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    Using a patient held record for home based palliative care patients : a case study research project : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosophy in Nursing at Massey University, Manawatu, New Zealand
    (Massey University, 2012) White, Denise
    A paper based patient[-]held record (PHR) was introduced by the study region’s district nursing service and hospice palliative care co-ordinators to promote continuity of care for home[-]based palliative patients. The inquiry has employed a case study research approach to gain greater understanding of the use, challenges and impact of this initiative from those who had or used the PHR. Through the use of semi-structured interviews and focus groups, patients, lay carers, and clinicians from the main groups providing community palliative services were asked about their views and experiences in relation to use of the PHR. The research suggests a PHR can bring a positive impact for palliative patients and their lay carers, particularly where used for sharing information with the patient and family, and between clinicians and services. When used for this purpose the PHR can assist clinicians to collaborate and co-ordinate care and to promote patient centred and empowering care. However, the findings also reveal that lack of engagement by clinicians with the PHR can lead to frustration and disappointment, particularly for those most connected to and invested in its use, carrying the potential to disrupt both therapeutic and professional relationships. The study revealed conflicting goals regarding the purpose of the PHR. Most clinician’s [sic] appeared to focus their use of it on promoting efficiency, primarily in the direction of value for the clinician and service. In contrast, most lay participants viewed their PHR as a tool to assist self-care and improve their chances to experience continuity. The results reveal that some well embedded ideologies, routines and rituals currently operating within the health sector have the power to constrain or restrain partnership and innovation. However, the position of the patient and family in their home appears to offer a degree of counteraction of power and agency which some patients and family had employed to influence and co-construct the use and function of their PHR with their home visiting clinicians.
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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.
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    From caregiving to bereavement : weaving the strands of identity : a thesis presented in partial fulfillment of the requirements for the degree of Master of Social Work at Massey University, Palmerston North, New Zealand
    (Massey University, 2009) Lee, Virginia
    “In what ways does the experience of caregiving for a terminally ill family member affect the experience and process of bereavement?” The identity of family caregivers in palliative care has been ambiguous: caregivers are often unaware they fit the description of ‘carer’. Previous research describes two contrasting constructs that shape the identity of the caregiver: burden and privilege. Research, including this study, suggests that the emergence of identity as a carer impacts on the course and experience of bereavement. Two semi – structured interviews were conducted with a small number of caregiving family members: during the caregiving role and in their subsequent bereavement. This exploratory study used phenomenological research to examine the experiences of those caregivers interviewed. The data were examined using the existential themes uncovered in analysis. This paper reports on those themes.
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    Talking about end-of-life care for older people in a rural New Zealand community : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Palmerston North, New Zealand
    (Massey University, 2009) Horrell, Barbara Mary
    Rural experiences are under-represented in the end-of-life care literature. In addition, population projections indicate that the numbers of older rural people are increasing. In an attempt to better understand their needs, this study considers how older people experience end-of-life (EOL) care in a rural New Zealand setting. Having responded to local media and community notices, seven participants, who in the last eighteen months had cared for someone over the age of 65 with a terminal illness, spoke about their experience of rural EOL care. Their stories were then transcribed and analysed, using narrative analysis. Participants spoke about similar issues, but from different, sometimes conflicting, perspectives. Positioning themselves primarily as carers, rather than as rural people, the participants’ stories nevertheless reflected their social location for caring, as they talked about exhaustion and needing 24 hour support; limited access to specialist palliative care services; and the difficulties of caring for people with complex needs. At the same time they spoke of the joys and rewards of caring. The ambivalence and conflict evident in the stories indicates the participants’ location in a particular place and time in the history of dying. Caught between two paradigms of care, these participants vacillate between the desire for the empathic, compassionate care of yesteryear and the best that modern medical technology can offer. Discussing when to continue and when to stop medical intervention produced the most conflicting perspectives. However, all agreed that having time to form therapeutic relationships is a key component of EOL care. Overall, the stories demonstrate that the multiple and complex experiences of older rural people render stereotypical assumptions about rural life and dying at home problematic. However, as this study demonstrates, simply talking with people provides access to and understanding of their lived realities. Incorporating this kind of approach in future rural EOL care planning will move us closer to achieving contemporary goals of positive ageing and dying well.