Critical illness and recovery-learning from the shared experience of survivors and their families: A qualitative study.

Background: Improved survival from critical illness in recent years has led to an increase in patients with Post Intensive Care Syndrome (PICS). Routine, dedicated, specific and individualised assessment, rehabilitation and follow-up after critical care discharge is recommended but is currently inadequate in the UK. The aim of this study was to explore patients' and family members' experiences of a critical care admission, focussing on recovery and rehabilitation.

Methods: As part of an intervention development programme, a series of iterative focus groups with survivors of critical illness and their family members was held. Parallel groups with staff involved in the care and rehabilitation of critically ill patients were also conducted. Participants mapped out their recovery journey identifying key moments and challenges and shared their recommendations for recovery and rehabilitation. Brokered dialogue was used to enable patient and staff groups to ask and answer questions of each other. Data analysis was completed using reflexive thematic coding.

Results: Thirty-four participants attended the focus groups, with 28 attending the first two groups discussed in this paper. Using the experiences described by the participants, three overarching themes were identified; fear, helplessness and frustration. Participants also reported both short and longer-term consequences of ICU admission and shared their priorities and advice for recovery and rehabilitation.

Conclusion: Critical care admission is a traumatic experience for patients and family members. Our data highlights patients' needs for ongoing, holistic support during a stay in critical care and beyond.