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Background: Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. Canada's legislation is the first to permit Nurse Practitioners (NP) to serve as independent MAiD assessors and providers. Registered Nurses' (RN) also have important roles in MAiD that include MAiD care coordination; client and family teaching and support, MAiD procedural quality; healthcare provider and public education; and bereavement care for family. Nurses have a right under the law to conscientious objection to participating in MAiD. Therefore, it is essential to prepare nurses in their entry-level education for the practice implications and moral complexities inherent in this practice. Knowing what nursing students think about MAiD is a critical first step. Therefore, the purpose of this study was to develop a survey to measure nursing students' knowledge, attitudes and beliefs, influences, and willingness to be involved in MAiD in the Canadian context. Methods: The design was a mixed-method, modified e-Delphi method that entailed item generation from the literature, item refinement through a 2 round survey of an expert faculty panel, and item validation through a cognitive focus group interview with nursing students. The settings were a University located in an urban area and a College located in a rural area in Western Canada. Results: During phase 1, a 56-item survey was developed from existing literature that included demographic items and items designed to measure experience with death and dying (including MAiD), education and preparation, attitudes and beliefs, influences on those beliefs, and anticipated future involvement. During phase 2, an expert faculty panel reviewed, modified, and prioritized the items yielding 51 items. During phase 3, a sample of nursing students further evaluated and modified the language in the survey to aid readability and comprehension. The final survey consists of 45 items including 4 case studies. Discussion: Systematic evaluation of knowledge-to-date coupled with stakeholder perspectives supports robust survey design. This study yielded a survey to assess nursing students' attitudes toward MAiD in a Canadian context. Conclusion: The survey is appropriate for use in education and research to measure knowledge and attitudes about MAiD among nurse trainees and can be a helpful step in preparing nursing students for entry-level practice. [ABSTRACT FROM AUTHOR]

Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence fathers' grief and culture impacts how individuals discuss death and dying as well as how they perceive the death of a child. This article is part of a qualitative research project, which examined the experiences of racialized immigrant fathers who experienced the death of a child. Guided by Charmaz's constructivist grounded theory, the methodological aim was to develop a theoretical framework grounded in fathers' experiences of child death within the hospital setting. Findings suggest that for racialized immigrant fathers their migration experience compounds their losses in unexpected ways and that experiences of objectification or 'othering' in hospital and by health care staff were significant. [ABSTRACT FROM AUTHOR]

Background: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. Aim: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. Design: Qualitative, thematic analysis, research using semi-structured interviews. Setting/participants: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. Results: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. Conclusions: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context. [ABSTRACT FROM AUTHOR]

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research. [ABSTRACT FROM AUTHOR]

Background: Improving equity and early access to palliative care for underserved populations in Canada is a priority. Little is known regarding access to palliative and end-of-life care in the Black population. Methods: We undertook a scoping review using the framework by Arksey and O'Malley to identify knowledge, access gaps, and experiences of palliative and end-of-life care among Blacks living with life-limiting illnesses in Canada. Primary studies, discussion papers, books, and reports were considered eligible. We followed a comprehensive search strategy developed by an information scientist. Searches were performed in the following bibliographic databases: Medline, EMBASE, PsycINFO via OVID, CINAHL via EBSCOhost, Scopus and Cochrane Library via Wiley. The search strategy was derived from three main concepts: (1) Black people; (2) Canada and Canadian provinces; (3) Palliative, hospice, or end-of-life care. No publication date or language limits were applied. Titles and abstracts were screened for eligibility by one reviewer and full text by two independent reviewers. Results: The search yielded 233 articles. Nineteen articles were selected for full-text review, and 7 articles met the inclusion criteria. These studies were published between 2010 and 2021, and conducted in the provinces of Ontario and Nova Scotia only. Studies used both quantitative and qualitative methods and included cancer decedents, next of kin, family caregivers and religious leaders. Sample sizes in various studies ranged from 6 − 2,606 participants. Included studies reported a general lack of understanding about palliative and end-of-life care, positive and negative experiences, and limited access to palliative and end-of-life care for Blacks, across all care settings. Conclusion: Findings suggest limited knowledge of palliative care and inequities in access to palliative and end-of-life care for Blacks living with life-limiting illnesses in 2 Canadian provinces. There is an urgent need for research to inform tailored and culturally acceptable strategies to improve understanding and access to palliative care and end-of-life care among Blacks in Canada. [ABSTRACT FROM AUTHOR]

Objective: To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes. Methods: A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada's Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 and 2019 were approached. Semi-structured interviews were conducted, using an online videoconferencing platform in mid-2021 in Ontario, Canada. These were done online, recorded, and transcribed. Data were coded inductively. Results: Ten persons were interviewed: four registered practical nurses, three registered nurses, one nurse practitioner, and two physicians. Some held leadership roles. Participants described ongoing impact on themselves and their ability to provide end-of-life (EOL) care (micro-level), their services and institutions (meso-level), and their healthcare systems (macro-level). At a micro-level, participants described increased knowledge and confidence to support residents and families, and increased work fulfillment. At the meso-level, their teams gained increased collective knowledge and greater interprofessional collaboration to provide palliative care. At the macro level, some participants connected with other LTC homes and external stakeholders to improve palliative care across the sector. Training provided much-needed preparedness to respond to the impact of the COVID-19 pandemic, including undertaking advance care planning and EOL conversations. The pandemic caused staff burnout and shortages, creating challenges to applying course learnings. Significance of results: The impact of palliative care training had ripple effects several years after completing the training, and equipped staff with key skills to provide care during the COVID-19 pandemic. Palliative care education of staff remains a critical element of an overall strategy to improve the integration of palliative care in LTC. [ABSTRACT FROM AUTHOR]

Background: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a Train-the-Trainer' model. Methods/design: In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions. [ABSTRACT FROM AUTHOR]

Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. Methods: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0–19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). Results: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. Conclusions: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada. [ABSTRACT FROM AUTHOR]

The population of older adults in Canadian society is aging and becoming more ethnically diverse. Some scholars have explored the lived experiences of older immigrants in Western societies; however, studies on widowhood experiences among older immigrants are extremely limited. By adopting an intersectionality framework, this study seeks to address this gap by examining the influences of age, gender, immigrant status, and ethnicity on the lived experience of widowed older Chinese immigrants in Calgary, Canada. Data were collected from twelve in-depth qualitative interviews and thematically analyzed. Older Chinese immigrants' widowhood experiences were located within intersections of multiple identities. Findings suggest that an intersectionality perspective could be used to better inform the development of social work practice and policy-making for older immigrants. [ABSTRACT FROM AUTHOR]

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement. [ABSTRACT FROM AUTHOR]

A review of palliative care policies and bereavement support practices in the United States, Canada, United Kingdom, Australia, and Japan demonstrated 4 challenges: questions over providing universal versus targeted support; a lack of clear evidence driving service delivery; informal or no risk assessment; and limited or no evaluation of services. Bridging the gaps between the policy and practice of palliative care bereavement support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions. [ABSTRACT FROM PUBLISHER]

The article focuses on the frequency and nature of the bereavement practices of medical oncologists (MOs), radiation oncologists (ROs) and palliative care specialists (PCs) in Canada. Survey involved Canadian MOs, ROs and PCs through their respective national organizations. About 535 of the 756 eligible physicians completed the survey with 33.3% of them indicating that they always make a telephone call or send a condolence card or attend a funeral following a patient's death. In addition, 30.5% claimed they perform at least one of these practices sometimes and 36.2% are those who practice rarely or never. Authors concluded that few cancer physicians provide bereavement follow-up.

Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose of this qualitative study was to investigate the lived experience of the dyad following a fetal death and capture the essence of the grief journey. Study design and methods: A hermeneutic phenomenological study was performed using van Manen's method for data collection and analysis. Semi-structured interviews were conducted via Zoom. Participants were recruited from national and local agencies providing education and resources about perinatal loss. Data analysis utilized the Dedoose software platform to track qualitative coding. Results: Ten dyads (20 individuals) from the United States and Canada participated. The data revealed four major themes with several subthemes. The major themes were as follows: "The child I'll never really know": Pregnancy loss grief; "You're on a rollercoaster, just hold on": The emotional journey; Climbing uphill: Barriers to healing ; and Resurfacing from grief: Healing after loss. Clinical implications: The death of a fetus over 20 weeks gestation provides a unique experience of grief. The findings support the need for additional resources needed beyond the hospital by nurses or other providers to facilitate healing and minimize complicated grief. Furthermore, the findings support the need for increasing awareness among healthcare providers and peers about how to communicate and care for dyads experiencing fetal death. [ABSTRACT FROM AUTHOR]

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Among hospital responses to the COVID19 pandemic worldwide, service reorganization and staff reassignment have been some of the most prominent ways of adapting hospital work to the expected influx of patients. In this article, we examine work reorganization induced by the pandemic by identifying the operational strategies implemented by two hospitals and their staff to contend with the crisis and then analyzing the implications of those strategies. We base our description and analysis on two hospital case studies in Quebec. We used a multiple case study approach, wherein each hospital is considered a unique case. In both cases, work adaptation through staff reassignment was one of the critical measures undertaken to ensure absorption of the influx of patients into the hospitals. Our results showed that this general strategy was designed and applied differently in the two cases. More specifically, the reassignment strategies revealed numerous healthcare resource disparities not only between health territories, but also between different types of facilities within those territories. Comparing the two hospitals' adaptation strategies showed that past reforms in Quebec determined what these reorganizations could achieve, as well as how they would affect workers and the meaning they gave to their work. [ABSTRACT FROM AUTHOR]

Background: The palliative approach to care is playing a larger role in the healthcare of older adults in Canada. Within (hospice) palliative care, informal caregivers play a crucial role as part of the interdisciplinary care team. Ensuring high quality palliative care includes providing effective grief and bereavement supports for them. Objective: This study aimed to identify current interventions addressing the grief and bereavement experiences of informal caregivers of geriatric patients in the Canadian (hospice) palliative/end-of-life care realm. Methods: A scoping review was undertaken using Arksey and O'Malley's framework. Seven electronic health and social science databases were searched. In addition, several stakeholder organizations' websites were reviewed to identify grey literature sources. Interventions that took place in Canada, were in English, and explored grief and bereavement supports for informal caregivers in an adult/geriatric (hospice) palliative care setting were included. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. Results: Within a total of 18 sources, three themes were identified: (1) Classification of intervention, (2) Format of intervention, and (3) Intervention target. Method of delivery and type of intervention for grief and bereavement supports were aligned with the international literature. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. Practitioners should be encouraged to direct bereavement interventions toward grieving caregivers, and to collaborate with them to improve access to these interventions. Policy makers should provide additional funding for grief interventions for informal caregivers. Conclusions: It is important to better understand the needs of informal caregivers experiencing grief and bereavement. Interdisciplinary collaborations will be necessary to develop, evaluate, and scale future interventions. [ABSTRACT FROM AUTHOR]

Background: In Canada, nearly nine pregnancies end in stillbirth daily. Most of these families will go on to have subsequent pregnancies, but research into how best to care for these parents is lacking. This study explores the lived experiences and the most important aspects of person-centred care for Canadian families experiencing a pregnancy after a stillbirth. Methods: This qualitative descriptive design used secondary data collected from an online, international survey for bereaved parents who reported having experienced a pregnancy subsequent to a stillbirth. Only parents who identified as Canadian were included in this study. Three open text questions were asked about parents' experiences in their subsequent pregnancy. An inductive thematic analysis approach was used with open coding and a constant comparative method. Results: Families' responses fell into six main themes that identified what they would have preferred for high quality, excellent care. These included: (1) recognizing anxiety throughout the subsequent pregnancy, (2) wanting one's voices and concerns to be heard and taken seriously, (3) needing additional and specific clinical care for reassurance, (4) desiring kindness and empathy from caregivers and others, (5) seeking support from others who had also experienced pregnancy after stillbirth; and (6) addressing mixed emotions including guilt, continuity of care and carer, positive thoughts versus more realistic ones, and poignant feelings of self-blame. Conclusions: Participants' responses identified that pregnancy after stillbirth is an extremely stressful time requiring patient-oriented care and support, both physically and psychologically. Families were able to articulate specific areas that would have improved the experience of their subsequent pregnancy. Parents asked for high-quality clinical and psychosocial prenatal care that was specific to them having experienced a prior stillbirth. They also requested connections to others experiencing this similar scenario. Further research is needed to delineate what supports and resources would be needed to ensure this care would be available to all families experiencing pregnancy after stillbirth across Canada and their caregivers. [ABSTRACT FROM AUTHOR]

Summary: This qualitative study examined the COVID-19 pandemic as experienced by healthcare-based social workers in relation to practice, and personal and professional impacts of providing care in this context, with recommendations for pandemic preparedness and response. A total of 12 focus groups were convened between June 2020 and March 2021, comprising 67 hospital social workers across multiple hospitals and other care facilities in western Canada. Findings: Based on an Interpretive Description approach, themes emerged reflecting practice shifts; increased work and changing roles; imposed restrictions; problems in communication and decision-making; distress, fear, and demoralization; and co-existing silver linings amid challenges. Applications: The COVID-19 pandemic has substantially impacted social workers and their delivery of service. Addressing concerns through proactive responsiveness, both during and beyond the pandemic, are important in nurturing patient-centered care and a supported workforce. Along with that of interdisciplinary colleagues in health care, social workers' practice has been profoundly impacted by the COVID-19 pandemic. This article explores the experiences of social workers in healthcare settings during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease's early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers' conceptualizations of resilience, examine MS caregivers' experiences of resilience development, and determine which assets and resources influence resilience in this role. Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis. Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges. Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies. [ABSTRACT FROM AUTHOR]

Medical assistance in dying (MAiD) legislation was passed in Canada in 2016, yet the bereavement experience of family and friends is not well understood. Using interpretive description, we interviewed nine bereaved individuals. The time before the assisted death seems most impactful—an experience of bringing death to life shapes bereavement after death. We identified themes that inform this grieving: (1) certainty of date/time of death—intensifies a parade of lasts, initiates a countdown and affords time to say good-bye; (2) active family engagement as planners supports sense-making; and (3) enacting MAiD as ceremony slows time to "digest" loss. [ABSTRACT FROM AUTHOR]

Background: Palliative care educators should incorporate strategies that enhance application into practice by learners. Commitment-to-change is an approach to reinforce learning and encourage application into practice; immediately post-course learners commit to making changes in their practices as a result of participating in the course ("statements") and then several weeks or months later are prompted to reflect on their commitments ("reflections"). Aim: Explore if and how learners implemented into practice what they learned in a palliative care course, using commitment-to-change reflections. Design: Secondary analysis of post-course commitment statements and 4-months post-course commitment reflections submitted online by learners who participated in Pallium Canada's interprofessional, 2-day, Learning Essential Approaches to Palliative Care (LEAP) Core courses. Setting/participants: Primary care providers from across Canada and different profession who attended LEAP Core courses from 1 April 2015 to 31 March 2017. Results: About 1063 of 4636 learners (22.9%) who participated in the 244 courses delivered during the study period submitted a total of 4250 reflections 4 months post-course. Of these commitments, 3081 (72.5%) were implemented. The most common implemented commitments related to initiating palliative care early across diseases, pain and symptom management, use of clinical instruments, advance care planning, and interprofessional collaboration. Impact extended to patients, services, and colleagues. Barriers to implementation into practice included lack of time, and system-level factors such as lack of support by managers and untrained colleagues. Conclusions: Examples of benefits to patients, families, services, colleagues, and themselves were described as a result of participating in the courses. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has profoundly affected the world. In Canada, the impact has been worrisome. Canada is a large, sparsely populated country with a system of universal health care that is decided nationally and enacted by each province and territory. There are variations in health care, as well as in the provision of social work, throughout the country. The aim of this survey is to examine the impact of the COVID-19 pandemic on social workers employed in health care. Participants were recruited for an online survey via social media, professional associations, and social work education programs. Three hundred and seventy-six social workers participated. Analyses were performed to: (1) investigate the changes in workplace conditions indicated by social workers as a result of the COVID-19 pandemic; (2) examine reported levels of distress, social support, quality of professional life, resilience, and posttraumatic growth among respondents during this time; and (3) contextualize these findings by exploring similarities and differences across geographic locations. Many respondents were deemed essential workers. Significant differences across regions were not found. The knowledge generated has important implications for all sectors of the social work profession in Canada. [ABSTRACT FROM AUTHOR]

While cure rates in pediatric oncology have improved over the past 30 years, childhood cancer remains the second leading cause of death in children aged 1 to 14. Developing therapies often require using cancerous tissues, which may come from deceased donors. Tumor banks collect, store, and distribute these donated samples. While tumor banking is more common, factors that contribute to parents' decision and the impact of it on the family are not well understood. The purpose of this hermeneutic study was to understand the meaning and impact of tumor banking for parents of children who have died from cancer. Findings suggest that parents donating their child's tumors unexpectedly found a sense of meaning in their loss. They also found a legacy of their child's life; the living cells in some ways assisted the parents with grief. Aspects of this sensitive conversation and decision are discussed from the perspective of the parents' experiences. [ABSTRACT FROM AUTHOR]

Background: Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers (e.g., program managers) and to understand how their experiences within the health care system may have influenced their perceptions. Methods: Nine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes. Results: Three themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual's illness. Conclusions: Caregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands. [ABSTRACT FROM AUTHOR]

Background: There is an increasing demand for Hospice Palliative Care (HPC) due to the aging population, increased incidence of cancer, and other chronic diseases, as well as recent advances in care and treatment. Objectives: The present study was conducted to examine the nature and structure of HPC services and to describe and compare them in the United Kingdom (UK), Canada, Australia, Japan, India, Jordan, and Iran to extract general conclusions and suggestions for developing HPC systems in Iran. Methods: In the current descriptive-comparative study, from 2018 to 2019, HPC delivery systems in the selected countries and Iran were reviewed based on the World Health Organization (WHO) guideline, and the similarities and differences among them were explained. Results: Developing the National HPC Program and its integration into the health system are important activities. The most common source of financing is donation. The services are mainly provided to patients with cancer. Human resource development includes curriculum reform, creating specialty, subspecialty disciplines, and holding training courses. Other activities include designing national guidelines, the free access to opioids, research development, the establishment of the national information network, and the quality control programs. Iran lacks any formal structure and program of HPC services and they are provided in a scattered and very limited manner as part of general palliative services. Conclusions: HPC services are in a mediate and low level in developed countries and Iran, respectively. Before the establishment of the HPC delivery system, a complicated range of economic, social, cultural, and political factors must be considered. [ABSTRACT FROM AUTHOR]

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care. [ABSTRACT FROM AUTHOR]

Aims and objectives: To understand how parents experienced miscarriage in an emergency department setting. Objectives were to identify parents' needs, isolate factors that influenced their experience, and provide recommendations to improve care from the perspective of women, their partners, nurses and nurse managers. Background: Miscarriage is the most prevalent complication encountered during pregnancy. It subjects parents to a multitude of emotions and may have significant consequences on mental health. Emergency department visits are frequently the only opportunity for parents to receive formal support during a miscarriage; it is thus crucial to understand the experiences of parents in this setting. Design: The study employed a descriptive, exploratory, qualitative approach with semi‐structured interviews. Methods: The study was founded on the W.K. Kellogg Foundation's Logic Model Development Guide (2004) and Meleis' Transitions Theory (2015). A total of 26 participants were interviewed (17 parents, 7 emergency department nurses and 2 emergency department nurse managers). Consolidated criteria for reporting qualitative research was used to report results. Results: Three categories of needs were identified: physical health, cognitive and emotional. For instance, parents expressed a need to receive more information during their visit to the emergency department (i.e., a cognitive need), whether about the diagnostic test results or how to ensure a better recovery. Parents also reported a desire for professionals to address their emotional concerns. Nurses were aware of the emotional impact of miscarriage but felt that they were not adequately trained in providing optimal care to parents in this situation. Conclusions: Parents who visited the emergency department for miscarriage reported several unfulfilled needs that generated dissatisfaction with care. Emergency department organisational constraints hindered optimal nursing care practices. Relevance to clinical practice: Nurses have an important role to play in improving parents' experience. They can do so by understanding the needs of parents and by being involved in developing new guidelines. [ABSTRACT FROM AUTHOR]

COVID-19 has led to unprecedented health and social measures in several countries, including major restrictions on funeral rituals. These restrictions concerned pre-mortem, peri-mortem and post-mortem rites. Based on a longitudinal study of 955 French-speaking Canadians bereaved of a loved one during the pandemic, this article describes the reality of these impediments. Through an analysis of the quantitative and qualitative data collected, it is possible to identify the gap between desired and realized funeral rituals during the first year of the COVID-19 pandemic. The results show important hindrances to the various desired rituals, yet some ritual and symbolic creativity by the bereaved., (© 2022 Canadian Sociological Association/La Société canadienne de sociologie.)

Despite public health measures and collective efforts, millions of individuals have unfortunately died from COVID-19 complications worldwide, leaving several million family members at risk of developing bereavement complications. In the Canadian province of Quebec, where substantial deaths were associated with COVID-19, we established an online support community for bereaved caregivers who lost a loved one during the pandemic. We explain how we created a community that recognized pandemic grief and advocated for its wider acknowledgment. We discuss "compassionate communities," the theoretical underpinning of our initiative, as a means to foster solidarity, normalize finitude, create and maintain a safe social space through group sharing, and challenging capitalist principles. We then describe the eight areas of activities inspired by the Charter of Pallium Canada: education and training, hospices and nursing homes, media and social media, commemoration, celebrations, artistic practices and storytelling, marginalized populations, and review and evaluate. We propose that online communities constitute a powerful space for community members to gather and advocate for greater awareness of the inequities found in end-of-life care and bereavement services, to denounce abusive situations experienced by many individuals who died from COVID-19 complications, and to fight against the lack of recognition experienced by numerous caregivers., (© 2021 Society for Community Research and Action.)

Aim: The aim of this study is to describe the experiences of other countries regarding the status of pediatric palliative care in the field of symptom management and to compare it with the current status in Iran to achieve an appropriate level of symptom management for children with cancer. Materials and Methods: This is a comparative study. The research population includes the palliative care systems of Jordan, England, Australia, and Canada, which were ultimately compared with Iran's palliative care system. Results: The results showed that in the leading countries in the field of palliative care, such as Australia and Canada, much effort has been made to improve palliative care and to expand its service coverage. In the UK, as a pioneer in the introduction of palliative care, a significant portion of clinical performance, education and research, is dedicated to childhood palliative care. Experts in this field and policymakers are also well aware of this fact. In developing countries, including Jordan, palliative care is considered a nascent specialty, facing many challenges. In Iran, there is still no plan for providing these services coherently even for adults. Conclusion: Children with cancer experience irritating symptoms during their lives and while they are hospitalized. Regarding the fact that symptom management in developed countries is carried out based on specific and documented guidelines, using the experiences of these successful countries and applying them as an operational model can be useful for developing countries such as Iran. [ABSTRACT FROM AUTHOR]

BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect upon the ways labour policies and practices respond to parental bereavement.METHODS: Critical discourse analysis was used to examine labour policies and practices related to employment leave for bereaved parents in Canada. Results were compared to international labour standards.RESULTS: Universally, employment policies provide only for the practical issues of bereavement. Commonly, leave is three days, unpaid, and meant to enable ceremonial obligations. Policies do not acknowledge the long-term suffering caused by grief or the variable intensity of different kinds of loss. Managerial, moral, normative and neoliberal values embedded in these policies efface the intensely personal experience of grief, thereby leaving employees at risk for serious health and workplace safety issues.CONCLUSIONS: Bereavement leave currently understands grief as a generic, time-limited state with instrumental tasks and ceremonial obligations. In contrast, research characterizes responses to child loss as intense, highly personal experiences for which healing and recovery can take years. This disconnect is especially problematic when viewed through the lens of employee wellbeing, reintegration and workplace productivity. [ABSTRACT FROM AUTHOR]

Background The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. Methods The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. Results Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. Conclusions There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children's end-of-life care. [ABSTRACT FROM AUTHOR]

ABSTRACT The purpose of the study was to describe ways that successful culture-based Aboriginal preventive family service agencies offer employment and education opportunities for staff. Staff in three inner-city, culture-based Aboriginal family agencies were asked about their employment and educational opportunities. Forty-four individuals were asked the question: 'what employment and education opportunities have you had while in this job?' A total of 81 unique responses were received. Participants grouped the responses into eight themes including: planning for services, promotion within the agency, specific skill development, enhanced self-confidence, cultural awareness, teaching others, workshops as well as certified training. Differences between the experiences of study participants and the existing literature indicate that practices within culture-based Aboriginal family agencies are distinct in relation to funding, staff mobility, strengths-base, practical training and cultural knowledge, and that these should be understood and recognized formally in funding decisions and in future research. [ABSTRACT FROM AUTHOR]

Objective: Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families. Method: Twenty-one qualitative and survey-based studies published between 2000 and 2010 that met the selection criteria were retrieved from MEDLINE, PsycINFO, and CINAHL. All studies reported on the needs of patients and families receiving pediatric palliative and end-of-life care-from either the patient's, parent's, sibling's, or health care provider's perspective. Findings from these studies were aggregated using a metasummary technique. Results: Findings were extracted and grouped into the following 10 thematic domains pertaining to patient and family needs: interactions with staff, health care delivery and accessibility, information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, sibling's needs, and decision making. Conclusions: The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines. [ABSTRACT FROM AUTHOR]

'Virtual memorials' intended to memorialize the lives of children imply significant shifts in the conceptualization of death, particularly for grieving parents. Created by parents in memory of their deceased children, on-line memorials constructed using templates reflect strong cultural beliefs about the nature of childhood deaths, grief and the development of a kind of digital afterlife. Virtual memorials create a new social value for the deceased, and shift death and bereavement from private into more public experiences. Building upon this work, we describe a kind of 'on-line immortality' created through virtual memorials where the virtual presence of the deceased in text and images, and practices intended to sustain a relationship with the deceased, can extend bereavement and the social lives of the dead indefinitely. While such memorials can offer solace, they also potentiate business opportunities for those hoping to create lasting customers. As such, they may also extend mourning indefinitely. This may be especially true for certain kinds of deeply problematic deaths, such as those of children. [ABSTRACT FROM AUTHOR]

The article presents medical news briefs. A U.S. Food and Drug Administration panel voted on July 23, 2010 against the opioid Risk Evaluation and Mitigation Strategies. The hospice Education Network announced in June of 2010 they were adding nine End-of-Life Nursing Education Geriatric Palliative Care modules to their course catalog. A randomized controlled trial reported glucosamine had little effect on patients with degenerative lumbar osteoarthritis and chronic low back pain.

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two. [ABSTRACT FROM AUTHOR]

An International Family Nursing Conference has been held on a periodic basis since the 1980s. It started with several nursing professionals with a common interest: wanting to meet to share research and practice ideas. The organization of these conferences has been completely voluntary and sponsored by some very benevolent individuals and an institution of higher education. The fact that any of these conferences came off is attributed to considerable personal financial support and an untold number of volunteer hours. A group met in 2005 at the 7th International Family Nursing Conference in Victoria, British Columbia, Canada, to discuss whether there was any interest in forming a professional organization for family nursing. This article explores the cost/ benefits of such an endeavor. Input from other small newly created professional nursing organizations is shared. Conclusions provide summative questions related to development of a formal international professional nursing organization that family nurses must address. [ABSTRACT FROM AUTHOR]

Medical assistance in dying (MAiD) and palliative sedation (PS) are both legal options in Canada that may be considered by patients experiencing intolerable and unmanageable suffering. A contentious, lively debate has been ongoing in the literature regarding the similarities and differences between MAiD and PS. The aim of this paper is to explore the propositions that MAiD and PS are essentially similar and conversely that MAiD and PS are distinctly different. The relevance of such a debate is apparent for clinicians and patients alike. Understanding the complex and multi‐faceted nuances between PS and MAiD allows patients and caregivers to make more informed decisions pertaining to end‐of‐life care. It is hoped that this paper will also serve to foster further debate and consideration of the issues associated with PS and MAiD with a view to improve patient care and the quality of both living and dying in Canada. [ABSTRACT FROM AUTHOR]

An abstract of the article "Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative educational initiative" by Kimberly Widger and colleagues is presented.

Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without necessarily understanding the perceptions, knowledge and beliefs that could influence the design of the intervention and implementation., Aim: The aim of this review was to understand the perceptions, knowledge and beliefs about stillbirth prevention and bereavement of First Nations Peoples from the US, Canada, Aotearoa/New Zealand, and Australia., Methods: This review was conducted in accordance with the JBI methodology for a convergent integrated mixed method systematic review. This review was overseen by an advisory board of Aboriginal Elders, researchers, and clinicians. A search of eight databases (PubMed, MEDLINE, PsycInfo, CINAHL, Embase, Emcare, Dissertations and Theses and Indigenous Health InfoNet) and grey literature was conducted. All studies were screened, extracted, and appraised for quality by two reviewers and results were categorised, and narratively summarised., Results: Ten studies were included within this review. Their findings were summarised into four categories: safeguarding baby, traditional practices of birthing and grieving, bereavement photography and post-mortem examination. The results indicate a diversity of perceptions, knowledge and beliefs primarily around smoking cessation and bereavement practices after stillbirth. However, there was a paucity of research available., Conclusions: Further research is needed to understand the perceptions, knowledge and beliefs about stillbirth among First Nations Peoples. Without research within this area, interventions to prevent stillbirth and support bereaved parents and their communities after stillbirth may face barriers to implementation., Competing Interests: Conflict of interest None declared., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: The objective of this review is to investigate First Nations populations' perceptions, knowledge, attitudes, beliefs, and myths about stillbirth., Introduction: First Nations populations experience disproportionate rates of stillbirth compared with non-First Nations populations. There has been a surge of interventions aimed at reducing stillbirth and providing better bereavement care, but these are not necessarily appropriate for First Nations populations. As a first step toward developing appropriate interventions for these populations, this review will examine current perceptions, knowledge, attitudes, beliefs, and myths about stillbirth held by First Nations people from the United States, Canada, Aotearoa/New Zealand, and Australia., Inclusion Criteria: The review will consider studies that include individuals of any age (bereaved or non-bereaved) who identify as belonging to First Nations populations. Eligible studies will include the perceptions, knowledge, attitudes, beliefs, and myths about stillbirth among First Nations populations., Methods: This review will follow the JBI methodology for convergent mixed methods systematic reviews. The review is supported by an advisory panel of Aboriginal elders, lived-experience stillbirth researchers, Aboriginal researchers, and clinicians. PubMed, MEDLINE (Ovid), CINAHL (EBSCOhost), Embase (Ovid), Emcare (Ovid), PsycINFO (EBSCOhost), Indigenous Health InfoNet, Trove, Informit, and ProQuest Dissertations and Theses will be searched for relevant information. Titles and abstracts of potential studies will be screened and examined for eligibility. After critical appraisal, quantitative and qualitative data will be extracted from included studies, with the former "qualitized" and the data undergoing a convergent integrated approach., Review Registration: PROSPERO CRD42023379627., Competing Interests: DP, ZM, SH, CV, and CS are paid employees of JBI, The University of Adelaide. CS is deputy editor in chief of JBI Evidence Synthesis , but was not involved in the editorial processing of this manuscript. The other authors declare no conflicts of interest., (Copyright © 2023 JBI.)

The specialty of oncology nursing has been evolving in North America for nearly a century, keeping pace with the rapid and dynamic developments in cancer care. This narrative review outlines the history and development of oncology nursing in North America with a focus on the United States and Canada. The review highlights the important contributions that specialized oncology nurses have made to the care of people affected by cancer from time of diagnosis through treatment, follow-up and survivorship care, as well as palliative, end-of-life, and bereavement care. Keeping pace with the rapid evolution of cancer treatments throughout the last century, nursing roles have similarly evolved to meet the need for more specialized training and education. This paper discusses the growth of nursing roles, including advanced practice and navigator roles. In addition, the paper outlines the development of professional oncology nursing organizations and societies that have been established to help guide the profession with best practices, standards, and competencies. Finally, the paper discusses new challenges and opportunities regarding the access, availability, and delivery of cancer care that will shape future development of the specialty. Oncology nurses will continue to be integral to the provision of high-quality, comprehensive cancer care as clinicians, educators, researchers, and leaders.

Background: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a 'Train-the-Trainer' model., Methods/design: In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams., Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.

This paper explores the policies and practices that are needed to improve the safety of home care in light of the most recent evidence about home care safety in Canada. Four areas for policy and practice change are addressed: 1) the promotion of effective communication processes in home care through cross-sector collaboration, case management and technology innovations; 2) screening for safety risk factors; 3) standardizing care processes, packaging and equipment; and 4) supporting family/caregivers and strengthening clients' ability to engage in therapeutic self-care. Evidence-based strategies for change are presented within the context of the evidence about home care safety issues., (Copyright © 2014 Longwoods Publishing.)