| Summary: | 碩士 === 國立東華大學 === 諮商與臨床心理學系 === 105 === For rare-disease patients, their families are primary pillars to rely on while being in the society and the world. Because of physical inabilities or social difficulties, looking for a position of well-being becomes a main issue for themselves and their families. Therefore, the medical services they perceived are mostly based on the bio-medical model and the stress-coping model which neglect the importance of the context in daily experience.
In this study, the researcher interviewed a father and a mother from different families which content rare-disease patients for collecting their life experience. Using Critical Narrative Analysis as method and the philosophy of Emmanuel Levinas as framework to analysis and interpret those daily saying under the cultural and social context. In the proximity of being with rare-diseases, the sense of sensitivity the temporality were used to explain the life world which conducted by the relation between the subject and the other. During the process, researcher attempted to understand the experience of subjectivity whom surrounded rare-disease patients.
In the relationship co-existing with rare-disease patients, a new temporality which is different from the past will be discovered. Family members’ feeling of anxiety and responsibility, which caused by the disease, unfold the ethical adjustment and reflexivity between relatives. The growing of new horizons to the future and the world enlightens a way to ethical position in disease situation. For clinical workers, this research indicates the impossibilities of their own existing while facing suffering, and provides a possible position of looking at suffering.
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