思覺失調症患者照顧者之照顧歷程敘事研究

本研究旨在探究思覺失調症患者的照顧者在照顧關係中之生活樣貌、瞭解思覺失調症患者之照顧者在照顧家人與做自己之間的角色平衡與轉換，以及藉由照顧歷程的訴說彰顯照顧者生命故事與價值。本研究以立意取樣，邀請母親、姊妹、子女各兩位照顧者為研究對象進行深度訪談。依敘事研究「整體-內容」和「類別-內容」整理、分析及歸納成照顧歷程故事及經驗，研究結果如下：一、照顧歷程樣貌：當家庭成員有人罹患思覺失調症，其他家庭成員則進入照顧者角色位置，開始承受著生理、心理、經濟及社會壓力。二、角色平衡與轉換仰賴說服自己或轉換策略：在面對多重角色無法協調時，照顧者優先選擇犧牲自己，此時照顧者會尋求心理平衡來因應失衡狀態，或以重新調整位置來做為轉換策略。三、從生命故事看見照顧者的力量：在2年到20年長期照顧且充滿苦與累的歷程中，照顧者仍能從夾縫中覓得出路，並且不離開，凸顯了照顧者的不放棄與堅毅。四、價值從照顧歷程中展現：照顧者秉持有血緣就有責任以及守住本心，從善念出發，堅持做自己認為對的事，展現對家人的不離不棄，以及心安理得的態度。最後根據研究結果進行討論，並提供臨床實務工作者、社政單位及未來研究方向之建議。

關鍵字

思覺失調症；照顧者；照顧歷程；敘事研究

並列摘要

This study aims to understand the life scope of schizophrenia patients’ caregivers in a caring relationship, and how they get balance and transit the self-image and their role according to their lived experience, as well as highlight the caregiver’s life story and value through the narrated course of caregiving. The purposive sampling method was adopted in this study. Six Subjects were recruited include two mothers, two sisters, and two children, by in-depth interview based on the narrative analysis. The research results are as follows: 1.The life scope of care-giving: When a person suffers from schizophrenia, his families members take the caregiver role and endure physiological, psychological, economic and social pressures. 2.Role balancing and transition rely on self-persuasion or strategy alternation: When caregivers are unable to coordinate their multiple roles, they first sacrifice themselves, meanwhile seek psychological adaptation to cope with the imbalance situation or reorient their position as a alternative strategy. 3.From their life stories, the caregiver’s positive strength is seen. Over the course of the long-term care that lasted two to twenty years which experienced hardship and weariness, they find out from the cracks without leaving, which highlights the caregivers’ determination and positive power. 4.The value was displayed throughout the course of caregiving: The caregivers obey their obligations to family as “blood is thicker than water”, through their “start by doing good deeds”, “do what is right”, “refusal to abandon family”, and “feel at ease” attitudes. Discussion was conducted according to the research results, and recommendations for clinical practitioners, and the policy, as well as the future research direction were proposed.