Abstract
Background: How can healthcare organizations create the conditions for patients and care partners (family and friends who provide support to patients) to feel safe voicing or speaking up about their care preferences and concerns while receiving care? While health systems globally increasingly recognize the critical value of feedback and information shared by patients and care partners during care episodes; patients and care partners often hesitate to speak up or voice their suggestions and concerns – for fear of being labelled “difficult” or creating negative outcomes. When patients and care partners do not feel safe voicing, how can patients, care partners, and healthcare professionals work collaboratively to ensure patients receive care that aligns with their personal values, needs, and preferences?
In this presentation, we draw from the management literature on voicing in organizational settings to unpack reasons why patients and care partners are often reluctant to voice their feedback and concerns.
Methods: A systematic narrative synthesis was conducted of the health sciences literature in the form of a conceptual framework for how patient/care partner voicing in support of person-centered care can be supported in hospital settings through organizational behaviours and contextual factors (e.g., culture, climate, and tacit rules). We systematically searched three bibliographic databases for studies with qualitative data collection that sufficiently describe supportive organizational behaviours and contextual factors. Our study team includes two patient and caregiver advisors (Isra Amsdr and John Easton) – individuals with lived experience of the healthcare system who engaged in data sessions to validate preliminary findings from the narrative synthesis and collaborated to refine the components of the voicing framework.
Results: This framework delineates the individual, interpersonal, functional roles, and contextual factors that support voicing – and the interactions between each of these components. Emerging insights include the need for an organizational climate that is supportive of patient and care partner voicing (e.g., creates psychological safety, where voicing feels welcomed); the creation of deliberate spaces where patient/care partner voicing is invited (e.g., family conferences, feedback box); and professionals tasked with eliciting patient/care partner voicing and translating between patient/care partner values, needs, and preferences and the healthcare system.
Lessons learned: Meaningful collaboration between patients, care partners, and healthcare professionals is an important enabler of person-centered integrated care. However, person-centered care is difficult to implement across teams and organizations when patients and care partners do not openly communicate critical information. We discuss this framework’s broad applicability and relevance to various health and social care settings. In turn, we call for a turn to foundational behaviours and practices that build trust and shared understanding in therapeutic relationships. This presentation is intended to support health and social care practitioners engaged in collaborative care with patients and care partners, health services researchers, and importantly, the direct voicing activities of patients and care partners.
Next steps: We will share how our team is further validating this framework through an empirical study and future dissemination plans for healthcare professional and patient/care partner audiences.