published_or_final_version / Community Medicine / Doctoral / Doctor of Philosophy

Aims: The overall aims of the study were to identify the information needs of Chinese HF population and to examine the effectiveness of a heart failure disease management programme (HFDMP) on patients' clinical outcomes, health-related quality of life (HRQoL), and psychological status. / Background: Heart failure (HF) is a major and increasing public health problem globally. In China, there were approximately 4,000,000 patients with HF in the year 2000 and the number is continuously increasing due to the aging population. HF greatly influences patients' lives in all aspects. Programmes are therefore in imperative need to manage the disease and increase patients' sense of well-being. / Conclusion: Findings of the study provide further evidence that the simple combination of education and telephone follow-up could improve patients' medication adherence, HRQoL, and psychological status among Chinese HF population. Moreover, booklet developed in the study, to a certain extent, can be used as the tool for clinical HF education in China. The study also provides clues and direction for health professionals to develop interventions under the situation of busy clinical work and limited resources in Chinese health care practice. / Methods: First of all, a questionnaire survey (phase I, n=347), of which the questionnaire validation (n=247) was also included, and qualitative interviews with 26 patients and 24 health professionals (phase II) were consecutively conducted to know the information needs of patients with HF. According to the results of phase I and phase II studies, a booklet was developed to address the information needs of patients. Then a prospective controlled trial (phase III, n=160) was undertaken to examine the effectiveness of a HFDMP, including the components of two-session inpatient booklet education and weekly telephone follow-up for 4 weeks after discharge, on patients' performance of 6-minute walking test (6-MWT), clinical outcomes [death, cardiac-related admission (CRA) and length of stay (LoS) in hospital], medication adherence, HRQoL, and psychological status (depression and anxiety). Data collection was carried out at baseline, at 4 weeks (programme end) and 3 months (study end) after hospital discharge. Inferential statistics including independent t-test, paired t-test, Chi-square test, Fisher's exact test, the Mann-Whitney U test, and the Generalized Estimating Equation model, were used to compare the baseline and various outcome variables within and between groups. / Results: According to the results of phase I, the questionnaire entitled "Heart Failure Patient Learning Needs Inventory" is valid and reliable to measure learning needs among Chinese HF population. Based on the information needs identified in phase I and II, infonnation about HF regarding definition, symptoms, risk factors, classification, treatment strategies, and self-management strategies such as weight and symptoms monitoring, low-salt diet, medication compliance, exercise, and emotion management was included in the booklet. The accuracy, readability, and applicability of the booklet were established by an expert panel and potential users. / With regard to the effectiveness of the HFDMP on patients' outcomes, patients in the experimental group showed greater improvement through the study period than those in control group in the following aspects: a significantly better medication adherence (p < 0.001) as measured by the Chinese version of the Morisky Medication Adherence Scale, a significantly better HRQoL (p < 0.001) as assessed by the Chinese version of the Minnesota Living with Heart Failure Questionnaire, and a significantly greater reduction in depression and anxiety (p < 0.001) as assessed by the Chinese version of the Hospital Anxiety and Depression Scale. However, effectiveness of the programme on patients' 6-MWT, death, CRA, and LoS were not confirmed in the present study. / Yu, Mingming. / Adviser: Sek Ying Chair. / Source: Dissertation Abstracts International, Volume: 73-06, Section: B, page: . / Thesis (Ph.D.)--Chinese University of Hong Kong, 2011. / Includes bibliographical references (leaves 267-310). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Electronic reproduction. [Ann Arbor, MI] : ProQuest Information and Learning, [201-] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract and appendix also in Chinese.

Wong, Mei Fung Florence. / Thesis (D.Nurs.)--Chinese University of Hong Kong, 2013. / Includes bibliographical references (leaves 178-208). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese.

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

published_or_final_version / Social Work / Master / Master of Social Sciences

張鳳愛. / 論文(社會工作碩士) -- 香港中文大學硏究院社會工作學部, 1996. / 參考文献 : leaves 113-121. / Zhang Feng'ai. / 鳴謝 --- p.i / 論文提要 --- p.iii / 目錄 --- p.v / 表目錄 --- p.vii / 緖論 --- p.1 / Chapter 第一章 --- 文獻探討 --- p.6 / Chapter 第一節 --- 生活滿足感 --- p.6 / Chapter 一、 --- 生活滿足感的定義 --- p.6 / Chapter 二、 --- 生活滿足感的因素 --- p.9 / Chapter 第二節 --- 閒暇 / Chapter 一、 --- 閒暇的定義 --- p.18 / Chapter 二、 --- 閒暇對老人的重要 --- p.21 / Chapter 三、 --- 閒暇活動參與與老人生活滿足感的關係 --- p.27 / Chapter 第三節 --- 健康 --- p.36 / Chapter 一、 --- 健康的定義 --- p.36 / Chapter 二、 --- 健康與老人生活滿足感的關係 --- p.39 / Chapter 第四節 --- 健康及閒暇活動與老人生活滿足感的關係 --- p.42 / Chapter 一、 --- 撤離理論 --- p.43 / Chapter 二、 --- 活躍理論 --- p.46 / Chapter 第二章 --- 理論架構 --- p.51 / 以活躍理論爲基礎探求健康及閒暇活動參與 與生活滿足感之關係 / Chapter 第三章 --- 硏究方法 --- p.58 / Chapter 第一節 --- 操作性定義 --- p.58 / Chapter 一、 --- 生活滿足感 --- p.58 / Chapter 二、 --- 健康 --- p.58 / Chapter 三、 --- 閒暇活動 --- p.60 / Chapter 四、 --- 閒暇活動參與 --- p.60 / Chapter 第二節 --- 研究問題 --- p.61 / Chapter 第三節 --- 研究對象及抽樣範疇 --- p.61 / Chapter 第四節 --- 資料搜集程序 --- p.63 / Chapter 第五節 --- 硏究工具 --- p.65 / Chapter 一、 --- 生活滿足感指標簡表 --- p.66 / Chapter 二、 --- 閒暇參與量表 --- p.66 / Chapter 三、 --- 健康量表 --- p.66 / Chapter 第四章 --- 硏究結果與討論 --- p.68 / Chapter 第一節 --- 資料分析與討論 --- p.68 / Chapter 第二節 --- 硏究結果摘要 --- p.82 / 附表樣本所得的資料分析表 --- p.86 / Chapter 第五章 --- 建議及限制 --- p.97 / 結論 --- p.109 / 註釋 --- p.112 / 參考書目 --- p.113 / 附錄問卷：老人生活滿足感與健康及閒暇活動參與之關係 --- p.122

精神分裂症（簡稱精分）是一種常見且嚴重的精神疾病，它對患者及其家人的生活有著毀滅性的影響。在西方國家，研究者已經對精分患者子女的經歷研究了許多年，得出的結論在政府以及社會工作者幫助這些家庭時起到重要的參考作用。然而，在中國這個問題被忽視了，目前針對這個群體的、學術規範的研究還沒有在中國大陸展開。鑒於中西巨大的社會和文化差異，我們不可以照搬西方學者的研究成果。為了填補這方面的知識空缺，我們在上海展開了對精神分裂症患者子女經歷的質化研究。 / 本文的資料來自八個家庭的成員對於相關經驗的敘述。我們從三個層面來探究這些青少年的特殊經歷，包括他們對家長的經歷、他們從患病與健康家長處感受到的養育模式、以及他們所經歷的擴展家庭和社會的支持。 / 我們的研究發現包括：1）青少年對家長疾病的適應經歷了三個階段：漠然、焦慮、消極應對。2）患病家長大多對孩子溫暖有餘、管教不足。健康家長對孩子的管教很大程度上取決於家庭經濟情況。當經濟情況惡劣時他們往往忽視孩子的成長需求3）支援系統作用缺失。 / 基於以上發現，本文提煉出三個主題：在惡劣成長環境中掙扎、消極應對、缺乏支持。我們提倡為這些家庭提供社會服務。 / Schizophrenia is a serious and common mental illness which has devastating effects on those affected by schizophrenia, as well as family members including their offspring. In western countries, the topic about the experience of offspring living with a parent diagnosed with schizophrenia has been studied for many years. The outcomes are useful references to the government and social workers in helping these families. However, this topic has been neglected in the Chinese context. A well-designed qualitative study has never been carried out in mainland China. The result from western researcher cannot be used in China due to the vast differences in society and culture. To fill in the gap, a qualitative research was carried out in Shanghai to study children’s experience of parental schizophrenia. / This paper is based on the narratives elicited from eight families, including the parents diagnosed with schizophrenia, the adolescent children, and sometimes other family members. We studied the experience of this special group of adolescents, which contains the experience of their parent’s mental illness, the parenting from both the parent diagnosed with schizophrenia and the healthy parent, as well as the support from extended family and the society. / Our findings include: 1) Adolescents’ attitude towards parental schizophrenia can be divided into three phases: indifference, anxiety, and finally passive coping. The help they can provide for their parents with schizophrenia is very limited in most cases. 2) The parenting they received from the parents with schizophrenia is generally perceived as with high level of warmth and low level of demandingness. The healthy parents may or may not provide enough discipline to the adolescents depending on the families’ economic status. They would fail to focus on the need of the growing children when the economic pressure is high. 3) The supportive network failed to provide enough help to the growing adolescents. / Three themes are proposed based on the findings, namely struggling in poor growing environment, passive coping, and helplessness. We advocate for the development of social work services for these families. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Du, Juan. / Thesis (M.Phil.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references (leaves 264-302). / Abstracts also in Chinese; appendixes in Chinese. / Chapter Chapter 1 --- : Introduction --- p.1 / Chapter 1.1 --- Rationale of the study --- p.1 / Chapter 1.2 --- Research background --- p.3 / Chapter 1.2.1 --- Schizophrenia in China --- p.5 / Chapter 1.2.2 --- Social stigma and discourse on mental illness --- p.6 / Chapter 1.2.3 --- Great challenges for a family with a member with schizophrenia --- p.9 / Chapter 1.2.4 --- Limited mental health service available to these families --- p.11 / Chapter 1.2.5 --- Cultural influences in Chinese society --- p.14 / Chapter 1.3 --- Research objectives and research questions --- p.18 / Chapter 1.3.1 --- Research questions --- p.18 / Chapter 1.3.2 --- Research objectives --- p.19 / Chapter 1.4 --- Significance of the research --- p.20 / Chapter Chapter 2 --- : Literature Review --- p.21 / Chapter 2.1 --- Schizophrenia --- p.21 / Chapter 2.1.1 --- Different perspectives on schizophrenia --- p.21 / Chapter 2.1.2 --- Treatment and Recovery of schizophrenia --- p.33 / Chapter 2.1.3 --- Schizophrenia’s influence on social functioning --- p.37 / Chapter 2.1.4 --- Schizophrenia’s influence on parenting --- p.39 / Chapter 2.2 --- Developing adolescents --- p.46 / Chapter 2.2.1 --- Different perspectives on adolescents --- p.47 / Chapter 2.2.2 --- Offspring with parental psychiatric disorder --- p.53 / Chapter 2.2.3 --- Supportive network of adolescents --- p.60 / Chapter 2.3 --- The roles of social work in mental health facilities --- p.61 / Chapter 2.3.1 --- Condition of mental health social work in Shanghai --- p.62 / Chapter 2.3.2 --- The roles of social workers in other areas --- p.63 / Chapter 2.3.3 --- Social workers serving families with parental schizophrenia --- p.69 / Chapter 2.4 --- Knowledge gap in existed literature --- p.70 / Chapter Chapter 3 --- : Research Methodology --- p.72 / Chapter 3.1 --- Paradigmatic Considerations --- p.72 / Chapter 3.1.1 --- Social constructionism --- p.74 / Chapter 3.1.2 --- Proposed Theoretical Framework --- p.77 / Chapter 3.2 --- Research Design --- p.79 / Chapter 3.2.1 --- Research Site --- p.80 / Chapter 3.2.2 --- Sampling --- p.81 / Chapter 3.2.3 --- Data collection --- p.86 / Chapter 3.2.4 --- Data analysis --- p.89 / Chapter 3.2.5 --- Ethical issues and trustworthiness --- p.91 / Chapter 3.3 --- Strengths and Limitations of this Study --- p.96 / Chapter Chapter 4 --- : Background Information of the Research Participants --- p.98 / Chapter 4.1 --- General Information --- p.98 / Chapter 4.1.1 --- Personal information of adolescents --- p.99 / Chapter 4.1.2 --- Personal Information of parent diagnosed with schizophrenia --- p.101 / Chapter 4.1.3 --- Background Information of participant families --- p.105 / Chapter 4.2 --- Family stories --- p.111 / Chapter 4.3 --- Conditions of the parent with schizophrenia --- p.126 / Chapter 4.3.1 --- Competent youths in the past --- p.126 / Chapter 4.3.2 --- Experience of schizophrenia --- p.127 / Chapter 4.3.3 --- Self-blaming for offspring’s current situation --- p.139 / Chapter 4.4 --- The adolescents --- p.141 / Chapter 4.4.1 --- School Achievement --- p.141 / Chapter 4.4.2 --- Peers --- p.146 / Chapter 4.5 --- Summary --- p.150 / Chapter Chapter 5 --- : Experience of parental schizophrenia --- p.152 / Chapter 5.1 --- Discovery of parental schizophrenia --- p.152 / Chapter 5.2 --- Experience relevant to parental schizophrenia --- p.155 / Chapter 5.2.1 --- Symptoms --- p.155 / Chapter 5.2.2 --- Deterioration of parent’s daily functioning --- p.157 / Chapter 5.2.3 --- Parents’ hospitalization --- p.161 / Chapter 5.2.4 --- Social stigma attached to schizophrenia --- p.166 / Chapter 5.2.5 --- Parent’s concealment of schizophrenia --- p.168 / Chapter 5.3 --- Knowledge of schizophrenia --- p.170 / Chapter 5.4 --- Reaction after knowing parental schizophrenia --- p.174 / Chapter 5.4.1 --- Indifference --- p.174 / Chapter 5.4.2 --- Concern and curiosity --- p.175 / Chapter 5.4.3 --- Passive attitude --- p.179 / Chapter 5.5 --- Coping with parental schizophrenia --- p.182 / Chapter 5.5.1 --- Support and help from the children to the parents with schizophrenia --- p.182 / Chapter 5.5.2 --- Selective concealment of parental schizophrenia --- p.185 / Chapter Chapter 6 --- : Experience of parenting from the parent with schizophrenia --- p.189 / Chapter 6.1 --- Less parental demandingness from the parent with schizophrenia --- p.189 / Chapter 6.1.1 --- Less discipline --- p.190 / Chapter 6.1.2 --- Low pressure on study --- p.191 / Chapter 6.1.3 --- Low expectation for future career --- p.192 / Chapter 6.2 --- More parental warmth from the parent with schizophrenia --- p.195 / Chapter Chapter 7 --- : Supporting Network --- p.197 / Chapter 7.1 --- Interaction between adolescent children with healthy parents --- p.197 / Chapter 7.1.1 --- The condition of the healthy parents --- p.198 / Chapter 7.1.2 --- The parenting style of the healthy parents --- p.203 / Chapter 7.2 --- Support from extended family --- p.207 / Chapter 7.3 --- Support from the society --- p.214 / Chapter 7.3.1 --- Teaching VS. Support --- p.214 / Chapter 7.3.2 --- Little support from school --- p.216 / Chapter Chapter 8 --- : Discussion --- p.219 / Chapter 8.1 --- Parenting style of both parents --- p.219 / Chapter 8.1.1 --- Indulgent parenting of the parent diagnosed with schizophrenia --- p.219 / Chapter 8.1.2 --- The parenting style of the healthy parent --- p.222 / Chapter 8.1.3 --- The influence of the parenting on the developing children --- p.225 / Chapter 8.2 --- Three stages after knowing parental schizophrenia --- p.227 / Chapter 8.3 --- Themes --- p.233 / Chapter 8.3.1 --- Struggle in poor family environment --- p.233 / Chapter 8.3.2 --- Passive coping --- p.239 / Chapter 8.3.3 --- Helplessness --- p.241 / Chapter 8.4 --- Reflection on theoretical framework --- p.244 / Chapter 8.5 --- Implications for practice --- p.247 / Chapter 8.6 --- Implications for theory and research --- p.255 / Chapter 8.6.1 --- Similarities and differences compared with literature --- p.255 / Chapter 8.6.2 --- Directions for future research --- p.257 / List of tables and figures / Chapter Table 1 Length of interviews --- p.89 / Chapter Table 2 Condition of adolescents --- p.99 / Chapter Table 3 Personal information of the parents with schizophrenia --- p.101 / Chapter Table 4 Symptoms and hospitalization --- p.102 / Chapter Table 5 Medication --- p.104 / Chapter Table 6 General family background --- p.105 / Chapter Table 7 Family social economic status --- p.108 / Chapter Table 8 Possible interventions --- p.250 / Chapter Figure 1 Proposed theoretical framework --- p.77 / Chapter Figure 2 Revised theoretical framework --- p.245 / Chapter Appendices --- p.259 / Chapter Appendix 1: Interview Guide (Chinese version) --- p.259 / Chapter Appendix 2: Consent form (Chinese version) --- p.262 / Bibliography --- p.264

駱炳平. / 論文(社會工作碩士) -- 香港中文大學硏究院社會工作學部, 1996. / 參考文献 : leaves 86-93. / Luo Bingping. / 致謝 --- p.I / 論文摘要 --- p.II / Chapter 第一章 --- 緒論 --- p.1 / Chapter 第一節 --- 硏究動機 --- p.1 / Chapter 第二節 --- 硏究目的 --- p.4 / Chapter 第二章 --- 相關文獻探討 --- p.5 / Chapter 第一節 --- 老年人的意義 --- p.5 / Chapter 第二節 --- 老人中心服務 --- p.9 / Chapter 第三節 --- 休閒的意義及功能 --- p.10 / Chapter 第四節 --- 休閒活動對老年人之重要性-活動理論 --- p.15 / Chapter 第五節 --- 老年人參與休閒活動的類型 --- p.18 / Chapter 第六節 --- 生活質素的意義 --- p.20 / Chapter 第三章 --- 理論架構 --- p.24 / Chapter 第一節 --- 理論模式 --- p.24 / Chapter 第三節 --- 基本假設 --- p.26 / Chapter 第三節 --- 硏究變項之名詞操作性定義 --- p.27 / Chapter 第四章 --- 硏究方法 --- p.29 / Chapter 第一節 --- 調查設計 --- p.29 / Chapter 第二節 --- 抽樣方法 --- p.29 / Chapter 第三節 --- 調查工具 --- p.31 / Chapter 第四節 --- 統計分析 --- p.37 / Chapter 第五章 --- 調查結果 --- p.39 / Chapter 第一節 --- 個人資料、休閒活動參與、休閒活動滿足感 及生活質素的情況 --- p.39 / Chapter 第二節 --- 個人變項與休閒活動參與及生活質素關係 --- p.59 / Chapter 第三節 --- 硏究假設的檢定 --- p.70 / Chapter 第六章 --- 結論、檢討及建議 --- p.77 / Chapter 第一節 --- 結論 --- p.77 / Chapter 第二節 --- 檢討 --- p.80 / Chapter 第三節 --- 建議 --- p.81 / Chapter 第七章 --- 社會工作實務的應用 --- p.83 / 參考書目 --- p.86 / 〔附錄一〕老年人休閒活動及生活質素調查問卷 --- p.94 / 〔附錄二〕休閒活動滿足感尺度 --- p.102 / 〔附錄三〕生活滿足感指數A --- p.105 / 〔附錄四〕情感平衡尺度 --- p.107 / 〔附錄五〕費城老人病學生活衝勁尺度 --- p.108