新診斷白血病兒童住院期間主要照顧者之生活品質

Quality of Life of Caregivers of Newly Diagnosed Leukemia Children during Hospitalization

本研究目的為探討新診斷癌症兒童的主要照顧者於孩子住院期間，對住院、診斷、治療的主觀認知及對其生活品質之影響。以質性研究設計，研究對象不癌症兒童之主要照顧者，使用半結構性會談方式收集資料，與主要照顧者進行深入訪談，訪談內容寫成行為過程記錄，並以余等(1991)內容分析法整理歸納。結果發現主要照顧者在面對孩子診斷為癌症後，歷經震驚、否認、對疾病的不確定感、與逐漸適應等階段，對其主觀認知之生活品質的影響分為(1)生理層面有睡眠與體力的降低、身體狀況變差;(2)心理層面互動減少、家庭的照顧無法兼顧；(4)環境層面包括飲食的不正常、經濟上的負荷、休閒生活的減少。籍由本研究的結果，可瞭解新診斷為癌症兒童之主要照顧者所認知的生活品質，可供臨床醫護人員提供適當照護措施的參考。

The purpose of the study was to identify caregivers' perception of quality of life during hospitalization of newly diagnosed leukemia children. A qualitative design was adopted. The researcher collected data through semi-structured interviews when leukemia children were hospitalized and receiving cancer chemotherapy. The first author interviewed caregivers at the pediatric unit of a university hospital. After each interview, the process recordings were recorded retrospectively and analyzed according to the principles of content analysis described by Chao et al. (1991). The findings indicated that caregivers went through a trajectory of shock, denial, uncertainty, and adjustment. Their perceptions of quality of life were identified as: (1) sleep disturbance and poor physical status; (2) uncertainty about the child's condition, fear of recurrence, and dependence on belief and religious explanation of the disease; (3) decreasing social activities and inability to care for other family members; (4) irregular life style, financial burden, and decreasing leisure time. The findings of this study may help health workers further understand perceptions of quality of life in caregivers of newly diagnosed leukemia children.