How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.

Background: Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities. Objectives: The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities. Research Approach and Design: We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts. Methods and Analysis: Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context. Ethic: This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). Discussion: Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.

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.

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.