隨著高效能抗病毒藥物治療的推出，愛滋病病患者的不良健康狀況得以逆轉。愛滋病病毒感染已不再是無藥可治的絶症，而是一種需要終生服藥的慢性疾病。但是，藥物的出現並未減輕疾病本身對病患者的心理健康打擊，例如被社會歧視，而藥物的副作用則被大量發現，藥物治療的進步並不一定能改善病患者的生活質素，而監測患者的生活質素便成為必要。但是，目前供病患者所使用的生活質素量表，均於推出高效能抗病毒藥物治療前或不久後發展而成，並在西方國家使用，因此，此項研究的目的是要發展和確認一份與本土文化和環境背景相關的生活質素量表，供香港的華藉愛滋病病毒感染者和病患者所使用。 / 此研究項目共分為三個階段。第一階段集中於項目產生，以質性研究方法探討愛滋病病毒感染者和病患者對生活質素含義和組成內容的看法。此階段共招募了36位參與者(30男、6女)進行面對面的單獨訪問。以主題分析方法，找出了10個生活質素的類別及65個項目，並以它們為藍本構成量表的項目庫。項目庫的表面效度和全面性經參與者的確認後，新的生活質素量表CHAQOL才成立。 / 第二階段集中於項目删減。此階段以統計方法為主導，删減多餘和缺乏一貫性的項目。從168位參與者的數據分析所得，保留40個項目便能使新量表達致最理想的內部結構和項目的一致性和變異性，結果並顯示香港華藉愛滋病病毒感染者和病患者的生活質素由六個因素模型構成，這包括：「生活滿意度」、「情緒健康」、「身體健康」、「羞辱和歧視」、「親密關係」和「抗病毒治療的信念」。 / 第三階段集中測試CHAQOL量表的心理計量特質，此階段新招募了239位參與者，再測試可信度的初試和複試相隔兩週進行，分析結果顯示，40個項目的加權卡帕係數為0.46至0.93，在六個範圍組內的相關係數為0.82至0.97。至於內部一致性可信度，克隆巴赫係數為0.63至0.93。這些結果皆顯露CHAQOL量表是可信的。至於效度方面，驗證性因素檢測結果支持CHAQOL量表是由六個因素模型構成的，而多項特質排列檢驗分析結果亦顯示CHAQOL量表有良好的項目會聚性，其在六個範圍組內的會聚成功率為75%至100%，與此同時，CHAQOL量表內的所有範圍組內的區分成功率為71%至100%，只有「情緒健康」範疇得到較不理想的區分成功率。CHAQOL量表在區分已知有差異組別上的表現良好，六個構成量表的範疇均能區分有不同臨床特徵的病患者的主觀感受，這包括病情、病徵和藥物治療副作用的嚴重程度。已被確認有效度的通用生活質素量表WHQOOL-BREF和HIV Stigma量表的子量表被用作檢測CHAQOL量表的同時效度，檢測結果顯示較強至中等強度的相關性只存在於CHAQOL量表的「滿意生活度」、「情緒健康」、「身體健康」的三個範疇和WHQOOL-BREF量表內的各個範疇，但不存在於CHAQOL量表內的餘下範疇，而類似的最強相關性關係也存在於HIV Stigma量表的子量表和CHAQOL量表內的「羞辱和歧視」範疇。總括來說，測試結果提供初步科學證據支持CHAQOL量表的信度和效度。 / With the introduction of highly active antiretroviral therapy (HAART), the health status of patients with acquired immune deficiency syndrome (AIDS) becomes reversible. The human immunodeficiency virus (HIV) infection is no longer an incurable fatal disease, but a chronic disease that requires lifelong treatment. However, the emergence of HAART does not lessen the detrimental impact of the disease on the psychosocial well-being of patients, such as the effect of social stigmatization. The side effects of HAART are also well documented. Therefore, the advancement in treatment not necessarily improves the quality of life (QOL) of patients and monitoring patients’ QOL becomes crucial. Nevertheless, existing QOL measures specifically for HIV/AIDS patients were developed either before or shortly after HAART, which were used in Western countries. Therefore, the aim of this study is to develop and validate a culturally and contextually relevant QOL measure for the Chinese people living with HIV/AIDS in Hong Kong (HK). / This study comprised three phases. Phase One focused on generating items for the QOL measure. Qualitative research methodology was adopted to explore the meaning and constituents of QOL from the perspective of HIV/AIDS patients. Thirty-six (30 male, 6 female) participants were recruited for face-to-face individual interviews. Using thematic analysis, 10 QOL categories were identified, and 65 items were devised to form an item pool. The face validity and comprehensiveness of the item pool was affirmed by the participants. The initial draft of new measure, named CHAQOL, was thus established. / Phase Two focused on item reduction. A statistically driven approach was adopted to eliminate any psychometrically redundant and incoherent items. Based on the data collected from 168 participants, 40 items were retained to give the optimal internal structure and item consistency and variability. This initial version suggested a six-factor model of QOL for the Chinese people living with HIV/AIDS of HK. The six factors are: "life satisfaction", "emotional well-being", "physical well-being", "stigma and discrimination", "intimate relationships", and "belief in antiretroviral therapy" (ART). / Phase Three focused on testing the psychometric properties of the CHAQOL. Another sample of 239 HIV/AIDS participants was recruited. The test and retest conducted two weeks apart. The weighted kappa values of 40 items ranged between 0.46 and 0.93 whereas the intraclass correlation coefficients of six QOL dimensions ranged between 0.82 and 0.97. For the internal consistency, Cronbach’s alpha ranged from 0.63 to 0.93. The results demonstrated CHAQOL to be reliable. In the evaluation of construct validity, the results of confirmatory factor analysis supported the six-factor model underlying CHAQOL. Multitrait scaling analysis showed that CHAQOL had good item convergent success rate ranging from 75% to 100% for the six subscales. All subscales of the CHAQOL, except the emotional well-being, had good item discriminant validity with an item discriminant success rate ranging from 71% to 100%. Known-group comparison indicated that the CHAQOL was able to distinguish the differences in all six QOL dimensions between Chinese HIV-infected people with different levels of disease severity, symptom severity and severity of ART-related side effects. The validated generic measure WHOQOL-BREF (HK) and the HIV Stigma subscale were used to examine the concurrent validity with the CHAQOL. Strong-to-moderate correlations were found only between the CHAQOL dimensions “life satisfaction, “emotional well-being, and “physical well-being, as well as the domains of WHOQOL-BREF (HK), but not for the remaining dimensions. Similarly, strongest correlations were found between the CHAQOL subscales “stigma and discrimination and the HIV stigma subscale. The results provide evidence on the reliability and validity of the CHAQOL. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Ho, Choi Fung. / "December 2012." / Thesis (Ph.D.)--Chinese University of Hong Kong, 2013. / Includes bibliographical references (leaves 244-272). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese; appendixes includes Chinese. / List of Tables --- p.xviii / List of Figures --- p.xx / List of abbreviations --- p.xxi / List of APPENDICES --- p.xxii / Chapter Chapter 1 --- Introduction / Study Background --- p.1 / Epidemiological Background of HIV Infection --- p.3 / Overview on HIV/AIDS and Its Treatment --- p.4 / Pathogenesis --- p.4 / Disease Trajectory --- p.4 / HAART --- p.6 / Effects of HIV Infection on QOL --- p.6 / Role of Nurses in Enhancing QOL of HIV/AIDS Patients in HK --- p.8 / Aim of the Study --- p.9 / Significance of the Study --- p.9 / Chapter Chapter 2 --- Literature Review / Literature Search Strategy --- p.10 / Conceptualization and Measurement of Quality of Life (QOL) --- p.12 / QOL Concept Applied to Health Care --- p.12 / Attributes of QOL --- p.13 / Subjective construct --- p.15 / Objective indicators and proxy assessment --- p.16 / Cultural-specific and dynamic in nature --- p.17 / Multidimensional --- p.19 / Definition of QOL for health care practice. . --- p.21 / QOL Dimensions of People Living with HIV/AIDS --- p.22 / Physical Dimension --- p.23 / Overview on CD4 cell count and HIV disease stage --- p.24 / CD4 cell count --- p.24 / HIV disease stage --- p.25 / HIV-related symptoms in relation to physical health --- p.25 / CD4 cell count and disease stage in relation to physical health --- p.27 / HAART-related symptoms in relation to physical health --- p.28 / Psychological Dimension --- p.30 / Identity and adjustment --- p.30 / Uncertainty in treatment and disease outcomes --- p.32 / Psychological symptoms --- p.33 / Social Dimension --- p.35 / HIV-related stigma and discrimination --- p.36 / Outcomes of HIV disclosure on social and family relationships --- p.37 / Sexual Dimension --- p.40 / Spiritual Dimension --- p.42 / Summary on QOL Dimensions of People Living with HIV/AIDS --- p.43 / Evaluation of QOL --- p.45 / Property Requirements for Quantitative QOL Measures . --- p.46 / A Review of Generic Measures --- p.48 / MOS SF-36 --- p.48 / WHOQOL-BREF --- p.49 / Critique on generic measures --- p.50 / A Review of Disease-specific Measures --- p.51 / MOS-HIV --- p.54 / HOPES --- p.55 / FAHI --- p.56 / MQOL-HIV --- p.57 / HAT-QOL --- p.58 / Critique on disease-specific measures --- p.59 / Summary of Literature Review --- p.60 / Chapter Chapter 3 --- Methods / Operational Definitions --- p.63 / Aim of the Study --- p.64 / Study Design --- p.64 / Setting --- p.64 / Inclusion and Exclusion Criteria of the Sample --- p.66 / Phase One --- p.66 / Sampling Plan and Sample Size --- p.67 / Data Collection --- p.70 / Interview guide --- p.70 / Pilot study --- p.71 / Data Analysis --- p.72 / First: Familiarizing with the data --- p.72 / Second: Extracting initial codes --- p.72 / Third: Generating themes --- p.73 / Fourth: Reviewing the themes --- p.73 / Fifth: Defining and naming themes --- p.73 / Sixth: Comparing differences and similarities between groups --- p.74 / Measures to Ensure Rigour --- p.74 / First: Truth value and applicability --- p.75 / Second: Consistency --- p.75 / Third: Neutrality --- p.76 / Initial Draft of CHAQOL --- p.76 / Phase Two --- p.78 / Sampling Plan and Sample Size --- p.78 / Data Collection --- p.81 / Data Analysis --- p.82 / Revision and Scoring Method of CHAQOL --- p.84 / Phase Three --- p.86 / Main Study --- p.87 / Sampling plan --- p.87 / Sample size for the main study --- p.89 / Data Collection --- p.92 / Translation of the HIV Stigma Subscale --- p.94 / Data Analysis --- p.95 / Retest --- p.97 / Sampling size --- p.98 / Data Analysis --- p.98 / Ethical Consideration --- p.99 / Chapter Chapter 4 --- Findings Phase One of the Study / Introduction --- p.101 / Individual Interview --- p.102 / Demographic and Clinical Characteristics of Participants --- p.102 / Categories and Subcategories Identified in Phase One --- p.105 / Category: Perceptions of HIV Infection --- p.107 / First subcategory: threat of getting an incurable disease . --- p.107 / Second subcategory: worry about transmitting the disease to other people --- p.108 / Third subcategory: losing control over many things in life. --- p.108 / Fourth subcategory: having no future --- p.108 / Fifth subcategory: becoming a patient --- p.109 / Category: Adaptation and Coping --- p.109 / First subcategory: initial negative feelings --- p.110 / Second subcategory: confidence in overcoming difficulties --- p.110 / Third subcategory: acceptance of living with HIV --- p.111 / Fourth subcategory: letting negative feelings go --- p.111 / Fifth subcategory: thinking optimistically --- p.112 / Six subcategory: maintaining a calm and peaceful state of mind --- p.112 / Category: Perceptions of Physical Health --- p.113 / First subcategory: experiences of fatigue --- p.113 / Second subcategory: decline in physical strength --- p.113 / Third subcategory: satisfaction with present health status --- p.114 / Fourth subcategory: ability to maintain physical health --- p.114 / Fifth subcategory: worry about future health --- p.115 / Category: HIV Care Services --- p.115 / First subcategory: support from health care workers --- p.115 / Second subcategory: difficulties in scheduling regular follow-up --- p.116 / Category: Experiences in Stigma and Discrimination --- p.116 / First subcategory: worry about being regarded as shameful --- p.117 / Second subcategory: worry about being discriminated against --- p.117 / Third subcategory: worry about being estranged --- p.117 / Fourth subcategory: experiences in secrecy --- p.118 / Category: Experiences of ART --- p.118 / First subcategory: improving health status --- p.119 / Second subcategory: spoiling my appearance --- p.119 / Third subcategory: readiness for lifelong ART --- p.120 / Fourth subcategory: causing inconvenience to daily life --- p.120 / Fifth subcategory: tolerability of the side effects --- p.120 / Category: Effects of HIV on Family and Social Relationships --- p.121 / First subcategory: having a warm family --- p.121 / Second subcategory: having a regular intimate partner/spouse --- p.122 / Third subcategory: ability to take care of my family --- p.122 / Fourth subcategory: ability to maintain social relationships --- p.123 / Category: Perceptions of Sexual Relationships --- p.123 / First subcategory: avoidance of sexual activities --- p.124 / Second subcategory: satisfaction with present sexual life . --- p.124 / Category: Career and Financial Concerns --- p.125 / First subcategory: effect of HIV on my career --- p.125 / Second subcategory: having enough money to maintain my living standard --- p.125 / Third subcategory: worry about my living expenses for the future --- p.126 / Category: Pleasure and Contentment --- p.126 / First subcategory: living in preferred ways --- p.127 / Second subcategory: being able to do enjoyable things --- p.127 / Third subcategory: having somebody to share the happiness and sorrow --- p.127 / Fourth subcategory: sense of contentment --- p.128 / Comparisons of Similarities and Differences of Findings Identified by Different Groups of Participants --- p.129 / Comparing the Key Descriptions --- p.130 / First: male versus female --- p.130 / Second: those aged less than 40 years versus those aged 40 years or above --- p.131 / Third: AIDS patient versus non-AIDS patient --- p.131 / Comparing the Categories and Subcategories --- p.132 / Initial Draft of CHAQOL --- p.133 / Forming of Item Pool --- p.133 / Face Validity and Pilot Test of CHAQOL --- p.136 / First: verification of the importance of CHAQOL Items --- p.137 / Second: pilot test of the CHAQOL --- p.140 / Third: feedback and comments on CHAQOL --- p.143 / Summary --- p.144 / Chapter Chapter 5 --- Results Phase Two of the Study / Introduction --- p.145 / Phase Two of the Study --- p.146 / Demographic and Clinical Characteristics of Participants --- p.148 / Pattern of Missing Data --- p.150 / Item Reduction --- p.153 / First: Exploratory Factor Analysis --- p.153 / Second: Internal Consistency Analysis --- p.161 / Third: Variability Analysis --- p.165 / Fourth: feedback of participants --- p.168 / Summary --- p.168 / Chapter Chapter 6 --- Results Phase Three of the Study / Introduction --- p.170 / Pilot Study --- p.171 / Phase Three of the Study --- p.173 / Demographic and Clinical Characteristics of the Participants --- p.175 / DH versus HA Participants --- p.177 / Sample versus Study Population of DH Clinic --- p.177 / Psychometric Properties of CHAQOL --- p.179 / Variation and Missing Response --- p.179 / Results of all participants --- p.179 / Results of subgroup analysis --- p.183 / Subscale Score Distributions and Internal Consistency --- p.186 / Test and Retest Reliability --- p.189 / Item Convergent and Discriminant Validities --- p.191 / Confirmatory Factor Analysis --- p.199 / Concurrent Validity --- p.202 / Known-group Comparisons --- p.204 / Summary --- p.208 / Chapter Chapter 7 --- Discussion / Introduction --- p.211 / Perception of QOL among Chinese People Living with HIV/AID --- p.211 / Dynamic Nature --- p.212 / Cultural Specificity --- p.213 / Spirituality and emotional well-being --- p.214 / Intimate relationship --- p.215 / Stigma and discrimination --- p.216 / Comparing the QOL Dimensions of CHAQOL with Existing Commonly Used QOL Measures --- p.218 / Psychometric Properties of CHAQOL --- p.221 / Adequacy of the Coverage of Items --- p.221 / Item generation --- p.221 / Item reduction --- p.222 / Evidence for Reliability --- p.223 / Test and retest stability --- p.223 / Internal Consistency --- p.224 / Evidence for Validity --- p.224 / Confirmatory Factor Analysis --- p.225 / Multitrait scaling analysis --- p.226 / Known-group comparisons --- p.227 / Concurrent validity --- p.228 / Item Variation and Missing Response --- p.229 / Item Variability --- p.229 / Missing Response --- p.230 / Representativeness of Samples --- p.231 / Limitations of the Study --- p.234 / Conclusion --- p.236 / Chapter Chapter 8 --- Introduction / Implications to the Nursing Practice --- p.237 / Recommendations for Future Studies --- p.239 / Overall Conclusion --- p.242 / Reference --- p.244 / Appendices --- p.273
| Identifer | oai:union.ndltd.org:cuhk.edu.hk/oai:cuhk-dr:cuhk_327971 |
| Date | January 2013 |
| Contributors | Ho, Choi Fung., Chinese University of Hong Kong Graduate School. Division of Nursing. |
| Source Sets | The Chinese University of Hong Kong |
| Language | English, Chinese, Chinese |
| Detected Language | English |
| Type | Text, bibliography |
| Format | electronic resource, electronic resource, remote, 1 online resource (xxii, 325 leaves) : ill. |
| Coverage | China, Hong Kong, China, Hong Kong, Hong Kong, Hong Kong, Hong Kong |
| Rights | Use of this resource is governed by the terms and conditions of the Creative Commons “Attribution-NonCommercial-NoDerivatives 4.0 International” License (http://creativecommons.org/licenses/by-nc-nd/4.0/) |
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