自閉症青年及成人家庭生活品質及相關因素之初探

Abstract

前言：能擁有好的生活品質，才達到真正的健康狀態。而自閉症青年及成人之獨立性較低，多需依賴家庭的支持，因而會影響了整體家庭的生活品質，於是認為在提供自閉症者服務時，應該需將家庭成員需求一併考量，如此一來，才能提供全面性且符合其需求的服務。 研究目的：呈現目前自閉症青年及成人的家庭生活品質概況，並找出影響自閉症家庭生活品質的重要因子，提供專業人員服務時的參考依據，並提升服務的品質及效率，並降低家屬照顧負擔。 研究方法：本研究透過自閉症家長協會徵召有意願之受試者，以自填問卷方式收集家庭成員、自閉症者社會人口學和疾病相關資訊，及整體家庭生活品質概況，並使用 SPSS 程式 19 版本進行描述性統計、Pearson 相關分析、單變量分析及逐步多元迴歸分析。 研究結果：總共徵召了 60 位 15 歲以上自閉症者的家長做為受試者。在家庭生活品質分數及滿意度上，「家庭關係」項目分數皆最高，「社區及公民參與」項目皆最低。相關性分析中，與家庭生活品質有顯著相關的變項為：「父母教育程度」、「日間活動為日間機構者」、「能分享心情聊天人數(家人除外)」及「語言溝通理解能力」；而與家庭生活品質滿意度有顯著相關的變項為：「家庭成員數」、「養育子女數」、「日間活動為就業者」及「問題行為分數」。在單變量分析中，僅「能分享心情聊天人數(家人除外)」不同者，家庭生活品質分數有顯著之不同；而「養育子女數」、「家庭成員數」及「問題行為分數」不同者，則其家庭生活品質滿意度有顯著之不同。最後在逐步多元迴歸中，家庭生活品質的重要預測因子為「家庭總收入」、「是否同住」、「接受服務及教育年數」及「語言溝通理解能力」；而家庭生活品質滿意度的重要預測因子則為「養育子女數」、「接受服務及教育年數」及「問題行為分數」。 結論與建議：本次研究中的自閉症家庭整體生活品質及滿意度偏低。可由此次研究發現之相關因子著手來改善其家庭生活品質，建議有關單位可以多提供相關專業服務資源及自閉症工作薪資補助；而專業人員則可以盡可能地長時間地追蹤自閉症者的情況、提供其與家庭成員持續的關心，並可試著在早期介入時納入家屬一同指導。

Introduction：It cannot get true health without good quality ogf life (QOL). Autistic people are so dependent that they need to live with families’ support, and affect the QOL of their families. Therefore, to provide thorough and tailor-made services, professionals need to take the families into consideration. Objective：The purpose of this study was to present general family quality of life (FQOL) situation in youths and adults with autism, and to find out the significant factors that influenced it. This would provide the guiding reference to professionals, improve the quality and efficiency of services, and relieve the care burden of their families. Methods：The participants were recruited through Taipei Parents Association of Autism. In addition to socio-demographic and disorder-related information about youths and adults with autism, we also collected their families and their complete FQOL situation. Then, we analyzed the data by descriptive statistics, Pearson correlation analysis, univariate analysis and multiple stepwise regression analysis through IBM SPSS Statistics 19 Results：Sixty parents of youths and adults with autism were included in this study. On the sum from score and satisfaction of FQOL, “Family relations” was the highest item and “Community and civic involvement” was the lowest item. Pearson correlation demonstrated the score of FQOL was significantly correlated with “Parents’education”, “Daily activities：Day care center”, “The number of confidant (except families)”, and “Verbal communication and comprehension ability”； Satisfaction of FQOL was significantly correlated with “The number of families”,“The number of dependent children”, “Daily activities：Employment”, and “The score of behavior problems”. By univariate analysis, “The number of confidant (except families)” was significantly different to the score of FQOL；“The number of families”, “The number of dependent children”, and “The score of behavior problems” were significantly different to satisfaction of FQOL. The last, by multiple stepwise logistic regression, the strongest predictors on score of FQOL were “Family income”, “Living with youths and adults with autism or not”, “Length of time on receiving professional service and education”, and “Verbal communication and comprehension ability”；the strongest predictors on satisfaction of FQOL were “The number of depedent children”, “Length of time on receiving professional service and education”, and “The score of behavior problems”. Conclusion：The score and satisfaction of FQOL in youths and adults with autism in this study were slightly low. We could improve their FQOL in accordance with the found related factors in this study. We suggest that the related administration offer as more as possible professional resources of salary subsidy to youths and adults with autism；Professionals can follow the condition of youths and adults with autism as long as possible, provide ongoing attention to them and their families, and try to include their parents in early intervention.