"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.

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. METHOD: The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted. RESULTS: Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients' concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members. SIGNIFICANCE OF RESULTS: Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers' needs might help optimize cancer predisposition management in palliative care.

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. Data were collected via individual interviews, photographs, participant observation and document review. A purposive sampling strategy was used to recruit paediatric intensive care unit nurses (n = 15) in a large Canadian paediatric hospital. RESULTS: Nurses' critical care identity eroded in this organisation due to the interplay between hospital redesign and new eligibility criteria for patient admissions. CONCLUSION: Interactions between multiple projects and the unit context, as well as nursing professional identity, need to be considered early on during project planning. This study fills an important gap in research concerning the management challenges brought about by the intersection of multiple changes. IMPLICATIONS FOR NURSING MANAGEMENT: The results from this study bring to light three important lessons for nurse managers: 1) the specific unit context should be evaluated before a project is initiated; 2) the physical environment needs to be considered when determining staffing requirements; and 3) identity transitions need to be managed.

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. AIM: This study examined paediatric intensive care unit nurses' lived experience of caring for families following a major hospital transformation project, which included the construction of a new unit and quality improvement changes. STUDY DESIGN: A hermeneutic-phenomenological design was selected to study a paediatric intensive care unit in a large Canadian paediatric teaching hospital. METHODS: Data were collected over a 6-month period through individual interviews, photographs, participant observation, and document review. The sample consisted of 15 paediatric intensive care unit nurses who experienced the unit both pre- and post-transformation. Data were analysed in an ongoing fashion using the method described by Benner to identify common and divergent meanings. RESULTS: Despite pride in offering a family-friendly environment, nurses' practice prejudiced a family focus in favour of patient-centred care. Nurses in this study negotiated physical and practice spaces with families by interpreting that nurses do not belong in the home-like patient room and exhibiting gatekeeping comportments. CONCLUSION: Although similar nurse comportments have been identified in prior works, no previous studies have identified these as forming a pattern of negotiating spaces with families. RELEVANCE TO CLINICAL PRACTICE: This study provides insights into the lived experience of paediatric intensive care unit nurses in relation to family care, which can stimulate reflections at an organizational level about creating environments where nurses and families can both feel at home.

Engaging with patients who desire death: Interpretation, presence, and constraint.

Canadian end-of-life care is changing. Given recent legislative changes concerning assisted death (euthanasia and assisted suicide), it is vital to examine the perspectives of nurses regarding their care of patients who want to die. This qualitative descriptive study reports findings from interviews with 11 oncology nurses about their experiences of engaging with patients who desire death. Findings provide important insights about how oncology nurses interpret patients' desire-for-death and enact therapeutic presence with these patients. Findings further speak to contextual forces that constrain therapeutic engagement. Interviews were conducted before laws changed in Canada, generating insights that are relevant now more than ever, as increasing numbers of patients will contemplate and receive assisted death in the new landscape of Canadian end-of-life care.

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. OBJECTIVE: This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking. METHODS: A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized. RESULTS: A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services. CONCLUSIONS: Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.

"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. Therefore, a concept analysis of "informal caregiver" was conducted on the basis of a sample of 20% of relevant nursing literature. The analysis of the attributes, antecedents, consequences, and contexts associated with "informal caregiver" offers a foundational guide for the ongoing development of nurses' understanding of the informal caregiver role.

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. However, an understanding of the use of ICTs and research in this area is lacking. OBJECTIVE: The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services. METHODS: A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative. RESULTS: A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services. CONCLUSIONS: There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services.

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.

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. Nurses' job satisfaction has emerged as an important predictor of whether nurses remain in an organization and stay in the profession. When examined more closely, job satisfaction has been related to nurses feeling empowered to exercise autonomy over their own practice and having agency. Autonomy and agency, in turn, are affected by their managers' leadership styles. Leaders are instrumental in setting the tone and creating the climate and culture that either values or devalues autonomy and agency. To help leaders create empowering conditions, we have developed a guide for leaders. This guide, based on the value-driven philosophy of leadership called Strengths-Based Nursing and Healthcare Leadership (SBNH-L), is founded on principles of person-centered, empowerment, relationship-focused, and innate capacities (ie, strengths) that are operationalized in eight core values. This guide can be used by leaders as their roadmap to create empowering workplace conditions that value and facilitate nurses' autonomy and agency.

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. Our findings reveal that while participants appreciated the need for pandemic measures, they found blanket policies separating patients and families to be antithetical to their philosophy of palliative care. In navigating this tension, nurses drew on the foundational values of their practice, engaging in ethical reasoning and action to integrate safety and humanity into their work. These findings underscore the epistemic agency of nurses and highlight the limits of a purely biomedical logic for guiding the nursing ethics of the pandemic response.

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. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. OBJECTIVE: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. METHODS: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. RESULTS: We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/34652.

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. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients' request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients' relatives might need to be considered on a case-by-case basis.

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. INCLUSION CRITERIA: The review will consider studies that include healthcare staff who offer direct patient care in adult or pediatric intensive care units. Studies that focus on the impact of design (related to physical environment features) on clinicians will be included. METHODS: The proposed systematic review will be conducted in accordance with JBI methodology for scoping reviews. The search strategy aims to find published and unpublished studies. The databases to be searched will include Embase MEDLINE, PsycINFO, Healthstar and CINAHL. Retrieved studies will be assessed against the inclusion criteria by two independent reviewers. For the papers included in the scoping review, data will be extracted and quality assessed by two independent reviewers. The extracted data will be presented in tabular form, and a narrative summary will describe how the results relate to the review objective.

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. AIM: To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. METHOD: A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. RESULTS: Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). CONCLUSION: Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.