探索罕見疾病兒家長喪子之敘事研究

本研究目的在探索罕見疾病患者家長面對罹病子女發病後之生活困境、生命威脅、過世喪慟等議題，及其生活變化與應對調適，透過敘事研究方法，讓罹病逝去子女之家長述說疾病確診後的生命經驗，探究其生命歷程進行瞭解與分析。訪談六位罕見疾病患者家長後，整理出主要發現有一、罕見疾病之生活轉變：孩子發病後照顧者面對悲傷歷程有其階段性發展，於家庭內部出現夫妻、親子、手足、經濟等多重壓力和困難，同時承受社會歧視和偏見，形成糾結交織的困境。二、預期性悲傷課題面對與學習：照顧者必然經歷創傷痛苦及分離痛苦，但仍能從中發展出因應疾病衝擊的生命價值、減少遺憾，進而賦予逆境意義，發展出正向展望以面對後續生活，並積極將愛傳遞至社會形成支持資源。三、孩子逝世後調適歷程：照顧者在失落及復原方向之間來回擺盪，藉由喪慟經驗重新詮釋死亡、以孩子為生命導師，從曾經擁有的經驗回溯，進而對已逝子女寄予感恩，對喪子（女）重新定義。從研究發現中可看見罕病家長面對子女照顧至過世之歷經一、罕病兒罹病後照顧者便展開來回擺盪的人生，二、照顧者在生活難題中尋求與重新界定生命意義，以及三、罕病子女過世後，照顧者重新建構後續生活。本研究對家長、實務工作者與後續研究發展建議如下，一、罕病兒家長可運用對於喪慟之準備，配合因應資源，相互支持陪伴。二、助人實務工作者依罕見疾病不同階段需要提供協助，在相關知識擴展對罕見疾病的認識，期有效切合罕病家庭之需求。三、建議未來罕見疾病家庭相關研究，可採縱貫性研究方法或擴大罕病患者類型為研究對象，使罕見疾病研究趨於完整。關鍵字：罕見疾病、子女喪慟、預期性悲傷、悲傷調適

關鍵字

罕見疾病；子女喪慟；預期性悲傷；悲傷調適

並列摘要

This research aimed to explore the experiences that the parents are struggling with in living adversities, life threats, and griefs toward death caused by the children diagnosed with rare diseases. Meanwhile, how they coped with and adjusted since the family living had been impacted as the rare disorder care is the primary concern also detected. The researcher understood and analysed the life history through narrative research by six main caregivers as interviewees. Storytelling revealed their experiences and family histories with children suffering from rare diseases. The findings of this study are as follows, 1.Life changed because of rare diseases: Parents who were confronting stages of grieving development from their children diagnosed with rare diseases. Within the family, multiple stresses and hardships regarding conjugal, parental, and sibling relationship maintenance and family financial burden turned up. The main caregivers also bore the discriminations and prejudices of the neighbourhood. The burdens were challenging due to the difficulties interplayed and complicated. 2.Confronting and learning in anticipatory grief: Although the afflictions of emotional trauma and separation were almost inevitable, the parents developed coping skills for coming challenges of rare diseases. To build up the positive value of life, alleviate loss, and find the special meaning of difficulties included. 3.Adjustment process post the rare disease child passed away: Main caregivers shared the experience of rapid swinging between loss and rehabilitation after they lost their children. To redefine the loss for subsequent life maintenance by reviewing and reexplaining the bereavement experience of the child's death. To build up the positive meaning post funeral and express gratitude to their deceased children. The research also found the evolution of the long-term process of rare disorders' parental care until the children passed away. 1.Since the care difficulties of rare disorders, the loss-hope swinging life had become the subject in the conjugal family development. 2.Caregivers sought their living redefinition through the experience of hardships caused by life-threatening child care. And, 3.Caregivers would seek and build up a meaningful and creative life and value by learning of the bereavement. The recommendations related to the subject of rare diseases to the parents, practitioners, and researchers as follows, 1.For the life-threaten child care preparation, parents could link up the assistance and resources to sustain in the context of multiple adversities and collaborate to break through the limitations. 2.To the helping professionals, appropriate support must engage with the need assessment that is based on the phase of rare diseases proceeding. Hence, knowledge related to rare diseases must be conducted in continual education. 3.To the researchers, the methodology of longitudinal research or expanding the variety of rare diseases was recommended if the relevant research was carried on. Keywords: rare disease, bereaved parents, anticipatory grief, grieving adjustment