Disengagement from mental health services by patients with schizophrenia spectrum disorders is an important issue. Most research in this area has been focused on studying the patients’ demographic and clinical characteristics that may be related to disengagement. However, research on patients’ perspective in regard to their decision of disengagement has been limited. An assessment tool developed based on an in--‐‑depth understanding of patients’ subjective experiences may capture other crucial factors. This may widen our scope of understanding of this phenomenon. Therefore, a mixed research method was employed in this thesis and three independent studies with distinctive research aims were carried out. The first study was a qualitative study which aimed at exploring reasons and factors that patients perceived influential to their decision of disengagement. Six ever--disengaged male patients aged between 18 and 28 with schizophrenia spectrum disorder were interviewed as a purposive sample after a thorough subject identification procedure. A thematic analysis of the data yielded seven themes which grouped into three domains: service (patient--‐‑clinician communication, service orientation, clinic operation); patient (psychological response, perception of illness); and medication (side effects and uncertain efficacy). A 16--‐‑item self--‐‑administered questionnaire, the Patient’s Perception of Psychiatric Service (PPPS) questionnaire, was developed. The construction of PPPS was based entirely on the themes identified from the first qualitative study. This questionnaire measured the subjective perception of the patient about the service and patient--clinician communication. Validation of the PPPS questionnaire was conducted in the second study by recruiting 50 patients with a diagnosis of a schizophrenia spectrum disorder from a psychiatric outpatient clinic. Results demonstrated that the PPPS questionnaire has good internal consistency, test-retest reliability, and convergent validity. The Singh O'ʹBrien Level of Engagement Scale (SOLES), Client Satisfaction Questionnaire (CSQ), and an internalized stigma scale were also translated and validated in this study for use in the third study. The third study explored the relationship between disengagement and the patient’s perception of service, using PPPS, level of engagement (SOLE), satisfaction with service (CSQ), and other factors including clinical characteristics and service utilization. One hundred and fifty patients with schizophrenia spectrum disorder were recruited from two specialized outpatient clinics. In view of local clinical observation, patients who had more than one disengagement episode and each lasted more than two weeks were classified into the severe--‐‑disengagement group. In a forward stepwise regression model, results suggested that PPPS and length of service predict severe disengagement. In this thesis, the use of mixed study methods showed that it was pertinent to incorporate patients’ first person experience into an assessment tool. Measuring patients’ perception of service, by using PPPS, can effectively identify patients with severe disengagement history. PPPS as a patient--‐‑rated self--‐‑administered questionnaire can be used in clinical settings to enhance the understanding of a patient’s appraisal of the service and thus proactive measures can be taken to reduce service disengagement. / published_or_final_version / Psychiatry / Master / Master of Philosophy

published_or_final_version / abstract / toc / Clinical Psychology / Master / Master of Social Sciences

published_or_final_version / abstract / toc / Social Work and Social Administration / Doctoral / Doctor of Philosophy

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