癲癇青少年生活品質內涵初探: 主觀性生活情境的差異分析

　　　　　本研究為癲癇青少年生活情境研究的一部份，主要針對癲癇青少年的生活情境進 行差異分析。以立意取樣，對於某醫學中心兒童醫院癲癇門診追蹤治療的 13 名個案，根據 訪談指引作面對面的低結構性訪談，訪談的內容以錄音記錄，再逐字抄錄為書面訪談過程， 依 Miles 與 Huberman(1994) 質性研究分析法整理， 並針對個案的主觀性生活品質滿意度 的差異加以分析比較，了解存在個案間主觀性生活情境的差異性。結果顯示，家庭及休閒娛 樂於癲癇青少年主觀性好的生活品質扮演了重要的角色。而家庭關係為每一階段的青少年生 活品質的重要部分。對於青少年晚期而言，擁有獨立自主與休閒娛樂的生活才是好的生活品 質。青少年自覺好的生活品質與不好的生活品質之差異，於個人感受日常生活所限制的多寡 ，而與疾病發作並無直接相關，其中生活的限制與衝突有一部份是來自父母的過度保護與約 束。而能於疾病的限制中發展出個人生活管理措施的青少年，其生活愈不受到疾病所困擾， 生活品質愈趨良好。於臨病上，護理人員應了解家庭關係對癲癇青少年的影響。在疾病穩定 情形下，父母親因鼓勵青少年維持正常的孩童生活形態與同儕互動，鼓勵並支持其參與團體 活動，可以提升其生活滿意度。
　　　　　This study was part of an investigation about life quality of adolescents with epilepsy. The purpos of this study was to analyze the differences in subjective life space of adolescents with epilepsy. A purposive sample consisted of adolescents with epilepsy who were from the pediatric OPD of Children Hospital were interviewed with a semi-structural interview guide. Interviews were tape recorded and transcribed verbatim for data analysis. The method of qualitative dads analysis was adapted from Miles and Huberman (1994) to identify categories. The results indicate that family relations and recreations were important dimensions of quality of life for adolescents with epilepsy. A difference between adolescents who reported having good and those who reported having bad quality of life was found. This difference might due to the limitations of daily activities from the adolescent's perception, rather than epilepsy attack. Limitations of daily activities were partially caused by overprotection and restraint from their parents. Those adolescents who can develop lifemanagement strategies despite of the limitations caused by disease, reported being less bothered by disease, and were able to keep better quality of life. Based on these results, nurses need to teach parents of adolescents with epilepsy to keep normal relations with their children Parents should be advised to encourage adolescents to maintain normal life pattern, peer interaction, and to involve in group activities, in order to increase their life satisfaction.