情生命動—一位小腦萎縮症患者的生命歷程敘說

南華大學機構典藏系統 > 人文學院 > 生死學系(生死學系碩士班,哲學與生命教育碩士班) > 博碩士論文-生死學系碩士班 > Item 987654321/21883

jsp.display-item.identifier=請使用永久網址來引用或連結此文件: http://nhuir.nhu.edu.tw/handle/987654321/21883

题名:	情生命動—一位小腦萎縮症患者的生命歷程敘說
其它题名:	Life Thrives in LoveThe Narrative Of A Machado-Joseph Disease Patient's Life Progress
作者:	陳惠貞 Chen, Hui-jen
貢獻者:	生死學研究所李燕蕙 Yen-hui Lee
关键词:	生命歷程;敘事研究;小腦萎縮症 Narrative Research;Life Progress;Machado-Joseph Disease
日期:	2005
上传时间:	2015-07-06 14:57:14 (UTC+8)
摘要:	本研究主要是透過敘事研究探討一位小腦萎縮症病患如何在不間斷的身體退化狀態下，面對疾病、面對生活，以及如何展現與創造生命活力泉源。故本研究之目的意欲關懷探究的主題：1.了解患病者本身在「未知」與「已知」基因遺傳疾病，面對疾病的態度。2. 了解家族遺傳疾病從上一代發病到下一代發病，從一人發病到多人發病，家庭成員之間對於得知疾病心態的差異，與家庭成員相互照顧關係演變歷程。3. 了解病患面對目前醫學無法找到治療方法的家族遺傳疾病，生命活下去的力量是什麼？　　　研究者先以訪談資料為主軸，進而推展文獻資料蒐集與分析。全文共分成緒論、文獻探討、研究方法、『一條繩索』的故事、故事之分析與討論、研究建議與反省等六章。　本研究結果發現：1.以本研究而言，面對命運的「未知」容易以充滿希望的態度面對疾病。而後終因病因的「已知」，希望轉變成「不會失望」的基底。2.一人生病時容易將病痛受苦之焦點置於自身。而多人生病時則化為家人親情之承擔。親代照顧關係的演化，因病情未明容易有抱怨之情形產生。手足照顧關係，則因病因明朗，而有相互體諒與團結的情形產生。3. 病患面對不治之症的家族遺傳疾病，生命活下去的力量無法單靠理性的力量活著，為家人付出的「情」意牽掛，才是維繫住患者生存之力量。　　　本研究最後依據研究過程與結果所發現之現象提出建議，希望能有助於實務單位與工作者參考。　　This narrative research aims at studying how a Machado-Joseph Disease patient faced her disease and daily life, and how she demonstrated her strength and regenerated her energy to live while her body kept degenerating. Therefore the objectives of this research are to investigate the following areas: 1) To understand the difference of the patient’s attitude before and after the awareness of her genetic disease; 2) To understand how genetic disease occurs from one generation to another, different mind set between different members of the family when they are informed of the disease, and different stages of the way family members take care of each other; 3) To understand the patient’s strength to stay alive in the knowledge of a currently incurable genetic disease.　　　The methodology in this research involves mainly with interviews, completed with literature review and data analyses. There are six chapters in this thesis, including Preface, Literature Review, Methodology, The Story of “One Rope,” Analysis and Discussion of the Story, and Introspection and Ideas of Further Research.　The findings in this research include:1. In this research, the patient faced the unknown in life with hope. After the root of the disease was identified, this hope was then transformed into the basis of “no-despair.” 2. When the patient suffered the disease, she focused her attention totally on her own pain, whereas when it turned out that there were more family members suffering the same disease, they began to bear the disease with the love of a family. When the disease was still in obscurity, there were more complaints in the family. However, when the situation was cleared up, they became understanding and the whole family was in unity.3. Facing the incurable genetic disease, the patients were not able to keep living solely with their own senses. The “love” from and to their family was the major strength that kept the patients to hang on.　　　The researcher makes some suggestions according to the process and results of this research, hoping that they might be helpful for the medical authority and workers.
显示于类别:	[生死學系(生死學系碩士班,哲學與生命教育碩士班)] 博碩士論文-生死學系碩士班

文件中的档案:

档案	描述	大小	格式	浏览次数
093NHU05672028-001.pdf		1175Kb	Adobe PDF	857	检视/开启
index.html		0Kb	HTML	196	检视/开启

在NHUIR中所有的数据项都受到原著作权保护.

TAIR相关文章

数据加载中.....