臺灣博碩士論文加值系統

背景:
台灣HIV感染者(people living with HIV, PLWH)有年輕化趨勢，PLWH需要規則服藥，以控制疾病的發展。目前PLWH需面對感染HIV而造成的疾病污名化，且台灣PLWH的病情告知受道德觀影響而需面臨進退兩難的困境，會導致PLWH產生憂鬱而影響HIV的治療，污名化、病情告知及憂鬱等複雜的心理及社會問題會影響PLWH身心及靈性健康，故本研究想要以質量混合性研究方法探討PLWH病情告知、污名化對憂鬱的影響。
目的: 採混合性研究方法探討PLWH病情告知、污名化及憂鬱之相關因素及病情告知歷程與污名化經驗
方法:
本研究為橫斷性取向質量混合性研究，第一階段先以量性研究，以方便取樣方式，選取台灣中部210名PLWH，填答問卷，研究工具包括人口學基本資料、社會網絡量表(Lubben Social Network Scale, LSNS-6)、中文版18題污名化量表及流行病學研究中心憂鬱量表(Center of Epidemiological Study-Depression; CES-D)四部分，研究資料以SPSS for Windows 19.0進行建檔及分析。第二階段再以質性方式，採方便取樣訪談19位PLWH病情告知歷程與污名經驗，最後進行量性及質性資料結果比較與整合。
結果：
在本混合性研究中，PLWH病情告知的比率依序為伴侶、家人及朋友。在家人知道病情（F =24.58, p < .001）時對於「污名化感受」得分顯著高於家人不知情者；而朋友（含同事、同學等）不知道病情(F=29.80, p < .001)時「污名化感受」得分顯著高於知情者。PLWH之污名化得分平均為53.11 ± 8.46分(總分18-72分)，污名化在在年齡小於20歲（F =6.63, p < .01）、性取向為雙性戀/跨性別者（F =3.79, p < .05）、有伴侶者（F =10.96, p < .01）、無職業（F =12.47, p < .01）、經濟狀況月收入一萬以下者（F =3.93, p < .01）、一年內未感染性病者（F =11.63, p < .01）統計達顯著差異。污名化與憂鬱狀態呈現正相關（r = 0.37，p < .01）。PLWH之憂鬱狀態得分平均為18.34 ± 10.5分(總分0 - 60分)，54.1%有憂鬱傾向。污名化程度越高，憂鬱狀態越高，污名程度每增加1分，則憂鬱風險會增加7.1% (勝算比1.071，95%信賴區間1.01-1.14)，而社會網絡總分每增加一分降低11.9%憂鬱風險 (勝算比0.881，95%信賴區間0.81-0.96)，經檢定結果社會網絡並非PLWH污名化導致憂鬱的中介變項。
質性研究結果歸納出PLWH病情告知歷程與污名經驗會經歷二個階段、六個主題，第一階段為「病情告知前階段」，第二階段為「病情告知後的階段」，PLWH不一定會經歷每個階段，每個PLWH所經歷的階段皆不盡相同。在「病情告知前階段」涵蓋「反覆掙扎猶豫是否讓人知道病情」、「病情告知的考量」及「主動或迫於無奈進行告知」三個主題。第二階段「病情告知後的階段」涵蓋「就學或就業遭遇特別關切及要求」、「生活及就醫遭受特殊對待」、「壓力宣洩重新再出發」三個主題。家人知道病情者，在量性研究中個體化的羞辱（F =44.80, p < .001）、負面自我形象（F =28.25, p < .001）及污名化具顯著性差異（F =24.58, p < .001）。在「個體化的羞辱」面向呼應了質性研究結果次主題「家人排擠及隔離對待」及「朋友與伴侶疏遠、拋棄及暴力威脅」。在質性研究次主題「害怕面臨失業與失去伴侶的衝擊」與量性研究中「擔心公開化」的面向相呼應。在質性研究中PLWH提到的次主題「承受學校過多的關注」、「在職場被迴避及排斥」、「家人排擠及隔離對待」、「朋友與伴侶疏遠、拋棄及暴力威脅」及「就醫時的異樣眼光與特殊對待」呼應量性研究中「個體化的羞辱」面向。
結論與建議：
本混合性研究PLWH家人知道病情污名化程度較嚴重，臨床人員需評估PLWH的污名及憂鬱情形，並依據PLWH狀況協助引導PLWH病情告知方式、對象及時機，以協助PLWH面對及處理病情告知的過程不會遭受污名對待，造成PLWH之靈性不安。

Background:In Taiwan, the age trend of people living with HIV (PLWH) has decreased. PLWH need to adhere to pharmacological treatment to control the disease progress. They face the HIV/AIDS-related stigma and encounter morality implicated dilemma regarding disease disclosure, which may result in depression and affect the HIV treatment. Complicated emotional and social concerns such as stigma, disease disclosure and depression may affect the health of body, mind and spirit in the PLWH. Therefore, the purpose of this study was to use mixed methods, qualitative/quantitative design to explore the impact of disease closure and stigma on depression in PLWH.
Purpose:This mixed methods, qualitative/quantitative study explored factors associated with disease disclosure, stigma and depression, the processes of disease disclosure and experiences of stigma in the PLWH.
Method:This study used mixed methods, qualitative/quantitative design. The first phase was a quantitative design. A convenience sample of 210 PLWH from central Taiwan completed the following instruments: a demographic information sheet, Lubben Social Network Scale (LSNS-6), 18-item Chinese Stigma Scale, and Center of Epidemiological Study - Depression (CES-D). The data were analyzed using SPSS for Windows 19.0. The second phase used qualitative research method. A convenience sample of 19 PLWH participated in interviews regarding processes of disease disclosure and experiences of stigma. Then, the authors compared and synthesized the quantitative and qualitative data.
Results:The results of this mixed methods study showed that the audiences of disease disclosure, from the highest to the lowest percentages, were partners, families and friends. Families and friends who were aware of the illness had significantly higher scores for “perceptions of stigma”, as compared to families (F =24.58, p < 0.001) and friends (F=29.80, p < 0.001) who were not aware of the illness. The average stigma score in PLWH was 53.11 ± 8.46 (ranges of total scores: 18-72). stigma was significantly different in participants who aged 20 and younger (F=6.63, p < 0.01), identified sexual orientation as bisexual/ transgender (F=3.79, p < 0.05), had a partner (F=10.96, p < 0.01), were unemployed (F=12.47, p < 0.01), month earned less than $10,000 NT (F=3.93, p< 0.01), and did not attract sexual transmitted diseases within a year (F=11.63, p < 0.01). There was a significant positive correlation between stigma and depression (r = 0.37, p < .01). The average score of depression in PLWH was 18.34 ± 10.5 (ranges of total score: 0-60). 54.1% of the participants showed a tendency of depression. The higher the degree of stigma, the higher the tendency for depression. As the stigma scores increased by one point, the risk of depression increased by 7.1% (OR = 1.071, 95% CI: 1.01, 1.14). However, as the Social Network total scores decreased by one point, the risk of depression decreased by 11.9% (OR=0.881, 95% CI: 0.81, 0.96). The analysis results showed that social network was not a mediator between stigma and depression in PLWH.
Analysis of the qualitative results on disclosure of disease and experience of stigma revealed two stages and six themes. Stage one was “the stage prior to disease disclosure”; whereas stage two involved “the stage after disease disclosure”. Not all PLWH elected to disclose the illness. There were three themes under stage one: “recurrent hesitations about the decision of disease disclosure”, “consideration of disease disclosure”, and “initiated or forced to disclose illness”. There were three themes under stage two: “experienced special considerations and requirements in school and at work”, “received special treatments in healthcare and in life”, and “re-start after stress relief”. In the quantitative study, there were significant differences in personalized stigma (F=44.80, p < 0.001), negative self-image (F=28.25, p < 0.001) and stigma (F=24.58, p < 0.001) in the participants whose families were aware of the illness. The domain of “personalized stigma” was consistent with two subthemes from the qualitative analysis: “alienation and isolation from families” and “alienation, abandonment, and violent threatening from friends and partners”. A subtheme from the qualitative analysis “fear of unemployment and losing partners” echoed with a domain from the quantitative analysis “disclosure concerns”. Five subthemes from the qualitative analysis (“endured excessive attention from school”, “avoidance and rejection from workplace”, “alienation and isolation from families”, “alienation, abandonment, and violent threatening from friends and partners”, “peculiar and special treatments when seeking healthcare”) resonated with a domain of “personalized stigma” from the quantitative analysis.
Conclusion and Recommendations:The PLWH in Taiwan experienced greater degree of stigmatization when their families were aware of the illness. Clinicians need to assess stigmatization and depression in PLWH, and use the assessment findings to guide the approaches, audiences and timing of disease disclosure. Additionally, clinicians are to assist PLWH in facing and managing the process of disease disclosure to avoid stigmatization and spiritual restlessness.

中文摘要 i
英文摘要 iii
目次 vi
表次 ix
圖次 xi
第一章 緒論 1
第一節 研究背景與動機 1
第二節 研究目的與問題 8
第三節 名詞解釋 9
第二章 文獻探討 11
第一節 PLWH之疾病特性與治療方式 11
第二節 PLWH病患之病情告知 15
第三節 PLWH污名化 25
第四節 PLWH病患之憂鬱 46
第五節 混合研究(MIXED-METHODS RESEARCH)簡介 63
第三章 研究方法 65
第一節 BERGER HIV STIGMA SCALE(HSS)中文量表的發展與測試結果 65
第二節 量性研究之研究設計 83
第三節 質性研究之研究設計 89
第四節 研究倫理考量 94
第五節 資料處理與分析 95
第四章 研究結果 97
第一節 PLWH人口學特性與社會網絡之描述 97
第二節 PLWH之污名化感受描述性及差異性分析 102
第三節 PLWH之憂鬱狀況描述性及差異性分析 110
第四節 PLWH之社會網絡差異性分析 120
第五節 PLWH污名化、社會網絡與憂鬱狀態相關性分析 124
第六節 PLWH污名化感受與憂鬱傾向分析 126
第七節 總結 129
第八節 質性研究之研究結果 131
第九節 質性研究總結 167
第十節 質性量性研究結果比較 169
第五章 討論 172
第一節 PLWH病情告知與污名化感受影響 172
第二節 人口學特性對PLWH污名化感受及憂鬱情形影響 176
第三節 PLWH污名化、病情告知與憂鬱情形相關分析 179
第六章 結論與建議 183
第一節 結論 183
第二節 研究限制 185
第三節 應用與建議 186
參考資料 189
附 錄 220
附件一、BERGER HSS授權同意翻譯函 220
附件二、中文版CESD問卷授權同意書 221
附件三、HIV STIGMA SCALE中文量表之發展與信效度檢測研究許可書 222
附件四、社會網絡LSNS問卷授權同意書 224
附件五、量性研究問卷 225
附件六、PLWH病情告知、污名化與憂鬱之相關性研究研究計畫許可書 229
附件七、質性研究訪談指引 231
附件八、PLWH病情告知與污名化經驗研究許可書 232
附件九、中文版污名化量表與其計分方式 234

 
表　　次
表 1 1 1984-2018.12本國籍感染HIV及AIDS通報數統計表 7
表 2 1 PLWH HIV污名化工具 39
表 2 2 污名化相關研究 44
表 2 3 PLWH憂鬱測量量表及憂鬱情形 55
表 3 1中文版污名化量表PLWH基本資料表 70
表 3 2 中文版污名化量表得分狀況分析表 72
表 3 3 中文版18題HSS量表適配度檢定之參數估計 76
表 3 4中文版污名化量表之驗證性因素分析(CFA)結果 78
表 3 5 中文版18題污名化量表信度分析 81
表 3 6 中文版18題HSS量表信度 81
表 3 7 中文版HSS量表與其他簡化量表比較表 82
表 4 1 PLWH基本資料 98
表 4 2 PLWH社會網絡量表得分狀況分析表 100
表 4 3 PLWH病情告知情形 101
表 4 4 中文版污名化量表得分狀況分析表 103
表 4 5 污名化感受量表在PLWH人口學變項情形摘要表 107
表 4 6 污名化感受量表在PLWH病情告知及社會網絡摘要表 109
表 4 7 CESD憂鬱量表得分狀況分析表 111
表 4 8 CESD量表在PLWH人口學變項情形ANOVA摘要總表 115
表 4 9 CESD量表在PLWH病情告知及社會網絡ANOVA摘要總表 117
表 4 10 憂鬱症狀與人口學變項間之卡方分析 118
表 4 11 社會網絡總分在人口學變項ANOVA摘要表 121
表 4 12 社會網絡總分在PLWH病情告知ANOVA摘要表 123
表 4 13 PLWH污名化、社會網絡與憂鬱狀態之相關性分析 125
表 4 14 PLWH人口學變項、污名化感受及社會網絡對憂鬱傾向預測分析 127
表 4 15 社會網絡關係對污名程度預測分析 127
表 4 16 污名化透過社會網絡間接影響憂鬱迴歸分析 128
表 4 17 PLWH受訪者基本資料一覽表 133
表 4 18 PLWH病情告知歷程與污名經驗 138
 
圖　　次
圖 1 1 本國籍感染人類免疫缺乏病毒者趨勢圖 7
圖 2 1污名、病情告知與憂鬱關係架構 23
圖 2 2 FLOROM‐SMITH & DE SANTIS( 2012）內外在HIV污名的影響 34
圖 2 3 YANG和KLEINMAN（2008）中國人污名影響三層次模型 35
圖 3 1 量表翻譯步驟 66
圖 3 2 中文版HSS量表一級標準化係數測量模式路徑圖 77
圖 3 3 研究架構 83
圖 4 1 PLWH病情告知歷程與污名經驗 137

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