"We are not the person we will be when these things happen:" Reflections on personhood from an ethnography of neuropalliative care.

Neuropalliative care developed to address the needs of patients living with life-limiting neurologic disease. One critical consideration is that disease-related changes to cognition, communication, and function challenge illness experiences and care practices. We conducted an ethnography to understand neuropalliative care as a phenomenon; how it was experienced, provided, conceptualized. Personhood served as our conceptual framework; with its long philosophical history and important place in nursing theory, we examined the extent to which it captured neuropalliative experiences and concerns. Personhood contextualized complex losses, aligning the impact of functional and relational changes. Cognition, communication, and functional alterations stretched conceptions of personhood, insinuating it can be relational, fluid, adaptive. Although normative conceptions of personhood guided research and decision-making, ethical considerations suggested personhood could be transformed, remade. We consider the implications of our findings through three themes. First, we examine how literature on illness experience fails to integrate the realities of people living with and dying from neurologic disease; we counter this by interrogating the concept of experience. Second, we turn to Ricoeur's work on recognition to illuminate relational conceptions of personhood to inform care practices. Finally, we reflect on how personhood can bridge the gap left by functional changes, enhance relational engagement, and promote dignity at the end of life.

Assessing the risk of a clinically significant infection from a Microneedle Array Patch (MAP) product.

Microneedle Array Patches (MAPs) are an emerging dosage form that creates transient micron-sized disruptions in the outermost physical skin barrier, the stratum corneum, to facilitate delivery of active pharmaceutical ingredients to the underlying tissue. Numerous MAP products are proposed and there is significant clinical potential in priority areas such as vaccination. However, since their inception scientists have hypothesized about the risk of a clinically significant MAP-induced infection. Safety data from two major Phase 3 clinical trials involving hundreds of participants, who in total received tens of thousands of MAP applications, does not identify any clinically significant infections. However, the incumbent data set is not extensive enough to make definitive generalizable conclusions. A comprehensive assessment of the infection risk is therefore advised for MAP products, and this should be informed by clinical and pre-clinical data, theoretical analysis and informed opinions. In this article, a group of key stakeholders identify some of the key product- and patient-specific factors that may contribute to the risk of infection from a MAP product and provide expert opinions in the context of guidance from regulatory authorities. Considerations that are particularly pertinent to the MAP dosage form include the specifications of the finished product (e.g. microbial specification), it's design features, the setting for administration, the skill of the administrator, the anatomical application site, the target population and the clinical context. These factors, and others discussed in this article, provide a platform for the development of MAP risk assessments and a stimulus for early and open dialogue between developers, regulatory authorities and other key stakeholders, to expedite and promote development of safe and effective MAP products.

"We're Cancer Care Nurses": Perceptions About Providing Palliative Care in a Community Hospital.

Nurses play a key role in integrating palliative care into oncology. This project sought to better understand oncology nurses' perspectives about palliative care. Nurses from a community hospital were presented with a series of clinical scenarios and asked to comment on the appropriateness of palliative care in each case. A series of focus groups were held, inviting nurses' reflections about palliative care in relation to their practice. Nurses commenting on the clinical scenarios were unanimous that palliative care was appropriate in the most straightforward case: older adult, approaching the terminal phase of a cancer, having exhausted all curative treatment options, accepting death, wanting comfort, and contending with difficult symptoms. However, opinions on appropriateness varied in less straightforward cases, such as when patients did not accept death or when their cancer diagnosis was recent. In focus groups, nurses described a hybrid professional identity that integrates both oncology and palliative care. To them, this integration constituted the meaning of "cancer care." They further reflected on tensions they experience between their proximity to patients in everyday care and their (in)abilities to meet palliative care needs. Results suggest the need for stronger institutional supports of cancer nurses' palliative practice.

Covid-19 and non-communicable diseases (NCDs) in Africa: a narrative review.

Coronavirus disease 2019 popularly known as COVID-19 is the current pandemic ravaging the world. It has disrupted so many aspects of humans' life including the healthcare systems of all countries. While governments have instituted preventive measures such as social distancing, self-isolation and lockdown in a bid to control the spread of the virus, the absence of vaccine can lead to poor management of key risk factors (including unhealthy diets and physical inactivity) associated with NCDs and limited access to preventive health services can further contribute to development and progression of NCDs. This study provides a review of available evidences from PubMed, google scholar, online databases, and papers from other sources on the impact of COVID-19 pandemic on NCDs in Africa and emphasizes lessons from past pandemics that can be adopted to reduce the burden of the disease.

Is progress being made on Canada's palliative care framework and action plan? A survey of stakeholder perspectives.

BACKGROUND: The legalization of Medical Assistance in Dying in Canada in 2016 provided new impetus for improving palliative care. This commitment to improvement included the development of a National Palliative Care Framework and Action Plan. The purpose of this study was to understand the progress made in palliative care since 2016 from the perspective of persons working and volunteering in palliative care and compare geographic differences. METHODS: A digital survey was developed from goals identified in Canada's Palliative Care Framework and Action Plan and administered online using Qualtrics. Participants were recruited through national palliative care organizations. The survey included both quantitative survey items designed to evaluate improvements across 5 domains and 29 items and included open-ended questions about impacts, innovations, and ongoing challenges. Descriptive statistics were generated for survey domains, items, and demographic variables. Geographic differences were compared using Independent-Samples Kruskal-Wallis test. Qualitative data was analyzed inductively into themes. RESULTS: One hundred fifty surveys met inclusion criteria and were analysed. Overall, the most improvement was reported in palliative care education and the least improvement was reported in support for family caregivers. Items on which respondents reported the most improvement included healthcare provider education in palliative care, advance care planning, and use of technology. Items on which respondents reported the least improvement were respite for family caregivers, access to bereavement services, and in-home support for family caregivers. Notably, rural participants reported more statistically significant improvements in the domains of education, access, and research and data collection than their urban counterparts. However, rural participants reported less improvement in places to die when home is not preferable. The COVID-19 pandemic was a significant contributor to these perceived improvements and ongoing challenges. CONCLUSION: Canada's Framework and Action Plan sets out a roadmap for improving palliative care in Canada. Participants in this survey noted significant improvements in key areas, a notable accomplishment amidst the effects of the COVID-19 pandemic. Some improvements were a result of greater use of distance technology. Further leveraging these improvements will make an important contribution to solving some of the rural and remote palliative care issues that have arisen from Canada's unique geography.

ISGylation is induced in neurons by demyelination driving ISG15-dependent microglial activation.

The causes of grey matter pathology and diffuse neuron injury in MS remain incompletely understood. Axonal stress signals arising from white matter lesions has been suggested to play a role in initiating this diffuse grey matter pathology. Therefore, to identify the most upstream transcriptional responses in neurons arising from demyelinated axons, we analyzed the transcriptome of actively translating neuronal transcripts in mouse models of demyelinating disease. Among the most upregulated genes, we identified transcripts associated with the ISGylation pathway. ISGylation refers to the covalent attachment of the ubiquitin-like molecule interferon stimulated gene (ISG) 15 to lysine residues on substrates targeted by E1 ISG15-activating enzyme, E2 ISG15-conjugating enzymes and E3 ISG15-protein ligases. We further confirmed that ISG15 expression is increased in MS cortical and deep gray matter. Upon investigating the functional impact of neuronal ISG15 upregulation, we noted that ISG15 expression was associated changes in neuronal extracellular vesicle protein and miRNA cargo. Specifically, extracellular vesicle-associated miRNAs were skewed toward increased frequency of proinflammatory and neurotoxic miRNAs and decreased frequency of anti-inflammatory and neuroprotective miRNAs. Furthermore, we found that ISG15 directly activated microglia in a CD11b-dependent manner and that microglial activation was potentiated by treatment with EVs from neurons expressing ISG15. Further study of the role of ISG15 and ISGylation in neurons in MS and neurodegenerative diseases is warranted.

Blowing the whistle during the first wave of COVID-19: A case study of Quebec nurses.

The experiences of nurses who blew the whistle during the COVID-19 pandemic have exposed gaps and revealed an urgent need to revisit our understanding of whistleblowing. AIM: The aim was to develop a better understanding of whistleblowing during a pandemic by using the experiences and lessons learned of Quebec nurses who blew the whistle during the first wave of COVID-19 as a case study. More specifically, to explore why and how nurses blew the whistle, what types of wrongdoing triggered their decision to do so and how context shaped the whistleblowing process as well as its consequences (including perceived consequences). DESIGN: The study followed a single-case study design with three embedded units of analysis. METHODS: We used content analysis to analyse 83 news stories and 597 forms posted on a whistleblowing online platform. We also conducted 15 semi-structured interviews with nurses and analysed this data using a thematic analysis approach. Finally, we triangulated the findings. RESULTS: We identified five themes across the case study. (1) During the first wave of COVID-19, Quebec nurses experienced a shifting sense of loyalty and relationship to workplace culture. (2) They witnessed exceedingly high numbers of intersecting wrongdoings amplified by mismanagement and long-standing issues. (3) They reported a lack of trust and transparency; thus, a need for external whistleblowing. (4) They used whistleblowing to reclaim their rights (notably, the right to speak) and build collective solidarity. (5) Finally, they saw whistleblowing as an act of moral courage in the face of a system in crisis. Together, these themes elucidate why and how nurse whistleblowing is different in pandemic times. CONCLUSION: Our findings offer a more nuanced understanding of nurse whistleblowing and address important gaps in knowledge. They also highlight the need to rethink external whistleblowing, develop whistleblowing tools and advocate for whistleblowing protection. IMPACT: In many ways, the COVID-19 pandemic has challenged our foundational understanding of whistleblowing and, as a result, it has limited the usefulness of existing literature on the topic for reasons that will be brought to light in this paper. We believe that studying the uniqueness of whistleblowing during a pandemic can address this gap by describing why and how health care workers blow the whistle during a pandemic and situating this experience within a broader social, political, organizational context.

A National Study of Adult Women Sexually Abused by Clergy: Insights for Social Workers.

Given the paucity of research on the experiences of women who are sexually abused by clergy as adults and the advent of the #ChurchToo movement in 2017, the results of a mixed-methods national study highlight the experiences of those who survived the abuse and report on what factors are most healing in their recovery. Internet-based surveys with both quantitative and qualitative items were completed by 159 respondents. Less than 10 percent reported receiving help and support from their congregation after they reported the abuse, and about half of the respondents were blamed for the abuse and ignored by people in their congregations. In spite of the poor responses from their churches, these respondents reported positive beliefs regarding their ability to recover and heal. Mental health counseling was listed as a primary mechanism for healing. Multiple regression was used to develop a model of resilience. Faith in God was the most salient predictor. Those who survived sexual abuse need social workers who can navigate the complex set of factors and issues at the intersection of religion/spirituality, mental health treatment, and policy advocacy, including the ability to see what has been helpful about religious experiences and what has not.

What's suffering got to do with it? A qualitative study of suffering in the context of Medical Assistance in Dying (MAID).

BACKGROUND: Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses' perspectives. METHODS: A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. RESULTS: Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. CONCLUSIONS: Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices.

Navigating medical assistance in dying from Bill C-14 to Bill C-7: a qualitative study.

BACKGROUND: Even as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition. METHODS: This qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent. FINDINGS: Participants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons' eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system. CONCLUSIONS: Significant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.

"Reflection and soul searching": Negotiating nursing identity at the fault lines of palliative care and medical assistance in dying.

Authorities within the field of palliative care frequently espouse that assisted death is - and must remain - separate from palliative care. This fault line, between palliative care and assisted death, has important implications for how we enact end-of-life care, particularly in jurisdictions where assisted death is legal. And yet little is known about how direct-care clinicians providing palliative care navigate this demarcation in everyday practice. This qualitative study reports on semi-structured interviews with 22 palliative care nurses from across Canada, where assisted death was legalized in 2016. Although a minority of participants did express categorical opinions around the (non) legitimacy of assisted death as an ethical end-of-life care option, most engaged in an ongoing and sometimes painful process of questioning and self-examination. Their ethical reflections were more nuanced than simply dismissing MAiD as incompatible with palliative care philosophy; yet this idea of incompatibility weighed heavily as they reasoned through their experiences and questioned their own perspectives. Nurses described grappling with the finality of assisted death, which contradicts their belief in the telos of palliative care; when adequately resourced, palliative care should be available to support people to live well before death. At the same time, commitment to important palliative care values such as the non-abandonment of dying people and respecting peoples' individual end-of-life choices reveal the possibility of overlap between the ethos of assisted death and that of palliative care nursing. Drawing on scholarship in feminist ethics, our study sheds light on the moral identity work that assisted dying catalyzes amongst palliative care nurses. We highlight what is at stake for them as they navigate a delicate tension in responding ethically to patients whose suffering motivates an interest in assisted death, from within a wider professional collective that upholds a master narrative about the incompatibility of assisted death and palliative care.

Centering sexual and gender diversity within Compassionate Communities: insights from a community network of LGBTQ2S+ older adults.

BACKGROUND AND RATIONALE: The Compassionate Communities movement emphasizes the importance of illness, disability, dying, caregiving, and grief across the lifespan and highlights the communal responsibility of caring for one another. There is a need to recognize and incorporate the needs of diverse communities within this movement and research on dying, caregiving and grief. An important axis of this diversity is related to individuals' sexual orientation and gender identity. METHODS: As part of the early phases of Healthy End of Life Project Ottawa, a Compassionate Communities, community-based, participatory action research project, we held focus groups with older members of lesbian, gay, bisexual, transgender, queer, and two-spirit communities. Nine older lesbian, gay, bisexual, transgender, queer, and two-spirit people participated in the focus groups (mean age = 72 years). Data were analysed using an inductive, reflexive thematic approach. RESULTS: Through an iterative analysis process, we identified themes related to lifecourse experiences of trauma, the need for safety within care contexts, the importance of relationships and connection, as well as participants' ability to ask for and receive help. A core tenet of Compassionate Communities involves responding to the needs of diverse communities with respect to aging, end-of-life, and grief. Our findings emphasize the importance of incorporating the voices of diverse sexual and gender identities and promoting health equity within Compassionate Community initiatives.

Trans-affirming care: An integrative review and concept analysis.

BACKGROUND: Contemporary healthcare exists within a cisnormative landscape which underpins the erasure of trans persons in healthcare, health research, and health education, and results in negative experiences and poorer outcomes. Further, nurses report feeling inadequately prepared to provide affirming care to trans patients, with little guidance available to inform their practice. OBJECTIVE: To explore the conceptual understanding of trans-affirming care as it pertains to nursing, and to provide recommendations for trans-affirming nursing care at the systemic, organizational, and individual level. METHODS: A systematic search of the literature was completed using standard review processes. Two reviewers independently applied a two-step study selection procedure to identify eligible citations. Walker and Avant's concept analysis method was used to analyze the extracted data to determine antecedents, defining attributes, empirical referents, and consequences. RESULTS: Of the 5914 studies, 136 met criteria, representing a variety of clinical settings. The antecedents identified were depathologization of gender variance and cultural humility. The defining attributes were patient-led care, trans-affirming culture, and trans-competent providers. The consequences were improved psychological and physical health outcomes. CONCLUSIONS: Trans persons and communities are becoming more visible in society, as are their testimonials about their substandard treatment within healthcare systems. Nurses need to respond to these health inequities with self-reflection, advocacy, and education. At the center of this work is the concept of trans-affirming care, which is a philosophy of care specific to trans persons. Tweetable abstract: This article offers an evidence-informed definition of trans-affirming care and recommendations for how it can be operationalized by nurses.

Increased Risk of Death Triggered by Domestic Violence, Hunger, Suicide, Exhausted Health System during COVID-19 Pandemic: Why, How and Solutions.

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections, just like many other public health emergencies, is a well-established global health burden that has resulted in several changes in routines and lifestyles of people globally. The coronavirus disease (COVID-19) pandemic, caused by SARS-CoV-2, has directly or indirectly involved in the loss of lives of more than 3.24 million as of 6th May, 2021. The increasing threats posed by this pandemic were subsided by the swift and drastic measures put in place by different countries. As other causes of death before the emergence of COVID-19 still exist, the pandemic has further worsened their impact. The increased risks of COVID-19 deaths are not only due to the health burden it possesses, but also due to some other factors. These factors include domestic violence that becomes rampant, especially during lockdowns; hunger due to low economic development, unemployment, and loss of jobs; suicide due to depression; exhausted health system due to high level of COVID-19 cases and inability to contain it. As we move from the response phase into recovery, the pandemic's direct and broader impacts on individuals, households, and communities will influence the capacity to recover. An understanding of these impacts is therefore required to develop priorities to support recovery. This paper identifies other causes of death amidst the pandemic, such as domestic violence, hunger, suicide, and exhausted health system, and how to minimize their effects.

Immune-regulated IDO1-dependent tryptophan metabolism is source of one-carbon units for pancreatic cancer and stellate cells.

Cancer cells adapt their metabolism to support elevated energetic and anabolic demands of proliferation. Folate-dependent one-carbon metabolism is a critical metabolic process underpinning cellular proliferation supplying carbons for the synthesis of nucleotides incorporated into DNA and RNA. Recent research has focused on the nutrients that supply one-carbons to the folate cycle, particularly serine. Tryptophan is a theoretical source of one-carbon units through metabolism by IDO1, an enzyme intensively investigated in the context of tumor immune evasion. Using in vitro and in vivo pancreatic cancer models, we show that IDO1 expression is highly context dependent, influenced by attachment-independent growth and the canonical activator IFNγ. In IDO1-expressing cancer cells, tryptophan is a bona fide one-carbon donor for purine nucleotide synthesis in vitro and in vivo. Furthermore, we show that cancer cells release tryptophan-derived formate, which can be used by pancreatic stellate cells to support purine nucleotide synthesis.

Neuropalliative care: An integrative review of the nursing literature.

BACKGROUND: In the last few decades, research and clinical care have attempted to identify and meet the palliative care needs, concerns and challenges of patients of all ages with neurologic disease, under the newly defined subspecialty of neuropalliative care. However, the role of nurses in care organization and provision, as well as nursing priorities with regards to the needs and concerns of patients and families, have not been well articulated. The purpose of this review is to outline priorities in neuropalliative care nursing and examine what questions have been investigated to date. METHODS: The integrative review approach was used to produce an analysis of existing nursing literature on neuropalliative care. As the broadest of research review methods, integrative review includes experimental and non-experimental research, as well as theoretical work, allowing us to engage with concepts and evidence from multiple perspectives. RESULTS AND DISCUSSION: Six themes of concern for nursing care and research were identified: (1) managing a heavy symptom burden, (2) unmet care needs, (3) the need for care pathways and protocols, (4) caregiver burden, (5) poor recognition of the dying, and (6) the impact of communication and cognition changes. An analysis and critique of the literature yielded the following recommendations for clinical and research priorities: (1) a paradigm shift in how neurologic disorders is perceived and managed, (2) redefining the scope of neuropalliative care and services, (3) understanding and addressing the needs of family members and caregivers and including them in assessments, care planning and provision; (4) having the difficult conversations and asking the right questions. CONCLUSIONS: Nurses and nursing studies pay attention to things that matter to patients and their families. As the health professionals who spend the most time with patients and families at the bedside and in the community, nurses are well placed to build strong relationships, recognize needs and concerns, and recommend strategies and interventions to enhance comfort and alleviate suffering. In neuropalliative care nursing, this relational engagement becomes critical since patients experience changes to their cognition and communication as a result of disease progression. To enhance patient agency during a vulnerable time, methodologies to include patients who think and communicate differently in clinical care and research are urgently needed. Tweetable abstract: Neuropalliative nursing researchers call for better prognostication, recognition of the dying process, including patients in care decisions.

Assessing the spread of the novel coronavirus in the absence of mass testing.

BACKGROUND: Assessing why the spread of the COVID-19 virus slowed down in many countries in March through to May of 2020 is of great significance. The relative role of restrictions on behaviour ("lockdowns") and of a natural slowing for other reasons is difficult to assess when mass testing was not widely done. This paper assesses the evolution of the spread of the COVID-19 virus over this period when there was no data on test results for a large, random sample of the population. METHOD: We estimate a version of the susceptible-infected-recovered model applied to data on the numbers who were tested positive in several countries over the period when the virus spread very fast and then its spread slowed sharply. Up to the end of April 2020, test data came from non-random samples of populations who were overwhelmingly those who displayed symptoms. Using data from a period when the criteria used for testing (which was that people had clear symptoms) was relatively consistent is important in drawing out the message from test results. We use this data to assess two things: how large might be the group of those infected who were not recorded and how effective were lockdown measures in slowing the spread of the infection. RESULTS: We find that to match data on daily new cases of the virus, the estimated model favours high values for the number of people infected but not recorded. CONCLUSIONS: Our findings suggest that the infection may have spread far enough in many countries by April 2020 to have been a significant factor behind the fall in measured new cases. Government restrictions on behaviour-lockdowns-were only one factor behind slowing in the spread of the virus.