The Psychological and Faith Process of the Caregivers of Rare Diseases： A Study on the Self-narrative from Primary Caregivers of Niemann-Pick Disease patients

[[abstract]]罕見疾病照顧者同時要面臨經濟、家庭、生理、心理、人際等多方面的壓力，研究者自己面對罕見疾病帶來的家庭衝擊與改變，敘事這漫長苦難的經歷，期盼社會注意到罕病族群的生活實境，讓更多罕病家庭能得到幫助與關懷。 本研究以自我敘說歸納自己的心理歷程，發現自己的自我定位隨著苦難事件的內涵而改變，並且隨著被照顧者的病情變化而有所起伏。 在陪病歷程中，研究者體驗到苦難有三個意義：教育、轉變、盼望。 透過苦難，研究者被教導更認識上帝，進而更信靠上帝，與上帝建立更親密的關係。 研究者本身也因為苦難產生角色上、心境上、及信仰上的改變。而在苦難中不斷經歷的恩典，是盼望的來源。 苦難的核心是信，本文也探討加爾文對「信」的詮釋，並發現信乃是「堅定認識上帝的慈愛」，不只是獲得客觀的知識，更是獲得在關係上的知識，並有超越性、領受性與連結性的特性。 本研究透過研究者的自我敘說，以自身經歷的苦難敘事，檢核苦難的意義與加爾文對「信」的論述。 在敘事過程中，研究者以深度的自我探索，加上聖經話語與敘事的交錯對話，覺察自我的內涵，也更認識上帝的形象與作為。 在自我覺察方面，發現苦難中之人的信仰有「知」、「情感」與「行為」的層面。在知的層面，乃是人對上帝「堅定的認識」；在情感的層面，一個堅定認識上帝的人會信靠上帝，期盼走在上帝的旨意中，以上帝的旨意為自己的使命與生命意義；在行為的層面，一個堅定認識上帝的人會因信而在上帝的恩典中稱義重生，行出信心與愛人的行為。 Rare disease caregivers must face economic, family, physical, psychological, interpersonal pressures. The author of this thesis faces the shocks and changes brought by the rare diseases of her children. She narrates her long-suffering experience and she hopes that the society pays attention to the living environment of the patients so that rare disease patients can receive help and care from the society. The research focuses on the self-narration of the author’s psychological process, and her discovery that her self-positioning changes with the suffering and fluctuates with the patients’ conditions. During the process, the author realizes that there are three meanings of suffering： education, transformation, and hope. In Christian belief, Christians are taught to know God and trust in God through suffering. After trusting in God, human beings receive the grace of forgiveness from their sins, and therefore be able to repent and reborn. Also because of the presence of the Holy Spirit, there is hope of breaking away from suffering. The heart of suffering is faith, which is also the starting point of the belief development. Calvin's interpretation of "faithfulness" is "a firm understanding of God's love". It is not only to obtain objective knowledge, but also to gain knowledge of the relationship, which has the feature of passiveness and connectivity. This study examines the meaning of suffering and Calvin's discussion of “faith” through the author’s self-narration and her own suffering. During the narration, the author combines the deep self-search with constant conversation between biblical verses and the narrative content to reach self-awareness, and also to understand God’s image and doings. It was found that there are three aspects when it comes to discussing why people believe in a religion -- “knowledge”, “emotion and "behavior." From the aspect of knowledge, it is people's "firm understanding of God” that helps people obtain the objective knowledge and the knowledge of the relationship with God. From the emotional aspect, a person who has a firm understanding of God trusts God. He or she is expected to follow God's will and adopts God's will as his or her mission and meaning of life. From the behavioral aspect, a person who has a firm understanding of God repents and acts accordingly because of God's grace. The person, therefore, lives a life of confidence in God and a life full of love