Getting Insight to the Lived Emotional Experience of People with Alzheimer's Disease Shortly After Diagnosis: A Phenomenological Approach.

Background: A diagnosis of Alzheimer's disease (AD) is a crucial moment in an individual's existence and represents a major life change that often results in psychological distress, diminish of perceived quality of life, and loss of independence. It is important to better understand the emotional experience of people with dementia to intervene according to their specific needs. Objective: The aim of the research was to get insight to the emotional experience of people with AD shortly after its discovery and the consequences thereof. Methods: A qualitative exploratory design was engaged, and in-depth interviews were conducted with ten French-speaking participants over 70 years recently diagnosed. Interviews were guided by Heideggerian phenomenology about movements in the worldview of individuals. The transcribed data was subjected to interpretative phenomenological analysis. Results: Following the diagnosis, participants experienced either shock or denial. Emotions felt were unpleasant and disturbing for most of them. Especially when participants were confronted with news concerning the illness, they experienced incomprehension. They engaged in an oscillatory motion of connection and disconnection to establish new meanings of their worldview. Thinking about the past seemed to diminish their worries, to reinforce the possibility to fulfil a significant place in their existence and to maintain their autonomy. Conclusions: When participants could express their emotional experience and their concerns, they regained a sense of control in their life that seemed du reduce their distress. With this insight, intervention could be adapted to the specific needs of people with AD to enhance their self-determination and quality of life.

'Intensive palliative care': a qualitative study of issues related to nurses' care of people with amyotrophic lateral sclerosis at end-of-life.

Background: Amyotrophic lateral sclerosis (ALS) is currently an incurable and fatal disease, which often comes with a high symptom burden at the end-of-life stage. Little is known about nurses' experiences in this context. Objective: To explore the experience of nurses caring for people with ALS at end-of-life. Design: A qualitative multiple-case study design. Method: Individual semi-structured interviews were conducted between February and August 2022 with nurses from Quebec, Canada, who had provided care to at least one person living with ALS at the end-of-life in the past 12 months. The content analysis method was used for data analysis and within-case and cross-case analyses were conducted, as well as comparative analyses according to the type of position held by the participants that determined the cases: (1) home care, (2) hospital and (3) palliative care home. Results: Participating in the study were 24 nurses: 9 were from home care, 8 from hospitals and 7 from palliative care homes. Five main themes were identified: (1) identifying the end-of-life period, (2) communication issues, (3) supporting the need for control, (4) accompanying in the fight culture and (5) the extent of the need for care. A sixth theme was also added in order to report the need expressed by nurses to improve their care of patients living with ALS at end-of-life. Conclusions: Although nurses' experiences varied among the different settings, the study identifies the pressing need for better education and, above all, more resources when caring for a person living with ALS at end-of-life. Future research should explore the experiences of other members of the healthcare team and test interventions designed to improve the quality of life and end-of-life of people living with ALS.

"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.

Passing through end-of-life suffering: Possible or not? Results from a qualitative inquiry.

The objective of this study was to understand the factors associated with "passing through suffering" in terminal illness. We interviewed 19 adults diagnosed with terminal disease in palliative stage. Interviews were analyzed using thematic analysis. Four axes of understanding were generated. In the first, participants discussed the will to "feel alive" despite the disease. The second, the process of acceptance, is based on lucidity and on letting go. The third highlights the importance of relationships with others. The fourth axis describes the consequences of this passage through suffering. This study highlights a phenomenon of adapting to suffering.

To Lose a Loved One by Medical Assistance in Dying or by Natural Death with Palliative Care: A Mixed Methods Comparison of Grief Experiences.

The integration of assisted dying into end-of-life care is raising reflections on bereavement. Patients and families may be faced with a choice between this option and natural death assisted by palliative care; a choice that may affect grief. Therefore, this study describes and compares grief experiences of individuals who have lost a loved one by medical assistance in dying or natural death with palliative care. A mixed design was used. Sixty bereaved individuals completed two grief questionnaires. The qualitative component consisted of 16 individual semi-structured interviews. We found no statistically significant differences between medically assisted and natural deaths, and scores did not suggest grief complications. Qualitative results are nuanced: positive and negative imprints may influence grief in both contexts. Hastened and natural deaths are death circumstances that seem to generally help ease mourning. However, they can still, in interaction with other risk factors, produce difficult experiences for some family caregivers.

Non-somatic Suffering in Palliative Care: A Qualitative Study on Patients' Perspectives.

Objectives: Suffering is intimately linked to the experience of illness, and its relief is a mandate of medicine. Advances in knowledge around terminal illness have enabled better management of the somatic dimension. Nevertheless, there is what can be called "non-somatic" suffering which in some cases may take precedence. Inspired by Paul Ricoeur's thinking on human suffering, our aim in this qualitative study was to better understand the experience of non-somatic suffering. Methods: Semi-structured interviews were conducted with 19 patients. The results were qualitatively analyzed following a continuous comparative analysis approach inspired by grounded theory. Results: Three key themes synthesize the phenomenon: "the being enduring the suffering", "the being whose agency is constrained", and "the being in relationship with others." The first describes what patients endure, the shock and fears associated with their own finitude, and the limits of what can be tolerated. The second refers to the experience of being restricted and of mourning the loss of their capacity to act. The last describes a residual suffering related to their interactions with others, that of loneliness and of abandoning their loved ones, two dimensions that persist even when they have accepted their own death. Conclusions: Non-somatic suffering can be multifarious, even when minimized by the patient. When evaluating suffering, we must keep in mind that patients can reach a "breaking point" that signals the state of unbearable suffering. In managing it, we probably need to make more room for family and friends, as well as a posture of caring based more on presence and listening.

The relational landscape of bereavement after anticipated death: An interpretive model.

To complement existing literature and better capture the diversity of factors influencing grief, a more interpersonal understanding is required. Thus, we used the relational landscape's concept and empirical investigation to clarify the roles of individuals surrounding the bereaved. Sixteen interviews with bereaved individuals by euthanasia or natural death were analyzed using Interpretive Description. We present a model describing five types of actors in the environment of the bereaved and their ways of "being with" or giving space. We also include four lived landscapes in our model, with the purpose of describing how bereavement can be experienced within the social environment.

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.

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.

A systematic review of older adults' request for or attitude toward euthanasia or assisted-suicide.

OBJECTIVES: Prevalence rates of death by euthanasia (EUT) and physician-assisted suicide (PAS) have increased among older adults, and public debates on these practices are still taking place. In this context, it seemed important to conduct a systematic review of the predictors (demographic, physical health, psychological, social, quality of life, religious, or existential) associated with attitudes toward, wishes and requests for, as well as death by EUT/PAS among individuals aged 60 years and over. METHOD: The search for quantitative studies in PsycINFO and MEDLINE databases was conducted three times from February 2016 until April 2018. Articles of probable relevance (n = 327) were assessed for eligibility. Studies that only presented descriptive data (n = 306) were excluded. RESULTS: This review identified 21 studies with predictive analyses, but in only 4 did older adults face actual end-of-life decisions. Most studies (17) investigated attitudes toward EUT/PAS (9 through hypothetical scenarios). Younger age, lower religiosity, higher education, and higher socio-economic status were the most consistent predictors of endorsement of EUT/PAS. Findings were heterogeneous with regard to physical health, psychological, and social factors. Findings were difficult to compare across studies because of the variety of sample characteristics and outcomes measures. CONCLUSION: Future studies should adopt common and explicit definitions of EUT/PAS, as well as research designs (e.g. mixed longitudinal) that allow for better consideration of personal, social, and cultural factors, and their interplay, on EUT/PAS decisions.

How Not to Let Secrets Out When Conducting Qualitative Research With Dyads.

Confidentiality is one of the cornerstones of research involving human participants. Researchers are the frontline gatekeepers of their participants' right to confidentiality, and situations can arise that challenge this responsibility. This is the case when individuals who have shared a common experience (i.e., dyads) are interviewed separately, but interview results are disseminated within the context of dyads. Based on our experience of conducting research with dyads and given how little literature is available to serve as guide, we set out to write this article to share the knowledge we acquired and the solutions we found. We will describe both the ethical challenges and the methodological decisions involved in conducting qualitative research with dyads. The article also describes different modalities of dyadic analysis, their benefits and drawbacks. This endeavor seems especially relevant as research with dyads is emerging in several domains involving couples, families, caregivers and health.

Transplant Trajectory and Relational Experience Within Living Kidney Dyads.

Living kidney donation is considered common practice across most Westernized countries. While extensive research has documented the experience of living donors, few studies have addressed the perspective of recipients, and even fewer have examined the experience of donor and recipient as an interactive dyad. In this study, our aim was to examine the reciprocal influence between donors and recipients across the transplantation process. We recruited a homogeneous sample of 10 donors and recipients, who were interviewed individually. Data were analyzed using interpretative phenomenological analysis. The presentation of results follows the stages of the transplantation process: the disease experience, the experience of offering and accepting a kidney, the screening period, the surgery, and the post-transplantation period. Results are discussed within the framework of Mauss's gift exchange theory, social roles, and altruism. This comprehensive description of the dyadic experience provides a way to frame and understand psychosocial aspects and relational implications of living renal transplantation.

Donors and recipients of living kidney donation: a qualitative metasummary of their experiences.

With the notable growth in the qualitative investigation of living kidney donation, there is value in aggregating results from this body of research to learn from accumulated experience. The present paper aims to draw a complete portrait of living donors' and recipients' experience of donation by metasummarizing published studies. We found that donors' experience, particularly the decision-making process, has been more extensively studied than the recipients' perspective. Donors differ in their initial level of motivation to donate but on the whole report positive experiences and personal benefits. They also identify difficult periods and the need for additional resources. Recipients report an often positive but more ambivalent reaction to donation. In terms of relational issues between dyads, while the topic remains understudied, the donor-recipient relationship and gift reciprocity have received the most attention. Results are discussed in terms of their implications for future practice and research.