Family Engagement in the ICU

Background: Patient and family engagement (PFE) in the ICU is proposed to encompass 5 domains: information sharing, respect and dignity, collaboration, activation and participation, and decision-making. However, less is known about how PFE in the ICU is achieved and experienced by clinicians and families. Research Question: How do clinicians and families experience PFE in the ICU? Study Design and Methods: We conducted a secondary analysis of a qualitative study (conducted 2016-2019) exploring PFE in the ICU that included 35 hours of observation, 15 shadowing experiences, and 22 interviews with ICU clinicians and family members at 2 medical ICUs. Using these data, we performed a framework analysis, a method for applying an existing analytical framework to the data. In this thematic analysis, subcodes were developed and categorized according to the 5 domains of PFE in the ICU. Data and subcodes that did not fit within the existing domains were flagged for further thematic analysis. The research team reviewed the data and subcodes that aligned with and diverged from the PFE in the ICU domains, generating additional themes about processes that enable family engagement. Results: Our data support the 5 domains of PFE in the ICU (information sharing, respect and dignity, collaboration, activation and participation, and decision-making). We found that PFE in the ICU is enabled through relationships between families and clinicians that (1) are built on trust, honesty, and rapport and (2) are dependent on effective communication and repair. Interpretation: Our results show that family and clinician experiences are consistent with the 5 previously conceptualized domains of PFE in the ICU. Family and clinicians in the ICU experience dynamic relationships built through ongoing interactions. PFE in the ICU is not a unidirectional product delivered to patients and families, but instead is a relational experience dependent on trust and effective communication between family members and ICU clinicians.