先天性心臟病青少年自我照顧、自我效能與生活品質研究

背景：隨著先天性心臟病患者年齡的成長，在青少年這階段會面臨的重要問題是患者將從被照顧者轉變成照顧者的角色，並學習自我照顧的能力。現今先天性心臟病因醫療科技進步，使得先天性心臟病患者存活率大幅提升，然而大部分的患者並非完全治癒，且他們需要長期追蹤，因此疾病對於其生活品質之影響也是重要的一部分。目的：本研究欲探討先天性心臟病青少年之個人特性、臨床特性、行為特、家庭因素對自我照顧能力的影響。先天性心臟病青少年之家庭因素對行為特性的影響以及先天性心臟病青少年之自我照顧能力對生活品質的影響。方法：採回溯性研究，便利取樣法13-30歲之先天性心臟病青少年患者為研究對象，自2017年7月7日至2018年3月21日於高雄某醫學中心之兒科心臟內科門診進行，以結構式問卷進行資料收集，發放200份問卷，共回收150份有效問卷，回收率為75%。資料內容以SPSS 20套裝軟體進行資料的描述性統計及推論性統計分析。結果：本研究男女比例為6：5，平均年齡為18.6歲，有37.3%的患者為大學學歷，有6成的患者沒有商業保險，有54.7%的患者沒有做過手術，近5成的患者不清楚自己的心臟病類型，有6成患者的心臟功能分級為第一級。研究結果顯示有做過手術的先天性心臟病患者的自我照顧能力明顯高於未做過手術者，而先天性心臟病患者的自我效能越高，其自我照顧能力也越高，且患者感受家庭支持度越高，自我照顧能力越高。另外，先天性心臟病患者感受家庭支持度越高，較不易得憂鬱症，而患者感受家庭支持度越高，其自我效能也越高；父親過度保護越高，患者較不易得憂鬱症，母親關懷越高，患者的自我效能也越高。而先天性心臟病患者的自我照顧能力與生活品質呈現負相關。結論與建議：應加強先天性心臟病患者本身對於自己疾病的認識和了解，並教導有關自我照顧的技能以提升自我照顧能力，及建議可加以探討先天性心臟病患者的父母親在患者的自我照顧能力上所扮演的角色。

關鍵字

先天性心臟病；自我照顧；自我效能；生活品質

並列摘要

Background: with the growing age of congenital heart disease patients, an important issue in adolescence is the transformation of patients from whom are cared to careers and the ability to learn self- care. Nowadays, the survival rate of patients with congenital heart disease is greatly improved due to the progress of medical technology. However, most patients are not completely cured and they need to be tracked for a long time, so the impact of the disease on their quality of life is also an important part. Objective: to investigate the effects of personal, clinical, behavioral and familial factors on self-care ability of adolescents with congenital heart disease. The effects of family factors on behavior characteristics and self-care ability on quality of life of adolescents with congenital heart disease. Method: a retrospective study, convenient sampling method, aged 13 to 30 adolescents with congenital heart disease patients as the research object, from July 7, 2017 to 2017 on March 21 in pediatric heart internal medicine clinic for a medical center in Kaohsiung, with structured questionnaires for data collection, to issue 200 questionnaires, were 150 valid questionnaires, the recovery was 75%. Descriptive statistics and inferential statistical analysis were performed with SPSS 20 software package. Results: in this study, the proportion of male and female patients was 6：5, the average age was 18.6 years old, 37.3%of the patients had a college degree, 60%had no commercial insurance, 54.7%had no operation, nearly 50%of the patients did not know their heart disease type, and 60%had a grade 1 heart function. The results showed that the self-care ability of patients with congenital heart disease who had undergone surgery was significantly higher than those who had not undergone surgery. The higher the self-efficacy of patients with congenital heart disease, the higher their self-care ability, and the higher the degree of family support felt by patients, the higher their self-care ability. In addition, the higher the degree of family support experienced by patients with congenital heart disease, the less likely they are to suffer from depression, and the higher the degree of family support experienced by patients, the higher their self-efficacy. The higher the father’s overprotection, the less prone the patient to depression. The higher the mother’s care, and the higher the patient's self-efficacy. The self-care ability of congenital heart disease patients as negatively correlated with the quality of life. Conclusion and suggestion: it is necessary to strengthen the awareness and understanding of congenital heart disease patients themselves, and to teach the skills of self-care to improve their self-care ability.