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    Storying meaning in hospice patient biographies : a thesis submitted to Massey University of Palmerston North in partial fulfilment of the requirements for the degree of Masters of Arts and Psychology
    (Massey University, 1998) Hansen, Susan
    The importance of meaning in life has been emphasised in the writings of many existentialists. Furthermore, serious repercussions have been associated with loss of meaning. Postulated life-enhancing qualities of discovering meaning in life make this an especially critical issue for the dying. A sense of meaning in late-stage disease is an important focus for therapeutic exchange. A notable method which has been shown to facilitate this is the production of a life story (Lewis. 1989). Narrative is a natural instrument which facilitates expression of personal meaning. Engaging in storying life clarifies meaning of experience by affording closure (Lashley, 1993). The present study employed narrative inquiry, a subset of qualitative research designs, to examine hospice patient biographies (N=7) to determine how the process of constructing a biographical account facing death contributes to meaning formation. It has been argued that approaching death disrupts one's personal narrative resulting in loss of meaning. This activity is said to compel reconstruction of one's story in order to restore meaning in life. Lichter. Mooney and Boyd (1993) argued that recounting experiences enables individuals to resolve unfinished business, an important element for promoting closure, which engenders meaning. Two methods of analysis were adopted: analysis of narrative and storying meaning. Analysis of narrative was based on Polkinghorne's (1995) methods of narrative configuration. Storying meaning was carried out as a means of making sense and showing the significance of thoughts and actions in the context of an unfolding plot. With analysis of narrative a variety of inquiries were undertaken. This included examining the biographies for narrative typologies. Given the importance of goals in meaning formation, we focused on the plot structure before and after illness to establish the influence this experience had upon goal direction. Narrative devices which contribute to meaning formation were also explored. This included: roles, epiphany, closure, and metaphor. These features were examined for patterns, themes, and regularities across biographies. Considering the detrimental impact death anxiety has upon meaning construction, inquiry also focuscd on this concept and its association with selected narrative devices. With storying meaning, knowledge about a particular situation is produced. In this study we concentrated on how meaning is constructed through storying a life facing death. This encompassed searching for processes of meaning-making within the biographies. Analysis of narrative revealed goal-focused progressive narratives. Storying lives in this coherent fashion enabled meaning to be constructed. Narrative devices assisted in production of a coherent stoty which promoted closure to storied life Adoption of these devices also positively reframcd the narrator's viewpoint toward this experience, which enabled individuals to make sense of events and happenings in the story. Surprisingly, death anxiety assumed a peripheral concern; it did not feature as a critical issue in meaning construction within these accounts. Storying meaning revealed processes of meaning-making in these stoned accounts. Unfolding of these stories revealed meaningful lives interrupted by adversity, which were then overcome. Prior to the disruption these accounts were replete with sources of personal meaning. Disruption ensued with evidence of loss of meaning. Restoring meaning involved reconstructing one's personal narrative. Analysis revealed evidence of processes of meaning- making within these stories. Methods of meaning formation included: making sense of illness, changing the life scheme, changing one's perception of the event, and methods of self- transcendence. Similar processes have been established in other studies examining meaning construction. These processes were found to promote closure in storied accounts, an important element which facilitates meaning. This finding supports Lichter and associates' (1993) argument regarding the value of narrative, particularly for those facing death where meaning in life has been lost. Results indicated individuals construct meaning by reconstructing personal narratives in order to make sense of these experiences and integrate these into their storied lives. As Williams (1984) argued it is in this activity of reconstructing one's personal life narrative that illness and its consequences arc ascribcd meaning in the context of one's life. The value of narrative for those approaching death and those experiencing serious loss is emphasised.
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    An evaluation of Qol-Steps : idiographic assessment of quality of life for patients in palliative care : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University
    (Massey University, 1999) Jardine, Andrew
    The primary objective of this study was to evaluate an assessment tool that would enable patients in palliative care to communicate their individual quality of life(QoL) concerns. An examination of existing QoL assessment instruments suggested that most were based upon assumptions more appropriate for research on groups of patients. Such assessment can be classified as standard needs measures. While useful for comparing patients at the aggregate level, standard needs approaches to assessing QoL may not be useful in clinical situations. Instead, an idiographic approach to the assessment of QoL was adopted and it is the development of a particular instrument, called QoL-Steps, which forms the basis for this study. QoL-Steps used a graphical procedure that enabled patients to nominate their important personal aspects of quality of life, rank these aspects in order of importance, and rate the current and ideal levels of each aspect in two different time periods. The data from a sample of 42 out-patients of a hospice programme, highlighted the variability that would be expected from an idiographic approach to the assessment of individual patients. Results from Qol-Steps suggest that the instrument is a viable tool. QoL-Steps provided a wide range of variability for patients, in terms of content, difference scores, rankings and patterns of change. Importantly, many patients saw QoL-Steps as a means of communicating their unique needs within an individual context.
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    Living toward death : the enduring work of terminally ill people : a thesis presented in fulfilment of the requirements for the degree of Doctor of Philosophy at Massey University, Albany, New Zealand
    (Massey University, 2001) Niven, Elizabeth
    This study explores the lived experience of terminally ill people using the personal narratives of patient, kin and nurse. Six sets of patient-kin-nurse form the sample, with data gained via individual interviews. The study is guided by the values of phenomenological philosophy while narrative theory assists data analysis. Interpretation of the data is informed by Anthony Giddens' social constructs relating to modernity and self-identity. The diagnosis of a terminal illness usually forces major changes in the lives of patients, and often provides time for reflection. Although the experience must be individual it is also part of a common human experience that may be enriched by the knowledge of others who have lived through similar ordeals. Yet the constantly evolving nature of the social and health context suggests that the experience of terminal illness is never static and that fresh understandings of living with a life-threatening illness are always necessary. The thesis is that living toward death can be seen as the enduring work of the patient. The patient, in response to experience and events of illness, develops a readiness for change via a process of constantly reconstructing his selfhood. Readiness for change allows him to maintain hope during uncertainty, knowing that change is certain and that he has overcome previous challenges. In this way a sense of enduring self is created that is functional for him and his kin as death comes closer. The interrelational nature of living toward death is presented in the notions of negotiating support and handing over, and these aspects also contribute to the patient's evolving selfhood. The sense of enduring self developed by the patient may contrast with the kin and nurse expectations when they are working towards closure, challenging practitioners to renew their focus on the patient's position and putting aside already acquired assumptions of dying experiences. Similarly the patient's need to negotiate for support and care appears to question the caring actions of kin and nurse, and demands that existing understandings of caring relationships are re-examined. The study shows that the patient's sense of enduring self that develops during his terminal illness has the potential to transcend his death, and that where this happens, both patient and kin approach his death with readiness.
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    A death of one's own : understanding dying well for patients receiving palliative care : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy in Psychology at Massey University, Palmerston North
    (Massey University, 2002) McNaught, Angela Jane
    This thesis investigates individual differences in understandings of dying well from the perspective of patients receiving palliative care. Dying well has traditionally been researched from the health professional's perspective, and this has produced a relatively uniform understanding. The present research addresses gaps in the literature specifically with respect to addressing the palliative care patients' perspective, and the investigation of individual differences in understandings of dying well. Q-methodology was used in the present research to develop accounts of dying well. In this approach a number of statements about a construct are sorted onto a response hierarchy, with the resulting data subjected to a weighted average procedure and factor analysed in a by-participant factor analysis. In the present research, interviews were conducted with patients and hospice nurses to develop a series of themes, or statements, about the notion of dying well. Following a number of guidelines, these themes were then reduced to a manageable set of statements for pilot testing on further patients and health professionals. The final set of 40 statements (Q-set) was established for the task of Q-sorting. Forty patients were recruited from Arohanui Hospice, Palmerston North, to carry out the Q-sort. This task involved placing the statements on a quasi-normally distributed response hierarchy from most important to least important. The resulting Q-sorts were then factor analysed in a by-participant factor analysis, which grouped participants, rather than statements, together on the basis of their correlations. A weighted average procedure was undertaken to produce exemplar Q-sorts for each factor, and these exemplars represent an amalgamation of the similarities between participants. The exemplars were then interpreted in combination with interviews carried out during the Q-sort process. Four factors, or accounts, of dying well for patients receiving palliative care resulted from this analysis. These were labelled as: religious-oriented, independent-oriented, idealised, and family-oriented accounts. The placement of the statements in the religious account reflected the relative importance placed upon God and religious faith. In addition, statements reflecting personal control were rated least important. This was in contrast to the next account, independent-oriented, where statements reflecting control and independence were rated as most important. The third account, idealised, indicated a death denying position, and an idealised notion of the dying experience. Family-oriented, the final account, emphasised the importance of family above all else, including superseding the needs of the individual. Focussing specifically on patients' perspectives has addressed an apparent gap in the literature, and identified an alternative perspective on the notion of dying well. Uncovering four different accounts suggests that there are individual differences in understandings of dying well for patients receiving palliative care. The nature of these differences implies that there is neither total idiosyncrasy nor total uniformity in patients' understandings. This thesis concludes with a discussion of limitations of the present research, possible future directions for research, and a discussion of the potential clinical implications of the findings.