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研究生: 林怡秀
Lin, Yi-Hsiu
論文名稱: 癌症病友線上故事 — 台灣某電子佈告欄癌症病友自介貼文之言談分析
Cancer Stories Online — Discourse Analysis of Self-Introduction Postings by Cancer Patients in a Taiwanese Bulletin Board System
指導教授: 蔡美慧
Tsai, Mei-hui
學位類別: 碩士
Master
系所名稱: 文學院 - 外國語文學系
Department of Foreign Languages and Literature
論文出版年: 2013
畢業學年度: 101
語文別: 英文
論文頁數: 83
中文關鍵詞: 線上罹癌故事年輕癌症病患電子佈告欄線上社會支持言談分析網路醫療溝通電腦輔助溝通年齡揭露社會媒體社會心理特質
外文關鍵詞: cancer stories online, young cancer patients, bulletin board system (BBS), social support online, discourse analysis, online health communication, computer-mediated communication, age-disclosure, social media, psychosocial characteristics
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  • 網路是現代人尋求資訊以及建立社會網路的重要管道。透過網路尋求醫療相關資訊也因為網路使用的廣泛而蔚為盛行(Diaz et al. 2002),很多不常在社交場合被公開討論的醫療健康議題,例如:癌症,也因為網路可以匿名的特性而在網路上得到很好的討論機會。在現代社會中,癌症被認為是一項重症也因此讓其患者感到無可奈何,癌症診斷本身以及其後續治療並且成為病患感到焦慮的緣由(Merckaert et al. 2010)。在此種情況之下,癌症病患不僅需要專業的醫療處置也需要來自他人的社會支持。然而,他們可能會因為擔心受到汙名化以及不一樣的對待(Hilton at al. 2009)而避免在面對面的場合當中承認自己的罹癌身分,因此,透過網路就成為他們可以完全表達自我的好方法。除此之外,由於癌症病患的每一社會心理特質都有可能成為其生活品質的預測指標,了解他們的社會心理特質就成為一件很重要的事(Parker et al. 2003)。因此,本研究試圖透過分析癌症病患在網路討論區所張貼的自我罹癌經驗以了解他們的社會心理特質。本研究首先檢視言談特色,接著針對這些言談特色所反映出的癌症病患社會心理特質進行進一步的討論。
    本研究所檢視的線上社會媒體是現今在台灣最被廣泛使用也最受歡迎的KDD (化名)電子佈告欄,而分析語料「自介貼文」則是來自KDD當中的一個癌症相關看板(以下簡稱為「癌症看板」或「KDD癌症看板」),此看板的參與者大都為癌症病友(以下稱為「罹癌板友」)或親友(以下稱為「癌症病患親友」)。自介貼文通常是此看板板友的第一次貼文或第一次公開介紹自己,而其內容包含了癌症病患的個人基本資料、從獲知診斷那一刻起至治療過程的種種罹癌經驗與情緒的抒發等。本研究共得58篇來自癌症病患本人的自介貼文,它們的貼文日期為2005年10月29日至2012年6月29日。本研究採用「言談分析」(discourse analysis)的角度檢視自介貼文內容。
    經過檢視,本研究發現以下三個言談特色:(1)高達84%的癌症病患自介貼文有主動「揭露年齡」(age-disclosure)的言談模式。年齡揭露的句型共有六種形式:現況式、前瞻式、回顧式、條列式、直接式以及間接式。本研究將條列式以及直接式稱為「中性揭露句型」,將另外四種句型(現況式、前瞻式、回顧式以及間接式)稱為「非中性揭露句型」;(2)罹癌板友傾向提及罹癌前生活的「正常」與「美好」,美好包含了健康的生活習慣、良好的健康狀況、有前途的工作、順遂的生活以及良好的教育程度,除此之外,他們也描寫到他們意想不到癌症診斷的一面,此種描述包含兩個概念:沒有癌症家族病史以及沒想過自己會成為癌症看板的一員;(3)超過一半(55%)的罹癌板友以鼓勵的話語為他們的自介貼文收尾,他們所提供之鼓勵的話語可分為三類,第一類包含帶有祈禱和祝福的字詞,例如:‘希望’、‘願’和‘祝’,第二類則是包含‘加油’此一詞彙,而第三類包含了可以激勵人心與給予正面力量的鼓勵詞句。
    年齡揭露此一言談特色顯示出無論是罹癌板友或是癌症病患親友都是屬於20-29歲的年輕族群。根據「年輕」以及以上所提及的三個言談特色,本研究推導出以下三個和罹癌板友社會心理特質相關的論點:(1)縱使此族群之罹癌板友並非醫療專業人士,他們本能地意識到年齡於「醫療健康」此情境脈絡的言談討論是重要的基本資訊;(2)他們對於罹癌前正常與美好生活的描述反映出他們難以接受癌症診斷的一面,而以下三個觀點更說明了他們對於癌症診斷的排斥與抗拒:第一,青壯年階段(20-29歲)罹癌有悖於一般人對身體健康發展階段的「規範性期望」(normative expectation)。第二,罹癌板友在對於罹癌事實提出質疑的時候附帶提到自己的年齡,代表著「年記輕輕竟得惡疾」是引發他們無法面對事實以及感到憤怒的緣由(例如:‘為甚麼會是我?我才27歲!!’)。第三、在揭露年齡的時候使用蘊含「違背期待」的副詞‘才’(例如:‘我才27歲!!’)也透露了他們拒絕年輕罹癌的態度;(3)參與KDD癌症看板以及提供鼓勵的話語則反映出他們對於相互支持的需求。
    由於年輕癌症病患為癌症看板的主要族群,此看板提供了年輕病患一個專屬於他們所屬年齡層的心理與社會支持空間。醫療人員對於相關線上病友交流園地的參與有助於了解此年齡層癌症病患的社會心理需求,甚至有助於推動衛教資訊之宣導。此外,本研究從以下三個方向增加了年齡在醫療脈絡下的理解:年齡是(1)病患疾病歷程的參考點、(2)人類生命歷程的參考點以及(3)病患抗拒違背身體健康發展階段規範性期望之診斷的原因。

    The Internet is an important contemporary channel that allows people to find information and create social networks. With the universality of Internet use, searching for medical information online is a trend (Diaz et al. 2002). Many health-related topics, such as cancer, which are not typically discussed openly in social conversation, are discussed online because of the anonymity granted to participants. In modern society, cancer is perceived as a serious disease and often leads patients to feel helpless. Being diagnosed with cancer and its subsequent treatment are stressful events (Merckaert et al. 2010). While cancer patients need is medical treatment, they also require support from others. However, concern about others’ reactions and the fear of being treated differently or stigmatized (Hilton at al. 2009), may lead cancer patients to feel embarrassed about acknowledging their identity as cancer patients in face-to-face communication. Communicating online is a practical vehicle for patients to express themselves wholly. Understanding a cancer patient’s psychosocial character is important because their psychological state can act as predictors of their quality of life (Parker et al. 2003). Thus, the present study aims to have a better understanding of cancer patients' psychosocial characteristics by examining their accounts of illness experiences posted on Internet forums. The linguistic features were first examined and then the psychosocial characteristics reflected within the linguistic features are further discussed.
    The online social medium under investigation in the present study is a Taiwanese Bulletin Board System named KDD (a pseudonym) which is the most famous and widely used one in Taiwan at present. The data examined in the present study, self-introduction posting, is collected from its cancer-related board (‘cancer board’ or ‘KDD cancer board’ hereafter) whose members are mostly cancer patients (‘patient members’ hereafter) and relatives and friends of cancer patients (‘non-patient members’ hereafter). The self-introduction postings which are usually the first posting from members in the cancer board or their first time to introduce themselves officially contain cancer patients’ personal basic information, experiences from the time they received their cancer diagnosis to treatment processes and expression of emotions. In total, 58 self-introduction postings by cancer patients were collected. These were posted between October 29, 2005 and June 29, 2012. Empirical discourse analysis was employed to analyze the self-introduction postings.
    After investigation, three linguistic features are found: (1) 84% of patient members spontaneously disclosed their age in the content of their self-introduction postings, either age at the time of posting or age at the time of their cancer diagnosis. The linguistic pattern of age-disclosure can be divided into six types: stative, prospective, retrospective, listing, direct and indirect. Listing and direct formats are termed as ‘neutral pattern for age-disclosure’ in the present study which made up 53% of all types of age-disclosure formats. The other 47% are termed as ‘non-neutral pattern for age-disclosure’ which consisted of stative, prospective, retrospective and indirect format. (2) Patient members tended to provide descriptions of a sense of normalcy and satisfaction with their lives prior to the cancer diagnosis. The satisfaction they mentioned was derived from a number of factors. These included a healthy lifestyle, good physical condition, promising job, good life and educational background. Apart from these, they also provided descriptions about their counter-expectation to the cancer diagnosis which involved two concepts: having no family history of cancer and the unexpected membership in the KDD cancer board. (3) More than half (55%) of the patient members ended their self-introduction postings with words for encouragement which can be classified into three types. The first type contained words with the meaning of praying and blessing, like ‘希望/hope,’ ‘願/wish’ and ‘祝/bless’ and the second type included the phrase ‘加油/go for it’. The third type contained encouraging words.
    The feature of age-disclosure showed that being young (in the age group of 20 to 29) is the social characteristic of all members of the cancer board, including patient members and non-patient members. Based on their being young and the above three linguistic features, we forward three arguments with regard to patient members’ psychosocial characteristics: (1) Even though they are not medical professionals they intuitively know the importance of age in medical contexts. (2) They had difficulties in accepting their cancer diagnosis as reflected by their description of a normal and good life prior to the cancer diagnosis. Moreover, they even resist to the cancer diagnosis as supported by the following three viewpoints. First, getting cancer at such a young age runs contrary to the normative expectation of physical health development. Second, presenting their own age when expressing anger about getting cancer strongly suggests that their age is a contributing factor to their anger (e.g. ‘Why me? I am only 27’). Third, the use of evaluative adverb, such as ‘only,’ when disclosing their own age (e.g. ‘I am only 27’) further emphasizes their vehement rejection of their cancer diagnosis. (3) They were in need of mutual support as reflected by their participation in KDD cancer board and their provision of words for encouragement.
    Since young cancer patients are the most frequent users of the cancer board, it provides them with an exclusive space to fulfill their psychosocial needs. A dedicated forum also functions as an invaluable corpus of patient voices that can inform health professionals of the needs and concerns of young cancer patients. Moreover, it can equally provide an efficient vehicle for the dissemination of cancer treatment education by health professionals. The present study enhances the understanding of age in medical contexts in the following three directions: Age is (1) a point of reference of a patient’s disease trajectory, (2) a point of reference of a person’s life course, and (3) the reason for denial when a patient is faced with a disease that is foreign to his/her expectation because it violates the assumed normal physical development.

    ABSTRACT (CHINESE) i ABSTRACT (ENGLISH) iv ACKNOWLEDGEMENTS viii TABLE OF CONTENTS ix LIST OF TABLES xi LIST OF EXCERPTS xii LIST OF EXAMPLES xii GLOSSARY OF TERMS xii CHAPTER ONE INTRODUCTION 1 1.1 Background and Motivation 1 1.2 Purpose of the Present Study 3 1.3 Research Questions 4 1.4 Preview of the Following Chapters 4 CHAPTER TWO LITERATURE REVIEW 6 2.1 Computer-Mediated Communication 6 2.2 Online Health Communication 7 2.3 Storytelling and Narrative Medicine 9 2.4 Social Support for Cancer Patients 11 2.5 Age-Disclosure 13 CHAPTER THREE METHODOLOGY 16 3.1 Data Collection 16 3.2 Data Analysis 19 CHAPTER FOUR FINDINGS 31 4.1 Age-Disclosure 31 4.2 Normal and Good Life Prior to Cancer Diagnosis 41 4.3 Words for Encouragement 45 CHAPTER FIVE DISCUSSION 49 5.1 The Meaning of Age 50 5.2 Resistance to the Shocking Cancer Diagnosis 53 5.2.1 Cancer Diagnosis is Unexpected and Unforgettable 53 5.2.2 Resistance to Cancer Diagnosis 57 5.3 Social Support 65 CHAPTER SIX CONCLUSION AND IMPLICATION 71 6.1 Summary of Main Findings 71 6.2 Implications of the Present Study 73 6.3 Limitations of the Present Study 74 6.4 Suggestions for Further Studies 74 6.5 Contributions 76 REFERENCES 78

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