找尋生命的希望：重症海洋性貧血患者疾病適應之研究

Adaptation to Severe Illness among People with Thalassemia Major

海洋性貧血（Thalassemia）是全世界最常見的遺傳性疾病，醫療技術與健保的開辦延長重症海洋性貧血患者的生命，海洋性貧血患者亦需要生活有品質、生命有尊嚴，生存有希望。本研究根據18位重症海洋性貧血患者的訪談資料，探究重症海洋性貧血患者自年幼階段發病至成年的疾病適應歷程及影響疾病適應的相關因素。研究發現，重症海洋性貧血患者兒少時期與成年期的生病經驗有很大的轉變，兒少階段的悲苦讓患者看不到自己的未來。然而，進入成年階段後，生命的成熟與生活的責任、穩定就業，讓海洋性貧血患者意識到自己的價值與可以期待的明天。疾病適應歷程中的社會支持、宗教信仰、醫藥進步是激發海洋性貧血患者生命期望的促進因子。疾病引起的合併症、家屬的負面態度與社會汙名是衝擊患者生存信念的風險因子。本研究針對患者家屬、社會工作者及醫療人員分別提出建議。研究結果亦可作為慢性暨重症疾患者，社會心理處遇與臨床運用之參考。

Thalassemia is a common genetic disease in the world. Medical technology and National Health Insurance prolong the lives of patients with thalassemia major. However, the psychosocial functioning of those patients could be just as important. The purpose of this study is to explore the process of adaptation in patients with thalassemia major who have been diagnosed as children, teenagers and in adulthood. The study also analyzes the factors affecting adaptation to severe illness in thalassemia major patients. The study conducts qualitative research to collect data by in-depth interviews of 18 patients with thalassemia major. The results show patients felt suffering and hopelessness in their early stage, however, maturity and responsibilities or employment helped patients to adapt well and prove their value and future after entering adulthood. The positive factors of adaptation are social support, religious beliefs, and medical technology progress, which inspire hope for thalassemia major patients. The risk factors are complications, negative attitudes towards family and social stigma, which affect the survival beliefs of patients. Finally, several suggestions for patients' families, social workers and medical professionals are recommended. The findings of this study may be employed to cope with psychosocial adaptation among patients with chronic or severe illness in clinical practice.