台灣地區血友病患與血友愛滋病患之生病經驗

Hemophilia and HIV-infected Hemophilia Patients’ Illness Experiences in Taiwan

周富美(Fu-Mei Chou)

指導教授 ： 呂淑妤、葉錦瑩

臺北醫學大學/醫學院/醫學科學研究所/碩士(2005年)

摘要

摘 要 對大多數人而言，血友愛滋病患是個很陌生的名詞，台灣卻有五十三名血友病患，因輸血感染愛滋病毒。六年前的一次採訪，認識了這群血友愛滋病患，他們自組中華浮木濟世會，為病友爭取應有的醫療照護與福利。本研究之主要目的，是希望以病患主觀經驗出發，探討台灣地區血友病患與血友愛滋病患之生病經驗。 本研究採質性研究法，針對血友病患與血友愛滋病患進行深入訪談，以訪談內容作為主要分析資料，訪談對象共十二人，包括六名血友病患，以及六名血友愛滋病患。 研究結果發現，血友病患與血友愛滋病患有四個主要共同經驗，包括醫療照護與衛教資訊不足、醫療費用龐大導致經濟窘困，以及送「紅包」、「逛」醫院尋求「良醫」的過程，同時也因疾病造成肢體殘障而延誤婚期，擔心生育子女可能「複製悲劇」。 此外，研究也呈現出血友病患與血友愛滋病患有四個不同的生病經驗，包括血友愛滋病患具有傳染力，且疾病治療方式較複雜，病患平均存活年限降低，血友愛滋病患被視為「愛滋病患」，未獲妥善醫療照護；血友愛滋病患自覺受到的社會誤解與歧視程度，更甚於血友病患。在社會支持方面，血友愛滋病患籌組自助團體，以及專家學者給予專業意見等幫助，有助於提升弱勢病患之醫療照護品質。 關鍵字：血友病、血友愛滋病患、生病經驗

關鍵字

血友病 ； 血友愛滋病患 ； 生病經驗

並列摘要

Abstract HIV-infected hemophilia patients, a rather unfamiliar term for most people. It’s a lifelong nightmare for 53 hemophiliacs infected with HIV due to injection of blood clotting factor. The first time I met HIV-infected hemophilia patients was six years ago during an investigative reporting. They energetically organized “Driftwood club R. O. C.” with a lot of patient friends. Together they made effort to fight for better medical care and welfare. The main purpose of present study is willing to know the subjective experience of hemophilia and HIV-infected hemophilia patients’ illness experiences in Taiwan. This is a qualitative analysis study by interviewing Six male hemophilia patients and Six male HIV-infected hemophilia patients. The study, applying qualitative research method, use in depth interviewing and content analysis method of qualitative analysis. Twelve cases are discussed in present study. The finding of this study contained four parts of common illness experiences of hemophilia patients and Six male HIV-infected hemophilia patients. First, they don’t have enough medical care and health education information. Second, patients spend a surprising amount to pay medical expenses and put them self into a straitened circumstances. Third, for a better medical care by a good doctor, patients and patients’ family used to prepare a cash gift (red envelope) for doctors and go hospital shopping. Furthermore, patients’ extremities was deformed by frequently bleeding, they can’t get married as they wish. They also worried about their next generation may be duplicate the same fate of diseases and illness. In addition, the result also shows four different illness experiences. First, HIV is a kind of transmission disease. To diagnose and give proper treatment for HIV-infected hemophilia patients is very complicated and difficult. Second, compare to hemophilia patients, HIV-infected hemophilia patients’ average age was reduced. Third, the HIV-infected hemophilia patients were treated as HIV patients without appropriate treatment and medical care. Furthermore, HIV-infected hemophilia patients’ experienced more misunderstanding and prejudice than hemophilia patients. In the aspect of social support, HIV-infected hemophilia patients organized a self-help organization by themselves. Specialists and scholars provide their opinion and suggestion which contribute to promote the quality of medical treatment and care for discriminated patients. Key Word： Hemophilia、HIV-infected Hemophilia Patients、illness experience

並列關鍵字

Hemophilia ； HIV-infected Hemophilia Patients ； illness experience

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