Struggling to return to everyday life—The experiences of quality of life 1 year after delirium in the intensive care unit

Abstract

Background: Many critically ill patients report a change in their health-related quality of life after intensive care unit (ICU) discharge. Patients who experience delirium during their ICU stay are perceived as a fragile group of ICU survivors, and the ‘quality of life’ phenomenon needs to be studied among these patients. Aim: To explore everyday life experiences of critically ill patients with delirium during the ICU stay, from ICU discharge until 1-year follow-up, focusing on their health-related quality of life and cognitive function. Study Design: We used a descriptive qualitative research design and interviewed patients 1 year after ICU admission. The participants were recruited from a pre-planned one-year follow-up study of ’Agents Intervening against Delirium for patients in the Intensive Care Unit trial’. Data were analysed using Framework Analysis Method and content analysis. Results: Nine women and eight men participated and reported a struggle when returning to everyday life or adapting to a new normality from hospital discharge to 1 year later. None of the participants had been aware of the challenges they would face after hospital discharge. They described a need for more information about these challenges to themselves and about primary care to better understand their situation and the struggles they experience during recovery. One overall theme emerged from the analysis ‘From enduring to adapting’ with three subthemes: ‘Struggling to regain a functional life’, ‘Struggling to regain normal cognition’ and ‘Distressing manifestations from the ICU’. Conclusions: To improve recovery and the quality of rehabilitation for critically ill patients suffering from delirium, it is essential to understand the phenomenon of ICU survivorship and what this fragile group of patients is going through. It is necessary to bridge the gap between secondary and primary care so patients can receive optimal training and support when needed. Relevance to Clinical Practice: Bridging the gap between primary and secondary healthcare services is urgently needed to improve rehabilitation for ICU survivors after critical illness.