指導教授:曾美惠臺灣大學:職能治療研究所莊宜靜Chuang, I-ChingI-ChingChuang2014-11-302018-07-092014-11-302018-07-092014http://ntur.lib.ntu.edu.tw//handle/246246/264406本論文包含兩篇研究。第一個研究藉由同時考慮孩童與照顧者因子,如:照顧者的心理健康與親職壓力,確認學齡前泛自閉症孩童之健康相關生活品質預測因子。第二個研究藉由同時考慮孩童、家庭及支持系統之完整面向,並使用結構方程模式分析方法,探討學齡前泛自閉症孩童之家庭生活品質預測因子與其相關影響。 共有106位年齡為36至70個月的孩童參與第一個研究。參與第二個研究的106個家庭中,大部分填答者為親生母親,年齡為24至46歲。 第一個研究結果指出泛自閉症孩童的健康相關生活品質預測因子涵蓋孩童與照顧者因素。其中較特別的為:孩童有較好的社會與情緒面向之生活品質,仰賴於照顧者犧牲他們的心理健康。在第二個研究中顯示:父母的社經地位、孩童的情緒與行為問題、以及孩童每周接受治療服務的總時數,對家庭生活品質均有直接的影響。 這篇論文主要指出在關注泛自閉症孩童之健康相關預測因子時,同時也要重視照顧者親職壓力之需求,以及他們的心理狀態。再者,當提供評估和介入時,本論文結果能為臨床工作者帶來良好的引導,提升泛自閉症孩童健康相關生活品質;亦可提供決策者在做政策決定與提供服務時更明確的方向,給予這些家庭更好的支持。 此外,我們建議政府在制定孩童接受特殊服務之相關政策時,不僅須將家庭獨特的社經地位放入考量,也需要提供適當的專業服務時數和適合的資源,來滿足家庭的需求。最後,本論文結果可以支持臨床工作者來建構以家庭為基礎的介入服務,給予泛自閉症孩童及其家庭更好的服務。This dissertation consisted of two studies. In the first study, we identified the predictors of health-related quality of life (HRQOL) by considering the caregiver’s characteristics such as mental health and parenting stress in addition to child characteristics in preschool children with Autism Spectrum Disorders (ASD). The second study was to examine the relationships among child- and family-related factors, environmental factors, and family quality of life (FQOL) in terms of family system perspective in families of preschool children with ASD using structural equation modeling (SEM). A total of 106 children aged 36 to 70 months participated in the first study. In the second study, most respondents of 106 families were biological mothers and ranged in age from 24 to 46 years. The first study indicated that the predictors of HRQOL in children with ASD encompassed not only child but also caregiver characteristics. In particular, good HRQOL in the domains of social and emotional functioning in children with ASD depended upon the caregiver’s mental well-being. In the second study, it showed that parent’s socioeconomic status (SES), behavioral problems, and the total hours per week that child receives therapy services have direct effects on FQOL. In summary, our findings highlight the need for assessment of caregivers’ parenting stress and their mental status as well as the predictors of HRQOL in children with ASD. Furthermore, results of the study could serve as a guide for clinicians to target the predictors when providing assessment and intervention for children with ASD to improve their HRQOL and for policy makers to target these factors when setting policies and providing services to better support families having children with ASD. In addition, results suggest that the government not only should take SES account into policy development for families whose children receive special services but also provide adequate professional service hours and appropriate resources that meet the parents’ needs. Finally, the results of the studies could assist clinicians in constructing family-based intervention programs to better serve children and families with ASD.Contents 誌謝……………………………………………………………………...........................1 Abstract…………………………………………………………………………………..2 中文摘要………………………………………………………………………………...4 Chapter 1 Introduction ......................................................................................................5 1.1 Background ……………………………………………………………………….5 1.2 Purpose of the dissertation…………………………………………………….......8 1.3 Significance of the study………………………………………………………….8 Chapter 2. Literature review……………………………………………………………10 2.1 Autism spectrum disorder……………………………………………………….10 2.2 Health-related quality of Life……………………………………………………10 2.2.1 Introduction to HRQOL……………………………………………………...10 2.2.2 HRQOL of children with ASD……………………………………………….12 2.2.3 Factors of HRQOL in children with ASD……………………………………14 2.2.4 Limitation of the previous studies....................................................................18 2.3 Family quality of life…………………………………………………………….20 2.3.1 Introduction to FQOL………………………………………………………...20 2.3.2 FQOL of children with disabilities…………………………………………...21 2.3.3 Family system theory…………………………………………………………22 2.3.4 The relationship between family system theory and FQOL………………….22 2.3.5 FQOL of children with ASD…………………………………………………23 2.3.6 Factors influencing FQOL of families of children with ASD………………..25 2.3.7 Limitation of the previous studies....................................................................29 Chapter 3 Study1 3.1 Methods.…………………………………………………………………………31 3.1.1 Participants…………………………………………………………………..31 3.1.2 Instruments…………………………………………………………………..31 3.1.2.1 HRQOL measure……………………………………………………….31 3.1.2.2 Child characteristics……………………………………………………32 3.1.2.3 Caregiver characteristics………………………………………………..35 3.1.3 Procedure…………………………………………………………………….36 3.1.4 Statistical analysis ..........................................................................................37 3.2 Results.………………………………………………………………………….37 3.2.1 Descriptive characteristics of children with ASD…………………………...37 3.2.2 Predictors of physical functioning domain of HRQOL……………………...38 3.2.3 Predictors of social functioning domain of HRQOL………………………...38 3.2.4 Predictors of cognitive functioning domain of HRQOL…………………….39 3.2.5 Predictors of emotional functioning domain of HRQOL……………………39 3.3 Discussion.………………………………………………………………………40 3.3.1Child characteristics..…………………………………………………………40 3.3.2 Caregiver characteristics……………………………………………………..43 3.3.3 Limitations…………………………………………………………………...44 Chapter 4 Study 2 4.1 Methods…………………………………………………………………………45 4.1.1 Participants…………………………………………………………………..45 4.1.2 Instruments…………………………………………………………………..45 4.1.2.1 FQOL measure…………………………………………………………45 4.1.2.2 Child -related factors…………………………………………………...46 4.1.2.3 Family-related factors………………………………………………….47 4.1.2.4 Environmental factors………………………………………………….47 4.1.3 Procedure……………………………………………………………………47 4.1.4 Statistical analysis ..........................................................................................48 4.2. Results………………………………………………………………………….50 4.2.1 Descriptive characteristics of families with children with ASD…………….50 4.2.2 Model of the relationships among child- and family-related factors, environmental factors, and FQOL in families with children with ASD…… 50 4.3 Discussions……………………………………………………………………...53 4.3.1 Child -related factors..……………………………………………………….54 4.3.2 Family-related factors………………………………………………………..55 4.3.3 Environmental factors……………………………………………………….55 4.3.4 Clinical implications………………………………………………………...57 4.3.5 Limitations…………………………………………………………………..59 Chapter 5 Conclusions…………………………………………………………………60 References……………………………………………………………………………...62 List of Tables Table 1. Descriptive statistics of demographic variables, and independent variables in children with ASD…………………………………………………………….81 Table 2. Stepwise linear regression models of four domains of quality of life assessed by the TNO-AZL Preschool children Quality of Life (TAPQOL) in children with ASD…………………………………………………………………………...83 Table 3. Measures of factors influencing FQOL in families of children with ASD……84 Table 4. Descriptive statistics of demographic variables and characteristics of factors influencing FQOL in families with ASD……………………………………..85 Table 5. Exploratory factor analysis of the FQOLQ- YCSN…………………………..86 Table 6. The measurement model………………………………………………………88 List of Figures Figure 1. The family systems perspective……………………………………………...89 Figure 2. Conceptual model of the relationships among child- and family-related factors, environmental factors, and FQOL…………………………………………..90 Figure 3.The hypothesized model of the relationships among child- and family-related factors, environmental factors, and FQOL……………………………………91 Figure 4.The final model of the relationships among child- and family-related factors, environmental factors, and FQOL…………………………………………….92582218 bytesapplication/pdf論文使用權限:同意有償授權(權利金給回饋學校)健康相關生活品質家庭生活品質預測因子親職壓力學齡前泛自閉症孩童[SDGs]SDG3學齡前泛自閉症孩童健康相關生活品質及其家庭之生活品質預測因子Predictors of the health-related quality of life and family quality of life in preschool children with Autism Spectrum Disorders and familiesthesishttp://ntur.lib.ntu.edu.tw/bitstream/246246/264406/1/ntu-103-D96429002-1.pdf