血友病病童母親的照顧經驗

本研究採現象學研究法，深入探討母親照顧血友病病童的經驗感受。研究者於門診主動與前來就診的病童母親接觸，在建立信任關係後取得病童母親同意，於不受幹擾的情境下和病童母親進行深度訪談，根據訪談指引讓病童母親敘述其照顧病童的經驗感受；共計訪談了八位病童母親，所得訪談的內容以錄音記錄，將錄音訪談資料轉錄成文本後，依Giorgi現象學研究法進行資料的分析。研究結果發現，血友病病童母親的照顧經驗可歸納出五個現象主題：(1)母性角色的創作；(2)孤獨的承受；(3)不確定性的焦慮；(4)維持自我的穩定；(5)望子「成人」。本研究呈現出母親照顧血友病病童的真實經驗及其內心感受，可協助護理人員提供個別性的護理照顧，促進本土化護理臨床實務，並做爲未來發展血友病整體性健康照護之依據。

關鍵字

血友病病童；母親；疾病經驗；現象學

並列摘要

The purpose of the phenomenological study is to explore the experiences of mothers who were taking care of their hemophiliac children. The informants were contacted at the outpatient department. After obtaining informants’ trust and consent, in-depth interviews were conducted to collect data with tape-recording in an interruption-free environment. A total of eight informants were interviewed. The content of the interviews was transcribed into the narrative form and analyzed using Giorgi phenomenological method. The findings of this study showed that the mothers’ experiences in taking care of their hemophiliac children were integrated into five phenomenological themes: (1) being hurtful to the maternal role; (2) being a solitary sufferer; (3) having anxiety due to uncertainty; (4) learning to maintain an intact ego; (5) expecting for children’s growing-up. The findings of this study could provide nursing guidance for individual care, which may facilitate the development of culture-sensitive nursing interventions, and contribute to the development of comprehensive medical care for children with hemophilia.

並列關鍵字

children with hemophilia ； mother ； illness experience ； phenomenology

參考文獻

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