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Archer, L. K. (2001). We talk what we do: An exploration of the value, role and function of storytelling in nursing from one nurse's practice perspective.
Abstract: The role of storytelling in any society fulfils multiple functions such as maintaining culture, holding history, teaching genealogical lessons, imparting wisdom, entertaining, passing on knowledge. The author suggests that nursing, historically described as a craft with an oral tradition, could be seen to be quietly moving away from the practice of storytelling. Or has it? She asked this question and began to realise that her practice and relationships with colleagues had always been based on stories and storying. To explore this phenomenon, she began to describe her day to day practice in story form, and began to position stories she had previously written. In her work of oncology palliative care nursing within a community setting in New Zealand, the stories proved crucial to her role as an educator, and companion of patients and their families. In this paper she examines how she uses story for her benefit, the patients' benefit, but mainly for the benefit of nursing. She examines from her own perspective, some underlying themes that reinforce the need to continue this ancient tradition and explore the role, value and function of storytelling within nursing.
Keywords: Nursing; Palliative care; Professional development
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Bray, Y. M. (2004). A migrant family's experience of palliative nursing care. Ph.D. thesis, , .
Abstract: The focus of this research was to explore the migrant family's experience in palliative care. In writing this thesis, the author notes that it became evident that cultural safety was a connection that warranted further study in relation to end-of-life nursing care as was illustrated by the intergenerational case study of this migrant family in New Zealand. The use of the case study method of qualitative research enabled the voice of the migrant to be heard and the story of the migrant family's experience to be showcased. The uniqueness of this family's palliative care experience was around the religious and cultural needs and migration as a process of transition from a previous society to a new one. Palliative care was defined by the family approach with strong community support and empowered by culturally safe and appropriate nursing practice. End-of-life illness is a time when cultural perspectives are challenged for patients and their families and religious and cultural practices take on a new priority, regardless of how they have lived life previously. As a migrant nurse living and working in the New Zealand context, the author identifies as an important factor, the nurse-patient interaction as an encounter between two cultural perspectives, the patient's and the nurse as bearer of her own culture. Acknowledging this factor is an important step in developing a culturally safe approach to practice, an approach that proved to be a major ingredient in planning and caring for this patient and his family in end-of-life illness. This study and thesis explores the underpinnings of culturally safe palliative nursing care and identified 'reflexive bracketing' as a useful practice in the process.
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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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Campbell, K. (2008). Experiences of rural women who have cared for their terminally ill partners. In Jean Ross (Ed.), Rural nursing: Aspects of practice (pp. 166-178). [Dunedin]: Rural Health Opportunities.
Abstract: This chapter firstly offers background information in relation to palliative care and the role of women as providers of care in the home setting. Secondly, it discusses a study that evolved from a trend the author observed as a district nurse providing community palliative care in rural New Zealand and from New Zealand literature; that the majority of carers of the terminally ill in home-settings are women. The aim of this research study was to offer insights into the requirements of caring for a dying person at home and provide information to assist nurses working in the community and other women who take on the caregiver's role.
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Carter, H., McKinlay, E. M., Scott, I., Wise, D., & MacLeod, R. (2002). Impact of a hospital palliative care service: Perspective of the hospital staff. JBI Reports, 18(3), 160–167.
Abstract: The first New Zealand hospital palliative care support service was established in 1985. Different service models have now been adopted by various major hospitals. In 1998, a palliative care service, funded by Mary Potter Hospice, was piloted at Wellington Public Hospital. Twelve months post-implementation, the hospital staff's views of the service were evaluated. It was found that referrals to palliative care from hospital specialities outside the Cancer Centre increased. While most doctors, nurses and social workers strongly agreed or agreed that the service positively influenced patients' care and effectively addressed their symptom management needs, spiritual needs were less often met. Over 90 percent of each discipline strongly agreed or agreed that the service had assisted them in caring for patients, but, only about a half agreed that useful discharge planning advice and staff support was provided. Significant differences in responses were found between different disciplines and specialities. One fifth of the staff identified palliative care education needs. Recommendations are made concerning the development of a future hospital palliative care service.
Keywords: Palliative care; Hospitals; Attitude of health personnel; Cancer
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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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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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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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English, W. (2018). The moments we meet : lived experiences of rapport for nurses, patients and families in palliative care. Master's thesis, University of Canterbury, Christchurch.
Abstract: Undertakes 12 in-depth interviews with nurses, patients and families about their experiences of rapport and inter-connectedness in the context of palliative care. By means of thematic analysis identifies major themes and associated emotions deriving from connectedness or disconnectedness. Links rapport and connection to holistic care.
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Falleni, P. M. (2004). Whakaata ikei runga manaaki: Reflection on caring. International Journal of Palliative Nursing, 10(8), 390–392.
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Hall, K. A. (2003). Soothing sounds: An investigation into the value of music in palliative care. Ph.D. thesis, , .
Abstract: This qualitative study focuses on van Manen's theory of the 'lived experience' in relation to two families and asks the first thesis question. What is the value of music in the care of someone who is dying? Over the course of their loved one's illness these families provided music in the patients home as part of their care. The study also captures the experiences of two nurses who work in the palliative setting, and their use of music in providing holistic care to their patients. Their experiences relate to the second question. How can nurses be assisted in introducing music into their planned care of patients? The results demonstrate the effectiveness of using taped music for someone who is dying, and the reduction in symptoms, such as anxiety, and pain. It also highlights the importance of the individual's choice, and the special moments that can be achieved for both patient and families when music is used in a caring, supportive environment. This encourages communication, especially in the sharing of emotions. This study may be the first qualitative study in New Zealand, that addresses the value of music in palliative care, therefore there is a need for continued research into this therapy as a treatment modality as part of planned care in palliative nursing.
Keywords: Palliative care; Nursing; Qualiltative research; Alternative therapies
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Hammond, S. (2001). Parallel journeys: Perceptions of palliative care. Ph.D. thesis, , .
Abstract: The delivery of palliative care within contemporary New Zealand society is discussed, in the light of the recent publication of The New Zealand Palliative Care Strategy (2001). The viewpoint taken is largely descriptive rather than prescriptive, being based on a literature survey of international research and academic theory, which is also informed by the author's professionally gained knowledge. Four different perspectives, comprising a mix of providers and recipients of care are investigated: those of central government planning; specialist palliative care units; aged-care complexes; and patients, family and whanau. As an area of healthcare which current demographic projections indicate will become increasingly significant, the provision of palliative care to residents of and patients within aged-care complexes receives special attention. A metaphor of “parallel travellers” on “parallel journeys” is used to provide a thematic basis to the paper. The lived experiences and perceptions of each group of “parallel travellers” are explored. Difficulties in defining and evaluating palliative care, the implications of main-streaming, the scope of palliative care provision, the educative role of specialist palliative care providers and the current focus on mechanistic outcome measures are discussed. It is contended that the values and goals, both explicit and implicit, of the four specified groups may not at present be sufficiently congruent to optimise the effective provision of palliative care from the point of view of all concerned. While adequate resourcing and a genuinely collaborative approach among healthcare providers are both acknowledged to be critical, the potential for palliative care nurse practitioners to be appointed to the role of “care co-ordinator” alluded to within The New Zealand Palliative Care Strategy (2001), is also seen as pivotal. Insights from a postmodern perspective are offered as one possible way of achieving greater congruence.
Keywords: Palliative care; Policy; Geriatric nursing
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Henry, A. (2020). Staying at home: A qualitative descriptive study on Pacific palliative health. Master's thesis, University of Otago, Christchurch.
Abstract: Develops an understanding of the experiences of, and barriers for Pacific peoples in Canterbury utilising palliative care services. Considers the strengths and enablers for Pacific peoples accessing palliative care services and how such services, including home based palliative care, could better serve this community. Undertakes interviews using a semi-structured question guide, with nine family members who had provided palliative care within the last three years.
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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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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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