Everything everywhere all at once? Identifying exposures and outcomes that matter to families within and beyond the intensive care unit

As care for critically ill patients has advanced, so too has our recognition of the multidimensional and persistent morbidities that affect patients and their families following an intensive care unit (ICU) stay. Survivors of critical illness experience impairments across multiple domains of health—physical, cognitive, emotional, social, and financial—that can persist months to years after hospital discharge. Family members frequently serve as surrogate decision-makers for their loved ones in the ICU, and many become caregivers for their loved ones after hospital discharge. Increasingly, the critical care community has become aware of the impacts of these experiences on family members of ICU survivors and decedents, recognizing that ICU family members experience high rates of anxiety, depression, posttraumatic stress symptoms, and prolonged or complicated grief, outcomes that have been very difficult to mitigate in intervention studies to date.

In this issue of AnnalsATS, Wendlandt and colleagues challenge the assumption that measures of PTSS are the most important family-centered outcomes for ICU family caregivers. In their qualitative study of 21 family caregivers, they explored how participants defined experiences of wellness and distress 6 months after a loved one’s ICU admission using semistructured interviews. In so doing, they expand our understanding of how to describe post-ICU discharge outcomes for family members and identify opportunities for more complete measurement and eventual intervention development. They identified four main outcome themes: 1) positive versus negative physical and psychological outcomes (which overlap well with existing measures of PTSS), 2) high versus limited capacity for self-care, 3) comfort versus struggle in the caregiving role, and 4) regaining a sense of normalcy versus ongoing life disruption. Additionally, participants described the experiences that served as sources of distress as well as moderators that influenced family members’ resiliency and adaptation to stress events. Importantly, the key stress events as well as the identified moderators often involved events or circumstances that extended beyond the ICU admission.

Anne Song, Catherine L Auriemma