"More Areas of Grey": Ambiguities in Neuropalliative Care.

Neuropalliative care as a clinical speciality aims to address the unique end-of-life needs and concerns of patients with neurologic disease. Although literature has outlined clinical hurdles, a more nuanced understanding of how neuropalliative care was experienced, conceptualized, and enacted could provide context and depth to better outline practice and research priorities. This article presents findings from an ethnographic study of neuropalliative care conducted in a university-affiliated, tertiary care neurological hospital in Canada with a dedicated neuropalliative consultation service.

"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.

In-Home Respite Care Services Available to Families With Palliative Care Needs in Quebec: Novel Digital Environmental Scan.

Background: Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality.

Information and Communication Technologies to Support the Provision of Respite Care Services: Scoping Review.

Background: Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services.

"Informal Caregiver" in Nursing: An Evolutionary Concept Analysis.

The informal caregiver experience has surged as a research topic in health care, including in nursing. However, the "informal" language is controversial, lacking conceptual clarity. Without a common understanding of who an "informal caregiver" may be, nurses may fail to consistently identify informal caregivers requiring support.

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study.

Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses.

Visitor Restrictions, Palliative Care, and Epistemic Agency: A Qualitative Study of Nurses' Relational Practice During the Coronavirus Pandemic.

Efforts to curb spread of COVID-19 has led to restrictive visitor policies in healthcare, which disrupt social connection between patients and their families at end of life. We interviewed 17 Canadian nurses providing palliative care, to solicit their descriptions of, and responses to, ethical issues experienced as a result of COVID-19 related circumstances. Our analysis was inductive and scaffolded on notions of nurses' moral agency, palliative care values, and our clinical practice in end-of-life care.

Creating Empowering Conditions for Nurses with Workplace Autonomy and Agency: How Healthcare Leaders Could Be Guided by Strengths-Based Nursing and Healthcare Leadership (SBNH-L).

The COVID-19 pandemic had the unintended consequence of placing nurses in the spotlight because their knowledge and skills were in desperate need. While it will be years until we fully understand the impact that this pandemic has exacted on the nursing workforce, early studies have found that nurses have been traumatized by this event and many intend to leave the profession This seismic event only further exacerbated an already vulnerable and strained nursing workforce that pre-existed worldwide prior to COVID-19. The pandemic also highlighted the many challenges facing nursing leadership, in particular, how to create conditions to maintain and sustain a healthy nursing workforce.

Survey of palliative care providers' needs, perceived roles, and ethical concerns about addressing cancer family history at the end of life.

Objective: Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers' views on their main needs, roles, and ethical concerns regarding cancer family history discussions.

A hermeneutic-phenomenological study of paediatric intensive care unit nurses' professional identity following hospital redesign: Lessons learned for managers.

Aim: To provide insights for health care managers by exploring paediatric intensive care unit nurses' lived experience of professional identity in the context of organisational change.

Background: While professional identity improves retention of nurses and provision of quality care, outcomes of importance for managers, organisational change perturbs this identity.

Method: The study used a hermeneutic-phenomenological design.

When the paediatric intensive care unit becomes home: A hermeneutic-phenomenological study.

Background: Family-centred care is the dominant model for providing nursing care in paediatrics. Unit layout has been shown to impact nurses' ability to provide family-centred care. Little is known about the meanings and experiences of paediatric intensive care unit nurses concerning the care they provide to families within their unique physical setting.

What do cancer patients' relatives think about addressing cancer family history and performing genetic testing in palliative care?

Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients' relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients' relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings.

Impact of unit design on intensive care unit clinicians: a scoping review protocol.

Objective: This scoping review aims to identify the known impact of unit design on intensive care unit clinicians, and more specifically, to explore similarities and differences across critical care settings.

Introduction: Construction and infrastructure renewal represent great opportunities for designing units that enhance patient care, as well as support the work of clinicians. A growing body of evidence is showing how unit design can impact clinical staff, but no reviews have been found that focus exclusively on clinicians within intensive care units.

OA8 Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing.

Background: Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers.

Encouraging patients and families to influence change on a palliative care unit: value of patient satisfaction surveys.

This article describes how a series of patient satisfaction surveys on a palliative care unit were used to help influence the care provided to patients and their families. Innovative interventions aimed at addressing areas of lower satisfaction identified in the initial survey are described. The results from a follow-up survey provided the opportunity to evaluate whether our interventions were effective in improving patient satisfaction and highlight new areas of concern needing to be addressed.