Patient and family partnership in critical care medicine research and clinical care is essential to achieve patient and family-centered care. Although there is an increasing interest in patient and family engagement, research is lacking to direct clinicians and researchers on how to provide opportunities for meaningful engagement. We review the recent literature and provide examples from our own experiences to guide all parties in this important and emerging area.
Though the literature is relatively nascent, studies suggest that there is a desire to engage patients and families in critical care medicine research and clinical care, however, uncertainty exists on how to achieve this goal. Engagement exists on a spectrum from presence to shared decision-making and direct contributions to care; most engagement in critical care medicine involves participation in research and presence at the bedside. Expectation management is essential for meaningful engagement and true partnership. Challenges to patient and family engagement exist, including determining appropriate compensation, aligning engagement with needs and skills, and recruitment, training and retention. These challenges can be mitigated with thoughtful planning and management.
Patient and family engagement in critical care medicine is an emerging field that requires further study to support definitive conclusions. Until then, it is important to match interested patients and family members with appropriate opportunities and provide training and support to ensure meaningful engagement.
aDepartment of Critical Care Medicine, Alberta Health Services and University of Calgary
bDepartment of Community Health Sciences and O’Brien Institute for Public Health, University of Calgary
cDepartment of Psychiatry and Hotchkiss Brain Institute, University of Calgary
Correspondence to Kirsten M. Fiest, Department of Critical Care Medicine, Alberta Health Services and University of Calgary, Ground Floor, McCaig Tower, 3134 Hospital Drive NW, Calgary, AB, Canada T2N 4Z6. Tel: +1 403 944 0732; e-mail: email@example.com