published_or_final_version / Medical Sciences / Master / Master of Medical Sciences

published_or_final_version / Public Health / Master / Master of Public Health

Introduction Rheumatic disease is an autoimmune disorder with an unpredictable course of exacerbation and remission. There is no known cure for the disease at the moment. The patients’ conditions may progressively deteriorate despite intensive therapies, and runs an erratic course with the possibility of disfiguration and alteration in body image. Pain, disabilities and psychological distress are common. Rheumatic patients may respond differently to the same level of pain and physical symptoms. The understanding of the needs of rheumatic patients and how they successfully manage the disease and optimize psychological adjustment can help develop effective psychosocial interventions. Aims The aims of the study are (1) to identify the needs of rheumatic patients and perceptions of their disease, (2) to develop a conceptual framework for psychological adjustment, and (3) to identify factors associated with resilience in rheumatic patients. Methods The present study consisted of two phases. The first phase was a focus group interview, aiming to understand the patients’ feelings and to design a questionnaire. The second phase was a prospective questionnaire survey that includes a baseline study and a six-month follow-up study. Patients were recruited from support groups in Hong Kong. The baseline questionnaire was self-administrated, and the follow-up questionnaire was administrated by telephone interview. The self-regulation model was chosen as the basis for the conceptual framework for psychological adjustment. The questionnaire included demographics, illness representation, coping efforts, appraisal of coping efforts, sense of coherence, quality of care, functional disability, and health-related quality of life. The outcome measures were functional and psychological health, change in adjustment, and positive and negative resilience. Results Having a good and caring doctor, more information on the disease, and public understanding of the disease were the needs of rheumatic patients. The patients perceived that the disease was chronic, cyclical, and had poor consequences. They perceived that the disease caused great pain, stress, depression and anxiety, and affected their daily activities, appearance, and relationship with family and friends. Poor adjustment was associated with chronic and cyclical timeline, and poor perception of personal and treatment control. The analysis of resilience shows that positive perception of treatment control and disease consequence, correct understanding of disease causes, and high sense of own value and importance to the society, were protective. While those who lacked family support and blamed themselves or their families to be the cause of disease, were vulnerable. Discussion and conclusions The present study lends support to the validity of self-regulation model in psychological adjustment to disease, but coping efforts could only partially mediate the relationship of illness representation to appraisal of coping efforts, implying that the coping style might not sufficiently capture the underlying differences in individual coping styles. An effective psychosocial intervention can be developed based on the factors associated with better adjustment and resilience, and targeted at non-working older patients with rheumatoid arthritis. Last but not least, support from the community, and public understanding of the disease are important for rheumatic patients. / published_or_final_version / Psychiatry / Doctoral / Doctor of Philosophy

Introduction: The connection between self and psychosis has been qualitatively noted for centuries, but left relatively neglected in the field of quantitative psychology research. Some targeted studies have shown that self-concept is different in patients with psychosis than healthy volunteers. Studies of individuals have established a specific relationship between distortions of self and the content of delusions. Recent studies have begun to collect evidence of changes of self in the early stages of psychosis. Research suggests that delusions and self-concept have various shared cognitive mechanisms and neuroanatomy, particularly with respect to persecutory delusions. Changes in self-concept are apparent in persons at ultra high risk for developing psychosis, suggesting that it precedes specific symptomatology and could be at the root of delusion formation. Therefore, we identify where the two domains intersect while overcoming the limitations of past studies such as considering only persecutory delusions, minimally defining self, and including patients with a wide range of diagnoses. Methods: We consider delusions and self-concept in a patient group, consisting of 22 persons with first-episode schizophrenia spectrum disorders, and a group of 22 healthy volunteers. Delusional ideation is measured through the Peters et al Delusion Inventory (PDI) which derives a total, three subscores- Distress, Preoccupation, Conviction- and seven factor scores based on delusion content. Self-concept is quantified using hierarchical classification (HICLAS) analysis which generates numeric and visual outputs. It is important to specify that self is a deceivingly broad topic of which we will focus on the trait level- that is, which adjectives individuals use to describe their selves and others who are close to them. In addition to PDI and HICLAS evaluations, patients undergo clinical diagnoses and symptom ratings. Results: While there was no diagnostic group difference in the PDI total or subscores, patients had more delusional ideation with respect to three types of content, as determined by the factor scores. HICLAS did not show group differences. However, patients and controls had different relationships between PDI and HICLAS measures, with patients showing a greater overall connection between the two domains. The specific results are discussed, including two qualitative case studies. Conclusion: We conclude that the relationship between self-concept and schizophrenia is specific to delusions rather than general symptomatology. Relationships are drawn between the cognitive theories underlying each domain. The findings are important to theoretical understandings of self and delusions. Furthermore, it is hoped that advanced understanding of these topics can likely lead to new, targeted psychotherapeutic treatment approaches. / published_or_final_version / Psychiatry / Master / Master of Philosophy

Background: Stroke has become the second most cause of death and leading cause of disability worldwide. Patients-reported health related quality of life measures are often used in evaluating stroke outcomes. However, many stroke patients can not participate in the outcome assessments due to severe disability or aphasia or cognitive impairment. In this case, proxy respondents can be used as secondary information sources. The principle thing needs to be paid attention to in using proxy’s assessments is the reliability or agreement between patient and proxy. Western studies have shown that the agreement between patient and proxy was moderate to substantial. However, such studies are limited in China. Simply applying overseas research outcomes on local population is not appropriate. Therefore, we conducted this study to find out the agreement between stroke patients and proxy assessments about quality of life in China. Methods: 100 patient-proxy pairs were enrolled in our study. Our study was a hospital-based study. The included patients were 3 months after stroke, and patients with more than moderate aphasia or cognitive impairment were excluded. Proxies were people who knew the patients > 1 year, contacted with the patients ≥ 3 days per week, were responsible for ≥ 2 caregiving tasks, and ≥ 18 years. The Chinese version of Stroke-specific quality of life scale (SS-QoL) was used to assess the stroke patients’ QoL, and proxy version of SS-QoL was used in proxies’ evaluation. The evaluation process of patient and proxy was separately and concurrently. Method of self-reported combined with interview-administered was adopted. Paired t tests or Wilcoxon signed ranks tests were performed to test the systematic differences between patient and proxy. The agreement level between patient and proxy assessments on stroke QoL was estimated by Intraclass correlation coefficient (ICC). Multiple linear regression was performed to find out factors affecting the patient-proxy agreement. Results: Patients were older (61 versus 48 years) and more often male (63% versus 44%). Mean systematic differences ranged from 0.03 to 0.44. Only 3 domains of differences were statistical significant (Language, Personality, and Work/productivity). The strength of agreement between patient and proxy reporting ranged from fair to perfect (ICC: 0.31 to 0.87). Better agreement was observed in more objective domains while worse agreement was reported in more subjective domains. Proxy education was tested to be a significant predictor of the overall patient-proxy score difference, which indicated that higher proxy education level was associated with greater agreement. It was shown that higher overall patient-reported or proxy-reported SS-QoL score was associated with less stroke impairments. Factors of stroke impairments, patient/proxy education level, patient/proxy gender, and stroke type separately have significant impacts on the agreement between patient and proxy in different domains of QoL. Conclusion: Our findings indicate that proxies may provide reliable information for assessments about stroke patients’ quality of life in China. And the outcomes are more appropriate for mind to moderate stroke patients. For further studies, the reliability of proxy information about severe stroke patients should be paid attention to. Research about changes of agreement between patient and proxy along with the disease development process would be focused on. / published_or_final_version / Public Health / Master / Master of Public Health

Objective: To synthesis evidence from systematic reviews at international level to explore effective community and home based care interventions for family caregivers (FCGs), which may affect quality of life of persons with dementia (PWDs) and their FCGs in China. Methods: A systematic review of reviews was conducted. Studies were identified through Scopus, PubMed and EBSCO databases. Non-pharmacological interventions targeted on FCGs with outcome domains related to psychological health or quality of life of PWDs and/or their FCGs were within this review scope. Quality of systematic reviews was evaluated by AMSTAR. Quality of primary studies included in the systematic reviews was assessed by their internal and external validity. Results: Three systematic reviews of moderate to high quality with 74 publications were included in this systematic review. Among the primary studies, about 60% were conducted by randomized controlled design, and about 85% were carried out in high-income countries. Results at review level suggested that communication skills training, internet-based care management, coping strategy, individual behavioral management techniques were effective interventions for FCGs of PWDs. In contrast, most of the primary studies reported that community or home based interventions positively affected FCGs and/or PWDs. Those interventions included communication skills training, internet-based care management, supportive therapy, educational intervention, coping strategy, behavioral management techniques; yet the effects yielded statistically insignificant in most of the trials. In particular, significant effects of community care interventions were found in 8 of 69 trials on FCGs’ psychological health, 3 of 4 trials on FCGs’ competence, 0 of 2 trials on FCGs’ quality of life, and 3 of 7 trials on PWDs’ quality of life. Combination of those community care intervention components was observed in most of the trials with significant effects. Conclusion: Communication skills training, internet-based care management, supportive therapy, educational intervention, coping strategy, behavioral management techniques had positive effects on FCGs of PWDs living in the community. The combination among those intervention components and designing intervention model in FCG needs-oriented manner underpinned a potential significant effect. Given distinguished social economic contexts in urban and rural areas, implementation of community care interventions specific to FCGs in China should be handled with cautions and strengthened by policy supports to empower aging at home. / published_or_final_version / Public Health / Master / Master of Public Health

Dysphagia, which refers to difficulties in swallowing, is a common clinical dysfunction with high morbidity in the ageing population. At least four validated questionnaires are available for assessing swallowing-related quality of life. These include the M. D. Anderson Dysphagia Inventory (MDADI), the Swallow Quality-of-Life Questionnaire (SWAL-QOL), the Sydney Swallowing Questionnaire (SSQ) and the Dysphagia Handicap Index (DHI). However, these questionnaires are either designed for some specific dysphagic populations or only focused on the impact of swallowing disorders at the impairment level. The Swallowing Activity and Participation Profile (SAPP) has been developed and validated as a self-reported tool for dysphagic population to assess the effects of swallowing problems on the physical, functional and social aspects of quality of life. It is common to find the elderly population exhibiting cognitive impairment. Elderly people with cognitive impairment may have difficulties completing the questionnaire by themselves. In such cases, family members or caregivers are often asked to judge how the dysphagic individuals are affected by the swallowing dysfunction. There are, however, most of the previous studies failed to investigate the validity and reliability of such proxy method. Thus, the objective of this study was to verify the reliability of proxy method in assessing swallowing-related quality of life for frail elderly people who are not able to finish the self-reported questionnaire because of their cognitive impairment. Forty-six elderly individuals (24 males and 22 females) and their respective caregivers (six males and 36 females) participated in this study. All the elderly received a clinical swallowing assessment to confirm the existence and the severity of dysphagia. They were assigned into the dysphagic group and the non-dysphagic group according to the results of swallowing assessment, and then asked to complete a quality of life questionnaire (SAPP) and a swallowing function scale, called Eating Assessment Tool (EAT-10). Their caregivers were invited to complete the same assessment tasks from the perspective of the elderly and to report how they perceived the elderly persons’ swallowing–related quality of life as the proxies. The scores obtained from the questionnaires filled out by the elderly participants and their caregivers were compared. The findings showed that there was no statistically significant agreement between the elderly and the caregivers. The association between the responses of the elderly and the caregivers on quality of life was not as strong as what was hypothesized at the beginning of this study. However, the test-retest reliability of the instrument of this study was good, as shown by the intra-class correlation coefficient in the elderly group. The current study found that dysphagia had a negative impact on the dysphagic elderly’s emotional well-being, but was not clear if the proxy method could be used as a valid and reliable method for assessing the elderly’s swallowing-related quality of life. Further studies with a larger sample size and a wider range of dysphagia severity are needed. / published_or_final_version / Speech and Hearing Sciences / Master / Master of Philosophy

Patients’ perception of being a burden to others, termed self-perceived burden (SPB), is a phenomenon commonly reported by terminally-ill patients. SPB elicits psychological outcomes such as loss of dignity, hopelessness, anxiety, and depression (Wilson et al., 2005). To extend our knowledge on this understudied construct, this project employed a multi-method approach with three studies to examine the experience of SPB among Chinese cancer patients. Study 1 is the first longitudinal investigation on the relationship between SPB and non-terminal cancer patients’ trajectories of psychological adjustment. Results from hierarchical linear modeling showed that patients with higher levels of SPB reported higher levels of depression and anxiety, as well as lower levels of mental health over time. Results also revealed that SPB predicted cancer patients’ pattern of change in anxiety over time. As the high SPB group had a higher anxiety level at baseline, their anxiety level remained higher than that of the low SPB group despite a sharper decrease. Study 2 is the first quantitative study to scrutinize the psychological process of how cancer patients attempted to cope with SPB. A new Self-perceived Burden Coping Scale was developed. Our findings indicated that the scale displayed good content, construct, and discriminant validities, and most subscales show acceptable reliability. Results from principal components analysis showed that cancer patients adopted six coping modes in an attempt to deal with SPB: (a) positive outlook, (b) managing the needs of others, (c) resigned acceptance, (d) making preparations, (e) entitlement, and (f) concealing need. Specially, the coping modes of resigned acceptance and concealing need were related to poorer adjustment, whereas managing the needs of others and entitlement were related to better adjustment. Stress-buffering effects of managing the needs of others and making preparations were also found. Finally, Study 3 adopted a qualitative paradigm to explore perception as care-receivers, aspects of SPB, and coping with SPB among Chinese non-terminal cancer patients. Narratives from patients revealed four perspectives regarding to their perception as care-receivers: self-reliance, acceptance, overwhelming, and SPB. Results revealed that the SPB experience among Chinese non-terminal cancer patients was similar to those observed in Western terminal cancer patients, with a new aspect of financial burden. In addition to the six coping modes of SPB found in Study 2, a potential new coping mode of being compliant with others was found, which may be unique among Chinese cancer patients in the context of SPB. Findings from these studies may advance our knowledge on SPB, provide insights for future research, as well as shed lights on the development of counseling services, psychological interventions, and public policies for cancer patients. / published_or_final_version / Psychology / Doctoral / Doctor of Philosophy

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published_or_final_version / Transport Policy and Planning / Master / Master of Arts in Transport Policy and Planning