To Örebro University

Objectives: Patient participation is an established concept in public welfare. However, reports of the phe-nomenon of patient participation during intensive care from the patient’s point of view are scarce.Therefore, the aim of this study was to explore the meaning of patient participation in the intensive careunit from the patient’s perspective.

Research design: A qualitative design was used for the purpose of the study with a purposive convenientsample of nine adult patients with memories from their intensive care stay.

Method: Data was collected through individual interviews and analysed using a phenomenologicalhermeneutical method.

Findings: The results of our study show a variety of meanings and degrees of participation that continu-ously move on a sliding scale from acting as a captain to feelings of being on an isolated island. Patientparticipation varied due to individual cognitive abilities and individual preferences, and the caregiver’sattention altered between the body and the person through the continuum of care.

Conclusion: Patient participation during ICU care is more than participation in decision-making processesor direct patient care decisions. An understanding of the concept participation from the individual patientis necessary to support person centred care and the patient’s relatives play an important role in duringthe entire care process.