為什麼是我？──胰島素依賴型糖尿病少年生活經驗之初探

本研究主要目的在初探依賴型糖尿病少年的生活經驗。研究內容是以少年發展所面臨的各項議題為背景，藉以討論該疾病對少年生活所產生的影響，然後檢視少年之家人、同儕及社會文化因素對其疾病的回應，以及少年如何在這些回應中建構自己的生活。透過與八位13-17歲的IDDM少年進行個別訪談後，結果發現：多數少年在得知自己罹患IDDM時，所產生的情緒反應是強烈而負面的，但在慢慢認知到疾病無法治癒後，便無奈地接納此疾病，並將日常的控制行為當作一種習慣。而在所有的自我照顧行為中，要屬飲食的控制為最難，因其為少年與同儕社交活動中不可或缺的一部分。不過有些受訪少年仍能從這些限制之中，找出適合自己的生活方式，雖不免有些憂慮，卻很珍惜生活中所擁有的快樂時光。除了家人與同儕的支持，社會對IDDM的烙印態度，以及IDDM少年所得到的其他社會支持都在其生活經驗中扮演舉足輕重的角色。因此我們需要將這些人的生活經驗放在其成長的社會文化框架中來加以檢視，並適時提供家庭與同儕以外的支持系統，如此才能有效地協助這些少年面對此終身相隨的疾病。

The major purpose of this study is to examine the life experience of adolescents with insulin-dependent diabetes mellitus. The study focuses on the normative psychosocial and cognitive tasks of development interacted with the illness hardships experienced by these adolescents. In addition, we also examine the roles of families, peers and social culture in influencing the life experiences of IDDM adolescents. Face-to-face interviews were done with eight IDDM adolescents who were being treated in a private hospital located in Taipei. Our research findings indicated that among all self-care behaviors, diet control is the hardest part. In addition, most felt shocked and bad when they were first diagnosed with IDDM. However, as time went by, they gradually, though unwillingly, accepted the fact that the illness is part of their life. Furthermore, they tried to follow the restricted self-care life style required to control the illness. There were worries and happiness in most of their lives, and most had dreams about their future. Finally, we found that in addition to peer and family support, the stigma of the illness and the social support IDDM adolescents obtained from other sources played important roles in their lives. It is suggested that we should examine their life experiences within the social cultural framework, and provide needed social support, so we can possibly help these adolescents cope with the illness for the rest of their life.