一位罕見疾病學童學校支持系統建構之研究

Abstract

摘要 本研究採用行動研究法，透過資源整合，實施入班支持行動，進行五次入班宣導，並結合專業醫師醫療資源及社福資源，針對一位國小罕見疾病外胚層發育不良併無汗學童建構學校支持系統。研究目的為增進該生的同儕互動、自我瞭解、轉銜協助、及提出建構支持系統注意事項。 研究結果顯示： 一、該生進步情形 （一）透過輔導室社交測量3.0前後測結果得知，該生的班上社會地位指數(天馬型別)由臨界進步到一般；班上社會地位分類(Coie型別)由被拒絕進步到普通；被拒次釋由十九次減少至四次；已加入次級團體。 (二)訪談該生導師、家長、同儕、該生及問卷調查得知，該生人際互動、情緒管理及同儕接納度進步很多。 二、學校支持系統的建構已對該生、家長、同儕、導師及學校老師等對象提供支持。 三、學校支持系統的實施，能增進該生同儕接納度。 四、學校支持系統的實施，能使該生更瞭解自己。 五、學校支持系統的實施，能協助該生順利轉銜，進入軟硬體皆合適合的國中就讀。 六、藉由本研究能提出建構支持系統相關注意事項。 最後根據研究結果分別對教育主管機關、學校、資源班老師、罕見疾病家長提出具體建議，並提出研究限制及未來研究建議。Abstract The present study adopts the action research appproach. By means of integration of resources, in-class support, we launched five in-classs publicity programs. Further associating ourselves with the doctors and such medical professional resources, we focused on a case of hypohidrotic ectodermal dysplasia-a sort of rare disorders in a primary school to construct the school supporting system. The study is intended to enhance such case for better interaction with peers, enhance the self-awareness, in-transfer support and offer significant notes in the construction of the supporting systems. The study yields primarily the following findings: I. Improvement of the subject case: (a)The results of the pre-and post-social measure 3.0 tests of the Counseling Office indicate that Case's social status index (Coie) in the class improved from being rejected to ordinary. The frequency of being rejected dropped from 19 times to 4 times. The case alredy entered the secondary body. (b) Results of interview with the Case's Homeroom Teacher, parents, peers, the Case as well as questionnaire survey indicate that the Case significantly improvednin interpersonal relationship, emotion management and acceptability to peers. II. The construction of the school supporting system has rendered support to the Case, the Case's Homeroom Teacher, parents, peers and schoolteachers. III. The enforcement of hte school supporting system can enhance the acceptation of his classmates. IV. The enforenment of the school supporting system has enabled the Case to better understand himself. V. The enforcement of the school supporting system has virtually helped the Case satisfactorily transfer into a junior high school which is appropriate in both software ＆hardware. VI. The present study has offered the construction of supporting systems and the relevant issues. Based on the findings yielded through the present study, the Study offers handy and concrete proposals to the competent authorities in charge of education, school, school teachers of the resource-oriented class and parents of the rare disorders. It, as well, offers proposals regarding the restriction over the study and futhure study.