TITLE: Palliative Care: Viewpoints from Nurses Palliative Care has been described as care that includes the physical, intellectual, emotional, social, and spiritual needs of an individual when they are diagnosed with a serious or life-limiting illness. The ultimate goal of palliative care is to promote the best quality of life possible. Palliative care should be implemented across the lifespan and across different health care settings. The purpose of this study was to describe the perceptions, impact, and meaning of palliative care from the viewpoint of nurses who provide basic palliative care to patients and their families. This study used a qualitative design to investigate the meaning, experiences, and feelings of nurses who provide palliative care in small or critical access hospitals and other agencies in this rural area. Three focus groups and eleven interviews were conducted with nurses working in a variety of agencies from October 2015 to February 2016. The four themes that emerged from the data included inconsistencies, knowledge deficits, communication issues, and emotional responses and rewards to providing palliative care. The themes focused on the need for clarification of the meaning of palliative care, more education on the topic and better communication. The nurses shared that it was rewarding to provide palliative care but identified barriers that they felt should be addressed. Nurses participating in the study did not perceive that they had palliative care at their agencies. Recommendations included that more health education about palliative care be provided to healthcare professionals, the community, and individuals with life-limiting illnesses and their families. Key words: palliative care, quality of life, life-limiting illness, nursing

The purpose of this study was to increase awareness and understanding of parental caregivers’ current support needs in order to provide direction in the development of a theory-based hope intervention. The intervention is intended to improve psychosocial and bereavement support for parental caregivers of children with life limiting (LLI) or life threatening illnesses (LTI). The number of parents who have children living with a LLI/LTI is increasing. The impact of these illnesses on parents is significant as they travel alongside their child and experience emotional, physical, and spiritual upheaval. Current empirical research reveals that this journey challenges parents’ understanding of life, faith, and certainty in the future. Many studies demonstrated that parents’ needs are not consistently met and parents often reported the need for psychosocial support. Hope has been found to be an important psychosocial concept for parents and has been shown to provide support when facing difficult circumstances. For this reason, the concept of hope provided the conceptual framework for this research. In order to develop a theory-based psychosocial hope intervention for parental caregivers, a large scale privately funded project that included a metasynthesis of current research, a Delphi survey, and focus groups was conducted. All three components of this project were developed by a research team of two doctorate nurse researchers, one pediatric palliative care specialist, one pediatric oncologist, one community member, and a graduate student. The study presented here is based on the Delphi survey only and serves as the graduate student’s master of nursing thesis. A Delphi survey consisting of three rounds of questions and controlled feedback to experts was employed. Sixty-eight experts were recruited including parental caregivers who have children diagnosed with LLIs or LTIs and those who care for them such as community members, nurses, social workers, and physicians. Based on Bally et al.’s (2013) grounded theory of Keeping Hope Possible, the survey focused on four subprocesses that were identified as essential for parental hope. Experts suggested strategies or activities for each subprocess. Answers were summarized and ranked in order of highest to lowest according to feasibility and effectiveness. The final round revealed a consensus and eight major themes emerged: organize basic needs; connect with others; prioritize self-care; obtain meaningful information; take things day by day; advocate for parental participation; manifest positivity; and celebrate milestones. The survey took place via email to allow easy access to experts and parents globally. This study identified needs of parents of children with LLIs or LTIs in order to develop a theory-based psychosocial hope intervention. Results have the potential to provide direction for a newly developing pediatric palliative care program in Western Canada.

No / Context. The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. Objectives. To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. Methods. A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. Results. Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. Conclusion. Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.

As a life-limiting illness mediated by rapid advancements in biomedical technologies, metastatic breast cancer (MBC) now presents in increasingly unexpected ways where women are living longer. These women’s lives may not fit well with established healthcare and societal understandings of an advanced breast cancer, including disease progression and prognosis. This qualitative inquiry aims to think differently about women’s daily lives with an ongoing MBC. While also considering the underexplored context of these women living in smaller communities. I explored communities on Central Vancouver Island, which is on the west coast of British Columbia, Canada. The research question directing my inquiry was: how are women, who are living with MBC as a life-limiting illness over an extended period, produced as both living and dying subjects? Informing this research was a feminist relational materialist approach with a healthcare practitioner orientation, primarily informed by Braidotti. I used multiple data collection methods centred around sequential interviews with 14 women who had been living relatively well with MBC for at least two years. Working with relational materialist and post qualitative principles, analysis disclosed the importance of temporal pulses and bodily transpositions in women’s lives. Temporal pulses speak to how time was laden with tensions such that a distinctive part of living with ongoing MBC was an embodied sense of fluctuating time. There was also the idea as to how, at any given moment, women could bodily know their illness and mortality through varying frequencies of the presence and/or absence of markers of living and dying, often at the same time. Bodily transpositions speak to how life-limiting illness was not so much about women moving from one set of circumstances to another as part of a clean-edged transition. Rather, the women navigated daily life with few set waymarkers. Within this context, ‘hope’ took on new forms and living with their advanced breast cancer became a kind of endurance demarcated by what I refer to as generative living. These findings call into question the ways in which MBC gets talked about in categorical terms as palliative or end of life, and/or as chronic. Findings are an opportunity for healthcare practitioners, policymakers, and interdisciplinary leaders to further understand MBC specific to our contemporary context. Project findings renew discussions of how best to support women’s needs, including the ways MBC is talked about. There is also the opportunity to direct further research into MBC as an example of today’s shifting boundaries of living and dying (which I am framing as living<=>dying). / Graduate