Of the 750,000 mechanically ventilated (MV) patients in U.S. intensive care units (ICUs) every year, almost half are admitted with at least one major comorbid chronic condition. Two-thirds will survive ICU admission1 but many will experience significant persisting morbidity related to their chronic disease and the effects of their acute illness. To minimize morbidity, the Critical Care Societies are increasingly calling to engage ICU patients and their families in care by integrating them as members of the ICU team. Patient and family engagement (PFE) is defined as encouraging patients and families to acquire the skills, knowledge and means to be involved in managing their health, at the level they choose. In practice, this means encouraging patients and families to participate in direct care (such as early mobility and delirium management), to collaborate with clinicians and to partner in decision-making (by participating in interprofessional rounds). Engaging patients and families confirms for the patient and family that they play an important role in ICU care delivery which is one key component of activated patients (patients who are ready to be an agent in their own care management). In this way, patient and family engagement is a necessary precursor to self-management in the ICU setting. Yet, we know little about patient and family engagement, patient activation and self-management in the ICU.

Self-management and patient engagement are well documented predictors of better outcomes in the outpatient setting. Greater self-management behaviors are strongly associated with higher patient activation, and self-management and engagement are predictors of better outcomes and lower cost. Partnering with healthcare providers in the outpatient setting is also associated with improved outcomes, as an engaged team approach theoretically capitalizes on the knowledge of the patient’s family/surrogates, leading to more activated patients.

But by failing to understand PFE in the ICU and its potential to improve self-management for critically ill adults, we fail to provide complex critically ill patients and their families with tools to empower them during their acute illness. That failure may well cascade, limiting their ability to self-manage their acute and chronic conditions during and after ICU discharge. Given the growing number of ICU survivors with comorbid chronic illnesses, understanding PFE and how it may be linked to patient activation is crucial for optimizing outcomes of this vulnerable population. Due to the paucity of research on these concepts, qualitative examination of PFE and feasibility of assessing patient activation in the ICU is imperative. The central hypothesis of this work is that patient and family engagement in ICU care facilitates increased patient activation, predisposing the patient for greater self-management and leading to improved outcomes for mechanically ventilated patients. As a test of concept and feasibility, we propose a mixed methods study in 2 ICUs with the following aims:

• Specific Aim #1. Describe patient & family engagement in the ICU to identify who, how, when and in what ways patients and families are engaged in care using a three-step qualitative approach of observation, shadowing and interviews, for mechanically ventilated patients.
• Specific Aim #2. Explore how variation of patient and family engagement in the ICU may be associated with differences in patients’ activation prior to ICU discharge. We hypothesize that engaging patients and families empowers patients and families to have an important role in care and subsequently leads to higher patient activation.