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題名：臺灣地區發展遲緩兒童家庭生活品質之研究
作者：唐紀絜 引用關係
作者(外文)：Chi-Chieh Tang
校院名稱：國立彰化師範大學
系所名稱：特殊教育學系所
指導教授：林宏熾
林金定
學位類別：博士
出版日期：2005
主題關鍵詞：發展遲緩兒童；家庭生活品質；線性結構方程式模式；紮根理論；young children with developmental delay；family quality of life；structural equation model；grounded theory
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本研究主要的目的是以「家庭系統理論」為基礎，瞭解臺灣地區發展遲緩兒童家庭生活衝擊、家庭因應型態、及家庭生活品質因果模式及影響因素，並應用質量性研究結果探討遲緩兒童「家庭生活品質理論模式」之內涵。研究者不僅只限於家庭生活品質影響因素之探討，且更關心家庭生活品質現象中，在所處的脈絡情境下所呈現的類組、次類組、與概念彼此間的交互作月及交叉檢核後的核心變項。因此本研究在家庭生活品質的測量範疇下發展所須的測量工具(特幼兒家庭生活品質問卷；Family Quality of Life Questionnaire for Young Children with Special Needs, FQoLQ-YCSN)，以臺灣地區27個早療個管中心415位遲緩兒家長進行問卷調查，問卷量性資料以t考驗、單因子變異數分析、積差相關、典型相關分析、及逐步迴歸分析等統計方法進行分析，並對所提出變項間的結構模式應用線性結構方程統計軟體(AMOS 5.0)做整體分析；應用量性研究結果進行12位遲緩兒家長、6位社工/教保人員、及5位早療機構主管質性深度訪談，應用理論飽合之持續性比較性內容分析方法探討家庭生活品質之類組脈絡與核心變項之關係。研究結果如下：
1. 發展遲緩兒童「家庭生活品質」、「家庭因應型態」、與「家庭生活品質」三份工具有良好信效度及臺灣地區遲緩兒家庭生活品質現況是為近於尚佳狀態。其中：(1)家庭生活衝擊量表分為四項主要的生活衝擊，即：家庭每日生活常規、家庭情感溝通及問題解決、家庭互動與社交生活、及家庭成長與生涯發展等四個因素等項目，其解釋變異量為82.02%，以「家庭成長與生涯發展之衝擊」為最大；(2)家庭因應型態量表分為三個因素向度，是為：逃避導向：維持自尊及心理穩定、認知導向：家庭整合與樂觀詮釋、及工作導向：早療專業諮詢與支持等三個因素。其解釋變異量為76.43%，以「家庭整合與樂觀詮釋：認知導向」之因應型態有效性最高；(3)家庭生活品質量表分為六個因素向度，是為：家庭互動與心理福祉、家庭健康與經濟福祉、生態環境與安全、家庭產能與自我決策、家庭社會福祉、及家庭生活常規福祉等六個因素，其解釋變異量為88.38%，以「社會福祉」之生活品質的得分最高，其內涵是為普通生活品質至尚佳的生活品質。
2. 發展遲緩兒童「整體家庭生活衝擊」的影響因素，包括：家庭經濟收支狀況、照顧者家庭責任、遲緩兒照護責任、遲緩兒障礙程度、時托療育服務、融合班療育服務、社會福利補助、及身心障礙手冊等變項；「整體家庭因應型態」的影響因素：家長性別、家長教育程度、家庭型態、家庭收入、家庭經濟收支狀況、家庭支持網路、家庭責任、遲緩兒障礙程度、時托療育服務等變項；家長婚姻關係、家長職業、家庭型態、家庭收入、家庭經濟收支狀況、核心家人同住狀況、家庭支持網路、家庭責任、特幼兒照護責任、遲緩兒年齡及障礙程度、療育服務型態中日托、時托、與學前特教療育服務、及身心障礙手冊等變項是為「整體家庭生活品質」之影響因素。
3. 發展遲緩兒家庭生活衝擊與家庭因應型態、家庭因應型態與家庭生活品質、及家庭生活衝擊與家庭生活品質之間存在著典型關係，其解釋變異量各為7.84%、25.0%、及31.6%。
4. 家庭收入、家長家庭責任、家庭情感溝通衝擊、整體家庭生活衝擊、及整體家庭因應等變項能有效的預測「家庭生活品質」，解釋變異量為51.4%；其中遲緩兒年齡、中低收入戶補助、同住一屋家人數、及日托早療服務方案等四個變項是為「整體家庭生活衝擊」之預測因子(解釋變異量28.4%)，家長年齡、家庭互動及社交生活之衝擊、融合早療方案、及其他福利之補助等四個變項是為「整體家庭因應型態」之預測因子(解釋變異量14.5%)。
5. 以基本的適配標準、整體模式適配度、及內在結構適配度等三項評鑑標準檢測發展遲緩兒童「家庭生活品質線性結構模式」，其適配性評鑑結果大致尚佳。「家庭生活衝擊」或「家庭因應型態」對「家庭生活品質」有較強且顯著的直接效果存在，「家庭生活衝擊」透過「家庭因應型態」對「家庭生活品質」之整體效果是為-.56。
6. 遲緩兒家庭生活品質理論模式之核心變項是為「活化家庭賦權」。其中(1)保留生活的主動性、家庭擁護需求、人際溝通、及家庭生活信念及價值觀等次類組所構成的「持續生活的常態性」類組；(2)家庭覺知、環境安全、滿足家庭需求、維持早療服務等次類組所構成的「促進家庭效能」類組；(3)家庭自我決策、家庭歸屬感、學校-家庭合作的伙伴關係、及家庭自我價值等次類組所構成的「促進家庭心理福祉」類組；三項概念類組經過交叉檢核後所得的核心變項是為「活化家庭賦權」。
根據研究的發現與結果，分別就遲緩兒家庭危險因子之評估與確認、以家庭為中心之早療服務方案之規劃、遲緩兒「家庭生活品質量表」列入早期療育服務方案評鑑指標等遲緩兒童早期療育實務實用性，早療專業人員培育的實用性，及進一步研究提出適當的建議。
The aims of the study were both to examine the relationship among family life impacts, family coping strategy, and family quality of life (FQoL) of the young children with developmental disabilities (DD), and to identify and explore the core variable in the family adaptive process. Utilizing “theories of family system and coping” as the basic theoretical framework, a quantitative and grounded theory approach was used to develop a theoretical model to be applied to the improvement of family quality of life in the young children with special needs.
The methodology and design of the data collection had two parts. First was a quantitative validly and reliable questionnaire to obtain the relevant demographic information, perception of family impact, coping strategies, and family quality of life whose family have the young children with D.D. Second was the use of interview and narrative methods to elicit the options and experience of all participants. The quantitative sample was consisted of 415 parents or grandparents, and the qualitative sample was consisted of 12 parents, 5 caregivers, 1 social worker, and 5 directors of institute of early intervention were interviewed. Eight hypotheses were tested for the causal model of family life impacts, family coping strategies, and family QoL. The test instruments well developed by validities and reliability. The quantitative data obtained were statistically analysised by factor analysis, multivariate analysis of variance (MANOVA), Pearson’s correlation, canonical correlation, stepwise regression, and structural equation model; the qualitative data were analyzed by constant comparative method to identify concepts, subcategories, categories, and finally the core variable.
The major findings of this study were as follows:
1.Family life impacts can be classified into four dimensions: Family daily routine impact, Family emotion & problem solving impact, Family interaction & social impact, and Family self-development & career impact. The most impact factor was Family self-development & career. A significant difference on total family life impact was found among the family financial status, parent’s burden for maintaining family function, severity of disabilities, hour and inclusive early intervention, welfare, and credit for disability. The predictors of family life impact were the welfare of low income, persons of family, day care service of early intervention, and age of child.
2.Family coping strategies can be classified into three dimensions: escaping, cognitive, and action. The most effective coping factor was cognitive strategies. A significant difference on total family coping strategies was found among the sex and education level of parent, family type and income, social support network, severity of disabilities, burden of care, and hour service. The predictors of family coping strategies were the parent’s age, inclusive early intervention, and others welfare.
3.Family QoL can be classified into six dimensions: Family interaction & emotional, family health & financial, environmental & safety, social, Family daily routine well-being and family productivity & self-determination. The most good family QoL factor was social well-being. A significant difference on total family QoL was found among the parent’s marital status, family type and income, social support network, burden of care , severity of disabilities, hour early intervention, and credit for disability. The predictors of family QoL were the total family life impact, total family coping effectiveness, burn of care, family income and communication.
4.A exploratory factor analysis was used to test the factors influencing family QoL showed stronger and significant direct effects, the fitness of model was fair to good. The core variable was identified as enabling empowerment.
This is an exploratory study which is directed towards developing a substantive theory to explain the phenomenon of family QoL. Based on the study’s findings, the implication of early intervention is that further explication of effect of transdiscipline teaming on family group or individualized family service plan to provide comprehensive early intervention to alleviate family life impact. Since this study focused on parents of the children with developmental disabilities, a longitudinal study is needed to follow up the family adaptive process.
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