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Sheward, K. A. (2005). Exploring the juxtaposition of end of life care in the acute setting and the integrated care pathway for the care of the dying.
Abstract: The primary aim of this research paper is to draw on the literature to offer some insight into end of life care in the acute hospital setting. The secondary purpose is to provide an understanding of the integrated clinical pathway (ICP) for the care of the dying, consider its influence related to some of the challenges shaping end of life care and the positive effect it can generate on the quality of care experienced. There are significant challenges that impact on both the delivery and receipt of care for dying patients and their families. Six key influential barriers are considered within the context of the acute setting. Communication and the acute environment are two areas that significantly impact on the quality of care delivered, and are explored in more depth. Narratives from nursing and medical staff convey the realities encountered and difficulties experienced when they are unable to provide the care to which they aspire. Stories are shared by patients and families, which reflect on their experience of end of life care in the acute setting, and offer heath professionals some insight into the lives of the people nurses care for. The literature in relation to the development and implementation of the Liverpool Care of the Dying Pathway, and an overview of the Pathway document is presented. The strengths and limitations of its use are considered, alongside its influence beyond the documentation of clinical care. It is not possible to transfer the hospice service into the hospital setting, however the author suggests that through the implementation of the clinical pathway there is an opportunity to transfer best practice guidelines and positively influence the palliative culture in the acute setting.
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Lewis, T. (2005). Euthanasia: A Foucauldian analysis. Ph.D. thesis, , .
Abstract: This study drew upon the theoretical insights of Michel Foucault to provide a discursive analysis of the term euthanasia, and the issues surrounding the “right-to-die”. It involved an analysis of primary texts from; nursing, general, and legal literature as well as the media between the years 2002-2004. Drawing upon data researched, the study analyses the main discourses regarding the practice of euthanasia for terminally ill individuals. The two competing discourses that emerged were what the author termed the sanctity-of life-discourse and the right-to-die discourse. The aim of the study was to uncover the discourses understanding of “truth” regarding the right-to-die. The analysis revealed that a small percentage of cancer sufferers (5%) die with their pain insufficiently treated and the right-to-die discourse claims that no individual should have to suffer needlessly, asserting the individuals right to autonomy. Directly opposing this is the sanctity-of life-discourse which states all life is sacred and nothing can justify euthanasia as an acceptable practice in society. These findings indicate the need for effective palliative care and pain management when caring for the terminally ill individual. The legal, ethical and moral implications of euthanasia are many and this study discusses the effects these may have on health professionals involved with the care of terminally ill patients. The study revealed an increasing deployment of the right-to-die discourse in the media and revealed concerns regarding the nursing profession's lack of preparation to deal with euthanasia if it becomes a legal option in end of life care.
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Voice, D. M. (2006). Everyday district nurses' experiences revealed through distillation: Palliative care in the community. Ph.D. thesis, , .
Abstract: This modified action research inquiry focused on the everyday, palliative care practice experiences of a group of district nurses. The intent was to develop an understanding of common issues of concern for this group of district nurses when providing palliative home care in a specific community context and to implement practical, achievable strategies in response to these local issues. Five district nurses identified four broad areas for action through four praxis group meetings and comprising one full cycle. These four areas have been named as methods of enhancing support for people and families, possibilities for creatively managing workloads, mechanisms to enrich working partnership with other palliative care providers and possible vehicles for supporting nurses' self care. Implementation of action from this action research project focused on enhancing care and outcomes for people and family served by this group of district nurses in their local community. This study illuminates everyday essences of the district nurse role and the elements articulated by this group in supporting their practice in one New Zealand community. This study also reveals some of the tensions and messiness when employing an action research methodology with nurses in the workplace. The author notes that this research focused on a little known area (palliative care delivered by district nurses in New Zealand) in a local community (a culturally vibrant and ethnically diverse yet with poor health and socioeconomic statistics). She goes on to say that it has resonance with other nurses, particularly those working in community settings who may experience similar issues and concerns. This research also offers important insights for nurses working in any practice setting.
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Meldrum, L. B. B. (2006). Navigating the final journey: Dying in residential aged care in Aotearoa New Zealand.
Abstract: New Zealand statistics project that the aging population of people aged 65 years and over will more than double in the next decade. This has implications for palliative care providers including hospices and hospitals because long-term inpatient care is not generally provided by hospitals and hospices. When dying patients need long-term care, residential settings become an option. The level of palliative care in these facilities is dependent on staff training and numbers. In general, staff are not trained in palliative care, neither do they provide the multidisciplinary facets that define palliative care as undertaken by hospices. This paper describes a practice development initiative using storytelling as the vehicle for introducing the concept of the Liverpool Care Pathway (LCP) for the dying patient into residential aged care settings. With the emergence of a reflective paradigm in nursing the concept of storytelling as a teaching/learning tool has grown. Many staff in residential care settings come from diverse ethnic backgrounds where for some, English is their second language. Storytelling therefore can be a useful approach for learning because it can increase their communication skills. The author suggests that the Liverpool Care Pathway for the dying patient is a model that can be translated across care settings, hospice, hospital, and community. It can demonstrate a framework that facilitates multiprofessional communication and documentation and embraces local needs, culture and language to empower health care workers to deliver high quality care to dying patients and their family/whanau and carers. This paper also explores the role of a facilitator as an agent of change and discusses how the interplay of evidence, context and facilitation can result in the successful implementation of the LCP into residential aged care settings.
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Latta, L. (2007). Exploring the impact of palliative care education for care assistants employed in residential aged care facilities in Otago, New Zealand. Ph.D. thesis, , .
Abstract: Palliative care is a growing specialty in New Zealand with many well-established hospices and palliative care services around the country. However palliative care is not confined to specialist units and is in fact an element of all health services. The aged care sector is one of those services where patients with palliative care needs are prevalent and this is now beginning to be recognised. In these settings care assistants, most of whom have no training, make up a large component of the workforce providing care for residents with increasingly complex needs. In 2005, Hospice New Zealand responded to the recommendations made by the New Zealand Palliative Care Strategy (Ministry of Health, 2001) by developing an eight-hour palliative care course for care assistants employed in residential aged care facilities. The main objective of the course was to increase care assistants' ability to deliver a high standard of palliative care to their residents within their scope of practice.This qualitative study uses descriptive, semi-structured interviews to explore the impact that attending the course had on care assistants and their practice by inviting them to share stories of their experiences caring for dying residents. Factors influencing the implementation of learning in the workplace were identified. The results showed that while attending the course had a positive impact on participants, they were restricted in the extent to which they were able to apply new learning in the workplace, which was largely due to factors that were out of their control. As a result, recommendations are made to enhance workforce development in the aged care sector and to minimise the barriers to the implementation of learning.
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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.
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McLoughlin, N. (2007). Dying to know: Advancing palliative care nursing competence with education in elderly health settings. Ph.D. thesis, , .
Abstract: This paper explores the benefits of using education as one means to advance palliative care competence for nurses. A literature search was conducted revealing numerous educational initiatives and approaches have been developed to improve palliative care. Benefits include improved nursing knowledge, confidence and competence which directly correlate with improved patient outcomes. Accompanying the shift of palliative care from hospices to varied health care providers globally, are disparities in care provision. The literature suggests that reasons for such disparities include insufficient specialised palliative care knowledge and skills of nurses to effectively deliver this care within generalist health settings and lack of information for caregivers. In response, approaches aimed at improving palliative care include reviewing, redefining and implementing nursing roles, education courses, and theoretical frameworks to inform practice and improve outcomes. This paper focuses on the benefits of offering tailored palliative care education in work settings to improve patient care. One entrepreneurial education initiative aimed at advancing palliative nursing and which is currently being implemented in aged care contexts is shared. Careful strategic planning and working more collaboratively between all stakeholders, is strongly recommended in order to manage current and future challenges. Advancing palliative nursing care using appropriate education is achievable and beneficial but is fraught with complexities.
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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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McClunie-Trust, P. (2010). Negotiating Boundaries: The Nurse Family Member Caring for Her Own Relative in Palliative Care. Ph.D. thesis, , .
Abstract: This research illuminates the challenges of living well within one's own family as a nurse caring for her own relative who is dying of a cancer-related illness. Developing a deeper awareness of the consequences of this caring work has been the central focus for inquiry in this research. Nursing requires epistemologies that encompass new ways of understanding how we live within our own families and communities and practice as nurses. The theoretical framework that guides this research interprets the French Philosopher Michel Foucault's (1926-1984) critical history of thought as an ethical project for nursing. It uses conceptual tools developed in his later writing and interviews to draw attention to how discursive knowledge and practices constitute subjectivity in relations of truth, power and the self's relation to the self. The first aspect of the analysis, landscapes of care examines the techniques of discourse as relations of power and knowledge that constitute nurse family members as subjects who have relationships with their own families and other health professionals. The second aspect analyses care of the self and others as self work undertaken to form the self as a particular kind of subject and achieve mastery over one's thoughts and actions.As an exploration of the complex and contradictory subjectivities of the nurse family member, this research illuminates the forms and limits of nursing practice knowledge. It shows how nursing is practised, and the identity of the nurse is created, through intellectual, political and relational work, undertaken on the self in relation to others, as modes of ethical engagement.
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Norton, V. (2014). Don't wait until we are struggling: what patients and family caregivers tell us about using a syringe driver. Kai Tiaki Nursing Research, 5(1), 12–16.
Abstract: Undertakes a study to ascertain the experiences, perceptions and assumptions of patients and their family caregiver(s) about the use of a syringe driver in palliative care. Enrols hospice cancer patients who use syringe drivers to provide continuous delivery of drugs. Conducts interviews with 27 individuals: 12 patient/family caregiver pairs, and 3 caregivers. Uses thematic analysis to apply codes to data to reveal shared versus unique experiences.
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Smit, C. (2017). Making self-care a priority. Whitireia Nursing and Health Journal, (24), 29–35.
Abstract: Highlights the importance of prioritising self-care for palliative care nurses whose prolonged exposure to work-related stress may result in burn-out. Recommends a self-care plan that addresses individual strengths and challenges, including physical, emotional, cognitive, relational and spiritual. Suggests the use of self-care strategies, such as the identification of professional and personal strengths, and the application of mindfulness and stress-reduction techniques to improve self-awareness.
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Rodgers, V., Marshall, B., Hey, F., Blackwell, A., & Lewer, P. (2017). Readiness for providing primary palliative care. Nursing Praxis in New Zealand, 33(3). Retrieved July 1, 2024, from www.nursingpraxis.org
Abstract: Undertakes a pilot study by specialist Supportive Education and Quality (SEQUAL) palliative care team in 5 aged residential care (ARC) facilities in regional NZ. Conducts a clinical staff survey and facility desktop document review to determine readiness, need for and level of support required, to enhance primary palliative care for residents. Identifies lack of experience and palliative care education among clinical staff.
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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. Retrieved July 1, 2024, from http://hdl.handle.net/10092/16143
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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McDonald, C. (2018). Working collaboratively in hospice and palliative care: Sharing time; a grounded theory. Doctoral thesis, Auckland University of Technology, Auckland. Retrieved July 1, 2024, from http://researcharchive.wintec.ac.nz/6223/
Abstract: Addresses the concerns of health professionals working collaboratively in palliative care. Conducts 25 interviews wit 23 participants to arrive at a theory of sharing time to explain the social process of collaboration while individually managing and maintaining their own areas of concern. Explains the concept of health professionals making time in their work days for and with each other to find common ground.
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McCormick, G., & Thompson, S. R. (2019). Provision of palliative and end-of-life care by paramedics in New Zealand communities: a review of international practice and the New Zealand context. Whitireia Journal of Nursing, Health and Social Services, (26), 51–57.
Abstract: Reviews the international literature on paramedic preparedness to provide palliative and EOL care in in the community, and applies it to the NZ context. Finds that paramedics would like improved education and better integration with traditional care providers, encompassing patients, family, whanau and carers. and that they stress the psychological, spiritual and cultural needs of their patients.
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