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Carter, H., MacLeod, R., Brander, P., & McPherson, K. (2004). Living with a terminal illness: Patients' priorities. Journal of Advanced Nursing, 45(6), 611–620.
Abstract: The aim of this paper is to report on an exploratory, qualitative study exploring what people living with terminal illness considered were the areas of priority in their lives. Ten people living with terminal cancer were interviewed. Analysis of the interviews incorporated principles of narrative analysis and grounded theory. Over 30 categories were identified and collated into five inter-related themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge) encompassing the issues of importance to all participants. Each theme focused on 'life and living' in relation to life as it was or would be without illness. Practical issues of daily living and the opportunity to address philosophical issues around the meaning of life emerged as important areas. The central theme, 'taking charge', concerned with people's levels of life engagement, was integrally connected to all other themes. The findings suggest that the way in which health professionals manage patients' involvement in matters such as symptom relief can impact on existential areas of concern. The findings challenge some aspects of traditional 'expert-defined' outcome measures. As this was an exploratory study, further work is needed to test and develop the model presented.
Keywords: Terminal care; Quality of life; Nursing models; Cancer
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Bickley, J. (2002). A study of medical, nursing, and institutional not-for-resuscitation (NFR) discourses. Ph.D. thesis, , .
Abstract: This study investigates the way that medical, nursing and institutional discourses construct knowledge in the specific context of Not-for-resuscitation (NFR)in a New Zealand general hospital where NFR guidelines are available in the wards and from the regional ethics committee. The thesis argues that there are ranges of techniques that staff use to construct NFR knowledge, enacted through various forms of speech and silence, which result in orderly and disorderly experiences for patients nearing death. The study was conducted through a critical analysis of the talk of health professionals and the Chairperson of the Regional Ethics Committee.
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Spackman, N. E. (2008). Nurses' early experiences with patient death. Ph.D. thesis, , .
Abstract: Chronic stress and 'burnout' have been extensively researched in nursing populations, but very little is known about the impact of specific acutely stressful or significant events. A novice nurse's first encounter with patient death may pose considerable cognitive, emotional and clinical challenges. Using a mixed methods design, this study explored the clinical circumstances, impact and challenges and rewards of nurses' early experiences with patient death.
Keywords: New graduate nurses; Terminal care
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Polaschek, N. (2003). Living on dialysis: Concerns of clients in a renal setting. Journal of Advanced Nursing, 41(1), 44–52.
Abstract: This article reports a study that sought to understand the experience of a group of Caucasian men with end stage renal failure managing their own haemodialysis therapy in their homes. The study used a critical interpretive methodology. The renal setting was critically viewed as a specialised health care context constituted by several interrelated discourses. Although established by the dominant professional discourse, it also includes a number of others, in particular an obscure client discourse that is a response to the dominant discourse. Initially, participants' own interpretations of their individual experiences were outlined. These were then collectively reinterpreted by contextualising them in terms of the critical view of the renal setting, in order to discern their own views as renal clients that were obscured by the language and ideas of the dominant discourse with which they had been enculturated. From an analysis of the set of accounts derived from interviews with six participants, four concerns of the renal client discourse were identified. These concerns were: (1) suffering from continuing symptoms of end stage renal failure and dialysis; (2) limitations resulting from negotiating dialysis into their lifestyle; (3) ongoingness and uncertainty of life on dialysis; and (4) altered relationship between autonomy and dependence inherent in living on dialysis. One specific implication of this study is that the distinctive potential of the nursing role in renal settings lies beyond the performance of a range of technical tasks, in addressing the experience of people living on dialysis, described here as the concerns of the renal client discourse.
Keywords: Nurse-patient relations; Psychology; Attitude to health; Terminal care
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Cleaver, H. (2005). Reflections on knowing, not knowing and being in palliative care nursing. Ph.D. thesis, , .
Abstract: The author notes that responses to questions from dying people and their families are as individual as each nurse, patient, family member, or situation. This is well recognised and an unspoken truth in palliative care practice. This paper explores the subjective nature of knowledge in palliative care generated through capturing moments of practice and subsequent reflections. This demonstrates how the author uses her model of care to open a space that enables the person and their family to find meaning from their experience and articulate what they need at the time. The author identifies her interest in the paradoxical reality of knowing and not knowing and describes how that paradox contributes to her role in supporting individuals' needs within their realities.
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Boyd, M. E. (2005). Advancing nursing knowledge: The experience of a nurse working with dying people in a highly remote rural area. Ph.D. thesis, , .
Abstract: By describing and gaining insight into one rural nurse's experience working with dying people in a highly, remote rural area, this project seeks to advance nursing practice. Key findings indicate that, through community partnership and teamwork, nurses can act to assist rural people by: increasing public awareness of health resources; exposing barriers to access; and identifying different health service needs. The author makes a case that some rural nurses may feel insufficiently prepared for rural nursing. To understand death and dying, key ideas from Kuebler-Ross's (1969) framework for dying are examined: denial, fear of dying, spirituality, hope, depression and how to die well. Nurses require a blend of end-of-life and rural nursing postgraduate education and skills, to manage well. Key findings imply that dying people can be helped by: improving function and independence to promote autonomy; encouraging faith, hope, and love within the person's personal concept of spirituality; listening to dying people, to oneself, to one's own reactions, and knowing oneself. Parse's theory (1981) indicates nurses can help rural dying people by the following key factors: encouraging the person to live life to the full while dying; accepting humans cannot be separated from their perspectives, circumstances or environments; focusing on quality of life from the person's perspective: encouraging the person to live life fully while dying; and offering new possibilities. The author goes on to say that Parse's human-universe-health process aids nurses to live their beliefs indicating Parse's theory could guide and advance nursing practice.
Keywords: Terminal care; Rural nursing; Rural health services
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Dulieu, F. (2005). Collaborative practice: A study in bridging the gap to transform the delivery of specialist palliative nursing care in residential aged care facilities.
Abstract: This paper documents a practice development initiative with the aim of formulating a rationale for the professional practice development of a relatively recently conceived nursing initiative; that of a Palliative Care Liaison Nurse (PCLN) role. The project involved conducting an inquiry through a search of the literature with the aim of discovering ways to articulate, then develop, the role to meet the needs of elderly people living in Residential Aged Care Facilities (RACFs), their family and the whanau. The paper initially explores the concept of liaison roles globally, to consider how this role might be located as an interagency position between palliative care and aged care within the context of Aotearoa/New Zealand. The paper then reveals the perceived skills and personal attributes required by a person in the PCLN role that the author, drawing from personal and professional experience of having been appointed to this position, considers are necessary to effectively manage the diverse dimensions of this role. Bridging the gap is a key role discussed which centres on the capacity to organise and present an effective education programme while supporting, encouraging and role modeling for staff providing the day to day nursing care. This role involves practice wisdom and advocating for change and tolerance within everyday practice. An example of this dimension is discussed in depth, because the researcher considers that through staff working together, they can effectively bridge the knowledge-practice gap which exists between specialist palliative and gerontological nursing care.
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Cavanagh, C. (2004). Dignity and palliative care: A search to discover the true meaning of the concept of “dying with dignity”.
Abstract: This paper presents an exploration of a foundational goal of palliative care nursing which is to help patients die with dignity. The paper presents this practice exploration as a journey to gain understanding of the concept of dignity; the author notes that it does not avoid the difficulties encountered in practice situations because dying with dignity is unique and curiously also invisible and different for everyone. Much of human life is conducted through stories and much of nursing involves telling and listening to stories. Many of our social institutions are comprised almost entirely of opportunities for telling and retelling stories. Nurses are constantly listening to patients telling them what is going on in their lives and because of this the stories related here are written bold and raw. The three stories explore and reveal in-depth details of nursing practice that evolved and changed after reflection. The paper also reveals and explores the untold and often painful stories that challenge nurses' capacity to offer dignified care. To deepen the exploration towards discovering ways to articulate the complexity of dignity, the author reflected on the nature of the practice changes documented in the stories and then used a range of diverse literature and her love of the paintings and philosophy of a New Zealander, Ralph Hotere, to support her ideas that dignity is indeed a complex phenomenon.
Keywords: Palliative care; Nursing; Case studies; Nurse-patient relations; Terminal care
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Richardson, C. A. (2005). Ever decreasing circles: Non-curative terminal illness, empowerment and decision making: Lessons for nursing practice. Ph.D. thesis, , .
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Johnstone, S. (2006). Undergraduate nursing and death education. Ph.D. thesis, , .
Abstract: Death education encompasses many complex realities, for both the students and lecturers involved. This quantitative research explored the experiential and didactic preparation of nursing students through a content analysis, of one New Zealand, three year Bachelor of Nursing programme, in relation to death education. The Otago Polytechnic Bachelor of Nursing programme incorporates compulsory and optional courses, with the courses taught as an integrated programme with a progressive, sequential approach. This approach builds on content, deepening understanding from year to year, as well as providing opportunities for experiential learning and broadening of understanding. The literature review discusses three dominant themes of undergraduate death education: education, death, and transition. The data collection tool incorporates eighteen key terms, ten teaching methods and ten assessment methods. The programme and individual course documents, which define course content, teaching and assessment were scanned and analysed. The findings initially showed limited evidence of death education in course documents, however deeper analysis of the documents showed further evidence over the three year programme. The existence of death education is implied rather than overt throughout many course documents, through the use of broad practice statements. Content analysis is one way of shedding light on programme content in relation to death education. Limitations of the content analysis approach mean measuring experiential and didactic learning is not fully achievable from documentation analysis only. Further development of Bachelor of Nursing death education is an ongoing challenge, with current programmes very full and possibly lacking the capacity to increase content. Bachelor of Nursing programmes are discussed, highlighting the need for student focused learning with emphasis on acquiring and processing information, rather than mastery of content.
Keywords: Terminal care; Nursing; Education
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Latta, L. (2005). Reflective storytelling to enhance learning from practice experience. In J. McDrury (Ed.), Nursing matters: A reader for teaching and learning in the clinical setting (pp.67-82).. Dunedin: Otago Polytechnic.
Abstract: The author looks at the value of using reflective storytelling as a teaching/learning tool in the hospice setting and examines constructs that provide a theoretical underpinning. She also outlines processes that support the implementation of storytelling practice and the creation of a safe space for storytelling. At the end of the chapter, discussion questions are provided by Janice McDrury.
Keywords: Terminal care; Palliative care; Teaching methods; Nursing
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Maries, V. J. (2004). Chosen moments: A reflective journey illustrating terminally ill patients choosing the moment to die.
Abstract: In this project the author reveals how she is observing and thinking as she cares for people who are dying. She records her reflections and insights and reveals that there is life right up to the moment of death, having observed terminally ill patients choosing the precise moment to die. She describes her observations of these moments by using poetry and stories, and explores the implications for her practice as a result. The author presents her reflections using an individualistic, reflective and exploratory perspective which is informed by the work of nursing scholars. This paper is framed using the metaphors of a journey and a window to indicate the reflective process that the author used to journal her observations in practice over time.
Keywords: Terminal care; Palliative care; Nurse-patient relations
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Hill, N. (2001). A shared revelation: A comparative, triangulated study on improving quality of life in the terminally ill. Ph.D. thesis, , .
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Campbell, K. (2004). Intertwining the role of partner and caregiver: A phenomenological study of the experiences of four New Zealand rural women who have cared for their terminally ill partners. Ph.D. thesis, , .
Abstract: The stories of the women who live and work in rural settings in New Zealand have begun to reveal unique contributions that they have made to their families and community. This research study evolved from a trend the researcher observed as a district nurse providing community palliative care in rural New Zealand; that the majority of carers of those who are terminally in home-settings are in fact women. This qualitative study aimed to explore through guided conversational interviews the experiences of four women who have cared for their terminally ill partners who have subsequently died. The study investigated if these women's experiences were comparable to that of other women in existing palliative care literature. This research project focused particularly on elucidating the women's experience of intertwining the role of partner and caregiver. Heidegger's hermeneutic philosophy informed the methodology because he focused on what it meant to 'be' rather than 'how we know what we know'. The project focused on the meanings the women made of this dual role in their lives. Women already in the role of partner were now faced with the added responsibility of caregiver to meet the complex needs of their loved one. Usually they had no training to prepare them for this experience. The study reveals ways in which the visiting palliative care nurse becomes very important to them. The women's own voices reveal the high level of respect for their partners and address the harsh realities, revealing poignant and striking concerns in their lives. These stories are shared with the intent of enriching nurses' and other health professionals' understanding of the women's experiences. The author notes that understanding these women's experience is not only a way of honouring these remarkable women but more widely it will inform and possibly transform practice through guideline and policy refinement.
Keywords: Rural nursing; Terminal care; Palliative care; Home care; Nurse-family relations
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Johnson, S. (2007). Hope in terminal illness. Ph.D. thesis, , .
Abstract: Hope is considered an elusive, vague, over-used, and ambiguous concept in nursing practice which lacks clarity, but hope is essential to the quality of life in the terminally ill. Therefore, hope is an important concept to research further. A gap in nursing research has been identified in the area of hope in terminal illness. The aims of this research were to clarify the concept of hope as perceived by patients with a terminal illness; to develop hope as an evidence-based nursing concept; and to contribute new knowledge and insights about hope to the relatively new field of palliative care. Utilising Rodgers' (2000b) evolutionary concept analysis methodology and thematic content analysis, 17 pieces of research-based literature on hope as perceived by adult patients with any terminal illness pathology (from the disciplines of nursing and medicine) have been reviewed and analysed. Hope's attributes, antecedents, consequences, social-cultural variations, temporal variations, surrogate terms, and related concepts have been considered. An exemplary case of the concept in action is presented along with the evolution of the concept hope in terminal illness. Ten essential attributes of the concept were identified in this research: positive expectation, personal qualities, spirituality, goals, comfort, help / caring, interpersonal relationships, control, legacy, and life review. The evolution of hope in terminal illness has evolved from patients hoping for a prosperous healthy future to an enrichment of being is more important than having or doing. Patients' hopes and goals are scaled down and refocused in order to live in the present and enjoy the time they have left with loved ones. Hope in the terminal phase of one's illness is orientated in the past and the present, hope in the here and hope in the now. The author concludes that by completing all the steps to Rodgers' (2000b) evolutionary view of concept analysis, a working definition and clarification of the concept in its current use has been achieved, providing a solid conceptual foundation for further study. Recommendations are made for hope-enhansing strategies, that may help to maximise the quality of life of terminally ill patients in the future.
Keywords: Palliative care; Terminal care; Psychology
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