失智症家庭照顧者照顧經驗之質性研究--女兒的觀點

Abstract

本研究目的在於深入了解失智症家庭照顧者在失智親人生病歷程的照顧經驗，採用詮釋現象學的方法進行研究，以呈現現象主體的經驗。具體而言，研究者透過四位自願受訪的失智症患者的女兒的觀點，根據半結構的深度訪談所蒐集到的資料，來分析失智症家庭照顧者的照顧經驗。在研究結果的呈現上，研究者以家庭照顧者的受苦和因應兩個面向來理解照顧經驗的內涵，在分別分析個別受訪者的照顧經驗之後，進一步詮釋其中共同的經驗主題。研究結果簡述如下： 在失智症家庭照顧者照顧歷程中的受苦經驗方面，研究者詮釋出其內涵為：無力掌控失智症的降臨和進展、長期照顧過程的變數層出不窮、長期處在不確定和矛盾的疑惑不安中，持續單向付出對失智親人的愛、照顧者必須同時肩負多重角色責任，以及手足支持不夠孤軍奮鬥。 在失智症家庭照顧者的因應經驗方面，研究者詮釋出其內涵為：照顧的動力來自維持關係連結、照顧互動的原理是掌握生命本質的需要、照顧的立基是專注於此時此刻失智親人的福祉、照顧過程有賴專業的支援、照顧者以內在意志力扭轉困境、照顧的成就在於達成角色任務、從照顧經歷中學習觀照內在自我與生命本質。 本研究結果同時呈現出女兒的照顧處境是在被照顧者、照顧領導者及協同照顧者三個角色間持續轉換形成的。研究者除了詮釋並討論上述研究結果外，也討論這些結果對助人工作者的意義。文末說明本研究的貢獻與限制，並對諮商心理師、未來研究等方面提出建議。This study explored the caregiving experiences of dementia family caregivers. Hermeneutic phenomenological approach was chosen to analyze the essential themes and four daughters of dementia patients participated in the semi-structured, in-depth interview. The data was analyzed by two dimensions --- suffering and coping. For the results, the researcher first described each participant’s personal experiences, then provided a summary of the common essential themes among the participants in order to answer research questions. The findings were summarized as follows: The themes for the suffering experiences of dementia family caregivers were: unable to control the onset and progression of dementia, constant changing variables due to the long-term caregiving process, situated in uncertainty and doubt over a long period of time, providing uni-directional affections to dementia patient continually, taking on the responsibility of multiple roles, perceiving not enough sibling support and feelings of fighting a lonely battle. The themes for the coping experiences of dementia family caregivers were: maintaining a relationship bond, providing the necessities of life, focusing on the here and now and the benefits of the patient, relying on professional help, reversing the distress through one’s own willpower, achieving the task of one’s role, learning self-awareness and existence issues from caregiving. The study also found the daughters were situated in the role transformation among the being cared person, caregiving leader and cooperating caregiver. In addition to discuss these findings, the researcher also discussed the clinical implications of what these findings meant to professional helpers. The contributions and limitations were explained at the end of study. The researcher also proposed recommendations for counselors and further studies.