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

published_or_final_version / Medical Sciences / Master / Master of Medical Sciences

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

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

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

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

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