The Traces of Cancer: A Metaphorical Understanding of the Experiences of Women Living Beyond Breast Cancer.

This study feeds into ongoing discussions on the metaphors used by cancer patients. Its aim is to explore how women living with a history of breast cancer use metaphors to express and interpret the experience of cancer remission. Data were collected in interviews designed to capture a rich and metaphorical description of participants' experiences with breast cancer and what these experiences mean to them. Ten participants were recruited. An interpretative phenomenological analysis of the participants' narratives highlighted a central metaphor: the cancer trace in one's life. The participants had to adapt to four specific traces of cancer: (1) the identity trace, (2) the existential trace, (3) the bodily trace, and (4) the narrative trace. We discuss how cancer challenges one's sense of biographical continuity and initiates a search for a new way of being. We also discuss how the metaphor of the trace differs from the metaphor of the cancer hero living without any trace of cancer.

Intentional presence and the accompaniment of dying patients.

In this paper, we offer a phenomenological and hermeneutical perspective on the presence of clinicians who care for the suffering and dying patients in the context of end-of-life care. Clinician presence is described as a way of (1) being present to the patient and to oneself, (2) being in the present moment, and (3) receiving and giving a presence (in the sense of a gift). We discuss how presence is a way of restoring human beings' relational and dialogical nature. To inform a different perspective on relational ethics, we also discuss how accompaniment refers to the clinician's awareness of the human condition and its existential limits.

Acknowledging bereavement, strengthening communities: Introducing an online compassionate community initiative for the recognition of pandemic grief.

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.

Development of the Pediatric Integrated Nutrition Pathway for Acute Care (P-INPAC) using a modified Delphi technique.

One in three hospitalized children have disease-related malnutrition (DRM) upon admission to hospital, and all children are at risk for further nutritional deterioration during hospital stay; however, systematic approaches to detect DRM in Canada are lacking. To standardise and improve hospital care, the multidisciplinary pediatric working group of the Canadian Malnutrition Taskforce aimed to develop a pediatric, inpatient nutritional care pathway based on available evidence, feasibility of resources, and expert consensus. The working group (n = 13) undertook a total of four meetings: an in-person meeting to draft the pathway based on existing literature and modelled after the Integrated Nutrition Pathway for Acute Care (INPAC) in adults, followed by three online surveys and three rounds of online Delphi consensus meetings to achieve agreement on the draft pathway. In the first Delphi survey, 32 questions were asked, whereas in the second and third rounds 27 and 8 questions were asked, respectively. Consensus was defined as any question/issue in which at least 80% agreed. The modified Delphi process allowed the development of an evidence-informed, consensus-based pathway for inpatients, the Pediatric Integrated Nutrition Pathway for Acute Care (P-INPAC). It includes screening <24 h of admission, assessment with use of Subjective Global Nutritional Assessment (SGNA) <48 h of admission, as well as prevention, and treatment of DRM divided into standard, advanced, and specialized nutrition care plans. Research is necessary to explore feasibility of implementation and evaluate the effectiveness by integrating P-INPAC into clinical practice.

"I couldn't": A phenomenological exploration of ethical tensions experienced by bereaved family members during the pandemic.

INTRODUCTION: The COVID-19 pandemic entailed significant changes in accompaniment, end-of-life, and bereavement experiences. In some countries, public health measures prevented or restricted family caregivers from visiting their dying loved ones in residences, long-term care institutions, and hospitals. As a result, family members were faced with critical decisions that could easily lead to ethical dilemmas and moral distress. AIM: This study aimed to understand better the experience of ethical dilemmas among family caregivers who lost a loved one. METHDS: We interviewed twenty bereaved family caregivers and analysed their narratives using Interpretative phenomenological analysis. RESULTS: Our analysis suggests that family caregivers struggled with their multiple responsibilities (collective, relational, and personal) and had to deal with the emotional cost of their choices. Results display three emerging themes describing the experience of ethical struggles: (1) Flight or fight: Struggling with collective responsibility; (2) Being torn apart: Assuming relational responsibility and (3) "Choosing" oneself: The cost of personal responsibility. DISCUSSION/CONCLUSION: Results are discussed and interpreted using an ethical, humanistic, and existential conceptual framework.

A Phenomenological and Clinical Description of Pandemic Grief: How to Adapt Bereavement Services?

Background: Some studies suggest that individuals having lost a loved one during the COVID-19 pandemic report higher levels of grief reactions than people bereaved from natural causes. Little is known about the lived and subjective experience of individuals who lost a loved one under confinement measures. Aim: This research aims to provide a phenomenological description of pandemic grief (PG) that can be useful in clinical settings and bereavement services. Methods: Seventy-six qualitative phenomenological interviews have been conducted with 37 individuals who have lost a loved one during the first wave of the pandemic. Interpretative phenomenological analysis was performed following Tracy's criteria for rigorous qualitative research. Results: The experience of PG comprises clinical manifestations and can be described as "a type of grief occurring in the context of a pandemic, where applicable public health measures have precedence over end of life and caregiving practices as well as funeral rituals, overshadowing the needs, values, and wishes of the dying individuals and those who grieve them." Discussion/Conclusion: This study is the first to provide a phenomenological and experiential understanding of PG. Our phenomenological description can be helpful in clinical settings such as bereavement services within palliative care teams.

The incurable metastatic breast cancer experience through metaphors: the fight and the unveiling.

Purpose: War metaphors are omnipresent in public and medical discourse on cancer . If some studies suggest that cancer patients may view their experiences as afight, few studies focus on the metaphors that patients create from their subjective experiences. The aim was to better understand the experience of four women with incurabale metastatic breast cancer from the metaphors they used in personal cancer blogs.Methods: An interpretive phenomenological analysis (IPA) was used to analyze these women's experience and metaphors of cancer.Results: Two metaphors carried the meaning of metastatic breast cancer experience: the fight and the unveiling. The results show that the war metaphor had a unique meaning for the bloggers who lived with incurable breast cancer: they revealed the difficulty of fighting cancer and eventually collapsing in battle, although a renewed look at life had developed in parallel to their struggle. The bloggers thus tried to lift the veil on this complex experience.Conclusion: The results highlight the need for women with metastatic breast cancer to be able to tell and share their experience in a supportive context and to reinvest the war metaphor in order to express themselves in a more authentic way.

Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic.

PURPOSE: The COVID-19 pandemic has disrupted thousands of individuals' experience of caregiving and grief. This qualitative study aimed to gain in-dept understanding of family caregivers' lived experiences of caregiving and bereavement in the context of the COVID-19 pandemic in Quebec, Canada. The study also aimed at providing new insight about caregiving and bereavement by analysing the metaphors family caregivers use to report their experiences. METHODS: The design of this study was guided by an interpretative phenomenological approach. In-depth interviews were conducted with twenty bereaved family caregivers who had lost a loved one during the first waves of the pandemic. RESULTS: Results indicate that bereaved family caregivers lived and understood their experience in terms of metaphoric cut-offs, obstructions and shockwaves. These three metaphors represented the grief process and the bereaved's quest for social connection, narrative coherence and recognition. CONCLUSION: By identifying the meaning of the bereaved's metaphors and the quest they reveal, our study underlines the singularity of pandemic grief and points to the value and meaning of caregiving with regard to the grieving process.

Canadian Nationwide Survey on Pediatric Malnutrition Management in Tertiary Hospitals.

Background: Disease-associated malnutrition (DAM) is common in hospitalized children. This survey aimed to assess current in-hospital practices for clinical care of pediatric DAM in Canada. Methods: An electronic survey was sent to all 15 tertiary pediatric hospitals in Canada and addressed all pillars of malnutrition care: screening, assessment, treatment, monitoring and follow-up. Results: Responses of 120 health care professionals were used from all 15 hospitals; 57.5% were medical doctors (MDs), 26.7% registered dietitians (RDs) and 15.8% nurses (RNs). An overarching protocol for prevention, detection and intervention of pediatric malnutrition was present or "a work in progress", according to 9.6% of respondents. Routine nutritional screening on admission was sometimes or always performed, according to 58.8%, although the modality differed among hospitals and profession. For children with poor nutritional status, lack of nutritional follow-up after discharge was reported by 48.5%. Conclusions: The presence of a standardized protocol for the clinical assessment and management of DAM is uncommon in pediatric tertiary care hospitals in Canada. Routine nutritional screening upon admission has not been widely adopted. Moreover, ongoing nutritional care of malnourished children after discharge seems cumbersome. These findings call for the adoption and implementation of a uniform clinical care pathway for malnutrition among pediatric hospitals.

"It Made Me More Human": Existential Journeys of Family Caregivers from Prognosis Notification Until after the Death of a Loved One.

Background: An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond. Objective: This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death. Setting/Participants: A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews. Data Collection: Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews. Results: The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey. Conclusions: PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.

From powerlessness to recognition the meaning of palliative care clinicians' experience of suffering.

Palliative care (PC) clinicians work alongside people who are at the end of their lives. These patients face death and suffering, which may also cause significant suffering for the PC clinicians themselves. Previous studies suggest that a significant number of PC professionals suffer from compassion fatigue, vicarious trauma and burnout. However, very few studies have attempted to better understand the meaning of PC clinicians' lived experience of suffering in its complexity and intricacy. Drawing upon Interpretative Phenomenological Analysis (IPA), this study aimed to explore the PC clinicians' experience of suffering from a phenomenological and existential perspective. In-depth interviews were conducted with twenty-one specialized PC clinicians who were all part of the same multidisciplinary team. Interviews were analysed using IPA. The three emerging essential themes describing the meaning of clinicians' suffering were 1) Suffering as powerlessness; 2) suffering as non-recognition and 3) easing suffering: the promise of recognition. Result interpretation was based on Paul Ricoeur's existential phenomenology of suffering and recognition. The conclusion calls for support initiatives and interventions aimed at promoting recognition among PC clinicians on personal, professional, and institutional levels.

Quebec proposition of Medical Aid in Dying: a palliative care perspective.

The government of Quebec (Canada) is poised to adopt a proposition to legalize euthanasia in the form of "Medical Aid in Dying," which presents a new option for end-of-life care. This proposition arouses concerns among palliative care providers. The aim of this article is to provide a palliative care perspective on Quebec's proposition to legalize euthanasia. Based on the epistemological and methodological framework of critical theory, the following three questions are raised: First, in Quebec's current state of the law, is it possible to relieve the suffering of end-of-life patients? Second, can the Quebec proposition to legalize euthanasia in specific circumstances be harmful? Third, is the Quebec proposition on euthanasia compatible with palliative care and social values? In conclusion, recommendations and alternatives to the current Quebec proposition are suggested.

A conceptual analysis of spirituality at the end of life.

The definition of spirituality is the subject of endless debates in the empirical literature. This content analysis sought to: (1) exhaustively review the empirical literature on end-of-life spirituality to extract definitional elements of this concept and (2) elaborate on these definitional elements to create an integrative and inclusive definition of end-of-life spirituality based on the items retrieved. A search of the literature on spirituality published in the last 10 years was conducted via the the PsychINFO and MEDLINE databases. Seventy-one articles were selected based on specific inclusion criteria. A qualitative thematic analysis yielded 11 dimensions for the concept of end-of-life spirituality, namely: (1) meaning and purpose in life, (2) self-transcendence, (3) transcendence with a higher being, (4) feelings of communion and mutuality, (5) beliefs and faith, (6) hope, (7) attitude toward death, (8) appreciation of life, (9) reflection upon fundamental values, (10) the developmental nature of spirituality, and (11) its conscious aspect. The definition derived from this concept analysis, after being tested empirically, may be useful in informing the development of new measures of spirituality and new protocols to assess spirituality in clinical settings.

Impact of stress, distress and feelings of indebtedness on adherence to immunosuppressants following kidney transplantation.

In order to ensure transplantation's long-term success, transplant recipients need to comply with a strict regimen of immunosuppressant medication on a daily basis for the rest of their lives. Nonadherence is one of the major causes of organ rejection. Because compliance is voluntary, it is likely to be influenced by an individual's beliefs and feelings. This study examined the impact on compliance of the following factors: (1) transplant-related stress; (2) general perceived stress; (3) psychosocial distress and (4) feelings of indebtedness and guilt towards the donor. Fifty kidney recipients (34 men, 16 women) filled out self-report questionnaires. The results indicate that 46% acknowledged sub-optimal compliance in the last month; patients more often reported not taking the medication exactly as prescribed than forgetting to take it. The results also suggest that psychological distress and general perceived stress affect compliance negatively, whereas feelings of indebtedness improve it. These results have implications for the understanding and management of compliance following organ transplantation.