罹患第一型糖尿病之青少年與疾病共舞的經驗歷程

本研究之目的是為瞭解第一型糖尿病青少年與疾病共存的生活經驗。採立意取樣，於南部某醫學中心的門診及兒科病房，運用深度訪談方法，並以錄音筆全程記錄，共收集七位個案由依賴轉變獨立自主的過程及對經歷事件感受的資料。將訪談內容完整轉換為文本後，以Giorgi現象學研究分析法進行資料整理，從個案敘述的經驗脈絡中歸納出五個主題及13項次主題：一、舞曲變奏(陌生情境的衝擊、眾多眼光的關注)；二、進退失據(家庭保護的牽絆、同儕關係的困境、異同生活的徘徊)；三、步調重整(面對治療的事實、考量生活的限制)；四、律動協調(觀察能力的提升、生活步調的養成、掌控主權的轉移)；五、舞步創新(獨立生活的展開、兩難情境的對策、生活疾病的融合)。本研究發現，第一型糖尿病青少年罹病後，對疾病感受、親子關係、疾病公開、同儕相處的經驗，會影響日後獨立自主的發展。本研究可作為第一型糖尿病兒童或青少年出院護理計劃之參考，相關醫護人員在瞭解他們發展獨立自主過程的生活經驗後，可以積極協助及指導他們控制疾病的知識及技巧，增加個人對健康的控制感，以提升適應疾病能力，並促進家庭及學校的照顧品質，減少同儕的傷害，以便維持健康、發展獨立自主，達到生理、心理及社會最佳狀態。

關鍵字

第一型糖尿病；青少年；生活經驗；質性研究

並列摘要

The purpose of this study is to understand the life experiences of adolescents afflicted with type 1 diabetes coexist with sickness. Using purposive sampling, a total of seven cases were recruited from outpatient clinics and pediatric wards in a medical center in Southern Taiwan. The data were collected through in-depth interviews and recorded by recording pen, which were about the process of their transition from being dependent to independent, and their feelings in experiencing the events. After converting all the interview contents to text documents, Giorgi’s phenomenological method of analysis was applied to the data, and the experience patterns of the described cases were concluded into five major and 13 sub themes: 1. Dance music variation (the impact of an unfamiliar situation, the attention received from many people); 2. In a dilemma (the burdens of family protection, the difficulties of peer relationship, the uncertainties about the similarities and differences in life); 3. Step adjusting (facing the reality of treatment, considering about the limitations of life); 4. Rhythm coordination (improving the ability of observation, establishing the pace of life, shifting the controlling authority); 5. Dance step innovation (the beginning of independent living, countermeasures for the dilemma of circumstances, the integration of life and disease). The study found that after the adolescents who suffered from type 1 diabetes, the experiences of adolescents in feeling about the disease, the parent-child relationship, the reveal of the disease, and getting along with their peers, will affect their development of independence later on. This study may serve as a reference for the care plan of type 1 diabetic children or adolescents after their discharge from the hospital. After the associated healthcare professionals understand about their life experiences in the development of independence, they will be able to actively assist and guide them through the knowledge and skills required to control the disease, and improve their control on personal health, thus to improve their ability of adapting to the disease, and also improve the quality of care at home and school; minimize the harm from peers; allow them to maintain a healthy, self-independent development, and achieve physical, psychological and social optimum state.