Perspectives and experiences of compassion in long-term care facilities within Canada: a qualitative study of patients, family members and health care providers

Abstract

Introduction This paper details a subset of the findings from a participatory action research project exploring a palliative intervention in long-term care sites across Canada. The findings presented in this paper relate to understanding compassion within the context of a palliative approach to long-term care. Methods Findings presented are drawn from qualitative interviews and focus groups with residents, family members, healthcare providers, and managers from 4 long-term care sites across 4 provinces in Canada. In total, there were 117 individuals (20 residents, 16 family members, 72 healthcare providers, and 9 managers) who participated in one of 19 focus groups. Data was analyzed by multiple members of the research team in accordance with thematic analysis. Individual concepts were organized into themes across the different focus groups and the results were used to build a conceptual understanding of compassion within Long Term Care . Findings Two themes, each comprised of 5 sub-themes, emerged from the data. The first theme 'Conceptualizing Compassion in Long-Term Care generated a multidimensional understanding of compassion that was congruent with previous theoretical models. 'Organizational Compassion: resources and staffing', the second major theme, focused on the operationalization of compassion within the practice setting and organizational culture. Organizational Compassion subthemes focused on how compassion could support staff to enact care for the residents, the families, one another, and at times, recognizing their pain and supporting it through grief and mourning. Conclusions Results suggest that compassion is an essential part of care and relationships within long-term care, though it is shaped by personal and professional relational aspects of care and bound by organizational and systemic issues. Findings suggest that compassion may be an under-recognised, but essential element in meeting the promise of person-centred care within long-term care environments. Electronic supplementary material The online version of this article (10.1186/s12877-019-1135-x) contains supplementary material, which is available to authorized users.

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“…The components of each intervention were mapped onto the multiple domains of compassion described in the Patient Compassion Model (see below), 32 an evidence-based, clinically relevant model of compassion that has been validated in various patient and health care provider populations. 1 , 33 , 40 …”

Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review

“…The involvement of PWA will also optimize the validity, design, and applicability of the research itself and the effectiveness of the resulting tools [ 11 ]. Co-production of evidence that is both scientifically robust and patient-specific oriented is important to appraising healthcare professionals’ and rehabilitation specialists’ practice [ 66 ]. Equalizing the power position-shift of power: The consistent involvement of PWA in research groups will promote a balance in power relations, between experts and PWA.…”

“…Involvement of PWA in qualitative participatory health research will promote a more moral/ethical way to empower PWA in an otherwise expert-dominated endeavor [ 11 ]. Endorse result presentations, promote dissemination, and ensure research impact: The consistent involvement of PWA promotes strategies for preventing and handling missing data [ 66 , 68 ]. PWA can contribute to creating reports, outcomes, and research results in a more comprehensible and aphasia-friendly format.…”

“…Endorse result presentations, promote dissemination, and ensure research impact: The consistent involvement of PWA promotes strategies for preventing and handling missing data [ 66 , 68 ]. PWA can contribute to creating reports, outcomes, and research results in a more comprehensible and aphasia-friendly format.…”

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