從生命歷程觀點看思覺失調症患者手足照顧者之照顧經驗

本研究主要藉由生命歷程觀點的視角去探討思覺失調症患者之手足照顧者的照顧經驗，三個主要研究目的包含手足承接照顧責任的過程探究、手足作為主要照顧者的照顧經驗探究以及手足作為主要照顧者之照顧經驗對其自身帶來之變化。透過質性研究的方法進行研究，並透過立意抽樣的方式招募研究對象，再透過深度訪談進行資料蒐集的方式，最後以質性資料分析的方式來完成此研究。筆者最終於社區精神復健中心、醫院以及康復之家當中招募到8名中年的手足照顧者，並在訪談後整理其經驗，彙整出下列的研究發現：一、大部分的未患病手足在照顧前期並不會是主要照顧的角色，而是會作為「旁觀者」、「被照顧者」、「陪伴者」、「資訊提供者」、「救火員」以及「局外人」在照顧關係當中生存著，而當初始的照顧者遭遇變故、無力繼續面對照顧或是患病手足的疾病狀況出現變化會導致照顧責任需要移轉到手足身上。二、親緣關係以及文化期待所衍生的責任感、手足之間的情感、手足擁有比較好的照顧能力與資源都會是手足承接照顧責任的影響因素。三、手足照顧者主要負責的照顧內涵包括協助就醫、做出照顧決策、問題行為善後與處理、照顧相關費用支應、情感性支持與關懷以及協助短暫返家。四、在提供照顧的過程當中手足會面隊到三個重大的挑戰，分別是「因為倉促承接照顧責任而恐懼、慌張」、「因為其他手足對於照顧責任的忽視而獨自面對龐大的照顧壓力」以及「因為肩負多個社會角色的期待與任務而面對到內心的拉扯與犧牲」。五、照顧經驗會帶給手足照顧者各種生活、生命層面的變化，其中包含經濟狀況的轉變、自我生活的轉變、生涯規劃的轉變以及生理、心理層面的轉變，而心理層面的轉變指的是手足照顧者會因為照顧而產生許多複雜的情感，如罪惡感、憤怒、恥辱感、心酸感、無助感、無望感等，但隨著時間推演、經驗累積，手足照顧者最後也能夠以更加知足以及豁達的感受去面對照顧的一切。

關鍵字

思覺失調症；手足照顧者；照顧經驗；生命歷程觀點

並列摘要

This research mainly explores the caring experience of sibling caregivers of patients with schizophrenia from Life Course perspective, including 3 main purposes, the process of sibling takeover the care responsibility from former caregiver, the caring experience as a main caregiver, and what changes brought to them from the care experience. Conducting research through qualitative methods, recruit participant through purposive sampling, then conduct data collection through in-depth interviews, and organize the collected data through qualitative data analysis. In this research, 8 sibling caregivers were interviewed, the finding of research is summarized as following: 1. Most siblings will not be main caregiver in the early stage of care, but will act as "bystander", "care recipient", "accompanying person", "information provider", "firefighter" and "outsider" in care relationship. However, when the original caregiver encounter accident, the disease status of sick sibling changes, or the original caregiver no longer willing to care, the responsibility of care will transfer to the sibling. 2. The sense of responsibility derived from kinship and cultural expectations, the affection between siblings, and siblings having better caring abilities and resources are all factors that affect siblings' taking on care responsibilities. 3. The content of care that sibling caregivers are mainly responsible for includes assisting in seeking medical treatment, making care decisions, dealing with of problem behaviors, paying care-related expenses, giving emotional support, and assisting in returning home for a short time. 4. In the process of caring, sibling caregivers encounter 3 major challenges which are "encounter fear and panic due to hasty acceptance of care responsibility", "have huge care pressure because other siblings neglect their responsibility of refuse to assist care" and "face inner pull and have to make sacrifices because of expectations of multi social roles". 5. Care experience will bring various changes to sibling caregivers, including change in daily life, economic status, career planning, health and emotion. Among them, emotion change refer to emotional changes in sibling caregivers due to their care experiences, such as guilt, anger, shame, helplessness, hopelessness. However, as time goes on and experience accumulation, sibling caregivers can see caring with a more contented and open mind.

並列關鍵字

schizophrenia ； sibling caregiver ； care experience ； Life Course perspective

參考文獻

王文科、王智弘（2010）。質的研究的信度和效度。彰化師大教育學報，17，29-50。https://doi.org/10.6769/JENCUE.201006.0029

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