.es (M. Begoña Orgaz), mgv@usal.es (M. Gómez-Vela), verdugo@usal.es (M.A. Verdugo),
ullan@usal.es (A.M. Ullán), egmarlongo@yahoo.es (E. Longo).

http://dx.doi.org/10.1016/j.ridd.2015.12.011
0891-4222/ß 2015 Elsevier Ltd. All rights reserved.
M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321 313

1. Introduction

The International Classification of Functioning, Disability and Health (ICF) (World Health Organization [WHO], 2001)
defines disability as the result of a interaction between personal health conditions and contextual factors. The ICF
introduces environmental factors that make up the physical, social, and attitudinal environment in which people live. As
the environment is a potentially modifiable variable, it has become prominent in research on disability (Fougeyrollas
et al., 1998; Jönsson, Ekholm, & Schult, 2008; Whiteneck et al., 2004). In addition, the achievement of environmental
changes favoring people with disabilities is one of the guidelines established by the United Nations Convention on the
Rights of Persons with Disabilities (United Nations, 2006), which, in article 31, specifies states’ obligation to identify and
eliminate the barriers faced by people with disabilities in the exercise of their rights.
QoL has become a key outcome of intervention procedures in children with CP (Colver, 2006; Dickinson et al., 2007;
Rosenbaum, 2008). The WHO defines QoL as ‘‘individuals’ perception of their position in life in the context of the
culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’’ (The
WHOQOL Group, 1995: 1045). QoL is a multidimensional construct that includes subjective and objective components
(Bjornson & McLaughlin, 2001; Waters, Maher, Salmon, Reddihough, & Boyd, 2005) and that is influenced by
environmental factors (Schalock et al., 2002; Verdugo, Schalock, Keith, & Stancliffe, 2005). Although self-report
questionnaires are regarded as the primary method of assessing QoL, it is proposed that, because of children’s cognitive
immaturity, limited social experience, and continued dependency, parents may be more able to report some aspects
of their child’s QoL (Arnaud et al., 2008; Davis et al., 2007; Waters et al., 2007). Currently implementation of this
construct serves as a guide for professional practice in order to improve the QoL of children with CP (Colver, 2006;
Majnemer & Mazer, 2004).
In recent years, there has been increasing interest in the study of the QoL of children with CP (Arnaud et al., 2008; Davis
et al., 2007; Dickinson et al., 2007; Majnemer, Shevell, Rosenbaum, Law, & Poulin, 2007; White-Koning et al., 2007). Some
research indicates that the QoL reported by parents of children with CP is low (Beckung et al., 2008; Law et al., 2014; Liptak
et al., 2001; Longo-Araújo-de-Melo et al., 2012; Majnemer et al., 2007; Vargus-Adams, 2009; Wake, Salmon, & Reddihough,
2003). However, the study carried out by the SPARCLE group, in which six European countries participated, has shown that
self-reports of QOL in children with CP are similar to those of children from the general population, and children with CP even
obtained better results in the school setting domain (Dickinson et al., 2007). Therefore, children and parents perceive QoL
differently, confirming that parents tend to underestimate their children’s QoL in most domains (Davis et al., 2007; White-
Koning et al., 2007).
Studies have shown that participation in leisure activities may be crucial for a perceived good QoL for this
population (Badia, Longo, Orgaz, & Gómez-Vela, 2013; Dahan-Oliel, Mazer, & Majnemer, 2012[15_TD$IF]; McManus, Corcoran, &
Perry, 2008; Shikako-Thomas et al., 2012). Badia et al. (2013) found that diversity, intensity, and enjoyment of
participation explained levels of QOL in physical well-being, psychological well-being, autonomy, parent relations and
home life, and social support and peer domains. However[1_TD$IF], Dahan-Oliel[2_TD$IF] et al. (2012) pointed out some negative impacts of
involvement in leisure activities on QoL, mostly mediated by environmental constraints related to accessibility or lack of
adaptations.
Several studies have shown that some environmental factors such as lack of physical and emotional support,
inaccessibility of the physical environment, and negative attitudes affect participation of children with CP (Colver et al.,
2012; Forsyth, Colver, Alvanides, Woolley, & Lowe, 2007; Mihaylov, Jarvis, Colver, & Beresford, 2004; Vargus-Adams
& Martin, 2011; Vogts, Mackey, Ameratunga, & Stott, 2010). Colver et al. (2012) also found that the physical, social,
and attitudinal environment influences participation of children with CP, understood as their involvement in diverse
life areas.
Other studies have focused on analyzing the factors that determine QoL, participation, and the environment
(Forsyth et al., 2007; Law, Petrenchik, King, & Hurley, 2007; Mihaylov et al., 2004; Shikako-Thomas et al., 2013;
Verschuren, Wiart, Hermans, & Ketelaar, 2012). It has also been shown that children with CP with a major motor
impairment, presence of pain, and intellectual disabilities obtain lower QoL (Arnaud et al., 2008; Badia, 16_TD$IF]R [ iquelme,
[17_TD$IF]Orgaz, [18_TD$IF]Acevedo, [19_TD$IF]Longo, [20_TD$IF]& [21_TD$IF]Montoya, [2_TD$IF]2014; Dickinson et al., 2007; Riquelme, Cifre, & Montoya, 2011; Swiggum,
Hamilton, Gleeson, & Roddey, 2010) and that these factors interfere with their participation in daily activities and the
fulfillment of social roles (McKearnan, Kieckhefer, Engel, Jensen, & Labyak, 2004; Penner, Xie, Binepal, Switzer,
& Fehlings, 2013). Finally, it has been found that high participation is associated with the availability of a better
environment (Colver et al., 2012) and that a supportive, accessible environment is also a predictor of better QoL
(Law et al., 2014).
Although the ICF includes environmental factors as a component of the biopsychosocial model of disability, little is
known about how environmental factors influence the QoL of children and adolescents with CP. The goal of this study is
to test the hypothesis that establishes that the QoL of Spanish children and adolescents with CP is influenced by
environmental factors. More specifically, the following hypotheses are proposed in this study: (1) the QoL of children
and adolescents with CP informed by their parents is related to the child’s factors, (2) low QoL is associated with
the perception by parents of physical, social, and attitudinal barriers, and (3) barriers explain QoL after controlling for
the child and parents’ factors.
314 M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321

2. Methods

2.1. Participants

A convenience sample of parents of children and adolescents with CP was obtained from various services that depend on
the Spanish Confederation of Organizations and Associations for the Care for people with Cerebral Palsy and Related
Disabilities (ASPACE), the most representative organization in all regions of Spain.
Participants in this study included a total of 206 parents of children and adolescents with CP. Of the children and
adolescents, 55.8% were male and 44.2% were female, with an age range between 8 and 18 years (M = 11. 96, SD = 3). The
distribution according to the Gross Motor Function Classification System (GMFCS) was 24.3% level I, 18% level 2, 18% level III,
12.6% level IV, and 27.2% level V. Table 1 shows the sociodemographic characteristics of the children and parents.

2.2. Measures

2.2.1. Gross motor function classification system (GMFCS)


The GMFCS is an age-specific scheme designed for children with CP based on five levels of gross motor function.
Functional levels range from I (independent gross motor function with few limitations) to V (complete dependence for all
motor activities). The psychometric properties of the GMFCS have been thoroughly tested and reported, and include
evidence supporting its content validity, construct validity, inter-rater reliability and test–retest reliability (Palisano et al.,
[23_TD$IF]1997; Wood & Rosenbaum, 2000).

2.2.2. Spanish version of European Child Environment Questionnaire (ECEQ)


The ECEQ ask parents to assess the relevance of the physical, social, and attitudinal environment of children with
disabilities (Badia, Orgaz, [24_TD$IF]Gómez-Vela, [20_TD$IF]& [25_TD$IF]Longo, [2_TD$IF]2014; Dickinson & Colver, 2011). The Spanish version of instrument
consists of 53 items divided into the following domains: Products and technology, which include the categories at home

Table 1
Children and parents’ sociodemographic characteristics.

Variable n (%)

Children
Gender
Male 115 (55.8)
Female 91 (44.2)
Age (M = 11.96, SD = 3.00, range = 8–18 years)
GMFCS
Level I 50 (24.3)
Level II 37 (18.0)
Level III 37 (18.0)
Level IV 26 (12.6)
Level V 56 (27.2)
Intellectual disability
None 33 (16.1)
Mild 43 (21.0)
Moderate 39 (19.0)
Severe 90 (43.9)
Type of schooling
Mainstream 113 (55.4)
Special school 91 (44.6)

Parents
Gender
Male 66 (32.5)
Female 137 (67.5)
Age (M = 43.16, SD = 5.78, range = 28–61 years)
Educational level
Elementary school 58 (28.9)
High School 71 (35.3)
University or Ph.D. 72 (35.8)
Family structure
Single 32 (15.8)
Married or living with partner 170 (84.2)
Total family income (Euros s per month)
Less 1000 s 32 (16.0)
Between 1000–2000 s 84 (42.0)
More than 2000 s 84 (42.0)
M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321 315

(6 items), at school (4 items) and in the community (13 items); Services, systems and policies (12 items); Support and
relations (9 items); and Attitudes (9 items). In the last domain, items were classified into attitudes at home (4 items) and at
school (5 items). The parent was first asked whether or not the specific environmental feature (EF) was needed. If it was
needed, the parent was then asked whether or not it was available. This tool provides information about the availability of a
wide range of physical EFs at home, at school, and in public spaces; the appropriateness and adequacy of the services; and
attitudes experienced by families, friends, and professionals. We considered binary responses for each EF, need was scored as
‘‘not needed’’ = 0 and ‘‘need’’ = 1; availability was scored as: ‘‘not needed’’ or ‘‘needed and available’’ = 0 and ‘‘needed and not
available’’ = 1. The reliability values according to the Cronbach alphas in our study were .86 for Products and technology,
.71 for Services, systems and policies, .67 for Support & relations, and .71 for Attitudes.

2.2.3. KIDSCREEN
QoL was evaluated using the Spanish version of the KIDSCREEN for parents (Aymerich et al., 2005). This questionnaire
provides accurate information about the health profile with 52 items distributed in 10 domains: Physical well-being,
Psychological well-being, Moods & emotions, Self-perception, Autonomy, Parental relations, Financial resources, Social
support & peers, School environment, and Social acceptance. The items have a five-point Likert scale with two sets of possible
responses: never, seldom, quite often, very often, always and not at all, slightly, moderately, very, extremely. Scores were
converted into T-scores (M = 50, SD = 10) with higher values indicating higher QoL. In our sample, the Cronbach alpha values
for the 10 domains ranged between .60 and .90.

2.3. Procedure

This research obtained the favorable report from the Committee of Bioethics of the University of Salamanca and was
carried out according to international ethical principles that govern research with human beings.
The ECEQ and the KIDSCREEN data and questions on functioning (GMFCS level, IQ), as well as additional questions
regarding demographics, were collected through individual interviews, conducted by different interviewers who received
formal training.

2.4. Statistical analyses

Firstly, to determine the relationship between child and parents sociodemographic characteristics, disability-related
characteristics and barriers and the QoL dimensions we conducted zero-order Pearson’s correlations.
Secondly, to determine the incidence of the different categories of barriers on the QoL dimensions, eliminating the effect
of the sociodemographic characteristics and disability-related characteristics, we conducted hierarchical regression
analysis, including in the first step the control variables (sociodemographic and disability-related variables), and in the
second step, the different barriers. Only variables whose correlation with the analyzed domain was significant were
included. To determine whether the contribution of the barriers was significant, we used the coefficient of determination of
change and the corresponding F-test of significance. The contribution of each one of the types of barriers was based on the
corresponding t-test on its regression coefficient.
For data analysis, SPSS v. 21 was used, and a significance level of .05 was established to consider the results significant.

3. Results

3.1. Analysis of relationship between children and parents’ sociodemographic characteristics and disability-related characteristics
and quality of life domains

In the case of the child’s sociodemographic variables, a significant correlation was obtained (small-medium effect
size) between the child’s gender and the domain Financial resources. Boys were at risk of low QoL in terms of
economic disadvantage. Regarding the parent’ characteristics, significant positive and negative relationships were
obtained (small-medium effect size) between the educational level and the Physical well-being, Self-perception,
and Financial resources domains. Children whose parents had a high educational level had increased risk of lower
QoL in Self-perception, but they were higher in the Physical well-being and Financial resources domains
(Table 2).
Significant and positive correlations were also obtained (medium/medium-low effect size) between type of schooling and
the Moods and Emotions, Self-perception, Parent relation and home life, School environment, and Social acceptance
domains. Schooling in mainstream schools was associated with lower QoL in these domains. However, a significant and
negative correlation (medium-low effect size) with the domain Social support and peers was found. Only in this domain,
schooling in ordinary schools was associated with better QoL.
Regarding the characteristics of the disability, significant negative correlations were obtained (large and medium
effect size) between GMFCS levels and the Physical well-being and Social support and peers domains. Children with
severely impaired motor function had lower QoL in these domains. Conversely, a positive relationship (medium effect
size) with Social acceptance was obtained. Children with lower GMFCS levels were associated with low QoL in
316 M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321

Table 2
Correlation matrix children and parents’ sociodemographic characteristics and disability-related characteristics and quality of life domains.

Quality of life domain Children Parents


1 1
Gender Age Type of GMFC IQ Gender Age Family Educational Family
schooling2 structure3 level income

Physical well-being 0.09 0.02 0.17 0.50*** 0.09 0.00 0.08 0.00 0.23* 0.05
Psychological well-being 0.06 0.03 0.05 0.10 0.00 0.11 0.05 0.00 0.01 0.02
Moods & Emotions 0.05 0.06 0.29** 0.17 0.18 0.02 0.09 0.02 0.03 0.00
Self perception 0.18 0.05 0.32** 0.06 0.28** 0.19 0.03 0.11 0.20* 0.10
Autonomy 0.02 0.13 0.07 0.15 0.02 0.03 0.08 0.02 0.03 0.04
Parent relation & home life 0.05 0.09 0.26** 0.02 0.22* 0.14 0.02 0.01 0.10 0.04
Social support & peers 0.01 0.01 0.24* 0.26** 0.27** 0.04 0.01 0.03 0.16 0.00
School environment 0.04 0.09 0.22* 0.05 0.18 0.14 0.13 0.08 0.04 0.06
Social acceptance 0.13 0.01 0.27** 0.26** 0.08 0.13 0.14 0.12 0.16 0.07
Financial resources 0.21* 0.03 0.10 0.05 0.13 0.17 0.06 0.02 0.21* 0.14
1 2 3
Note: Variables were conducted as follows: [Male = 0, Female = 1]; [Mainstream = 0, Special = 1]; [Single = 0, Married = 1].
* p < 0.05.
** p < 0.01.
*** p < 0.001.

this domain. Finally, significant relationships were obtained (medium effect size) between IQ levels and the domains of Self-
perception and Social support and peers. Children with lower IQ were at higher risk of low QoL in the Self-perception domain.
However, children with a higher level of IQ were associated with lower QoL in the Social support and peers domain[26_TD$IF]. [7_TD$IF]Table 3[27_TD$IF]
shows the analysis of relationship between perceived barriers and QOL domains.

3.2. Analysis of the association of barriers with quality of life after controlling for children and parents’ sociodemographic variables
and variables related to the child’s disability

GMFCS levels contributed significantly to the explanation of the Physical well-being and Social acceptance domains.
When the barriers were entered in the second step, their contribution to explain these dimensions was nonsignificant. IQ
level contributed significantly to the explanation of the Self-perception domain. When the barriers were entered in the
second step, their contribution to explain this dimension was nonsignificant.
After controlling for the effect of child and parents’ variables, when the barriers were entered in the second step, they
contributed significantly to the Psychological well-being, Parent relations and home life, Social support and peers, and
Financial resources domains. Barriers explained, respectively, 7, 8, 15, and 8% of the variance of QoL in these domains. The
contribution of Attitudes was significant in the domains of Psychological well-being (p = 0.005), Parent relations and home
life (p < 0.001), and Social Support and peers (p = 0.001). The contribution of Services, systems and policies was significant
(p = 0.01) in the domain Financial resources. Type of schooling contributed significantly to the explanation of the domains of
Moods and emotions and School environment, and barriers. Concretely, Attitudes was significant (p = 0.001), explaining,
respectively, 7 and 11% of the variance of QoL in these domains. The contributions of child and parents’ variables and barriers
were nonsignificant for the explanation of the Autonomy dimension (Table 4).

Table 3
Correlation matrix perceived barriers and quality of life domains.

Quality of life domains Barriers

Products and technology Services, systems Support and Attitudes (home


(home, school and community) and policies relations and school)

Physical well-being 0.39***[12_TD$IF] 0.28** 0.12 0.17


Psychological well-being 0.12 0.17 0.21* 0.33***
Moods & emotions 0.06 0.09 0.11 0.30**
Self-perception 0.03 0.01 0.08 0.05
Autonomy 0.17 0.13 0.20* 0.31***
Parent relation & home life 0.05 0.10 0.18 0.36***
Social support & peers 0.24* 0.27** 0.36*** 0.37***
School environment 0.01 0.02 0.10 0.36***
Social acceptance 0.16 0.04 0.04 0.21*
Financial resources 0.11 0.22* 0.11 0.31**

* p < 0.05.
** p < 0.01.
*** p < 0.001.
M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321 317

Table 4
Hierarchical multiple regressions of quality of [14_TD$IF]life domains on barriers, controlling for children and parents’ sociodemographic variables and child’s
disability-related variables.

Step/variables b (95% CI) p D R2[13_TD$IF]


2 ***
Physical well-being R = 0.33
Step 1: Control variables 0.30***
Children: GMFCS 3.83 ( 4.75 to 2.93) <0.001
Parents: Educational level 0.51 ( 1.16 to 2.18) 0.56
Step 2: Barriers 0.03
Products and technology 0.32 ( 0.83 to 0.18) 0.21
Services, systems and policies 0.43 ( 1.08 to 0.11) 0.18

Psychological well-being R2 = 0.07***


Step 1: Control variables 0.00
Step 2: Barriers 0.07***
Support & relations 0.34 ( 1.59 to 0.91) 0.60
Attitudes 1.29 ( 2.17 to 0.40) 0.005

Moods & emotions R2 = 0.12***


Step 1: Control variables 0.05**
Children: Type of schooling2 5.60 (2.05 to 9.16) 0.002
Step 2: Barriers 0.07***
Attitudes 1.58 ( 2.47 to 0.69) 0.001

Self perception R2 = 0.10***


Step 1: Control variables 0.10***
Children
Type of schooling2 1.51 ( 6.27 to 3.25) 0.53
IQ level 3.25 (1.20 to 5.30) 0.002
Parents: Educational level 0.62 ( 2.47 to 1.23) 0.51
Step 2: Barriers 0.00
2 **
Autonomy R = 0.05
Step 1: Control variables 0.00
Step 2: Barriers 0.05**
Support & relations 1.03 ( 2.50 to 0.43) 0.17
Attitudes 0.68 ( 1.68 to 0.32) 0.18

Parent relation & home life R2 = 0.10***


Step 1: Control variables 0.02
Children: Type of schooling2 2.50 ( 0.13 to 5.13) 0.06
Step 2: Barriers 0.08***
Attitudes 1.36 ( 2.02 to 0.70) <0.001

Social support & peers R2 = 0.26***


Step 1: Control variables 0.11***
Children
Type of schooling2 3.81 ( 10.74 to 3.11) 0.28
GMFCS 1.01 ( 2.49 to 0.46) 0.18
IQ level 1.78 ( 4.59 to 1.04) 0.21
Step 2: Barriers 0.15***
Products and technology 0.05 ( 0.71 to 0.61) 0.88
Services, systems and policies 0.18 ( 1.10 to 0.74) 0.69
Support & relations 0.42 ( 2.44 to 1.61) 0.68
Attitudes 2.29 ( 3.60 to 0.98) 0.001

School environment R2 = 0.13***


Step 1: Control variables 0.02*
Children: Type of schooling2 3.04 (0.35 to 5.73) 0.03
Step 2: Barriers 0.11***
Attitudes 1.72 ( 2.41 to 1.03) <0.001

Social acceptance R2 = 0.12***


Step 1: Control variables 0.09***
Children
Type of schooling2 2.42 ( 1.12 to 5.96) 0.18
GMFCS 1.90 (0.75 to 3.04) 0.001
Step 2: Barriers 0.03*
Attitudes 0.89 ( 1.75 to 0.02) 0.05

Financial resources R2 = 0.12***


Step 1: Control variables 0.04
Children: Gender1 2.19 ( 2.48 to 6.86) 0.36
Parents: Educational level 2.76 ( 0.08 to 5.61) 0.06
Step 2: Barriers 0.08***
Services, systems and policies 1.22 ( 2.17 to 0.26) 0.01
318 M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321

Table 4 (Continued )

Step/variables b (95% CI) p D R2[13_TD$IF]


Attitudes 0.91 ( 2.09 to 0.28) 0.14

Displayed are unstandardized regression coefficients (b), 95% confidence intervals (95% CI) and amount of accounted variance in each respective step (D R2).
Note: Variables were conducted as follows: 1 [Male = 0, Female = 1]; 2 [Mainstream = 0, Special = 1].
* p < 0.05.
** p < 0.01.
*** p < 0.001.

3.3. Analysis of the association of attitudinal barriers with quality of life after controlling for children and parents’
sociodemographic variables and variables related to the child’s disability

In order to verify which attitudinal barriers were relevant to QoL, they were included separately in the regression analyses
of Attitudes at home and at school. In the case of the domains of Psychological well-being and Social support and peers, the
contribution of Attitudes at home was nonsignificant (p = 0.06 and p = 0.15, respectively), but that of Attitudes at school was
significant (p = 0.02 and p = 0.003, respectively).
In the rest of domains, the contribution of both Attitudes was significant: Parent relations and home life (Attitudes at
home, p < 0.001; Attitudes at school, p = 0.003), Moods and emotions (Attitudes at home, p = 0.002; Attitudes at school,
p = 0.008) and School environment (Attitudes at home, p = 0.02; Attitudes at school, p < 0.001) (Table 4).

4. Discussion

This study sought to analyze the relationship between the different child and parents’ variables that are associated with
QoL, as well as to determine the predictive power of the environmental factors that explain QoL. In accordance with our first
hypothesis, the child’s factors were found to be significantly correlated to QoL. The GMFCS level, IQ level, and the type of
schooling were associated with the parent-reported QoL. Mainly, the GMFCS level was more closely related to the different
QoL domains. Children with more motor limitations obtained low parent-reported QoL in the Physical well-being and Social
Support and peers. These results are consistent with the results of the study on the determinants of the QoL of Arnaud et al.
(2008), which also identified the presence of physical discomfort and difficulties to establish relationships with other
children. In contrast, in the domain related to the child’s feelings about the degree of peer acceptance, QoL was higher in
children with more severe motor impairment, an outcome that was not in line with that of Arnaud et al. (2008). In the
present study, we found that children with low IQ were more likely to have low QoL in Self-perception, but their QoL was
better in the domain of Social support and peers. These results do not coincide with the research of Arnaud et al. (2008) who
found that QoL decreased in this domain when children presented low IQ levels and but they had better QoL in the domain of
Self-perception. As suggested by previous studies, these conflicting results may be due to the fact that most QoL aspects are
not associated with impairments, but instead are determined by personal and environmental factors (Dickinson et al., 2007;
Majnemer et al., 2007). The type of schooling was found to be significantly associated with 6 domains of the KIDSCREEN,
indicating that children in special schools had higher QoL than children attending mainstream school. Only the parents
reported that children enrolled in ordinary schools established better relations with their peers. The results of this study do
not support previous research indicating that children in segregated schools had lower QoL (Beckung et al., 2008; Majnemer
et al., 2007).
In our study, a low association between parents’ sociodemographic variables and the QoL domains was obtained. Similar
results have been obtained in the SPARCLE group (Arnaud et al., 2008). The parents’ educational level was the only variable
that was associated with the QoL domain of Physical well-being. Previous studies of children with chronic health conditions
have shown better scores in physical functioning of children whose parents were university graduates (Beckung et al., 2008;
Font-Ribera et al., 2014; Oostenbrink et al., 2007; Yağci-Küpeli, Akyüz, Küpeli, & Büyükpamukçu, 2012).
As foreseen in the second hypothesis, parent-reported QoL is related to the perception of barriers. More specifically,
negative attitudes at home and at school correlate with low QoL in most domains of the KIDSCREEN. This result is consistent
with those found by other studies that have identified unfavorable attitudes at school as barriers (Colver et al., [28_TD$IF]2011; Colver
et al., 2012; Law et al., 2007). The non-availability of environmental facilitators in Products and technology at home, at
school, and in the community is associated with low QoL in Physical well-being. Also, Law et al. (2014) found that the QoL of
children with a physical disability depends on the environmental barriers. Therefore, this result suggests that the
accessibility of the environment can benefit the physical well-being of children and adolescents with CP. The non-availability
of other people’s support, both physical and emotional, is associated with lower QoL in the domain of Social support and
peers. It appears that these children are isolated and have few relationships with their same-age peers, results that can be
attributed both to physical and social barriers (Arnaud et al., 2008; Forsyth et al., 2007). In addition, the findings of this study
show that the non-availability of support services and adequate social protection (e.g., financial aid for adaptations at home,
financial aid for equipment, specialized personnel, etc.) is related to low QoL in the domains of Physical well-being and Social
Support and peers. This result is consistent with research reporting the parents’ concerns about the environmental factors
related to the provision of services and their frustration because of the inadequate services to meet the needs of their
children (McManus et al., 2006; Vargus-Adams & Martin, 2011).
M. Badia et al. / Research in Developmental Disabilities 49–50 (2016) 312–321 319

The ultimate purpose of this study has been to determine to what extent environmental barriers explain the parent-
reported QoL after controlling for the child and parents’ variables included in this research. The results show the relevance of
the GMFCS and IQ levels to predict children’s QoL as reported by parents. More concretely, children and adolescents with
greater motor impairment showed low QoL in the domains of Physical well-being and Social acceptance. The GMFCS level
explained 30% of the variance in the domain of Physical well-being. The degree of motor function is cited in most of the
studies as the variable that most influences physical well-being (Arnaud et al., 2008; Dickinson et al., 2007; Liu et al., 2009;
Varni, Burwinkle, & Seid, 2005). On the other hand, IQ has been confirmed as a predictor of QoL in the domain of Self-
perception, as corroborated by other research (Arnaud et al., 2008; Liu et al., 2009).
The results of this study show the importance of attitudinal barriers in the prediction of the QoL of children and
adolescents with CP. Similarly, Law et al. (2014) found that environmental factors significantly influence QoL. The results of
the regression analysis indicate that attitudes at home and at school predict six of the ten domains of the KIDSCREEN. The
negative attitudes of classmates or the lack of time to promote the child’s autonomy are reported as barriers that predict low
QoL. Colver et al. (2011), in a study on accessibility of the physical, social, and attitudinal environment, found that family and
friends had less favorable attitudes toward children with CP. Attitudes and Services, systems and policies predicted QoL in
the domain of Financial resources. The non-availability of services and general programs or programs tailored to meet the
needs of children with CP—for example, not having leisure facilities appropriate for their children or respite care—predict
dissatisfaction with economic resources. These findings may be due to the fact that parents report that access to these
programs and services restrict the lifestyle of children with CP. For example, in some studies, the parents consider the fact
that their children lack access to suitable recreational facilities as a barrier (Badia et al., 2013; Dickinson & Colver, 2011).
The main limitation of this study is that it is based on correlative evidence that precludes making statements about the
directionality of a possible effect that might be inferred from the relationship between the different variables in study.
Another limitation of the study is not having included other variables related to the child and the parents, which doubtless
could mediate between barriers and QoL. Several authors have shown the impact of pain, behavior problems, or parental
stress on QoL (Arnaud et al., 2008; Badia, [16_TD$IF]Riquelme, et al., 2014;[8_TD$IF] Chen, Tseng, Shieh, Lu, & Huang, 2014; Dickinson et al., 2007;
Majnemer et al., 2007; Riquelme et al., 2011; Swiggum et al., 2010). Therefore, future studies should include other variables
of a broader nature that may moderate the relationship between barriers and QoL. Another limitation of the study is that
parents were the informants of QoL and the barriers, so future research should also involve the reports of the children and
adolescents. Also, it should be noted that the data were extracted from a convenience sample, so the results may be biased.
Finally, it should be emphasized that the biopsychosocial perspective of disability proposed by the ICF provides a means
of understanding the different factors that affect the QoL of children and adolescents with CP (Colver, 2009). Based on this
approach, future research should verify with a model of path analysis the relationships between the different variables
within the context of a general model.
In summary, this study supports the importance of the environment for children and adolescents with CP to achieve
optimal levels of QoL. As the World Health Organization and the World Bank (2011) point out, the environment can be
modified to improve health conditions, prevent deficiencies, and improve outcomes for people with disabilities. From this
perspective, the design of interventions to raise awareness and to eradicate negative attitudes is often the first step to create
more accessible environments for children and adolescents with CP. A barrier-free environment can generate positive results
in their participation in the community and higher levels of QoL (Law et al., 2007).

Conflict of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
None the authors have any financial interest.

Acknowledgements

This research was supported by the Research Group for Excellence in Disability (GR197), Regional Government of Castile
and Leon (Spain) and by the Department of Personality, Assessment and Psychological Treatments of the University of
Salamanca (Spain). The authors would like to thank the KIDSCREEN project for the availability of quality of life instrument.
They also are grateful to Professor Allan Colver, of Newcastle University, for facilitating our use of the ECEQ instrument.

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