Qualitative, grounded theory exploration of patients’ experience of early mobilisation, rehabilitation and recovery after critical illness

RATIONALE: Physical rehabilitation (encompassing early mobilisation) of the critically ill patient is recognised best practice; however, further work is needed to explore the patients’ experience of rehabilitation qualitatively; a better understanding may facilitate implementation of early rehabilitation and elucidate the journey of survivorship. OBJECTIVES: To explore patient experience of physical rehabilitation from critical illness during and after a stay on intensive care unit (ICU). DESIGN: Exploratory grounded theory study using semistructured interviews. SETTING: Adult medical/surgical ICU of a London teaching hospital. PARTICIPANTS: A purposive sample of ICU survivors with intensive care unit acquired weakness (ICUAW) and an ICU length of stay of >72 hours. ANALYSIS: Data analysis followed a four-stage constant comparison technique: open coding, axial coding, selective coding and model development, with the aim of reaching thematic saturation. Peer debriefing and triangulation through a patient support group were carried out to ensure credibility. MAIN RESULTS: Fifteen people were interviewed (with four relatives in attendance). The early rehabilitation period was characterised by episodic memory loss, hallucinations, weakness and fatigue, making early rehabilitation arduous and difficult to recall. Participants craved a paternalised approach to care in the early days of ICU. The central idea that emerged from this study was recalibration of the self. This is driven by a lost sense of self, with loss of autonomy and competence; dehumanised elements of care may contribute to this. Participants described a fractured life narrative due to episodic memory loss, meaning that patients were shocked on awakening from sedation by the discrepancy between their physical form and cognitive representation of themselves. CONCLUSIONS: Recovery from ICUAW is a complex process that often begins with survivors exploring and adapting to a new body, followed by a period of recovering autonomy. Rehabilitation plays a key role in this recalibration period, helping survivors to reconstruct a desirable future.