影響泛自閉症兒童家庭參與及遊戲之相關因子

Abstract

研究背景：泛自閉症光譜疾患 (Autism Spectrum Disorders, ASD)的主要特徵為社交及溝通上質的異常、局限性的興趣及高度重複性的行為。除以上核心症狀外，ASD兒童經常出現動作技巧及感覺處理功能的障礙，這些障礙亦會嚴重影響ASD兒童的家庭參與及遊戲。由於ASD兒童功能及障礙的複雜性，因此使用一個理論架構來幫助我們完整確認影響ASD兒童家庭參與及遊戲的影響因子是極為重要的。世界衛生組織 (World Health Organization, WHO)於2007年倡導使用「國際功能、失能與健康分類系統-兒童青少年版」(International Classification of Functioning, Disability and Health for Children and Youth, ICF-CY)的理論架構及專門術語來描述兒童健康及健康相關的狀態。ICF-CY是目前國際上最被推薦且包含面向最完整的理論架構，ICF-CY強調人類的功能，而非著眼於障礙，它說明疾病、功能、個人與環境間互動的關係。目前探討影響ASD兒童家庭參與及遊戲技巧相關因子的研究並未全面性地探討有關健康狀況、身體功能及構造、活動、個人及環境因素，而僅探討其中一至兩個面向的相關因素。探討影響ASD兒童玩興相關因子的研究則付之闕如。此外，之前研究樣本診斷的異質性較高，樣本的年齡範圍較廣，由嬰幼兒至青少年甚至成人。因此，本研究的個案將針對學齡前的ASD，且將ASD次分類當作分析時的獨立變項之一。 研究目的：本研究的目的為依據ICF-CY架構，探討影響學齡前ASD兒童在溝通、日常生活技巧、社會化、動作技巧等方面之家庭參與、遊戲技巧及玩興的影響因子，其影響因子包括ICF-CY中健康狀態、身體功能與構造、活動、參與、個人因素及環境因素。 研究方法：研究樣本為93名 (平均年齡54.15個月)，來自大台北及桃園地區的幼稚園、兒童復健科診所、發展中心、醫院之復健科或兒童精神科的ASD兒童。納入條件包括：(1) 兒童被兒童精神科醫師依據DSM-IV-TR診斷為自閉症(autistic disorder)、亞斯伯格症(Asperger disorder)或待分類的廣泛性發展障礙(Pervasive Developmental Disorder Not Otherwise Specified, PDD-NOS)；(2) 兒童年齡為3歲0個月至5歲11個月31天；(3) 兒童的家長或主要照顧者同意兒童參與此研究並簽屬同意書。排除條件包括：(1) 兒童有感覺功能的障礙，如視障或聽障，或兒童有嚴重的動作障礙會影響接受施測；(2) 兒童的主要照顧者無法以中文或台語溝通。符合收案標準且家長簽屬同意書的兒童將接受研究者一對一施測中文兒童心理教育量表-第三版 (Chinese Psychoeducational Profile- third edition, CPEP-3)。接受CPEP-3施測後，兒童將與研究人員或手足進行15至20分鐘的自由遊戲，另一名研究者將觀察兒童評估及自由遊戲時之表現並使用兒童自閉症評量表 (Childhood Autism Rating Scale, CARS)、兒童意志量表及玩興測驗 (Test of Playfulness, ToP)計分。同時，第三位研究者將使用中文版文蘭適應行為量表 (Vineland Adaptive Behavior Scale, VABS)訪談兒童之主要照顧者。所有評估及訪談結束後，將請主要照顧者填寫問卷，包括基本資料表、兒童行為調查問卷 (Child Behavior Checklist/1.5-5, CBCL/1.5-5)、中文版兒童氣質量表 (Behavior Style Questionnaire- Chinese, BSQ-C)、感覺處理能力剖析量表-簡短版 (Short Sensory Profile, SSP)、親職壓力量表-中文簡短版 (Parenting Stress Index- Chinese Short Form, PSI-CSF)、正向情緒指數 (Positive Affect Index)及特殊兒童家庭生活品質問卷 (Family Quality of Life Questionnaire for Young Child with Special Needs, FQoLQ-YCSN)，並請家長於兩周後將問卷寄回。 資料分析：針對兒童健康狀態、身體功能及構造、活動及參與、個人、環境因素等變項進行描述性統計及皮爾森相關 (Pearson Product Moment Correlation)分析。使用多重線性迴歸模式 (multiple linear regression models)探討影響學齡前ASD兒童家庭參與、遊戲技巧及玩興的相關因子，依變項分別包括VABS-C溝通、日常生活技巧、社會化、動作技巧領域、VABS-C遊戲及休閒次領域及ToP分數，獨立變項包括所觀察到ICF-CY中兒童健康狀態、身體功能及構造、活動及參與、個人及環境因素等變項。 結果：多重線性迴歸模式分析結果顯示，CPEP-3語言表達 (β=1.16, p<0.001)、SSP-C聽覺篩選 (β=1.36, p<0.001)、SSP-C不反應/尋求感覺刺激 (β=-1.02, p=0.009)、孩童的年齡(β=-0.62, p=0.001)及家中孩童的數目 (β=-4.67, p=0.038)是孩童溝通方面家庭參與 (VABS-C Communication)的預測因子，此模式可解釋60.3%的變異量。孩童PVQ-C (β=0.75, p<0.001)、SSP-C聽覺篩選 (β=1.05, p=0.002)、SSP-C不反應/尋求感覺刺激 (β=-0.94, p=0.005) 是日常生活技巧方面家庭參與 (VABS-C Daily Living Skills)的預測因子，且此模式可解釋32.4%的變異量。孩童的PEP-3情感表達 (β=1.18, p<0.001)、SSP-C聽覺篩選 (β=1.04, p<0.001)、BSQ-C堅持度 (β=0.57, p=0.013)、BSQ-C趨避性 (β=0.49, p=0.011)及家長社經地位為最低等級 (β=-14.00, p=0.048)是孩童社會化方面家庭參與 (VABS-C Socialization)的預測因子，且此模式可解釋47.5%的變異量。孩童的CPEP-3精細動作 (β=1.86, p<0.001)、BSQ-C情緒本質 (β=-1.15, p=0.003)、 BSQ-C適應度 (β=0.71, p=0.005)、孩童的年齡(β=-0.86, p<0.001)及是否有癲癇 (β=-18.68, p=0.031)皆是動作技巧方面家庭參與(VABS-C Motor Skills)的預測因子，且此模式可解釋39.5%的變異量。此外，孩童的CPEP-3認知口語表達 (β=0.15, p<0.001)、VABS-C日常生活技巧領域 (β=0.08, p=0.007)、BSQ-C堅持度 (β=0.18, p=0.016)及家長的PSI (β=-0.09, p=0.005)為孩童遊戲技巧 (VABS-C Play and Leisure Time)的預測因子，且此模式可解釋56.2%的變異量。孩童的CARS (β=-0.08, p<0.001)、PVQ-C (β=0.03, p=0.001)、VABS-C溝通領域 (β=0.01, p=0.006)、孩童年齡 (β=0.02, p=0.002)及家長社經地位為中低等級 (β=0.34, p=0.030)皆為玩興 (ToP)的預測因子，且此本模式可解釋80.5%的變異量。 結論：本研究為第一個依據ICF-CY架構，探討影響學齡前ASD兒童在溝通、日常生活技巧、社會化、動作技巧等方面之家庭參與、遊戲技巧及玩興的預測因子，其預測因子包括ICF-CY中健康狀態、身體功能與構造、活動、參與、個人因素及環境因素。本研究的結果可瞭解影響學齡前ASD兒童家庭參與、遊戲技巧及玩興的預測因子，且可協助臨床專業人員針對此預測因子訂定有效的治療目標及治療計畫，並可作為政府制定施政方針的參考。

Background: Autism Spectrum Disorders (ASD) is characterized by qualitative impairments in communication and social interaction, along with restricted interests and repetitive behaviors. Besides the core symptoms, children with ASD often have various co-occurring problems such as deficits in motor skill and sensory processing, which may greatly hamper their participation and play skill acquisition. Participation in everyday occupations is essential to a child’s development, health, and well-being. Preschoolers’ participation mainly involves home situations. In addition, play is one of preschoolers’ primary occupations, through which they learn skills and develop competence. Because of the complex nature of problems in children with ASD, it is essential to use a framework to identify children’s functioning and disability from a holistic perspective and to examine the environmental barriers or facilitators to child’s functioning. The World Health Organization (WHO) advocates an uniform framework and terminology, the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY), for the description of health and health-related states. The ICF-CY is a holistic conceptual framework that not only focuses on disability but also on function and takes into account the interrelations of disease, function, person, and environment. To date, studies examining the factors influencing home participation and play skill acquisition in children with ASD only included factors from one to three specific dimensions of the ICF-CY without considering possible factors from all dimensions of the health condition, body function and structures, activities, person and environments simultaneously. In addition, no studies examined the playfulness and the predictors of playfulness in children with ASD. Thus, a study using the ICF-CY framework to investigate the predictors of home participation, play skills and playfulness in children with ASD is warranted. Moreover, the diagnosis subtypes of the participants in the previous studies were not considered, and the age of the participants expanded across a wide range, from preschoolers to adolescents. Therefore, this study was aimed at children with ASD at preschool age, and the subtypes of ASD were taken into account in data analysis. Purposes: The purpose of this study was to investigate the factors influencing home participation in life situations involving communication, daily living activities, socialization, motor activities, along with play skills and playfulness in preschoolers with ASD. Furthermore, possible factors from the entire scope of the ICF-CY, i.e., the dimensions of health condition, body function and structures, activities and participation, person and environments were taken into account. Method: A total of 93 preschoolers with ASD (mean age= 54.15 months) recruited from developmental centers, pediatric rehabilitation clinics, and child psychiatry and rehabilitation departments of general hospitals in the greater Taipei area and Taoyuan city participated in this study. The inclusion criteria included: (1) children were diagnosed with autistic disorder, Asperger disorder, or PDD-NOS by child psychiatrists based on the criteria in the DSM-IV-TR, (2) children’s age was 3- to 5- year-old, and (3) children’s parents or primary caregivers agreed to participate and provided the informed consent. Furthermore, children who had sensory or severe motor limitations or whose primary caregivers could not communicate in Mandarin or Taiwanese were excluded. The child with parental informed consent received a one-to-one assessment using the Chinese Psychoeducational Profile-third edition (CPEP-3). At the same time, another researcher rated the child’s behaviors using the Childhood Autism Rating Scale (CARS) and the Pediatric Volitional Questionnaire-Chinese version (PVQ-C). Meanwhile, the parent or primary caregiver was interviewed by a third researcher using the Vineland Adaptive Behavior Scale-Chinese classroom edition (VABS-C). After completing the CPEP-3, the child was observed both in free play by herself/himself and played with one researcher or the child’s sibling for 15 to 20 minutes. Meanwhile, another researcher observed the child’s playfulness using the Test of Playfulness (ToP). Afterwards, a package of questionnaires including a basic information questionnaire, the Child Behavior Checklist for Ages 1.5-5-Chinese version (CBCL-C/1.5-5), the Behavior Style Questionnaire-Chinese version (BSQ-C), the Short Sensory Profile-Chinese version (SSP-C), the Parenting Stress Index-Chinese Short Form (PSI-CSF), the Positive Affect Index (PAI) and the Family Quality of Life Questionnaire for Young Children with Special Needs (FQoLQ-YCSN) was given to parents who were asked to return questionnaires in two weeks. Statistical analysis: Descriptive analysis and Pearson Product Moment Correlation analysis were performed for the observed variables in health condition, body function and structures, activity and participation, environmental and personal dimensions of the ICF-CY. Multiple linear regression models were fitted to identify the significant predictors of home participation, play skills and playfulness in children with ASD. The dependent variables included the Communication, Daily Living Skills, Socialization and Motor Skills domains, and the Play and Leisure Time subdomain of the VABS-C as well as the ToP. The independent variables included all the observed variables in health condition, body function and structures, activity and participation, environmental and personal dimensions of the ICF-CY. Results: Multiple stepwise linear regression models revealed that the CPEP-3 Expressive Language (β=1.16, p<0.001), SSP-C Auditory Filtering (β=1.36, p<0.001) and Underresponsive/Seeks Sensation (β=-1.02, p=0.009), children’s age (β=-0.62, p=0.001) and the number of children in the family (β=-4.67, p=0.038) were the significant predictors of home participation in communication (VABS-C Communication) in preschoolers with ASD. The model accounted for 60.3% of the variance. Children’s PVQ-C (β=0.75, p<0.001), SSP-C Auditory Filtering (β=1.05, p=0.002) and Underresponsive/Seek Sensation (β=-0.94, p=0.005) were the significant predictors of their participation in daily living activities (VABS-C Daily Living Skills). The model explained 32.4% of the variance. Children’s CPEP-3 Affective Expression (β=1.18, p<0.001), SSP-C Auditory Filtering (β=1.04, p<0.001), BSQ-C Persistence (β=0.57, p=0.013) and Approachability (β=0.49, p=0.011) and their parental socioeconomic status in lower class (β=-14.00, p=0.048) were the significant predictors of their participation in socialization (VABS-C Socialization). The model accounted for 47.5% of the variance. Children’s CPEP-3 Fine Motor (β=1.86, p<0.001), BSQ-C Mood (β=-1.15, p=0.003) and Adaptability (β=0.71, p=0.005), children’s age (β=-0.86, p<0.001) and having seizure (β=-18.68, p=0.031) were the significant predictors of their participation in motor activities (VABS-C Motor Skills). The model explained 39.5% of the variance. With regard to play skills (VABS-C Play and Leisure Time), children’s CPEP-3 Cognitive Verbal/ Preverbal (β=0.15, p<0.001), VABS-C Daily Living Skills (β=0.08, p=0.007), BSQ-C Persistence (β=0.18, p=0.016), and parental PSI (β=-0.09, p=0.005) were the significant predictors. The model accounted for 56.2% of the variance. Children’s CARS (β=-0.08, p<0.001), PVQ-C (β=0.03, p=0.001), VABS-C Communication (β=0.01, p=0.006), children’s age (β=0.02, p=0.002) and their parental socioeconomic status in lower middle class (β=0.34, p=0.030) were the significant predictors of their playfulness (ToP). The model explained 80.5% of the variance. Conclusions: This study is the first one to examine the factors influencing home participation in life situations involving communication, daily living activities, socialization, motor activities, as well as play skills and playfulness in preschoolers with ASD using the ICF-CY framework by considering the possible factors from all dimensions of the ICF-CY. Results of this study can benefit professionals when setting appropriate treatment goals and designing effective interventions, and serves as a guide for the government to make appropriate policies for preschool children with ASD.