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研究生:吳尚潔
研究生(外文):Shang-chieh Wu
論文名稱:共生-器官捐贈意願登錄系統之改善設計研究
論文名稱(外文):Symbiosis: The design study of improving the organ and tissue donation registry system
指導教授:陸定邦陸定邦引用關係孔憲法孔憲法引用關係
指導教授(外文):Ding-bang LuhShiann-far Kung
學位類別:碩士
校院名稱:國立成功大學
系所名稱:創意產業設計研究所
學門:藝術學門
學類:視覺藝術學類
論文種類:學術論文
論文出版年:2009
畢業學年度:97
語文別:英文
論文頁數:138
中文關鍵詞:器官捐贈器官勸募器官移植大體捐贈捐贈限制登錄系統
外文關鍵詞:Body DonationOrgan ProcurementOrgan DonationOrgan TransplantationRegistry SystemDonation Limitation
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國內器官移植技術已臻純熟,然而移植器官的供需失衡仍是無法突破的困境。台灣此時約有六千餘名器官衰竭之病患在生命邊緣徘徊,一年卻只有平均一百九十名捐贈者,多數病患不是在等待「稀望」中死亡,就是至國外器官黑市購買器官,這樣的作法不只使捐贈者與受贈者承擔重大的風險,更引發國際人權迫害的爭議。

器官移植醫學不同於其他健康照護領域,必須仰賴公眾的認同和參與,因而器官勸募受到倫理、人權、社會、經濟及法律等眾多面向的關注。透過教育、立法或勸募組織重整進而改善國內捐贈環境固然是治本的方式,並可大幅度改善勸募成效,然而牽涉到認知和人權的問題,進展成果相對緩慢,對於大部分器官衰竭的病患更是遙不可及的漫長等待。

意願登錄系統是一般民眾第一個深入接觸「器官捐贈」的途徑,也可以當作是器官勸募的門面。儘管多數民眾認同器官捐贈的價值,卻僅有五十四萬人曾經簽署器官捐贈同意卡,簽卡率自九十年來更呈現明顯逐年下降的情況。這份研究期望透過改善器官意願登錄系統的方式,以保障簽署者身體自主權的方式,並整合既有捐贈者家屬之補助及支持方案,提升一般民眾對於器官捐贈的價值感知,在符合現行法律規定及既有民情下提出改善設計方案,嘗試解決器官捐贈同意卡簽卡率低靡的問題。

研究內容包含專家訪談及一般民眾對器官捐贈的認知的量化研究,對於執行現況及一般民眾認知都提供更客觀及具體的輪廓。在量化研究部分,發現在大多數民眾表達支持器官捐贈的背景下,實際行動簽署的人僅7%,更有近半民眾實際上不確定自身意願。研究同時調查人口變項與捐贈意願的關連,發現學歷較高較認同器官捐贈的作法,而其他人口變項:年齡、性別、宗教、婚姻狀況則無顯著影響;在捐贈動機的研究上發現捐贈意願強弱會影響到其所偏好之誘因,例如對於原本就願意捐贈的族群,醫療喪葬補助更能有效促使其簽署器捐卡;而針對捐贈意願不明確的族群,捐贈限制(可選擇只捐贈部分特定器官)較提供喪葬醫療補助更能有效加強捐贈動機,並可在關鍵時刻使83%的家屬感到更踏實。另外研究證實在願意捐贈器官的族群中有40%願意捐贈大體提供醫學研究,若能在器捐登錄系統中加入大體捐贈之選項功能,可大幅度改善國內醫學院缺乏大體捐贈的狀況。最後研究亦針對國內尊重死者意願的民情,卻不擅與家人溝通死亡議題的問題,提出提高溝通意願的知會功能設計,經證實能夠滿足近七成受訪者之需求。
Although the improvement in medical technology has made organ transplantation become a hope for critically ill patients, the biggest obstacle to the progress is the organ shortage. There are more than six thousands people in Taiwan waiting for lifesaving organ transplants who suffer from medical conditions or devastating injuries that can be successfully treated with donated organs or tissues. However, there were only less than two hundred cadaveric donors per year. Most of the patients died when they were waiting for the dim hope, desperation drives the others to participate in transplant tourism to undeveloped countries which obviously invade human rights and also entail grave health risks to both patients and donors.

Transplantation is the only area in all of health care which cannot exist without the participation of the public. Organ procurement has direct bearing on organ donation but has ethical, human right, social, economy and legal ramifications. With no doubts, educational program, regulation revision and organization transformation are the core measures to reach better achievement, where most of the related research and organ procurement conference have been put emphasized on. Even so most of the patients cannot wait until the notable changing happened.

A significant factor in the shortage continues to be the gap between the number of people that are in favor of organ donation and the number of people that have effectively documented a donation decision. The purposes of the study are to improve the design of organ donation registry system for promoting the donate cadaveric (Brain Death) organ under validity compensation, rights and body autonomy as the solutions for organ shortage.

Contents of this research include the qualitative interviews with procurement professionals and quantitative research of the public that underlying the present procurement situation and public cognitions. According to the population sample studies, most of people were in favor of organ donation while half of subjects were unsure about the donation decision and only 7% have signed the donation card before. The results showed that the group with higher educational levels had more positive feedback to organ donation. Moreover, the study found that there was relatively little difference among gender, age, religious and marital status regarding their perspectives towards diverse incentives. The various donating attitudes will influence the incentive preferences. For example, the donation limitation works more effectively than the financial compensation to convince those people who are indecisive or refuse to donate. At critical times, donation limitation can relieve 83% of the family to follow the deceased’s will. Furthermore, the research perceived that 40% of people in favor of organ donation are willing to donate their bodies for medical research. If the registry systems were combined, the problem of lacking body donation for medical research can also be solved. The research also proposed the notification service which may help people to inform their family and friends regarding their donation decision which had been proven to have satisfied 70% of subjects’ needs.
ABSTRACT I
ACKNOWLEDGEMENTS V
TABLE OF CONTENTS VII
LIST OF TABLES XI
LIST OF FIGURES XIII
CHAPTER ONE INTRODUCTION 1
1.1MOTIVES AND RESEARCH BACKGROUND 1
1.1.1 Motives 1
1.1.2 Research Background 2
1.2 OBJECTIVES AND SIGNIFICANCE 4
1.2.1 Objectives 4
1.2.2 Significance 5
1.3 HYPOTHESIS 7
1.4 RESEARCH FRAMEWORK 8
1.5 SUBJECTS 9
CHAPTER TWO LITERATURE REVIEW 10
2.1 DEFINITION 10
2.2 MILESTONES OF ORGAN TRANSPLANTATION 11
2.3 LEGISLATIONS 11
2.3.1 Brain Death Criteria 11
2.3.2 “Opt-in” or “Opt-out” 13
2.4 FOREIGN CASES 17
2.4.1 The Spanish Model 17
2.4.2 The United States Model 19
2.5 DOMESTIC CASE 22
2.5.1 Organ Procurement Network 22
2.5.2 Difficulties and Solutions 25
2.5.3 The Need of Body Donation for Medical Research 31
2.6 REGISTRY SYSTEM 32
2.6.1 Best Practice 32
2.6.2 The Existing Registry System in Taiwan 35
CHAPTER THREE RESEARCH PROCESS AND METHODOLOGY 38
3.1 RESEARCH PROCESS AND METHODS 38
3.2 QUESTIONNAIRE DEVELOPMENT 39
3.2.1 Questionnaire for Design Guidelines 42
3.2.2 Questionnaire for Design Verifications 42
3.3 DESIGN ASSESSMENT 43
CHAPTER FOUR CONCEPT DEVELOPMENT AND PROTOTYPING 45
4.1 DESIGN PROCESS 45
4.2 DESIGN GUIDELINES 46
4.2.1 Legislative Aspect 46
4.2.2 Practical Aspect 46
4.3 CONCEPT DESIGN 49
4.4 PRELIMINARY EVALUATION 53
4.5 REVISIONS AND PROTOTYPING 56
CHAPTER FIVE EVALUATION OF REGISTRY SYSTEM 62
5.1 PARTICIPANTS 62
5.2 SOCIAL COGNITION INVESTIGATION 65
5.2.1 Attitudes of General Public toward Organ Donation65
5.2.2 Attitudes of General Public toward Body Donation 70
5.2.3 Attitudes of Donating Deceased Family’s Organ 71
5.3 SYSTEM REQUIREMENTS AND EVALUATIONS 73
5.3.1 Reflection of Diverse Incentives 73
5.3.2 Notification Service 80
5.3.3 Information Requirements 81
5.3.4 Evaluation of Interface Design 84
5.3.5 Feedbacks from the Professionals 86
5.4 SUGGESTED EXECUTION PLAN 87
CHAPTER SIX CONCLUSIONS AND SUGGESTIONS 90
6.1 CONCLUSIONS 90
6.2 RESEARCH LIMITATIONS 94
6.3 SUGGESTIONS FOR FUTURE RESEARCHES 95

REFERENCES 96
APPENDIX 1 台灣現行器官捐贈意願登錄表格 100
APPENDIX 2 生命末期意願徵詢書 101
APPENDIX 3 美國CALIFORNIA器官組織捐贈登記表格 102
APPENDIX 4 美國ARIZONA器官組織捐贈登記表 103
APPENDIX 5 美國COLORADO器官組織捐贈登記表 105
APPENDIX 6 美國CONNECTICUT器官組織捐贈隨身卡 106
APPENDIX 7 美國LOUISIANA器官組織捐贈登記表 107
APPENDIX 8 ACTIONABLE DONOR DESIGNATION SHARE 2008 108
APPENDIX 9 台灣人口教育程度結構及戶籍人口數 109
APPENDIX 10 拒絕器官捐贈之動機及原因整理 110
APPENDIX 11 器官捐贈勸募專業人員焦點訪談紀錄-勸募現況 111
APPENDIX 12 器官捐贈勸募專業人員焦點訪談紀錄-對系統建議118
APPENDIX 13 器官捐贈認知度問卷調查 125
APPENDIX 14 使用者(一般民眾)問卷 127
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