林安邦博士An-Pan Lin Ph.D.洪怡文Yi-Weng Hung2019-08-28不公開2019-08-282010http://etds.lib.ntnu.edu.tw/cgi-bin/gs32/gsweb.cgi?o=dstdcdr&s=id=%22GN0596101227%22.&%22.id.&http://rportal.lib.ntnu.edu.tw:80/handle/20.500.12235/85617糖寶寶上學去--第一型糖尿病學童就學權益與學校適應之研究 摘 要 本研究的主要目的在探討：一、了解第一型糖尿病童的生病經驗與意義。二、了解第一型糖尿病童在台灣教育體系中主觀感受到的的教育經驗。三、了解第一型糖尿病童在學校的學習適應情形。四、藉由糖寶寶弱勢族群的身分，以其遭遇與經驗說明台灣教育體系所持的態度及隱含的價值。五、針對研究發現，提出協助第一型糖尿病童學校適應之具體建議，並落實其就學權益的保障。 為達上述目的，本研究採取質性研究中的敘事研究與深度訪談法，訪談兩位研究參與者在義務教育階段的學校適應情況。研究獲致的發現如下： 一、 個人心理適應方面：1.帶病生活，無可否認的「身體病弱」。2.母親、教師與同儕有重要作用，影響動機和需求。3.因病而有正負面自我概念 。4.擔心被貼標籤，甚至放棄重大傷病卡的社福優惠。 二、 社會人際適應方面：1.師生互動較保守內向，師長的溫暖接納可帶來正向學習經驗與疾病控制，促進病童的自我實現。2.同儕互動較為封閉，甚至全無好友，但欺侮在未病前是不存在的。 三、 學習適應方面：1.未有併發症前智力與一般同儕無異。2.病童不希望有過度保護或限制的差別待遇。 3.認同校規，但回診與住院及高低血糖情況無法避免。 四、 由訪談資料歸結出病童需協助與爭取的基本權益有：入學請求權、提供合宜適性課程的教育基本權、無歧視的平等權及家長教育權。 本研究最後依據研究發現提出若干建議，以供社會及相關政策、學校單位及師長、家長及病童與未來研究之參考，期能協助第一型糖尿病童建立正向的學校適應生活。 【關鍵字】第一型糖尿病、學校適應、就學權益The Study On The Rights and Adaptations in School for Children with Type 1 diabetes Hung yi-weng Abstract The main objectives of the study are: (1) to understand the life experiences of children who are afflicted with type 1 diabetes and the meaning behind those experiences; (2) to understand those children’s subjective feelings fostered during their experience in the Taiwanese education system; (3) to understand type 1 diabetic children’s adjustment to a school setting, (4) using reflections of the actual experiences of these children to reveal the hidden value of the Taiwanese education system, (5) through the findings of the study, to form concrete recommendations to assist children with type 1 diabetes in actualizing and ensuring their rights to receiving an uncompromised learning experience. In order to achieve the abovementioned objectives, the study adopts the narrative and in-depth study method of qualitative-style study. The study interviews two study participants regarding their adjustment during primary public education. The following discoveries were made: 1) Personal psychological adjustment: (a) physical weakness accompanies everyday lifestyle, (b) mother, teachers, and colleagues are critical in influencing incentives and demand, (c) positive and/or negative self-image is created by the disease. 2) Socialization adjustment: (a) the tendency to be conservative and introverted in the context of student-teacher interaction – warm acceptances created by teachers and adult figures tend to steer the learning experience positively and help to control the disease, enhancing the self-realization of the diseased children, (b) the tendency to be isolated or friendless in the context of peer-to-peer interaction is observed. However, no observation is made of bullying by others. 3) Learning adjustment: (a) intelligence level is no different from peers prior to complication of the disease; (b) Sick children do not want to be overly-protected or receive special treatment; (c) they recognize the school rules on attendance, etc., but they cannot avoid regular hospital visits, hospitalization, and dangerously high or low glucose level situations. 4) According to the study, the summarized basic rights to strive for are: the right to enter school, the right to be provided with a suitable educational experience, the right to unprejudiced, equal treatment, and the right to parental education. Finally, the study provides several recommendations according to the analysis in order to provide a basis for consideration by the social policy-making agencies, education entities, parents, afflicted children, and other researchers. The end goal is to assist type 1 diabetes children with a positive adaptation to their schooling experience. 【Key words】:Type 1 Diabetes, The Study of Rights, School Adaptation第一型糖尿病就學權益學校適應Type 1 DiabetesThe Study of RightsSchool Adaptation