本體安全感對罕見疾病主要照顧者反思性學習的重要性之研究－以裘馨氏肌肉萎縮症為例

本研究旨在透過罕見疾病主要照顧者的敘說，瞭解影響其本體安全感的相關因素，及本體安全感對其習得各類照顧策略、賦予自身特殊生命意義之反思學習的影響，進而提供成人教育領域對罕見疾病照顧者反思學習方案規劃的建議。研究結果歸納如下：一、罕見疾病主要照顧者從醫學知識、宗教傳統、與個人照顧經驗的反思之間不斷的修正自我過去的認知，並從中獲得對社會世界的信任感。再者，重要他人的支持與依賴有助於個體在遭遇「與命運攸關」的事件中，順利將衝擊轉化為良性發展。另外，當照顧者發覺自己能夠勝任照顧工作，並且能夠對其他同質性團體成員提供幫助時，能使他們重新確立自己的價值，獲得自我認同。最後，家中的經濟安全與實質支持越高，罕見疾病帶來的衝擊與壓力就越輕，並且主要照顧者也能有餘力思索並規劃生命，讓自己過得更好。二、反思性學習能夠增強罕見疾病主要照顧者照顧歷程中的本體安全感，但過於穩固的本體安全感，也可能成為罕見疾病主要照顧者反思性學習的阻礙。三、本體安全感在罕見疾病主要照顧者持續反思的過程中，能使他們願意嘗試不同於以往的挑戰，從中獲得另類觀點。當這些新的觀點及方式得以讓個體安然度過重大衝擊的危機，他們也在當中建立了更正向的自我認同、穩固本體安全感，並且在與外界互動的過程中持續建構對自我的認同感，進而提升本體安全感，並重新建構生命意義。最後，基於上述之研究結果，本研究針對罕見疾病主要照顧者、相關實務工作者（相關病友團體及成人教育者）、以及未來相關研究等方面提出建議。

關鍵字

本體安全感；反思性學習；罕見疾病；主要照顧者

並列摘要

The purpose of this study rare diseases through the primary caregivers of narrative to understand the impact of its sense of ontological security related factors, and ontological security for all types of learning to t ake care strategy, given its own special meaning of life on the impact of reflexive learning, and the provision of adult education the field of rare diseases for caregivers to reflexive learning on the recommendations of the study program planning. The results are summarized as follows: Firstly, the rare diseases primary caregivers from the medical knowledge, religious tradition, experience and personal reflection to take care of the amendment between the past self-awareness, and gain the trust of the commu nity a sense of the world. Furthermore, it is important to rely on others to support and contribute to the individual in the event of " fatefulness" the incident, smoothly into the sound development of the impact. In addition, when primary caregivers can f ind themselves competent to take care of work and to other members of homogeneous groups help, allow them to re -establish their own value, access to self -identity. Finally, the family's economic security and material support to the higher impact of rare di seases with less pressure, and primary caregivers can have the spare capacity to think and plan of life, so that their own better. Secondly, reflective learning can enhance the ontological security of primary caregivers of rare diseases, however, for too substantial ontological security, it might be the obstacles of reflective learning of primary caregivers of rare diseases. Thirdly, through the continuing process of reflection, ontological security of primary caregivers of rare diseases, it makes them will ing to try different challenges from the past and obtain the distinctive perspectives. When the primary caregivers survive from the crisis of great shock with these new ideas and methods, they establish more positive self-identity and firm their ontologica l security more as well. Besides, they construct their self-identity continually with the process of interaction of outside world and then proceed to enhance ontological security to re -establish their life meaning. Finally, based on the above findings, thi s study is aimed at providing suggestions from primary caregivers of rare diseases, related practical workers (related patient groups and adult educationists) and future related researches as well.