The International Conference on Early Childhood and Special Education (ICECSE) 2011

PARENTING STRESS AND PSYCHOLOGICAL DISTRESS AMONG MOHTERS OF CHILDREN WITH AUTISM
Lu Xi Yeo Kee Jiar, Assoc. Prof. Dr.
Universiti Teknologi Malaysia cat1982218@yahoo.com.cn kjyeo_utm@yahoo.com This study compared the parenting stress and psychological distress among mothers of children with autism in China and Malaysia, as well as identifies the significant factors associated with parenting stress and distress. Three instruments were used for data collection, namely the Childhood Autism Rating Scale Modified version for Parents (CARSP), Parental Stress Scale (PSS), and The 21 items version of Depression Anxiety and Stress Scale (DASS-21). Mothers of children with autism in Hangzhou, China reported significant higher level of parenting stress and psychological distress than mothers in Johor Bahru, Malaysia. CARS total score, knowledge about autism and treatment cost is the significant predictors for parenting stress of mothers in China. For mothers in Malaysia, the significant factors are mothers age and time spent to accompany children. For psychological distress, spousal relationship is the co-significant predictor for both mothers from China and Malaysia. Fathers salary and CARS-P total score were the other two important factors associated to psychological distress of mothers in China. Psychological distress among mothers in Malaysia was associated with the mothers educational level and treatment cost. The results portrayed the possibility of environmental influence that may need further research. key words: autism, parenting stress, psychological distress

Keywords

Keyword 1 autism Keyword 2 psychological distress autism, ,

parenting stress Keyword 3 -

Introduction stress, psychological distress autism, parenting

autism, parenting studied that parents of children with disabilities such as autism It has been well stress, psychological distress autism, parenting level psychological stress are in the higherstress, of parenting distressand easy to get psychological distress (Estes et al., 2009; Liu et al., 2006; Greenberg et al., 2004). Autism is a neurological disorder that can impair communication, socialization and behaviour. It is usually diagnosed within the first three years of life and is four times more common in boys than in girls. Most parents or caregivers suffer higher level of stress and psychological distress (Estes et al., 2009; Schieve et al., 2007). The parenting differences on ethnicity or culture groups have been confirmed by prior researches (DeLambo et al., 2010; Shariff, 2009; Cheah et al., 2009). This preliminary study intends to show a stress and distress profiles on mothers of children with autism and find out the country specific factors and general factors for China and Malaysia. Researches on this area are very sparse and limited.

2 Factors associated with parenting stress and psychological distress have been well studied which indicated that the characteristics of child such as autisms symptom, behavior and emotional problems is a important predictor on parenting stress and psychological among mothers of children with autism (Lyons, A.M. et al., 2010; Hoffman, C.D., 2009; Phetrasuwan and Miles, 2009; Khamis, 2007; Baker et al. 2005). Mother and family related demographic factors such as educational level, age, economic conditions also may influence the parenting stress and psychological distress (Skreden et al.,2010; Phetrasuwan and Miles, 2009; Herman-Stahl et al., 2007; Khamis, 2007; Cairney et al., 2003; Ong, Chandran and Boo, 2001).

1. Objectives of study
This study aims to compare the level of parenting stress and psychological distress among mothers of children with autism in China and Malaysia, and to find out the significant factors associated with parenting stress and psychological distress for both countries respectively.

2. Methodology
This is a comparative study between two cities of quite similar SES among samples involved in the study. The focus groups of study are the mothers of children with autism. Quantitative data was obtained to measure the parenting stress and psychological distress among the mothers. 2.1. Subjects A total of 62 mothers of children with autism were invited to answer the questionnaire. Out of these, 31 were Chinese from a government autism centre in Hangzhou, rehabilitation centre in Xiaoshan and a private centre as well as recommended by other researchers, clinicians and mothers. Another 31 mothers were from Johor Bahru with their autistic children who study in special classes in public schools and autism centre in Johor Bahru. All of the autistic children were aged between 3-12 years old. 2.2. Instruments Then successive sections would address the contextual framework, the The Childhood Autism Rating Scale (CARS) (Schopler et al., 1980) is a test which includes 15 items, intended for the diagnosis of autism for clinicians. The interrater reliability and internal reliability are 0.71 (ri = 280), and 0.94 (coefficient alpha) respectively (Schopler, Reichler and Renner, 1986). The modified scale kept the first 14 items and deleted the last item. Researcher modified the phrase of items to be easily comprehended by parents. The Parental stress scale (Berry and Jones, 1995) is to assess the parental stress for both mothers and fathers and for parents of children with and without clinical problems. It is a self-report scale that contains 18 items. Higher scores on the scale indicate greater stress. The Parental Stress Scale demonstrated satisfactory levels of internal reliability (.83), and test-retest reliability (0.81). The scores on Parental Stress Scale were also found to be significantly correlated with scores on other scale of stress, such as Perceived Stress Scale (PSS) and the Parenting Stress Index (PSI).

3 DASS- Depression Anxiety Stress Scale (Lovibond and Lovibond,1995) is a set of self- report scales designed to measure depression, anxiety and stress. The scale is rated on a four-point Likert scale of frequency or severity of the participants' experiences over the last week. DASS-21 is the short version of Depression Anxiety Stress Scale (DASS). Higher scores indicate greater levels of distress. Lovibond and Lovibond (1995) found acceptable reliability (Cronbachs alpha) for the depression, anxiety and stress scales (.91, .84 and .90, respectively).

3. Results
Results showed the comparisons among two groups of mothers from Hangzhou and Johor Bahru in their parenting stress and psychological distress having children with autism. 3.1. Comparisons based on measures of CARS-P, PSS and DASS-21 Independent sample t-test was applied to examine the group difference between mothers from China and Malaysia on each scale score. The result was showed in table 1. The t-test indicated that there was no significant difference between mothers from China and Malaysia on the total score of Childhood Autism Rating Scale Modified version for parents. t-test for PSS total score showed significant difference between mothers of China and Malaysia. Chinese mothers tended to rate much higher on scale than Malaysian mothers.
Table1. t-test for mothers of children with autism from China and Malaysia on CARS-P total score, PSS total score and DASS-21 scores Levene's Test for Equality of Variances t-test for Equality of Means F Sig. t df Sig. (2-tailed) CARS-P Equal variances 0.945 0.335 1.633 60 0.108 assumed Equal variances 1.633 57.602 0.108 not assumed PSS Equal variances 0.897 0.347 3.256 60 0.002* assumed Equal variances 3.256 58.197 0.002* not assumed DASS-21 Equal variances 0.695 0.408 3.198 60 0.002* assumed Equal variances 3.198 57.244 0.002* not assumed Subscale Stress Equal variances 0.284 0.596 2.746 60 0.008* assumed Equal variances 2.746 58.851 0.008* not assumed Equal variances 0.36 0.551 3.903 60 0.000* Depression assumed Equal variances 3.903 59.532 0.000* not assumed Anxiety Equal variances 3.075 0.085 2.179 60 0.033* assumed Equal variances 2.179 51.964 0.034* not assumed

CARS-P, Childhood Autism Rating Scale Modified version for Parents; PSS, Parental Stress Scale; DASS-21, the 21 items version of Depression Anxiety and Stress Scale

As shown in table 1, there was significant difference on DASS-21 total and its subscale scores between mothers from China and Malaysia. Chinese mothers got significant greater level of psychological distress than Malaysian mothers. 3.2. Factors associated with parenting stress The simple regression model for each potential variables showed that the significant predictors on mothers from China were knowledge about autism (Beta=0.405, p=0.024), treatment cost (Beta=0.420, p=0.019); and CARS-P total score (Beta=0.427, p=0.017). For mothers of Malaysia, only mothers age (Beta=-0.589, p=0.001) were the significant predictors. Another variable time accompany with children (Beta=0.314, p=0.085) have not met the significance level, but quite near, which was selected to the next step analysis. For mothers of children with autism from China, the CARS total score was the first predictive variable entered the equation, which explained 15.4% variance on PSS total score. The important variable-mothers knowledge about autism fell into the second level, which explained another additional variance for 11.8% on PSS total score. As shown in table 2, these two variables accounted for 27.2% of the variance on PSS total score. The last increased 3.7% variance is from the treatment cost.
Table 2. Summary of Hierarchical Regression Analysis of Adjusted PSS Total Score of Mothers of children with autism from China Variable entered R R Square Adjusted R Square F P CARS-P 0.427 0.182 0.154 6.462 0.017 knowledge about 0.566 0.32 0.272 6.6 0.004 autism treatment cost 0.615 0.378 0.309 5.472 0.005 CARS-P, Childhood Autism Rating Scale Modified version for Parents; PSS, Parental Stress Scale

As shown in table 3, mothers age was the first variable in the regression equation which explained 32.2% variance of PPS total score on mothers of children with autism in Malaysia. Time accompany with children was the second variable forced into the equation, which contributed another 9.5% variance of PPS total score.
Table 3. Summary of Hierarchical Regression Analysis of Adjusted PSS Total Score of Mothers of children with autism from Malaysia Variable entered R R Square Adjusted R Square F P Mothers age 0.589 0.346 0.322 14.307 0.001 time accompany 0.677 0.459 0.417 11.017 0.000 with children PSS, Parental Stress Scale

3.3. Factors associated with psychological distress All the independent variables were separately selected to run regression analysis, which found three significant predictors on DASS-21 total score and its subscale scores (stress, depression, anxiety) for mothers of children with autism from China as shown in table 4- fathers salary, spousal relationship, and CARS-P total

5 score. There was one more significant predictor which is childrens age for DASS-21 depression subscale score.
Table 4. Summary of regression analysis on significantly predicting DASS-21 total score and its subscale score for parents of children with autism in China Significant Predictors Adjusted R Square Beta P DASS-21 Fathers salary 0.174 -0.449 0.011 spousal relationship 0.267 0.540 0.002 CARS-P 0.254 0.528 0.002 Subscale Stress Fathers salary 0.129 -0.398 0.027 spousal relationship 0.239 0.514 0.003 CARS-P 0.162 0.436 0.014 Depression Fathers salary 0.160 -0.433 0.015 spousal relationship 0.336 0.599 0.000 CARS-P 0.301 0.570 0.001 children's age 0.107 -0.369 0.041 Anxiety fathers salary 0.153 -0.426 0.017 spousal relationship 0.137 0.407 0.023 CARS-P 0.196 0.472 0.007 CARS-P, Childhood Autism Rating Scale Modified version for Parents; DASS-21, the 21 items version of Depression Anxiety and Stress Scale

Table 5 is the result of hierarchical regression analysis for DASS-21 score of mothers in China. For DASS-21 total score, spousal relationship and CARS-P contributed the majority of the variance (35.9%). Fathers salary only increased 1.1% variance. For the stress subscale score, the significant predictors found in the first step which were spousal relationship, CARS-P, and fathers salary explain 27.7% variance. But fathers salary only added 0.2% variance. For the depression subscale score, 50.1% of variance was from spousal relationship, CARS-P, and childrens age. Another variable fathers salary did not increase any variance after forced into the equation. For the anxiety subscale score, CARS-P and fathers salary explained 23.6% variance, the spousal relationship only added 0.7% variance.
Table 5. Summary of Hierarchical Regression Analysis of DASS-21 Total Score and its subscale score for Mothers of children with autism in China R Adjusted R Variable entered R Square Square F P DASS-21 spousal relationship 0.54 0.291 0.267 11.927 0.002 CARS-P 0.634 0.402 0.359 9.412 0.001 fathers' salary 0.658 0.433 0.37 6.884 0.001 Subscale Stress spousal relationship 0.514 0.265 0.239 10.434 0.003 CARS-P 0.569 0.324 0.275 6.696 0.004 fathers' salary 0.591 0.349 0.277 4.827 0.008 Depression spousal relationship 0.599 0.358 0.336 16.192 0.000 CARS-P 0.694 0.482 0.445 13.029 0.000 children's age 0.742 0.551 0.501 11.042 0.000 Anxiety CARS-P 0.472 0.223 0.196 8.331 0.007 fathers' salary 0.535 0.287 0.236 5.628 0.009 spousal relationship 0.565 0.319 0.243 4.212 0.014 CARS-P, Childhood Autism Rating Scale Modified version for Parents; DASS-21, the 21 items version of Depression Anxiety and Stress Scale

6 The significant predictors for mothers of children with autism in Malaysia on DASS-21 total score and depression subscale score were mothers educational level, spousal relationship and treatment cost (table 6). For the stress subscale score, the spousal relationship and treatment cost were the significant predictors. For the anxiety subscale score, only treatment cost met the significance level.
Table 6. Summary of regression analysis on significantly predicting DASS-21 total score and its subscale score for parents of children with autism in Malaysia Significant Predictors Adjusted R Square F P DASS-21 Education level 0.110 -0.373 0.039 spousal relationship 0.118 0.384 0.033 Treatment cost 0.378 0.632 0.000 Subscale Stress spousal relationship 0.212 0.488 0.005 Treatment cost 0.378 0.631 0.000 Depression Education level 0.128 -0.396 0.027 spousal relationship 0.114 0.378 0.036 Treatment cost 0.398 0.647 0.000 Anxiety Treatment cost 0.169 0.443 0.013 DASS-21, the 21 items version of Depression Anxiety and Stress Scale

The hierarchical regression analysis with DASS-21 total score as the dependent variable showed that the 48.4% of variance was explained by treatment cost and spousal relationship. Educational level as the last variable fell into the equation did not contribute any variance (table 7). The two significant variables (treatment cost, spousal relationship) found in the first step for stress subscale successfully entered the last regression equation, which demonstrated a great number of variance (57.2%). For the depression subscale score, treatment cost was the first enter into the regression equation, followed by educational level and spousal relationship, together, explained 50.8% of variance.
Table 7. Summary of Hierarchical Regression Analysis of DASS-21 Total Score and its subscale score for Mothers of children with autism in Malaysia R Adjusted R Variable entered R Square Square F P DASS-21 Treatment cost 0.632 0.399 0.378 19.240 0.000 Spousal relationship 0.720 0.518 0.484 15.045 0.000 Subscale Stress Treatment cost 0.631 0.399 0.378 19.215 0.000 Spousal relationship 0.775 0.601 0.572 21.045 0.000 Depression Treatment cost 0.647 0.418 0.398 20.841 0.000 Educational level 0.705 0.497 0.461 13.811 0.000 spousal relationship 0.747 0.557 0.508 11.332 0.000 CARS-P, Childhood Autism Rating Scale Modified version for Parents; DASS-21, the 21 items version of Depression Anxiety and Stress Scale

4. Discussion
Based on the results above, discussion will focus on the level of stress and distress among mothers of children with autism from Hangzhou and Johor Bahru. 4.1. Mothers of children with autism from China and Malaysia

7 This study examined the level of stress and distress among mothers of children with autism. It was found that Chinese mothers got much higher level of parenting stress than mothers in Malaysia, as well as the DASS-21 total score and its subscale score (stress, depression and anxiety) which implicated that the level of psychological distress on Chinese mothers were higher than Malaysian mothers. The perceived severity of autistic symptom (CARS-P) was in the similar level on these two groups. It is difficult to find out a relative research on comparison of mothers from China and Malaysia, but it is consistent with an array of researches which found country, culture, race or ethnicity differences among parents and families (Magaa and Smith, 2006; Costa et al, 2006; Dyches et al., 2004; Roberts, 1994). 4.2. Parenting stress and mothers of children with autism This study discovered three significant factors associated with parenting stress among Chinese mothers, i.e. knowledge about autism, treatment cost, and severity of autism symptom. Mothers in China who perceived higher severity level of autism symptom, cost more on treating their children and mastered more knowledge about autism, tended to get higher level of parenting stress. This finding is consistent with many previous researches which considered the childs autism symptoms and behaviour problems significantly associated with parenting stress (Lyons, et al., 2010; Hoffman, 2009; Phetrasuwan and Miles, 2009). On the other hand, parenting stress among mothers of children with autism in Malaysia was related to mothers age and time accompany with child. For older mothers, they tend to report lower level of parenting stress. This finding is consistent with the research conducted by DeLambo et al. (2010) in American which indicated that older Asian American parents reported lower level of parenting stress than younger ones. Another significant factor found in this study for mothers in Malaysia which is the time accompanied with children, showed that increased parenting stress was associated with accumulated time accompanied with their children every day. In this study, the significant factors associated with parenting stress among mothers in China are different from mothers in Malaysia. The main difference was that parenting stress of mothers in Malaysia was not associated with the childs autism symptom and problems compared to the Chinese. The possible reason for this difference may be attributed to the one-child plan policy in China. Unlike families in Malaysia, most families in China only have one child. Mothers put in a lot of effort on their only child. As they became older, know more about their childrens special condition, their stress did not release. Majority of mothers in Malaysia have more than two children; they do not only take care of their autistic child, but also need to pay attention on their other children. The positive behavior or support of the normal developing child may be the buffer effect on parenting stress (Huber, 2010). The normal developing child may provide help to their mother on taking care of their sibling with autism as they grow up. Then mothers in Malaysia become less stress when they get older and assistance from other children. 4.3. Psychological distress and mothers of children with autism One of the significant factors related to psychological distress among mothers of children with autism in China is the same with the parenting stress, which is the severity of autism symptoms. Mothers in China tended to report higher level of

8 psychological symptom (depression, anxiety, and stress) as they perceived more severe autistic symptom of their children. Many previous research supported this finding, which indicated that the characteristics of child such as severity of disabilities, behavior, emotional problems, is the significant predictor of psychological distress (Khamis,2007; Baker et al. 2005). Another two significant factors associated with the psychological distress of mothers in China is spousal relationship and fathers income, which is consistent with the prior research. Lower level of economic condition was associated with depression, anxiety, parental distress (Khamis, 2007; Cain et al., 2005). The spousal relationship is also a significant predictor of psychological distress among mothers of children with autism in Malaysia. Mothers, who reported worse in spousal relationship, tended to rate higher level of distress. Another important predictor is the treatment cost, which is related to all aspects of psychological distress include depression, anxiety and stress in this study. Mothers in Malaysia likely reported higher level of distress as the increase in the treatment cost of their autistic children. This can be discussed in the perspective of economic condition. Prior researches confirmed this finding that family economic condition may influence the individuals psychological status (Cain et al., 2005). Educational level may influence the psychological status (Skreden et al. 2010). This study also found that mothers in Malaysia, who were well educated, tended to report less distress compare to the lower education ones. The spousal relationship is the significant predictor of psychological distress for both mothers in China and Malaysia, which showed its important role on parents psychological status. This may be a cross-culture factor which may affect the psychological distress among parents in different countries. For the factor differences, the possible reason was discussed above in parenting stress, which is the one-child plan policy in China. There is no significant difference on treatment cost in Malaysia and China. But the treatment cost among most families with autistic children in China is in the similar level. In China, majority of established hospitals, autism centres, rehabilitation centres or schools which provide diagnose, training and education, are under government. Situation in Malaysia is very different as compared to China where most established centres or famous schools in Malaysia are owned by private entities or non-government organizations. They only provide one or two hours half day service. Many mothers in Malaysia likely selected more than one centre or school to educate or train their children. The amount of cost depends on mothers plan for their children.

5. Conclusion
This study found a significantly higher parenting stress and psychological distress among mothers of children with autism in China compared to their Malaysian counterparts. The important predictors for parenting stress and psychological distress were very different, only the spousal relationship affected the psychological distress of mothers in both countries. The findings showed various concerns and challenges mothers faced with in China and Malaysia. For future research, it is suggested a bigger sample size should be used and to include other potential predictors of parenting stress and psychological distress such as religion, coping skill, personality.

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