Nonmalignant respiratory diseases (NMRD), such as Chronic Obstructive Pulmonary Disease (COPD), are a leading cause of morbidity worldwide. Research has shown that patients with NMRD in the UK, Canada and the US have less access to palliative care services than patients with other respiratory diseases such as lung cancer. Discussing preferences for end-of-life care in NMRD can be difficult for patients, carers and health professionals, however it is essential to ensure that the patient’s wishes are met, particularly when resources are scarce. Despite similar nationalised health care systems in the UK and Canada, a recent report by the Economist Intelligence Unit ranked overall quality of end-of- life care in the UK first out of forty, while Canada was ranked ninth out of forty. Therefore, it was deemed useful to investigate how end-of-life for people with NMRD is discussed between health professionals and patients in the UK and Canada and to develop an instrument allowing health professionals to determine constraints and opportunities for facilitating such discussions in each country as comparing care between countries is helpful to determine the best solutions for individuals and families with complex needs. This study was guided by the Medical Research Council guidelines for developing and implementing complex interventions, and the research process followed the requirements for the development phase of these guidelines. First, two systematic reviews were carried out to establish the evidence base regarding of end-of-life discussions. The first focused on how end-of-life is discussed in NMRD, while the second focused exclusively on end-of-life discussions in a single NMRD (COPD) in the UK and Canada only. The findings of the systematic reviews pointed toward the need for further training of health professionals to iii discuss end-of-life with this patient group, as well as the lack indicators that this patient group is ready or willing to discuss end-of-life. Then, a Delphi study was conducted with specialist respiratory nurses in the UK to determine expert opinion on how health professionals know a patient with NMRD is ready to discuss end-of-life, and to establish the key considerations and topics in such discussions. This study was replicated in Canada with health professionals working with patients with NMRD. Each Delphi study resulted in a country specific tool to assist less experienced health professionals discuss end-of-life with this patient group. Finally, the findings of these Delphi studies were compared to determine what health professionals in each country could learn from each other, as well as specific considerations in each country, and areas for future research. The findings from the comparison process demonstrated that the emotional intelligence of health professionals, the patient education context and the recognition of cultural issues were all important factors when approaching end-of-life discussions. Findings from each phase of the intervention development process resulted in a theoretical model of how end-of-life is discussed in the UK and Canada. This model identifies constraints and opportunities for such discussions from a systems level perspective including: end-of-life policies, prognosis in non-malignant respiratory disease, time, clinical indicators, initiation responsibility, the educational role of health professionals, emotional intelligence, cultural competence and readiness versus willingness to discuss end-of-life. Recommendations are made from the findings of this study for research, clinical practice, education and policy. A detailed plan for the next stage of the development of the intervention is included.

The objectives of this thesis were to explore the effects of receptive individualised live and recorded-music on interactions within participating dyads consisting of a person with dementia who was in their final phase of life (resident), and a person with whom he or she shared a close connection (carer), as well as on each individual participant. A 'Receptive' music intervention is one where participants are not required to do anything but listen. METHODS The conceptual frameworks of realist evaluation, ethnography, symbolic interactionism, and dramaturgical actionism influenced the design of this study. There were two phases: during phase-1, fifteen semi-structured interviews were conducted with 'key-consultants', who were specialists in topics related to this thesis, to inform the design of 'phase-2'. During 'phase-2', musical interventions were conducted at five non-NHS care homes in Scotland over a period of nine-months. Each intervention consisted of either individualised live-music (3 sessions) or the same or similar music pre-recorded (three sessions); all music was played by the researcher on the solo cello. Interventions took place in residents' private bedrooms, and lasted between fifteen and seventy-minutes. The order of live and recorded-music interventions was switched for approximately half the dyads. Each intervention was video-recorded for later observation. Semi-structured interviews and Visual Analogue Scales (VAS) were administered with each participating carer before and after the conclusion of their series of interventions, to compare their expectations with their actual experiences and to better understand their experience. Whenever possible, key-staff and managers were also interviewed to learn what their perceptions of this study had been: its effects on them and on participants. ANALYSIS required repeated visits to the raw data: beginning with thickly-describing all video-footage; then thematically coding all thick-descriptions and transcribed audio-interviews; and lastly revisiting all video-footage via a self-modified version of an evaluative observation instrument; 'Person Interaction Environment Care Experience in Dementia' (PIECE-dem). FINDINGS support prior research regarding the beneficial effects of individualised receptive music on listeners who have dementia. This study suggests that both live and recorded-music promote wellbeing, and enhance dyad interaction in the moment of listening. These findings demonstrate the potential for receptive music to create an embodied sense of 'haven' for people with dementia who are nearing the end of life and for those sharing the experience with them: by capturing and holding their attention, and transporting them either back in time, or entirely out of time into a state of 'flow', or into an 'intense musical experience'.

<p><strong>Background:</strong> The objective of this mixed methods study is to understand, from the perspectives of seriously ill hospitalized patients, the effect of modifiable physician behaviours on the perceived quality of end-of-life and ACP communication. <strong></strong></p> <p><strong>Methods:</strong> A convergent parallel mixed methods design is used. Participants were recruited from inpatient medical wards at two academic hospitals, and a population with a high risk of mortality at 6-12 months was selected. In the quantitative strand, a questionnaire was administered to measure patients’ self-rated satisfaction with their physician’s ACP communication skills. The primary analysis involved calculation of the strength of correlation between individual QOC items and a global satisfaction score. In the qualitative strand, interpretive description methods were used to explore seriously ill patients’ perceptions of the quality of ACP communication with their physicians. The mixed methods analysis phase involved the creation of a merged analysis table.</p> <p><strong>Results: </strong>From the quantitative strand, three priority behaviours pertained to eye contact, providing full attention, and listening. The three major qualitative themes related to nonverbal behaviours; situating a patient in the context of their background, family and social roles; and assisting patients to make the challenging end-of-life transition. The merged analysis allowed for a fuller, contextualized understanding of why the QOC items with the strongest correlation measures were important from a patient perspective.</p> <p><strong>Conclusions:</strong> This mixed methods study is well-positioned to understand, holistically and from the patient perspective, physician behaviours that influence quality of communication at the end of life.</p> / Master of Science (MSc)