"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.

Obstetric and neonatology nurses' attitudes, beliefs, and practices related to the management of symptoms of maternal depression.

Although maternal depression is a common emotional disorder, assessment and intervention rates are low. Using a cross-sectional survey design, we examined attitudes, beliefs, and practices of obstetrical and neonatology nurses toward the management of symptoms of maternal depression (SMD). Nurses believed they were responsible to assess for SMD and intervene with women showing SMD. However, only 50% assessed for SMD at least once monthly. Identified barriers to care were: lack of time, training, language, and patient and family beliefs. NICU nurses reported lower confidence, knowledge, and skills, than other nurses who participated in this study. This study shows there is a need to enhance nurses? confidence in assessing and intervening with SMD, and to clarify the referral process.

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.

Personhood: An evolutionary concept analysis for nursing ethics, theory, practice, and research.

BACKGROUND: The purpose of this concept analysis was to examine how the concept of personhood has been used in the nursing literature. The person is central to nursing, as the object of nursing work, or care, and a key element of theory. Health and illness confront conventional notions of personhood based on the Western philosophy, in delineating boundaries of life and death, and grappling with pathophysiological changes and alterations in capacities that challenge our understandings of what makes a person whole. METHODS: Rodgers' evolutionary method was selected; it emphasizes the relationship between concepts, language, and communities of users. A literature search between 1950 and 2017 generated 760 articles; 54 were retained for analysis. RESULTS: Four themes were identified: (1) personhood and nursing ethics, emphasizing scientific advances, and establishing criteria; (2) personhood as a morally significant, relational process realized through nursing care; (3) personhood lost (or neglected); (4) interventions aimed at understanding, recognizing, and enhancing personhood. Related terms, antecedent concepts, and consequences are explored. CONCLUSIONS: This preliminary view of personhood in the nursing literature demonstrated how the concept has been developed, used, and understood. Areas for future research include nursing ethics, theory, and clinical practice, as well as links with other academic disciplines.

Difficulties in performing clinical trials of antithrombotic therapy in neonates and children.

The practice of evidence-based medicine is based on the results of properly designed, conducted and analyzed studies. Evidence for the safety and efficacy of therapies is established through clinical trials. However, there are a number of difficulties in the design and management of clinical trials in children. We explore the theoretical and ethical issues and difficulties of designing and conducting clinical trials in children, and illustrate the ways in which these challenges were encountered in two clinical trials assessing anticoagulant therapy in children with thrombophilia (PROTEKT (PROphylaxis of ThromboEmbolism in Kids Trial) and REVIVE (REVIparin in Venous ThromboEmbolism)). Means for overcoming these challenges are also addressed.

Pediatric stroke initiatives and preliminary studies: What is known and what is needed?

Cerebrovascular disorders are increasingly recognized as important causes of mortality and morbidity in the pediatric population. However, there have been no clinical trials performed to assess the safety and tolerability of acute interventions or secondary preventative treatments. In 2002, the International Pediatric Stroke Study was launched to create a network of investigators, with an interest in developing standards of practice, as well as design and implement the first-ever clinical trials in pediatric stroke. This article reviews existing studies in pediatric stroke epidemiology, risk factors, outcomes, as well as experience with antithrombotic trials in children. From there, current and future initiatives in the development of clinical trials in pediatric stroke are evaluated.

Neonatal arterial ischemic stroke and cerebral sinovenous thrombosis are more commonly diagnosed in boys.

The risk factors for arterial ischemic stroke and cerebral sinovenous thrombosis in neonates are not well understood. We looked at gender, birthweight, and gestational age in neonates with arterial ischemic stroke and cerebral sinovenous thrombosis to see if there were trends suggesting that these were risk factors. We identified neonates with a gestational age at birth > or = 36 weeks and a diagnosis of arterial ischemic stroke or cerebral sinovenous thrombosis made by computed tomography or magnetic resonance imaging during the neonatal period from a consecutive cohort study of children with arterial ischemic stroke and cerebral sinovenous thrombosis in Ontario. Data on gender, birthweight, and gestational age were obtained by health record review. Sixty-six children with neonatal arterial ischemic stroke were identified. Forty-one (62.1%; 95% CI 49.3-73.8%) were male. Thirty-two children with neonatal cerebral sinovenous thrombosis were identified. Twenty-five (78.1%; 95% CI 60.0-90.7%) were male. One male child was identified with both arterial ischemic stroke and cerebral sinovenous thrombosis. There was a trend toward higher than average birthweights among neonates with arterial ischemic stroke and a trend toward older gestational age in female neonates with arterial ischemic stroke. Our data suggest that neonatal arterial ischemic stroke and cerebral sinovenous thrombosis are more commonly diagnosed in boys. The slightly larger size of male neonates may be contributory in arterial ischemic stroke. It is not known whether boys are at higher risk of developing arterial ischemic stroke and cerebral sinovenous thrombosis or are simply more likely to present with symptoms resulting in diagnosis. These issues need further study.