A qualitative study of Samoan cancer patients' experiences.

METHODS: This qualitative interview study was part of a larger study that interviewed19 participants recruited among patients with cancer registered with Samoa Cancer Society, or patients recently discharged from the main tertiary hospital in Samoa. Interview transcripts were reviewed, and the research team identified the key palliative-care-related themes. RESULTS: Analysis led to the generation of the following key themes: living with pain; resource constraints; support from family and faith; and interactions with healthcare professionals. Most participants were experiencing unresolved pain as a result of poor health knowledge, lack of access to medications and practical issues, such as financial limitations and lack of transport. Participants also reported a lack of resources, including financial constraints, as a significant barrier to effective healthcare. Sources of support for patients with cancer were most commonly strong family relationships and religious faith. Although it was difficult for the participants to access care from healthcare professionals, they found that honest communication about their condition was comforting. However, they were frustrated if they felt communication was unsatisfactory. CONCLUSION: This study provides much needed evidence on the issues that affect the quality of life patients with cancer receiving palliative care and their families in Samoa. It also highlights the intersectionality of these issues and how this compounds the patient experience. Practical recommendations for improving palliative care lie in a few key areas, including a need for improved access to opioids and support for family caregivers. However, from a systemic perspective, the way forward should lie in harnessing the strengths of Samoan culture, including the strong sense of family and the role of religion, to provide support and care for palliative patients.

Care biography: A concept analysis.

In this article, we investigate how the concept of Care Biography and related concepts are understood and operationalised and describe how it can be applied to advancing our understanding and practice of holistic and person-centred care. Walker and Avant's eight-step concept analysis method was conducted involving multiple database searches, with potential or actual applications of Care Biography identified based on multiple discussions among all authors. Our findings demonstrate Care Biography to be a novel overarching concept derived from the conjunction of multiple other concepts and applicable across multiple care settings. Concepts related to Care Biography exist but were more narrowly defined and mainly applied in intensive care, aged care, and palliative care settings. They are associated with the themes of Meaningfulness and Existential Coping, Empathy and Understanding, Promoting Positive Relationships, Social and Cultural Contexts, and Self-Care, which we used to inform and refine our concept analysis of Care Biography. In Conclusion, the concept of Care Biography, can provide a deeper understanding of a person and their care needs, facilitate integrated and personalised care, empower people to be in control of their care throughout their life, and help promote ethical standards of care.

'Physical well-being is our top priority': Healthcare professionals' challenges in supporting psychosocial well-being in stroke services.

BACKGROUND: Following stroke, a sense of well-being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well-being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well-being, and to examine how the practice context influences care practice. METHODS: Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. RESULTS: Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well-being, this could be deprioritised amidst the time-oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. CONCLUSION: Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well-being within their work. This has implications for the well-being of people with stroke, and the well-being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well-being work remains other to the 'core' work of stroke, and what needs to be considered if stroke services are to better support people's well-being. PATIENT OR PUBLIC CONTRIBUTIONS: People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research.

"Beyond Feasibility": A Qualitative Study of Patients, Their Whanau (Family) and Staff Perspectives and Experiences of a Non- Pharmacological Delirium-Prevention Intervention in Two Aotearoa/New Zealand Hospices.

CONTEXT: Delirium is prevalent in the hospice population. Despite causing significant distress to patients and families, delirium is under-recognised. There is a need to better understand delirium prevention and outcomes in this population including people's experiences of delirium-prevention strategies in different cultural contexts. OBJECTIVES: To determine whether the "PRESERVE Aotearoa" delirium prevention intervention was feasible and acceptable for Maori (indigenous peoples of Aotearoa/ New Zealand) and non-Maori patients with advanced cancer, their families (called whanau in this paper), and clinical staff. METHODS: A qualitative semistructured interview substudy of a cohort PRESERVE Aotearoa feasibility study codesigned with a Maori partner to ensure inclusion of Maori-centred values. The study was underpinned conceptually by He Awa Whiria (braided rivers)-combining Western and Maori knowledges. Data were analysed using Hopwood and Srivasta's framework. RESULTS: Twenty-six patients and their whanau, 21 clinical staff and five researchers from two stand-alone hospices in the North Island, Aotearoa/New Zealand. Finding showed that, for the most part, participants considered the study interventions feasible and acceptable. Inductive analysis resulted in four themes highlighting the importance to whanau of their participation in the study: benefits of learning about delirium; the affirmation of the caregiver role and whanau-centred care; valuing fundamentals of care; and research as legacy. CONCLUSION: This qualitative study found that it is feasible and acceptable to study multicomponent nonpharmacological delirium-prevention interventions in Aotearoa/New Zealand hospice inpatient units. The study also highlights the value of Maori-centred approaches and whanau involvement in these settings.

Matters of care and the good death - rhetoric or reality?

PURPOSE OF REVIEW: The notion of a 'good death' is central to hospice and palliative care philosophy. This review interrogates social imaginaries of the 'good death' in the context of current global, health and sociopolitical challenges. RECENT FINDINGS: Research literature and policy documents across fields continue to place emphasis on the 'good death'. As part of the equity turn in palliative care, there is a growing body of work highlighting the diverse perspectives of people whose voices were heretofore not understood. Inequities are evident not only in terms of who has access to a 'good death' but also related to the effects of the dominant 'good death' script itself. SUMMARY: There is increasing evidence that pursuit of the 'good death' narrative may be counter to supporting people as they are living and dying. The authors instead argue for a research, policy and practice shift to 'matters of care'.

Patient-reported outcome measurement in palliative care: A hermeneutic narrative review.

OBJECTIVES: Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures. METHODS: A hermeneutic narrative review underpinned by a view of "knowing" as an ongoing social accomplishment and inspired by complexity theory. RESULTS: This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein. SIGNIFICANCE OF RESULTS: In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

'When a patient chooses to die at home, that's what they want comfort, home': Brilliance in community-based palliative care nursing.

INTRODUCTION: To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted. METHODS: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted. RESULTS: Brilliant community-based palliative care nursing largely involved maintaining normality in patients' and carers' lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative 'normals'. CONCLUSION: Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality. PATIENT OR PUBLIC CONTRIBUTION: Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.

'The palliative care ambulance': A qualitative study of patient and caregiver perspectives of an ambulance service.

BACKGROUND: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. AIM: To explore patient and family caregiver experiences of paramedics' contribution to palliative care at home. DESIGN: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. SETTING/PARTICIPANTS: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. RESULTS: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. CONCLUSION: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

Patient safety for people experiencing advanced dementia in hospital: A video reflexive ethnography.

BACKGROUND: Patient safety for people experiencing dementia in acute hospitals is a global priority. Despite national strategies as well as safety and quality guidelines, how safety practices are enacted within the complexities of everyday work are poorly understood and articulated. METHODS: Using video reflexive ethnography, this 18-month study was conducted within an inpatient geriatric evaluation and management unit for people experiencing dementia and/or delirium in Australia. Patients, family members, and staff members participated by: allowing researchers to document fieldwork notes and video-record their practices and/or accounts thereof; and/or interpreting video-recordings with researchers to co-analyse and make sense of the data. RESULTS: Safe care for people experiencing advanced dementia involved: negotiating risk via leadership, teamwork, and transparency; practice-based learning through situated adaptation; managing personhood versus protocols by doing the 'right' thing; joyful and meaningful work; as well as incorporating patient and family voices to do safety together. CONCLUSION: Patient safety for people experiencing dementia requires continuous responsiveness and prioritising in the context of multiple risks by a staff collective with a shared purpose. Ongoing research to better understand how the nuances of patient safety unfold in everyday complex clinical realities in diverse contexts and with key stakeholders is required.

Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: a qualitative study.

BACKGROUND: Visiting restrictions were enacted in Aotearoa New Zealand to reduce transmission of COVID-19 and protect the healthcare system. This research aimed to investigate the experiences of families and clinicians of hospital visiting for people with palliative and end-of-life care needs during restrictions. METHODS: Semistructured interviews were completed between March and October 2021 with family members and clinicians who had personally experienced enactment of visiting restrictions during pandemic restrictions. A critical realist ontology was used to approach data analysis, sorting and coding to generate themes. RESULTS: Twenty-seven participants were interviewed, 13 being families who had experienced bereavement of a family member during the restrictions: seven nurses or physicians and seven being non-bereaved family members. Four themes were generated: patient safety-(re)defining the 'Visitor'; the primacy of SARS-CoV-2-patient safety and negotiating risk; dying alone: enduring harms; and agency, strategies and workarounds. CONCLUSION: Visitor rights and visitor policy at the end of life require greater protection during a pandemic. Transparent, coherent, publicly available evidence-based guidelines that key stakeholders, including patients, families and ethicists, are included in producing, are urgently required. We want to avert a legacy of disenfranchised grief in future pandemics.

Forensic Mental Health Care Staff Experiences of Providing Palliative Care: A Qualitative Descriptive Case Study Approach.

BACKGROUND: There is a steady increase in the number of people dying within the walls of forensic institutions across the world. This escalation is, to a large extent, because of an aging population. There is a need to explore how palliative care can be delivered in these settings where, historically, security has been the main focus. OBJECTIVE: The aims of this study were to explore staff experiences of providing palliative care in a forensic mental health unit and to establish the subjective significance of those experiences. METHOD: A qualitative, descriptive, case study approach was used. This study examined staff perspectives of provision of palliative care to a long-term service user who had been diagnosed with a life-limiting illness and who subsequently died. Interviews were analyzed using codebook thematic analysis. RESULTS: There were nine in-depth interviews with staff who were involved in the service user's care. Analysis resulted in five main themes: intrinsic dignity, "It was out of our depth," "It's just the way these places are," "Hospital was the practical place," and specialist services. CONCLUSION: If equitable access to palliative care is a human right, then it is essential that individuals in secure care with mental illness are able to access palliative care services that are responsive to their needs. Forensic mental health services need to be proactively prepared for the inevitability that people will die in their care.

Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

BACKGROUND AND OBJECTIVES: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

Unsettling Place(s) at the end of life.

Critical considerations of space and place at the end of life have been limited in the social science literature. To address this gap, we draw on empirical data from two interrelated but separate qualitative Australian data sets to critically examine dying in relation to considerations of space, place and affect. These studies share the primary aim to better understand and articulate end-of-life experiences, with one using video reflexive ethnography and the other semi-structured interviews with patients. Challenging the broader valorisation of particular places of dying and death (e.g. home, hospice, hospital), we critically explore the meanings and affects of space and place and how they are rooted in normative expectations. Drawing on participant accounts we interrogate simplistic concepts of home versus hospice, or hospital versus community, developing a critical social science of the intersections of space and place at the end of life.

Medication use in aged care residents in the last year of life: A scoping review.

BACKGROUND: A substantial number of older adults die in residential aged care facilities, yet little is known about the characteristics of and how best to optimise medication use in the last year of life. AIM: The aim of this review was to map characteristics of medication use in aged care residents during the last year of life in order to examine key concepts related to medication safety and draw implications for further research and service provision. DESIGN: A scoping review following Arskey and O'Malley's framework was conducted using a targeted keyword search, followed by assessments of eligibility based on title and content of abstracts and full papers. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the scoping review protocol was prospectively registered to the Open Science Framework on 27 November 2018. DATA SOURCES: We searched MEDLINE, EMBASE, AMED, CINAHL and Cochrane databases to identify peer-reviewed studies published between 1937 and 2018, written in English and looking at medication use in individuals living in aged care facilities within their last year of life. RESULTS: A total of 30 papers were reviewed. Five key overarching themes were derived from the analysis process: (1) access to medicines at the end of life, (2) categorisation and classes: medicines and populations, (3) polypharmacy and total medication numbers, (4) use of symptomatic versus preventive medications and (5) 'inappropriate' medications. CONCLUSION: Number of prescriptions or blunt categorisations of medications to assess their appropriateness are unlikely to be sufficient to promote well-being and medication safety for older people in residential aged care in the final stages of life.

Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Wha Older person's Palliative Care Model.

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

Symptomatic Events in a Community Palliative Care Population: A Prospective Pilot Study.

Background: The palliative care population is prescribed a large number of drugs, increasing as patients deteriorate. The cumulative effects of these medications combined with underlying symptom burden can result in significant morbidity. There is an urgent need to describe possible symptomatic events that could be exacerbated by commonly prescribed drugs in palliative care and their impact. Objectives: To trial the feasibility and acceptability of determining baseline symptomatic event rates for community palliative care patients from which a composite measure of symptomatic events can be developed. Design: This prospective pilot study of patient-reported symptomatic events recruited a convenience cohort of 27 community palliative care patients in a metropolitan specialist palliative care service in Australia. Results: This study has demonstrated a high prevalence rate of symptomatic events (total crude event/participant day rate 0.87) in the study population. Conclusion: Data collection of patient-centered symptomatic events was acceptable and feasible to participants. This pilot supports a fully powered study.

Fundamental care for people with cognitive impairment in the hospital setting: A study combining positive organisational scholarship and video-reflexive ethnography.

AIMS AND OBJECTIVES: To clarify how high-quality fundamentals of care for people with dementia and/or delirium were practised in a specialist geriatric evaluation and management unit. BACKGROUND: Older people with cognitive impairment represent a significant number of people who are admitted to hospital. They are at increased risk of dying, readmission and long hospital stays, relative to those without cognitive impairment. There is an urgent need to elucidate the conditions that underpin safe and high-quality fundamental care for these patients and their families. METHODS: Using the innovative methodologies of positive organisational scholarship in healthcare and video-reflexive ethnography, this 18-month study was conducted within an inpatient geriatric evaluation and management unit for people with dementia and/or delirium in South Australia. Patients, family members and staff members (managerial, clinical and nonclinical) participated by allowing researchers to document ethnographic fieldwork notes and film their practices and/or accounts thereof; and/or interpreting digital recordings with researchers in order to make sense of data in a process of co-analysis. This study is reported using Standards for Reporting Qualitative Research reporting guidelines. RESULTS: High-quality fundamental care for people with dementia and/or delirium in hospital and their families was associated with the special space of the hospital unit; an aptitude for people with dementia; a capacity to translate person-centred fundamentals of care from rhetoric to reality; and an appreciation for teamwork. CONCLUSION: This study clarified how teams working in hospital can practise high-quality fundamentals of care for older people with dementia and/or delirium. Delivery of high-quality fundamental care in this setting was dependent, not only on nurses, but the entire ward team working cohesively in a "weave of commitment." RELEVANCE TO CLINICAL PRACTICE: Efforts to improve fundamental care for people with cognitive impairment need to encompass values and philosophy of person-centred care, including the contributions by all staff to care delivery.