1. Introduction
Disability usually occurs suddenly and unexpectedly as an undesired incident [
1]. According to the World Health Organization statistics, a disabled child is born every 8 minutes in the world [
2]. Three to 7 children per 1000 are born with Intellectual Disability (ID) [
3]. In developing countries, 10 to 15% of people are affected with disabilities [
4], from which, 1 to 3% suffer from ID. ID refers to individuals with an IQ of less than 70 with impaired adaptive functions that has been occurred before the age of 18 years [
5]. In Iran, a massive amount of more than 1.5 million people suffer from disabilities. Three percent of these people have severe disability, and according to the 2006-2011 censuses, ID accounts for the highest rate of disabilities [
6].
Coping with this crisis depends on personal characteristics, lifestyle type, remaining abilities, cooperation of family members, and the role of rehabilitation team [
1]. Parents, among family members, are the principle models of understanding and acceptance for the disabled person. Therefore, parents’ response to their children’s mental retardation plays a vital role in creating a favorable atmosphere for the disabled child and other family members [
7]. Parents’ reactions to their child’s condition also vary according to their personality characteristics, time, and so on [
7]. One of the most important determinants in this regard is the Quality of Life (QoL) of mothers, as the main caregivers of the disabled children [
8].
In recent years, QoL, and in particular, the health-related QoL, has been significantly considered as an important indicator in assessing people’s well-being [
9,
10]. The QoL is the people’s perception and understanding of their position in relation to their goals and values according to the objective living conditions [
3]. While QoL includes many aspects, health-related QoL is mainly related to biopsychological health [
11] and expresses the functional effects of illness and its outcomes on people’s perceptions.
The QoL is affected by different living conditions of people at individual, family and social levels [
12]. One of these stressful situations is the birth or presence of a disabled child; particularly a child with ID in the family [
13]. Caring for children with a disability with specific physical, emotional and social needs often affects family functions and is associated with many emotional and behavioral problems for parents and especially mothers [
14-16]. A disabled child refers to a child with a mental or physical disorder or a combination of both [
17]. Such children might be considered disable by the community due to their appearance or behavior and functional/activity limitations, or be formally identified as such [
18].
Studies suggest that biopsychological health and consequently the QoL of mothers with disabled children are significantly lower than those with healthy children [
19-23]. Moreover, parents of children with ID appear to tolerate more stress and anxiety than other parents [
5,
24]. Such stress and anxiety may be related to their children’s future problems, disability costs, people’s impressions and attitudes towards the children, parent’s wishes, etc. that greatly affect the parents’ QoL.
In Iran, a number of studies also identified a difference between the QoL of mothers with disabled children and mothers of healthy children [
25-27]. This also applies to mothers of children with ID [
28]. Children with ID have more needs than other healthy children [
5,
13,
24]; they impose more emotional and economic burden on parents [
6], and their mothers are often the ones to bear the most burden, because of their close relationship with their children. Thus, they tend to endure more problems than other mothers.
In the rehabilitation services (secondary and tertiary prevention levels) aimed at disabled people, teams of medical rehabilitation, professional rehabilitation and social rehabilitation, work together and the disable person’s family is also part of the social rehabilitation team [
1]. Investigating QoL is important in parents with disabled children [
29]. The concept of QoL depends on the socio-cultural context. The number of disabled people is growing in Iran. There are limited studies on the QoL of mothers of children with ID. Thus, this study was conducted to evaluate the QoL of mothers of children with ID in Shahr-e-kord City, Iran.
2. Methods
This descriptive and analytical study was conducted in Shahr-e-kord City, Chaharmahal and Bakhtiari Province from October 2015 to June 2016. Samples included 2 groups of mothers. Group A) Mothers of Mentally Retarded Children (MMRC) including educable intellectually disabled with an IQ of 50 to 70, trainable children with an IQ of 25 to 50, and isolated children with an IQ of ˃25 [
30]. According to State Welfare Organization of Chaharmahal and Bakhtiari, the number of children with ID has been 1125 persons since 2016. Group B) Mothers of Children with Normal Intelligence (MCNI).
Based on a moderate effect size of 0.3, a statistical power of 0.80, alpha of 0.05, equal proportion of 2 groups of mothers, as well as considering an additional 10% samples in each group, the final sample size was considered to be 306 people. Mothers having children of under 18 years of age in group A were selected by convenience sampling method from Nikan comprehensive rehabilitation center, Mehregan comprehensive center and Bording center of Ferdows for caring of intellectually disabled children. Mothers of children below 18 years of age in group B were selected by random sampling method. The samples of group B were assessed at their place of residence.
Mothers’ QoL was measured by the 36-item Short Form Health Survey (SF-36). Its validity and reliability have been confirmed on the Iranian population by Montazeri and colleagues [
31]. The SF-36 contains 36 questions that are used to compute scores on 8 components. Its components include physical functioning, role limitation because of physical health problems, bodily pain, general health, vitality, social functioning, role limitation due to emotional health problems, and mental health. Its scores range between 0 and 100, with a higher score representing a better health related QoL [
31].
In the current study, the Cronbach alpha coefficients of all dimensions were ≥0.735. Subjects completed the study tools with an informed consent and full knowledge of the research objectives. The obtained data were analyzed by 1-way Analysis of Variance (ANOVA), multiple linear regression and discriminant analysis in SPSS.
3. Results
The Mean±SD age of mothers of educable, trainable, isolated children and normal children were 42±1.56, 46.7±1.65, 44.5±1.58 and 35.9±0.89 years, respectively (ANOVA results: F[3,294]=18.03, P<0.001). Mothers and their spouse’s educational level, as well as Socioeconomic Status (SES) of the family with respect to the children’s condition are presented in Table 1. The Chi-Square Test results revealed a significant relationship between the 3 variables and the child’s condition (Table 1).
Initially, we estimated adjusted scores for each dimension and the total index of QoL by 4 predictive variables (i.e. mothers’ age, educational level of mothers and spouses and SES) in a multiple linear regression model (Formula 1). Then, we compared the QoL status among the 4 groups of mothers. ANOVA results are presented in (Tables 2 and 3.
Formula (1): Adjusted score=Constant-β1(age)+β2 (Mother’s educational level)+ β3(Spouse’s educational level)+ β4(SES).
According to between-groups 1-way ANOVA results, there was a statistically significant difference at P<0.05 in all dimensions and in the total score of QoL for the 4 groups of mothers (Tables 2 and 3). Post-hoc comparisons using Tukey’s HSD (Honestly Significant Difference) Test indicated that the mean score of mothers of normal children was statistically different from the
other 3 groups.
Assessing the dimensions of QoL in the current study revealed a significant difference between the QoL of mothers of children with ID and mothers of healthy children. In addition, the QoL of mothers of healthy children was higher in all 8 dimensions. This result is in line with the findings of Mubaraki and Bagheri [
33], Malekshahi et al. [
6] and Haqh-Ranjbar et al. [
34] who examined the QoL of mothers of children with ID. Findings of this study are also consistent with the studies that examined the QoL of mothers of disabled children in general term [
5,
13,
25,
26,
35]. The greatest difference between the 2 groups related to the dimension of physical role (40.7%). This data suggests that, mothers of disabled children were facing more physical limitations in their role.
The slightest difference between the 2 groups related to the dimension of emotional role (30.9%). This finding means that although mothers with disabled children are facing more limitations in their emotional role than those of healthy children, the two groups have the least differences in this dimension of QoL compared to other dimensions.
The QoL in all 3 groups of mothers of children with ID was not at a good level. However, the QoL of mothers of educable children was lower than that of mothers of trainable and isolated children. However, there were no significant differences among three groups of mothers in terms of dimensions of QoL and overall score. Such data indicated no significant difference between the severity of ID of children and QoL of mothers. These findings are inconsistent with the studies by Maleshahi and Fallahi [
6], Amiri-Majd et al. [
36], Ahmadi et al. [
13], and Fadakar sogheh et al. [
24]. This discrepancy is probably due to controlling other underlying and social variables in those studies. In the current study, before controlling and modifying the score of other variables, a significant difference was also found between the severity of disability and QoL.
Limitations of this research include selecting mothers of children with ID by convenience sampling method. Furthermore, the used tool in this study was designed for measuring QoL in the general population. However, the mothers of children with ID might have had condi
tions affecting their QoL, which have not been included in SF-36.
Furthermore, some personality traits of the mothers might have affected their QoL which were overlooked in this study.