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

Abstract

本研究探討運動神經元疾病患者之罹病後生命經驗，目的為理解患者在生活中因疾病所引發之失落、悲傷與調適經驗。 本研究為立意取樣，邀請二位尚未喪失口語表達能力之運動神經元疾病患者參與研究。研究方法採用質性研究取向的敘事研究，並以「整體—內容」分析與「類別—內容分析」作為資料分析之方法。經由資料理解與分析後，研究發現與結果如下： 一、運動神經元疾病雖可分為不同之類型，但因其發病年齡與症狀之相似，因此不同患者所經驗到的失落有許多相似之處，且隨著病程的發展與惡化，疾病也帶來更深、更多的失落，而這些失落不會停止或消失，終其一生都會持續影響患者的生活。 二、運動神經元疾病患者在不同疾病階段的悲傷樣貌有所不同，而二位研究參與者可能是受到人格因素、華人文化與罹病時間較長的影響，因此較少提及自己的悲傷。此外，雖然失落隨著病程發展而增加，但患者的悲傷並未因此而更加顯著，因為患者在長期與病共存的生活中，學會因應疾病所造成的改變，也已慢慢習慣與適應疾病與失落的存在。 三、本研究發現運動神經元疾病患者的調適經驗可分為針對生理、心理、社會、與靈性精神四個不同方面的失落與悲傷之調適。二位研究參與者在罹病過程中，因其獨特的人格特質、生長背景與脈絡而發展出個人的症狀因應方式與調適方式，也創造出與其他患者不同的調適經驗。此外，患者得到許多系統中（家人、病友、與社會資源）的協助與支持，讓他們更有力量去面對與調適罹病後的生活，二人也皆因一個關鍵事件而改變對疾病的態度與看法，找到自己的生活目標與可以發揮自己能力的新舞台。整體觀看二位研究參與者罹病後的生命經驗，發現其調適過程有如鐘擺一般不斷在「失落導向—經驗失落的痛苦」與「復原導向—因應現實生活改變」兩端之間擺盪，且其擺盪的幅度與頻率隨著他們適應運動神經元疾病的程度增加而緩緩減少；也可發現二人在調適過程中，慢慢建構出疾病的意義，也因疾病展現出自己生命的韌性與價值。 最後根據本研究發現與結果，提出研究限制與建議以作為未來研究的參考。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 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.