身心障礙機構癲癇控制分級管理機制建立與成效評估之研究

Study of Graded Management on Epilepsy Control Measures' Establishment and Effectiveness in the Disability Institution

智障者主要健康問題為神經性疾病，癲癇是其中之一，檢查困難等是無法提供有效醫療給身心障礙者的原因，國內研究較多涉及癲癇疾病本身的「治療」與「藥物研發」等議題的探討，而針對機構中癲癇控制管理方面則鮮少相關研究資料。本研究之目的在於檢視身心障礙機構實施「癲癇控制分級管理」之機制建立與成效評估。研究方法：採用質性個案研究蒐集機構從2009年至2015年期間之數據分析後，檢視實施結果。研究發現：（1）由發作次數與分級評估人數減少顯示本措施對於癲癇控制具有改善之成效、（2）癲癇發作問題的特質：型態不一、發作時間難以掌握且有生命的危險，因此容易使工作人員在處理過程產生急迫感、（3）癲癇發作需動用緊急人力支援而處理癲癇發作的技巧則需要靠處理者經驗的累積。（4）癲癇發作處理時面臨到：夜間照顧人力比例偏高、工作人員照顧癲癇個案心理壓力大、醫院接受癲癇急救的低意願、家長低支持度。（5）身障者在癲癇的就醫方面則面臨到設施設備與本身認知障礙的困難。結論與建議：本研究顯示本機制的實施有具體成效，癲癇發作紀錄對於機構工作人員與醫師及家長間的溝通及醫療追蹤有正面幫助，建議推廣、執行以提高其生活品質。

The neurological disorder and epilepsy are the major health problems for people with mental/intellectual disability. One reason for the bad effectiveness of treatment is because the disease is difficult to be detected. Most studies focus on the issues about the ＂treatments＂ and the ＂drug developments＂ of epilepsy and only few emphasize the control and management of epilepsy in the institutions. This study aims to analyze the establishment of ＂Epilepsy control grading management＂ and assess the effectiveness of the implemented measures. Methods: In this study, we used both qualitative and case study research methods. The data analyzed comes from the participating care institutions between 2009 and 2015 in order to evaluate the results of the implemented measures. Results: (1) the measures have been effective in improving epilepsy control according to the changes of the seizure attacks and grading assessment numbers. (2) the patterns of seizure attacks differ, their onsets are not easily controlled, and threatening risks may be caused by epilepticus. (3) immediately mobilizing emergency manpower resources when seizures occur in care institutions are necessary; employees that dealing with the attacks experience various stress factors, and the skills for dealing with seizure attacks need to be accumulated through experiences. (4) care institutions face many challenges related to seizures: the manpower ratio needed for nighttime care is high, the psychological stress related to caring for epileptic cases are high; the willingness to provide emergency aid at hospitals is low; and parental support is limited. (5) disabled individuals experience many difficulties with regard to medical care, such as limitations on the facilities and equipment, self-awareness, and communication issues. Conclusions and suggest: that the epilepsy control grading management measures have had a definite effect on seizure control for disabled individuals, and seizure data provide positive support for the institutional staff and physicians regarding communication with parents, as well as medical follow-ups. Practicing such measures can improve epileptic disorders, as well as the quality of life of people with disabilities.