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dc.contributor.authorStephens, Moira
dc.date.accessioned2013-01-07
dc.date.available2013-01-07
dc.date.issued2013-01-07
dc.identifier.urihttp://hdl.handle.net/2123/8859
dc.descriptionDoctor of Philosophy(PhD)en_AU
dc.description.abstractThis thesis aims to provide a rich, empirically grounded understanding of what it is like to live with myeloma after the first relapse, in ‘the era of novel agents’. This was achieved by exploring the experience of both the person with myeloma and that of their primary support person though an analysis of their narratives. Consistent with the principles of qualitative enquiry, this study aimed to produce findings that were descriptive, exploratory and explanatory in nature. Qualitative methods were used, involving an inductively-driven analysis of a series of in-depth interviews conducted at six to twelve month intervals. Data sources consisted of 47 indepth open-ended interviews with ten dyads of a patient and their primary support person, and an additional single participant. Analysis was undertaken using the key attributes of Grounded Theory methods: constant comparison of the data and theoretical coding. As new categories and concepts were developed through inductive analysis, they were further explored in relevant literature from philosophy, sociology and the humanities so that understanding of the experience of living with myeloma was continually and iteratively informed by existing literature. This research shows that the overall experience of living with myeloma was a complex and arduous struggle. Participants said that ‘having myeloma is hard’, because the effects of myeloma permeated every facet of their lives. Living with myeloma consisted of three key elements: 1) the arduous nature of myeloma; 2) the work of myeloma; and 3) the temporal landscape of myeloma. Living with myeloma required participants to construct a ‘new normal’. This demanded adjustment at first, but participants learned to ‘get on with it’ over time and with experience. The new normal included activities which were focused on managing the symptoms of myeloma. Some required effort and planning and some became taken for granted everyday activities. v I developed an interpretation of these findings through engagement with philosophical and sociological theory. This theory helped me understand that participants described coming to tolerate and live within changed conditions. The process of creating a new normal demanded a great deal of effort including new/different ways of understanding time, normality, and health. The symptoms that participants described were intrusive and initially demanded a great deal of attention and work. Over time, these symptoms became integral components in their lives and they consistently talked about ‘getting on with it’, living with the arduous yet everyday experiences associated with myeloma. I came to conceptualise the way people lived with myeloma as ‘living on.’ This was a dynamic process rather than a state. Participants responded to many changes over time such as multiple relapses, complications of and responses to treatment and hopes for remission, all of which were part and parcel of living and dying with myeloma. Over time, these changes to their environment became part of the everyday fabric of their lives. I use Bourdieu’s concept of habitus to explain how living with myeloma became normal or ‘second nature’. The concept of ‘living on’ denotes that the complexity and effort demanded by living with myeloma became second nature and thus a normal state of affairs. Myeloma is many things; it is a medical problem; it is a social problem; and for those who have it, it is part of everyday life. Interpreted through the lens of Bourdieu’s conceptual tools, the stories of the participants reveal how people managed to live with something that was, at the outset, a catastrophic experience but which over time became a part of everyday life. This study has illustrated the complexity and work that is required to live everyday with myeloma as a normal state of affairs. Living on is a process that demands effort and different ways of understanding time, normality and health.en_AU
dc.publisherUniversity of Sydney.
dc.publisherSydney Medical Schoolen_AU
dc.rightsThe author retains copyright of this thesis.
dc.subjectQualitativeen_AU
dc.subjectGrounded theoryen_AU
dc.subjectillness experienceen_AU
dc.subjectmultiple myelomaen_AU
dc.subjectcanceren_AU
dc.subjecthabitusen_AU
dc.subjectBourdieuen_AU
dc.titleLiving on: A qualitative study of the experience of living with multiple myelomaen_AU
dc.typePhD Doctorateen_AU
dc.date.valid2012-01-01en_AU


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