當「不標準的病人」遇到醫療專業體制：身心障礙者就醫經驗的質化分析

When “Non-Standard Patients” Encounter the Medical Professional System: A Qualitative Analysis of Medical Experiences among People with Disabilities

隨著人權意識的興起，身心障礙者的健康權亦受到關注。身心障礙者為醫療服務的經常使用者，但在講求標準化的專業醫療體制中，常被視為是「不標準的病人」而面臨就醫障礙。本研究目的為呈現障礙者於就醫時所面臨的問題；並以「醫用者」觀點探討障礙者在醫療體系下所展現的主體性與行動性。本研究以質化研究方法，探討12位肢體障礙者與14位智能障礙者及其照顧者的就醫經驗，輔以三位醫療人員的訪談資料，分析障礙者在醫療體系下的處境。研究發現，障礙者在醫療體制中顯得格格不入，例如，不適用於某些檢驗設備、有共病症狀問題、不易與醫療人員溝通。障礙者在面臨就醫困境時，有些可以自身經驗引導醫療人員發展出合作模式、有些則因處置問題而產生二度傷害、有些則因過多失敗經驗而選擇放棄醫療或檢查。建議針對標準化醫療設備或流程，能考慮合理調整原則、醫學教育應強化對於障礙者的認識與知能、政府單位於相關機構評鑑時，可考量服務使用者的意見。 Along with the increasing awareness of human rights, the right to health of people with disabilities is also receiving considerable attention. People with disabilities are regular users of medical services. In the standardized professional medical system, they are often regarded as “non-standard patients” and face many medical barriers. The purpose of this study was to present the problems faced by disabled people in medical environments, and to explore their opinions and actions under the medical system from the perspective of “medical service users”. This study employed qualitative research methods to explore the subjective medical experiences of 12 physically disabled persons and 14 intellectually disabled persons and their caregivers, supplemented with interview data on three medical professionals to analyze the situation of people with disabilities in the medical system. This study found that people with disabilities appeared to be out of place in the standardization of the medical system, such as non-applicability to certain testing or inspection equipment, the occurrence of secondary or comorbid conditions, and difficulty to communicate with medical personnel. In the face of medical difficulties, some people with disabilities could guide the medical staff to develop a cooperative mode; some of these patients had secondary injuries due to improper treatments, while others chose to give up medical treatment or examinations due to excessive failure experiences. The suggestions of this study include reasonably adjusting standardized medical devices or procedures, strengthening the understanding and knowledge regarding disabled persons in medical education, and incorporating the voices of medical service users into agency evaluations conducted by the central or local governments.