OBJECTIVES: Patient participation is an established concept in public welfare. However, reports of the phenomenon 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 care unit from the patient's perspective.

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

METHOD: Data was collected through individual interviews and analysed using a phenomenological hermeneutical method.

FINDINGS: The results of our study show a variety of meanings and degrees of participation that continuously move on a sliding scale from acting as a captain to feelings of being on an isolated island. Patient participation varied due to individual cognitive abilities and individual preferences, and the caregiver's attention 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 processes or direct patient care decisions. An understanding of the concept participation from the individual patient is necessary to support person centred care and the patient's relatives play an important role in during the entire care process.