The International Conference on Early Childhood and Special Education (ICECSE) 2011PARENTING STRESS AND PSYCHOLOGICAL DISTRESS AMONG MOHTERS OF CHILDREN WITH AUTISM Lu Xi Yeo Kee Jiar, Assoc. Prof. Dr. Universiti Teknologi Malaysia
[email protected] [email protected] 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. Father’s 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.. 2001). Instruments Then successive sections would address the contextual framework. 2007. intended for the diagnosis of autism for clinicians.M. All of the autistic children were aged between 3-12 years old. Out of these.81). 1986).1. behavior and emotional problems is a important predictor on parenting stress and psychological among mothers of children with autism (Lyons.D. The Parental stress scale (Berry and Jones. Quantitative data was obtained to measure the parenting stress and psychological distress among the mothers. Cairney et al. 2005). 2009. Higher scores on the scale indicate greater stress. Reichler and Renner. The scores on Parental Stress Scale were also found to be significantly correlated with scores on other scale of stress. the The Childhood Autism Rating Scale (CARS) (Schopler et al. . 2007.2. The Parental Stress Scale demonstrated satisfactory levels of internal reliability (. 2003. The focus groups of study are the mothers of children with autism. The interrater reliability and internal reliability are 0.83). 2. The modified scale kept the first 14 items and deleted the last item. Phetrasuwan and Miles. 2010. and test-retest reliability (0. 2009.. 2.. 31 were Chinese from a government autism centre in Hangzhou. Herman-Stahl et al. Subjects A total of 62 mothers of children with autism were invited to answer the questionnaire. 2009. Methodology This is a comparative study between two cities of quite similar SES among samples involved in the study. such as Perceived Stress Scale (PSS) and the Parenting Stress Index (PSI).. It is a self-report scale that contains 18 items. 1. economic conditions also may influence the parenting stress and psychological distress (Skreden et al. Hoffman.94 (coefficient alpha) respectively (Schopler. 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. Phetrasuwan and Miles. Researcher modified the phrase of items to be easily comprehended by parents. Khamis. 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. 1980) is a test which includes 15 items. Chandran and Boo. clinicians and mothers. et al. rehabilitation centre in Xiaoshan and a private centre as well as recommended by other researchers.2 Factors associated with parenting stress and psychological distress have been well studied which indicated that the characteristics of child such as autisms symptom.. Khamis. Baker et al.71 (ri = 280).2010. and to find out the significant factors associated with parenting stress and psychological distress for both countries respectively.. A. 2007. and 0. Mother and family related demographic factors such as educational level. Ong. 1995) is to assess the parental stress for both mothers and fathers and for parents of children with and without clinical problems. age. C. 91.851 0. t df Sig.198 60 0.903 59.551 3.002* not assumed DASS-21 Equal variances 0. 3.903 60 0.075 0.596 2.284 0. PSS total score and DASS-21 scores Levene's Test for Equality of Variances t-test for Equality of Means F Sig.347 3.Depression Anxiety Stress Scale (Lovibond and Lovibond. Higher scores indicate greater levels of distress.000* Depression assumed Equal variances 3.002* assumed Equal variances 3.197 0. 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.746 58.179 51.602 0.633 60 0.244 0. respectively).008* assumed Equal variances 2.945 0.1.256 58.108 assumed Equal variances 1.002* not assumed Subscale Stress Equal variances 0.256 60 0. Comparisons based on measures of CARS-P. The result was showed in table 1.1995) is a set of self.746 60 0.532 0.085 2. 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. Lovibond and Lovibond (1995) found acceptable reliability (Cronbach’s alpha) for the depression.897 0. Table1. 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.034* not assumed .964 0.90.033* assumed Equal variances 2. t-test for mothers of children with autism from China and Malaysia on CARS-P total score.335 1.000* not assumed Anxiety Equal variances 3. t-test for PSS total score showed significant difference between mothers of China and Malaysia.report scales designed to measure depression.179 60 0. DASS-21 is the short version of Depression Anxiety Stress Scale (DASS). (2-tailed) CARS-P Equal variances 0. 3.36 0.408 3. .198 57. anxiety and stress scales (.008* not assumed Equal variances 0.002* assumed Equal variances 3.633 57.695 0. 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.108 not assumed PSS Equal variances 0. Chinese mothers tended to rate much higher on scale than Malaysian mothers.84 and .3 DASS. PSS. For mothers of children with autism from China. The last increased 3. and CARS-P total .307 0. 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. Table 3. Time accompany with children was the second variable forced into the equation. DASS-21. p=0.001 time accompany 0. 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 0.472 0.017 knowledge about 0. anxiety) for mothers of children with autism from China as shown in table 4. Parental Stress Scale As shown in table 3.32 0. For mothers of Malaysia. p=0.154 6.3.314. Table 2.5% variance of PPS total score. Parental Stress Scale 3. As shown in table 2. there was significant difference on DASS-21 total and its subscale scores between mothers from China and Malaysia. Childhood Autism Rating Scale Modified version for Parents.378 0.420.4% variance on PSS total score.005 CARS-P.459 0. Chinese mothers got significant greater level of psychological distress than Malaysian mothers.004 autism treatment cost 0. 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 0.272 6.427.7% variance is from the treatment cost. Parental Stress Scale. p=0.589. p=0. Another variable time accompany with children (Beta=0. p=0.4 CARS-P. PSS.417 11.085) have not met the significance level. which was selected to the next step analysis. 3. spousal relationship.8% on PSS total score. Childhood Autism Rating Scale Modified version for Parents. the 21 items version of Depression Anxiety and Stress Scale As shown in table 1.346 0. Factors associated with psychological distress All the independent variables were separately selected to run regression analysis.024). the CARS total score was the first predictive variable entered the equation.615 0.017). mothers’ age was the first variable in the regression equation which explained 32. which contributed another 9. these two variables accounted for 27. depression.2.566 0. which found three significant predictors on DASS-21 total score and its subscale scores (stress.182 0.677 0.322 14. treatment cost (Beta=0.589 0. only mothers’ age (Beta=-0. which explained another additional variance for 11.019). which explained 15.427 0.017 0.2% of the variance on PSS total score.6 0.405. The important variable-mothers’ knowledge about autism fell into the second level.father’s salary.000 with children PSS. and CARS-P total score (Beta=0.2% variance of PPS total score on mothers of children with autism in Malaysia.001) were the significant predictors.462 0.309 5. but quite near. 196 8. and fathers’ salary explain 27.001 children's age 0.433 0. 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.7% variance.472 0.628 0.009 spousal relationship 0.358 0.162 0.137 0. CARS-P and fathers’ salary explained 23.514 0.696 0.287 0. DASS-21. spousal relationship and CARS-P contributed the majority of the variance (35.434 0.426 0.2% variance.027 spousal relationship 0.407 0. the spousal relationship only added 0.160 -0.7% variance.042 0. Another variable –fathers’ salary did not increase any variance after forced into the equation.349 0. Table 5.029 0.540 0. Childhood Autism Rating Scale Modified version for Parents.192 0.023 CARS-P 0.041 Anxiety fathers’ salary 0.015 spousal relationship 0.014 Depression Fathers’ salary 0. 50.402 0. There was one more significant predictor which is children’s age for DASS-21 depression subscale score. For the depression subscale score.002 CARS-P 0. Table 4.599 0.265 0.634 0.398 0.243 4.002 CARS-P 0.301 0. Childhood Autism Rating Scale Modified version for Parents.007 CARS-P.275 6. CARS-P.1% of variance was from spousal relationship.212 0.528 0.565 0.336 0.153 -0.129 -0.551 0.827 0.267 11.884 0. CARS-P.196 0.001 fathers' salary 0.001 Subscale Stress spousal relationship 0.570 0.37 6.223 0. the 21 items version of Depression Anxiety and Stress Scale .359 9.694 0. DASS-21. For the anxiety subscale score.9%).002 Subscale Stress Fathers’ salary 0.008 Depression spousal relationship 0.433 0.599 0. 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 0.239 0. But father’s salary only added 0.436 0.514 0.591 0.472 0.004 fathers' salary 0.6% variance.331 0.927 0.236 5.1% variance.254 0.742 0.324 0.501 11.449 0.336 16.445 13.658 0.535 0. and children’s age. 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 0.003 CARS-P 0.017 spousal relationship 0.011 spousal relationship 0. For DASS-21 total score.000 CARS-P 0.000 Anxiety CARS-P 0.003 CARS-P 0.107 -0. the significant predictors found in the first step which were spousal relationship.014 CARS-P.412 0.174 -0.277 4.319 0. Fathers’ salary only increased 1.239 10. For the stress subscale score.000 children's age 0.291 0.482 0.000 CARS-P 0.267 0.007 fathers' salary 0.569 0.54 0.5 score.369 0. 240 0. Educational level as the last variable fell into the equation did not contribute any variance (table 7). together.8% of variance.775 0.005 Treatment cost 0.720 0.033 Treatment cost 0.036 Treatment cost 0.398 0.373 0.518 0.000 CARS-P.632 0.045 0.118 0.332 0.128 -0.647 0. the 21 items version of Depression Anxiety and Stress Scale 4.631 0.1.027 spousal relationship 0.378 19.508 11.378 0.013 DASS-21. which demonstrated a great number of variance (57.2%).039 spousal relationship 0. 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 0.811 0. The two significant variables (treatment cost. Table 7.000 Anxiety Treatment cost 0.705 0.398 20.601 0. Discussion Based on the results above.488 0.000 Subscale Stress spousal relationship 0.572 21. explained 50.399 0.497 0.045 0.378 19.631 0. discussion will focus on the level of stress and distress among mothers of children with autism from Hangzhou and Johor Bahru.000 Depression Education level 0.6 The significant predictors for mothers of children with autism in Malaysia on DASS-21 total score and depression subscale score were mothers’ educational level. For the depression subscale score.000 Educational level 0. For the stress subscale score.747 0. only treatment cost met the significance level.000 Spousal relationship 0.557 0. Childhood Autism Rating Scale Modified version for Parents. spousal relationship and treatment cost (table 6). the spousal relationship and treatment cost were the significant predictors.4% of variance was explained by treatment cost and spousal relationship. Mothers of children with autism from China and Malaysia .632 0. followed by educational level and spousal relationship.461 13.000 Subscale Stress Treatment cost 0.000 Spousal relationship 0.215 0. treatment cost was the first enter into the regression equation.396 0.378 0.418 0.114 0.647 0.212 0.443 0. 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 48.841 0.110 -0.169 0.000 spousal relationship 0. Table 6.484 15. 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 0.399 0. DASS-21.378 0.000 Depression Treatment cost 0. For the anxiety subscale score. spousal relationship) found in the first step for stress subscale successfully entered the last regression equation. 4.384 0. The perceived severity of autistic symptom (CARS-P) was in the similar level on these two groups. 1994). Hoffman.e. In this study. 2006. tended to get higher level of parenting stress. It is difficult to find out a relative research on comparison of mothers from China and Malaysia. but also need to pay attention on their other children. parenting stress among mothers of children with autism in Malaysia was related to mothers’ age and time accompany with child. most families in China only have one child. Mothers put in a lot of effort on their only child. 2009). Then mothers in Malaysia become less stress when they get older and assistance from other children. the significant factors associated with parenting stress among mothers in China are different from mothers in Malaysia. 2006. 4. The possible reason for this difference may be attributed to the one-child plan policy in China. (2010) in American which indicated that older Asian American parents reported lower level of parenting stress than younger ones. i. 2010). and severity of autism symptom. showed that increased parenting stress was associated with accumulated time accompanied with their children every day. Mothers in China who perceived higher severity level of autism symptom. The main difference was that parenting stress of mothers in Malaysia was not associated with the child’s autism symptom and problems compared to the Chinese. 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.. Majority of mothers in Malaysia have more than two children. depression and anxiety) which implicated that the level of psychological distress on Chinese mothers were higher than Malaysian mothers. 2010. Mothers in China tended to report higher level of . race or ethnicity differences among parents and families (Magaña and Smith.2. 4. The normal developing child may provide help to their mother on taking care of their sibling with autism as they grow up. Costa et al. 2009. as well as the DASS-21 total score and its subscale score (stress. Another significant factor found in this study for mothers in Malaysia which is the time accompanied with children.3. they tend to report lower level of parenting stress. cost more on treating their children and mastered more knowledge about autism. 2004. The positive behavior or support of the normal developing child may be the buffer effect on parenting stress (Huber. Parenting stress and mothers of children with autism This study discovered three significant factors associated with parenting stress among Chinese mothers. but it is consistent with an array of researches which found country. their stress did not release. et al. Phetrasuwan and Miles. know more about their children’s special condition. It was found that Chinese mothers got much higher level of parenting stress than mothers in Malaysia. culture. treatment cost. On the other hand.. Roberts. they do not only take care of their autistic child. knowledge about autism. Dyches et al. This finding is consistent with the research conducted by DeLambo et al. which is the severity of autism symptoms.7 This study examined the level of stress and distress among mothers of children with autism. This finding is consistent with many previous researches which considered the child’s autism symptoms and behaviour problems significantly associated with parenting stress (Lyons. Unlike families in Malaysia. For older mothers. As they became older. For future research. rehabilitation centres or schools which provide diagnose. Cain et al. personality. 2007. which is consistent with the prior research. The amount of cost depends on mothers’ plan for their children. 5. tended to report less distress compare to the lower education ones. The important predictors for parenting stress and psychological distress were very different. the possible reason was discussed above in parenting stress. Educational level may influence the psychological status (Skreden et al. . 2005). coping skill.8 psychological symptom (depression. is the significant predictor of psychological distress (Khamis. and stress) as they perceived more severe autistic symptom of their children. But the treatment cost among most families with autistic children in China is in the similar level. 2010). tended to rate higher level of distress. Many previous research supported this finding. 2005). Another important predictor is the treatment cost. Prior researches confirmed this finding that family economic condition may influence the individual’s psychological status (Cain et al. who reported worse in spousal relationship. parental distress (Khamis. Mothers. which is the one-child plan policy in China. The spousal relationship is also a significant predictor of psychological distress among mothers of children with autism in Malaysia.2007. autism centres.. This can be discussed in the perspective of economic condition. They only provide one or two hours half day service. anxiety. Another two significant factors associated with the psychological distress of mothers in China is spousal relationship and father’s income. There is no significant difference on treatment cost in Malaysia and China. are under government. 2005). Many mothers in Malaysia likely selected more than one centre or school to educate or train their children. Lower level of economic condition was associated with 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. 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. behavior. which is related to all aspects of psychological distress include depression. which showed its important role on parents’ psychological status. 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. anxiety. which indicated that the characteristics of child such as severity of disabilities. majority of established hospitals. 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. 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