慢性骨髓性白血病病人的疾病適應與需求   免費試閱

Coping Abilities and Needs of Chronic Myelogenous Leukemia Patients

本研究旨在探究慢性骨髓性白血病病人之生理暨社會心理需求，以設計符合他們需要的服務方案，讓其需求與服務間能獲得最大的適配性。目前國內外關於慢性骨髓性白血病的文獻，多聚焦在醫療或用藥的主題，較少琢磨於病人社會情緒等心理相關議題，故希望藉由此次的質性研究，了解慢性骨髓性白血病病人治療與生活適應的圖像及社會心理需求。本研究透過焦點團體與問卷調查，蒐集到慢性骨髓性白血病病人的醫療訊息，以及疾病適應的相關議題，如對相同疾病病友的需求、對生育問題的擔心等；此外，也蒐集到疾病對病人的影響等資訊，如對親密關係與生育功能的受限、角色轉換困難、無法執行病前功能、發展出正向的疾病適應態度等。根據研究結果，本研究提出以下三個結論：疾病適應任務的特殊性、生命週期任務的干擾性，以及疾病詮釋的動態性，並針對這三個結論提出六點實務建議，包括：建構以社區場域為據點的互助網絡、給予充足的醫療資訊、培養與癌共存、倡議工作權益、提供生育保留，以及允許多元詮釋。

This article explores the biopsychosocial needs of patients with chronic myelogenous leukemia (CML). Recent studies on CML have focuses heavily on medical concerns or medicine rather than the psychosocial condition of patients. This qualitative study was conducted to clarify treatment outcomes in CML patients and their needs and perceptions regarding coping with an illness. The impact of illness was evaluated using focus groups and survey questionnaires based on the information regarding medical concerns and illness coping skills of the patients. Specific concerns regarding CML coping tasks, CML-associated obstacles to activities of daily living, and the dynamics of reframing CML were the three conclusions drawn from the results. Furthermore, we provide six practical suggestions for coping with CML, such as the construction of community networks, sufficient provision of medical information, development of living with cancer, advocacy for working rights, provision of fertility preservation, and permission for diverse reframing.