Introduction: Many critical illness survivors experience post-intensive care syndrome (PICS), but inadequate discharge education leaves patients and caregivers unprepared for the complexities of long-term recovery. This study explored what ICU survivors wish they had known before hospital discharge about recovery from critical illness. Methods: We conducted a thematic analysis of open-ended responses to the question “What specifically, if anything, do you wish you would have been told before leaving the hospital about the recovery from critical illness, the possible impairments, and challenges?” from a single-site online survey of ICU survivors (October 2024-March 2025). A multidisciplinary team inductively coded responses and refined themes through iterative consensus-building. Results: Of 146 survey respondents (9% response rate), 125 provided responses and were included in the qualitative analysis. ICU survivors were middle-aged (mean age = 53), White (93%), and 50% male. Three major themes emerged. (1) Patient wishes and recovery needs. Patients emphasized the need for timely, clear, and individualized information about expected physical, mental, and cognitive recovery challenges. Many highlighted gaps in education, unclear prognosis, and a desire to include caregivers in communication and care planning. (2) Recovery experiences and reflections. Patients shared a wide range of post-ICU challenges, including persistent PICS symptoms, fragmented care transitions, and reliance on informal caregivers. Despite these difficulties, some described motivation to set new life goals and appreciation for family support during recovery. (3) Feeling prepared and grateful. Survivors who reported receiving clear explanations and consistent support felt more confident in their recovery. These individuals expressed gratitude toward their healthcare teams and families, noting that encouragement and adequate information significantly eased their recovery after critical illness. Conclusions: Findings underscore the importance of providing timely, tailored information and setting realistic expectations to support ICU survivors during recovery. These insights can guide the development of structured, patient- and family-centered strategies in clinical practice and inform future research to optimize post-ICU care delivery.
You et al. (Sun,) studied this question.
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