不被禁錮的靈魂─運動神經元疾病患者之失落、悲傷與調適經驗
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(7) Non-imprisoned SoulLoss, Grief, and Adaptation Experiences of People with Motor Neurone Disease Zi-Hui Liao Abstract !. This study investigates the life experiences of people with motor neurone disease. (MND), in order to investigate patients' loss, grief, and their adaptation experiences caused by the disease. This study employs judgment sampling and invites two MND patients who have not lost their voice and articulation ability to participate in the study. Narrative research method of the qualitative research is adopted. The data analysis is conducted in both holistic-content analysis and categorical-content analysis. The research findings are as follows: 1. Although there are many different types of MNDs, various patients reported experiencing similar loss due to the age of onset and symptoms. With the development and worsening of the disease, it brings deeper and more loss The growing loss will never stop and disappear, and continuously affect the life of the patients. 2. MND patients have different forms of grief in different stages of the disease. Two participants do not often talk about their own grief probably because of personality characteristics, the influence of Chinese culture, and long term illness. Therefore, although loss increases with the development of the disease, two participants do not significantly increase reporting their grief accordingly. Because patients have lived with the disease for a long time, they learn to adopt the changes from the disease; they also. !. v!.
(8) slowly get used to adapting to the existence of illness and loss. 3. MND patients develop their own coping strategies with symptoms, adaptation methodology, and adaptation experiences based on their unique personal traits, family background and context. They gain assistance and support from many systems (family members, wardmates, and social resources), allowing them to have power to face the life with the disease. Both of the participants change their attitudes and viewpoints toward illness, and later find the goals of life and new stage to perform because of one key event patients. After reviewing the life experiences of two participants as a whole, the researcher finds that the participants’ adaptation process is similar to a pendulum swinging between loss-oriented coping and restoration-oriented coping. Its swinging degree and frequency decrease gradually when the level of adaptation to MND increases. In addition, two participants slowly construct the meanings of the disease and discover the resilience and the value of life through the illness. Finally, based on the research results, research limitations and suggestions are discussed for the reference of future research. ! Keywords: People with Motor neurone disease, Rare disease, Loss, Grief, Adaptation experiences. !. vi!.
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(10) Happy Man. ........................................................ 60 Y. Y. Lin ........................................................ 84. Y. Y. Lin. ............................................................ 98 .................................................................................. 132 .................................................................................. 165! .............................................................................................. 165 ...................................................................................... 170 .................................................................................. 174. ...................................................................................................................... 181! .............................................................................................................. 181! .............................................................................................................. 188! .............................................................................................................................. 197! .......................................................................................... 197 .................................................................................. 198 .............................................................................................. 199 .............................................................................................. 200 ...................................................................... 201 .......................................................................................... 202. viii.
(11) 3-2-1. ..................................................................................... 36!. 3-4-1. ............................................................. 41!. 3-5-1. ............................................................................................. 42!. 3-6-1. ............................................................................. 45. 4-2-1 Happy Man. ...................................................... 80. 4-4-1 Y. Y. Lin. ....................................................... 127. 4-5-1. ............................................... 142. 4-5-2. ............................................... 147. 4-5-3. ....................................... 164. !. ix.
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