Struggling for independence: a grounded theory study on convalescence of ICU survivors 12 months post ICU discharge

Objectives: To explore and explain the challenges, concerns, and coping modalities in ICU-survivors living with a partner or spouse during the first 12 months post ICU discharge.

Design: Qualitative, longitudinal grounded theory study.

Settings: Five ICUs in Denmark, four general, one neurosurgical.

Methods: Thirty-five interviews with patients and their partners at three and 12 months post ICU discharge plus two group interviews with patients only and two with partners only.

Findings: The ICU survivors struggled for independence and focussed chiefly on 'recovering physical strength', 'regaining functional capacity', and 'resuming domestic roles'. The first year of recovery evolved in three phases characterised by training, perseverance and continued hope for recovery. The ICU survivors did not seem to worry about traumatic experiences. Rather, their focus was on a wide range of other aspects of getting well.

Conclusion: The study offers new insight into post-ICU convalescence emphasising patients' motivation for training to recover. The findings may contribute to defining the best supportive measures and timing of rehabilitation interventions in ICU and post ICU that may help ICU-survivors in their struggle for independence throughout recovery.