背景：過去嚴重的先天性心臟病死亡風險相當高，但拜現今手術技術的進步及照護模式的成熟，多數患者得以存活更長的時間，不過也使得先天性心臟病慢慢演變成一種慢性疾病，當慢性病童融入家庭生活時，家庭的管理技巧和成員間的配合會左右家庭整體運作。而青少年階段為認同感發展時期，開始在意同儕的眼光及社會評論，因此家庭管理在此時給予合宜的支持，能提升青少年社會適應及未來的自我照顧能力，但現今之研究較少以家庭管理為方向，去探討其對先天性心臟病術後青少年的影響。
目的：探討家庭管理對先天性心臟病術後青少年生活品質之影響。
方法：本研究採橫斷式、相關性研究設計，以方便取樣13-18歲，診斷先天性心臟病且經歷開心手術之青少年，於台灣某2所醫學中心之心臟內科門診，收案146人，以人口學特徵、家庭管理量表及先天性心臟健康相關生活品質量表收集資料；所得資料以SPSS 24.0套裝軟體進行資料分析，描述性統計採用次數分配、最大值、最小值、百分比、平均數及標準差，而推論性統計則採用t-test、Pearson Correlation、Spearman Correlation及Multiple regression analysis進行分析。
結果：本研究共收案146名先天性心臟病開心術後青少年家庭，其中非發紺型佔67.1%，76%已不需服用藥物，在心臟功能程度上以已恢復正常人數佔63%最多。在家庭管理方面以「父母互相支持狀態」表現最佳（平均分數3.88±標準差0.55分）；而「父母對疾病擔心狀態」則最具有挑戰（平均分數為2.48±標準差0.45分）。生活品質方面則以「治療焦慮程度」表現最佳（平均分數93.8±標準差11.4分）；而以「認知狀態」自覺最低（平均分數71.9±標準差20.5分）。家庭管理中的簡單面向(β=0.167, p<0.05)，包括兒童日常生活狀態、父母疾病管理能力及父母互相支持狀態與挑戰面向(β=-0.183, p<0.05)，包括父母對疾病擔心狀況、父母疾病管理困難狀態及父母疾病精力消耗狀態，皆顯著影響先天性心臟病開心術後青少年的生活品質。而在層級迴歸的模式中控制其疾病診斷、服藥情形、開心次數後之基本資料影響，家庭管理在青少年心臟功能程度與生活品質之間具有部分中介之效果。
結論：整體家庭管理狀態在先天性心臟病青少年心臟功能程度與生活品質之間具有中介效果的影響，縱使是在自主性增加的青少年時期，增進家庭管理的能力，仍有助於提升先天性心臟病青少年之生活品質，建議臨床照護中需針對曾接受開心手術後青少年的日常生活狀態、父母疾病管理能力、互相支持狀態以及對疾病擔心狀況、管理困難狀態與精力消耗狀態等家庭管理層面，提供整體的評估與檢視，本研究結果可做為未來提升先天性心臟病青少年生活品質介入措施之重要參考。

Background: The risk of deaths from serious congenital heart disease in the past was quite high. However, thanks to the advancement of surgical techniques and the maturity of nursing models, most patients now survive longer, but this has also made congenital heart disease slowly evolve into a chronic disease. When chronically ill children are integrated into family life, family management skills and teamwork will influence the overall functioning of the family. The youth stage is a period of development of identity, and children begin to pay attention to the vision and social commentary. Therefore, family management can provide appropriate support at this time, which can improve the social adaptability of young people and their future self-care ability. However, the current research on family management is scarce. Therefore, it is necessary to explore its impact on adolescents with congenital heart disease after corrective surgery.
Purpose: To explore the effect between family management and quality of life of adolescents with congenital heart disease after corrective surgery.
Methods: This study adopted a cross-sectional correlation study design and recruited 13–18-year-old adolescents diagnosed with congenital heart disease and who had experienced open surgery in the medical heart clinics of two medical centers in Taiwan, resulting in a sample of 146 people. Data were collected by demographic characteristics, the family management scale, Pediatric Quality of Life Inventory 3.0 Cardiac Module™. The data were analyzed with the SPSS 24.0 software package, and descriptive statistics using the frequency distribution, maximum, minimum, percentage, average, and standard deviation. Inferential statistics were analyzed using t-test, Pearson correlation, Spearman correlation, and multiple regression analysis.
Results: A total of 146 adolescents with congenital heart disease were enrolled in this study. Among them, non-cyanosis accounted for 67.1%, 76% had no need to take drugs, and 63% had recovered to normal levels. In terms of family management, “Parental mutuality” performed best (Mean=3.88±SD=0.55) and “Condition management effort” was the most challenging (Mean=2.48±SD=0.45). In terms of quality of life, "Treatment anxiety" performed best (Mean=93.8±SD=11.4), while "Cognitive problems" had the lowest score (Mean=71.9±SD=20.5). Easy aspects (β=0.167, p<0.05) in family management, including the “Child's daily life,” “Condition management ability,” and “Parental mutuality,” and Challenging aspects (β=-0.183, p<0.05), including “Condition management effort,” “Family life difficulty,” and “View of condition impact” showed a significant correlation with quality of life. In the pattern of hierarchical regression, the influence of basic data after disease diagnosis, medication, and number of open-heart surgeries was controlled. Family management had a partial mediator between adolescent heart function and quality of life.
Conclusion: The overall family management status had a mediating effect on the degree of cardiac function and quality of life in adolescents with congenital heart disease. Even in adolescents with increased autonomy, the ability to improve family management can still help to enhance their quality of life. Regarding the quality of life of adolescents, it is recommended that clinical care is provided to improve the family management level of daily life status, parental disease management ability, mutual support status, disease worry status, management difficulty status, and energy consumption status of adolescents who have undergone heart surgery. The results of this study can serve as an important reference for future intervention measures to improve the quality of life of adolescents with congenital heart disease.

致謝...................................................................................i
中文摘要...............................................................................ii
英文摘要...............................................................................iv
第壹章、緒論...........................................................................1
第一節、研究背景及動機.................................................................1
第二節、研究目的.......................................................................3
第三節、研究問題.......................................................................4
第四節、研究假設.......................................................................5
第貳章、文獻查證.......................................................................6
第一節、先天性心臟病概述與分類.........................................................6
第二節、先天性心臟病之治療及照護.......................................................10
第三節、先天性心臟病術後青少年的家庭管理...............................................13
第四節、先天性心臟病術後青少年的生活品質...............................................22
第參章、研究方法.......................................................................37
第一節、名詞解釋.......................................................................38
第二節、研究設計.......................................................................41
第三節、研究對象.......................................................................42
第四節、研究工具.......................................................................43
第五節、研究倫理考量...................................................................47
第六節、資料收集過程...................................................................48
第七節、統計方法.......................................................................49
第肆章、研究結果.......................................................................53
第一節、研究對象基本屬性結果...........................................................54
第二節、先天性心臟病開心術後青少年家庭管理及生活品質的分布情形.........................59
第三節、研究對象之基本屬性在家庭管理及生活品質上是否有差異.............................73
第四節、先天性心臟病開心術後青少年及其家屬之基本屬性、家庭管理及生活品質之相關性.......82
第五節、先天性心臟病開心術後青少年之生活品質之重要預測因子.............................94
第伍章、討論...........................................................................99
第一節、開心術後青少年及其家屬之人口學特性、家庭管理及生活品質之現況分析...............100
第二節、開心術後青少年及家屬基本屬性、家庭管理及生活品質之關係.........................102
第三節、先天性心臟病開心術後青少年生活品質之重要預測因子...............................104
第陸章、結論與建議.....................................................................106
第一章、結論...........................................................................106
第二章、研究限制.......................................................................108
第三章、建議與應用.....................................................................109
第柒章、參考文獻.......................................................................111
附錄...................................................................................125

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